Human Medicines (Amendment) Regulations

Lyn Brown Excerpts

Monday 18th March 2019 Commons Chamber

[Dr Whitford]

That is the key thing: they do not have the patient’s records and they do not know what problems a drug may have caused in the past.

This change could have a real impact on epileptics. It brings the danger of a fit, and the fit itself may be a threat to them. Obviously epileptics are exposed to sudden unexpected death in epilepsy and can suffer from trauma, depending on where they are when they take the fit. They can even lose their driving licence for a year because they have one fit. The social impact of that on epileptics is enormous.

It says in the explanatory notes that, because of that, epilepsy drugs and biological drugs would not be considered suitable for the protocol. However, it does not say that in the SI—they are not excluded. It is important that such people are protected.

[Lyn Brown (West Ham) (Lab)]

I have been listening closely to the hon. Lady. This is already happening. A friend of mine went to her chemist to pick up some drugs and the dosage was halved by the pharmacist, not by her doctor. She had enough drugs to keep her going until she went to the doctor again, who reinstated the original drug. I just think it is really scary at the moment; people do not understand why this is happening. It cannot be about Brexit, because it is happening now.

[Dr Whitford]

I am just coming on to that issue. I reiterate that it is the strength, rather than the dose, so I imagine the hon. Lady’s friend would be expected to take two smaller tablets, not to reduce her dose.

As I have said, the obvious thing would be to share the protocol with the prescribers, not to aim it at the pharmacists who are right at the end of the process.

Why is it that we are seeing the shortages now? Quite simply, there are two ways to stockpile: either by forcing increased production, which it is not necessarily within the gift of the Department or even the Secretary of State to do, or by setting aside some of the drugs within normal production. When I talk to my GP friends, they talk about a massive surge in shortages over the past nine months. That coincides almost exactly with the acceleration of stockpiling. My concern is that drugs are being set aside into the stockpile and that is causing shortages right now.

There should be publication of the list of drugs that are at risk of shortage, so that a GP can say, “For this lady or gentleman it is not that important, so if it is a shortage drug I won’t use it, but for this other patient I will have to use it.” Apparently, that is currently hidden behind commercial sensitivity.

It is important that a consultation and an impact assessment are carried out. I was shocked that the BMA was given a week to respond and the General Medical Council was not even consulted. This statutory instrument totally reverses medical and prescriber legal responsibility, so who is legally responsible? How do pharmacists feel about the fact that they might be held answerable for changing the drug, or will the Government underwrite that? I think that this has been appallingly handled and has been snuck in with no scrutiny and no debate.

The hon. Member for Leicester South (Jonathan Ashworth) talked about cost and time saving for GPs and, secondary to that, the impact on patient safety. If we look at the basis for the review in a year, it says that No. 1 will be the function of the market and that No. 2 will be the impact on patients, so again we see that patient safety is not being put at the heart of this. This proposal has not been properly thought through, particularly if it is envisaged as a long-term solution to drug shortages. No deal should now be off the table, as of last week. There should be time to look at this issue properly, consult properly and come up with something that will not endanger patients.

Integrated Care Regulations

Lyn Brown Excerpts

Monday 18th March 2019 Commons Chamber

[Stephen Hammond]

As the hon. Gentleman knows, the NHS has proposed in a recent legislative document that it looks at a number of issues. It is important that that round of engagements takes place, and the Government will consider what is said.

The majority of the amendments we propose simply ensure that the regulatory framework that applies to contractual arrangements for the provision of healthcare services continues to apply where services are provided under the new ICP contract and to those organisations that hold a contract. That is an important safeguard that, in simple terms, helps to ensure that care provided under an ICP contract is subject to all the same rules as care provided under existing and other NHS contracts, such as those governing the handling of complaints and the reimbursement of travel expenses.

The shadow Secretary of State has asked me to comment on the substantive change being proposed, underpinning the existing contractual arrangements for the provision of NHS GP services. The regulations will allow GPs who are currently providing services under existing contractual general medical services or personal medical services arrangements to suspend, rather than terminate, those arrangements in order to provide services under an ICP in what is known as a fully integrated arrangement. The British Medical Association has underlined that GPs should not be pressured into joining an ICP arrangement, and we want to make it clear to the House tonight that the participation of any individual GP practice is entirely voluntary. Any role in any ICP will be for them to decide. Allowing the suspension of GP contracts allows GPs to take part in an ICP arrangement but keeps the option available to them of returning to their previous contract.

The hon. Gentleman expressed a number of concerns about the ICPs. He implied that they had been brought in by stealth. In fact, the proposals have been subject to significant scrutiny by Parliament and the public, particularly in the past year. We have already discussed the examination of the evidence by the Health and Social Care Committee, which published a report last summer, which is, I believe, largely supportive of ICPs, recognises potential benefits and sets out helpful recommendations on introducing them in England. I have described the consultation processes previous iterations of the ICP contract and the regulations have gone through.

Moreover, as the Health and Social Care Committee was promised, NHS England has completed a full public consultation on the ICP contract and announced through the long-term plan that the ICP contract will be available for use. NHS England’s full response to the consultation was published on 15 March.

Various people have made points tonight about the privatisation of the NHS and said that ICPs are a route to privatising the NHS. They are clearly not.

[Lyn Brown (West Ham) (Lab)]

Yes they are!

[Stephen Hammond]

The NHS has stated clearly that NHS England’s expectation is that these contracts will be held by public statutory providers. The hon. Lady, who is making a number of points—[Interruption.] She says she is not making them, but shouting at me. Indeed, she is shouting at me.

[Lyn Brown]

Chuntering.

[Stephen Hammond]

Oh, she is chuntering at me. While she is chuntering at me, she might like to consider what the King’s Fund has said about the claims of mass privatisation, which is that they are “hugely overstated”. I have already quoted the Chair of the Select Committee, who said that the evidence to its inquiry was that ICPs and

“other efforts to integrate health systems and social care, will not extend the scope of NHS privatisation and may effectively do the opposite.”

It is important to recognise that NHS England has taken measures to build a clearer narrative around integrated care. The long-term plan, which will be backed by £20.5 billion extra by 2023-24, will introduce integrated care for patients in England over the next decade.[Official Report, 19 March 2019, Vol. 656, c. 6MC.] Where local commissioners propose to use ICP contracts, they will have to ensure that it is an effective and beneficial option for the local area. The regulations will ensure that the healthcare of this country is improved by integrated care providers. I commend them to the House.

--- Later in debate ---

[Lyn Brown (West Ham) (Lab)]

Should my Whip, who is not listening at the moment, wish me to sit down, he needs to indicate that to me and I will do exactly what I am told. The changes that we are discussing today are technical, but important. The creeping fragmentation and privatisation of our NHS, where more and more services are contracted out to unaccountable profit-making companies, has occurred precisely because of such obscure, technical changes.

My constituents need integrated care services across different organisations, as well as more preventive health and public health action. That is urgent, it should be a priority, and there should be legislation and full debate to make it happen. Currently, just 54% of my constituents—barely more than half—receive the breast cancer screenings they need. We have lower rates of physical activity than the national and London averages, as well as higher rates of smoking, and 44% of local children leave primary school obese. If the legislation we are talking about were just about joining up care for patients, creating genuine efficiency by avoiding duplication of services, or enabling patients to receive effective care closer to home in the community, rather than in hospital, I would absolutely welcome it.

[Jonathan Ashworth]

My hon. Friend is making an excellent speech, and I hope she continues to make an excellent speech. On the point about what is happening in east London, there is a very good integrated programme there for dealing with diabetes. The point is this: there are very good examples of integration taking place across the country without the need for this contract, which could usher in greater privatisation.

[Lyn Brown]

My hon. Friend is absolutely right. I believe, and I know he believes, that these changes are important and should not be done by statutory instrument. The goal of healthcare integration can and should be pursued with the full scrutiny provided by primary legislation.

Locally, these plans have raised huge concerns. Currently, Newham is in a sustainability and transformation partnership with seven other boroughs—Havering, Redbridge, Barking and Dagenham, Waltham Forest, Tower Hamlets, Hackney and the City of London. Those are really very different places, not only politically but in terms of age, ethnicity and levels of deprivation. Any integration plan that covers that wide an area will be incredibly difficult to get right.

I understand that the current thinking is more about dividing that eight-borough STP into three new integrated care systems, or ICSs. Newham will be lumped together with Waltham Forest and Tower Hamlets. I am very worried that pushing these areas together, with one extremely overstretched budget, will result in money being taken away from my constituents in Newham, whose needs are extremely high. If the Government were talking about enabling greater integration at local authority level, where democratically elected councillors could be properly involved, the issue would not be that much of a concern.

To be frank, I have absolutely no confidence that there would even be a proper consultation about integrating Newham into a three-borough ICS. I know that that is what local leaders expect only because I asked them about it before the debate. I am told that not one health body locally actually wanted to sign up to the STP—not one local body. But that did not matter to those who are really in control, so it was just put in place anyway as the East London Health & Care Partnership. This supposed partnership was given an incredibly complicated governance structure. Again, no one actually wanted it. That was not because health bodies do not want to collaborate; it was because this Government’s failed reforms do not have the confidence of clinicians.

There are many basic questions that need to be answered and that have not been. I have five for tonight. One, how do the Government plan to prevent fragmentation, given that there are so many different ways that these arrangements could be made? Two, how will existing borough-level partnerships slot into these new structures? Three, how are dedicated NHS staff, elected local representatives or even—horror!—patients themselves going to have control over how these structures are implemented, which areas are joined together and which services are included? Who will have that control?

Four, once one of these integrated bodies has been set up, what actual accountability will there be? As we know, public health and social care services are currently in the hands of councils. Even beyond that, many health and wellbeing objectives are the statutory responsibility of local councils too. Therein lies accountability to local people, but it is totally unclear to me how councillors will be able to hold the new ICPs to account in turn. If those new bodies are going to be responsible for making decisions, they should have to be transparent and accountable. I am not at all opposed to the integration of services, but we must create more accountability, and not risk losing the little that is currently there.

My fifth and final question is this. How will the Government guarantee to my constituents that this change will not become another back-door privatisation? How can they reassure me that the enormous, inefficient, profiteering “health maintenance organisation” monsters that exist in the United States will not be given a foothold here in exchange for, say, a trade deal post Brexit? This is what I find most offensive about the statutory instrument. Ministers have been offered the chance, time and again, to say that private companies will not be able to act as integrated care providers, and will not be able to bid for the huge contracts that will be created. But I have heard no good reason why the Government will not make those commitments.

[Rosie Cooper (West Lancashire) (Lab)]

The House of Commons Library recently confirmed that 26 health service contracts worth more than £128 million are currently out to tender, on the basis of legislation that NHS England recently urged the Government to repeal. Does my hon. Friend not think that private companies should be blocked from securing these contracts, and that the Government should deal with the counter- productive effect that these competition rules and powers have on the integrity of NHS care? There is a branch of Virgin Care in my local community. Someone who attends a podiatry appointment, for example, will be told that no qualified staff are on hand, but only people who can cut nails. It is outrageous that those people are being paid on the same basis as everyone else.

[Lyn Brown]

My hon. Friend is absolutely right. Private companies are able to work within the structure set out in primary legislation such as the 2012 Act. The Minister said in an interview that one of the reasons why we cannot have this in a Bill is that it would be too complicated to draft. As far as I can see, however, it is quite simple. The Government should bring forward new legislation to put these reforms on a proper transparent footing with full scrutiny, and should argue for the decisions that they want to make—including decisions about openness to private contractors, if that is something that, ideologically, they want to defend.

The Government should give the English electorate a plan that they can see and can judge for themselves. The Government should tell the electorate what they are doing with the NHS. My feeling is that their proposals are contained in an SI because they hoped that they would slip by, would not be seen and would not be judged, but I tell the Minister that he will be judged.

Question put.

The Deputy Speaker’s opinion as to the decision of the Question being challenged, the Division was deferred until Wednesday 20 March (Standing Order No. 41A).

Depersonalisation Disorder: NHS Treatment

Lyn Brown Excerpts

Tuesday 12th March 2019 Westminster Hall

[Lyn Brown (West Ham) (Lab)]

It is an absolute pleasure to serve under your chairmanship, Mr Gray.

