Autism

Bob Stewart Excerpts

Thursday 29th March 2018 Commons Chamber

[Bob Stewart (Beckenham) (Con)]

As everyone here today knows, autism takes many forms and it is sometimes not physically obvious. That is probably why some people are not diagnosed when they are children. However, most are, so I want to talk about one of them.

In the early 1970s, my parents ran a home for children with special needs at Chinley in the Peak district. My superb younger sister Alison Stewart, now Mrs Alison Collier, had just finished school and was living with my mother and father before starting further education. I remember that one of the young boys in the care of my parents was called Frankie. He was autistic. Of course, Alison also helped to look after the children when she could.

Frankie seemed to adore and trust my sister, and Alison, for her part, liked and helped the boy a lot. The problem came when my sister went off to college in Leeds. Alison knew that it would be very upsetting for Frankie, so to help to calm him my mother took him along when she drove Alison to start her university course. Together the three of them went to Alison’s allocated room in the college. They started unpacking her luggage. As they did so, Frankie kept returning Alison’s belongings to her suitcases. He was clearly not accepting the situation and simply did not want things to change. I gather that that is typical behaviour for some people with autism and, of course, Alison had to stay in Leeds.

When my mother returned to Chinley, it was clear that Frankie was very upset. Apparently, he sat in Alison’s room, rocking backwards and forwards in agitation. He was clearly very sad. For her part, Alison knew very well how upset Frankie would be by her departure. She telephoned home and spoke to my parents. Then one of my parents handed the receiver to Frankie, and, for the first time ever, he used the phone. He was desperate to communicate with Alison, and, by a supreme effort, he spoke to her. It was an achievement that my parents always remembered with pride until they died.

For Alison, her experience of caring for and helping Frankie was crucial in deciding her future career. After university, she trained to teach people with additional needs, and until this day she still does just that.

I gather that autistic people do not normally have learning difficulties. Indeed, they are often very intelligent. They can also have skills that are unique. That is certainly the case with the artist Stephen Wiltshire, who suffers from autism. His particular talent is drawing lifelike, accurate representations of cities, sometimes having only seen them briefly. They are amazing pictures, and I suspect that most honourable colleagues have seen them. Stephen studied fine art at the City & Guilds college and was awarded the MBE for services to the art world in 2006. His work is popular all over the world, and he clearly is, or should be, a poster boy for autism.

Autism impacts on people in many ways, yet it has nothing to do with ability to learn and it is certainly not visible. As we have heard today, it is an all-life disorder and there is no cure for it. If there is a common condition among the varieties of autism, it is probably that people have difficulty with social interaction. Often, they do not like change in their lives or routine, like Frankie when my sister Alison left home to go to university. They also feel, and sometimes look, isolated and withdrawn.

As my good friend, my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan)—who is in the Chamber rather than drinking piña coladas in Amersham, as was suggested earlier—has said, autism hits about one in a hundred people, so it is pretty common. Thank goodness that it is also a condition that is increasingly being understood, and I hope very much that a debate such as ours today will increase people’s understanding and support for those with autism even more. I will finish there, Madam Deputy Speaker, so that others can speak for longer.

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[Paula Sherriff]

I think all Members would concur that waiting nine years is absolutely unacceptable. To be fair, that is at one end of the waiting-time limit, but it is clear that there are many delays in many areas, often running to years. One local authority has recently admitted that it has delays of 125 weeks. Collectively, Members from all parties need to work together to try to bring down delays of that length, because they mean that support and intervention may be less effective when it arrives, and lead to parents losing confidence in the system. As with many other conditions, illnesses or whatever we call them—it is difficult to find a suitable noun that actually describes autism—early intervention is absolutely the key.

There is clear evidence that a positive experience in the diagnostic process is associated with lower levels of stress and more effective coping strategies for families. We have heard in previous debates about the lack of data on waiting times. This April is meant to see the start of new standards on the collation and publication of such data. I hope the Minister will update the House on where we are with that. There is a need for better data on the number of diagnoses and who is being diagnosed with autism, so that we can identify where there are gaps. The National Autistic Society has reported that more than three quarters of people who use its adult services are male, but there is a concern that that may be related to a lack of recognition for women and girls with autism. Similarly, there is a generation of people for whom autism was not a recognised condition when they were younger.

[Bob Stewart]

I rise in support of the hon. Lady’s point. I bet there are a heck of a lot of people who have autism, and no one can really understand that they have it—they probably do not understand it—but a lot of people are like that and they are adults.

[Paula Sherriff]

I thank the hon. Gentleman for his intervention.

NICE recently recommended the creation of an autism register so that areas where autism may be under-diagnosed can be identified. Following that, the Government committed to including autism in the primary care register. Will the Minister update the House on the implementation plans for this scheme?

We must also ensure that post-diagnosis support is in place. We know that parents have raised concerns about being left with no support during and after the diagnostic process, not being signposted to other advice and help, and not even getting a written report of the diagnosis. Too often, there are significant barriers to accessing the right treatment. In a previous debate, we heard the shocking case of a young boy who was having suicidal thoughts, but was rejected four times for treatment because he had not yet made an attempt to take his own life. The Children’s Commissioner for England confirmed concerns about that issue when she stated to the Health Committee that this type of situation was now “the norm” within children’s mental health services. That is worrying for children’s wellbeing generally, but particularly so for those living with autism.

 Orkambi and Cystic Fibrosis

Bob Stewart Excerpts

Monday 19th March 2018 Westminster Hall

[Paul Scully]

The right hon. Gentleman’s contribution comes to the nub of the issue. I will scrap most of my speech, which I had not written anyway, and dash around. There are two issues. We can talk about the Government getting involved in pushing NHS England and Vertex together to make a sensible deal in this case, but I come back to the point that this is an analogue system in a digital age. I will try to do it justice, but it is a case of inequality. About 400 patients have access to Kalydeco, which I mentioned earlier. They have a particular mutation to which Kalydeco responds. Around 3,000 patients would be eligible to access Orkambi. However, the point about cystic fibrosis is that, because it is a genetic disease, it cannot be caught, so we know pretty well the number of people we will need to treat over the next few years. There are around 10,400 sufferers in this country, which is extraordinary, because there are only 70,000 sufferers around the world.

Cystic fibrosis is a pernicious disease, and I have not even started talking about its effect on the children of the people I have met. However, it is not big enough to require an international epidemic-style solution, and it is not small enough to be a rare disease. It fits somewhere in the middle.

[Bob Stewart (Beckenham) (Con)]

Nobody can catch cystic fibrosis, but as my hon. Friend mentioned, two sufferers in the same room together can really affect one another. The bugs from their lungs can transfer, presumably through the air.

[Paul Scully]

Absolutely. A lot of the people I have met have aspergillus, which is a mould-based infection. It is around in the air in many homes, which for us does not matter, but for sufferers can cause a severe reaction and a severe loss of lung capacity.

--- Later in debate ---

[Bob Stewart (Beckenham) (Con)]

Being born with cystic fibrosis is just the bad luck of the draw. Until I started researching cystic fibrosis to speak today, I had no idea that one in 25 of us carries a faulty gene that causes it. Nor did I realise that people were born with the condition and cannot catch it. The Cystic Fibrosis Trust tells me that about 10,400 people have cystic fibrosis in this country.

It is bad luck if both parents have a gene that might generate cystic fibrosis in their child. Most potential parents carrying a generating cystic fibrosis gene are totally unaware that they could have a baby cursed by the condition. I gather that the chance of having a baby with cystic fibrosis when both parents have the gene is about one in four. That was the case with Trudy and Gary Davey, my constituents, whose son suffers from the condition. Trudy is the daughter of my very close friend, Maggie Hopgood. Maggie’s grandson Zac had the standard blood test just after his birth, and he has been on cystic fibrosis medication ever since—that is for life.

