Dementia Research in the UK

Baroness Brown of Silvertown Excerpts

Thursday 10th February 2022 Commons Chamber

[Margaret Ferrier]

I thank the right hon. and gallant Member for that intervention and the hon. Member for Ochil and South Perthshire (John Nicolson) for his story about his lovely mother—a really sparkling lady, who I remember seeing pictures of. It is very sad when people give up the will to live.

One in five hospital admissions are for potentially preventable reasons, such as a fall, infection or psychiatric difficulties. It is not all bleak though. There have been developments and we understand the disease better now than we did just a few years ago. New research from University College London and the University of Paris, published in The BMJ in December, found that those with two or more chronic health problems in middle age are more than twice as likely to develop dementia. That research was based on a long-term clinical trial showing how progress can be made if the resources are available.

I would like to mention the Glasgow Brain Injury Research Group based in the Queen Elizabeth University Hospital. The group looks at traumatic brain injuries, or TBIs, and the impact that they have on patients exposed to varying levels of severity of injury. It is pursuing an interesting workstream on the link between repetitive mild TBIs, incurred through sport such as football and rugby, and the increased risk of dementia. We all know of many famous footballers who have died from dementia, such as the great Billy McNeill. This is a fantastic piece of work and one of the many different research areas that could really deepen our understanding of how dementia occurs and develops and of subsequent treatment methods.

The medical community remains hugely optimistic. A survey of researchers at the UK Dementia Research Institute found that 90% of them felt that new treatments would be found within the next decade, and 72% held the opinion that the pace at which breakthroughs are being made is increasing. Vitally, though, 100% pressed the need for additional funding to allow breakthroughs to be made. They are the experts and we should listen.

Developments are already under way, but the key now is maintaining and accelerating the existing momentum. We have heard of the Join dementia research resource, which is piloting actively writing to all people with dementia after their diagnosis to invite them to participate in research. That would hugely benefit dementia research. In March 2021, Public Health Scotland revealed that less than half the people estimated to have had a new dementia diagnosis in 2018-19 were referred to vital post-diagnostic support. That outreach is essential. How will the Government support the JDR pilot and its roll-out across the four nations?

The lack of timely and accurate diagnosis is making it hard for current clinical trials to identify suitable candidates. The condition is severely underdiagnosed and the current backlog has only slowed things down even further. Transforming the current diagnostic process is pivotal. If diagnosis comes too late, we risk patients not being able to access treatments that might have helped to slow down its development.

The Government talk a lot about levelling up the UK, and I wonder whether that same attention could be given here. As part of the dementia strategy, the Government should invest in the development of multiple dementia clinical trial sites to form a network across the UK. Such a project would be in keeping with a true levelling-up agenda and make the UK an attractive centre for international life science investment. Better understanding of the disease leads to better support medically and emotionally. It will lessen the burdens on our frontline services. Early detection of the disease is crucial to allow patients to continue living independently and with dignity. That is one step that can be taken now. We need a stronger understanding among the general public about what to look out for and how to get help.

I wish to highlight the essential support provided by a number of charities for those with dementia and their support networks. They have also provided a wealth of knowledge to Members to support this debate, for which I am very grateful. Age Scotland, whose remit reaches much further, provides excellent support for older people in Scotland, as do Alzheimer’s Research UK, the Alzheimer’s Society, and Alzheimer Scotland, among many others. Charitable funding has become harder to come by over the past two years, and the work of those organisations in the face of that is invaluable and impressive. Their working commitment is commendable. The UK is a leader in biomedical research. That is something to be proud of, and something we must harness. I look forward to the Minister setting out today how plans for dementia research will be included in a national dementia strategy.

[Ms Lyn Brown (West Ham) (Lab)]

One of my constituents, in asking me to attend today’s debate and talk about dementia, mentioned that they did not feel that dementia is a sexy enough subject to get the funding for research. It is almost as if it is expected that most of us, at the end of our lives, will not be as sharp tacks in the box as we once were, and may therefore find it hard to attract the funding. Does the hon. Lady agree with my constituent?

[Margaret Ferrier]

I do not agree that people with dementia have nothing else to give to society. As the hon. Member for Bexhill and Battle mentioned, they have some great memory recall, and it can be good to work along with young people from schools. It is essential that we have funding to continue that work and research into dementia because as I said earlier, more and more of us may succumb to that terrible illness. I look forward to the Minister setting out how plans for dementia research will be included in a national dementia strategy, and how the Government are supporting the development of essential new technologies in that space.

--- Later in debate ---

[Steven Bonnar (Coatbridge, Chryston and Bellshill) (SNP)]

I too commend the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for securing this debate and for her excellent contributions to it.

We have heard that dementia affects around 850,000 people in the United Kingdom—one in every 14 people over the age of 65, and one in every six over the age of 80. Dementia is one of the leading causes of death across the United Kingdom and currently, as we know, there is no cure. The most well-known impact of dementia on an individual is progressive memory loss, which affects both mental and physical abilities and makes it difficult to execute even the most basic of daily activities effectively and efficiently. When someone is diagnosed with dementia, it can be overwhelming, as they face several difficult challenges on the long road ahead.

We all know and have heard just how much dementia has affected many of our constituents and their loved ones during this awful pandemic. The House heard so lovingly from my hon. Friend the Member for Ochil and South Perthshire (John Nicolson) about his plight and the plight of his wonderful mother Marion. I have spoken to those who care for family members across my constituency of Coatbridge, Chryston and Bellshill, and they have expressed how much more difficult covid and the pandemic have made the experience, as the pandemic has presented its own new and unique challenges.

Not only does dementia cause harm and heartbreak to millions of families throughout the countries of the UK but it is completely unsustainable for our health and social care systems. The economic cost to the UK of caring for people with dementia is estimated to grow from the £24 billion it was in 2014 to £47 billion by 2050. Age is, of course, by far the biggest risk factor for a dementia diagnosis, and as our population ages the number of people diagnosed with dementia will increase. The number of people living with dementia in the UK is expected to exceed 1 million by 2025.

As we have heard, 90,000 people are currently living with dementia in homes all across Scotland. That is why the SNP Scottish Government published a dementia and covid-19 action plan in December 2020, to build on, continue and expand the national action taken since March 2020 to support people with dementia and their carers. The Scottish Government are working with partners such as Age Scotland to help dementia patients to get better support and have a bigger say in what works for them and in their individual care package.

The Scottish Government have pledged a further £1 million to help to tackle dementia in Scotland. Brian Sloan, the chief exec of Age Scotland, said:

“This funding will help address some of these challenges by shaping communities that work for those who have lived experience of dementia.”

That is a clear indication of the effectiveness of Scotland’s response. The Scottish Government have seen how the coronavirus pandemic has had a disproportionate impact on people with dementia. Through partnerships, they will help to grow the community support that has been considered critical to people and their families. I am of the belief that Scotland is also seeing positive results through our policy of integrated health and social care among health boards and local authorities. The Westminster Government should follow that lead.

Of course, Scotland is currently the only country in the United Kingdom with free personal care, which is extremely important support for people under the financial strains that dementia and living with dementia can place on families. People who are not in Scotland may wonder what that looks like: a dementia sufferer can receive up to four visits per day in their own home, where care is administered and the carer spends some time with them because, as the right hon. and gallant Member for Beckenham (Bob Stewart) pointed out, loneliness can be one of the biggest indicators that mean people simply give up. We must do everything we can to make sure that people live a fulfilling and wonderful life.

[Ms Lyn Brown]

Hear, hear!

[Steven Bonnar]

Thank you.

In 2017, the UK Government declared that the UK would be the most dementia- friendly country in the world by 2020. [Interruption.] The Minister nods his head, but unfortunately we know that that is not true: just look at the hundreds of dementia care homes in England that were discovered to be providing substandard care to their dementia patients.

A Care Quality Commission report found that one in every five homes specialising in dementia were rated as “inadequate” or “requiring improvement”. Some posed such a serious risk to people with dementia—because of filthy living conditions, poor infection control and poorly trained staff—that inspectors had to order them to be put into special measures. In total, 1,636 care homes are failing patients, according to findings described as “appalling” by charities and campaigners. They stated that immediate action was required to address the “unacceptable” state of dementia care across the country.

