Recovering Access to Primary Care

Jim Shannon Excerpts

Tuesday 9th May 2023 Commons Chamber

[Steve Barclay]

My hon. Friend touches on an extremely important point. The measures will provide, for all Members of the House, much greater transparency on the variation between primary care settings. I am keen that we should publish much more information showing, within constituencies, the differences in the services offered by different primary care settings. We already see that between those that have digital telephony and online booking and those that do not, but we also see that in other indicators, and I am keen that he and other Members of the House get visibility of that.

[Jim Shannon (Strangford) (DUP)]

I thank the Secretary of State for his statement. The primary care recovery plan is very welcome, and it will be wonderful for NHS England when the goals are achieved. However, I have a very specific question about Northern Ireland. My constituents are struggling to get hold of their medical records over the phone for personal independence payment assessments and appeals. He referred in his statement to improvements in the app system. What discussions will he have with the Department of Health in Northern Ireland about introducing a similar system to enable patients in Northern Ireland to access their medical records via an NHS app?

[Steve Barclay]

The hon. Member is right to recognise the importance of access to medical records. It is a key part of the functionality that we are delivering through the NHS app. He is correct that that is focused on England and not on Northern Ireland, but I am very happy for us to have discussions with him and his colleagues in Northern Ireland on any shared practice.

Reforms to NHS Dentistry

Jim Shannon Excerpts

Thursday 27th April 2023 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

May I say what a pleasure it is to speak and give a Northern Ireland perspective to this debate, as I do in every debate I attend? The Minister has no responsibility for Northern Ireland—he knows that; I know that. Nonetheless, I would like to add a Northern Ireland perspective, which will back up the comments that others have made.

This is a matter of increasing concern as more and more dentists are refusing NHS clients and leaving a wide number of people without access to basic dental care. I will give two examples. One constituent came to see me after her front teeth bridge had fallen out, and we could get her a dentist only outside of the constituency, because there are no NHS dentists prepared or able to take that work on. It took one of my staff more than an hour to find someone accepting NHS dental charges, as all dentists have switched to a pay monthly plan. It is clear that covid-19, Ukraine and the rising prices are all taking their toll as the pressure lines up against dentists as well. Another lady come to see me who was in her 80s. She told me that because she does not do online banking, she had to pay a year in advance to stay on her dentist’s books. I find that reprehensible to say the least. While that lady did have the wherewithal to do so, not everyone does. With this happening, I believe that we can see the end of free NHS dental care. It cannot be that those on a low income ignore a loose filling until they lose a tooth, and yet that is what is happening.

Having said that, I have to make it clear that I am not saying that the dental industry is greedy. I am saying that I believe the Government must step in and devise a new scheme that will adequately compensate dental practices and allow people to access the dental service they so desperately need.

I received an interesting briefing from Denplan that highlighted the fact that more than 19 million dental appointments were lost over the course of 2020. Some 70% of Denplan member dentists reported concerns about the future financial stability of their practice, while

“the pandemic also exacerbated issues with mental health and wellbeing.”

The surveys included in the briefing

“indicated that dentists believe there is a misunderstanding of the industry in general”

—this is what the industry itself is saying—

“which has manifested into a relatively poor relationship between policymakers and the dental profession over the years. Member dentists who responded to the October 2020 survey, indicated dental services are often treated as an afterthought, with the government’s communication with the sector considered to be lacking.”

If I were to take one ask from today’s debate, that would be it. I know that this is a Minister who understands: he is always easy to speak to and engage with, and he understands things very well. May I ask him now to engage with the dentistry sector to come up with some ideas about how to move forward? That is what they desperately need.

The briefing states that

“67.52% of respondents to the 2020 survey, said they ‘strongly disagreed’ with the statement ‘the government understands the dental sector’.”

It is clear that the Government do not understand it. Moreover,

“36% of respondents said the pandemic had affected their oral health—with 50% of those who had seen a decline in their oral health, saying that they had had appointments delayed, or were unable to book any dental appointments with their dentists… According to our data, the pandemic also changed…attitudes towards dental treatment, with 29% saying that following issues during Covid-19, they now value their oral health more and are more likely to visit a dentist.”

That, at least, has been a plus factor. However, the briefing continues:

“Nonetheless, existing backlogs and an exodus of staff is preventing patients from accessing the dental care they need”.

Others have mentioned that.

I am very conscious of the timescale that is expected of me, Mr Deputy Speaker, but I want to make a very quick comment. On Tuesday morning, I saw a television programme—we probably all saw it—about a lady who, because she could not access a dentist, removed 12 of her teeth. That had all sorts of impacts, affecting her social engagement and causing her anxiety. A dental charity then stepped in and restored all her teeth. Today she is engaging with people again, and is back at work.

Sometimes people resort to doing things that they really should not do, and would not normally do. According to the briefing, some 41% of people in Britain said that they

“would be willing to undertake DIY dentistry”.

That worries me as well. Among younger people the figure was 48%, and among seniors it was some 28%.

Let me end by quoting Ciara Gallagher, chair of the Northern Ireland Dental Practice Committee. She has said this:

“In the meantime, practices need help, they need hope, and they need urgent action from the department to know that they have a future. They need support so that they are not being financially starved out of the NHS.”

I join all my colleagues who are present today, on both sides of the Chamber, in asking for better liaison with the dental industry, and increased funding to shore up NHS dental access throughout this great United Kingdom of Great Britain and Northern Ireland.