Cystic fibrosis is a rotten condition to have. Most often it attacks our lungs. Sufferers get a mucus build-up in their lungs, and lungs do not work well when they are drowning, but it can be worse than that. Our pancreas is tasked with producing enzymes that break down food in our stomachs, but that organ can also often fill up with mucus, ruining what it is meant to do. Cystic fibrosis does not stop its rampage there. It can also cause diabetes and bone disease. Cystic fibrosis is literally a pain to live with. It is always life-threatening, and it is certainly long-life restricting.

I come to the main point of this debate, which is to get cystic fibrosis sufferers, such as seven-year-old Zac Davey, better access to Orkambi. Orkambi seems to make a huge difference to the lifestyles and lives of sufferers. I gather that it works on about 50% of cystic fibrosis sufferers and slows the decline in their lung function by 42%, which is quite a result.

As we have heard, Orkambi is not normally available on the NHS except in extreme compassionate cases. Of course, the reason for that is expense. Per patient, Orkambi can cost more than £100,000 a year. On the plus side, more widespread use of Orkambi is likely to reduce the requirement for hospital treatment among sufferers—there is a spin-off in reduced NHS costs. The drive must be to reduce the costs of Orkambi. That requires action from Vertex, the US-based company that produces it, and from the Government and the NHS. I gather that negotiations have been ongoing for a while. We are talking about people’s lives and their life expectancy. It must be sorted and it can be. Hopefully this debate, having raised the matter for the third time in Parliament, as we have heard, will add impetus to the resolution of the problem, and Orkambi will be made more readily available to the many who have sore need of it such as my friend’s grandson.

[Sir Roger Gale in the Chair]

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[Patricia Gibson (North Ayrshire and Arran) (SNP)]

The development of the treatment offered by Orkambi has offered renewed hope to those living with cystic fibrosis and their families. Orkambi is suitable to treat around 50% of those with cystic fibrosis in the UK and, as we have heard today, that treatment can now be extended to those from aged six years, as opposed to the original licence, which was to treat those aged 12 and over.

We have heard today at some length about the controversy over the cost of the drug. As a Scottish MP, I was heartened by the Scottish Government Cabinet Secretary for Health and Sport, Shona Robison MSP, who strongly encouraged the manufacturer Vertex to take forward discussions with the patient access scheme assessment group secretariat. Those conversations continue. It is easy, and perhaps obvious, to point out the high cost of the drug—we have heard much about it—but who in this Chamber would not stretch every sinew for their child or loved one to access the drug if they could benefit from it? That is why parents and relatives of those living with cystic fibrosis have been campaigning so hard. What else can they do?

We have heard about the cost of the drug, but as we have also heard, the costs can be offset by reduced hospital admissions. NHS funding will always be under pressure as our technology advances. One consequence is that the cost of treatment is always likely to be driven upwards. Costs are important, and we have to be mindful of them, but I ask hon. Members, “If your child or loved one could benefit from a treatment, however expensive, what would you not do to help them to access it?” That is what drives those campaigning for access to Orkambi.

The campaign has been effective and moving, as we have heard. We must keep listening and empathising with what those people are saying, because we cannot just talk about pounds and pence when it comes to treatment. We are dealing with real lives, which must guide progress. Progress must be made—we all hope that happens sooner rather than later.

[Bob Stewart]

My point is very straightforward. It seems grossly unfair that some people can get hold of this drug and some people cannot. We ought to level the playing field.

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[Bob Stewart]

On my good friend’s excellent point, I wonder how much it costs to put a child in hospital for a month. I am pretty sure it is not far off £100,000.

[Crispin Blunt]

My hon. Friend leads me to my next point. How do we wish to value better and longer life for those with cystic fibrosis? How do we wish to value the savings to the NHS of reducing the 9,500 hospital admissions and the 100,000-plus hospital bed days a year? How do we wish to value the societal and economic benefits of helping young people grow up to play a fuller part in their education and employment, and the benefits to their families and care givers? How do we wish to value and reward the risk and innovation that goes into researching and developing breakthrough medicines?

NICE applies rigid health economics methodologies through its standard technology appraisal, which is designed not for rare diseases and specialised services but for primary care medicines that treat large populations with well-known diseases. Are we content for NICE to apply a threshold for valuing life that has not changed since it was established in 1999, even though healthcare inflation has almost tripled what we spend on healthcare?

My right hon. Friend the Member for Chingford and Woodford Green (Mr Duncan Smith) referred to social impact bonds and payment by results. I do not envy those who have to make those evaluations, such as the Minister and NICE. The costs fall on NICE and the health service budget, and the benefits are often felt elsewhere, not least in patients’ quality of life. Our society and the Government have to become more sophisticated about early investment. We must be able to measure the savings that come from having fewer hospital admissions and from the greater contribution to society that people who suffer cystic fibrosis will make if we improve their quality of life and reduce the degradation of their lungs.

Does the Minister accept that, although NICE has a specific evaluation process for highly specialised technologies for ultra-rare diseases, it is missing a framework for other rare diseases and precision medicines that treat sub-groups of rare diseases? He will no doubt point to initiatives such as the accelerated access review and the sector deal for the life sciences industry. I welcome those schemes in so far as they aim to address some of the access challenges, but they count for little if there is not a willingness to find innovative and flexible approaches to introducing innovation in the NHS. If we get this right, the UK has huge opportunities better to serve NHS patients and attract industry investment in clinical trials.

Vertex, the manufacturer of Orkambi, recently proposed a portfolio arrangement to NHS England, as we have heard from many colleagues, whereby all its current and future cystic fibrosis medicines could be made available to eligible patients at a fixed cost to the NHS, irrespective of the number of patients treated. Vertex wants to work with NHS England and NICE to put a long-term arrangement in place, as it has already done in Ireland. As the company introduces new medicines and line extensions, patients will get rapid access to the most suitable products for them upon regulatory approval, and the NHS will have budget certainty. Vertex expects to develop therapies that will treat 90% of cystic fibrosis patients within seven years.

In the light of the company’s proposal and the strength of feeling expressed in the petition and by colleagues in this debate, will the Minister look at mandating NHS England and NICE to prioritise discussions with Vertex to find an innovative and sustainable funding solution? It gives me hope that the offer that Vertex found unacceptable last Friday included a possible portfolio approach. It failed simply because NICE was not prepared to increase the resources it already pays for existing drugs, not including Orkambi. That plainly meant that the offer could only be unacceptable to Vertex, given that it is proposing new treatments that are going to treat 10 times as many patients as are being treated by the drugs currently available.

This is urgent. As my constituent, Sharon Cranfield, said to me:

“Each day of delay is additional delay of ‘irreversible lung damage’”

for those with treatable cystic fibrosis.

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[David Linden]

Absolutely; I know that my hon. Friend is a passionate champion of her constituents in Glasgow Central and she is right to put that on the record.

Numerous other constituents have come to me, including Lee Bennie from Garrowhill. Again, she made the case that we need Orkambi now. Over the course of the weekend, I had the privilege of spending some time talking to a friend’s brother, Ross Moore. He is not a constituent of mine, but he has access to Orkambi through the compassionate access scheme. Ross is a remarkable young man who is incredibly articulate. I was quite struck by how frank he is; he has lived with cystic fibrosis for so long and I was very moved by the way in which he could explain why he has access to Orkambi and why he thinks that other people should have access to it.

Ross was moved on to Orkambi only in October last year because his lung function had dropped below 45%. He was quite honest in saying that the first six to 10 weeks were very tough; for some people that can be make or break, but he has got through that. My hon. Friend the Member for Glasgow Central (Alison Thewliss) has mentioned people’s ability to try to put that effort into physio, and Ross said that it is a very arduous process. He does physio for two to three hours a day. When speaking to him, I was struck that he already has access to Orkambi, and he does not want to pull up the ladder behind him. He said to me before I came into this Chamber, “Go in there and explain the benefit of Orkambi; we need to make sure that people understand that for those who do not have access to it already we have got to have that access, because it is only through that research and that ability to use it that they will have it.”

[Bob Stewart]

Does that mean that the hon. Gentleman’s constituent will have Orkambi for life, or will it be taken off him later?