If we are to position the UK as the world leader in dementia—something we all want to see—we should not start by cutting the much-needed funding that was promised by the Government for dementia research. As we have heard, the 2019 Conservative party manifesto committed to address dementia by pledging to double funding for dementia research to more than £160 million per year. However, two years later and another broken promise later, we find ourselves in the same situation, with no plans from the Government to deliver on their manifesto pledge. The funding for dementia research for 2020 was £75.7 million—a decrease from £82.5 million in 2019 and from the high of £98.1 million in 2016.

What else do we need to say to persuade the Government to recognise the importance of funding dementia research in trials? Currently we have over 150 clinical trials worldwide examining potential dementia treatments. It is more pressing than ever that we can transform dementia diagnosis. We need early diagnosis of the diseases that cause dementia and we need to diagnose them more accurately; otherwise it will be too late for patients to benefit from potential new treatments. The Government should invest now in infrastructure, resources and the clinical workforce to build diagnostic capacity and support innovative ways of organising NHS services such as brain health clinics to offer new diagnostic pathways. I look forward to the Minister outlining how the Government intend to achieve that.

The Scottish Government have proven our commitment to dementia research with a one-off £75 million increase in funding for our universities to ensure that they can protect world-leading research programmes against the financial impacts of covid-19. That is exactly how we protect those we care about and those who care for us. The current prevalence rate of dementia among older people in the UK is about 7.1%, and of the four countries Scotland has the lowest prevalence rate, with England having the highest overall prevalence rate. With the growing trend and threat of dementia to our citizens, it is now time for this Government to act and to outline a proper plan to help combat the threat of dementia across these nations, with the goal of preventing people from developing the onset of dementia.

The UK Government can follow in the footsteps of Scotland and become the world leader in dementia research they told us they would be, but to do so they must deliver on their manifesto commitments to double the funding for dementia research, speed up progress in clinical trials, and ultimately—maybe only by the grace of God—help us to find the cure. We cannot allow any more time or opportunities to pass by as we seek to support those living with and at risk of dementia.

NHS Hysteroscopy Treatment

Baroness Brown of Silvertown Excerpts

Monday 31st January 2022 Commons Chamber

[Ms Lyn Brown (West Ham) (Lab)]

I am, frankly, very disappointed to have to be raising this issue again in this House. This is the ninth time I have spoken about this, and it is more than eight years since my first speech on this topic. However, the problem of pain and trauma caused during hysteroscopies has not gone away. I want to pay tribute to the Campaign Against Painful Hysteroscopy, who do so much to let women know that they are not alone, that their experience has not been singular, that they were not making it up and they were not hysterical; they were experiencing great pain and discomfort. That campaign offers comfort and a productive outlet for their utterly justifiable anger. My hope is that this Minister will not only take this issue away, but will commit today to getting action at a national level, because it is a true scandal that these horrific abuses are still taking place. Let me be really clear with people. Every time I speak, I have new stories, because women hear my speech as they reel from fresh abuses and they get in touch. So all these stories that I am going to recount today have happened since my last speech on this issue.

I will start with the story of Jane, who had a hysteroscopy late last year. Jane had been warned by her excellent GP that the specialist might attempt to talk her into a hysteroscopy without anaesthetic, and that she had the right to insist on proper pain relief. After all, she has several well-recognised risk factors for pain during hysteroscopy, including endometriosis, a tilted uterus, and never having had children. Fully aware of that, Jane received a letter for an appointment about the results of an ultrasound scan she had had. The letter said nothing about a hysteroscopy, and nothing about her risks or her right to anaesthetic, so she went along expecting simply to have a discussion with a consultant about the results of the scan. But when she got there, she was informed that the consultant wanted to do a hysteroscopy there and then. She said immediately she wanted a general anaesthetic, and explained that she had had terrible pain from similar procedures in the past. Shamefully, the consultant’s response was to laugh in her face and say

“if we gave a general anaesthetic to every woman who had a hysteroscopy the queue would be a mile long”.

To laugh at a woman in distress in that position, I find abhorrent.

Jane was scared. She shook but she felt she had no choice but to comply. She told the doctor and nurse what she had heard about the pain, but they told her not to believe everything she read. She told me that

“as soon as the speculum went in I felt immense pain that was absolutely unbearable...the doctor was having difficulty finding the opening to my cervix so twisted the speculum and dug around, which caused indescribable pain, I felt I might pass out, I had tunnel vision”—

and she was “shaking and hyperventilating.”

At that point, thank heavens, the procedure was stopped but, unbelievably, the doctor said that he simply did not understand why Jane was in so much pain and causing such a fuss, which only worried her more, because it increased her concern that she had cancer. Even after all that, the doctor was still unwilling to consider a proper anaesthetic. Instead, he prescribed a hormonal pessary and suggested that she come back for another go in a fortnight.

Jane was in a fog. She does not remember anything other than getting home and curling up on the sofa, shaking with shock. She has relived the experience over and over, unable to move on because of the threat that she would have to go through it all again without pain relief. She has had trouble sleeping and has had to take time off work because she cannot concentrate. Understandably, Jane believes that she has post-traumatic stress disorder. She told me that she was actually more afraid of having another brutal experience than she was of dealing with possible cancer. How much will the late detection of cancers resulting from this fear cost our NHS and our families? I emphasise to the Minister that this is not major surgery; it could be essentially painless if only proper anaesthetics were offered.

The last I heard, Jane will now have a hysteroscopy with a general anaesthetic. I am praying that she does not have cancer, because if she does, the months-long delay caused by her mistreatment and the callous attitude of that doctor could be deadly to her. What estimate have the Government made of the added cost of failed hysteroscopies that must then be repeated with anaesthetic? Jane is not alone in her experience and in having understandable distrust of the NHS and doctors as a result of her trauma.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Lady on her speech. I was there the last time that she brought this issue to the House, as I am tonight, because my wife has been through the experience that the hon. Lady referred to. As a result, I think it is important that I am here to support her not just for my wife, but for every other lady across the United Kingdom. Pain relief is a way of providing much needed reassurance for women who are having hysteroscopies. This is a potentially life-changing treatment and women must be enabled to be as comfortable as possible—I see how important that is. Some 35% of the women who undergo anaesthesia-free hysteroscopies reported severe pain. Does the hon. Lady agree that the pain medications and anaesthesia must be readily available for those who need it? No one should have to live in this day and age with severe pain that cannot be taken care of.

[Ms Brown]

I agree with the hon. Gentleman and I am grateful for his intervention. I know he has been in these debates with me, and he makes the same point: no woman should have to go through this. No woman should be held down while procedures happen because they are screaming with pain and they want the pain to stop.

Another woman who contacted me about a hysteroscopy that took place last year told me that she had never experienced so much pain—not from a hip operation, nor from having her spleen removed. As a result of her traumatic experience, she now has anxiety and has been prescribed tablets by her GP just to help her function with the day-to-day. Like Jane, she is losing sleep and no doubt her broader health has been harmed by this. She does not know whether she has cancer, but she told me that she is now too scared to go to the hospital for anything.

There are so many stories that I could have told today. I am sent so many of them, despite the fact that the issue does not get a huge amount of press. Women who experience this are seeking out me and the charity I work with to tell us about it. If there were more publicity, more women would come forward. I really hope that the Minister understands that this is an issue of patient safety, but also an issue of common decency. It is an issue of confidence in the medical professions and the NHS, and it will be costing us all, both in money and in lives, because problems simply are not being caught early enough.

[Liz Twist (Blaydon) (Lab)]

I have the privilege of co-chairing the all-party parliamentary group on women’s health. We held a meeting at the end of last year to talk about women and the health service, and I must admit that the meeting lit up when one of the medical people spoke about women’s experiences and, in particular, hysteroscopy. I could not believe what happened on my Twitter feed immediately afterwards. So many women were sharing their experiences, listening and saying, “We are entitled to have our experiences of pain validated, and to not have to go through that pain.” Does my hon. Friend agree that the women’s health strategy, which we will be talking about increasingly often, must involve accepting those experiences and seeking to listen more to women, validate their experiences and ensure that the right anaesthetic and treatments are provided?