In the 2017 Christmas Adjournment debate I spoke about depersonalisation disorder, or DPD. I told something of the story of my constituent Jane, and requested a meeting to discuss NHS treatment of DPD. Since then the Minister has kindly met with me, Jane and Dr Elaine Hunter, a leading DPD clinician. The meeting was very sympathetic and I thank the Minister for that. We agreed that we would follow it up with a short Westminster Hall debate, to speak publicly about why the issue is so important. I shall therefore take the opportunity to talk about depersonalisation and put a couple of what I hope are gentle asks on the table.

What is depersonalisation? DPD can be triggered by a traumatic experience, a panic attack, stress or, indeed, drug use. It is a fairly common psychological or mental process for dealing with trauma. It feels as if the mind is detaching from the body; those affected feel as if they are outside themselves. Everything feels rather unreal. I have certainly felt that way before, at a time of significant and severe stress. However, depersonalisation is an intensified version of the feeling, and it is not temporary. It sets in indefinitely. When people have DPD it will often be accompanied by the sensation of noticing themselves as if from the outside, as if they are a character on a screen—almost as a character in the play of their life. The feeling can be so strong that those who have DPD are less aware of their bodily sensations, such as their heartbeat.

DPD is different from a psychosis such as schizophrenia because people who have it are aware that the experience is subjective, and not something changing in the world around them. A common difficulty for those with DPD is putting the experience into words. Many use metaphors or similes, comparing their experience to watching a TV screen. They may use adjectives such as “fuzzy” or “blurry” to describe how they feel. The lack of awareness of the condition, combined with the difficulty in communicating the precise symptoms, is the reason why many are repeatedly misdiagnosed.

[Jim Shannon (Strangford) (DUP)]

I was present on the previous occasion when the hon. Lady raised this subject. I was quite alarmed when I did some research on the disorder that she has described. I am sure that she knows the figures. According to studies in the United Kingdom and the United States, DPD affects some 2% of the population—1.3 million people in the United Kingdom and 6.4 million in the US. The hon. Lady is clearly raising awareness today, but is there a greater need to raise awareness among GPs, to make sure that they can make early diagnoses, and understand and respond to the condition?

[Lyn Brown]

I absolutely agree with the hon. Gentleman. I want to talk later in my speech about how many people experience the condition, and about other conditions that similar numbers of people are diagnosed with but that are far more common and have more resources from the NHS. I will go on to argue that DPD is fairly significant, given the number of people affected, and that more resources and effort are needed to assist them.

Many sufferers, as I mentioned, are misdiagnosed— often for years on end. Often when someone with depersonalisation disorder is misdiagnosed they are given medication, which can either have little effect or be quite harmful. Naming the symptoms and people understanding what has happened to them can be an important experience. Understanding the condition and putting a name to what they have can make someone feel an awful lot better. My constituent Jane Charlton struggled terribly before she was diagnosed. She imagined that she might have a degenerative disease, or that she might be dying. Learning the name of the condition was a crucial step in understanding it, living with it and eventually learning ways of dealing with it.

The onset of DPD was triggered for Jane by cannabis use. She was just 18, on holiday with a boyfriend, and had smoked cannabis only once before. Her boyfriend prepared her some cannabis resin and mixed it into a yoghurt. Jane tried a little—no impact; so she tried a bit more. She describes what happened next:

“My perception drew back into my head, almost as though I was now looking at the world from the back of my own eye sockets. I perceived a delay between an external event, and my brain understanding or processing it. Suddenly there was a fracture between the world and me. While my body was still in the world, my mind had become a disengaged observer.”

As I said, in DPD the individual is aware that their perception has changed, so although the experience feels like a blurring or a distancing, for Jane it was terrifying:

“During that first episode…hours followed where I sought reassurance from those around me, wanting to touch and talk to them constantly. I wanted to check that I still existed. Eventually, exhausted, I slept, in the hope that it would pass overnight. It didn’t. The next morning, the shift in perception remained, and would in fact remain for every second of every day for the next three years.”

A temporary experience of depersonalisation can serve as a defence mechanism if there is a traumatic event. It allows separation from immediate reality, but if it spreads beyond that and becomes depersonalisation disorder, people such as Jane can become separated from other emotions as well:

“If I quieten my mind, I can almost taste the colour and richness of life as I knew it before...but I can barely remember what it feels like. These days I’m in a constant state of grief; I feel as if I’m grieving for my own death, even if I seem to be around to witness it.”

It is hard to imagine the impact that that would have on a young person’s life, for those of us who have not felt it. For three years, in Jane’s case, there was no diagnosis and no remedy. Even with the right diagnosis DPD is hard to treat. Jane has had four major episodes of depersonalisation disorder, despite all her hard work, often with experts in the field. Her current episode is ongoing, and entering its fifth year.

Another person who has depersonalisation is Joe Perkins. He runs a YouTube channel called the “DPD Diaries”, which is a wonderful accessible resource for learning about the condition. Joe told me he has had about 100 medical appointments over the past 10 years, but he can count on one hand the number of professionals who had actually heard of the condition. His diagnosis took 10 years. Sadly, that is a normal length of time in the NHS at the moment. He had 10 years living with DPD and not understanding that it was a recognised medical condition and he was not on his own. He explained his experience of the condition:

“The most difficult thing for me to deal with day to day is a complete lack of emotions. I experience neither happiness or sadness; life seems completely flat; and it’s very difficult to feel motivated for anything when everything feels meaningless. Having to explain to your partner that you’re unable to feel love for them is an incredibly difficult conversation to have—and one that naturally puts a huge strain on any relationship.”

I am sure we can all understand that.

Joe first started experiencing symptoms while he was studying for A-levels, when he was too young to be eligible for treatment at the Maudsley clinic, the only facility available in the UK. Fortunately, he has since started to receive treatment. The referral took a full year, and the waiting list is long, with numbers spiralling as awareness rightly grows.

The invisibility of DPD makes it all the more important that we speak about it in this place, and I am grateful to have had the opportunity today to do just that. Just a few facts will show that depersonalisation and derealisation—a closely related condition—are an urgent concern and need far better treatment under the NHS.

First, depersonalisation and derealisation have symptoms that many of us will find familiar; 75% of us will have experiences similar to depersonalisation at some point in our lives. Secondly, as the hon. Member for Strangford (Jim Shannon) said, between 1% and 2.4% of people are likely to have these conditions—a similar level to bipolar disorder, which is far better understood and resourced, and which our GPs and experts are able to spot.

Thirdly, it is important to know that there is only one small clinic in the UK that specialises in treating the condition and, as I have said, it does not treat people under the age of 18, despite the fact that sufferers from depersonalisation disorder typically have their first experience of it in their adolescence. Finally, and rather damningly, the average diagnosis takes between eight and 12 years from the point of symptoms appearing. Those are the facts I have received.

I have talked about what DPD is, what it feels like, and the fact that it is very poorly known, which helps to explain the almost unbelievable figure of eight to 12 years to diagnosis. How debilitating DPD can be is the most important thing to understand, but the lack of provision is extremely important, too. We have a lot of work to do if we are to build the same scale and quality of NHS support for those with DPD as for those with depression or bipolar disorder.

I pay tribute to Jane for all the work she has done on this issue. She is a brave woman. She featured in an article in The Guardian in 2015, which reached a huge number of people. In 2017, she followed that up with an appearance on the Victoria Derbyshire programme. During the programme, several people called the show to say that Jane had helped them to recognise their own condition.

Jane continues to raise awareness through lobbying—she lobbied me—and runs a peer support group for people suffering from DPD, so they can experience solidarity and share experiences. She has also founded a charity called Unreal, to unify all the different bits of work being done. Jane has done all of that while holding down a full-time job and dealing with her own DPD. She has my absolute respect and gratitude for that. Jane’s work is really helping, but we need to go so much further to spread awareness not only among members of the public, but among NHS professionals.

As I said at the start, Jane, Dr Hunter and I have already met the Minister, and I am hopeful that she will be able to tell us more about what action is already being taken, but I would like to use this opportunity to put on record our four asks. All of them can be accomplished within the next few years, and none, we think, would require huge investment of resources.

First, on training, a 2017 edition of The BMJ published new guidance on the assessment and management of DPD. That was very welcome, but it has not led, and will not lead, to better and faster diagnosis and treatment in and of itself. My first ask is that the Minister write to the presidents of the Royal College of General Practitioners and the Royal College of Psychiatrists, to request that they bring this information to the attention of their members and ensure that training on DPD is made part of the core training for GPs and psychiatrists.

Secondly, I ask the Minister to push for the design and delivery of a programme of training in NHS mental health trusts around the country, not only to raise awareness, but to improve assessment and management of the disorder locally. That could include the appointment of a local depersonalisation disorder lead, who can thereafter provide guidance to local clinicians.

My third request is that those leads link together to improve access to treatment for those with the condition. I think the Minister would agree that it is not good enough to have just one small clinic at the Maudsley treating all those people across the country who have depersonalisation; we need better and more. Finally, given that expert support for young people experiencing DPD simply does not exist in the NHS, I ask her to ensure that there is specialist provision in child and adolescent mental health services, so that those under 18 can receive treatment when they need it.

Those simple steps could make a difference and bring down the average diagnosis time from an absurd and unacceptable eight to 12 years. They will help to ensure that no matter where someone lives, if they go to their GP, help will be available. So many people live in silence with this largely invisible condition. We have a long way to go to guarantee effective diagnosis and treatment for them on the NHS, but these four asks, if realised, would, I hope, start us down a good path.

[The Parliamentary Under-Secretary of State for Health and Social Care (Jackie Doyle-Price)]

It is a pleasure to serve under your chairmanship, Mr Gray. It is also a great pleasure to respond to the debate brought by the hon. Member for West Ham (Lyn Brown).

As the hon. Lady says, we have met to discuss this before, and I too extend my thanks to her constituent Jane, who has been incredibly courageous, despite living with a condition that is profoundly distressing for her to manage, in none the less using that in such a positive way. Frankly, the most important thing we can all do is to raise awareness of this disorder, and she is doing that beautifully and is incredibly articulate in how she does it. I pay absolute tribute to her; she has certainly put the disorder on my radar, so I am delighted to have the opportunity to discuss it in the House and do our bit to raise awareness, because, as the hon. Lady has mentioned, eight to 12 years before getting a diagnosis is not good enough.

The reason people wait so long is that this is a disorder that is not understood, but it is also fair to say that many personality disorders are misunderstood. We tend to lump mental ill health and disorders together, but they require to be treated in very different ways. Often, when it comes to disorders, medication is not the best solution, so it is important that we get diagnosis right and the way we will do that is by raising awareness of what is, as the hon. Member for Strangford (Jim Shannon) said, a very common condition. Many of us may have had out-of-body experiences when we are going through something unpleasant, because that is how the body naturally copes with trauma, but when people are going through sustained trauma, as many sufferers of DPD have, it becomes a way of dealing with life.

The worst thing, as the hon. Member for West Ham highlighted, is that that can often be brought on by drug use. I do not think we should be squeamish about mentioning that. We have a debate going on about drugs at the moment that is all about, “We have lost the war against drugs; it is all done through the lens of crime and disorder.” The reality is that the extent of cannabis use in this country is contributing to our mental health crisis—of that I have no doubt—and I do not think we should be squeamish about saying it, so I am grateful to the hon. Lady for giving me the opportunity to do exactly that.

We must ensure we do better. Last year, I had the great privilege of chairing the women’s mental health taskforce, and I saw that we are seeing a greater scale of mental ill health being experienced by women between the ages of 16 and 24. We put trauma at the root of much of that, and we have a strategy to roll out much more trauma-informed care across the NHS, which I hope will also extend to raising greater awareness of this disorder.

The hon. Lady’s point about making GPs and practitioners more aware of this disorder during their training is very good. We—collectively, as a system—need to think what more we can do to educate the whole NHS about the difference between severe mental ill health brought on by other conditions, things that are brought on by, for example, trauma, and the whole issue of disorders. We should not just medicalise treatment through prescribing drugs but should put together wraparound support and care, giving people the tools to manage what are often debilitating conditions.

