Crohn’s and Colitis Awareness Week

Hannah Bardell Excerpts

Tuesday 12th December 2023 Commons Chamber

[Hannah Bardell (Livingston) (SNP)]

I am incredibly grateful for the opportunity to hold this debate and for the flexibility shown by the Speaker’s Office in moving it when I was ill last week.

Last week was Crohn’s and Colitis Awareness Week, an opportunity to break the silence on inflammatory bowel disease and highlight the impact of these terrible conditions on people’s lives. I want to thank in particular: Crohn’s and Colitis UK, which has given us a huge amount of support; the hon. Member—my hon. Friend I would like to call her—for Chesham and Amersham (Sarah Green), who with me jointly recently reconvened the all-party parliamentary group on Crohn’s and colitis; and Alyson in my office, who supported me in writing today’s speech.

Over 500,000 people in the UK—one in every 123 people—live with Crohn’s disease or ulcerative colitis. These are debilitating, lifelong conditions that develop when the immune system attacks the gut. Tragically, there is currently no cure. Symptoms include urgent and frequent diarrhoea, rectal bleeding, pain, profound fatigue, anaemia, and inflammation of the joints, skin, liver and eyes. These conditions are widely misunderstood, with its invisible and stigmatised symptoms often leading to isolation, a lack of support and poor mental health. That is why this Crohn’s and Colitis Awareness Week we wanted to break the silence on inflammatory bowel disease, raising greater awareness of the conditions and helping those many people—many of them our constituents —living with them to speak more openly about the impact on their lives.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Lady. I was looking forward to her Adjournment debate last week. It is good to see her back in health and strength. Incontinence is a common symptom of Crohn’s and colitis, experienced by as many as three in four people with Crohn’s or colitis. Understandably, incontinence or the fear of experiencing incontinence can cause anxiety about leaving home, which can seriously affect work and social life. Does she agree that more work must be done with the Department for Work and Pensions to train personal independence payment assessors on the impacts of Crohn’s and colitis, to ensure that those suffering have the best possible chance of getting the benefits that they are entitled to?

[Hannah Bardell]

It almost seems as if the hon. Gentleman has read the next bit of my speech, because I was about to come to the point he has just made—and it is an extremely important and salient point. We do need to ensure that PIP assessors, and the whole framework, can take into consideration those with relapsing and remitting conditions such as Crohn’s and colitis.

I now want to share the experiences of some of those people with the House, because one of them is my brother. When he was diagnosed with ulcerative colitis just over nine years ago, he was in his late 20s and a new dad to a premature little girl. While we were cooing, and worrying a little, about this new bundle of joy—who is now a strapping nine-year-old—my brother was struggling, and had been for some time. I think that, in truth, he was terrified about how fatal the diagnosis might be. It was not until much later that it dawned on us all just what he had been through. When his diagnosis finally came, it was truly devastating. His life and that of our family were, for a period, turned upside down. An active and fit football lover, a new dad and an outgoing and often, frankly, a bit too cheeky young man was stopped in his tracks.

As a frontline police officer with big ambitions and talent, my brother had to adjust to a very different life, existence and career path. The pain, the fatigue and the various other symptoms that he, like many others, had experienced suddenly had a name. Apart from the initial period when he was off work to recover and adapt, his condition meant that, for instance, our annual camping holiday in the west highlands was suddenly in jeopardy. A four-hour drive when it could not be predicted whether toilets would be open or available was suddenly something that was potentially out of reach. My brother, however, being the resourceful problem-solver that he is, traded his car for a pick-up truck and popped a portable loo in the back, which meant that while he adjusted to his anxiety about being able to find a toilet when travelling, such things could be managed. I do not think he ever used the portable loo, but it was there just in case.

I believe that my brother would now count himself one of the lucky ones, and that, in fact, is just the point. For those who suffer from any kind of inflammatory bowel disease—and I acknowledge that people with endometriosis or conditions like cancer suffer very similar challenges—finding a loo that is working, stocked and clean is a perennial problem. Perhaps the Minister would like to meet me some time to discuss how we can develop better facilities—perhaps some kind of interactive map, in an app, of “loos that will do”.

My constituent Steven Sharp, to whom I pay tribute, is a brilliant young man from Fauldhouse. He is a Crohn’s sufferer, and he has raised thousands of pounds for charity over the years by, for instance, doing a bungee jump. He has often spoken to me about the joint pain, the fatigue and the unpredictability of the disease and its impact on his life. That unpredictability is one of the major challenges; the symptoms can change and be different every single day. Steven also lives with a stoma. He and I recently met the Prime Minister, and I have to say that the Prime Minister was incredibly supportive and kind to him. I hope that that kindness will be extended to provisions to ensure that those living with Crohn’s and colitis can obtain the support they need.

My friend Rachel Agnew, who I hope is watching the debate and with whom I spent time this summer, also talked to me about her many years of illness with Crohn’s disease and a possible misdiagnosis. Having had many major operations, she now has “Stan the stoma”, who can sometimes be cantankerous but has ultimately saved her life. Rachel recently had to give up a job that she loved, and is now having to navigate the complexities of the benefit system while having a relapsing and remitting disease.

Research commissioned by Crohn’s and Colitis UK has revealed that the scale of Crohn’s and colitis has been vastly underestimated, and that twice as many people as previously thought are living with the condition. In particular, as we know from recent debates and briefings, young children are being diagnosed earlier and earlier in their lives. I think that we need to pause and consider why that is happening. What are the environmental impacts? What are the impacts of over-processed food? I have no doubt that those elements play a part, and we need to fund research to enable us to get to the bottom of that.

[Sarah Green (Chesham and Amersham) (LD)]

I thank the hon. Lady for securing today’s Adjournment debate to raise awareness of Crohn’s and colitis. Symptoms such as abdominal pain, diarrhoea and fatigue are too often dismissed, especially when they come and go. A poll by Crohn’s and Colitis UK found that more than one in 10 people would put off speaking to a healthcare professional if they had diarrhoea with blood or mucus and stomach pain because they found it too embarrassing to speak to a healthcare professional about their symptoms. Does the hon. Lady agree that a public awareness campaign on lower gastrointestinal symptoms is needed to help people access reliable healthcare and advice and to take control of their health?

[Hannah Bardell]

The hon. Lady is absolutely right that we need greater awareness. People need to live without that stigma, and they must not be scared to talk about their poo. They need to be able to go to their doctor and discuss this openly, and their doctors need to be able to offer the right care.

Only one in four people are diagnosed before they are 30, thus affecting the most productive years of their lives. Crohn’s and colitis are complicated diseases that follow a relapsing and remitting disease course. We therefore need a benefits and social security system that supports people with these conditions. As the hon. Lady has said, it is also crucial that we raise awareness. People are waiting far too long for a diagnosis of Crohn’s or colitis. Even before the pandemic, one in four people waited a year to be diagnosed, with nearly half ending up in accident and emergency at least once before their diagnosis.

Delays to diagnosis affect people’s ability to continue education and work. They also narrow the treatment options while increasing the risk of being hospitalised. We do not want anybody to feel that they are a burden on the NHS, but there is a greater burden on the NHS when people are diagnosed later and are unable to access that care. Research found that only one in two people had ever heard of these conditions and that even fewer could name the symptoms. To make matters worse, people are not facing up to this, not understanding it, and putting it down to other things. You could say that it is time to talk more crap than we already do. If sufferers struggle to discuss incontinence with health professionals, it can have a profound impact, but these discussions are vital to ensure that people with Crohn’s and colitis receive the support and accommodations they need.

I would like to highlight the work of the SNP-led Scottish Government, who are committed to ensuring that those living with Crohn’s and colitis can access the best possible care and support, and access health services that are safe and effective and that put people at the centre of their care. For example, in March this year the Scottish Government launched an awareness campaign to help increase awareness of Crohn’s and colitis symptoms and to signpost reliable information so that people would feel empowered to seek help from a medical professional when needed. I would be delighted to hear the Minister say that the UK Government will do the same and that they will work across the UK and internationally with those who are leading in the field of research.

Bowel conditions are notoriously difficult to diagnose, so we must remind people that the symptoms of some of these conditions, including IBS, coeliac disease and bowel cancer, can be similar to those of Crohn’s or colitis. It is crucial that those with Crohn’s or colitis have these conversations and get a diagnosis as early as possible. If left untreated and poorly managed, these conditions can cause serious complications that require emergency medical or surgical intervention.