[Ms Brown]

I entirely agree with my hon. Friend, and that will indeed be an ask I have of the Minister at the conclusion of my contribution. My hon. Friend is right: women are not listened to. When they tell a doctor, “This hurts. I am in pain and I can’t bear it,” their experiences are not considered valid. They are told that they are being hysterical or overreacting and that they need to be as strong as the other woman he saw last night, last week or whenever, and to not be such a baby in demanding that the procedure be stopped.

Another case from last year is that of Sandy. When Sandy was referred for a hysteroscopy, she was told that pain was a risk, but the information that followed about local pain relief gave her false reassurance. She assumed that it meant some kind of anaesthetic. When she met the clinician, he told her that it would be like period cramps. When she asked about pain relief, he just repeated, “No more than just period cramps, if there’s any pain at all.”

Sandy was well acquainted with period pains. She had had coils inserted and had given vaginal birth twice, one with no pain relief, so she knew she was tough and she thought she would be fine. But when the hysteroscope reached Sandy’s uterus, she felt

“the most incredible, searing, tearing pain I have ever experienced. I found the arms of the bed to grab onto and could hear myself shouting no no no stop stop stop.”

Madam Deputy Speaker, you will be glad to hear that on this occasion the clinician did actually stop, but I would say that by that point the damage had already been done. Sandy has no memory of any questions asked or what the clinicians said to her afterwards. She just remembers the pain, the shaking and the shock. She was completely and utterly dazed, but scant minutes after enduring this, Sandy was ushered out the door. She was given no time to rest and recover, and she was so confused because she had been made to feel that she had made a terrible fuss about nothing. Sandy then had to drive herself home. She told me that she has gone from being fearless and confident to being terrified of going back at all.

Finally, I want to mention Penny. She told me what happened after her “brutally painful failed hysteroscopy”. She strongly, and understandably, believes that she was misled about the risk of pain, because if she had known, there is no way she would have consented to having the procedure with just painkillers. Immediately after Penny went through the same agony that I have just described, she had an assessment with a nurse. The nurse told Penny how she had seen many women like her traumatised and in tears after hysteroscopies. The nurse said that she would never, ever go without a full anaesthetic herself, and that to do the procedure on women with no anaesthetic was barbaric. Penny was deeply and rightly angry to hear this, and the nurse was very clear that women were going through this without being fully informed of the risks.

Let us be really clear: the women I have spoken of today are the tip of a massive iceberg. That nurse is right, the GP I mentioned earlier in the debate is right, and there are many others within the NHS who recognise that this is simply unacceptable. So what needs to change? Frankly, there is still a massive problem with the attitude that many doctors take towards women patients. Our words and our wishes are ignored, and when our words are ignored, our rights are ignored. That has got to end, and I believe that that takes a culture of change. I do not accept that there are just a few badly trained, uncaring or even sadistic doctors. There is a broader problem that the Government and the NHS must address.

The Government have talked previously about a women’s health agenda, and before that there was the women’s health taskforce. Now, there is going to be a women’s health strategy. Believe me, the word “strategy” is music to my ears, but I want a guarantee from the Minister today that tackling painful hysteroscopy will be a core issue. That is my first ask. The patient groups that have been raising this issue so forcefully over many years must have a seat at the table in discussing and monitoring that strategy. These issues are common and the structure of the NHS is complex and obscure; it is failing to listen. So we need to find ways to ensure that patient outcomes for hysteroscopies are measured and monitored alongside the strategy.

My second ask is for all NHS trusts to offer patients who need a hysteroscopy a full range of anaesthetics and to inform them accurately about the risk factors for serious pain, so that all women can make an informed decision. That will require more anaesthetists and theatre capacity for hysteroscopy patients. My third ask is that the Government ensure that this investment is made, and that the commissioning decisions required are being made by NHS trusts. In my view, this is something that the women’s health strategy should be measuring and monitoring, alongside robust evidence on women’s experiences of NHS hysteroscopy, over the coming years.

How many hospital trusts are actually following the guidance to offer anaesthetics up front to all hysteroscopy patients? How many offer a range of effective anaesthetics and have trained staff to discuss women’s risk factors so that they are given an informed choice? How many women are forced to endure a traumatic failed hysteroscopy without pain relief, with public money wasted as a result, only to have another procedure under anaesthetic?

How many patients do not even know they are going to be asked to have a hysteroscopy until they attend an appointment, with all the pressure that that involves? Can Members imagine going to a doctor in a hospital because of a fear that they have cancer and that doctor telling them they are going to do a hysteroscopy right now? Can Members imagine how much pressure there is on a woman to accept that procedure there and then because of the fear of what might be there and how long they might have to wait? They do not want to upset the doctor, do they? They might have something really awful that needs to be attended to immediately.

Any women’s health strategy worth its name would make sure that the answers to the questions I have asked are known and that we are moving in the right direction on all those issues. I am delighted to say that the best practice tariff on hysteroscopy, which financially incentivised the mistreatment of women, is now gone. We had a system under which our hospitals were paid more for hysteroscopies done without anaesthetic than they were paid for those done with anaesthetic. I am thankful that that incentivised mistreatment of women has now gone. That is a massive achievement for the campaign.

Several previous Ministers have engaged with me on this issue—the hon. Member for Thurrock (Jackie Doyle-Price) was very good on it when we spoke—and I thank them for hearing me. One benefit is that trusts are now paid the same amount for out-patient and day-case hysteroscopies. That is far better than it was, but it can still cause problems, because day-case procedures with anaesthetic cost more. If a trust will not be compensated for the difference, it might still decide to try to limit access to pain relief, because it will know that if anaesthetic is given, it will not receive a benefit in kind to pay for that procedure. We need to know that individual trusts are actually changing their behaviour and attitude in response to the progress that has been made. If they are not, we might need further action to ensure that no trust will lose money by doing the right thing and providing the pain relief that a woman needs.

I am sure the Minister will be slightly alarmed by an increase in demand for anaesthetists and theatres, and we all understand the massive covid backlog that the Government and the NHS face. I reassure the Minister that both regional or spinal anaesthetic and intravenous sedation with anaesthesia may be good options for many hysteroscopy patients, depending on their needs and risk factors. The NHS has got to offer a real choice in the range of anaesthetics, not a false choice between a general anaesthetic and no effective pain relief at all. It is simply wrong that if a man needs a colonoscopy, the chances are that he will be offered an effective anaesthetic without question, whereas if a woman needs a hysteroscopy, they may be forced to endure such terrible trauma that it shakes them to the very core ,and then made to feel pathetic when they cry out in pain.

I am not going to stop raising this issue, and the courageous women I have been working with will not stop either. I want to work with the Minister on this issue, as I have with other Ministers in the past, and I hope the Government engage fully, because we need to end this scandal and ensure that women are treated like human beings in every single part of our NHS.

[The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)]

I congratulate the hon. Member for West Ham (Ms Brown) on securing this debate. I thank her for all her hard work. I am very sorry that she has been speaking about this issue for nine years and is still having to share some of the stories and experiences of women who have contacted her, whether that is Jane, who was unaware of the potential for pain when having such a procedure—women being investigated for endometriosis often wait eight to 10 years to get a diagnosis, so if there is an offer of a procedure to find the cause of their problems, of course they will grab it and not necessarily ask questions about what is involved; or Sandy, who got no information on pain relief at all, or Penny. Penny was warned by the nurse—often nurses are attuned to these things—and was worried about what the outcomes were, but went ahead with the procedure. These are shocking tales that should not be happening in this day and age. I appreciate everything that the hon. Lady says, and I offer that I will be happy to work with her on this issue.

As Members will be aware, hysteroscopy is an essential tool to get to the bottom of many complaints. Whether that is cancer, endometriosis, vaginal bleeding or pelvic pain, it is a necessary test. While other tests can be used, they do not necessarily get to the level of clinical detail that a hysteroscopy can provide for clinicians. It is therefore important that the test is available for women, but in a way that does not create the problems we have heard about this evening.

Many women can have the procedure as out-patients in 10 to 15 minutes and it can be relatively painless, but many women, as we have heard today, experience great pain, which puts them off from coming back if they need further procedures, as the hon. Lady has said. If they share that story with other women they know, it can put them off from coming forward, too.