Medicinal Cannabis: Economic Contribution

Jim Shannon Excerpts

Thursday 20th April 2023 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak in this debate and to serve under your chairmanship, Mr Stringer. I thank the right hon. Member for Dumfriesshire, Clydesdale and Tweeddale (David Mundell) for leading the debate and for setting the scene so well and in such a balanced way. In his introduction, he said that we all have constituents who have benefited from medicinal cannabis. I have one such constituent, and I want to speak about that young girl and her family, because I have seen at first hand exactly what medicinal cannabis can do to improve health, to lift the fortunes of a family and to give them the encouragement that they need.

As the DUP spokesperson for health, these issues are very important to me. I have seen at first hand the impacts that medicinal cannabis can have on people who are ill. It is sad that it does not work for everyone, but it has certainly worked in cases that I am aware of. There are success stories, but also a large proportion of people for whom it does not work. However, for those who are fortunate enough to see results, it is a crucial treatment that can ultimately save lives. I am here today to celebrate that.

By their very nature, issues such as this can sometimes be contentious. The right hon. Gentleman set the scene well and got the balance right. I congratulate him on that because he presented the issue well. This subject sometimes sparks debate, but we would try anything if it gave someone a better chance at life.

There is never a debate on this topic in which I do not highlight the benefit of regulated medicinal cannabis prescription by talking about lovely Sophia Gibson. She is a young girl who, at about six or seven years old, was having epileptic fits every day of her life. In my office, I have a photograph of her from when she was smaller. She is the daughter of Danielle and Darren and has Dravet syndrome, which is incurable, and she will continue to have seizures until her wee body can no longer cope.

Medicinal cannabis is not the cure for Sophia—there is no cure—but that young girl’s quality of life has changed dramatically. I can remember when the epileptic fits were of such ferocity and in such numbers that it was impossible for that young girl to have a normal life, but today her life has changed. The prescription from the health board changed not only her life but the lives of her distraught parents. She was in hospital every month and was missing months of schooling at a time, but Sophia’s THC prescription has enabled her to attend school, because the intensity and number of her epileptic seizures has drastically reduced.

I recall the meeting that I had in this House with the then Minister, Mark Field, and Sophia’s mother, Danielle. I have said it before in this House and I will say it again: the Minister was such a help to Danielle, young Sophia and the whole family in moving forward. Ultimately, through Mark Field’s help, the assistance of the health board back home and the Department here, Sophia was able to receive medicinal cannabis and her life changed. That is what I see: I see a real difference in a young girl who was potentially looking at a life that was going to get worse and worse.

I have a wee nephew. I often say this, and I say it with regret because medicinal cannabis was neither available at that time nor did I have knowledge of it. My sister, Joy, has one child. He has epileptic fits. I often wonder whether, if he had had access to medicinal cannabis, it would have been possible to have changed his life. I am not saying that would have been the case, but now it is too late, because he has had so many years with the condition that it is impossible to put his life back.

Sophia still needs 24-hour care, but she can also live a life with her family. It did my heart glad to see her travel, as she did just last year with her family to Disneyland Paris. The family always bring their pictures in to encourage me; it is good to see her progress through the pictures. I saw a picture of Princess Belle dancing with Sophia. That would not have been possible without the blood, sweat and tears, the dedication and commitment, of her mum and dad, who did not cease until their daughter got the medication—they would do anything for their child, as parents do; and how right they are—or without the Health Minister at the time, Mark Field. Nor would it have been possible without the will of this House to take steps to provide for the safe classification of this drug for medicinal purposes.

While I celebrate Sophia’s victory, I also support my colleagues in trying to secure access for more children like her. That is why I am here today. When I saw the title of the debate, I automatically said to Naomi, my speechwriter, “I’ve got to be here for this debate—it’s important to me.” I have seen first hand the improvement to Sophia’s quality of life, and I want more people to be able to access this treatment for that purpose. I want to clarify: I am not looking for a free-for-all—and I do not think the right hon. Member for Dumfriesshire, Clydesdale and Tweeddale is either, by the way. I want a process that allocates the drug in specific circumstances, as directed by the Health Department. I do not think we are currently there.

There are so many companies that are investing in cannabis plant products for healthcare, because the benefits for those it works for are incredible. We know that the UK is the world’s biggest producer and exporter of legal cannabis for medical and scientific purposes. Globally, there is a rising trend in the legal production and use of cannabis for medicinal and scientific purposes. Jazz Pharmaceuticals has offices in Oxford, Cambridge and London, and manufactures the products Epidyolex and Sativex, and Target Healthcare makes certain bedrocan cannabis oils in the UK. In 2019, a major US cannabis company set up its European headquarters in—guess where?—Belfast. Colorado-based Mile High Labs, which is the largest extractor of cannabidiol isolate in the world, established its base on the Boucher Road in Belfast, so we have moved forward.

The benefit of medicinal cannabis to individuals and their families, as well as the economic benefit that is starting to arise from it, is reason enough to review the approach. That is what the right hon. Member is asking for, and I support his request. We are talking about allowing wider production and delivery within—ever mindful of what I said earlier—the strictest of frameworks. I will be clear again: I am not in favour of legalised cannabis in any other capacity than GP or consultant-led, and within the strictest medical protocols. But I believe that we can and should provide a safe and effective product to help those who need it for specific reasons within the pro forma.

I again thank the right hon. Member for introducing the debate. Sophia is my example of a young girl who has progressed to the point where she can attend school regularly. I met her at one of the fun days down on the West Winds estate in Newtownards last year. What a difference I can see in that wee girl. The wee girl in the photograph in my office was, at the time, having fits every half an hour or 45 minutes. Today, her and her parents’ lives have changed. In Sophia’s case, medical cannabis gave her a chance to live her best life with a debilitating condition. That is vitally important. I know each one of us in the Chamber wholeheartedly supports that. Can we make someone’s life better? I think we can. Sometimes when we do so, it is such a magnificent occurrence that it leaves a lasting effect on us.