As I said, I greatly enjoyed meeting Jane and the clinicians from the South London and Maudsley NHS Foundation Trust last year, where I was given a compelling presentation. We need to explore this condition more, so that we get this right. Its triggers are poorly understood but may be related to previous trauma, as we have heard.

The hon. Lady asked for more support through CAMHS. A lot of this trauma starts and is sustained in childhood. An important tool in spreading awareness of this disorder will be the new children’s mental health teams that will go out into schools. We are looking for mental health leads within schools to refer children that they sense are having difficulties, so that we can intervene early to support them. We know that the longer people live with this ongoing trauma, the harder it is for them to manage. Without going into individual cases, because it is very distressing for the people involved, I am certainly aware of cases of adults now living with this disorder having gone through sustained trauma in childhood. We clearly need to find a way of dealing with that.

We have come a long way in breaking down mental health stigma and raising awareness of different conditions, but I repeat that there is a real lack of awareness about disorders. We now talk broadly about bipolar disorder or borderline personality disorder, but do people really know what they mean? I do not think so. We need to spin our education around that. As the hon. Lady mentioned, at the moment only one clinic specialises in this disorder. Partly because of the lack of awareness, it is fair to say that the research evidence on what works to treat this disorder is still at a very early stage. Obviously, the NHS will support further investment in those treatments based on evidence. We lack National Institute for Health and Care Excellence guidelines for the treatment of DPD. That must be on the do-to list.

Essential to that support will be finding out more about this disorder. This is a learning process for everyone, and people like Jane obviously contribute massively, but it is for clinicians and researchers to do their best and really get to grips with what will be required. I acknowledge the world-class work being undertaken at the Maudsley clinic, which is one of the leading research and clinical treatment units in the world for this condition. It has pioneered an incredible service, which Jane praised to the hilt for what it has done for her health. It really works to improve health outcomes for patients and is dedicated to expanding the understanding and treatment of depersonalisation through its research, which I encourage, because further research is vital to improving our understanding of the prevalence of this condition and its treatment.

The Maudsley clinic has successfully assessed more than 500 people since the inception of its service, which is amazing, but as 2% of people suffer from it, there is more to do. It also works closely with the research unit at King’s College London, which adds to that understanding. Clearly, waiting nine to 12 months for therapy after diagnosis is not good enough, so I am pleased to say that the Department held an initial roundtable meeting at the end of last year to hear about the work of the service provided by the trust and to discuss current research into those treatments and suggestions on NHS management of the condition. We look forward to taking that work forward. We also discussed options for next steps with the Maudsley clinic, including its applying for a development grant from the mental health policy research unit of the National Institute for Health Research.

I understand that the team at the specialised unit at the Maudsley clinic has faced challenges in acquiring such funding in the past. It is tricky: we need evidence to get the money for research, but money for research is needed to feed the evidence. I completely understand that. However, I say to the hon. Lady that the Department’s research team will discuss with the unit the most appropriate type of research funding for it to bid for. Clearly, we want to make sure that we make the most of its expertise and expand our understanding of this condition. I hope that that brings some reassurance. I look forward to seeing further developments in this space.

[Lyn Brown]

As always, I am delighted by what the Minister has offered us, especially on research, which is fantastic. I thank her for that. However, I would not be me if I did not press her on the three things on my list that she has not mentioned—writing to the presidents of the Royal College of General Practitioners and the Royal College of Psychiatrists, introducing a programme of training for mental health trusts and improving access to treatment for under-18s. I am happy for the Minister to write to me on those.

[Jackie Doyle-Price]

I would like to take that away and discuss with the NHS clinical lead how best to do those. I agree with the hon. Lady, but I will look at this in the broader context of disorders and really getting that understanding of severe mental health conditions and ongoing disorders, which need different tools. However, I will write to the hon. Lady, and I know that we will continue to have dialogue on this issue.

In conclusion, I readily acknowledge that there is still a lot of work to be done to support people with this disorder and to help them to make a full recovery with treatment and support. I assure the House that that is very much on my to-do list. I look forward to having further dialogue with the hon. Lady and Jane, who I wish every success in managing her condition. I hope I have provided sufficient reassurance that we are committed to doing what we can for these people.

Question put and agreed to.

Children with Life-limiting Conditions

Lyn Brown Excerpts

Tuesday 29th January 2019 Westminster Hall

[Lyn Brown (West Ham) (Lab)]

I am grateful to you, Ms Dorries, for calling me to speak, and to the hon. Member for Strangford (Jim Shannon) for giving me the opportunity to raise an urgent case.

My constituent, Shakil Malji, has a daughter, Maryam, who is five months old and a beautiful, engaging child. Recently, Maryam was diagnosed with a terrible condition called spinal muscular atrophy, type 1. The effects of SMA1 if left untreated are horrific. The disease causes muscles to waste away even before they can properly develop. It reduces and then takes away the ability to do basic things unassisted, including walking, crawling, sitting, eating, drinking and breathing.

Maryam’s family are devastated—of course they are. However, an effective treatment developed by international drug company Biogen—remember that name—does exist: a new drug called Spinraza. Clinical trials, which ended more than two years ago in 2016, showed that Spinraza is effective and can provide a lifeline—a longer life and less suffering; what else is medicine about? Spinraza is available on the NHS in Scotland and in 23 other European countries. It is licensed for use in the UK, but it is not available to Maryam because Biogen and NICE have not yet reached an agreement, and because last November Biogen’s extended access programme was closed; I have been told repeatedly that it will not reopen. To date, 220,000 people have signed a petition about ensuring that all children with SMA get access to Spinraza through the NHS. I have written to the Secretary of State to encourage him to intervene. The NICE approval process is taking far too long.

I am here to talk about Maryam, however, and to argue that Biogen has a special and moral responsibility to ensure that she receives the care she needs. SMA is genetic and Abdullah, Shakil’s son, was also diagnosed when he was very young. Shakil was offered access to Spinraza for Abdullah as part of the clinical trial. That trial was successful and led to Biogen being able to sell the drug. Abdullah, unfortunately, was still very weak from his condition, and he died in 2015. But Maryam could have that drug now, soon after diagnosis, which would bring the family hope again.

Shakil feels that his family have been used. His son helped to test the drug but it is now being denied to Abdullah’s sister. Biogen offers to work with NICE towards what it calls a “bridging solution”, if and when NICE commits to a permanent agreement to pay for SMA patients to access Spinraza. Shakil and I have been encouraged by Biogen to campaign for that, even as the weeks pass and as Maryam inevitably gets weaker.

I call those tactics heartless. In effect, Biogen’s approach is to hold a baby’s life in its hands and to ask a still grieving family to use their child to get the deal that the company wants with NICE. Shakil and his family have suffered so much, and Maryam needs Spinraza as soon as possible. I will not let the Government or NICE off the hook on this one, and I would like to meet the Department. Biogen, however, needs to step up now to offer a way forward for Maryam—she cannot wait. Biogen, do the decent thing!

--- Later in debate ---

[The Minister for Care (Caroline Dinenage)]

Of course, Ms Dorries. It is a great pleasure to serve under your chairmanship. I congratulate the hon. Member for Strangford (Jim Shannon) on securing the debate and on his enduring and passionate commitment to this incredibly important cause.

We heard incredibly powerful speeches from both sides of the Chamber, with lots of great examples of amazing practice in different regions. Some worrying issues were mentioned; I thank the hon. Members for West Ham (Lyn Brown) and for North Tyneside (Mary Glindon) for raising the issue of the life-saving drug that they are keen to get hold of for their constituents. I will of course commit to looking at that with the Secretary of State, but I share the concern of the hon. Member for West Ham that children should never be used as pawns in communications between drug companies and Government organisations.

[Lyn Brown]

May I just press the Minister to agree to the urgent meeting I requested?

[Caroline Dinenage]

Absolutely. The meeting probably would not be with me, because the issue does not fall under my portfolio, but it is really important that the hon. Lady meets the relevant Minister.

The debate has been very broad, and a lot of questions were asked. I will attempt to answer as many as I can, but I commit to writing to hon. Members with all the answers they asked for if I miss any out. Whenever we discuss this issue, we must keep at the back of our minds the powerful point made by the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron), despite her throat issues, that at a time of their lives when they are dealing with unimaginable stress and grief, parents should not have to fight for what they need to best care for their children.

The hon. Member for Swansea East (Carolyn Harris) painted a picture of how the world ends when you lose a child. I cannot even begin to imagine that, but it must feel the same to be told that your child may die at a young age. That must, quite simply, be devastating. As the hon. Member for Strangford said, almost 40,000 children and young people aged 19 or under in England live with a life-limiting condition and may need palliative care. Of those, around 1,000 die every year.

As outlined in the NHS long-term plan, we know that children’s palliative and end of life care have not kept pace with the growth in clinical care costs or with inflation. NHS England’s hospice grant programme provides £11 million a year for children’s hospices, which are incredibly valuable. I have spoken before—probably in this room—about my great passion for children’s hospices. That comes from my mum who helped raise money to build Naomi House children’s hospice just outside Winchester, and throughout my twenties she made the whole family partake in a range of humiliating fundraising exercises to raise money for that. I went to visit Naomi House again last year, many years later, and I saw at first hand the incredible, valuable services that it offers, not just for end of life care, but because of its respite and outreach work, which is a lifeline for so many families.

Hon. Members will know the invaluable services offered by children’s hospices, and I was pleased that in the long-term plan additional funding has been made available each year for children’s palliative and end of life care services. I understand the confusion about the different amounts that have been mentioned and issues around that, and Department officials are currently working with NHS England to clarify those numbers and what they mean. I am clear that funding for children’s hospices is vital. We must ensure they get the money they need, and that money must increase from its current levels.

As the hon. Member for Strangford pointed out, there is regional variation in how palliative care is delivered. I know that such care is exceptional in some parts of the country, and many staff up and down the country go above and beyond to ensure that experiences for children with life-limiting conditions, and those at the end of their life, are as good as they can be. We know, however, that there are areas where we need to do considerably more, and NHS England is firmly focused on providing support and challenge to achieve that. Choice at the end of life is a centrepiece of the Government’s drive to improve end of life care, and for choice to be meaningful it needs to be personalised and matched by healthcare services that respond in an effective way that places patients, families and carers at the heart of decision making. We know when we achieve that that we have got it right, but also that we have a long way to go. I pay tribute to the all-party group for children who need palliative care, and charities such as Together for Short Lives, and the work they are doing to take that crusade forward.

Foetal Alcohol Spectrum Disorder

Lyn Brown Excerpts

Thursday 17th January 2019 Commons Chamber

[Bill Esterson (Sefton Central) (Lab)]

It is a shame that the Children’s Minister, the hon. Member for Stratford-on-Avon (Nadhim Zahawi), could not stay for the debate, because I think that it follows on very naturally from the last one.

“Babies being born brain-damaged by alcohol is a national emergency”. So ran the title of a piece in today’s edition of The Times about this debate. It is justified by a recent study conducted by Bristol University, which suggests that some 79% of women say that they drank alcohol while pregnant, and that between 6% and 17% of the 14,000 or so children covered by the study have foetal alcohol spectrum disorders. Scaled up—and this is why the term “national emergency” is not misplaced—that gives a figure of between 42,000 and 120,000 children a year.

So what is foetal alcohol spectrum disorder? It is an umbrella term for a range of effects that prenatal alcohol exposure can have on an individual. FASD is the commonest non-genetic cause of learning disability in the United Kingdom, yet it is entirely preventable. It lasts a lifetime: this is not just about babies. What does it look like? People often think that they understand the syndrome. They say to me, “Yeah, we know about that. It is a really bad problem when women have drunk heavily during pregnancy.” It is true that there are often facial and physical features characteristic of children with FASD, but, relatively speaking, that applies to a very small proportion of the wider spectrum.

The impact on the brain, although usually not immediately obvious from the outside, affects language, memory, attention, processing and understanding, and creates emotional, behavioural and learning difficulties. Children often struggle with complex concepts such as time, metaphor or consequences. Rewards and sanctions mean very little to children with this kind of brain damage, and consequences do not mean very much either.