At a recent meeting of the all-party parliamentary group on Crohn’s and colitis, we heard from a sufferer who had had the most horrific experience during covid. She was taken by ambulance after terrible weight loss, and hearing her experience, particularly during covid, brought home to us how awful this can be and how difficult it is for young people, in particular, to face up to something that will be lifelong and debilitating.

Inflammatory bowel disease care is often overlooked and under-resourced. Current resource planning is based on outdated data on the number of people living with these conditions, which we know is twice as many as was previously estimated. One long-serving IBD clinical nurse specialist recently told us how, 18 years ago, her service was supporting 250 patients living with Crohn’s and colitis and is now supporting more than 7,000. That kind of increase is not realistic for our healthcare staff to deal with. Consequently, there is a significant variation in quality of care across the UK. No IBD service currently meets the IBD standards, so we need to work together to improve that.

The Scottish Government will continue to improve services for people with the conditions through modernising the patient pathways programme. It has a specific workstream that is continuing to promote improvements in inflammatory bowel disease care for patients across Scotland, in partnership with the third sector and people with lived experience. Additionally, the Scottish Government are funding gastroenterology specialty groups that lead on research into Crohn’s disease and ulcerative colitis, with a focus on a range of areas, including early diagnosis of these conditions.

We look forward to seeing the results of IBD UK’s benchmarking surveys, which are currently being undertaken. There will be data from over 15,000 patients and 63% of IBD services, and I hope the Government will take that into consideration and give it their very close attention.

As we have discussed, Crohn’s and colitis not only affect the gut; they can affect almost every part of the body and every aspect of life, from digestion, eyes and joints to energy. However, many people tell us that the hardest part of living with these conditions is the prejudice and discrimination that come from living with a hidden disability. The awareness cards that are now available from Crohn’s and Colitis UK and other charities do help, but we need awareness not only from people who suffer from Crohn’s and colitis, but from the public at large. When somebody who does not appear to have a physical impairment uses a disabled toilet, it does not mean that they do not need to use that toilet. Three in four people will experience bowel incontinence, and therefore quick access to a suitable toilet facility is crucial, either to prevent or to act should an accident occur.

[Carla Lockhart (Upper Bann) (DUP)]

The hon. Lady is making a powerful contribution. I believe the Government should undertake work on accessible toilets to help people who have Crohn’s and colitis. In my Upper Bann constituency, we have rolled out a fleet of accessible toilets. Does she agree that this should be mirrored throughout the United Kingdom, and that there should be more focus on the availability of Radar keys for disabled toilets?

[Hannah Bardell]

I congratulate the hon. Lady on the work that has been done in Upper Bann, and perhaps there are lessons that can be learned by all Governments across the UK. Incontinence can cause considerable anxiety. I often talk to my brother about what is worse now. Although a flare up can be seriously debilitating, the day-to-day anxiety never goes away and is always with those who suffer.

What is more, some Crohn’s and colitis sufferers have stoma bags, meaning that not only do they need to find a toilet, but they need to find one that has enough space for them to change and dispose of equipment comfortably, hygienically and in privacy. There was recently an excellent event in Parliament for International Men’s Day that talked about the need for sanitary bins in men’s toilets, which is incredibly important. Men often suffer from incontinence, and they certainly suffer from Crohn’s and colitis, so making sure that all toilets have such safe and sanitary facilities is crucial. I am not sure whether that would require an Act of Parliament, but it strikes me that it would have support across the House, because the fear of incontinence or being unable to locate a toilet can lead to a breakdown in mental wellbeing and social isolation through people choosing simply not to leave their home. We have all been there. We have all had a sickness, a bug or an upset tummy and either nearly not made it or not made it. Imagine that being your life every single day.

Many living with Crohn’s and colitis will understand, and I hope they will hear, these calls. A key thing we have heard about time and again is the social security system, because less than 3% of people living with Crohn’s and colitis are in receipt of personal independence payment. Four in five are denied the support they need. Words like “battling” and “fighting” are often used to describe the experience of those applying for PIP. I recently spoke to someone who talked about how degrading they felt the system is, and that was somebody who is chronically ill and often cannot leave the house. For them to be scared of going through a system that is supposed to be a safety net is utterly appalling, and I hope the Minister will hear that and talk more about how the social security system can support people with Crohn’s and colitis.

The current benefit system defines disability as a permanent and substantial impairment, or a long-term health condition that is likely to degenerate. Those I have given examples from, those we have taken evidence from and those who will be watching at home tonight—no one can tell me that their condition is not long term. There is little recognition of fluctuating health conditions, and fluctuating health conditions are not just Crohn’s and colitis. There are many other conditions, so we have to have a system that is designed to support all those people.

[Kirsten Oswald (East Renfrewshire) (SNP)]

My hon. Friend is making a powerful speech, and I hope that the Minister hears the points she is making. One thing that constituents consistently raise with me about Crohn’s and colitis is the impact of benefit assessors’ lack of awareness of the impact and fluctuating nature of the conditions, which my hon .Friend has been describing, and the need to end informal assessment in the personal independence payment process. Does she share their concerns about those points?

[Hannah Bardell]

I absolutely do. It is fortuitous that my hon. Friend raises that issue, because the statistics tell us that only one in two people score points under the toileting needs and continence descriptor, despite the severity of the symptom on everyday life. The fact that three in four people with Crohn’s and colitis will experience it just shows how profound the issue is.

I wish to highlight that the Scottish Government are reforming flexible disability assessment for fluctuating diseases. That is good news for people in Scotland, but what about people across the rest of the UK? The Scottish Government are consulting people with lived experiences on the mobility component of their adult disability payment. That includes researching the impact of moving around, planning and following journeys for those with fluctuating conditions. The adult disability payment differs from PIP, as it intends to get decisions right first time by trusting what people tell Social Security Scotland. Time and again, I have heard from people who have been through the assessment process for PIP and have been undermined and scared. I know people who have just not gone there, including some constituents who have come to see me; they do not want to go through the process, because they are so scared of it. We must move away from that. Treating people with dignity, fairness and respect is at the heart of delivering the adult disability payment.

I have highlighted just some of the impact that Crohn’s and colitis has on people’s lives. It is vital that we invest in developing a national primary care diagnostic pathway for lower gastrointestinal conditions, as my hon. Friend suggested, destigmatise IBD symptoms and create a benefits system that supports people with all types of disabilities. Just as the Crohn’s and Colitis UK campaign says, it is time to cut the crap and give greater awareness about IBD and those who suffer from this terrible life-limiting disease. We have an opportunity to do something really good: to give those who suffer from these terrible diseases an opportunity to take their full role in their communities and do jobs that they may otherwise be unable to do if they do not get that diagnosis and that support as early as possible.

I hope the Minister has heard what we have said, and heard the experiences of our constituents and those close to us. I look forward to his contribution.

National Carers Week

Hannah Bardell Excerpts

Thursday 8th June 2023 Commons Chamber

[John McDonnell (Hayes and Harlington) (Lab)]

I will try to get through my 10-minute speech as rapidly as I can, Madam Deputy Speaker.

I chair a group of unpaid carers, and have been doing so for the past 18 months. They are all Labour party supporters. It is a Labour carers group because we seek to influence our own party’s policy. It is not set up on a sectarian basis; it is just that that is the motivation for our coming together. I wish to report back on some of the issues that have been raised in our discussions, and they reflect much of what has been said already.

One key issue is ensuring that carers are properly recognised. Recognition should then lead to the assessments. The reports that we get are that it is almost impossible in some areas to secure an assessment. We have to be honest in this debate. I am not trying to be party political here, but this is, I am afraid, about the cutbacks in local government. Councils are not capable of undertaking the assessments themselves, because of the loss of staff over recent years. Unfortunately, lack of assessments means lack of access to services themselves. That lack of a passporting mechanism is causing incredible suffering.

Another issue is that, even where there are assessments, there is a real concern about the lack of fully trained staff in the range of specialisms to deal effectively with the people involved. What that means is that the assessments are sometimes crude—this is not a criticism of the staff—and do not reflect the reality of what is needed. Again, this comes back to the resourcing of both the local councils and the NHS.