NHS Strikes

Jim Shannon Excerpts

Monday 17th April 2023 Commons Chamber

[Steve Barclay]

I do share my hon. Friend’s concern. Full Fact has shown that the figure is inaccurate. It disregards higher pay later in the evenings and at weekends. It ignores the 20% that goes into pensions and that junior doctors, probably more than any other profession, have very quick pay and career progression. That is why, as part of our listening exercise, we made changes to pensions in the Budget. That was a reflection of the fact that senior doctors have often accumulated those pension pots, which is one of the other challenges we are dealing with. It is an indication of the career and pay progression that many junior doctors will see later in their careers.

[Jim Shannon (Strangford) (DUP)]

I thank the Secretary of State very much for his endeavours to find a pay settlement, ever mindful that it is more than pay that some NHS staff wish to see. To give an example of that, I recently sat listening to one of my constituents who is in foundation year 1. She was brought to tears by the stress and pressure on her young shoulders. When she finally finishes shifts, she lies awake going over the decisions made. In her view, she would keep her pay the same to have more qualified staff available. How will the Secretary of State’s proposals make adequate support on the wards possible?

[Steve Barclay]

The hon. Gentleman raises an important issue, and there is a lot more we can do around the skills mix in the NHS and ensuring that people operate at what is referred to as the top of their licence and make the maximum of the training they have. Often there are restrictions in place. We are looking at physician associates and medical examiners and at the role of pharmacists within primary care, as well as at how we get the right continuing professional development to train people, so that we get more of the career ladder from different roles.

There is a lot that we are looking at, in the context of the workforce plan, around the right skills mix, the right training and job evaluation. That was one of the issues in my discussions with the staff council—for example, there was a particular focus on apprenticeships. Sometimes people take a pay hit when they go into an apprenticeship if they were at the top of their previous band. That is one of the things we agreed to work on with the staff council. Again, I am sure that an area of consensus in the House will be that apprenticeships offer great opportunities for people to progress, and we should not have a financial penalty when people pursue them.

Junior Doctors’ Strikes

Jim Shannon Excerpts

Thursday 30th March 2023 Commons Chamber

[Steve Barclay]

There are two different things there—one on which the hon. Gentleman is correct and one on which he is not. He is correct that we have said that a precondition for meaningful and constructive talks is that the trade union suspends strikes. That is a precondition that the other trade unions were more than willing to accept, and it is applied in other sectors such as education. We have been clear on that.

The hon. Gentleman is not correct on my point about militancy, which referred to the junior doctors committee specifically. We stand ready and recognise the real pressure that many within the junior doctors community have faced. The NHS has been under significant pressure coming out of the pandemic. We recognise that there are issues on which we want to work and have constructive engagement with them. It is just regrettable that some in the junior doctors committee of the BMA want, as they have said in media interviews, to take a more overt political agenda, rather than work with us to focus on the real issues that many junior doctors are concerned about.

[Jim Shannon (Strangford) (DUP)]

I note that the Secretary of State is trying extremely hard to try to find settlements. The settlement with the Royal College of Nursing and the nurses is an example of just that, although it took a bit of time—I would have liked to see it happen sooner. Will the Secretary of State outline what support is available for junior doctors who need greater support from registrars and consultants to restore confidence—that is the whole point of the F1 and F2 process—so that they are not left to drown under the pressure of handling entire wards on the worst shift patterns possible, wondering, when they go home, whether the decisions that they have made are the wrong ones? Will the Secretary of State ensure that financial and wage negotiations will be constructive, as he did when it came to the RCN and the nurses?

[Steve Barclay]

I am very happy to give the hon. Gentleman reassurance about our desire to have that constructive engagement, exactly as we had with colleagues on the NHS staff council. There are a number of issues on which we are keen to work with junior doctors: rostering; which he mentioned; holidays, which are sometimes cancelled at short notice—a range of issues have been raised with me. When I go on visits to hospitals, as I do frequently, staff raise a range of issues, and I am very keen to work through them with junior doctors. I think that people can see from the approach that we took not just with “Agenda for Change”, but with the pension changes that were announced in the Budget, that the Government are working constructively with the NHS to address those issues. We stand ready to have exactly that meaningful and constructive engagement with junior doctors.

Medical Technology Regulations and the NHS

Jim Shannon Excerpts

Tuesday 28th March 2023 Westminster Hall

[Dame Caroline Dinenage (Gosport) (Con)]

I beg to move,

That this House has considered medical technology regulations and the NHS.

It is a great pleasure to serve under your chairmanship, Sir Gary, and to talk about the importance of medical innovation and medical technology in our NHS. We know that the NHS faces significant challenges, but medical technology—or health tech, as it is often called—holds many of the solutions that are necessary to achieve things such as delivering improved patient outcomes and facilitating the transition to more sustainable models of health and care delivery. It also has massive potential to drive economic growth.

Health tech includes everything from laboratory tests to wound care dressings, mental health apps, implantable defibrillators and critical technology—everything that is absolutely fundamental to the diagnosis and treatment of health conditions. Life-saving and life-enhancing health technologies, such as cardiac pacemakers and artificial knees and hips, are already highly regulated products. While we were part of the EU, UK-based health tech was subject to CE marking, but now there is a need to develop sovereign regulatory arrangements that provide equal levels of patient safety while protecting timely access to global life-saving and life-enhancing health technologies.

The Medicines and Healthcare products Regulatory Agency is solely responsible for regulating the UK’s medical devices market and is mandated to ensure that patient safety is protected, irrespective of where a product is manufactured. The MHRA has a huge responsibility on its shoulders, and it is for that reason that I welcome the Chancellor’s commitment in the spring Budget to reform regulations around medicines and medical technologies. In fact, that was the thrust of why I asked for this debate, so it is lovely to be able to welcome that announcement rather than to be pushing for it. It is a much more comfortable position for me to be in.