A constituent of mine adopted two children. One of them, who is 16, had no idea of the consequences of his actions, and got into trouble. He has no idea that he has done anything wrong—the idea is meaningless to him—but because of a wider lack of understanding, including a lack of understanding in our criminal justice system, he very nearly went to prison. He was spared that, more by luck than by judgment. His victims did not understand—for good reason: why would they—and I think that there was very little understanding in the system.

A 17-year-old who gave evidence to the all-party parliamentary group on foetal alcohol spectrum disorders, which I chair, described the effect on her emotions. When she gets angry, she has no control whatsoever. I know that is true of many people, but controlling anger can be harder for those with this kind of brain damage. She described to our all-party group how she sees herself from the outside, as somebody else almost; it is a sort of out-of-body experience, and she has no control over it. I have heard that repeated by a number of children and young people affected by FASD, including my own adopted daughter; I have two adopted children, both of whom are affected by this, which is why I have become aware of it and taken so much interest in it.

There are implications for society as well as individuals, because this disorder does not go away when children become adults. In Canada, they have estimated that half of their prison population has FASD; I wonder whether the situation is very different here. FASD affects people’s ability to get qualifications, and I wonder how many of those who are sleeping rough or are otherwise homeless have FASD. Returning to the point I made about not understanding time or consequences, I wonder how many people who are sanctioned for not attending appointments with the Department for Work and Pensions have FASD. There is likely also to be a strong link between FASD and having difficulties with holding down a job or maintaining a stable relationship.

In the United States, a study last year estimated an annual personal cost of $24,000, before considering the cost to the criminal justice system. That is a relatively small element of the cost for some of the people with FASD in the United States. For years in the United States they have described people with FASD as million-dollar babies, often multi-million dollar babies, because of the long-term societal costs as well as that to the individual.

We have just had a very good debate on children’s social care, and I wish I had been able to take part instead of just listening to it. Population evidence to the all-party group suggested—this is a relatively low estimate —that at least a quarter of the children in the care system are affected by FASD. I have heard other adopters and people who run adoption agencies describing adoption as a family-finding service for children with FASD, because it is so common among the adopted children population. May I add to the tribute paid in the last debate to adopters, foster carers and all professionals who do what they can to support the children, young people and, indeed, adults who continue to face the challenges of FASD?

What am I asking for? I am asking for action on prevention and diagnosis, and action to cut the numbers, and for a sea change in our approach and our building of awareness among the population, including and especially among health professionals.

[Lyn Brown (West Ham) (Lab)]

My hon. Friend and I have talked about this issue a number of times, and I commend him for taking it forward. I was interested to read that twins who are exposed to exactly the same amount of alcohol in the womb can have very different outcomes. It is a very complicated situation. Genetic factors are involved and we have no way of predicting in advance what the risks are. Does my hon. Friend agree that we need to understand this better, we are learning all the time, and we cannot identify anything that would make drinking safe during pregnancy?

[Bill Esterson]

I thank my hon. Friend for her intervention which prompts me to cite a recent study from the Washington State University. Its foetal alcohol syndrome diagnostic and prevention network has identified that foetuses can experience vastly different FASD outcomes despite being exposed to identical amounts of alcohol—which is what happens with twins. There is no way of predicting what will happen, and its conclusion, which I am glad to see the chief medical officer now accepts, is that the only safe amount to drink is “none at all”.

I am asking that the chief medical officer’s advice and guidance, which has now been accepted by the National Institute for Health and Care Excellence as well, be given much greater prominence and that we build awareness so that everyone understands it, especially, but not exclusively, health professionals. I am asking that we have a proper study of incidence so that we need not rely on the limited evidence of the Bristol University study. It was only able to make rough estimates, given the nature of its research, but if it is between 6% and 17%, it really does need that intervention and prevalence study.

We have to build greater understanding among health professionals and professionals right across the public sector. I have mentioned support as well. There needs to be greater support for those living with FASD—both those suffering from it and those caring for them— and those in education and elsewhere who are looking after them.

[Bill Esterson]

The hon. Gentleman is absolutely right to draw the comparison with smoking. There is no way anybody does not understand that you do not smoke when you are pregnant. We need the same cultural understanding of the effect of alcohol.

I am very pleased that the chief medical officer listened to the all-party group’s advice in the inquiry that we held when we published our report at the end of 2015 and that the guidance is now right and advises women not to drink at all if they are pregnant or planning to conceive. NICE caught up last year, but many people, including some health professionals, still regard the previous guidance as relevant. There is a question mark for many. They think, “If the advice previously was one or two drinks, maybe it’s still okay”. It is not, and we need to make that clear.

The country has a history in this respect going back many years. A glass of Guinness used to be thought a good idea for pregnant women because of the iron.

[Lyn Brown]

And red wine.

[Bill Esterson]

My hon. Friend says red wine too.

I described some of the symptoms to a constituent of mine in his 60s, and he said, “That’s me”. That will have been a result of the culture and the advice about it being okay to drink. We need a sea change in that culture, which is so deep seated, in order to end the misapprehension. A baby’s liver matures later in pregnancy than other parts of the body and so cannot process alcohol. When mum drinks, so does the baby. People have to understand this. The problem is that much of the damage is likely to be done early in pregnancy. There is a video on the internet of an embryo that is introduced to a drop of alcohol. It stops moving for two hours. Goodness knows what damage is done in that time by one small drop of alcohol. People do not understand the risks they are taking. In that regard, the intervention from the hon. Member for East Worthing and Shoreham (Tim Loughton) was very welcome.

Nicola Blackwood, in a Westminster Hall debate on 2 February 2017, talked about improvements to industry labelling, and guidelines were issued in March 2017, but I am afraid it simply has not changed. It is not good enough. The labelling is not clear. It is still small. People do not understand it. We need to improve on that. That was a subject of my ten-minute rule Bill in 2015. Please can we have improvements there.

Nicola Blackwood also said in that debate:

“Health professionals are supposed to discuss it with pregnant women”.

We need to ensure that health professionals put much more emphasis on the issue and to consider the impact across the wider population. There should be greater understanding and awareness in the drinks industry. The industry makes great progress some of the time, but where are the notices in our pubs and restaurants telling people about the dangers of FASD? I want to know what happened to what the then Minister said in that debate, because we have not seen much progress. I think it was the Minister present, the Under-Secretary of State for Health and Social Care, the hon. Member for Winchester (Steve Brine), who responded to my hon. Friend the Member for Swansea East (Carolyn Harris) just a few weeks ago about the duties of midwives and other professionals. It is great that we have the duties, but what are the outcomes? That is something that needs to change.

I want to hear the Minister’s response, but I have one or two more comments. Sadly, women sometimes consume alcohol before they know that they are pregnant, and damage may be done during that early period, but others are unwilling or unable to stop drinking alcohol while pregnant. The damage to babies, the impact on families, the long-term effect, the direct costs to the public purse, and the lost productivity from FASD sufferers and carers are real problems for this country. It is a hidden epidemic, and it is time that it was out in the open. It is time that we had the full information. I said that I want prevention and greater support, so let us get the advice out there. I am sure that the Minister can make a lot of progress in that regard.

This is too big just for good intentions. Those suffering from FASD need firm commitments and action. This country has the fourth-highest prevalence of FASD in the world. Canada has invested 1.1 million Canadian dollars just for indigenous children who suffer from FASD. We have money going into dealing with alcohol-related problems, but not directly into FASD, so perhaps the Minister will take that away and consider it. FASD is an entirely preventable problem, and it is the biggest cause of disability in the UK. Minister, your move.

--- Later in debate ---

[Steve Brine]

The hon. Gentleman can certainly encourage me in that regard, and I will look at that in terms of the prevention paper. We would have to be guided by the clinicians and the CCGs on where they would see the greatest need for that provision to be. That is very much the spirit of the long-term plan, but it is not ideal that that centre is the only one. Surrey is near my constituency, but a long way from Sefton.

Finally, I wish to touch on the wider departmental policy engagement in this area. Our deputy chief medical officer, Gina Radford, has held roundtable meetings on the subject, which considered the future development of policy to improve prevention and support. I do not know whether the hon. Gentleman has been involved in that. These meetings were attended by experts in the field and, crucially, FASD service users. I thank NOFAS UK—the National Organisation for Foetal Alcohol Syndrome-UK—which has been helpful in supporting and contributing to these meetings, along with other charities working in this field. We are also providing wider support to children and families affected by alcohol misuse, through the children of alcoholic dependant parents programme, which I am proud of. It was one of the first thing I got to announce in this job. The previous Secretary of State working as one with the current shadow Secretary of State had managed to do this, which shows that cross-party working can happen in this Parliament between the two main parties—and there were no preconditions to it.

[Lyn Brown]

That is a career-limiting comment.

[Steve Brine]

The preconditions did not come from this side; I filled it in nicely. Through that programme, we are investing some £6 million over three years to support a vulnerable group, as part of our new alcohol strategy.

The Government take alcohol concerns, across the board, very seriously and even more so when they relate to pregnancy. We are making progress—I hope—to prevent future FASD cases, and trying to change the landscape on prevention and treatment for those affected. But there is not an ounce of complacency in us—there certainly is not in me. We will continue to work towards improvements in the area. I can promise the hon. Gentleman that and I know, given his consistent work in this space, he will make sure he holds us to that and continues to raise awareness of the dangers of drinking alcohol during pregnancy in this House and outside. I thank him for that.

Question put and agreed to.

Mental Capacity (Amendment) Bill [Lords]

Lyn Brown Excerpts

2nd reading: House of Commons & Money resolution: House of Commons & Programme motion: House of Commons & Ways and Means resolution: House of Commons
Tuesday 18th December 2018 Commons Chamber

[Matt Hancock]

All such considerations should be taken into account and looked at in Committee. We made changes to that area in the Lords, and we are determined to reach the right balance, but I take the hon. Gentleman’s important point seriously. Like anyone who has read the Bill, he will know that it makes a significant improvement in this area. Rather than cases being immediately passed on to the courts, there is a process in place both before the deprivation of liberty where that is possible, which is a big improvement, and then later on when the deprivation is questioned. I accept the thrust of the hon. Gentleman’s intervention, but the Bill makes significant progress, and if he has suggestions for how the details may be nuanced still further, we are all ears because this is very much a collaborative process.

[Lyn Brown (West Ham) (Lab)]

I am surprised that this Bill and the reforms to the Mental Health Act are not being considered at the same time. As I understand it, this Bill would allow clinicians and managers to detain somebody for up to three years without a renewal decision, which is much longer than is recommended for community treatment orders by the Wessely review. If both reforms are implemented, patients detained under the Mental Health Act could have the security of a shorter review period than those detained under this Bill. Will the Secretary of State tell me whether that is the Government’s intention or simply a mistake?

[Matt Hancock]

The hon. Lady is not quite right about the three-year period, because there are review points, meaning that it involves a twice-possible one-year extension, so she is not quite right about the relationship between that and what happens under the Mental Health Act. However, she makes an important point about the links between the Mental Capacity Act 2005, this Mental Capacity (Amendment) Bill and the mental health Bill that we propose to bring forward.

We considered putting the two Bills together, but we did not do that for two reasons. First, it would simply be a big Bill that included two separate regimes, and we would not want the full Mental Health Act powers to be applied across the board, and I think there is a broad consensus behind that. Secondly, the view of Sir Simon Wessely, who ran the review into the Mental Health Act, is that we need to get on with this while taking the time to get the Mental Health Act update right. Combining the two was seriously considered, and I considered it again when I became Health and Social Care Secretary and asked for further advice, but we came to this conclusion, which I hope the hon. Lady will support.

NHS: Hysteroscopies

Lyn Brown Excerpts

Tuesday 11th December 2018 Westminster Hall

[Lyn Brown (West Ham) (Lab)]

I beg to move,

That this House has considered NHS treatment of patients requiring hysteroscopies.

It is an absolute pleasure to serve under your chairmanship, Mr Howarth. We know that hysteroscopies save lives, but all too often they cause excruciating pain and humiliation because some of the women who need them are not treated with the dignity, respect or even humanity that they deserve.