The other issue is exactly as reflected in the debate so far, which is that unpaid carers are often living in absolute poverty. Many of them have given up their own careers to care. They do so willingly, because they want to care for their loved ones, but at the moment many of them cannot survive on the benefits that they are receiving. We are grateful for the meetings that we have had with my hon. Friend the Member for Leicester West (Liz Kendall). The request of many in the group is clear: they want a real living wage to reflect the care that they provide. In the short-term, a measure that could be introduced fairly rapidly is at least for the carer’s allowance to reflect other caring allowances, such as maternity leave. Benefits in the past have been linked to earnings, but, because of the break with earnings, some benefit levels have been undermined over the past 20 to 30 years. If this carer’s allowance had kept pace with earnings, it would be double what it is at the moment, which would be somewhere near to the levels of maternity leave payments.

The other issue that has come up in our discussions is the plight of external carers. There is almost a sympathy for them—or an empathy with them—from the unpaid carers. As has been said, carers who go into homes are underpaid, not recognised and often disrespected. We must acknowledge that care has largely been privatised, which means that many of the workers are on very insecure contracts. The result of what I can only regard as exploitation is that they cannot provide the care that is needed in many instances, or that they struggle to do so.

I will not dwell too much on the issue of respite, which has been covered. None the less, the lack of access to, and the withdrawal of, respite in many areas because of cutbacks is causing real concern. The Government could focus on that as a priority in the development of their initial strategy.

Another concern, which is heartrending to hear about, is from those carers who are elderly or getting on. They are worried about the succession planning of care for the children or the people whom they care for when they are no longer around.

[Hannah Bardell (Livingston) (SNP)]

Does the right hon. Gentleman agree that the Primodos case highlights the tragedy that our constituents face? I have constituents who have suffered at the hands of Primodos and they are genuinely concerned as they get into their elderly years about how they will be able to care for their children, while the Government remain intransigent and refuse to support them.

[John McDonnell]

I am glad that the hon. Member has raised that issue. I have constituents in the same situation, and that overhanging worry has come out in our conversations. People worry about what happens when they are no longer here, or are not capable of caring. Having some form of succession plan in place is critical.

Briefly, there is a demand from the group that I work with—I think this is felt across the political spectrum—for an independent living and national social care service. The argument is that this should be based on the NHS principles: free at the point of need and paid for directly through taxation. The proposals that I have heard so far, including those from the Fabian Society which were published today, are somewhat limited and do not live up to the challenge that we face. They are somewhat anaemic.

We must be honest with everybody about the scale of the costs involved and how that can be funded. I am happy to run through a whole range of taxation measures, but I shall just put on the table equalising capital gains tax with income tax, which, the TUC estimates, would provide £17 billion. That would cover the cost of introducing social care and independent living services. That requires political will and political courage, so there is the potential to go forward and form a cross-party alliance to secure a future for social care and support for unpaid carers.

I congratulate the hon. Member for Gosport (Dame Caroline Dinenage) on securing this debate. After the session yesterday where we met the different caring organisations, I would say that, if anyone wants any motivation, all they have to do is sit down with a few of those carers to realise how urgent and how desperate the situation is at the moment—and what willingness there is across this House to secure quite radical transformative change on the issue.

[Ben Lake (Ceredigion) (PC)]

Diolch yn fawr, Madam Deputy Speaker. It is a pleasure to follow the right hon. Member for Hayes and Harlington (John McDonnell). I echo what he said about how moving and inspiring it was to speak with unpaid carers yesterday in Parliament. I agree that even the briefest of conversations with an unpaid carer leaves us in no doubt about the urgency of the situation and the importance of ensuring better support for them.

I will keep my comments brief, as other hon. Members have already outlined the importance of this debate far more eloquently than I could, but there are two points I would like to impress upon the House. The first is that unpaid carers, as well as caring for their loved ones, make an incredible contribution to society, one that I think we need to value more. The second is the need for us to bring about a situation where they are given better financial and practical support.

Others have already mentioned the urgency of the situation, not least due to the rising cost of living and the financial pressures that that is imposing on many families and unpaid carers. In my own constituency, sadly, 72% will be off the mains gas network and reliant on heating oil, for example, to keep their homes warm. For those with caring responsibilities, it is essential that they are able to heat their homes, not just through the harshest of winter months, but through the shoulder months. They already have to pay a great deal more than some of their neighbours who do not have the same requirements and caring responsibilities.

[Hannah Bardell]

My hon. Friend spoke about the importance of local organisations. Will he join me in congratulating Carers of West Lothian, which celebrated its 30th anniversary this year? The group does incredible work in my constituency and truly is the backbone of our community.

[Ben Lake]

I am grateful to my hon. Friend for that intervention and I congratulate the group in question. In Ceredigion I know there are many charitable organisations that do great work supporting unpaid carers, as indeed do local authorities. My own county council does its very best to ensure that the unpaid carers it is aware of are given advice, support where possible, and resources so that they know of the various types of practical and financial support available to them.

Such initiatives are important; in a place such as Ceredigion it is estimated that more than 7,000 people are unpaid carers, equivalent to 10.5% of the population, and they make an incredible contribution. Other hon. Members have mentioned the value in financial terms of the contribution that unpaid carers make to the health and social care system. In Ceredigion alone, our unpaid carers make a contribution worth some £700 million a year. That is an incredible contribution and, to be frank, it ensures that local health and social systems do not collapse under the rising demands they face.

Nevertheless, as has been mentioned, some 73% of those who are caring or who have provided care in their lifetimes do not identify themselves as unpaid carers. That means it is difficult to understand truly how many are in need of support, whether financial support or respite and other practical measures. I very much support the calls of other hon. Members for measures that will force public authorities in particular to seek out and identify unpaid carers in the realms of both education and the NHS. If we do not know how many people living in our communities are unpaid carers, it is difficult to effectively plan for services such as respite and day centres. I know from speaking with unpaid carers in my constituency that those are vital lifelines, but lifelines that, sadly, are being cut back.

I will end my comments by dwelling a little bit on financial support for carers. We have heard about the ways in which the rising cost of living is having a serious impact on their finances and how many unpaid carers are deeply worried about their financial prospects. Just under half already say that they are cutting back on essentials. We also know that more and more unpaid carers are having to spend their own money and resources to procure essential items, such as incontinence pads and other equipment, for their loved ones. I think most hon. Members in this debate would agree that those types of supplies and equipment should be provided by the state and not something that carers should have to dip into their own savings and resources to buy.

I also want to point out the inadequacy of the carer’s allowance. One important thing we should bear in mind about the structure of that allowance is that the thresholds imposed mean that many people are not eligible for or entitled to the support, despite the fact that they give hours and hours of unpaid care every week. The right hon. Member for Hayes and Harlington also outlined the inadequacy of the current level of the payment itself.

In a poll conducted by YouGov earlier this year, some 84% of those asked thought that unpaid carers should receive additional financial support. There is clearly widespread public support for increasing the support given to unpaid carers. When we consider the £162 billion contribution that unpaid carers make every year just across England and Wales—£700 million in Ceredigion alone—it is high time we looked again at carer’s allowance and the direct financial support that they are given. They give so much to society; it is now time for society and the state to pay them back.

Oral Answers to Questions

Hannah Bardell Excerpts

Tuesday 1st November 2022 Commons Chamber

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

I thank my hon. Friend for his suggestion. We are committed to boosting the mental health workforce, and I am happy to meet him to discuss his suggestions.

[Hannah Bardell (Livingston) (SNP)]

My constituent Wilma Ord and her daughter Kirsteen are victims of the Primodos hormone pregnancy drug. Will the Minister update me on where the Government are in getting justice and compensation for the affected families? Many people have died. Will she meet me and other families and representatives from the campaign group to get justice for these families? They have waited far too long.

Women’s Health Strategy for England

Hannah Bardell Excerpts

Wednesday 20th July 2022 Commons Chamber

[Steve Barclay]

I thank my hon. Friend for her warm welcome. I agree with her about empowering patients, women in particular, with information. That is why part of the strategy is to focus on the information provided on the NHS website. There is also the need to work with trusted partners—to look at where people go for their health information, and how we can better empower them. For example, in the consultation, we heard of patients being told that heavy bleeding was normal—that it was something that they had to accept. Again, that was an issue highlighted by respondents in the call for evidence. It is about making sure people realise that, where there are issues, their voices are heard. That is at the heart of the strategy that we have set out.