Unfortunately the NHS does not collect data on the number of women who experience pain during a hysteroscopy or the women who fail to have the hysteroscopy and then need to have either a general anaesthetic or further anaesthetic later on. I am aware that the Campaign Against Painful Hysteroscopy estimates that between 5% and 25% of women are affected and have reported severe pain, and frankly that is not good enough. I welcome that NHS England will be meeting the campaign group on 4 February. I look forward to hearing the outcome of that meeting, and I will be following up any recommendations after that.

The hon. Lady is right that for many procedures a man would undertake, anaesthetic is probably routinely provided or offered. We need to ensure that the same applies to those procedures that women have to go through.

There are guidelines in place, and I spoke only last week to the president of the Royal College of Obstetricians and Gynaecologists, because I knew this debate was coming up. Those guidelines were published back in 2011, and they need updating. The guidelines focus on minimising pain and optimising the woman’s experience, as well as making specific recommendations on how to reduce pain, but as the hon. Lady said, we do not have the information to know who is and is not following those guidelines. We are therefore not in a position to say whether, if those guidelines were followed, many women would not experience pain, and that is the difficulty we have. The data is therefore crucial.

In the last debate that the hon. Lady secured on this issue, which I think was in September 2020, my predecessor, the right hon. Member for Mid Bedfordshire (Ms Dorries), informed the House that to ensure the recommendations were robust and up to date, the royal college would be producing a second edition, in which it will assess whether the current guidelines are effective and are being used. The second edition is being jointly developed with the British Society for Gynaecological Endoscopy, and I am assured that patients’ voices will be at the heart of its development. The royal college has informed me that good progress is being made, and that it will have the updated guidelines by next year.

[Ms Brown]

Can I ask specifically that we involve the campaign, because that would be one way of assuring me that the voices of patients are being heard?

[Maria Caulfield]

I said to the president that I would follow up after the debate, so I can certainly make that request.

The royal college has also said that it is producing a good practice paper specifically on pain relief and how informed decisions should be made, particularly in out-patient hysteroscopy procedures. It is going through the peer review process next month and will be published shortly afterwards. Once it is published, I would be very keen to hear from campaign representatives about whether they feel that those guidelines would make a difference to them in a practical session.

It is crucial that women who are offered a hysteroscopy are given the information they need to make an informed decision, given that they have sometimes waited a long time for the appointment and that serious clinical conditions can be diagnosed from it. That should include information about potential pain, options for pain management and alternative procedures that could be used.

The Department and NHS England recommend that, as part of good practice, the royal college’s patient information leaflet, which was published in 2018, should be provided to patients to aid decision making. I think that should be provided in advance of the appointment, because it is often hard for someone to take in all that information in the midst of a consultation. Again, I would be interested to hear from the campaign whether that is happening in practice.

The House will also be interested to learn that the British Society for Gynaecological Endoscopy recently published a statement to clarify that from the outset women should be offered

“the choice of having the procedure performed as a day case…under general or regional anaesthetic”.

It further asserts that the procedure should be stopped immediately if a woman experiences pain.

I encourage any woman offered a hysteroscopy to read those valuable resources along with any additional resources provided by their clinician. I agree with the hon. Lady that women often do not understand what a hysteroscopy is or what is involved, and debates such as this highlight how important the procedure is, the options around pain relief and the different anaesthetics available.

The hon. Lady touched on the tariff. Previously, there was a different rate of payment for hysteroscopies carried out in an out-patient setting compared with in-patient procedures. I recognise that that is a concern for many hon. Members on both sides of the House because of how it affects patient choice and the choices that are offered to them. In the last debate on the topic, my predecessor announced a statutory consultation. I am pleased to say that as of 1 April, hysteroscopy out-patient procedures will no longer attract a higher tariff than elective procedures as an in-patient day case. That will hopefully make a difference to the choices offered to women.

[Ms Brown]

That is absolutely true and we are delighted about that; I welcomed it in my speech. The problem that we now have is that if a hospital offers an anaesthetic, it does not get compensated for the resource that it has used. We need to go one step further to ensure that there are no incentives for not offering women proper anaesthetic.

[Maria Caulfield]

I completely agree with the hon. Lady. She made a point about having the data to see how many hysteroscopies fail and whether that money could be better spent on offering an anaesthetic up front to many women. I do not have an answer to that, but it would be interesting to look at that information.

Alongside clinical guidelines and access to high-quality patient information, I stress the importance of the voices of patients, which are critical at every stage of the treatment pathway. Decisions should always be discussed and shared between clinician and patient. The Government are committed to ensuring that the voices of women in particular are more central in the healthcare system.

The women’s health strategy has been touched on several times. We have also taken key learnings from reports such as the Cumberlege review, where women were talking for a long time about the issues that they faced before anyone truly listened. We need to improve that so we are not learning from such incidents after nine years of raising them on the Floor of the House. The women’s health strategy will include gynae issues such as endometriosis and polycystic ovary disease, which are conditions that do need a hysteroscopy, so I am pretty confident that we will cover that in the strategy. We will also have a women’s health ambassador—they will be appointed in the coming weeks; applications are almost closed—with whom I will meet. I want them to lead on these issues, where they can be a real voice for patients, do a deep dive into what is happening at the coalface and speak up for women if it is not working. We have guidelines, but we do not know whether they are being used in clinical practice. From what the hon. Lady says, it sounds like there are clearly issues that need to be addressed.

I reassure the hon. Lady that I am happy to work with her on this issue. Improving the tariffs is one thing, but there are still women who are not getting the information that they need to make informed decisions about pain relief and anaesthetic that could be available. I welcome the new information from the Royal College of Obstetricians and Gynaecologists on pain relief specifically for this procedure, which will be out next month, and I will feed back to it on updating the guidelines to ensure that patients are involved in the process.

I thank the hon. Lady for raising this important matter. I hope that we have raised its profile and that women are more aware of their options. When they go to that clinic appointment, they can ask for pain relief, they can have it as an in-patient, and they do not need to have it right there, right then. I look forward to continuing to work with her and all Members across the House to ensure that women are offered a hysteroscopy and can access the information they need and the care they deserve.

Eye Health and Macular Disease

Baroness Brown of Silvertown Excerpts

Tuesday 11th January 2022 Westminster Hall

[Ms Lyn Brown (West Ham) (Lab)]

It is a genuine pleasure to serve under your chairmanship, Ms Nokes. I wish you, and everybody here, a happy new year.

I thank the hon. Member for Strangford (Jim Shannon) for securing the debate on this neglected topic. Not for the first time, my comments will echo those of my right hon. Friend the Member for Hayes and Harlington (John McDonnell), because today I will focus on the damage that refractive eye surgeries can do to health. In particular, I would like to talk about my constituent, Darren Clixby.

Like many of us, Darren had lived much of his life needing glasses or contact lenses for short sight. As many people have, he heard the messages about laser eye surgery, and its promise to make life easier and better. He also heard the statistics that are bandied about regarding the rarity of serious complications, so he paid his money and went for it in January 2009, but I am sorry to say that the damage immediately after the surgery was awful.

Darren was in tremendous pain. He could not open his eyes at all until the following day and, when he did, his vision was unrecognisable. It was filled with sunbursts coming from light sources, with halos arounds them, with images that overlapped and with many floaters, which are small objects that persistently stay in the vision no matter where someone looks; I have loads of them in my eyes.

Having such damaged vision was distracting, disorientating and very distressing. Darren could not function. He had been told that this was merely a temporary effect and that it would go away after surgery, so he took sick leave and he persevered in that hope. The weeks passed, then the months, and the problems with his vision simply did not go away. Understandably, Darren became increasingly distraught, anxious and depressed. At check-ups, he was told time and again that it was temporary. He was fobbed off with steroid eye drops, which did nothing.

He was then offered another procedure with the same company, using an alternative refractive surgery technique, then another, via a private referral to Moorfields Eye Hospital, and then another. Darren has now had five separate refractive eye surgeries, four of which were to correct the damage of the first. None of these operations have helped. In fact, Darren believes they have just made things worse.