As hon. Members will know, a hysteroscopy involves the insertion of a camera into the womb, past the cervix, to look for abnormalities and potentially enable a surgeon to remove them. It can be used to rule out a diagnosis of cancer when women are experiencing heavy periods, unexplained bleeding, repeated miscarriages or difficulties in becoming pregnant, and it is a core part of the treatment for debilitating conditions such as fibroids and health risks such as polyps in the womb. However, for some women patients it causes severe pain, a sense of violation and lasting trauma.

The NHS website states:

“A hysteroscopy is not usually carried out under anaesthetic… Taking painkillers such as ibuprofen or paracetamol…can help reduce discomfort after the procedure.”

Unfortunately, many women experience severe pain during hysteroscopy. It is usually done with little or no anaesthetic, and many women are told nothing to prepare them for the agony that awaits. I have passed the Minister many dozens of anonymous cases from women who have experienced terrible pain at the hands of NHS surgeons and were ill-informed or misinformed about the pain risks and offered little or no pain relief. I am glad to say that she has always received those stories with sympathy, empathy and understanding, but I am receiving more and more of them all the time.

This is not an issue that gets huge acclaim or interest in the press. People are finding our campaign and Facebook page simply because they need to. I will put just two experiences on the record today.

[Jim Shannon (Strangford) (DUP)]

As my party’s health spokesperson, I am interested in all health issues, but particularly in this one, so I commend the hon. Lady for securing the debate. The National Institute for Health and Care Excellence guidelines published in March recommend that women should be offered an out-patient hysteroscopy if they have symptoms or risk factors associated with gynaecological conditions. Does she agree that that recommendation has not been translated into GP referrals? More must be done to ensure that those in need of the procedure, for the purpose of early diagnosis or the removal of issues, are referred and treated in an effective manner. It has to be done early, and that is where we fall down.

[Lyn Brown]

I entirely agree, but the importance of early action is sometimes used to encourage or even force women to stay with a procedure that is causing them great pain because of the fear of what might happen afterwards. If the hon. Gentleman gives me a moment, I will illustrate that point.

In October, I heard from Jenny, who has undergone two hysteroscopies, both of which were traumatic. She told me:

“My first experience was shocking. I wasn’t prepared for it. The doctor didn’t warn me at all, and during the procedure I experienced the most unbearable pain ever and I almost fainted. I rose up from the bed that I was on and I shouted out. It felt like my insides were being ripped out. I wasn’t given the option to stop nor was I given any support.

The nurse was behind the doctor throughout the procedure and just watched as I suffered. After the procedure my legs were like jelly. I felt faint and in pain but I wasn’t even helped off the bed, I wasn’t even given a sanitary towel to help with the bleeding. I left the room and drove myself home in that state, I’m lucky I didn’t have an accident. I felt traumatised, in a state of disbelief and shock.”

What is even more shocking is that Jenny’s second hysteroscopy was also traumatising, even though she now knew the risks and had taken steps to ensure that the same thing would not happen again. She explained to her doctor what had happened and requested a female doctor the next time. Her doctor said that she would write that on the referral, and at her pre-hysteroscopy appointment Jenny was told that she could have an injection to numb the area. She was reassured and trusted the female doctor to be more careful, but the procedure was—again—horribly traumatising. Jenny said:

“My god it was shocking, I once again shouted out and raised from the chair this time. The nurse was trying to calm me down…while the doctor said she would stop at any time but she needed to go in again and take a biopsy. I was told that if she didn’t...the procedure would be incomplete and I would be left worrying that it could be cancerous. So I endured more excruciating pain.

I wasn’t given the option to come back and have the procedure done under general anaesthetic, which I have now found out could have been an option. I felt tricked into having the procedure.

I suffered with terrible pain for a week after. Mentally I was left traumatised and still am to this day.”

Understandably, Jenny is now scared about any gynaecological procedure—including smear tests, which she knows are essential for her health.

This autumn, Annie got in touch. Annie had had ultrasounds and smear tests before; like many others, she was given literature about her hysteroscopy that made her think that it would be no different. She was advised just to take paracetamol and ibuprofen before the appointment, and she felt confident. She told me:

“As the procedure began, I felt instant pain, so unexpected and intense that I began to cry and panic within seconds. I was asking the nurse if this was normal as I was so scared there was something wrong, and she nodded to reassure me. I couldn’t get my words out, I was panicking, going into shock. She offered me her hand to squeeze through the pain. I tried to be strong, but I couldn’t, I was yelling out in pain, shaking and crying.

The nurses were telling me to relax my legs but it was impossible. When the Dr began the biopsy it was by far the worst pain I have ever suffered. I was hyperventilating and the nurse was telling me to breathe, but I couldn’t. I endured pain for 15-20 minutes.

I was asked to wait before I stood up, and I was so traumatised and sobbing, I just couldn’t move.

After a couple of minutes I got up and had to put on a sanitary towel and get dressed. It was hard—I was disoriented and shaking.

I sat with the Doctor who told me that due to it being too painful I have to have polyps removed under general anaesthetic. I could barely talk to him due to shock and tears. I wasn’t even offered water, and nobody asked me how I was getting home.

I cried from leaving the hospital at 2 until my wife arrived home at 6, at which point I broke down uncontrollably in her arms. I felt violated and abused, and the procedure felt very very wrong.”

As we know, women are still having these terrible experiences. I received another story in the past two weeks, but I do not have time to share them all. Women are still leaving NHS care feeling violated, and it ain’t going to stop unless we choose to stop it. I am very grateful to the Campaign Against Painful Hysteroscopy for providing support to those women and making sure that they are heard. The campaign group’s petition has received more than 47,000 signatures, which demonstrates that this is not an unusual, occasional thing.

We have four asks. First, if we are to stop patients from being violated or misled, all NHS trusts need to provide accurate information that enables women to give genuinely informed consent. I was pleased to hear from the Minister that her Department is developing tools to improve hysteroscopy care; I look forward to hearing her elaborate on those tools, but involving patients will be essential to making them work. The campaign wants to see a new patient information leaflet made available across the NHS. Campaigners have been working with the Royal College of Obstetricians and Gynaecologists and with specialists to create an appropriate leaflet that patients who have had negative experiences of hysteroscopy have helped to write, but it still needs to be rolled out.

The leaflet needs to be honest with patients. It needs to warn that there is a real risk of severe pain during out-patient hysteroscopy, and explain the risk factors that make pain more likely. They should tell patients that they have the right to ask for the procedure to be stopped at any time and for it to be rescheduled with a full anaesthetic. Hospitals should no longer have any excuse to hand out literature stating there will only be

“mild discomfort, just like a smear”.

After they have read through the leaflet, patients should be given an opportunity to discuss with a trained doctor what is going to happen during the procedure—whether a sample is going to be cut out for a biopsy, the risks involved, and the anaesthetic choices available. The campaign suggests that both patient and doctor should then sign a consent form to confirm the discussion has taken place and the choices the patient has made.

Our second ask is for improved training to enable better and more consistent care. We know that hysteroscopy can be a painless experience for women—some women will experience little pain from hysteroscopy even with minimal anaesthetic—but as we have heard, for others it will be like torture. There are some risk factors—older women and women who have never had children are far more likely to experience severe pain during hysteroscopy—but we cannot tell in advance what someone will experience, and that means we have to improve the guidelines and raise standards through training. The current national guidelines, produced by RCOG and the British Society for Gynaecological Endoscopy, do not recommend several forms of anaesthetic that I am told could be helpful. That has to be looked at, because, for some patients, stronger forms of anaesthetic might be the only way to have a hysteroscopy without experiencing severe pain.

Once we have changed the guidelines, investment in training will be needed to embed new best practice across the NHS. Hysteroscopy nurses should be routinely asking for patients’ pain scores during the procedure, so that informed decisions can be made about whether to continue or to stop. We need to audit pain scores and keep records of how comfortable the surgeon was with continuing, so that we can monitor whether more training is necessary. It should be a basic element of training that hysteroscopy teams should simply stop the procedure if a patient is suffering severe pain—not just hold them down—and reassure the patient that the procedure will be promptly rescheduled with more effective anaesthesia, rather than using the threat of possible undetected cancer to encourage her to continue.

Our third ask is for enough resources to enable all NHS bodies, everywhere in the country, to give women the choice between different anaesthetics when they need a hysteroscopy. The problem is not just flawed guidelines and inadequate training. Trusts may be loth to enable anaesthesia beyond over-the-counter painkillers or local anaesthetic simply because other methods are more expensive. Some are in-patient procedures, and some require clinicians to have specific training, and we all know that that comes with extra costs.

Our fourth, and possibly most important, ask is for a change to NHS incentives for hospitals. According to the information we have, the Department of Health’s quality, innovation, productivity and prevention tariff encourages trusts to promote hysteroscopy without anaesthetic, rather than offering an open choice to women. Annex F to the 2017 to 2019 national tariff payment system is explicit:

“For...diagnostic hysteroscopy...the aim is to shift activity into the outpatient setting.”

The best practice tariff

“is made up of a pair of prices...one applied to outpatient settings, the other to...elective admissions. By paying a higher price for procedures in the outpatient setting, the BPT creates a financial incentive for providers to treat patients there.”

The national target is for the risky out-patient hysteroscopies to increase to 70% of the total, up from 59%. The Department for Health is not working to reduce pain and trauma for women—it is incentivising hysteroscopies without effective pain relief and is taking our choices away. It has to stop, and I hope the Minister will look at how she is going to stop it.

Those are our four asks of the Government, and I think the Minister will agree with me that they are entirely reasonable. I do not believe they would be massively expensive to implement, and we should also consider that current NHS practices may not be cost-effective. Women who have undergone a painful hysteroscopy may not return for other gynaecological tests and procedures. If they do not have those early preventive interventions, more costly interventions will be needed later.

Some action has already been taken. The issue has been raised with the national medical director of NHS England. I thank the Minister for that, and for launching her women’s health taskforce, which I would be interested to hear more about today.

I would like to say something about the history of the hysteroscopy campaign and the amazing women who have led it—I am delighted to see some of them in the Gallery today. With their support, I have regularly been raising this issue in the House for four years now. I cannot say progress has been easy or swift. At times I—we—have been ignored by the Government, despite strong cross-party support every time I have raised the issue. I have been left concerned that officials at the Department of Health, and some senior NHS managers, have not been willing to engage with the problem of women’s pain when the NHS is under financial stress.

However, this last year has been more hopeful. The Minister met me and a core group of campaigners last year, and listened with compassion to their stories. I believe she has taken this cause as her own. I am waiting with bated breath to hear what she is going to say today, and to hear about the rapid and dramatic progress we are going to be able to make on this issue over the coming year.

--- Later in debate ---

[Jackie Doyle-Price]

I give way to the hon. Member for West Ham.

[Lyn Brown]

I am really grateful to the Minister for her response thus far. I have found her, to be honest, to be the only Minister I have been able to have proper conversations with about such issues who has understood them. I am grateful. However, I honestly believe that we need to do something about the fourth ask. I am a fairly strong woman, but even I was in such a position: I had requested a hysteroscopy with general anaesthetic, but the hospital spent an hour of its time trying to talk me into having one without anaesthetic. I am in a high-risk category of being an older woman and of not having had a child, but I had to beat off the medic who was trying to use every piece of emotional blackmail that she could to get me to agree—the cost to the NHS, taking up resources, the possibility that I had cancer or of a long wait, and so on. It was an uncomfortable conversation. If we do not get rid of the perverse financial incentives, even women as strong as me will be browbeaten.

[Jackie Doyle-Price]

I thank you, Mr Howarth, and the hon. Lady for the generosity of allowing me to recover myself. We can tell it is December, because we all have colds—thank you very much.

In the short time I have left, I will address the specific issue of the tariff and the possible incentives, which I know the hon. Lady is particularly concerned about. She is right that there is a best practice tariff that incentivises care in a day-case setting with no anaesthetic, just pain relief. That tariff is agreed with the Royal College of Obstetricians and Gynaecologists, but it is revising its guidance. I want to engage the hon. Lady and the campaign group in that process through the women’s health taskforce, so that we can all satisfy ourselves that the guidance is appropriate. She is absolutely right: if someone such as her or me—women Members of Parliament—cannot look after ourselves, neither can anyone else, and I have heard many tales of people often feeling diminished at the hands of the NHS. She and I have the opportunity to use our voices to ensure that women get a better deal.