[David Linden]

While I was having that conversation with Ross, that was at the back of my mind. I am very glad that he answered before I managed to ask it, because it is very difficult to ask somebody, “Will you have access to this for the rest of your life?” Thankfully, in Ross’s case, he will.

My hon. Friend the Member for North Ayrshire and Arran (Patricia Gibson) outlined very eloquently the situation in Scotland; for the purposes of time I do not want do that. I had a phone call when I left Glasgow airport this afternoon from my constituent, Helen Seery, who lives in Carmyle. Her son, Layton, was born just 22 months ago and has cystic fibrosis. The 20-week scan showed that he would have cystic fibrosis; he was born prematurely at just 28 weeks. His lungs are naturally weaker as a result of being a premature baby. My constituent Helen made the point about what a difference it makes in Ireland, where people have access to Orkambi at five and six years old. I will visit Layton in Carmyle next week. I am aware that it is a challenge for Helen to bring somebody into the house due to the risk to Layton.

It is important that we stand up and make speeches and that we will send the Hansard to the constituent afterwards, but the most important thing for me is going back to Helen and telling her and Layton that I stood up and said that I think that Orkambi should be available in Carmyle, as well as Carlisle. That is the message that we have to leave with the Minister. Constituents are absolutely clear that we need Orkambi now.

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[Marion Fellows]

I agree with the hon. Gentleman. We are talking about people whose lives are shortened and people whose lives are deeply affected. These people could be of such benefit to society as a whole. It is difficult for me to think beyond my granddaughter, and it is also difficult to listen to stories of what might happen. I know she is lucky, but I also know and am passionately concerned about other children who are even more affected by CF than she is. We owe it to them and to people who will inherit CF in future.

I have to be a carrier of the CF gene, and my husband must also be a carrier. We were so lucky that none of our children were affected. It is a terrible, silent disease. The fact that CF sufferers cannot even get together for comfort and mutual support—it all has to be done through parents’ groups—is even more heartbreaking.

[Bob Stewart]

I am deeply affected by listening to the story of the hon. Lady’s granddaughter. When did the hon. Lady and her husband know that they were carriers? That is pretty important.

[Marion Fellows]

I probably am a carrier—unfortunately, for another reason, we have not been tested yet. That is another issue that we will deal with. It would help future research. Actually, after my daughter was tested, she said to me, “Mum, you and dad must go out and buy a lottery ticket—you must be the luckiest people around,” because I have three children and none of us has CF.

The Scottish Government are encouraging patient representatives to participate in Scottish Medicine Consortium meetings. That must be a good driver to let clinicians and other medical people see with their own eyes the difficulties undergone by people who cannot access these drugs.

Sir Roger, you have been most considerate, and I will now sum up. There is an overarching need for a change in the way in which new drugs are approved for use. Cost-benefit analysis needs to be used to calculate the true costs. For example, we should look at reductions in hospital care costs and include the benefits to the economy from the use of these drugs—especially Orkambi, which is our exemplar for now. Of course, CF suffers must be able to play a full part in society and, as we have heard, they could do so if they could access drugs.

Orkambi could be just the start of a whole line of drugs that will benefit CF suffers. No one can cure the disease at the moment, but such drugs will lead to so many more better and productive lives. Yes, there are issues around pricing new drugs. Pharmaceutical companies are not there for charitable purposes, and we all know and understand how expensive it is to create new drugs, but there must be a better way of pricing the cost of new drugs at their introduction across years of their use rather than huge up-front costs.

I was asked by the Scotland parents support group to demand that the Minister takes responsibility for the negotiations with Vertex, and that he brings NHS England and Vertex Pharmaceuticals to the table. Deals and negotiations should never be conducted by email. I am happy to do so, and I wait with interest for his response.

Accutane

Bob Stewart Excerpts

Wednesday 7th March 2018 Westminster Hall

[Bob Stewart (Beckenham) (Con)]

I beg to move,

That this House has considered the risks of the use of Accutane.

It is a pleasure to serve under your chairmanship, Sir Roger.

I particularly wish to speak about the impact of Accutane, which can cause depression and impotence when used to treat severe acne. Accutane is but one of a series of drugs, each based on isotretinoin. There are several versions of isotretinoin, known variously as Accutane, Roaccutane, Claravis, Sotret and Amnesteem. These versions of isotretinoin all perform in much the same way. Since all five drugs stem from isotretinoin, and indeed the Medicines and Healthcare Products Regulatory Agency—MHRA—uses that name, I will use it to cover all five of them collectively.

Originally, isotretinoin was marketed as a chemotherapy drug. Based on the evidence of friends who have undergone chemotherapy, I am immediately warned to watch out for side effects. I do not suffer any more from teenage acne or have the urgent need to get it under control that could easily make me overcome misgivings in a bid to get rid of such a curse.

The effects of isotretinoin were last debated on 3 December 2013 in this very place. I took part in that debate because I was concerned to hear about the effects of isotretinoin on the nephew of one of my then constituents. Worries about the effects of isotretinoin had been debated in Parliament some 10 years before that. This seems to be a problem that will not go away and for which we have no scientifically based answer.

I was spurred to call this debate by a constituent who prefers to remain anonymous, but whose son—a totally happy young man—has had his life totally disrupted since taking isotretinoin for severe acne. Having visited a dermatologist at the age of 16, the boy was given isotretinoin and kept taking the drug for eight months before he stopped using it. But its side effects were enduring. Despite having stopped using the drug, the boy—a first-class student who played a sport at a very high level—suffered total erectile dysfunction that continues to this day. He is now in his early twenties and trying to complete a university degree although, unsurprisingly, his hugely embarrassing situation plays havoc with that.

In 2013, I raised this very point in the debate. We were discussing the possibility of isotretinoin having a continuing impact on a patient once they had stopped using it. I suggested that there must be a link, especially as chemotherapy drugs tend to have some pretty unpleasant side-effects. I quote my words from five years ago:

“If the drug is a toxic chemotherapy agent, it may well have a permanent effect on the brain. Consequently, after the person stops taking the drug, it can affect their personality.”—[Official Report, 3 December 2013; Vol. 571, c. 249WH.]

Perhaps I should have changed the word “may”.

Everyone present will totally understand what a disaster a sexual dysfunction would be for any young person. Isotretinoin, which was meant to cure my constituent’s son of what is normally a teenage affliction, has ruined his life. He has stopped playing sport, become utterly depressed and is a suicide risk. Imagine how difficult it must have been for him to even discuss such a matter with his mother, which he does no longer. His situation also has huge implications on his having children. Who present here today would not feel for him, or indeed his mother, who is probably denied the huge pleasure that grandchildren bring to any family?

It seems reasonable to assume that the perceived shame and dread about prospects for relationships brought about by sexual dysfunctions must be a factor in reported isotretinoin-inspired suicides. That certainly seems to be true in the case of 24-year-old Jesse Jones from Dorset, whose sad loss was mentioned in the 2013 debate. In a final email to his parents before he committed suicide, he wrote:

“Anything to do with the opposite sex isn’t psychologically appealing. I used to have to try and stop myself from thinking about girls all of the time; now, I could hardly care less.”

Loss of libido was one of the many symptoms that Jesse and his parents blamed directly on the drug isotretinoin.

I have not mentioned the effects of isotretinoin on young women. I gather though, also from anecdotal stories, that it has a similar effect to that of men—a loss of libido. Certainly, it is hugely dangerous if a woman becomes pregnant. It has long been known that isotretinoin is likely to cause birth defects in babies in rather the same way as in victims of thalidomide. I gather, therefore, that medical professionals are very careful about prescribing isotretinoin to young women and that they check carefully that they are not pregnant or will not become pregnant. But pregnancy can sometimes come as a bit of a surprise—then what?