All of this time, Darren’s mental health was deteriorating. He found his work as a solicitor increasingly impossible because of the psychological damage that resulted in a diagnosis of severe depression and anxiety, which remains 13 years on. He resigned from his job and endured 18 months out of work. Even now, after getting a new legal role, he has found it difficult to continue and he had to resign 18 months after starting that job. Eventually, in 2012, Darren had to stop the process of repeated surgeries, and disengage to protect what was left of his mental health. It has taken him many years to come to terms with what has been done.

[Jim Shannon]

I thank the hon. Lady for sharing what surgery can be like. I have a diabetic constituent who asked a consultant if laser surgery would be appropriate. Unfortunately, as a result of that surgery he lost his eyesight in its entirety. Today, he has no sight in either eye. When it comes to surgery, the hon. Lady is absolutely right and I thank her for the reminder that it does not always work. People need to be careful and aware of that.

[Ms Lyn Brown]

Darren now believes that there is nothing that can be done significantly to repair the damage to his sight. He has uncomfortable, dry eyes every day of his life, which become far worse after reading or concentrating for long periods. He cannot see clearly in low-light conditions or drive after dark. Even crossing the road can be dangerous because it is hard to judge the distance between cars.

Darren believes that he was not fully informed about the risks before his surgery. He has no trust in what little regulation or self-regulation exists via the General Optical Council and the General Medical Council. This was a private, elective procedure that Darren paid for. Surely to heavens, the company that performed the surgery should be responsible for the best possible aftercare, and for making it right. In 2017, Darren again contacted the company responsible for the original surgery. It was made absolutely clear that it would offer him nothing. Effectively, it told him to go away, to stop being a nuisance and to stop getting in the way, frankly, of it making more money.

As always, the NHS has been left to pick up the pieces after poorly regulated private medicine has failed. I ask the Minister how much is this costing the NHS across the country? It would be good to know. Does she have any information to hand on that? We need to create a system where patients are genuinely informed about the real risks; a system where there is proper recourse to a regulator when things go wrong, and where private companies are held responsible for their failings and the cost.

NHS Pay

Baroness Brown of Silvertown Excerpts

Wednesday 24th March 2021 Westminster Hall

[Ms Lyn Brown (West Ham) (Lab) [V]]

It is a real pleasure to see you in the Chair, Mr Hosie—and looking so well. I thank my hon. Friends the Members for Liverpool, Wavertree (Paula Barker), for Luton South (Rachel Hopkins) and for Birkenhead (Mick Whitley) for securing this debate.

For the last year, as has been said, our NHS staff have been toiling night and day, working bravely and selflessly to protect us from this terrible virus. Even before this pandemic, NHS staff were working an extra 1.1 million hours of unpaid overtime—it is a disgrace. It is those same nurses, doctors, porters, ambulance drivers, paramedics and so many more who have kept our wonderful NHS going. Even when they were on the brink of being overwhelmed by the fifth highest covid death rate in the world, and despite the terrible trauma they have experienced, our doctors and nurses have held people’s hands as they died alone. They have watched the fear and borne the grief of 126,000 people and families, and counting.

Now our NHS staff are on the brink of being overwhelmed too—they are simply exhausted. They have done their jobs bravely night after night, day after day, and they are still doing their jobs, with barely a break, a full year on. My gratitude is beyond words. But we must recognise that NHS staff bear scars from the past year that will last. Almost 60% of nurses experienced a mental health problem during that first wave. In some trusts, the proportion of staff absences relating to mental ill health has doubled.

Our NHS bears the scars too. In January, more than 300,000 people waited more than a year for treatment in hospital, and that figure will have only grown. Our NHS will recover its full health and wellbeing when its staff can recover theirs. That requires action to guarantee decent pay, conditions and, basically, respect. After all our NHS has gone through, if we offer real-terms pay cuts, rather than what our NHS heroes deserve, our gratitude will prove hollow, superficial and meaningless, and it will damage our NHS further. How disgraceful is that? How much more will the health of communities suffer?

The people who have cared for us deserve so much more. This Government must understand the needs of the NHS, deliver for its staff and deliver now.

Covid-19 Vaccine: Take-up Rates in London

Baroness Brown of Silvertown Excerpts

Tuesday 9th March 2021 Westminster Hall

[Ms Lyn Brown (West Ham) (Lab) [V]]

The truth is that the vaccine roll-out has not worked as well as it might for the vulnerable of London. In West Ham, it has been about age. We are one of the youngest areas in Europe and we have had the highest excess deaths. The numbers in the highest-priority groups, especially the over-70s and 80s, are low; consequently, our areas were allocated vaccine supplies at a level far below what could have been delivered. We have had disproportionately large numbers with clinical vulnerabilities—illness linked to higher levels of deprivation—but they were in the top four priority groups, so clinicians have only just started to vaccinate them.

Sky News found that Newham had the highest excess deaths in the UK between March and mid-January. Some 15 of the top 20 areas for excess deaths are in London. Local clinicians have constantly called for the flexibility to vaccinate younger people with clinical vulnerabilities, and I know that Ministers will remember that I have echoed those calls. However, I am not here just to complain, because I am very grateful that Ministers and officials have listened, and I am hopeful that London CCGs will be given greater flexibility to deliver second jabs. More than anything, we have to focus on the role of deprivation, because it is the major barrier to speedy vaccinations.

GP data is limited in areas such as mine because people move, from one short private rental to another, over and again, and so many are in temporary accommodation. Those in poverty and insecure work are less likely to be able to keep their phone contracts and hang on to the same number, which makes it hard when so many vaccine appointments are organised by text. People do not have access to broadband or mobile data, and the consequences are clear.

For the affluent group in DQ5, uptake has been 60%. For the most deprived group, DQ1, it has been just 37%, and it drops at each step, from DQ5 to DQ1. We must find better ways to address this, because we are letting down the vulnerable and it is hindering our collective ability to fight this virus. I would therefore like to hear more from the Minister today about how we will tackle this.

But I do not want to finish without heaping massive praise on our NHS locally—our fantastic local GPs, our local public health teams and all our volunteers. I genuinely cannot thank them enough. They are working together with such tenacity and extraordinary commitment, and I thank them from the bottom of my heart.

Covid-19

Baroness Brown of Silvertown Excerpts

Tuesday 12th January 2021 Commons Chamber

[Ms Lyn Brown (West Ham) (Lab) [V]]

This crisis has created unbearable pressure on our nurses, doctors and hospital leaders, and I want to thank them for all they do. Many NHS staff are effectively the walking wounded. They have been operational without a break, exhausted, stressed and traumatised, for so long. Today, I want assurances that when decisions are made about how and when to end this lockdown, Ministers will be guided only by science, resources and the trajectory of the virus.

When staff are so stretched, local decision making about resources is paramount. Last week, we learned that the Nightingale in Newham is to be open for patients as well as for vaccination, but there is suspicion in my patch that some decisions are not based on clinical need, because there have never been enough staff to run the Nightingale at a reasonable capacity. We are struggling to staff the facilities that we have got. Where are all these additional medics coming from? We need sensible local decisions. For heaven’s sake, we have the highest infection rate in London.

I know that we have absolutely no choice but to lock down hard to save lives, but that has to be matched with fair support for all. I am thinking especially about the hospitality, events and cultural sector, which is struggling. The wedding industry is huge in Newham. It has had to push back the time when it can take bookings again, and it is struggling. So is the supply chain and its employees, and wedding dress shops, caterers and jewellers too.

We pray that the vaccine programme works, and that it works rapidly, but vulnerable sectors in our economy will need support for months. Yesterday, however, the Chancellor offered no additional support—nothing new to protect struggling sectors of the economy, nothing for struggling families, and still absolutely nothing for those excluded from support time and again. Why did he bother to turn up?

Why are we seeing children living in poverty still with no IT devices or broadband, and why are they now being cheated out of food that the public purse paid for? Surely, every single Member has seen the paltry rations we are told 30 quid pays for. Seriously, where are they shopping? We knew for months that this moment was coming again. This ain’t our first lockdown—we knew what the implications would be. There are absolutely no excuses for constantly doing too little, too late.