I again thank the hon. Lady for all her work. I look forward to continuing to work with her to ensure that all women who face that procedure can do so with sensitive treatment and appropriate pain relief.

Question put and agreed to.

Autism and Learning Disability Training: Healthcare Professionals

Lyn Brown Excerpts

Monday 22nd October 2018 Westminster Hall

[Daniel Zeichner (Cambridge) (Lab)]

I beg to move,

That this House has considered e-petition 221033 relating to autism and learning disability training for healthcare professionals.

It is a pleasure to serve under your chairmanship, Dame Cheryl. You are an expert in this issue and have campaigned on it for many years. I am sure you wish you could be contributing to the debate.

The petition text is particularly important, so I shall start by reading it to inform hon. Members fully and to put it on the record. Paula McGowan, the petitioner, wrote:

“My son Oliver was only 18 when he died in hospital on 11 November 2016. I believe his death could have been prevented if his doctors and nurses had received mandatory training. He had autism and a mild learning disability, and they weren’t trained to understand how to make reasonable adjustments for him. One in four healthcare professionals has never had training on learning disability or autism. This is unacceptable. Two thirds want more training, and one in three think a lack of Government leadership is contributing to the problem of avoidable deaths. The Government must ensure all healthcare professionals get mandatory training to address the huge health inequalities facing people with autism and a learning disability.”

That is the wording of the petition which I speak to, and I open the debate on behalf of the Petitions Committee. I point out to the many people watching or following the debate that in the main Chamber, the Prime Minister will shortly make a statement on last week’s EU summit and that many hon. Members who would have liked to contribute to this important debate have faced a difficult choice, which is perhaps why we are relatively few.

I will start with some background. In 2016, Oliver McGowan died in hospital. He was autistic and had a mild learning disability, mild cerebral palsy, and partial seizures. I will read his mother’s account of what happened. She is waging a powerful and brave campaign. As she told me, mothing can bring Oliver back, but she wants to ensure that lessons are learned properly, so that in future, others will be safer. She would very much have liked to deliver the account herself, but under Parliament’s current rules, it is not possible for her to speak in the debate. Her account is lengthy, but it is important that it is heard in full. This is Oliver’s story, in his mother’s words:

“Oliver enjoyed college, playing football and was an amazing athlete, in training to become a Paralympian. Oliver loved life and being with his family. He was bright, achieving GCSE and BTEC qualifications, was a member of the school council and head prefect. He was a fit and active teenage boy and yet on the 11 November 2016, aged 18, he died in Southmead hospital, Bristol, in circumstances that his family believe were entirely avoidable. When we brought him to A&E with absence type seizures, we thought he would be in hospital for a couple of days at the most, and he would go to college the following week as planned.

Oliver had mild hemiplegia, absence type partial seizures and a very mild learning disability as a result of having meningitis as a baby. He also had high functioning autism. His additional needs were not obvious to most people, but anxiety was a challenge for him.

When Oliver turned 17, his absence type seizures increased and on several occasions he had to spend time in hospital for investigations. His seizures caused him to become anxious, scared and agitated and due to this, his high functioning autism became more obvious.

In October 2016, aged 18, Oliver was admitted to an adult hospital having absence type partial seizures. Oliver explained the seizures as being like several bees buzzing down one’s ears whilst you are trying to think and go about your day; incredibly frustrating and distracting. He was conscious throughout and was very scared and anxious.

A&E staff were presented with Oliver’s hospital passport, detailing how his autism and learning disability affected him and how to make reasonable adjustments. It also detailed his allergies to antipsychotic medications. This was not read but placed in a drawer without a glance.

Several doctors were talking to Oliver at once, using complex language that was hard to understand. When Oliver wanted to walk around (a normal part of his seizure activity) he was restrained by several members of staff, which heightened his anxiety.

Oliver had said clearly to the ambulance staff, he was happy to go to hospital, but he did not want to be given antipsychotic medicine, giving sound reasoning, stating ‘they mess with my brain and make my eyes go funny’. He said this again in the hospital, as did we, providing letters from previous consultant doctors explaining Oliver’s reactions to medications and busy hospital environments.

Previously, when these exceptionally strong medications had been trialled to help Oliver’s anxiety in seizure, we had seen Oliver’s behaviour change in a way we had never seen before: hallucinating, tearing at his skin with significant increase in seizure activity. We knew that Oliver was not psychotic or mentally ill. Previous senior psychiatric consultants had said the same thing, that Oliver was not psychotic or mentally ill but a teenager who had high functioning autism and a mild learning disability impacted by partial seizures. They wrote he was sensitive to medications, especially benzodiazepines. The doctors in A&E wrote ‘antipsychotic medication’ in red in the allergies box on all of Oliver’s ICU patient 24 hour care charts. The A&E doctor also sent an email to all doctors treating Oliver that he was sensitive to all antipsychotic medications.

Oliver was sedated and placed on life support in A&E to investigate his seizures. A few days later, whilst Oliver was still on life support and against Oliver’s and our strong wishes, he was given an antipsychotic drug called Olanzapine. Doctors said it was to control his anxiety when he woke up, even though we explained to them that when any seizures had finished Oliver immediately returned to his normal mild mannered self.

Oliver never woke up; the Olanzapine caused him to develop Neuroleptic Malignant Syndrome, or NMS. His brain swelled so badly it was bulging out of the base of his skull causing irreversible brain damage. We were told that Oliver would be blind, deaf, no memory, no speech and would be reliant on breathing machines including tube fed.

Oliver died on Armistice Day, a fitting day given Oliver’s father is a serving senior officer in the Air Force and Oliver had lived his whole life as a military child. We can all agree that Oliver was certainly a very brave young man.”

Paula goes on to say:

“If the doctors and nurses had been trained to understand how to make reasonable adjustments for him (someone with autism and a mild learning disability), they would have known how to adapt the environment to meet his needs. There would have been no need to use a ‘chemical restraint’ and he would not have had the NMS reaction to this type of medication.

If doctors and nurses had had the training to support Oliver’s medical, social and emotional needs effectively, they would have known how to adapt their communication, using humour to settle his anxiety in a crisis, and de-escalate the situation further. They made a decision about how to manage potentially challenging behaviour as Oliver came out of sedation. They did not properly explore alternatives to using antipsychotic medication. A senior safeguarding nurse had advised a non-pharmaceutical approach. There was time to do this and consult with other professionals who knew Oliver best and were treating him in the community, as he was sedated and stable in intensive care. This did not happen although there was time.

I believe that ignorance of learning disability and autism cost Oliver his life, and we must never allow this to happen again. I believe that if Oliver hadn’t had a diagnosis of autism and a learning disability, and presented in hospital with the same symptoms, he would not have been prescribed an antipsychotic. Oliver’s death is not an isolated case, with evidence in relation to learning disability showing 1,200 avoidable deaths every year, and women with a learning disability dying nearly 30 years earlier than the general population.”

[Lyn Brown (West Ham) (Lab)]

I can see that my hon. Friend is coming to the end of his peroration, so I thought I would intervene briefly. I understand that the Government have announced a review, but does he not agree that something a little more urgent is needed?

[Daniel Zeichner]

I am not coming quite to the end, but I have almost reached the close of Paula’s statement. I think my hon. Friend will understand from the suggestions later in my speech that I absolutely agree with her conclusion.

--- Later in debate ---

[Chris Skidmore (Kingswood) (Con)]

Thank you for calling me to speak, Dame Cheryl. I recognise your expertise and knowledge in this area. As one of the leading Members of the House, you have worked tirelessly to represent the rights of those with autism, and you took the Autism Act through Parliament. My comments will pale in comparison. Your position today prevents you from speaking, but I want those watching the debate to know how indebted Members on both sides of the House are to you for your efforts.

I speak in my capacity as the Member of Parliament for Kingswood, near Bristol. My constituent, Paula McGowan, has worked tirelessly and courageously to highlight the tragic death of her son, Oliver McGowan, on 11 November 2016. Paula’s work to establish Oliver’s campaign and call for mandatory autism and learning disability training for NHS professionals led to the creation of a petition, which had been signed by 51,310 people as of around 3 pm. I am extremely grateful to the Petitions Committee for scheduling this debate on that petition.

I speak as Paula’s local representative, but what she has achieved in the face of such extreme grief and anguish is so remarkable that, in all honesty, she should be telling Oliver’s story in this debate. That story is awful and harrowing, but it needs to be told. I am grateful to the hon. Member for Cambridge (Daniel Zeichner) for putting Paula’s testimony on the record. She sent me some additional personal words. It is important that I place those words on the record, too, not only for the benefit of Members present but so that they stand as a testament to Oliver and so that his death is remembered eternally in the House’s official record, Hansard.

Paula states:

“From the moment Oliver was born, we knew that he was special and our love for him was overwhelming. Oliver was born premature and developed meningitis at three weeks of age. He was very ill and we were told they did not expect him to survive. However, Oliver began to recover. Everybody who came into contact with Oliver warmed to him and could not resist spending time with this baby.

Sadly, Oliver developed a second episode of meningitis and was incredibly ill. Amazingly, against all odds and many months of hospital treatment, Oliver’s strength and determination shone through and he survived once again, and as always with that beautiful heart warming smile that everybody was drawn to. Oliver—as a result of an infarction caused by the meningitis—was left with mild cerebral palsy, focal epilepsy and later on a diagnosis of high functioning autism.

Oliver’s disabilities did not hold him back. He had a can do attitude and amazed everybody with his achievements. He played for the South and North West Centres of Excellence England development football squads. He was a registered athlete with the Power of 10 and was ranked 3rd best in the country for athletics. Oliver was a member of Team Bath and was being trained to become a Paralympian.

Oliver was a natural leader and became a prefect and chair of the school council, later college. He attained several GCSE and BTEC examinations. He went on to attend National Star College in Cheltenham. Their opinions of Oliver were very complimentary, writing how he was often mistaken to be a member of staff; how friendly and kind he was, supporting students who were less able than himself; his wicked sense of humour; and the aspirations they had for him to start a sports course at a local ski centre.

Oliver brought so much happiness and fun to our lives; he always saw the best in everything and taught all of us how to look at things differently. Oliver never failed to light up a room with the sound of his laughter. He wanted to make everybody happy and did his best to achieve that. Despite his limitations, he never complained or asked, ‘Why me?’ He accepted everything and always with a smile. His courage and enthusiasm was inspirational. We were told by his neurologist that Oliver had a full life expectancy and it was expected he would live an independent life with a little support.

On 15 October 2015, Oliver was admitted to a children’s hospital, having what we—his parents—and college staff recognised to be simple partial seizures. These caused Oliver to be anxious, agitated and confused. After several weeks of tests Oliver was discharged home and given sertraline—an antidepressant medication—to treat his anxiety. We were surprised as Oliver was not depressed. Once this medication was increased, it caused a change to Oliver’s mood and increased his seizures greatly.

He was admitted back to the same hospital on 15 December 2015, but this time was given antipsychotic medications. The doctors were misunderstanding Oliver’s autistic behaviours to be an ictal psychosis, and his normal autistic obsessions to be delusional behaviours. The effect on Oliver was catastrophic. Oliver’s seizures threshold and anxiety deteriorated and he was eventually held against his will under the Mental Health Act, section 2. We challenged this on numerous occasions, stating we felt it was the drugs that were causing the changes to Oliver’s mood and seizures.

A psychiatric bed could not be found and doctors decided to remove the antipsychotic medications. Within days Oliver’s mood and seizure activity improved and he was discharged back home into our care. A community psychiatrist wrote Oliver was sensitive to antipsychotic and benzodiazepine medications.