In researching for this debate, I have read many sad stories about those who used isotretinoin. The effects on people’s mood and outlook can be very quick—sometimes within a few weeks. Patients can go from being carefree, outgoing and happy individuals to being utterly depressed, isolated and desperate in a very short time. I read of one case of that time being three weeks from the first use of isotretinoin to suicide. Surely, there is something amiss for some—perhaps not all—who take isotretinoin. Isotretinoin may be a curse disguised as a blessing to a minority of people who suffer severely after ingesting the drug. For those with a sexual dysfunction, the scars will be much deeper than any their acne would have ever caused.

I understand that to date, no direct link between isotretinoin and some of these side effects has been scientifically proven, certainly not in this country. But anecdotal evidence and existing studies point to a need for critical, scientific examination of what so many people have experienced. I accept, too, that for many people the side effects of isotretinoin may not have an obvious impact, but I am told that they do have an impact, albeit we may not see it immediately.

The drug may have disastrous effects for only a small percentage of patients who take it, yet I am assured that since the last debate on this subject in 2013, which I took part in, 33 more deaths attributed to isotretinoin in the United Kingdom have been reported to the MHRA. In 2005, the American Food and Drug Administration posted an alert that patients taking isotretinoin should be watched closely for serious symptoms, including depression, suicidal tendencies, sadness, short tempers, anger, loss of social interaction, psychosis, loss of motivation and changes in appetite. I do not think I ever want to take this wretched pill.

The percentage of people who develop obvious side effects from taking isotretinoin may be small, but it is clear that there may well be huge danger for some of them. As it is prescribed under circumstances where severe acne has failed to respond to other treatments, I presume that the balance of professional opinion continues to accept that it can have a place on the shelves of dispensing chemists—but I wonder whether it should, given the amount of anecdotal evidence about its harmful side effects.

I gather that the Department of Health has agreed that, when a patient is prescribed isotretinoin, the accompanying patient information leaflet—the so-called PIL—should specifically warn about the possibility of erectile dysfunction and diminished libido. Those additional cautions appeared on the Government’s website in October 2017, yet, as I understand it, at least some PILs handed out by medical practitioners have not yet been updated. I hear that, as of last Friday, the pharmacist at one of my local hospitals apparently remained innocently unaware of those changes, too. Perhaps many other pharmacists and even dermatologists are in the dark about those new warnings.

I checked whether I could get hold of isotretinoin pills with relative ease and without a prescription. Of course, I used the internet. I discovered that British companies such as Lloyds Pharmacy insist on a prescription, but that is not so for companies based overseas. The very first company that appeared on my screen—even before any British ones—was called Online Pharmacy, which is based in the United States. Somewhat ironically given the reason I was looking at the website, its strapline was “Safe and High Quality Medicines”. The Online Pharmacy website informed me that I could purchase 10 isotretinoin pills for £45.07. For a further £18.10, I could get them delivered to my home in a “discreet package” by express mail direct from the United States. Incidentally, Online Pharmacy also promised to include two free Viagra tablets, which is even more darkly ironic considering the problems I am talking about.

Last weekend, I asked Delphine, our 21-year-old daughter, whether she had ever heard of isotretinoin for solving problems with acne. With her, I called it Roaccutane, which is the name used in the UK. She replied that she had and that some of her friends had used it. Of course, I immediately warned her to tell them about the potential dangers. If a young person suffering badly from acne hears of a “miracle” pill that they can get over the internet, might they not just do so, ignoring or perhaps just in ignorance of the risks? After all, my daughter knew nothing of the associated dangers.

After three debates in Parliament in which Members have expressed concern about this drug’s impact on patients, surely it is time for a well-funded and sizeable Department of Health study into the possible problems of using isotretinoin so that we know the answer. In the meantime, it might not go amiss to ensure that mandatory warnings are given to and by medical practitioners who prescribe isotretinoin.

Organ Donation (Deemed Consent) Bill

Bob Stewart Excerpts

2nd reading: House of Commons
Friday 23rd February 2018 Commons Chamber

[Dr Matthew Offord (Hendon) (Con)]

I congratulate the hon. Member for Coventry North West (Mr Robinson) on promoting the Bill, and I know that it will make progress today. As many people have said, 80% of British society support organ donation, but 20% do not. I want to speak on behalf of that 20% to ensure that they are carried along with the debate, rather than left behind.

A gentleman in my constituency, Vijay Patel, was recently unnecessarily killed, and his family took great comfort from the fact that his organs were used to help other people. For me, that is such a gift, and I commend anyone who donates, and their families, for allowing the donation to take place. Many people prepare themselves to be organ donors after they die, and their families are an integral part of that process. Within that wider framework, the crucial role of the donor’s family must be understood, because their role regarding the ownership of the body after a person dies, and their duties towards it, is a central aspect of the grieving process.

There has recently been a lot of concern about a north London coroner who refused to release bodies, which is causing a great deal of concern to my constituents. It therefore follows logically that the family must be involved in organ donation, and I believe that their consent is paramount at the crucial time. Those families need reassurance along their pathway towards consent.

It has been said that there are religious differences on donation, but that is incorrect. Both Islam and Judaism allow organ transplants from live and deceased patients in order to continue and save lives. One factor that perhaps some are not aware of, and that might influence the decision-making process of some families, is how the point of death is decided. Some people regard death as defined by cardiovascular criteria, which is when the heart ceases to function. Others use cessation of brain function—brain stem death—as their criterion. Those two distinctions sometimes make people uncomfortable with donation.

The National Institute for Health and Care Excellence recognised both definitions of death when it formulated the NICE guidelines that explain how healthcare professionals should support a bereaved family when discussing organ donation. There is one pathway for those who accept only cardiovascular death, and another for those who accept brain stem death. As a result, families are helped to understand how they might be able to combine deceased organ donation in a way that does not interfere with some religious traditions.

Enabling someone accessible to guide a family through the donation process is a humane, sensible and constructive proposal. A properly trained and resourced transplant co-ordinator should be able to do that, as it is the most important way in which families can be supported at a terrible time in their lives. In practice, however, under the system proposed, there would be less institutional incentive for health services to employ such people.

The Government are aware of the issues around transplantation, and they cannot plead ignorance in that our religious communities are being unresponsive to human need. In 2013, leading Muslim and Jewish groups wrote jointly to the Government suggesting a way forward in which an enhanced and improved opt-in system could be introduced that would alleviate their concerns. Improvements would include a Government-backed statement that Jews and Muslims could sign, which would enable them to donate organs in a manner compatible with their beliefs. If that approach were to be adopted, it would enable the two communities to be even more supportive of an opt-in system than they have been in the past. That proposal has been raised on several occasions, but I am afraid it has been ignored. The hon. Member for Coventry North West mentioned former Chief Rabbi Lord Sacks, who he said opposed such measures. As I understand it, however, the current Chief Rabbi, Rabbi Mirvis, is in favour of the proposal I have just outlined.

Life, and indeed death, has changed for many people. More people want, understandably, to spend their final months at home. If they die at home, organ donation is much less likely. Healthcare professionals who need to secure consent for donation must have a conversation with organ donors, and their loved ones, about why they are best placed to give the gift of life if they remain in hospital. That conversation is a natural feature of an opt-in service. Under an opt-out service, there will be little incentive to have that complex discussion with potential donors and their families. The result could be that patients might drift to spend their last months in hospital.

[Bob Stewart (Beckenham) (Con)]

May I ask my hon. Friend, as a doctor, how quickly the medical profession can assess whether someone who has died is the right sort of person for a donation? So few people are the right fit for a donation—1%, as I understand.

[Dr Offord]

I cannot mislead the House, because unfortunately I am not a medical doctor and I am not able to answer that question. I am certainly content to talk about socio-economic deprivation in places such as Cornwall, which was part of my PhD thesis, but I will leave the issue raised by my hon. Friend alone. He mentioned the 1%, but other potential donors and their families could be intimidated by clinical settings, have problems with language skills or be too emotionally distraught actively to engage with a system that lacked incentives to ensure professional support throughout their decision-making process. Such potential donors and families could find their rights eroded in that practice.