[Hannah Bardell (Livingston) (SNP)]

I am delighted to see the UK Government follow in the footsteps of the Scottish Government with a women’s health plan. I am also pleased to see that they have taken on board the Stonewall campaign to bring the rest of the UK into line with Scotland on female same-sex couples’ access to in vitro fertilisation, because for far too long it has been a postcode lottery and lesbians have been discriminated against.

As co-chair, with the hon. Member for Kingston upon Hull West and Hessle (Emma Hardy), of the all-party parliamentary group on endometriosis, I am pleased to see the recommendations for more research and better care for those who suffer from that condition, but can we be certain that that will be backed up by proper support and funding? Women’s healthcare champions are fantastic, but they cannot replace proper funding and a proper strategy. I pay tribute to the work of Sir David Amess: I have no doubt that this strategy and the endometriosis aspects of it would not be there without the great work he did as chair of the all-party group.

[Steve Barclay]

I thank the hon. Lady in particular for that tribute to the work Sir David contributed to this, and agree with her on the issue of same-sex couples having access to IVF. She is right about better research and how we highlight that; that is a key part of the strategy. It is also interesting from the comments of the health ambassador that services can be reconfigured in a way that gives better outcomes for the patient without leading to higher cost. By having centres of excellence where the woman’s voice is heard, treatment comes more quickly and that delivers better patient outcomes.

Special Schools Eye Care Service

Hannah Bardell Excerpts

Wednesday 30th March 2022 Westminster Hall

[Hannah Bardell (in the Chair)]

I will shortly call Siobhain McDonagh to move the motion. I will then call the Minister to respond. There will not be an opportunity for the Member in charge to wind up, as is the convention for 30-minute debates. I call Siobhain McDonagh.

[Siobhain McDonagh (Mitcham and Morden) (Lab)]

I beg to move,

That this House has considered NHS Special Schools Eye Care Service.

I am delighted to lead a debate on a hugely beneficial development for the children who are often the most overlooked and yet most in need of targeted healthcare. The NHS special school eye care service has long been in the offing, originating from the stark statistic that children with learning disabilities are 28 times more likely to have a sight problem than other children. Four out of five children with a severe learning disability attend a special school, and decades-worth of studies and reports have all identified a higher level of sight problems in children attending day special schools.

I was first alerted to the issue when I visited my local special school, Perseid in Morden, in 2015. The school has an exceptional record of innovation, with a fantastic headteacher. I was delighted to learn that the Minister also knows the school from her recent visit to see the service in action. In 2013, Perseid began to work with the charity, SeeAbility, to offer sight tests and dispense glasses in the school environment.

A user-friendly report on what the children could see was part of the scheme for parents and teachers. Parents like Alyson told me on the visit that her daughter, Ellie, was getting used to eye care in the familiar environment of school and not having to take time out for hospital eye clinic appointments. That provided one less thing for her to worry about as a parent and had greatly reduced Ellie’s anxiety.

I was so impressed that seven years ago I initiated a debate and the Minister at the time, Alistair Burt, readily gave his time to visit the project and see the benefits for himself. The Department of Health and Social Care then granted innovation funding for the SeeAbility project to expand in other day special schools and report on its findings. As well as finding a huge level of vision problems and a need for glasses in particular, it found that children were not accessing their right to an NHS sight test in the community. Only one in 10 children has ever had an NHS sight test, and over four in 10 have no history of eye care.

NHS England has a responsibility to ensure equitable access to sight tests and primary eyecare, but there was a clear picture of unmet need. Moreover, it was clear that where services were targeted, it was only down to motivated eyecare professionals filling a gap, usually through secondary care. The project found that almost half of the children had accessed or were under the care of a hospital eye clinic, but often for routine eye care such as a sight test.

Fast forward to 2018 and, to its huge credit, NHS England accepted that it lacked a strategic approach to targeting much needed NHS sight tests and to improving primary eye care for people with learning disabilities. It began working collaboratively with eye care professional bodies and learning disability charities, first on a proposal for an NHS special school eye care service with the potential to reach 130,000 children, but also on longer-term plans to improve community optical practice access, too—pathways for the children not at special schools and adults with learning disabilities. They exist in only a few areas of the country.

The new NHS special school eye care service model does not exist anywhere else in the country, because it provides a one-stop shop for multidisciplinary eye care through full NHS sight testing, glasses dispensing, and specialist lenses and testing kits, alongside the report on a child’s vision and liaison with hospital eye clinics and teaching staff. It is important to put on the record that clinical backing for the service has come from all of the eyecare professional bodies and colleges, and from Public Health England.

In 2019, I was pleased to attend an event at Perseid, with NHS England in attendance, to celebrate its commitment, which was signed off at a senior level earlier that year. The service has therefore been promoted as a long-term proposition. Although the pandemic knocked everyone off course, I understand funding proper began in April 2021. We are in the early days as the service is in its proof of concept phase, although it is important to put on the record that the pilot is not about the need for a service. That is beyond doubt. It is a phase that will help evaluate an appropriate fee and glasses dispensing service, and therefore the best way to operationalise nationally. The service is now up and running in 97 special schools, 91 of which are day schools, with a total pupil population of more than 12,000. Clinicians from Bradford to London, Cheshire to Durham, are also under contract to deliver the service.

Some of the new NHS teams have only just begun their work, but the early picture is of much unmet need, with many children not having had a sight test before and with a high need for glasses. So far, so good, but some ambiguity has crept in recently, which is the reason for calling today’s debate. Back in 2019, wording in “The NHS Long Term Plan” specified that dental, hearing and sight checks would be delivered in residential special schools, but that was in addition to a wider pledge in the same plan to improve access to eye care for children with learning disabilities. However, it now appears that NHS England is promoting the need to establish the service in residential special schools, and recruitment has stopped for new day special schools.

Anxieties are building about whether the long-term intention is to limit the service to a few thousand children in residential special schools only, despite all the important work done so far, and about what that ambiguity means for day special schools where there is now a new NHS service—for schools such as Perseid and children such as Ellie. There is talk of evaluation, but does that raise the prospect of a halt in day special school services, which have only just got off the ground, and for how long will we have to wait for evaluation?

As I have outlined, there is no doubt about the need for reform. That much is sure. I am sure that it cannot be the intention to send children who are now being seen by a service, some of whom have already been discharged to it by hospital eye clinics, back into hospital eye clinics, particularly as there is a separate NHS programme that is actively trying to reduce out-patient eye clinic use. I remind the House that one study found that 54% of children with disabilities do not attend their eye clinic appointments because of the difficulties they have—something that a special school service does not experience, as children who miss a visiting clinic one day can be seen quickly at the next and their place taken by another child who has been waiting to be seen.

Tens of thousands more children with severe learning disabilities attend day special schools than attend residential schools, and the residential school population is decreasing, with no residential special schools at all in some areas. How will a focus on residential special schools address the bigger picture of a huge cohort of children, young people and adults with learning disabilities missing out on the NHS eye care they need? Paring back a service to a much smaller number of schools—if that is the plan—misses the bigger picture of unaddressed health inequalities and leaves unreformed the NHS sight testing scheme for patients with a severe learning disability seen in optical practices or day special schools.

It has already been wonderful to read of the Minister’s recognition of the potential for the service and the work of Perseid School. I know that she already recognises the folly of sending children with learning disabilities into out-patient eye clinics for sight tests, as they are some of the busiest places, with the longest waits for appointments. Only yesterday we saw the publication of the Government’s ambitions for the special educational needs system. If anything, this is a programme of work that delivers outcomes for SEND children on so many levels. Let us get the Department for Education on board, too. It already recognises the need for glasses in mainstream schools through its “Glasses in Classes” initiative.

I conclude with a quote from a new school, Kingsley special school, which has just started with the service. Reshma Hirani, assistant head, says:

“This service should be part of the NHS core offer so that it never stops. My pupils have struggled to access eye care in the community and now they have, quite rightly, something that is going to transform their lives. Well done NHS England for thinking about schools like Kingsley and our children. As a Qualified Teacher of Children and Young People with Vision Impairment I can now put in the support that children need, with the confidence that I have all the right information to hand. It really is the gift of sight.”

I finish by asking the Minister to reassure me today that the Department of Health and Social Care and NHS England will publicly reaffirm the commitment to the special school eye care service and push on with the job of establishing it. Ongoing evaluation can still happen to understand how to fully operationalise, while ensuring that children get the service. These children deserve an equal right to sight.