On 15 April 2016, Oliver was readmitted back to the same hospital having simple partial seizures and was anxious. Sadly, Oliver was again given antipsychotic medications, one or more of which caused a serious side effect called oculogyric crisis. He was left like this for several hours as the doctor at first believed it was behavioural. After four hours he was given procyclidine medication. Again, Oliver’s mood changed significantly. He was hallucinating, having up to 30 seizures a day—something we had never seen happen—and had problems urinating, extreme high blood pressure readings and sweating, all of which were linked to medications.

We strongly believed the drugs were the cause of the decline in Oliver’s mood difficulties. It was obvious that doctors and nurses had little to no understanding of autism and how autistic behaviours could present in a person with ongoing seizures. When in seizure, Oliver was always fully conscious, and because he had no control of the seizures they caused him to be frustrated and scared.

At my request, Oliver was transferred to a specialist adult hospital, which I thought would have understood Oliver’s epilepsy better. Oliver had been provided with a letter stating his reactions to previous medications. Sadly, the use of physical restraint was increased with up to eight staff being involved. Oliver was suddenly not allowed any privacy with his personal care. He had three staff sat around his bed and he was kept in a darkened room. Oliver was very frightened and he told me just how scared the staff were making him feel.

Oliver was again given different antipsychotic medications and consequently detained against his will and transferred to a specialist mental health ward. The different approach from skilled staff allowed Oliver to improve within days. The words from staff including doctors from the unit were that Oliver was not psychotic or mentally ill, and that his placement there was a total misuse of the Mental Health Act. They reduced all antipsychotic medications and Oliver was discharged after a few days into the care of a specialist learning disability team, again with a letter saying that he was sensitive to antipsychotics and benzodiazepines.

The team was very supportive and specialised in people with autism and learning difficulties. A consultant psychiatrist in learning disability wrote that Oliver was not psychotic or mentally ill. He believed Oliver’s behaviours were a result of autism and mild learning difficulties and an environment that was not adapted to meet his needs.

Sadly, on 16 October 2016, Oliver had a cluster of seizures and was admitted to an adult general hospital. Oliver told ambulance staff and also doctors in A&E not to give him antipsychotic medications as they messed with his brain and made his eyes go up. He was reassured by doctors they had no intention of using those medications. We gave doctors a folder of supporting letters stating Oliver’s reaction to antipsychotic medications, and it was subsequently written in bold red ink on Oliver’s medical care sheets he was intolerant to all antipsychotics.

Oliver was intubated. The safeguarding officer was consulted on how to manage Oliver’s anxiety when sedation was reduced. His advice to the doctors was a non-pharmaceutical approach and to use soft handcuffs. We were told we should be present as we would be able to reassure and comfort him. We were told that most people would become highly anxious when woken from being sedated. This advice was not listened to and sedation was reduced without our presence. According to staff, Oliver became anxious. He would have felt scared waking to find tubes in his throat and in unfamiliar surroundings without familiar faces. Full sedation was increased.

We were consulted by a neuropsychiatrist who had met Oliver for two 10 minute appointments in the community. She asked us about giving Oliver an antipsychotic. We made it very clear about Oliver’s previous reactions to this type of medication and that she did NOT have Oliver’s or our permission to administer any antipsychotic medications. Despite this, Oliver was given the antipsychotic medication olanzapine at a low dose that evening without our knowledge. The next day, we again made it clear to all doctors and nurses that they did not have Oliver’s permission to administer this.

Oliver, over the next few days, developed a temperature of 42^°. Because doctors said his liver function was elevated he was not given any medication to control the temperature other than a light blow up mattress filled with cold air. This was not effective. Doctors could not understand the decline in Oliver’s condition and they sent him for a scan of his liver and lungs. Unfortunately, it was several more days before they scanned his brain. It was so badly swollen it was bulging out the base of his skull. We were told Oliver had neuroleptic malignant syndrome, a rare but serious side effect of antipsychotic medications.

A week later, the decision was made to turn Oliver’s life support machines off. Oliver passed away several days later on 11 November 2016: Armistice Day—poignant given we are a military family.”

Paula continues:

“Oliver’s was a life wasted due to doctors not communicating effectively with family and practitioners who knew him well and who were in daily contact with the hospital. We believe the doctors were arrogant and ignorant and believed they knew Oliver better than his parents. They did not consult wider, when there was ample opportunity to do so.

We have since been told by the doctor who administered the antipsychotic drug that she would have given it regardless of our wishes, as she believed it was in Oliver’s best interests, and she would do the same thing again given the same situation knowing that Oliver has lost his life. We understand that many people receive the medications that Oliver was given, often for managing a mental health condition, and do so without suffering the effects that Oliver had. In Oliver’s case, we had clear understanding that he was sensitive to these medications and we believe they should not have been prescribed.

We believe that Oliver’s death was very preventable. We believe that Oliver was given excessive drugs due to medical staff not understanding autism impacted by seizure activity. They did not ever try to adapt the environment to meet his needs, but used excessive restraint methods. They failed to make any communication with community-based professionals who were working with Oliver on a daily basis and knew him well.”

A later inquest into Oliver’s death concluded that the care Oliver received in the lead-up to his death was “appropriate”. It stated that despite warnings from Oliver and his parents, the development of complications from medication could not have been predicted. As a local Member of Parliament, I was in contact with Paula after Oliver passed away to support her when she approached the local police and coroner’s office to ask for an investigation into the death of her son. I will continue to offer all the support that I can.

In spite of that inquest’s conclusions, the Government’s learning disabilities mortality review programme, which investigated Oliver’s case, highlighted the challenges that vulnerable people such as Oliver still face in gaining access to appropriate care. There remain serious disparities in the quality of health support and care received by people with autism and learning disabilities. The evidence shows, as has already been mentioned, that people with learning disabilities die at a far greater rate than others. Often, that can be prevented with the right care and support and better awareness and training.

Recent reports from Mencap, which has been recognised for its ongoing efforts and campaigns, found that one in four doctors and nurses has never had any type of training on learning disability. Clearly, that is unacceptable. Every person should receive the same high quality of care, whether or not they have a learning disability. Although we have made progress in our collective understanding of autism and learning disabilities, much more needs to be done to ensure that vulnerable people receive the right support from our healthcare system when they need it most. I am encouraged that the Government have accepted all the recommendations from the learning disabilities mortality review, including recommendation 6, which proposes the introduction of mandatory training for all health and care staff. I am also pleased that they have committed to delivering that training in partnership with people with experience, including families and parents like Paula.

I welcome the Government’s proposals for a consultation on options for delivering that essential training to staff, which is due to be completed by the end of March 2019. With that in mind, I would welcome it being arranged for Paula to meet the Minister to discuss Oliver’s campaign and its consequences, and for this work to continue. I would also welcome the Minister and the Department continuing their close working with Mencap, the National Autistic Society, other charities and relevant organisations, and indeed Members of Parliament such as the Solicitor General, my hon. and learned Friend the Member for South Swindon (Robert Buckland)—he is in his place but his ministerial role affords that he cannot speak in the debate—who have personal experience of autism. It is right to draw on that.

[Lyn Brown]

I have listened to the hon. Gentleman and have been really affected by his speech; I am sure he has been affected as the local MP. I pay tribute to him for how he is putting his case, but does he not agree that the review is unnecessary and that what we actually need is some action now?

[Chris Skidmore]

I agree that we need clarity, not only extra guidance. The review is one step in a journey that has yet to be completed. I own up to this, having been a Minister previously: there is a commitment to looking at guidance and training, but I am concerned with the implementation. Going forward, we could produce all the training, guidance and material we want, but how will we monitor the outcomes? What are we seeking to achieve?

A couple of months into my job as a Minister in the Cabinet Office, having previously been secretary of the all-party parliamentary group for disability as a Back Bencher, I wanted to look at how we could increase and encourage electoral registration among those with learning disabilities. The answer I got was, “Well, there is guidance out there already, Minister. The Electoral Commission has produced documentation.” However, it was patently clear to me that it was not being implemented in polling stations across the country. I would like to see a commitment from the Minister not just for consultation and guidance to be produced but to ensure that we have accountability. The Care Quality Commission must be involved, and people must be judged on the standards introduced; this must be followed through.

In conclusion—this may chime with what the hon. Member for West Ham (Lyn Brown) said—I return to the words of Paula McGowan:

“If the guidelines and principles from NHS England’s STOMP—stopping the over-medication of people who have learning disabilities—project had been followed with healthcare professionals being able to listen to family and specialist colleagues, then we firmly believe that Oliver would still be here today. We believe that Oliver’s premature death should be in the public’s interest, and I challenge the Government to: ask people with a learning disability, autism or both, their families and carers for their opinion and concerns about treatment; listen to all involved and show respect to those opinions and concerns; and do something about it and work in partnership with us. Specifically, NHS professionals who provide specialist care in learning disability and autism should: put people at the heart of all decision making; respect our point of view; not make decisions without us; and enable us to understand complex decisions in a way that is relevant to all and provide information and explanation.

In particular, check if your patient has a hospital passport. Respect your patient by getting down to the same level as them—don’t stand if your patient is sitting. Give them personal space. Modify your language so that it is clear and precise, and don’t use medical jargon. Check your patient has understood what you are saying. Effectively listen to your patient. Give your patient time. Make them feel valued and included in their treatment plan. Mostly”—

above all—

“offer reassurance. In addition, liaise with healthcare colleagues in general hospitals to raise awareness and understanding of learning disability, autism and the principles of STOMP. And, above all, do everything in your power to prevent a story like Oliver’s from having to be told again.”

From my own point of view, I hope that we can all work together to ensure that we do not have to stand here again, making the case for change. Let us support Oliver’s campaign and ensure that his death marks a watershed moment and a turning point in how we treat those with autism and learning disabilities in the NHS.

Perinatal Mental Illness

Lyn Brown Excerpts

Thursday 19th July 2018 Westminster Hall

[Dr Paul Williams (Stockton South) (Lab)]

I beg to move,

That this House has considered perinatal mental illness.

It is a pleasure to serve under your chairmanship, Mr Davies. I and my colleague on the Select Committee on Health and Social Care, the hon. Member for South West Bedfordshire (Andrew Selous), are delighted to have secured this important debate, and I thank the Backbench Business Committee for granting it.

Nothing can prepare someone for the challenge of becoming a new parent—the sleepless nights, the new responsibility and the feeling that they suddenly have to put their old life on hold. As I have found since becoming a parent, a few months before my 40th birthday, raising a newborn child can be hugely rewarding. There is little that compares with the joy of seeing a child grow and develop. For most of us, it is a deeply fulfilling experience. Still, becoming a parent can have a dramatic impact on many people, in terms of both the stresses they experience and the impact it has on their relationships and their emotional wellbeing.

I will talk about how the Government can act to improve the lives of thousands of mothers in England who do not receive adequate support for perinatal mental health problems. The perinatal period is the time during pregnancy and the run-up to a birth, and the time immediately following the birth of a new baby. As a general practitioner as well as a parent, I have worked to provide mothers and newborn babies with the support and care they need in the perinatal period. It is a crucial time not only for the mother, but for the development of her child. It is also a time when great pressure is placed on mothers to care for their baby and simultaneously to be happy, excited and on top of life.

According to the mental health charity Mind, about one in five women experience mental health problems during pregnancy or in the year after they have given birth. Those mental health problems can come in many different forms—from eating disorders, to post-traumatic stress disorder, to anxiety and depression. If left untreated, the mental illnesses that these women experience can affect their whole lives, their ability to cope with being a parent and their relationships within and outside their families. The illnesses can affect attachment and bonding with the baby. At their extreme, perinatal mental health problems can lead to suicide and to long-term health problems for a child.

[Lyn Brown (West Ham) (Lab)]

I understand that one fifth of parents stated that they were not asked about their mental or physical health during the six-week post-natal check-up. Does my hon. Friend think that might be because GPs are massively overburdened and simply do not have the time to deal with this essential issue?

[Dr Williams]

I thank my hon. Friend for raising that point. I will refer to it later in my speech. I think the pressure on GP services that she has identified is one reason, but there are some other reasons to do with training and perhaps resources.