My hon. Friend the Member for Shipley (Philip Davies) made a point that I wish to echo. The underlying question raised by some considerations is whether public services should treat patients and their families as citizens whose active consent must be sought as a legal duty, or as subjects whose ability to choose whether to donate or not depends on the goodwill of well-meaning but overstretched professionals. Ultimately, an opt-in system that harnesses the role of both religious and civil society to increase organ donation from deceased donors is, for me, the best way forward to maximise organ donation while defending not only religious freedoms, but the rights of all potential donors and families.

Hospital Car Parking Charges

Bob Stewart Excerpts

Thursday 1st February 2018 Commons Chamber

[Emma Hardy (Kingston upon Hull West and Hessle) (Lab)]

It is a pleasure to follow the hon. Member for Telford (Lucy Allan). We all know that our NHS is underfunded. The hospital trust in my constituency, the Hull and East Yorkshire Hospitals NHS Trust, received more than £1.5 million in car parking charges in 2016-17, according to data released under a freedom of information request, so it might seem unusual for me to be calling for the abolition of car parking charges. We know that they can provide an income for hospitals, but I agree with the hon. Lady: much of the money does not go to the hospital, but often to the private operator of the car park.

It is the Government’s responsibility to ensure that our NHS has the money it needs and not that of patients, staff or visitors. We should not expect vulnerable people to pay a sickness tax through car parking charges. I also agree with my hon. Friend the Member for Great Grimsby (Melanie Onn) about the impact on residents living in the local area. In Walker Street opposite my hospital, resident permits have had to be introduced to try to stop other people parking on those streets. In effect, the residents who live there have to pay to park their cars, because staff cannot afford to use the car park and park their cars on those streets. The whole system is complete nonsense.

I am incredibly proud that our Labour manifesto pledged to scrap car parking charges. Our suggestion was that any loss in income could come from a hike in the tax on private healthcare insurance. That would meet the £162 million cost of free parking at all NHS hospitals across England.

The unfairness of the sickness tax, from having car parking charges, must be felt in context. Let me tell the Chamber about a dear friend of mine—a man called Dermot—who has been in hospital for well over 28 days. I am not sure whether hon. Members are aware of this, but a particularly cruel and unfair consequence of him being in hospital for more than 28 days is the ending of his payments for disability living allowance and attendance allowance. If he had been receiving personal independence payment instead of DLA, that would have been stopped as well. His wife’s income has also been affected because she is his carer; she has stopped receiving her carer’s allowance, because Dermot has lost his DLA.

The nice bit to this story is that friends have rallied round and organised a fundraising concert for Dermot called—I have to make sure I pronounce this carefully—“Folk the 28 Day Rule” to raise money to support him. However, friends should not have to arrange folk night fundraisers to compensate for the welfare system’s failure to support people. The dramatic fall in his family’s income makes the added travel and car parking costs particularly cruel. They are not the only family facing this situation, but their story highlights the unfairness that many families face in having to park every day to visit loved ones at a time when their income may have dramatically fallen.

We all hate to think what would happen if one of our loved ones ended up staying in hospital for a long time. One of the saddest examples of the sickness tax, as mentioned by the right hon. Member for Harlow (Robert Halfon), is the effect on parents of premature and sick babies. We know that if premature and sick babies are to have the best possible outcomes, they need hands-on care every day. The daily costs of travelling to hospital can present a barrier that prevents parents from being with their babies. Parents surveyed by the charity Bliss said that they spent an average of £32 a week on car parking charges when visiting their babies. That is an unacceptable cost. All new, precious babies have the right to be with their parents—and not just the parents who can afford to pay to park their cars.

[Bob Stewart (Beckenham) (Con)]

I think that this is grossly unacceptable, in the case of people visiting sick babies and, indeed, in the case of men who are waiting for their wives or partners to give birth. How often do people who have paid for three hours find that they require much longer? Then they are stuck. The man is required to stay with the lady—the woman—who is giving birth, but he is worried about paying the flipping parking charge. That is wrong. There must be a way around this one.

[Emma Hardy]

I completely agree. I have accompanied my parents to hospital appointments. My mum sits there and sets the alarm on her phone, and then starts panicking: “We have to go back to the car park. Have we enough change?” That is not what people want to be thinking about when they are visiting a hospital.

The unfair cost is felt not just by visitors and patients, but by staff. It was during my local “big conversation” event that I became aware of the difficulties experienced by nurses and other NHS professionals in my local hospital. The financial squeeze faced by NHS professionals has been well documented. For example, midwives have lost an average of £6,000 a year in real terms since 2010, and the additional cost to them of parking their cars seems particularly unfair. An investigation by Unison found that some nurses were having to rush out between appointments to move their cars and avoid fines. That is a ridiculous situation.

Our hospitals are open 24 hours a day, 365 days a year, and staff finish their working shifts at different times. We have a duty to keep them safe. When they have just spent a shift caring for us, they should not have to return to cars that are parked in dark and isolated streets because they cannot afford to pay to use the hospital car park.

I urge the Minister to adopt this motion and to take action. As has been clear today, it has cross-party support, and it would make a real, positive difference to so many people’s lives.

--- Later in debate ---

[Thelma Walker (Colne Valley) (Lab)]

I thank the right hon. Member for Harlow (Robert Halfon) for securing this important debate on one of the many issues facing carers, families and staff who visit our hospitals.

If I parked at the hospital car park in my constituency of Colne Valley, it would cost me a third more than if I parked in a council-owned car park. How is that acceptable? Is this not NHS trusts profiteering from the sick and vulnerable? When people are in a rush taking a sick friend or relative to the hospital, they will not necessarily consider where is cheaper to park; they will park in the closest car park and then sort it out later. Even people who have to attend hospital regularly will not get free parking. At the Huddersfield Royal Infirmary, a two-and-a-half-hour stay, three times a week, 52 weeks a year will cost £780. That is £780 to support someone who is receiving medical treatment. Even some who are disabled blue badge holders have to pay this.

[Bob Stewart]

I think I speak on behalf of all of us when I say that I find it iniquitous that anyone with a blue badge should have to pay a penny when they go to a hospital.

[Thelma Walker]

I completely agree with the hon. Gentleman.

How are my constituents meant to afford these excessive costs? Hard-working nurses, doctors, porters, cleaners and receptionists go to work to help people. Those hard-working staff are paying £1,680 a year to support families whose loved ones are dying. They are paying £1,680 a year to work a 12-hour shift caring for people. They are paying £1,680 a year to save lives. How is that acceptable by anyone’s standards? How can anyone think it is right that those hard-working professionals are paying nearly £2,000 a year to help and care for people? I can tell the House that it is not.

I appreciate that trusts, including the Calderdale Huddersfield NHS Foundation Trust, are following national guidelines, but patients and staff feel as though they are treating them as cash cows. In 2016-17, my local trust remained nearly £15 million in deficit. In the CHFT annual reports for 2014-15, the trust recorded £1.4 million income from car parking. In 2016-17, that figure rose to £2.7 million. Yes, the extra money that the trust makes helps to plug the hole left by Government underfunding, but it should not have to. Our NHS should be fully funded; it should not have to depend on car parking fees. I urge the Government to consider the comments being made today by Members across the House, and to act swiftly to resolve this issue.

--- Later in debate ---

[Bob Stewart]

It seems to me that there should be staff car parks. There should be a set-up in which staff have separate parking arrangements so that they do not block public parking spaces. They should also have guaranteed slots, so that they are not late for their shifts.

[Sir Mike Penning]

That happens in some parts of the world. For example, that is what they do at the Luton and Dunstable University Hospital NHS Foundation Trust, which looks after part of my constituency. I went there the other day to visit someone who was in palliative care. I did not know how long I was going to be seeing them, or whether I would see them again. The fantastic news is that they are now at home, being looked after by the hospice movement, of which I have been a member for 40 years. That is what the hospice movement is very much for.