The Chancellor confirmed that the MHRA will receive £10 million of extra funding over two years to maximise its use of Brexit freedoms and accelerate patient access to treatments. He also confirmed that the MHRA is moving to a new model, which will allow near automatic sign-off for medicines and technologies that have already been approved by trusted international partners in places such as the USA, Japan and Europe. That is important, because the US Food and Drug Administration—the FDA—is recognised as delivering high-quality, innovative health tech to its citizens in a timely manner while maintaining high standards of patient safety. Those product regulation-equivalent routes, which recognise the decisions of trusted jurisdictions that have already looked at medicines and technologies very carefully, can protect NHS patients’ access to high-quality products and allow our own regulator to focus resources on where they can make the most impact.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Lady for bringing this issue forward, and I apologise to her and others for not being able to stay—I have another meeting at 5 o’clock, as I mentioned to you, Sir Gary.

I am my party’s health spokesperson, so I am very aware that regulation is essential to our health service. I strongly believe that regulation and demand should go hand in hand on health. Regulating the use of apparatus, instruments, tools, scanners, drugs and monitors is one thing, but does the hon. Lady agree that accessing them is another? It is imperative that we ensure that patients can make use of life-saving treatments. Aspiration is good, but delivery is better.

[Dame Caroline Dinenage]

It is always a great pleasure to see the hon. Gentleman, who always make very sensible interventions on these issues. He is absolutely right: we need the right regulation in place, but we also need to have the facilities to make sure that, once technology and treatments have been approved, they are easily and quickly accessible to those who most need them.

I will be the first to admit that I was not the biggest advocate of Brexit. However, the freedoms afforded by Brexit allow us the opportunity to recognise approvals from any jurisdiction that we deem appropriate. Of course, any products that enter the UK market via regulatory equivalence routes from trusted international jurisdictions will need to be approved by the MHRA and to be subject to strict vigilance and post-market surveillance requirements, so a number of checks and balances are in place for British patients. However, this new system post Brexit gives the UK more control to determine what products can be placed on the market.

As the hon. Member for Strangford (Jim Shannon) said, we must ensure that the regulatory system is robust but also prevent the UK from becoming a secondary market, where patients and clinicians have less access to technologies. The right system not only increases the UK’s access to the newest innovations but increases patient safety by maintaining access to the widest possible range of thoroughly regulated and already available health technology from around the world.

Therefore, my first question to my hon. Friend the Minister—I should warn him I have two or three—is whether he can confirm the timescales for the new model to ensure continued patient access to health tech and whether there will be a sense of urgency about this. The Minister and you, Sir Gary, will know that the pandemic, through the early innovation of the vaccines and the remarkable work done by British scientists, demonstrated the UK’s ability to be a real science and technology superpower. However, there is an urgent need for action to ensure that we do not lose the opportunity to impact patients’ lives and effectively deliver on this ambition and this ability.

We have the potential to make the United Kingdom the most attractive place in the world for innovation and, in particular, medical innovation. We know that medical technology helps to deliver better patient outcomes, improves care pathways, drives cost savings in the NHS, reduces the burden on the workforce and, critically, can help to reduce the backlogs. This matters to people’s lives. In the Hampshire and Isle of Wight integrated care board area, more than 54,000 people are waiting to start treatment. The average time people are waiting in my local area to start their treatment is 16.9 weeks, with 47% of patients waiting more than 18 weeks. That is why we need to capture the potential of every way possible of ensuring that people get access to treatments as effectively and quickly as possible.

In Gosport, 1,500 people have a dementia diagnosis. Dementia is one of the biggest healthcare challenges facing us as a nation, but there are some exciting and innovative developments there too. The EDoN—Early Detection of Neurodegenerative diseases—project will use wearable tech to detect signs of dementia even 10 to 15 years before symptoms appear. Too often, a dementia diagnosis comes far too late—once symptoms are already well advanced. This technology could be game changing by allowing people to make advance lifestyle interventions that might minimise the impact of the condition. However, it will also enable scientists to make a huge contribution to research and clinical trials of drugs and interventions that will work, inevitably in the long term, through to treatments and cures.

This is also an area where we need to see the rapid approval of new treatments as they become available. In January, the FDA—the US regulator—approved the first treatment shown to slow degeneration in dementia. Two drugs are currently on trial in the UK, and the people conducting the trials expect to publish their findings later this year. Neither drug has an easy name to pronounce: donanemab and lecanemab. Can the Minister please assure me that the MHRA stands ready to accelerate the approval of these schemes as soon as they become available—it sounds as though one is imminent; it may be in the next couple of months—so they can start supporting patients at the earliest opportunity?

If I may just flag one issue with the Minister, one obstacle to these drugs being available on the NHS is the National Institute for Health and Care Excellence guidelines, which often approve medicines based on their cost-effectiveness. In this case, it will be remaining years of healthy lifespan versus the cost to the NHS. The cost of dementia is of course largely not borne by the NHS—the cost to it is only about £1.5 billion a year, compared with the £26 billion borne by the adult social care system and the informal care sector.

Will the Minister kindly agree to meet Alzheimer’s Research UK to discuss how we can best ensure that UK patients get swift access to the best possible dementia drugs as soon as they are available and that the systems designed to offer checks and balances, such as NICE, do not prove to be an obstacle to that?