Cumberlege Report

Hannah Bardell Excerpts

Thursday 3rd February 2022 Westminster Hall

[Alec Shelbrooke]

That is where we have to dig into recommendation 4:

“Separate schemes should be set up for each intervention—HPTs, valproate and pelvic mesh—to meet the cost of providing additional care and support to those who have experienced avoidable harm and are eligible to claim”.

The Government do not accept recommendation 4. That is exactly the same situation as with thalidomide. One of my earliest campaigns in 2012 was to extend the grant to victims, and my hon. Friend the Member for North Dorset (Simon Hoare) took that campaign further to make it a permanent grant. People will not recover from what happened, whether it was drug-induced or operation-induced.

My constituent who has had mesh removed emailed me only today to say that four years down the line things are better, but they have not improved to the point where she can really live her life. She says she is mentally exhausted and does not want to go on. She had a thriving physiotherapy career that she cannot go back to. She is only in her 40s and has the rest of her life to live. The Government have a responsibility because the Government run the NHS. I interchange the words “NHS” and “Government”, but the NHS is the Government. That is where this situation falls on the Minister:

“While the Government are sympathetic to the experiences of those patients who gave evidence to the report, our priority is to improve the future safety of medicines and medical devices.”—[Official Report, 21 July 2021; Vol. 699, c. 72WS.]

Trying to prevent further catastrophe is obviously very important—that is one thing—but thousands of people will suffer for the rest of their lives thanks to this treatment.

I will draw the distinction between this surgery and breast-enhancement surgery. Many people have had that done privately and then when there have been complications, they have had the operation to sort it out on the NHS. There is often a lot of debate around whether that is right or wrong. That is not where I want to go today. However, if we are willing to do that for things that people have had done privately, why are we not willing to redress the issues of people who have had things done by the NHS?

We are talking about women from their teens all the way up. Some people think the problem is with the elderly end of the population, but we are talking about those in their teens upwards. As I said, we did recognise the situation with thalidomide. I know that costs come into it, but there is a moral responsibility to redress the situation.

[Hannah Bardell (Livingston) (SNP)]

The right hon. Gentleman is making a powerful speech. Does he agree that there is a moral responsibility? Once the Government—whatever Government that is and wherever they are—have committed to review such a profound issue, and have essentially marched people up to the top of the hill, giving them faith and hope, they must then follow through. Leaving people in a state of suspended animation for such a long time, when they have already suffered so much, is just not acceptable.

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[Hannah Bardell (Livingston) (SNP)]

It is a pleasure to serve under your chairmanship, Sir Graham, and to follow the right hon. Member for Romsey and Southampton North (Caroline Nokes). She summed up so well the concerns and the frustration that so many of us have. I pay tribute to my right hon. Friend the Member for Elmet and Rothwell (Alec Shelbrooke)—I call him that because we have worked so closely on so many of these issues. He spoke with such passion and in such detail about all these issues: about the impact on women and their families from mesh, from sodium valproate and from Primodos, which is what I will focus on while summing up the debate on behalf of the SNP.

My constituent Wilma Ord and her daughter Kirsteen were the very first constituents who came to see me after I was elected in 2015. I cannot believe that I am standing here today, alongside colleagues who were elected at various times, having challenged the Government and asked for action in 2015, in 2016, in 2017, and so on and so forth; for my part, I have been challenging them through three elections now.

As I said earlier, we have marched campaigners and victims to the top of the hill and put them through the trauma and frustration of the expert working group, which the right hon. Member for Hemel Hempstead (Sir Mike Penning) so poignantly discussed. I remember going over the road to the conference centre with the hon. Member for Bolton South East (Yasmin Qureshi) to challenge the expert working group, which was essentially a whitewash and a big fat waste of public money.

We do not want the incredible work of Baroness Cumberlege to be another waste of public money, and it is clear that it is not. All her recommendations are so important. An article in The BMJ in 2020 highlighted that the Cumberlege review exposed

“stubborn and dangerous flaws in healthcare”

and a healthcare system that is

“disjointed, siloed, unresponsive, and defensive.”

We must recognise the incredible work that the NHS does, but where there are flaws and where harm has been done, that must be fixed. Some things have struck me in particular about culture and harm, the litigious nature that I think has developed within some elements of the Government, and the unwillingness just to accept when wrong has been done and to see the human cost of it. The human cost to my constituent Wilma Ord and her daughter Kirsteen is just incredible, as it is to campaigners such as Marie Lyon, who has been campaigning for 40 years. She has spent four decades dedicating her life to the campaign, but she has not seen any progress other than these reviews and reports. Those are very important, but she has not seen justice and she has not seen change.

Members from across the House have mentioned the Government’s statement that there is no need for a redress agency because they have the levers and the tools. This is somewhat of a tangent, and we know that such cases are very rare, but a constituent came to me recently about the impact on them of one of the covid vaccinations. I commend the Government for putting in place redress for those who have been impacted, but I found out recently from answers to my written questions that that system has not yet paid out anything to anybody. That is proof that while there may be good ideas, they are not being followed through. A redress agency is crucial to ensuring that we make improvements and that our constituents’ lives are not damaged and dogged by such profound issues.

My constituent Wilma Ord’s medical records have a gap between 27 November 1968 and 27 January 1971, but we know that she was pregnant because she gave birth to a baby, Kirsteen, who was born with cerebral palsy and suffers from deafness. Wilma is not alone among woman who were pregnant at the time in having suspiciously missing GP records. That is a mystery that many women have had to face, and I have seen written evidence to prove it. A document dated 13 March 1964 clearly states that GPs who were worried about adverse reactions would be best to destroy any evidence of records to protect themselves, and I quote, “however wrong” that may be. Schering, the drug company that is now Bayer, sought legal advice way back when it was told it would more than likely be found guilty of negligence by a trial judge.

Marie Lyon and others have had access to these documents, as has Baroness Cumberlege, who recommended that the families who suffered avoidable harm ought to be given redress because there is a strong ethical responsibility to do so. We have heard time and again from Members across the political spectrum how important that redress is. It is surely the first and last duty of a Government to look after their citizens and, where harm has been done, to find redress and do everything in their power to make sure that harm is not done in future.

My constituent Wilma Ord has often said to me that someone who did this or has the power to affect change should walk a day in her shoes, feeling and seeing what it is like for her daughter to be unable to live a normal life. She has had a job but was bullied for being different, and no efforts were made to accommodate her deafness. I would like to think that the world and our society has moved on significantly, but Wilma feels very strongly and has expressed to me directly that it was her fault. It is important that we send a clear message today to all the victims of sodium valproate, mesh and Primodos that it was not their fault and that they are not responsible.

The right hon. Member for Maidenhead (Mrs May) spoke about the culture that still exists within healthcare today. It discriminates against women and makes them feel as if they are imagining things. It is literally gaslighting them. The wait for redress has gone on far too long. Members have spoken so passionately today, but how often are we going to have to debate these issues over and over again before the Government simply accept the recommendations and put them in place?

Mention has been made of the legislation passed in Scotland. The hon. Member for Chesham and Amersham (Sarah Green) did not feel that it had gone quite far enough, but I hope that it has gone some way to redress. We have appointed a patient safety commissioner. We are also quite well on with our women’s health plan. I say this not to in any way bash the UK Government; we are doing very similar work. We might be a bit further ahead, but I hope that our Government and the UK Government can work together on this, because I think many learnings can be shared.

Members have said that it is not the Minister’s fault—that she is just doing her duty in delivering the lines of Government—but please listen to us. Please listen to our constituents’ concerns. Do not make them wait for more decades. Let us try to draw a line under a culture that puts the desires and views of lawyers before people’s lives. That is what we are talking about. My constituent and other victims of Primodos were used as human guinea pigs. That is not acceptable. We need to send them the strong message that we stand with them, but we need every Government across the UK to do everything they can to see redress and to see the Cumberlege report implemented in full, so that victims can be at peace and have the redress that they deserve.

--- Later in debate ---

[Maria Caulfield]

Valproate should not be being used on women or girls able to have children, unless they have a pregnancy prevention programme in place. That is to ensure that patients are fully aware, if they need to take sodium valproate, of the effect on any potential pregnancy. The NHS also commissioned the paediatric neurosciences clinical reference group to support the development of pathways for care services, specifically to improve patient support and co-ordination on the pathway for sodium valproate.