Interestingly, I parked and paid in what I thought was a public car park, but I was in the staff car park. So, when I went to try to get out, the barrier would not go up. I pressed the button to talk to someone, and they said, “You’ve parked illegally.” I said, “How have I parked illegally? I’ve got a ticket.” Fortunately, they had no idea who I was, because they probably would have just lifted the barrier to get the MP out of there as fast as possible, which is normally what happens when we visit our hospitals, isn’t it—everything is brilliant, rosy and shiny and everything is great. I said to the person, “No. If you’re going to fine me, fine me. I’ll see you in court, because I have paid in an NHS public car park that you have designated.” They eventually just said, “Oh, go away.” I have been waiting for the fine to come through—it probably will now—and I will see them in court, but the charging is morally wrong.

The situation is even more difficult for patients. The previous debate was about babies and parenting. Babies come out when they want to, usually, not when we want them to, and not based on how much time is left on a car parking ticket. That is what happens, and yet people are getting fined every day because they have outstayed their time in the car park. How can that be right?

A Member who could not be in the Chamber today because they had to attend another meeting, asked me to mention volunteer drivers. What would we do without them? They are fantastic, but they have to pay to park in some hospital car parks before they take patients home, which they do as volunteers because the patient ambulance service is struggling so much. In some parts of the country—I know that it is happening in my area—people are actually asking for patient transport because the car parking facilities are so bad. They are putting more of a burden on patient transport because they cannot find a parking space and they are petrified of being late for their appointment. If they are late for their appointment owing to patient transport, that is okay, but if they cannot find a parking space, they hear, “Oh, you’re a bad person.” We have heard that people are parking outside hospital car parks. Blue badge holders are being charged to park in a car park when they can park for free on the road, so that is what they do. We know that is happening, and it is really very wrong.

I know that the Minister is a good man, and an honourable man, but when he stands up to reply he will almost certainly say that parking is devolved to NHS trusts, and that it is for them to decide how they run their facilities. But for those of us who are Members of Parliament, NHS trusts are completely unaccountable. We can moan about this, but they will not listen in the slightest. They will be looking at whether they can get away with it and how much they can raise.

This is not just about money; it is about space. We have heard that if car parks do not charge, they will be full of people from the town centre. When the acute facility at the excellent Hemel Hempstead Hospital was closed, it was moved to the middle of Watford town centre, next to a football stadium. Apparently Watford play there, and a lot of my constituents will be very upset when they hear about me being derogatory about Watford, but they have a huge number of fans. I went to Watford General Hospital on a Saturday morning to visit a constituent, a good friend of mine, and I parked and paid. When I came out, there was a group of parking people around who clearly wanted to give me a ticket. I had paid in the football bit that is designated for use by Watford football club when they are playing at home. What has that got to do with going to see and look after someone at an NHS hospital, or go to that hospital?

Unfortunately, the parking attendants did recognise me, and they were very apologetic, but I do not think that is right. What would have happened if they had not known who I was? The ticket was coming. How on earth can we have a full acute hospital in the middle of a town as big as Watford, next to a football stadium, and then call that a modern NHS hospital? The parking facilities there for staff and patients are frankly almost non-existent, not least because tons of it has been carved off for the football club. I want Watford to be very successful, but what I want in our part of the world is a brand-new hospital, with proper parking facilities, on a greenfield site away from the town centre, so that we do not have any concerns about whether people will park there all day in order to go shopping. At the moment, though, I do not have that.

There is the acute hospital in Watford, which struggles—it has just come out of special measures and I wish it well—and Hemel Hempstead Hospital, which is basically a clinic these days. We have out-patients; we have a few intermediate wards. They charge the staff, and patients with out-patient appointments, to park there. The car park is empty. Hardly anybody parks there because there is nothing on the site any more, but the hospital still insists on charging. That pushes the patients outside, so there is restricted parking outside, which is also an issue. It is cheaper to park in the council car park in the town centre and walk 400 yards up the hill than to park in a car park that is empty because there are so few facilities at the hospital.

This problem has to be sorted out from central Government, and the central Government guidelines have to be enforceable. I was a Minister for many years: Departments can issue as many notices as they like, but nothing will happen if they do not come out with the stick. Could the money be raised in other ways? Could there be savings in the NHS? As we have heard, the amount of money being raised, compared with the overall pot, is peanuts. One of the more recent chief executives of my very small acute trust was on a package of over £300,000 a year. If we want to save money instantly, let us take a look at the salaries of the really top people in the NHS and let us look after the people at the bottom—we certainly should not charge them to park when they go to work.

Mental Health Units (Use of Force) Bill

Bob Stewart Excerpts

2nd reading: House of Commons
Friday 3rd November 2017 Commons Chamber

[Rishi Sunak (Richmond (Yorks)) (Con)]

It is a privilege to be called to contribute on this important topic. Many constituents wrote to ask me to participate in this debate, so they will be delighted that I have the opportunity to highlight some of the issues they raised. I commend the hon. Member for Croydon North (Mr Reed), not only for securing this debate and championing the Bill but for the constructive and consensual way he has gone about it.

So much has changed about our understanding of mental health. There was a time when we thought of mental health problems as something that happened to other people, away from ordinary life. Now, how many of us have a friend, a colleague or a family member who we know has suffered from mental ill health? That is because more people rightly no longer feel any shame about a mental health problem. Because society is on a journey of understanding, attitudes are changing and stigmas are breaking down.

We all recognise that good mental health is no less important than good physical health, but there is still so much more for us to do. The Bill is the next step in our national journey towards ending the injustices that those who experience mental health problems still face. It is for that reason that I congratulate the hon. Member for Croydon North, who has spent many years working with the family of the late Seni Lewis as they fought for the truth about what happened to their son. It is crucial that we learn the right lessons from what happened to Seni, which is why I am pleased to be able to discuss the important changes that the Bill will make to transparency in mental health units.

I wish to highlight three issues: first, I shall discuss how young people in particular are affected by mental ill health; secondly, I shall discuss some of the measures that the Government have already put in place to improve diagnosis and treatment; and lastly, I shall touch on just a few of the vital changes that the Bill will introduce.

I shall start with the topic of mental health and young people. I am passionate about helping young people to get the best possible start in life. Children and young adults should face no barrier to making the most of their unique talents and enjoying their lives to the full. Often in this Chamber, we think of the obstacles that young people may face in terms of social mobility, access to a good job or apprenticeship, or getting the right education. We are right, however, to highlight today that mental health merits no less of our attention. If we are to ensure that young people can make the most of the opportunities they have and deserve, mental health provision for them must be as accessible and high quality as possible.

The sad truth is that mental health issues disproportionately affect young people. Many of us in the Chamber are all too familiar with the negativity and hurtful comments that some people choose to spread via social media. I ask hon. Members to put themselves in the shoes of a young impressionable teenager or primary school student. One in 10 young people say they have been a victim of cyber-bullying. It is hard to imagine how difficult it might be for a young person when their smartphone or social media become ways for bullies to reach them.

I commend Google, with which I recently participated in a workshop in my constituency talking to primary school children about internet safety and how young people can protect themselves online from unwanted and hurtful attention. Google, I believe, is rolling out this project across the country, and I would urge hon. Members on both sides of the House to work with it when it comes to their constituencies, visits their schools and talks to young people about the importance of protecting themselves online.

[Bob Stewart (Beckenham) (Con)]

That is fascinating. Will parents be able to put some sort of inhibitor on Facebook, or just the child?

[Rishi Sunak]

My hon. Friend makes an excellent point. The workshops provide packs for teachers to give to children to take to their parents so that parents become much more engaged with their children’s online presence, which is something that I, as a parent of young children, am becoming more aware of, as I am sure many others in the House are. We all must be aware of what our children do online, just as we are careful when they cross the street or go to the park.

--- Later in debate ---

[Bob Stewart]

My hon. Friend has close links with the police and with medical professionals. Do they use the same approach to restraining people? I would have thought that the police might be harder than nurses; do they use the same techniques and just apply different sections of the techniques?