Covid-19

Baroness Brown of Silvertown Excerpts

Thursday 22nd October 2020 Commons Chamber

[Ms Lyn Brown (West Ham) (Lab)]

In West Ham, we had the highest number of people furloughed in the country—almost 30,000. All of those people and so many more who are self-employed are potentially at risk of real economic hardship, and we simply do not know how many more will lose their work over the coming winter. The scope for damage to our already deprived and very vulnerable communities in Newham is vast.

As we know, there are differences in economies across the country. In my constituency, many parents work two or three jobs to pay their rent and their living costs. Let me tell Members quickly what it is like in Newham. The lowest quartile of private rent is higher than the lowest quartile of earnings. A month’s wages does not even cover the rent on its own. In many cases, if parents lose one source of income they will be under threat of homelessness and it will immediately mean cutting back on the things that children need and that parents want to provide, such as food, clothes, shoes for the winter, internet access and books. In this wealthy country of ours, losing that second or third job will leave parents with no choice but to cut back on food—first for themselves and then for their children. We know that when parents are pushed into poverty, the impacts can be lifelong on their children’s health, education and opportunity.

Last week, the End Child Poverty coalition estimated that almost 20,000 children were in poverty in West Ham alone—20,000 children! That is more than half the children in our local schools, and those numbers are from before the pandemic began. We have 20,000 children living in poverty in just one constituency. I worry about how bad this is going to get even if the Chancellor does not follow through with his threat to cut universal credit next year, and I hope to God he does not.

Around 575 school days have been lost since March. Only 8% of children with special educational needs and disabilities or under the protection of a social worker attended school during lockdown—8%! How can schools or local authorities identify the children who are at risk of abuse or neglect when they are not being seen? Self-isolation for covid is a really quick excuse that can be used for everything. Our services need to find new ways to proactively check children at risk and they need the resources to enable them to do that.

In my area, county lines see gangs grooming children with life-destroying consequences. This problem is now even more acute, because normally extended absences from schools are one of the clear signs that a child is being exploited to run drugs and put at risk of seeing and doing things that no young person should see or do. If preventative support is not given, it will create more damage in our communities and more costs for the public purse in the future, but most of all it will kill the hopes and the dreams of the children and the parents in deprived communities, cause much pain and waste so, so much potential.

Botulinum Toxin and Cosmetic Fillers (Children) Bill

Baroness Brown of Silvertown Excerpts

2nd reading & 2nd reading: House of Commons
Friday 16th October 2020 Commons Chamber

[Anthony Mangnall]

I hope that my hon. Friend will take it as a compliment when I say that she is ageing beautifully.

[Ms Lyn Brown (West Ham) (Lab)]

I have sat through this debate and been a little discomforted by some of the remarks that have been made. I say that very gently. I support the hon. Member for Stourbridge (Suzanne Webb) in her gallant attempts to get an understanding in this Chamber that young women and young men are beautiful in who they are and not in what they have done to them. That is the message that we should be sending out. I know that I have aged wonderfully, so I do not need the hon. Gentleman to tell me so. May I just emphasise the hon. Lady’s words, as I completely and utterly agree with the position that she has been enunciating over the past 20 minutes?

[Anthony Mangnall]

I thank the hon. Lady for making that very important point, and I take her guidance incredibly sincerely. That brings me to the point made by my hon. Friends the Members for East Surrey and for Hastings and Rye (Sally-Ann Hart), which is that every child is beautiful and that body positivity as we grow up is incredibly important. We are not asking anybody to change their image. I thank the hon. Lady for her point; I am always happy to take guidance on how to perform in the Chamber.

The impact of social media is long lasting, and our newspapers and media have become more and more emboldened about it.

NHS Hysteroscopy Treatment

Baroness Brown of Silvertown Excerpts

Thursday 24th September 2020 Commons Chamber

[Ms Lyn Brown (West Ham) (Lab)]

I am really grateful to you, Madam Deputy Speaker, and it is really good to see you.

This is the eighth time I have raised in this House the way women are treated by the NHS when they need a hysteroscopy. I have always had a sympathetic hearing. Throughout the years, I have given voice to an ever-growing group of courageous women, the Campaign Against Painful Hysteroscopy. I am sad to tell the House that the issue has not been resolved. Far from it. Women are still being denied the right to provide informed consent and having their pain ignored while a procedure is performed, and some suffer lasting trauma as a result of a hysteroscopy.

For those who do not know, a hysteroscopy involves a camera probe being inserted into the womb, past the cervix. Sometimes, a sample will be cut away from the woman’s womb for examination—it will be cut away from her womb. A hysteroscopy can be an important tool for diagnosing the causes of common problems, such as unusually heavy periods, unexplained pain or bleeding. It can enable life-saving treatment to begin, or provide invaluable reassurance that a problem being experienced is not caused by cancer.

It is true that for some women, sometimes, a hysteroscopy causes only minor discomfort, but for others it causes agony and a sense of violation, because hysteroscopies are often carried out in NHS hospitals with little or no anaesthetic. Frequently, women are simply advised to take paracetamol or ibuprofen for the pain.

[Jim Shannon (Strangford) (DUP)]

First, may I say how nice it is to see the hon. Lady back in the Chamber? I am very pleased to see her.

Someone very close to me is going through this particular thing at the moment, so I understand exactly what the hon. Lady refers to. Does she agree that some women’s experience of this treatment is truly extreme, and that pain medication must be made available for those who need it, as opposed to stopping and sometimes redoing the procedure?

[Ms Brown]

The hon. Gentleman is absolutely right. It is a delight to see him in his place, too. I will come to the lack of pain relief for women and just how damaging that can be for them, not only in that moment but often for their ongoing healthcare, because it creates fear and a barrier.

Massively improved information leaflets have been produced by the Royal College of Obstetricians and Gynaecologists, in collaboration with patients. I am also pleased to note that the NHS website, which I quoted from in the last debate, has now been changed to recognise that some women experience severe pain and a general anaesthetic should be an option. However, many women having a hysteroscopy are still not being given this essential information. They still are not having the risk of severe pain discussed with them properly, and they still are not having the option of a more effective anaesthetic offered freely. In truth, these women cannot give genuinely informed consent, and therefore their rights as patients are being violated.

Telling the story of your trauma is very difficult. The excellent women at the Campaign Against Painful Hysteroscopy are still a relatively small group. Despite that, the campaign has collected 1,500 personal accounts of painful hysteroscopy. Previously in this House, I have told the stories of women who have been held down as they tried to stop the procedure, who have collapsed from shock, bleeding in hospital car parks afterwards, and who have been criticised by doctors for their supposedly low pain thresholds because apparently “most women are fine with it”. Today I will raise the voices of three very recent hysteroscopy patients, because I want the Minister to know that this barbarism is still taking place.

Rebecca had a hysteroscopy last year. She was given no information before her appointment, received no warnings about severe pain and was not offered sedation. Fortunately, Rebecca had had a similar painful procedure before, so she asked for pain relief and was offered a local anaesthetic injected into her cervix. That, in itself, was painful, but she hoped beyond hope that it would be worth it, and the doctor reassured her that the procedure had been massively improved. Instead, Rebecca said:

“As the probe was inserted I struggled to believe how severe that pain was. As the biopsies were taken… I could feel my insides being cut away and I had absolutely NOTHING to address the agony of it all! I was trying not to scream, very close to vomiting and fainting. In trying to contain my screams I couldn’t speak—if I had, the screams would have ‘escaped’ and I knew that they would be deafening. The procedure seemed to go on and on. It was barbaric and, as I hadn’t been given any warning, I felt panicked and unsafe.”

After they were “finished” with her, in her words, she says that no one cared that she felt faint, was close to tears and was struggling to walk. Rebecca tells me she felt conned, and not treated as a human being but

“an object to cut bits out of”.

[Rushanara Ali (Bethnal Green and Bow) (Lab)]

I am grateful to my hon. Friend for highlighting what many women have been suffering in silence. The Minister’s reaction to this is profound. Does my hon. Friend agree that the Government must ensure that the national health service provides proper guidance and instruction to practitioners, so that women do not suffer in the way her constituent did?

[Ms Brown]

The reason I am here tonight is to continue the campaign, because it has been going on for some years. I first spoke about this in an Adjournment debate, and an hon. Gentleman I know who sat on the Front Bench took it back to the Department of Health. This campaign has gone on for quite a long time.