Mechanisms are therefore being set up for those women and girls who need to take sodium valproate. I think my right hon. Friend the Member for Romsey and Southampton North (Caroline Nokes) pointed out that, in other settings, a huge amount of work is done to ensure that those women do not get pregnant. Also, a multidisciplinary expert group with experience in responding to exposure has been established. It will report its recommendations to NHS England in March this year. We will follow up on those recommendations, but a piece of work is being done specifically on sodium valproate, which will help to prevent such problems in the future.

Recommendation 6 was on MHRA reform. The review highlighted the need for the regulatory agency to undergo substantial revision, in particular on adverse event reporting and patient engagement. As many Members said, instances were flagged many times by many different people—the women themselves, MPs in this place, charities and other bodies—but people did not listen, although the MHRA has a duty to do so.

The MHRA has now initiated a substantial programme of work to improve how it listens and responds to patients and the public, developing a much more responsive system for adverse event reporting and supporting timely and robust decisions involving patient safety. It has been consulting on a new regime for medical devices that makes patient safety, engagement and transparency more prominent.

To strengthen its commitment to patient engagement, the MHRA recently established an enhanced customer service centre to make it easier for patients to express concerns, whether about medicine or devices that are being used. The MHRA has also appointed a chief safety officer, Dr Alison Cave, who will lead its ongoing commitment to the recommendations.

On setting up a database to collect details of all implantations of devices, which is recommendation 7, we have already legislated for that through the Medicines and Medical Devices Act 2021. The Act created a power for the Secretary of State to regulate for the establishment of a UK-wide medical device information system. Alongside developing those regulations, more than £11 million has been set aside for the work, involving partners across the healthcare system to scope, test and cost options for that workstream.

On transparency for payments, which I think was raised by the hon. Member for Chesham and Amersham (Sarah Green), who spoke about the conflicts of interest between doctors and pharmaceutical companies or providers of surgical mesh, recommendation 8a highlights the need for greater transparency for payments made to doctors. The recommendation calls for a register of doctors’ interests and for recognised and accredited specialisms to be held by the General Medical Council.

As the Government set out in our response to the review, we agree that lists of doctors’ interests should be publicly available. We continue to hold the view that that information will be most accessible to patients if it is published by healthcare providers rather than by the GMC. We are taking that measure forward and it should be in place by July this year.

We are also working with professional healthcare regulators to be clear that all regulated health professionals—not just doctors—must declare their interests, and that that information must be published by their employers. That approach will give not just women but all patients the reassurance that there are no interests involved in clinical decisions made about their care. We are working with the Care Quality Commission and equivalent organisations, and with the devolved Administrations, to ensure that implementation is monitored and that there is local accountability.

Recommendation 8b touches on the mandatory reporting of the industry. It calls for the pharmaceutical and medical devices industries to establish payments made to teaching hospitals, research institutions and individual clinicians. On 24 January this year—just a few days ago—an amendment to the Health and Care Bill was tabled to give the Government the power to deliver on that important recommendation. That legislation will, I hope, come into law fairly soon. The amendment will enable the Secretary of State to make regulations requiring companies to report information about their payments to the healthcare sector. That measure will benefit patients, who will see payments made to their doctors or hospitals, and it will build on proactive initiatives by healthcare regulators and the industry.

I very much take on board Members’ feeling that it took too long to acknowledge the problems that those women have faced, whether because of mesh implants, sodium valproate or Primodos. Although this may not be of any reassurance for women who have already been affected, we now have measures in place to flag problems in the system. For maternity care and clinical negligence, for example, we have an early notification system so patterns of events around neonatal care and foetal abnormalities are picked up at an earlier stage, to get on top of the causes quickly. We are seeing improvements in maternal and neonatal outcomes as a result of that early warning notification system

We very much recognise that such problems did happen in the past, but measures are being put in place to make sure that they do not happen in the future. I certainly want to make sure that the women affected are getting the care and support that they need. I very much take on board the points raised by hon. Members. I am very happy to keep Members updated on progress. I meet Baroness Cumberlege regularly to address the issues raised in her report.

I reassure colleagues that many of these issues will feature in the women’s health strategy, which we will publish shortly. The women’s health ambassador, the patient safety commissioner and I will be working hand in glove to make sure that women’s voices are heard in relation to their healthcare, and that we end the pattern of women feeling that they are not being listened to, that they are palmed off, and that their concerns are not taken seriously.

[Hannah Bardell]

Does the Minister recognise that this is not only about compensation, but about exposing the failures so that they never happen again? Eighteen members of the Primodos support group have died in the past two years. That gives an idea of just how long people have waited. They should not have to wait any longer. Those who have died will never see justice.

[Maria Caulfield]

I absolutely take that point—that is the crux of the matter. For too long in the health service, there was no duty of candour. The health service did not acknowledge when mistakes were made. That is changing; there is now a duty to declare when a mistake has happened. There is also support for staff. I cannot remember who mentioned the whistleblower on Primodos, but there is protection for whistleblowers now. There are freedom to speak up guardians to support whistleblowers in the workplace, and the Care Quality Commission is happy to take notification from patients and staff if there are worries about unsafe patient care. That will trigger an unannounced inspection to look at the data. It is all about creating a culture of learning in the NHS, rather than one of blame that pits patients against clinicians—that is what we want to change. That is how we learn from the mistakes of the past and prevent mistakes in the future.

Covid-19 Update

Hannah Bardell Excerpts

Wednesday 8th December 2021 Commons Chamber

[Sajid Javid]

I understand the importance of my hon. Friend’s point. First, we all know that in South Africa, where we believe this variant originated, we are seeing significant hospitalisations of people with the new variant, and they have been doubling on a weekly basis. Also, we know from the history of viruses, and particularly with this pandemic, that there is a lag—sometimes a significant lag—between infection and hospitalisation. It takes time for the virus to incubate and, sadly, in some people that might lead to serious disease, which might mean hospitalisation. It is worth noting that the UK had its very first case of covid-19 back in January 2019 but it was not until, I think, two months later that we experienced the first death.

[Hannah Bardell (Livingston) (SNP)]

As an inactivated whole virus candidate, the Valneva vaccine being developed in my Livingston constituency could well have advantages over other vaccines when it comes to the emerging omicron virus. Will the Secretary of State reconsider his disastrous decision to deny the people of these islands a vaccine that may well tackle the further pandemic? The EU can see its value, as it has bought 60 million doses.

[Sajid Javid]

The hon. Lady may know that, in making decisions on vaccines, the UK Government take advice from both the vaccine taskforce and the experts on the Joint Committee on Vaccination and Immunisation, and I know that they keep all potential vaccine options under review.

Medical Cannabis under Prescription: Children with Epilepsy

Hannah Bardell Excerpts

Wednesday 3rd November 2021 Westminster Hall

[Hannah Bardell (in the Chair)]

Before we begin, I remind Members that they are expected to wear face coverings, given the recent outbreak of covid-19 in Parliament. I expect all Members to be wearing masks if they are not speaking; if there are Members without a mask, masks can be found to my right, on top of the cupboard. This is in line with current Government guidance and that of the House of Commons Commission. I also remind Members that they are asked by the House to have a covid lateral flow test twice a week if coming on to the parliamentary estate. This can be done either at the testing centre in the House or at home. Please also give Members adequate space when seated, and when entering and leaving the room.

Members will be aware that we have been delayed as a result of two votes, so this debate is due to end at 5.56 pm.

--- Later in debate ---

[Alberto Costa]

I think it is imperative that we work cross party and we encourage, cajole and push the Government to do the right thing. The right thing is what? While acknowledging that the Ministers have these powers, I understand that there are concerns about whether such action might lead to unintended consequences in the form of legal challenge relating to other drugs. I am a lawyer; I understand that. I used to work in government and defend the Government from judicial review. I understand.

However, I believe that any such concerns and risks could be mitigated. I also suggest in the meantime that the Government use the discretionary fund that they have at their disposal to cover the cost of the private prescriptions. There are a small number of children and families across the country in this desperate financial situation. The Government can intervene financially to reduce the burden every month, so that families such as my constituents Maya and Evelina do not have to rely on the uncertainty of fundraising. That is my favoured option, and I urge my hon. Friend the Minister to access that fund.