[James Cleverly]

I only really have detailed experience of medical and policing practices from my time on the Metropolitan Policy Authority in London and now, as the representative of Braintree, from the Essex Police and my local mental health trust, so I cannot talk about the universality of the situation. However, without a shadow of a doubt, the message that I am picking up is that there is huge variation across and within constabularies and trusts.

The group of clauses relating to accountability is one of the most significant parts of the Bill, and my hon. Friend the Member for Faversham and Mid Kent (Helen Whately) touched on this. I am one of those gruff and grumpy old Tories—[Interruption.] At this point, Members are supposed to join in a chorus of “You’re not that old.”—[Hon. Members: “You’re not that old!”] I thank hon. Members, although no one cried, “You’re not that grumpy.” Clause 7 is incredibly important. I am a gruff and grumpy old Tory, and my instinct is to take away as much red tape and administrative burden as possible but, as my hon. Friend the Member for Faversham and Mid Kent highlighted, this modest additional administrative burden is welcomed by the profession.

There is an old saying in management consultancy, “If you want to change something, measure it”—[Interruption.] I can see my hon. Friend the Member for Faversham and Mid Kent nodding. It is important to register the use of force whenever it is applied, because that will do two things. It will prompt a small pause for reflection if someone knows that they will have to justify the use of force, and it is inevitably a good thing if they recognise in that moment of pause that the use of force is not appropriate. Perhaps more importantly, if the decision is made that force is the appropriate action, clause 7 will mean that there is a record of all the times that force has been used, including the times when that force does not lead to injury or, in the most tragic cases, death. That will enable us to get an accurate understanding of how many times the use of force unfortunately leads to injury or fatality, which is important because it will remind us of the difficulty faced by many professionals.

Health Service Medical Supplies (Costs) Bill

Bob Stewart Excerpts

Ping Pong: House of Commons
Wednesday 15th March 2017 Commons Chamber

[Mr Dunne]

My hon. Friend is right to point out that NICE is considering today in its board meeting thresholds for the introduction of new medicines. What I would not do, however, is share his concern that it will necessarily lead to delay in their take-up. In essence, it will provide NHS England with greater commercial flexibility to negotiate with drugs companies that propose to introduce a drug that may cost more than £20 million in a full year. It will give NHS England more time to negotiate a lower price with the pharma company. That should not, in and of itself, lead to either delay or less take-up.

I am aware of the concerns, expressed by my hon. Friend, other Members and some charities in a national newspaper today, about the joint NICE and NHS England consultation on the proposed changes to the appraisal and adoption of new technologies. There have been suggestions by Opposition Members that this is rationing of NICE-approved medicines. I assure the House that that is not the case. Patients will continue to have the right to NICE-recommended drugs, as enshrined in the NHS constitution. The proposals are intended to ensure that patients benefit from even faster access to the most cost-effective treatments, while addressing issues of affordability as well as effectiveness.

Let me be very clear: Lords amendment 3 would not impact on the proposals; the NHS will continue to fund a product approved by NICE, in line with NICE recommendations. I also remind Members that NICE and NHS England are making the changes to address concerns about the affordability of high-cost new drugs and other technologies that were raised by the Public Accounts Committee, which is chaired by the hon. Member for Hackney South and Shoreditch (Meg Hillier).

I have read the suggestion by the Opposition that the NICE and NHS England proposals would be contrary to our intent to increase the uptake of new medicines. As I said to my hon. Friend the Member for South West Wiltshire (Dr Murrison), that is false. In reality, last year saw spend on medicines grow more quickly than in any of the past 10 years, as we seek to secure rapid access to new medicines for patients.

Access to medicines is primarily dependent on clinicians’ choices about what is best for their patients. Clinicians need to be aware of new medicines and persuaded that they may be a better option for their individual patients, taking into account other conditions each patient may have and other medicines they are taking. We need to change the culture and behaviour of those clinicians who may be reluctant to use innovative medicines, and legislation is not the right way to effect behaviour change in the NHS.

[Bob Stewart (Beckenham) (Con)]

I want to ask a layman’s question: if NICE approves a drug, is the NHS necessarily required to buy it?

[Mr Dunne]

The short answer is yes, it is. That is set out in the NHS constitution. The measures considered by the NICE board today provide some additional flexibility for NHS England in its handling of negotiations with the drugs companies over the introduction of new technology.

Let me conclude on amendment 3 by saying that the Government strongly believe that it would have a negative impact on the Government’s ability to operate price controls, so I ask Members to disagree with it.

I will deal briefly with the other amendments. Lords amendments 1 and 2 and amendments 4 to 24 were made in the other place. They are all amendments that the Government brought forward, having worked constructively with parliamentarians on improving the Bill.

Amendments 1 and 2 relate to the remuneration for persons providing pharmaceutical services in England and Wales respectively. The amendments provide for new regulation-making powers in respect of special medicinal products. These are unlicensed medicines that can be manufactured or imported to meet a patient’s individual needs when no licensed product is available.

The unique nature of specials—the hon. Member for Central Ayrshire (Dr Whitford) mentioned them during our consideration in this place—and their manufacturing arrangements mean that we need to do more to ensure that the prices paid by the NHS represent value for money for all these products. These amendments would enable England and Wales to develop options that will secure improved value for money—for example, by using a quotes system that has been trialled in Scotland, but there are also other options. We will consult the community pharmacy representative body on how best to take this forward.

Amendments 4 to 7 introduce a consultation requirement on the Government with regards to medical supplies. Again, the hon. Member for Central Ayrshire helpfully pointed out that such a requirement was in place for medicines, but not for medical supplies. I thank her for engaging with me and my officials, which has helped to improve the Bill.

The Government have listened to concerns in the House of Lords and in this House about the Government’s power to control the prices of medical supplies. These amendments would ensure that the first order to control the price of any medical supply would be subject to the affirmative procedure, giving both Houses an opportunity to discuss that order.

Amendments 8 and 9 and 15 to 17 are amendments to the information powers in the Bill. Responding to concerns from industry about the potential burdens of the proposed information power, they introduce an additional hurdle for the Government to obtain information by requiring them to issue an information notice whenever they require companies to provide cost information related to individual products, which can be appealed by the company concerned.

Baby Loss

Bob Stewart Excerpts

Thursday 13th October 2016 Commons Chamber

[Victoria Prentis (Banbury) (Con)]

What an honour it is to follow that speech by the hon. Member for Kingston upon Hull North (Diana Johnson). She and I have worked closely together over the last year on difficulties relating to infant cremations, and I very much listened with interest to what she had to say.

When my son died, I was told by our consultant that, one day, it would be possible to put my grief in a box and open the box only when it suited me. Obviously, at the time, I thought she was completely insane; now I realise it is possible to have an element of control over lifting the lid in public—although it is not one I have exercised particularly well today.

Over the years, I have talked about my experiences to raise money for charities, including mental health charities, and I have learned that nothing opens those wallets quicker than a few tears. I have also trained hundreds of midwives for Action on Pre-eclampsia; midwives are fairly used to emotional mothers, so the lid can be fully lifted with them around.

It is an honour to be vice-chair of the all-party group and to have been there at its conception one very late night in the Tea Room. We have well and truly lifted the lid this week in Parliament, which is an achievement in itself. However, just as importantly, we have succeeded in enlisting Health and MOJ Ministers—certainly to date—to our cause. The emotion of the Secretary of State for Health was obvious to all yesterday, and I was pleased to see him here earlier in the debate. The charitable fundraiser in me did wonder whether, next year, we should ask a well-known tissue manufacturer to sponsor baby loss awareness week in Parliament.

In brief, my story is that, following two miscarriages, I developed severe pre-eclampsia and HELLP—hemolysis, elevated liver enzymes and low platelet count—syndrome during my third pregnancy 16 years ago. My son died soon after he was born, and for some time it was not at all clear whether I would survive. To put that in context, my father was slipped from this place at a time of enormous difficulty for the Government, which shows that my condition was clearly very serious. I went on to have two more children, now aged 15 and 13.