--- Later in debate ---

[Dr Williams]

I thank my hon. Friend for making several points, including that a child whose mum experiences mental health problems is more likely to develop mental health problems themselves. Despite significant Government investment in specialist perinatal mental health services, significant inequalities remain throughout the country and there are still areas where, as he said, one quarter of women with significant mental health problems are not able to access specialist facilities. I hope we will get the chance to talk more later about access to specialist services.

Other adverse childhood experiences include domestic violence; parental separation or divorce; being a victim of physical, sexual or emotional abuse; physical or emotional neglect; or growing up in a household where there are adults experiencing alcohol and drug problems. Mental health problems in a mother can have as significant an impact on a child as some of those other problems. The term ACEs was originally developed in the US, but other studies have reported similar findings in England and Wales. Those ACEs have, as my hon. Friend has said, been found to have lifelong impacts on health and behaviour. They are relevant to all sectors and involve all of society.

An ACE survey of adults in Wales found that, compared with people who had experienced no ACEs, those with four or more were more likely to have been in prison; develop heart disease; frequently visit their GP; develop type 2 diabetes; have committed violence in the last 12 months; and have health-harming behaviours, such as high-risk drinking, smoking or drug use

Children’s exposure to adverse and stressful experiences can have a long-lasting impact on their ability to think and to interact with others, and on their learning. Health and societal inequalities that develop during early years stick with children for life. That is why I chair the APPG for the prevention of adverse childhood experiences. It is also why the identification and treatment of maternal mental health problems is not only important for the individual mother but crucial for all of us in society.

National Childbirth Trust research shows that as many as half of new mothers’ mental health problems are not picked up by a health professional. That is not to say that health professionals are not asking—they often are. There are many fantastic nurses, GPs, midwives, health visitors and others who provide care during pregnancy and during the post-natal period. However, those services, as my hon. Friend the Member for West Ham (Lyn Brown) has said, are overstretched. We all know how hard-pressed GP services are. The Government have acknowledged the problem and have promised to recruit an extra 5,000 GPs by 2020. However, they are failing miserably and are struggling to even maintain GP numbers. NHS Digital reports a decrease in full-time equivalent GPs from March 2017 to March 2018.

Perhaps a little less well known is the dramatic fall in the number of health visitors. Since 2015, there has been a loss of more than 2,000—almost a 20% drop—so each health visitor has to work harder. I commend health visitors for the work they do but, overall, women are experiencing a drop in services.

Staff numbers are part of the problem, but there are many other reasons why the problems of almost half of women with perinatal mental health problems are not identified. Stigma, and the societal pressure to be seen to be coping, makes it hard for some women to disclose that they have a mental health problem. Also, as the hon. Member for Thirsk and Malton (Kevin Hollinrake) has said, health services do not always ask women about their mental health in the most sensitive way. That is sometimes because they are pushed for time and sometimes because they have not been trained to sensitively and gently probe behind the “I’m okay” response that people are primed to give.

As a result, the hidden half of new mums with mental health problems struggle on alone, often afraid to reach out for help. The overwhelming majority of women who experienced a mental health problem said that it had an impact on their ability to cope or look after their children, and also on their family relationships. The mother of a woman suffering from post-natal depression told me:

“As a parent, watching a child go through that and feeling unable to make it better is a horrible experience. Health professionals need to make sure that husbands, partners and the family know about the likelihood of such depression…and know where to get support and help.”

Perinatal mental illness has an immediate effect not only on mothers; it can have lasting consequences for relationships in the wider family. With the added pressure to be a perfect mother, and the expectations from many that come along with that, it is no wonder that so many women feel unable to cope. One constituent described this to me:

“I remember comparing myself to the younger mums who would turn up to the mother and baby groups looking fresh and without a care in the world, making motherhood look like a walk in the park. Although my son was thriving, I felt like I was failing, because I wasn’t like the young mums or the ones in those perfect baby ads. I didn’t want to share my feelings because I felt I’d been a failure in comparison to them. I believe the pressures of our professions and the guilt of parenthood traps us into a dark place.”

It is often the most vulnerable who receive the least support, with evidence suggesting that those in areas of higher deprivation are less likely to be asked about their mental health. In dealing with this issue, the Minister has the chance to fulfil two parts of her ministerial brief, because investing in perinatal mental health will help to improve mental health and reduce health inequalities.

I have described the problem, but what are the solutions? Identification is key. Regardless of what services may or may not be out there—from specialist mother and baby units, to secondary care perinatal mental health teams, to cognitive behavioural therapy and the prescription of medication—half of women with the problem are not even identified. That is where I believe we need to start.

The disinvestment in health visiting is significant; there can be no solution to the problem while health visiting is not properly resourced. Will the Minister say what she intends to do within her Department to ensure that local authorities are adequately funded and supported so that there is investment in crucial services for children aged 0 to 19, rather than the cuts that we have seen in the past three years?

However, there is another, relatively low-cost opportunity to identify the hidden half. About six weeks after giving birth, new mothers see their GP for a six-week baby check, with many practices also offering a maternal health check. Official National Institute for Health and Care Excellence guidance encourages doctors to do that and inquire about a mother’s emotional wellbeing, providing an opportunity for them to spot the development of any mental health problems. That check could be the last time a mother sees a health professional for a routine appointment in which there is the opportunity to focus on the mother, rather than her baby.

While some women get an excellent six-week check, showing its potential, other women miss out. A fifth of women questioned in a recent NCT survey said that they were not asked about their emotional or mental wellbeing at that appointment. Some women’s checks are all about their baby. Why do all women not get the check that they need? Despite the six-week baby check being part of the GP contract, for which they receive funding, doctors do not receive any funding for the check on the mum. It is a credit to many practices that they offer the checks without funding, but making the time for a full appointment can be challenging, meaning that there is little opportunity to encourage a mother to talk about how she feels, which takes time. A rushed appointment can make many, like the constituent of the hon. Member for Thirsk and Malton, feeling dismissed, or like it was a tick-box exercise.

One woman I heard from recently said her appointment made her

“feel like she was a burden”.

Another of my constituents spoke movingly of her experience:

“I knew there was something very wrong almost as soon as my son was born. Nothing I was ‘supposed’ to be feeling was happening. All I wanted to do was cry. I was feeding him and taking good care of him, but I felt empty inside, and so sad. I can’t remember anyone asking me how I was. I only saw my health visitor once, and that wasn’t in private so there was no opportunity to confide in her.

I told my GP I had postnatal depression and that I needed some help. He told me ‘you have a good family, you should be grateful—you need to pull yourself together.’ I don’t think I have the words to explain how damaging that was. I felt too ashamed to see him again so I changed to another medical centre. My first appointment was with a GP who listened to me. I found the courage to confide in her and she offered me support straight away. I remember very little of my child’s first year of life and I’m sure that is because of the trauma and deep depression I experienced.”

That could have been prevented if my constituent had been seen early on in the post-natal period, and if that first GP had delivered open, supportive questioning that reassured her, rather than made her feel ashamed.

Another constituent told me:

“I sat down with my GP, who had a check-list printed out and placed on his desk. He ran through the questions at a rapid rate, didn’t listen to my answers at all and placed ticks in the boxes after he asked the questions—not based on my reply. Hopefully a separate check for mothers can be achieved, as mothers just want someone to talk to who will not judge them for their feelings.”

About 30% of women diagnosed with post-natal depression still have depression beyond the first year of childbirth. If problems are not identified and treated early, they can worsen and develop into a much more severe mental illness. That underlines the need for an early check. If depression was recognised and treated appropriately within the perinatal period, it could prevent some effects that are much harder to treat in the long run.

[Lyn Brown]

I am sorry to intervene again. I intended to make a speech, but I am needed elsewhere, so I will ask a question. I have a lot of time for the Minister and I am wondering how we can help her to make the necessary case to the Treasury. Is it not true that if we look after the parent and the child as early and as well as possible, that will save massive amounts of money in the long term? This is an invest-to-save opportunity, and it would be welcome if the Government took it.

[Dr Williams]

I thank my hon. Friend for her intervention. I have avoided, as much as I can, talking about money in the debate—not all of this is about money, but there are many opportunities to make a massive difference. If we can draw a direct link between a mum’s experiencing mental health problems and the damage that that may do to her child—it increases the child’s chance of developing health problems and even of being involved in crime later in life—there are certainly opportunities to invest to save.

We must not forget, either, that perinatal mental illness has serious consequences for the mother. Suicide is the leading cause of direct maternal deaths occurring within a year after the end of pregnancy in the UK. It is at least possible that if an effective six-week check were in place, some of those deaths would be prevented. Of course, this is, as many hon. Members have said, a complex issue. Diagnosis and treatment are complex, but in addition some health services undoubtedly do not give women the care that they need. Women feel that they are still being dismissed, stigmatised and ignored. However, we should not blame the individual GPs and health professionals who carry out the checks; we should look to change the guidance, the system and the structure in place.

From its research, the NCT has made three recommendations. The first is to fund the six-week maternal post-natal check so that GP surgeries have the time and resources to give every new mother a full appointment for the maternal check. At the moment, although the check focusing on the baby is contracted for and there is funding available for it, there is no requirement for a six-week check on mothers. Checks on mothers, if they are done, are often compressed into the baby’s check, so conversations about mental health may be rushed or sidelined completely.

A constituent got in touch after I said that I was going to speak in this debate. Her response was surprising. She said:

“After the birth of my first child, I suffered terribly with post-natal anxiety—something I didn’t even know was a thing. I don’t remember anyone ever picking up on how I was feeling and no one ever really asked.

Then after the birth of my second child I believe I was depressed. When he was born I didn’t feel anything which then made me feel guilty”—

a common theme—

“and I struggled to bond with him over the first year.”

She then said:

“I believe I met you”—

meaning me, because I was working as a GP in the constituency at the time—

“at my six-week check with him and I remember you asking how I was feeling. After telling you I think I may have needed to”

get some extra help

“for more therapy, you agreed it was a good idea and told me to come back”

for follow-up. She continued:

“I think women need to know where they can go for help and what signs to look out for. I was too scared to tell anyone that I didn’t feel any bond with my son because I think there’s still such a stigma around mental ill health.

I do think the idea of a separate appointment for the mother would be a good idea and more signposting to support groups, how to self-refer, confidential information and advice.”

That experience with my patient, who is now my constituent, demonstrates the value of making time to identify and explore perinatal mental health issues. It might be argued that GPs should be doing that anyway, even if it is not contracted for. I would respond by saying that some are and some are not. GPs do many things that are not in their contract. But the only way of getting true national coverage and the time needed to do a proper job is to resource it.

Oral Answers to Questions

Lyn Brown Excerpts

Tuesday 20th December 2016 Commons Chamber

[Mr Dunne]

I am grateful to the hon. Lady for raising some of the issues at the Pennine trust. We are well aware that it needs improvement, which is why we have buddied it up with the outstanding Salford Royal NHS Foundation Trust next door. The Salford trust is led by Sir David Dalton and the Secretary of State referred to it earlier. I will take up the matter raised by the hon. Lady directly with Sir David.

[Lyn Brown (West Ham) (Lab)]

7. What steps his Department is taking to work with community pharmacies to reduce (a) waste and (b) the cost of medicines.

[The Parliamentary Under-Secretary of State for Health (David Mowat)]

NHS England has a range of initiatives for waste and medicine cost reduction. We estimate that there is a prize of up £150 million a year to be realised across the system on waste. Community pharmacies have a significant role to play in that, partly through their existing duty to review prescriptions when repeat dispensing and partly through the separately commissioned medicine use reviews.

[Lyn Brown]

The Minister is absolutely right to say that community pharmacies have an important role to play. On 17 October, he told the House:

“We do not believe that any community pharmacies will necessarily close as a result of these cuts.”—[Official Report, 17 October 2016; Vol. 615, c. 597.]

However, the impact assessment published by his Department just two days later described a possible scenario in which 1,000 pharmacies close. Will the Minister confirm that nobody in Britain will have to travel further to get to a chemist as a result of his cuts?

[David Mowat]

The impact assessment set out an upper range, which we do not believe represents an accurate reflection of what will happen. The facts of the matter are that we need our community pharmacy network to move towards services and away from dispensing. Paying every community pharmacy in the country, or 91% of them, £25,000 just for having an establishment does not achieve—[Interruption.]