During the pandemic, Maya had to be rushed to A&E a few times due to her condition. Surely these children needing to go to hospital to have urgent medical treatment is more costly to the NHS than providing them with the prescription they need. Therefore, I suggest, only as an interim measure—I plead—that the Government consider covering the costs of the private prescriptions for the most vulnerable children in our country suffering from severe epilepsy who need this medication, until the Government find a solution with the bodies and particularly the medical profession.

In conclusion, I urge my colleagues in Government to consider the recommendations that I and other colleagues across the House have made and are making here today, as well as listening to the families affected. While I appreciate the good work that the Government have done on this issue, they can and should go further. I and many colleagues across the House will continue to champion this matter: better access to medicinal cannabis on the NHS for my constituents, all the constituents affected across our country and all the children suffering from this awful illness, so that they get the drugs necessary, free at the point of need on the NHS.

[Hannah Bardell (in the Chair)]

Before I call speakers, I want to acknowledge those who are with us in the Chamber today and those who are watching. I also acknowledge the importance of this subject. Because it is such an important subject and I want to call the Front Bench by 5.34 pm, with the Labour and Scottish National party spokespersons having five minutes each, I will impose an initial time limit of four minutes to ensure that every Member has the opportunity to represent this very important issue.

--- Later in debate ---

[Liz Kendall (Leicester West) (Lab)]

It is a pleasure to serve under your chairmanship, Ms Bardell. I congratulate the hon. Member for South Leicestershire (Alberto Costa) on securing this important debate. We have worked together over many years on health issues, and he has done very important work alongside my hon. Friend the Member for Gower (Tonia Antoniazzi) through the all-party parliamentary group on medical cannabis under prescription.

I start by saying to those who have spoken in the debate and those watching elsewhere that I cannot begin to imagine how difficult it must be to be the parent of a child with serious epilepsy. The fear that they go through every day, and the difficulties that they experience, must be beyond terrifying. I also recognise the huge financial burdens that many parents face, and the anxiety of parents who want access to these prescriptions, but are still denied it.

As the hon. Member for South Leicestershire said, it has been three years since the then Home Secretary, now Health Secretary, changed the law on this very important issue. As we all know, that change came about after a number of very high-profile campaigns in utterly heartbreaking cases of children suffering from epilepsy, including Billy Caldwell and Alfie Dingley. I pay tribute to the families who campaigned relentlessly on these issues. It gave hope to people that things would change. Yet three years later, we do not seem to be very much further forward. As the hon. Member for South Leicestershire said, the law has changed, but the practice has not.

I will focus on three things that need to happen to put this right. The first, which many hon. Members have spoken about, is the desperate need for more research and evidence. One of the barriers to clinicians prescribing is that they feel they lack knowledge, or are not really sure about the evidence on both the benefits and the risks. That point has been made time and again over the last three years. It was made during the original review, back in 2018, particularly by the Advisory Council on the Misuse of Drugs. It was repeated by the Health and Social Care Committee in its review of why things had not changed, back in 2019. Six of its 11 recommendations were about providing more research and evidence. Indeed, that was called for by the then chief scientific adviser, now chief medical officer, Professor Chris Whitty, and in the NHS England review commissioned by the last Health Secretary, the right hon. Member for West Suffolk (Matt Hancock).

I hope that the Minister will say where we have got to on that issue, and particularly on the point about more research and evidence from clinical trials being needed. However, that last point absolutely cannot mean taking children off these products if they are on them; that would be completely wrong. How will she make progress on all those issues?

Secondly, what other steps are being taken to improve access? I will focus briefly on three of the 10 recommendations made by NHS England. One was that the national medical director and chief pharmaceutical officer for England should write to doctors and pharmacists, reminding them of the guidance on prescribing, how they can access a cannabis education package produced by Health Education England, and how to get the message out about what can happen at present. NHS England also recommended much clearer information for patients, and that a specialist clinical network be established, so that everybody is aware of the real evidence. Could the Minister comment on what further action the Government have taken on that?

Finally, a really difficult but important point: as we move forward with the research and evidence, and as we try to improve understanding among all professionals—GPs as well as specialists, because we can have a partnership approach—what will we do to support those parents who are paying such huge amounts of money? Have the Government considered what support might be made available to them?

Changing the law is essential, but getting that to work in practice—changing hearts and minds, as well as the law—is the only way we will make progress. I thank all right hon. and hon. Members who have spoken. I hope that the parents out there listening know that they have champions in this place, and that we will carry on doing our best to make sure we get the best results for their children.

[Hannah Bardell (in the Chair)]

Before I call the Minister, I say gently and kindly to her that I would expect her to finish by 5.44 pm, so that I may call the hon. Member for South Leicestershire (Alberto Costa) to sum up for two minutes.

Endometriosis and Polycystic Ovary Syndrome

Hannah Bardell Excerpts

Monday 1st November 2021 Westminster Hall

[Hannah Bardell (Livingston) (SNP)]

It is a pleasure and an honour to speak in this debate. As Members before me have done, I pay huge tribute to and give thanks for the work of Sir David Amess. He worked tirelessly to raise awareness and improve services for those affected by endometriosis. His loss is felt keenly across the House and among those involved in the causes that he fought so hard for, such as endometriosis. It will be a true honour and a privilege to follow in his footsteps with the hon. Member for Kingston upon Hull West and Hessle (Emma Hardy). We decided that it was important to make a cross-party effort to take on Sir David’s role, because that was the spirit in which he approached the issue. In fact, the last conversation I ever had with him was about how we could ensure that the report did not sit and gather dust, and how we could include and encourage local groups in our constituencies. I know we all have many of them in our constituencies.

I want to take a moment to mention and pay tribute to Endo Warriors in West Lothian, where Candice and Claire are tireless campaigners—that is why the fourth largest number of signatures to this petition came from my constituency. I also pay tribute to Endo Bonds, which works tirelessly across Scotland, and to Andrew Horne and Emma Cox at Endometriosis UK. There are many people in this space and a lot of sufferers, many of whom I have met. When we did that report, I took evidence from sufferers in Scotland. The stories were truly heartbreaking. That was in the middle of the pandemic, when those who suffer from endometriosis were having to wait longer than ever to get treatment and diagnosis. The number of Members who have taken an interest and want to speak in this debate shows that so much more time, effort, money and research must be dedicated to both endometriosis and PCOS, which devastates and blights the lives of women and sufferers across the UK.

As we know, endometriosis is a gynaecological condition, but many do not know that it is as common as diabetes. It affects one in 10 women and those assigned female at birth, thus affecting millions across the UK. It is a condition with a wide spectrum of symptoms. I have friends who suffer from it, and it has such a profound impact on their lives. As other hon. Members have said, the response of some medical professionals simply needs to change. We need ongoing medical intervention and research to improve sufferers’ lives.

From an economic perspective, endometriosis costs the UK £8.2 billion per year through treatment, healthcare costs and the impact on work and employment. This is not necessarily about the financial impact, however; it is about the impact on the lives of those who suffer. Despite the prevalence and impact of endometriosis, there is very little research funding for it or widespread awareness about it, unlike with cancer or diabetes. Yet it is ranked by the NHS as one of the top 20 conditions involving pain so disabling that it can prevent sufferers from doing daily tasks. That list includes well-researched and well-funded conditions such as heart attacks, kidney stones, appendicitis and arthritis, to name a few.

Men have held positions of power for centuries and, as the hon. Member for Thurrock (Jackie Doyle-Price) said, if the sufferers were men, we would probably have a solution and a cure by now. The fact that Sir David was so determined to fight, in such an inclusive way, for the women who suffer from the condition is a reminder to us all of the need to take that work forward.

In 2018, only 2.1% of publicly funded research in the UK went on reproductive and menstrual health, down from 4.5% in 2014. In Scotland, we have committed to reducing the time taken to obtain a diagnosis from eight and a half years to 12 months during the life of the next Parliament—that is an ambitious target. So often, the nations of the UK are played off against each other. Of course, this is an area where we should compete, but we also need to work together so that we can share ideas, fresh thinking and opportunities. That is what the hon. Member for Kingston upon Hull West and Hessle and I will do in the all-party parliamentary group. We look forward to working with Members and having many more debates on endometriosis and PCOS so that sufferers do not continue to suffer, as they have done for so long.

[David Mundell (in the Chair)]

We really need to stick to the time if everyone is to have an opportunity to speak. I call Robert Largan.