With your permission, Mr Deputy Speaker, I would like to touch first on learning points from my own experience and then on some of the work the all-party group has done this year, and finally to make some general points about maternity care going forward.

The learning points from my own experience are out of date, but, sadly, not all of these things have been put right—in fact, most have not. Obviously, physical care comes first where maternal and baby death is a real possibility. However, someone needs to be tasked with the mental care of the whole family, because the death of a baby, as we have heard, leaves deep scars in so many of his or her relations. Memories, clothes and photos make a real difference later, however much they seem like fripperies at the time. Putting bereaved mothers in with live babies is simply not on, however ill they are. Explaining what is going on all the time is critical, and it may need to be done many times to different family members. Medical conditions have to be understood by those who are suffering.

Midwives, as my hon. Friend the Member for Eddisbury (Antoinette Sandbach) said, need considerably more than one hour of bereavement training. They also need training on how to have grown-up conversations on things such as lactation—conversations which were utterly lacking, in my experience. In fact, training all obstetric staff is important, as so many parents go on to have more children. GPs, who are often the first port of call, and other health workers, also need to be aware of the very long-term effects of baby loss.

It is difficult to go back to hospital with whatever condition in the future, let alone one to do with pregnancy. Where possible, parents should not have to tell and re-tell their story at every appointment. HELLP syndrome, which I suffered from, leads to multiple organ failure. I am not a doctor, and I do not really understand what is wrong with me, but if I go to the doctor with a minor condition, I have to go through the whole blinking story again. It would be easy to have a simple flag on my notes so that every time I have my blood pressure taken, for whatever reason, I do not have to re-tell everything.

Fathers, as my hon. Friend the Member for Colchester (Will Quince) mentioned, get ignored. We need proper evidence of the effects on relationships of babies dying. We have some evidence, which he touched on, but it is not broad enough or good enough. Let me read from an article about stillbirth in The Lancet this January:

“Fathers reported feeling unacknowledged as a legitimately grieving parent. The burden of these men keeping feelings to themselves increased the risk of chronic grief. Differences in the grieving process between parents can lead to incongruent grief, which was reported to cause serious relationship issues”.

The effects on grandparents should also be considered. My parents had to cope with the loss of their grandchild and the near loss of their daughter.

Access to mental health provision must be standardised, and good practice copied. According to Bliss, 40% of parents of premature babies need some mental health intervention. I would suggest that every one of those whose babies die needs at least an assessment. Relationship counselling should also be offered as part of an automatic deal, although I do not know at what stage that would be beneficial. At the very least, we need evidence on the effects of baby loss on relationships.

The all-party group is made up of individuals with different experiences and talents. My hon. Friend the Member for Colchester is excellent on parental leave. My hon. Friend the Member for Eddisbury knows more than all others about pathways of care. My role this year has, sadly, been dealing with the issue of infant cremations, not least because of a constituency case I had. I am aware that the Minister is not the Minister who should respond on infant cremation, but it is important that we have a cross-departmental and joined-up approach to the issue, and I would welcome it if he could intervene or at least speak to the MOJ about it.

[Bob Stewart (Beckenham) (Con)]

I have been horrified in listening to this debate. I have never lost a baby in my family, but I am horrified and upset. Surely for a mother who gives birth to a child, stillborn or not, that is her baby or the family’s baby, and surely she and the father should have absolute rights about what happens with the cremation and thereafter. I am absolutely horrified that they do not do so at the moment.

[Victoria Prentis]

I thank my hon. Friend for his helpful intervention.

We in the all-party group welcome the MOJ’s consultation and the subsequent response, which was published just before the summer. It seems that we are—I really hope we are—on the cusp of making some very important changes in this area. I ask that we push for these changes to happen speedily, because they are really important.

Southern Health NHS Foundation Trust

Bob Stewart Excerpts

Tuesday 3rd May 2016 Commons Chamber

[Alistair Burt]

Absolutely. If we now have a system where there is, quite rightly, a degree of autonomy, and Ministers’ responsibility is to make sure that the process and the system work well, Ministers cannot make all the decisions personally, but we do have to make sure that decisions that need to be taken are taken and, if not, that there is a good explanation of why not.

The CQC’s powers have been strengthened. Just a few months ago, we had the first case of a care home owner being jailed because of the care given to people in their home. While I recognise that the work done in caring for vulnerable people is complex and difficult, and that prosecution will not be the right answer in every case, knowing that powers are there is really important. The hon. Lady’s anger is appropriate, and I know the CQC takes these powers very seriously.

[Bob Stewart (Beckenham) (Con)]

Does the NHS improvement director now have the power to go into any Southern Health NHS Foundation Trust facility to assess and neutralise threats we have learned about that have resulted in people dying?

[Alistair Burt]

I hope my hon. Friend will forgive me, but I will not say things from the Dispatch Box that I do not know, and I do not know the precise powers of the improvement director, although I know the CQC has exactly the powers my hon. Friend suggests. However, the purpose of appointing the improvement director, and indeed of NHS Improvement’s appointment of the new chair, Tim Smart—the former chief executive of King’s College Hospital NHS Foundation Trust—is to put in place people who know what they are doing, know what they are looking for and can authorise others to make sure that nothing is being covered up and that everything is transparent.

Contaminated Blood

Bob Stewart Excerpts

Tuesday 12th April 2016 Commons Chamber

[Kevin Foster (Torbay) (Con)]

It is a pleasure to follow the Father of the House, the right hon. Member for Manchester, Gorton (Sir Gerald Kaufman), and to be able to follow on from all the work done to bring this debate to the Floor of the House. I congratulate the hon. Member for Kingston upon Hull North (Diana Johnson) on securing it; it was a pleasure for me, as a member of the Backbench Business Committee, to support the proposal that this debate be held today.

Contaminated blood and the impact on victims was one of the first issues to come into my inbox after I was elected. Someone came to my surgery who had had a condition but had been otherwise healthy, only to find that they were to have decades of pain and disability because of the treatment they had for that condition—that is almost heartbreaking. Virtually all their life prospects have disappeared because of a treatment they received that they thought would make them better.

It is worth examining the scale of this disaster in our NHS system. We are talking about 4,700 people with bleeding disorders and 28,000 other people becoming infected with hepatitis C; and 1,200 with bleeding disorders and 100 other individuals getting HIV. Of course these people were getting that condition at a time when the medical understanding of it was very limited and the life expectancy was incredibly short. Thankfully, many people have benefited from the advances in medical science since 1985, which have allowed them to keep living, but they still face all the issues that come with that illness and—let us be candid—the stigma that still comes with it from those ignorant about what can cause it.

The issue is about looking at the time that has elapsed. I am sure that, like me, my predecessor, Adrian Sanders, who pursued a number of cases diligently during his time as the MP for Torbay, would not have expected that after 18 years his successor would still be talking about this issue and still be having to speak up for the constituents affected by this scandal, at least one of whom is in the Gallery today. We know that a patchwork of five schemes is in place, and reference has been made to that. To be fair, £390 million has already been paid out, but the impact on these people has been so devastating that it is right that we are looking again at what the appropriate level of compensation is.

It was appropriate that last year the Prime Minister issued an apology. That is something so simple, but it took until 2015 for it to happen. I agree that we are not in a court of law today, but it is right that we seek to provide some form of justice to those who for so long have found themselves on the receiving end of life-changing conditions.

[Bob Stewart (Beckenham) (Con)]

We have used the word “justice” all the way through this debate. I have listened to it all and I was not intending to intervene, but I must say that in fact there is no justice we can give people who have contaminated blood—that has been taken away from them. All we can do is give them the best possible help, financially and in care terms. They will never get justice, and it is improper to suggest they can—we cannot do it, it is too late, they have had that taken away and money will not compensate.

[Kevin Foster]

I thank my hon. and gallant Friend for such a thoughtful intervention. We cannot give them justice; we cannot restore them back to where they were before the impact of this scandal, but we can compensate them. We can try to mitigate the impact and give them a life that is appropriate, as best we can. Today’s debate is right to focus on that.