Will the Minister assure us that every effort will be made to engage with the global health tech industry to ensure that the UK proactively seeks innovations for the benefit of UK patients while encouraging UK-based innovation? There is a lot of innovative practice going on right under our noses. Health tech will play such a key role in driving not only UK national economic growth but great amounts of regional growth. There is an organisation called SIGHT, or Supporting Innovation and Growth in Healthcare Technologies, which is a business support programme developed by the University of Portsmouth to provide help and guidance to small and medium-sized businesses in the healthcare technology sector. In the Wessex region, which is where Gosport sits, 10% of the workforce is employed in the health economy, and more than 300 health and life sciences companies are focused on medical technological innovation. The SIGHT process will provide an important boost to the regional economy through its support for the sector. What steps is the Minister taking to encourage local innovation and entrepreneurship in the medical technology sector, and how can he enable the implementation of innovation in the local care system, which can sometimes be quite risk averse?

To maintain the NHS’s access to the 600,000 currently available CE-marked products, it will be important not to add unnecessary burdens on to manufacturers that already supply a relatively small market, so transitional arrangements provide for a dual regulatory regime, with the unilateral recognition of CE marking in place until July 2024, subject to legislative approval. That recognition could be continued and expanded for the benefit of the NHS and patients across the country. Perhaps the Minister could talk a bit about that.

We need to act fast. A recent survey by the Association of British HealthTech Industries—the ABHI—shows that one in five products is expected to be removed from the market over the next five years, and one in 10 companies is halting all innovation activity. That has been driven by persistent uncertainty, constrained capacity in the system and increasing costs. The ABHI survey also highlighted that 67% of the health tech industry expect a delay in bringing innovation to the UK, and the figure rises to 86% for those manufacturing in vitro diagnostic medical services.

The right kind of regulation will be key in setting the standard as to whether the UK is an attractive place to do business and promote innovation. It will ensure that UK patients continue to receive world-class technologies such as surgical robots and digitally enabled remote care, and it will protect our ability to react swiftly and effectively to any further pandemics by developing the latest diagnostic tests.

In addition, I understand that the Government are already committed to a medical device information system. That will collect key details of the implementation of all devices, which will be linked to a specific register to research and audit patient outcomes. That will deliver a system that allows the UK to record and access device safety and patient outcomes. That medical device roadmap lays out an ambitious vision for how the UK can become world leading in this space and a real global superpower in digitally enabled health tech. Will the Minister assure us that its delivery will be prioritised to ensure that we build on the positive reaction to its publication?

There are concerns that existing capacity constraints may impact the MHRA’s ability to deliver and most effectively use the additional funding that the Chancellor has made available. Making the most of expertise and capabilities across the ecosystem will be crucial. As well as the development of more product regulation equivalence routes to allow for the recognition of approvals in other trusted jurisdictions, we must explore all other options to ensure the expansion of existing capacity, including by reviewing the role that the MHRA can take in direct regulation, providing it with both the resource and political impetus to increase UK regulatory ambition, and enabling the development of recognition and innovation systems.

The recent commitment by the Chancellor and the Prime Minister is welcome, and it indicates that the Government truly recognise the need to ensure that there is appropriate focus and support for the ambitious innovation programme that supports clinical and patient need, availability, and choice. It is by investing in developing the skills required that we can ensure that the UK continues to be a leader in regulating the technologies of the future.

The freedoms afforded by Brexit allow us to seize the once-in-a-generation opportunity to deliver a best-in-class regulatory system and enable the health tech industry to support the drive for the UK to become, and continue to be, a global science and technology superpower.

Car Parking: Care Workers

Jim Shannon Excerpts

Thursday 16th March 2023 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Member for Southport (Damien Moore) for setting the scene so well. I always try to contribute in debates on health issues, as Members know. Here we are again: the hardy annuals are back. The Minister, the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne) and others are here to contribute.

I am an advocate for care in the community. I feel strongly about the problems the hon. Member for Southport outlined.

I know the Minister has responsibility only for the mainland, but I always try to give a Northern Ireland perspective to any debate. It will be not just a Northern Ireland perspective, but a personal one, as it relates to my brother. He had a very severe motorbike accident when he was 39 years of age, some 18 years ago now. They said he would never be independent again and would never be able to do the things he once did. And he cannot, because he has been left with some fairly severe brain injuries.

Although our Keith cannot multitask, he can still have a life—but it is restricted and he is dependent on others. My mother is 91 years of age. I refer to her as a spitfire, because she is a lady who pushes and pushes. She pushed for Keith because she wanted him to return home and have a life, even though it would be with care attendants for a time. She pushed him into rehabilitation. He was determined, but she also made sure that the carers and the health system pushed for him. She pushed the workers in the care homes to keep driving him further. She pushed the trust to provide the care for him. Keith has been living at the bottom of my lane—I live on a farm and the house he lives in is a house that I built—and he gets picked up by the bus drivers outside the house. There is no bus stop. They drop him into Ards and he goes to the centre where he learns further rehabilitation and engages with others who have similar disabilities. It gives him the chance to have as normal a life as possible.

His care workers come in four times a day and help him get up. He has a brilliant life even with all his limitations. It is clear that Keith would have been in a care home under supervision and without care in the community had it not been for the pushing of my mother and others who wanted to give him a good level of care. I have no shame in saying that care workers are not paid enough. We need to right that wrong. We will all say that here, because we all believe it. It is a truth. The debate allows us to go beyond just a clap, which is commendable, and to send the message that we applaud their work and will make changes to support them further.

While Keith has a driveway that the workers park in, many town centre homes do not have parking. To park on the street will mean a ticket from the ever-present, sometimes overzealous, traffic warden. Currently, staff pay the minimum amount for an hour’s parking, even though the call will last only 15 minutes, and they cannot claim for that. It presents a problem, which the hon. Member for Southport has outlined very well. To me it is very clear: all staff should have a parking charge exemption permit issued by local authorities that entitles them to an hour’s free parking either on the street, as long as no obstruction is caused, or in a local car park where feasible. Those are not big things to ask for, but they would change the lives of care workers where we are.