Let me tell the House about Vidya. Vidya had a terrible experience with hysteroscopy earlier this year. Vidya has had a vaginal birth. She has experienced that pain, but when the camera was inserted into her womb, Vidya felt such agony that she was not even able to tell the doctor to stop. Like Rebecca, she simply could not scream out. Vidya had not been asked to sign an informed consent form. She was not asked about the level of pain she was experiencing at any time. She said:

“I can’t eat, I can’t go out, I cannot stop reliving the agony in my mind. If I sleep I wake up with terrifying nightmares. I can’t stop crying.”

Like so many of the women who have had to go through this, Vidya has lost trust in healthcare professionals and in our NHS, and I think she is likely to have post-traumatic stress disorder.

I would also like to talk about Alison. She was completely unaware that she was going to have a hysteroscopy until she arrived at the hospital. She had not been sent a leaflet or told anything to prepare her. She had not even had a paracetamol. She said:

“The pain was like I had been thrown into full-on labour contractions. I was crying and screaming out…panting…my heart was racing. The pain was off the scale. After I left the hospital crying in my sister’s arms, she had to help me to the car. I cried solid for 14 hours. This will stay with me the rest of my life.”

Alison’s hysteroscopy took place last Wednesday. These violations of patient dignity and rights are still happening regularly, seven years on. They have to be stopped. I would be happy to send the survey to the Minister, as I have done with previous Ministers, and I hope she will find the time to read through the accounts herself.

Personal experiences are the most important thing here, but there is also new scientific evidence. On 14 September this year, the British Journal of Anaesthesia published an analysis of eight years of data on hysteroscopy outpatients. It found that 18% of patients reported pain at a level of seven or more out of 10, and only 8% reported no pain. Almost 40% of patients were given no pain relief and only 2% were given a local anaesthetic. The doctors and their patients reported back. The clinicians’ judgments about pain seemed to be the very opposite of what their patients actually felt. The doctors who had given an anaesthetic, even a low dose, reported observing very little pain. Sadly, they were not seeing the reality of their patients’ experience. Their patients reported feeling pain when the doctors said there was none. The study suggests that the doctors are, frankly, terrible at judging the extent of the pain of the women in front of them. It also suggests that local anaesthetics are not enough for many women.

We know that our NHS is overwhelmed by covid. We all understand the pressure that the NHS and the Department of Health and Social Care are under. I also understand the pressure that Ministers must be under, but I hope that the Minister will commit, like the last Minister, to taking forward this issue quickly to ensure that the necessary change happens. In January, I asked if pain during hysteroscopy could be included on the agenda of the women’s health taskforce of England. I was told that the taskforce would be open to it, but then came covid. So can the Minister tell me whether the taskforce has met since January? Has it discussed the issue of suffering during hysteroscopy? If not, will she commit to including it when the taskforce next meets?

Also in January, I followed up the most fundamental changes that I think we need to see. The NHS is currently actively encouraging hospitals to perform hysteroscopies as outpatient procedures, with no possibility of a general anaesthetic or other sedation, through the ironically named NHS best practice tariff. Due to the tariff, an NHS manager’s trust will lose money if it provides a general anaesthetic. I have raised the problem of the best practice tariff several times now. Last year, I sent submissions to the utterly opaque and unaccountable consultation conducted by NHS Improvement—also ironic. Like many women of the campaign, I did not even receive a proper response. That is simply a disgrace. Women must not be ignored. We must see the change we seek.

In my last debate in December 2018, I had four straightforward asks. Sadly, they are still relevant today. I want to see: better information to enable informed consent; improved training, especially on the risk factors and forms of pain relief that doctors are trained to offer; every trust properly funded for the most effective and necessary forms of anaesthetic appropriate to hysteroscopy patients; and, finally, permanent removal of the perverse financial incentive that puts more women at risk of trauma. I hope the Minister will tell us about what action the Government might take on each of those.

Every time I have raised the experiences of the many women who have suffered as a result of hysteroscopy, I have had a genuinely sympathetic response. I genuinely believed that the former Minister, the hon. Member for Thurrock (Jackie Doyle-Price), was taking forward our case within Government, but the work she started did not seem to be allowed to come to fruition. I have to ask why.

If women’s health, informed consent and patient safety are genuine priorities for the Government, I hope to leave today with genuine optimism and renewed confidence that, with the new Minister, our campaign will finally have its success. We cannot be satisfied with sympathy—it is not enough. We need action. The Government must finally bring this sorry state of affairs to a conclusion so that women can be assured that, if they need a hysteroscopy on the NHS, they will be in safe, caring and sensitive hands.

[The Minister for Patient Safety, Mental Health and Suicide Prevention (Ms Nadine Dorries)]

Wow. That was certainly a moving Adjournment speech. I thank the hon. Member, who knows she has my respect. We have been here together for many years, and I have to say that I am truly moved—more than moved—by the accounts of Rebecca, Vidya and Alison. Those stories are incredibly impactful because we know they are real and because, as women, we understand exactly what they are relaying in their experiences in a way that—I am sorry—chaps just do not.

The hon. Member referred to being here eight times. I think I have some good news for her in my response, and that is because she has brought this issue back here eight times. What I am about to say is in no small part due to her persistence. We all know that, in this place, very little happens overnight. The only way we achieve change is by doggedly continuing to push until something happens. I think she will be pleased with what I am about to tell her, but there is also something we will need her and the campaign to do to continue the momentum.

I thank the hon. Member for her continued campaigning, and I am delighted to respond to the debate. A hysteroscopy can be an essential tool in the diagnosis and treatment of conditions. What she referred to in, I think, Rebecca’s experience was a biopsy that is taken to look at tissues, for various reasons. Hysteroscopies are most important in investigating unexplained and distressing problems—they are a timely diagnosis tool—and can be used as a process for dilation and curettage. There are many reasons why women need them.

I am almost loth to read out these words—the hon. Member can tell I am going off script here—but the answer always is, “It’s a very quick procedure, it takes 10 to 15 minutes. If someone is in pain, 15 minutes is a very long time. Who would want to be in labour for 15 minutes? It is a long, long time.

I am almost tempted to say, “Shall we put our hands up to show who in here has been through a hysteroscopy?”, but maybe it is not appropriate for me to say that. I think we all can understand what the experiences are like. Patient experience is significantly varied, so there will be patients who say they did not feel anything and there will be patients who have stories such as those of the people the hon. Member has spoken to.

The NHS does not collect data on the number of women who experience pain— surprise, surprise—during hysteroscopy. However, I am aware that the Campaign Against Painful Hysteroscopy estimates that between 5% and 25% of hysteroscopy patients have reported pain, and 25% is a considerable number. It is essential that women who are offered a hysteroscopy are given the information that they need to make that informed decision, which must include information about potential pain, options for pain management and alternative procedures that are available, such as a general anaesthetic.

I will address the points the hon. Member made regarding whether women are being offered appropriate pain relief and her concern that the national tariff—I completely agree with her here—creates an incentive for hysteroscopies to be carried out as an out-patient, without appropriate pain relief for those 25% of women. I will talk about three components to ensuring that women receive the care they deserve: evidence-based clinical guidelines, embedding the patient voice and monitoring implementation.

To minimise pain and promote best practice in hysteroscopy, it is essential that clinicians have access to guidelines. The Royal College of Obstetricians and Gynaecologists currently has a guideline, produced in 2011, which provides clinicians with evidence-based information regarding out-patient hysteroscopy. The guideline has an explicit focus on minimising pain and optimising the woman’s experience. It makes specific recommendations on practices that help to reduce pain.

I am told that the RCOG is now developing a second edition of those guidelines to ensure that the recommendations are based on the most up-to-date and robust evidence base. It is being developed jointly with the British Society for Gynaecological Endoscopy, and patient groups are represented on RCOG’s guidelines committee and the development group. Furthermore, a statement from the British Society for Gynaecological Endoscopy, which was published on RCOG’s website in 2018, also emphasises the importance of offering women from the outset the choice of having the procedure performed as a day-case procedure under general or regional anaesthetic as an alternative to an out-patient setting.