--- Later in debate ---

[Kirsten Oswald (East Renfrewshire) (SNP)]

It is a pleasure to serve under your chairship, Mr Mundell. I am grateful to the hon. Member for Coventry North West (Taiwo Owatemi) for leading this important debate so powerfully, and to all the women—so many women—who signed the petition, including the 241 in my constituency of East Renfrewshire.

Endometriosis and polycystic ovary syndrome affect so many women, yet we hear so little about these conditions day to day, so this debate is really important, because it allows us to focus on areas such as research, where I will be seeking assurances from the Minister. It is really important, too, that this afternoon we are shining a light on these conditions and helping a bit by letting people know about the reality and the challenges of daily life for women who are affected.

I will not speak a great deal about endometriosis today, not because it is not important—it absolutely is—but because colleagues from across the Chamber have spoken so knowledgeably and eloquently. But I would first like to echo what others have said about Sir David Amess and the huge contribution he made. And I would like to reflect on a few things that we have heard that bear further examination.

My hon. Friend the Member for Livingston (Hannah Bardell) spoke so eloquently about the support of women campaigners. I really take my hat off to women like that. They are amazing people. The hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) noted the importance of recognising the mental health impact of both these conditions. And we have heard from hon. Members across the Chamber about the impact on people’s working lives. But I think the hon. Member for Streatham (Bell Ribeiro-Addy) spoke most powerfully. She spoke so well about her own experience—a really hard experience—as a woman with endometriosis. I hope that the Minister is able to reflect on that in the context of her response and the need for research.

I want to concentrate today on PCOS. I have been contacted by several constituents who have PCOS, and I have PCOS myself. Like many women with PCOS, I have not really spoken it a great deal—and to be perfectly honest, I had not intended to speak about it in the context of my work. It is a personal thing, but I decided that I would speak today because the silence around this condition really has to change. So many women are affected by PCOS, but so little is said about it, written about it and, frankly, known about it. We really need to shine a light on this condition and to push for far greater understanding and a far greater commitment to the research that can make a difference.

I was diagnosed with PCOS about 20 years ago, but to be honest, even though I initially spent quite a lot of time trying to research it myself, that was difficult, because much of the information that women would want to find and anticipate being able to find does not actually exist, because of the glaring lack of research. Like so many other women with PCOS, I have been in the dark most of the time, just because there is not enough understanding out there of this condition, which has certainly impacted on my day-to-day life.

I see that the Royal College of Obstetricians and Gynaecologists has helpfully put this in a nutshell for us all. It has established that less than 3% of the overall medical research funding in the UK is focused on women-specific diseases, such as endometriosis and PCOS. They are holding back women’s health outcomes and experiences and holding back our lives, yet that is the kind of priority—less than 3% for women-specific diseases—that these conditions are given. I reflect again on what the hon. Member for Streatham described.

I am pleased that the new Scottish Government have in their first 100 days published a new women’s health plan that includes several actions to improve access to appropriate support, speedy diagnosis and the best treatment for endometriosis. That is practical progress, and I hope it will have a knock-on effect for PCOS. That kind of practical action is really important and will make a difference to people’s daily lives, but we are working with one hand tied behind our backs if we do not focus on the dearth of research on, and lack of conversation around, both these conditions.

That is one call from Verity, the national PCOS charity, which does a fantastic job despite being volunteer-run. Those volunteers deserve our grateful thanks for their work and focus. We might want to take a wee minute to wonder why this condition, which affects up to 10% of women, has to rely on volunteers, however professional, influential and brilliant they are—they are all that. That is not illustrative of a collective appreciation of the harm PCOS causes daily to women throughout their lives.

The fact is that, like endometriosis, the cause of PCOS is unknown, and there is no cure. That can be quite devastating to hear, because as we have heard, some of the symptoms can have a significant impact on daily life—on what we would call normal life—and in a variety of ways. Bear in mind that some women will experience multiple issues once, including irregular periods, or a complete lack of periods. Again, that is not a topic I ever thought I would touch on at my work.

[Hannah Bardell]

Does my hon. Friend agree that her speech and that of the hon. Member for Streatham (Bell Ribeiro-Addy) show the very reason why diversity in our Parliament, including women who will come forward and be so brave as to share their personal experiences, is absolutely crucial?

[Kirsten Oswald]

My hon. Friend is right: we have to listen to women’s experiences, and I think the hon. Member for Bury South (Christian Wakeford) referenced that too. That really matters here. I never imagined talking about my experience of menstrual irregularity, ranging from nothing at all to a full, continuous six months of periods, which was both debilitating and, frankly, somewhat concerning.

It is fair to say that these are the kind of challenges that women would really rather do without. We heard about the irregular nature of fertility, including irregular ovulation, or no ovulation, which is an issue for women with PCOS, who of course probably do not know that until they find out that they are not pregnant when they are trying to be; reduced fertility—difficulty becoming pregnant—can be the reason why many women become aware that they have PCOS. That was certainly my experience, and it explained many other things. I may have a wee glimmer of light in what is possibly a quite depressing contribution: I have two amazing sons thanks to just a wee bit of PCOS-related medical assistance.

I can tell hon. Members, as we heard so eloquently from others, that women with PCOS can have a difficult time in many ways, particularly with issues such as hirsutism—unwanted facial or bodily hair. I cannot emphasise strongly enough how women are influenced by this. Again, there is no solution. Imagine the impact on the self-esteem of young women in particular. However, PCOS does not only affect young women, and young women are not alone in facing a severe impact on their life from these kinds of issues. None of us wants to sprout a beard, feel unable to go swimming or have to cover up from head to toe. Noting symptoms as oily skin and acne do not really cover the magnitude of those either.

PCOS is often assumed to related only to fertility, and that is a big issue, but all these other issues affect how the world sees us and how we present ourselves to the world. Thinning hair—male pattern baldness, basically —2014 is crushing to have to deal with. Being overweight is so common among PCOS-affected women because our bodies metabolise differently. For some women, that has a significant impact on both their health and on how they interact with the world. There are also depressions and mood changes. If I went through everything, we would be here all day. So many things have a connection to PCOS but, again, we cannot say exactly what or why because the research is not there.

As a younger woman with no idea of where to go for support, it was heartening to hear of women, such as the hon. Member for Streatham, speak about communities supporting one another. That is really helpful when diagnosis is not straightforward or where the issues are not resolvable, but we need to do better than that DIY approach. For young women and teenagers, it is rubbish in the age of Instagram to have to deal with unexplained weight gain or hair growing where it should not, and worries about the future. As for menopause, I have no idea what it will mean, but I would certainly like to know. When I looked into aging women, the best I could establish is that it is thought to be a medical black hole. That is simply not good enough, and that is why research is needed.

To conclude, I thank all the women who have been in touch with me about this matter—so many of them. I thank Verity PCOS and my constituent Anji Sandhu, who is in the process of setting up a group to raise awareness of PCOS and its challenges so that we can talk about it more. That will help because so many women are affected and rely on us here to take it seriously. At the moment it feels to them like a big, dirty secret, and that is what needs to stop. That is why we need research, and I hope that the Minister has something positive to say on that.

Covid-19 Update

Hannah Bardell Excerpts

Thursday 21st October 2021 Commons Chamber

[Maggie Throup]

There is absolutely no place for some of the disinformation on social media, and I request that that is looked at by the companies. A lot is taken down straightaway, but more can be done, because the message is that vaccines save lives.

[Hannah Bardell (Livingston) (SNP)]

The Minister will know that today the UN declared that we are on the brink of a catastrophic moral failure, and it singled out the UK as one of those taking a “me first” approach, on which it states:

“Ultimately, these actions will only prolong the pandemic, the restrictions needed to contain it, and human and economic suffering.”

The Health Secretary risked undermining confidence in the Medicines and Healthcare products Regulatory Agency when he incorrectly told the House that Valneva and Livingston’s covid-19 vaccine would not get approval from the MHRA. Thankfully, he corrected the record, but it led his former vaccine taskforce chair to call on him to resign with the publication of positive phase 3 data from Valneva. Will the Minister welcome this news and apologise for the uncertainty and distress that her colleague caused? If approved, the Valneva vaccine should be ideal for transportation in all countries. There is still an opportunity for her Government to step up and stop the pandemic running out of control.

[Maggie Throup]

We have a mature vaccines programme with a lot of supply. The MHRA is globally recognised as a good regulator. We need to take reference from that and from what we are doing elsewhere with other vaccine companies.