It is right and proper that in Northern Ireland health trusts car parking is set to become free next year. I know that is not the Minister’s responsibility, but I wanted to mention it. I have grave concerns when I read articles such as that on the BBC 12 hours ago that cited the massive overspend of £500 million and the fact that:

“The Department of Health has said there are channels to generate income, such as continued car parking charges…prescription charges…and charging for domiciliary care...It’s thought that each £15m generated would enable about 30,000 assessments, diagnostic tests or procedures for patients with cancer or time-critical conditions.”

That is a matter for another debate, but I wanted to make the point that there are always things we can do financially. It would be a massive slap in the face for our care workers to continue to pay for parking, and we should do our best to help them.

The facts are clear. Care workers, district nurses and all of those in care in the community simply are not remunerated to the level they should be. If a call lasts longer, they do not get overtime. It comes out of their own time. I have a good relationship with a district nurse in Strangford who makes her patient tea and toast even if that means that she cannot take her tea and toast at lunchtime, and that is her contribution to the person she looks after. I do not think that any MP, including yourself, Sir Robert, who would be unable to give an example of that very thing happening with the care workers in their constituencies—those good people. She sacrifices her time for her patients’ comfort and, to add to that, she has to pay for the parking to do so.

The request is clear, and the hon. Member for Southport has outlined it. There is something wrong with the picture, which is why I wholeheartedly support him. More than that, as I always do, I look to the Minister—who, I believe, clearly understands our requests—to make representations to other Cabinet colleagues to ensure that additional discussions take place to enable care workers to get the help they need. If the Minister is of a mind to do so, I ask her to have some discussions with Northern Ireland officials to ensure that we are encouraged to do something similar back home through the Northern Ireland Assembly.

We have drained our health workers of good will, expecting more and more and sometimes, unfortunately, granting less and less. We need to start working on rebuilding trust and good faith, and this is a great step in that journey. I am encouraged by today’s good news that we seem to be moving closer to a wage settlement. Let us welcome that good news, but let us also try to welcome more good news for care workers when it comes to giving them the help with car parking that they need so much.

Cancer Care

Jim Shannon Excerpts

Tuesday 14th March 2023 Westminster Hall

[Nicola Richards]

I totally agree. Any statistics and data that we can gather will help us to improve services and understand the landscape when it comes to who is affected and when cancer can recur, and it is important that we take all that into account. It is important to have a long-term plan for making our cancer services fit for what is to come. They need to cope with the increased demand, and deliver the world-leading outcomes that patients deserve.

Last year, the Government declared war on cancer. They announced a 10-year plan to ramp up our cancer services and make them the world leader that they ought to be. However, we now know that our plans for cancer care will become part of the five-year major conditions strategy. Although it is clearly important to take a holistic approach to caring for people with life-threatening diseases, there is no killer like cancer. We must ensure that our strategy addresses the key elements of what would be a world-leading cancer care system: research, prevention, diagnosis, treatment and care. I will first discuss one of the most important elements that we need addressed in the strategy: diagnosis.

Finding cancer early and commencing treatment is key to survival rates. For instance, 90% of people diagnosed at the earliest stage of bowel cancer will survive for five years or more, compared with just 10% of those diagnosed at the latest stage. Furthermore, almost everyone diagnosed with breast cancer at the earliest stage can receive treatment and live for five years or more, whereas only three in 10 women diagnosed at the latest stage survive for more than five years. The picture also varies by region. Unfortunately, if someone lives in the west midlands, they are statistically less likely to survive for five years or more after being diagnosed with lung cancer than those across England on average, and all combined mortality rates are significantly higher than average, too. Those stark figures hammer home the need to make sure that we detect cancer and commence treatment at the earliest opportunity.

I welcome the commitment from the Secretary of State for Health and Social Care that the strategy will shift our model towards the early detection and treatment of diseases. I also welcome the ambitious target set to diagnose 75% of cancers early by 2028. I look forward to reviewing how the strategy will address the need for greater capacity in the breast screening programme, ensure that all women at elevated risk of breast cancer are included in the national breast screening programme, and raise the proportion of all cancers that are diagnosed early; at present, just under 60% are.

Of course, it is not enough to detect cancer in its earliest stage. We also have to make sure that people receive treatment promptly, especially after urgent referrals. Much work still needs to be done in that area. Only 54.5% of people starting their treatment after an urgent referral do so within the 62-day target, and around 2,100 people have waited more than 104 days to begin their treatment. In my constituency of West Bromwich East and the wider Sandwell area, there is a mixed picture when it comes to meeting those important targets. It is welcome that our local health service met the two-week target for referring urgent suspected cancer cases to a specialist. However, like much of the rest of the country, other targets, including the 62-day standard, were not met. When I compare those statistics with the survival rates that I mentioned, it is obvious that we have to do more to ensure that people start treatment as early as possible. A critical element of that is ensuring that cancer services are sufficiently well staffed.

It would be remiss of me not to honour the people who work day in, day out, providing care for cancer patients across the country. We have all relied on them to care for us and our loved ones, in sometimes the most desperate circumstances, and to provide comfort for us in our time of need. I put on the record my thanks to the Mary Stevens Hospice in the constituency of my hon. Friend the Member for Stourbridge (Suzanne Webb); it looked after my mum in her last days, and held a last-minute wedding blessing for me and my now husband at my mum’s request.