Alongside clinical guidance, I note the importance of patients’ voices, which are critical at every stage of the treatment pathway. Decisions on any treatment, including out-patient hysteroscopy with its benefits and risks, should always be discussed as part of the shared decision making between the clinician and patient. I understand that since the last parliamentary debate on this subject in December 2018, the NHS website, as the hon. Member noted, has been updated. I thank her for pointing it out and enabling that to happen. The website has been updated and RCOG has published a patient information leaflet regarding the procedure.

NHS England recommends that, as part of good practice, the Royal College of Obstetricians and Gynaecologists’ patient information leaflet, published in 2018, is provided to patients in advance, to assist with obtaining informed consent for the procedure. I imagine by that they mean that it is sent out with the appointment for the procedure or handed out at the clinic.

The patient information leaflet contains a lot of helpful information for patients. It explains what the procedure is and what is involved, what the patient should do beforehand and the questions they should ask health care professionals, the risks and alternatives, after-effects and what will happen following the procedure. The leaflet also recommends that patients take pain relief one to two hours before the procedure. After a hysteroscopy, I encourage any woman to read these valuable resources, along with the additional resources provided by their clinician. First, before the procedure, women must be able to speak to their doctor or nurse about what to expect and about pain relief options, including local or general anaesthetic, but, as we know and as the Cumberlege report has recently shown us, women’s voices are very often not listened to.

[Ms Brown]

I just point out that Rebecca turned up last week to an appointment, and there was no information. She did not even know that she was having a hysteroscopy. That was last week.

[Ms Dorries]

That is distressing to hear.

Women should also be advised that the procedure can be stopped at any time— but, although they are aware of that, that is an incredibly difficult decision to make. When we are in pain, we do not think rationally. It is important to put this on the record as women must be informed of their rights and have their voices heard. Finally, after the procedure, if the woman believes that there have been issues with the treatment that should be raised with the trust.

I want to talk about progress. NHS England advises that progress is being made through the implementation of clinical guidance. Within that, commissioners, and providers should advise service user feedback to be monitored to identify where the guidance is not being followed. As the hon. Member may be aware, women’s health is a personal priority of mine, and I have been looking at improving the experiences of women in the healthcare system since I arrived in the Department. As I recently set out in my statement to the House on the Independent Medicines and Medical Devices Safety Review, we cannot accept the status quo whereby it takes women so long to have their voices heard and for their concerns to be taken seriously. Whether we are talking about the Shipman or Paterson inquiries or the Cumberlege review or another maternity incident, it is sobering to reflect on the amount of inquiries that we have taking place that are about women-only issues. As I work with the team to evaluate every recommendation and every aspect of the Cumberlege review, I want to assure the hon. Member and the House that it remains an absolute priority of mine to tackle these issues.

I understand that the hon. Member has ongoing concerns with the best practice tariff. The aim of the best practice tariff is to encourage procedures in an out-patient setting where clinically appropriate. Out-patient procedures provide the patient with a quicker recovery, as well as allowing them to recuperate at home. I understand that NHS England and NHS Improvement will shortly be engaging with the sector on policy proposals for the 2021-22 national tariff. The tariff engagement document due for October publication will lay out NHS England and NHS Improvement’s initial proposals for the 2021-22 national tariff and will be followed by a statutory consultation. I understand, drawing on the momentum created by changes in the payments system this year due to covid-19, NHS England and NHS Improvement expect to propose an accelerated shift towards the use of a blended payment approach. This proposal would include the majority of services providing hysteroscopy. Blended payment would not differentiate between in-patient and out-patient procedures and, as such, the out-patient procedure’s best practice tariff would no longer be necessary. NHS England and NHS Improvement are currently planning to propose the removal of the best practice tariff from April 2021.

I hope the hon. Member will be pleased to hear this update, and I encourage her and patient groups to comment and contribute to NHS England and NHS Improvement’s proposals both in the tariff engagement document and the subsequent statutory consultation. I myself will be contributing to that consultation.

Once again, I thank the hon. Member for raising this important matter for discussion. She raised the issue of what was the women’s taskforce. I am not aware of any work that has taken place so far on hysteroscopies, but I will look into that. What I will say is that we have established something called the women’s health agenda, which has met this year. Sadly, it had to be stopped because of covid. We are already looking at restarting that agenda now and hysteroscopies will very definitely be on the table, as with all women’s procedures, when we are discussing the women’s health agenda. I really feel strongly that there is more we can do to ensure that we empower women to talk about their health, and I hope that we enjoy better outcomes as a result. Women are not listened to. They are not listened to in so many areas within health as a whole, and we have to change that. We have to ensure that a woman’s voice is heard throughout all the settings in the NHS.

Covid-19: BAME Communities

Baroness Brown of Silvertown Excerpts

Thursday 18th June 2020 Commons Chamber

[Ms Lyn Brown (West Ham) (Lab)]

I am grateful to my hon. Friend the Member for Brent Central (Dawn Butler) for giving us the opportunity to speak about this today. It is a pleasure to follow the sage, sad and passionate contribution from the hon. Member for Edinburgh West (Christine Jardine).

In Newham, we have statistically the second highest mortality rate from covid in the country. We have lost Ramesh Gunamal, who worked on the front desk at Forest Gate police station. We have lost Dr Louisa Rajakumari, who taught English at Kingsford Community School. We have lost Dr Yusuf Patel, a much missed GP from Forest Gate, and Abdul Karim Sheikh—sometimes a political opponent, mostly a friend, and a man always dedicated to the best for our communities. Those are just a few of the people who Newham and West Ham mourn deeply.

We know that deprivation doubles the risk from covid, and Newham is deprived—of that, there is no doubt. Like many of my friends’ areas, we have beautifully diverse communities, which means that they have been hurt massively by the pandemic. Those from our Bangladeshi community have twice the risk of death, and that is more than 12% of my constituents. Those from the Pakistani community have a 44% higher risk, which is 10% of us in Newham. Those from the Indian community have a 22% higher risk, which is 15% of us in Newham. Those from the black Caribbean and black African communities have a 10% and 6% higher risk, which is 4% and 11% of us in Newham.

Some 73% of us in Newham are from an ethnic minority, so we need this Government to act before we see a second wave. We need action so desperately that I have broken shielding to be here today so that I can demand it. The fact that I had to do so is wrong, but that is not nearly as wrong as the denial of equal protection for my constituents from this terrible virus.

I have written to the Minister for Women and Equalities, the Health Secretary and others about this twice. The first letter was sent more than six weeks ago. I do not think the urgency of my language could have been misunderstood. I wrote again two weeks ago, expressing, again, a desperate need for action. I have received absolutely no response of value. However, I was pleased to hear yesterday that there is finally going to be an urgent review of evidence and possible action on vitamin D deficiency. I hope we get that very, very soon, because if there is a second wave and we have constituents dying for the simple lack of a vitamin supplement, the Government know there will be a price to pay.

We know that it goes further than vitamin D. Staggeringly, despite the fact that black and minority ethnic communities are at greater risk of death, they are under-represented in clinical trials. Why? What possible excuse is there for that? In my humble opinion, it is incompetence, at the very best.

Let us look at the Government’s approach to covid-19 across this pandemic: it has been about slowing down its spread, which depends on two weeks’ full isolation. But in poor communities where there is no spare cash— there are no savings—excessive living costs have to be met week in, week out. Frankly, we all know that statutory sick pay just is not enough to keep people afloat, so sick people go to work. They put themselves at risk, they put the people on the tube with them at risk, they put the people who are on buses with them at risk, and they put their co-workers at risk, all because they are not paid enough money to enable them to stay at home like the rest of us can do, and recover. The Government have not even suspended the no recourse to public funds policy so that people can isolate. Why? Why do they not understand what these actions mean?

In Newham, many of us live in overcrowded homes—even my home feels a bit overcrowded at the moment with just me and my husband—which means that people at home cannot self-isolate. I accept that the Government are not going to be able to eliminate overcrowding overnight, but it would be great if they made a start. The fact that they cannot means that the other policies, such as track and trace, are really important. If we have a second wave, as I fear, and black and minority ethnic communities die in numbers out of all proportion again, we will be holding the Government to account for those excess deaths.