We need to address the shortfalls in the workforce that are affecting our success in improving cancer outcomes. We have a shortfall of both clinical oncologists and radiologists, who are vital to the effort to diagnose and treat cancer patients in the earliest stages. It is so important to tackle the workforce issues with long-term plans to recruit and train the staff we need to tackle cancer properly. I welcome the Government’s NHS long-term workforce plan, which commits to addressing those and many other issues across the NHS workforce. I ask the Government to ensure that the necessary funding is provided to meet those commitments.

On the major conditions strategy, I hope that the Government will take into account the wealth of views expressed by Cancer Research UK and other key organisations in the cancer community in last year’s call for evidence, and ensure that the strategy lays the groundwork for a longer-term strategy on cancer that also tackles inequalities.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Lady for securing this debate. Four in 10 cancers across the UK are preventable. We all know that. Action to prevent cancers will save lives. Northern Ireland—this is not the responsibility of the Minister, by the way—has no smoke-free target. We need a strategy to stop people smoking, to encourage young people not to start smoking, and to fund research and support programmes. Does the hon. Lady agree that we must have a UK-wide smoke-free target? Despite health being a devolved issue, we have to be on the same page to create a national target to prevent some of the deadliest cancers that so many people suffer from and lose their lives to. She is very much committed to that, as am I.

[Nicola Richards]

I completely agree. It is important that we do wider work around prevention, so that when someone who has a history of cancer in their family presents themselves to the NHS, they are taken seriously and their health is evaluated at the earliest stage. That could save the NHS a lot of money and the individual and their family a lot of pain and suffering.

In my constituency of West Bromwich East and the wider Sandwell area, we have worse health outcomes than other areas of the country, as I mentioned. Combined mortality rates for all cancers are higher in the west midlands than the English average. That situation must improve. We have a fantastic opportunity to level up healthcare in our area through the new Midland Metropolitan University Hospital, which will open to my constituents in West Bromwich in the coming year. It is one of a number of new hospitals that this Government are delivering to help level up healthcare. It is vital that we properly equip new and existing hospitals, so that we can tackle waiting times and improve outcomes for patients.

One of the more high-tech solutions, of which we need to see more, is radiotherapy. I recently attended an event in Parliament hosted by Radiotherapy UK and learned more about this form of treatment, which is known to be extremely cost-effective and less invasive. It costs around £3,000 to £7,000 to cure a cancer patient using radiotherapy. West Bromwich Albion legend, Bryan Robson, also attended the event in support of radiotherapy, and I had the opportunity to have a brief chat with him to discuss how the treatment saved his life. During the event, I signed the declaration asking for more action to tackle waiting times and in support of radiotherapy.

The major conditions strategy is an opportunity to refocus on this type of treatment and to ensure that it receives the necessary investment, so that many more people around the country have the option of radiotherapy to treat their cancer. Although having world-leading facilities is vital, they must be backed up with the world-leading strategy we need, and staffed with the people who provide the excellent levels of care that we know our workforce can provide when they are given the right tools. I therefore welcome the Government’s plans to ensure that we tackle the health inequalities between our regions, and I look forward to hearing more about what that means for cancer patients across the country.

I welcome the positive steps that we have already taken to improve cancer care in this country. Evidence suggests that countries with the best cancer outcomes are those that adopt long-term cancer-specific strategies. I therefore hope that the major conditions strategy will commit to improving outcomes for cancer patients and their families, as well as paving the way for a long-term strategy on cancer care that will make our services the best in the world.

Patients with Rare Diseases

Jim Shannon Excerpts

Thursday 9th March 2023 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered the matter of patients with rare diseases.

I thank Members for attending this afternoon. The 3 o’clock debate is often referred to as the graveyard shift, simply because there is no pressure on us in the main Chamber, so most Members have probably decided to make their way home. However, I am very pleased that some Members have made it their business to stay, so I thank them for that.

I am pleased to see the Minister in her place—she knows that I am fond of her. She always responds to my questions, as she did on Tuesday during Health questions. I am pleased as well to see the shadow Minister, the hon. Member for Enfield North (Feryal Clark). She is looking bright and breezy, given her condition. She does not have long to go now, but I am pleased to see her and we think of her often.

I have always been interested in rare diseases. In the Northern Ireland Assembly, I was a member of the Northern Ireland rare disease partnership. We have Patrick Toland from Northern Ireland in the Public Gallery today. I am pleased to see him and other members of rare disease groups. I will refer to them during my speech.

This subject first came to my attention through a constituent who told me that she had a rare disease. That is how I learnt about its prevalence and the numbers of people with rare diseases. I am the Democratic Unionist party’s health spokesperson, so I am pleased to be in a position to raise the issue of rare diseases in the best place—right here in Westminster Hall with a member of the Government, the Minister. Other representatives are here to do the same thing.

I have been contacted by many people who have asked me to highlight their cause. I will attempt to highlight as many as I can while still doing them justice. Rare diseases might simply be numbers for many of us, but for the families and the individuals, they are everything in life. We will remember that when we mention the figures. As some might be aware, 3.5 million people in the UK will be affected by a rare disease at some point in their lives, and 95% of rare diseases currently lack an approved treatment. However, there is hope on the horizon for the patients living with these devastating diseases—we will hear examples from other Members as well—with an increasing number of gene therapies.

I am pleased to see in the Chamber the chair of the all-party group on rare, genetic and undiagnosed conditions, the hon. Member for Blaydon (Liz Twist). She has much knowledge and brings a depth of detail and evidence to this debate. I congratulate her on the work that she does in the APPG, and I look forward to her contribution.

When it comes to gene therapies and advanced therapy medicinal products, many of which target rare diseases, there is the potential for those therapies to become a reality. Ultimately, we are always seeking that reality. The 62 ATMPs that are expected to be launched in the UK between 2023 and 2027 give us hope and some confidence that therapies and medications will be available for those with rare diseases. There is a need to act now to prepare the UK access and reimbursement landscape and to ensure that the system is ready to capitalise on the opportunities presented by the therapies. We look to the Minister—no pressure—to understand our preparedness and tell us what steps will be taken to prepare the NHS for the changes on the horizon.

I know that the Minister is responsible for England and that health issues are devolved to Scotland, Wales and Northern Ireland. However, I will ask towards the end, when we summarise our thoughts, that the Minister and the devolved Administrations work together. That is really important, because we can benefit from one another’s knowledge of the strategies here and the strategies in the regional Administrations.

The Neurological Alliance, which is a network of 80 organisations that work together to improve neuro services and transform the quality of life for people with neurological conditions, reports that one in six people in the United Kingdom of Great Britain and Northern Ireland live with a neurological condition. One of those is a rare neurological condition—an acquired nerve condition—called Miller Fisher syndrome. I ask about that because it has been brought to my attention by some of my constituents back home. Miller Fisher syndrome, or MFS, is a rare acquired nerve disease, first recognised by James Collier in 1932 as a clinical triad of ataxia, areflexia and—I will get tied up in these words—ophthalmoplegia. It was described in 1956 by Charles Miller Fisher as a possible variant of Guillain-Barré syndrome. I suspect that we may know that from the past.

MFS is rare, so like many rare diseases, it is often difficult to diagnose. It affects one to two people per 1 million each year. In MFS, the immune system attacks the nerves, which causes the demyelination of the nerve fibres in the brain and spinal cord. Most patients with MFS have a unique antibody that characterises the disorder. Patients suffer weakness of the eye muscles, blurred vision, impaired limb co-ordination, unsteadiness of gait and a loss of tendon reflexes. Other symptoms may include facial paralysis, difficulty swallowing, limb weakness and respiratory failure. With Miller Fisher syndrome, a lot of complex issues hit the body all at once.

MFS is a rare condition for doctors to encounter, so the presenting symptoms can initially lead to a list of different possible diagnoses. It is not possible for every doctor who is confronted with those symptoms to know exactly what the condition is. I will give another example shortly that shows that it sometimes takes days before those with the knowledge of rare diseases can diagnose which one it is. The presenting symptoms of ataxia and ophthalmoplegia can be confusing for the consultant and can suggest signs of motor neurone disease or, sometimes, multiple sclerosis. I have had many friends over the years who have had MS, and I had a very good friend who, unfortunately, died of motor neurone disease. I know some of the actions and symptoms that come from that.

One of my members of staff developed MFS in 2015. She reported the experience of the early onset of MFS as a gradual loss of control of the arms and legs in the days before, severe back pain, and a loss of feeling in the fingers and toes. She recalls, just before the onset of the condition, staggering into accident and emergency at the Ulster Hospital in Dundonald, which is our main hospital, looking like someone who was highly intoxicated —it looked like that, but it was not true. She was unable to walk in a straight line, and she struggled to remain upright. Just hours later, she was unable to walk or stand, and total paralysis set in over her whole body in a matter of hours. Obviously, that was incredibly worrying—not knowing what is wrong, but knowing that she could not blink. That gives hon. Members an idea of the complications.

It took several days for a diagnosis to come through, after discussions between the consultant specialist and researchers at Queen’s University Belfast, which does exceptional work in diagnosing and trying to find cures for rare diseases. My staff member recalls how, in the early days leading up to her diagnosis, there were discussions about MS or motor neurone disease, because doctors thought that her symptoms indicated that that was what was wrong. That was very frightening for her. Obviously, to think that she had either of those would be frightening enough, but when doctors looked, they realised that it was neither of them. Anyone would be desperate to know what on earth is happening to their body, and why they are unable to control any of their actions.

The good news is that the condition is rarely fatal—one of the few benefits. However, the most serious aspect is that patients can develop respiratory failure, and may require intubation in the intensive care unit. Awareness of rare conditions such as Miller Fisher syndrome needs increased focus, because it has a relatively sudden onset. It can happen very quickly, usually after pneumonia or a respiratory illness, which can trigger some of the problems. The patient does not know what is happening to them, other than that their body is suddenly grinding to a halt. They cannot walk, feel their hands or feet, swallow or see properly. It is as if their whole body is just shutting down; it is incredibly worrying.

Awareness and information is vital so that consultants may diagnose the condition faster and treatment can be administered. The advantage with MFS is that, once identified, it can be treated very effectively with immunoglobulin transfusions leading to a full recovery. A demyelinating condition such as Miller Fisher syndrome strikes without warning and is very frightening to experience; sufferers do not know what is happening, and they worry about what the future has in store for them.

It is vital that the Neurological Alliance Of Scotland, the Wales Neurological Alliance, and the Northern Ireland Neurological Charities Alliance are adequately resourced to collect the evidence and conduct the research needed to create real change throughout this United Kingdom of Great Britain and Northern Ireland. That way, there will be the support for the one in six people who experience rare neurological conditions such as Miller Fisher syndrome.

My question to the Minister is one that I often ask, but it is very important to do so. When it comes to research, what money are the Government setting aside for it? We are greatly encouraged by the money that is spent on research, but we want to see more—not for the sake of spending money but to find cures for diseases. When we look at the universities across the United Kingdom of Great Britain and Northern Ireland, Queen’s University in Belfast is one of the leading examples when it comes to trying to find cures for diseases. I know that is also replicated in Scotland, Wales and across the whole of England.

Another rare disease that I would like to raise awareness of is pemphigus. There are two major forms of pemphigus, and they are categorised based on the layer of skin where the blisters form and where the blisters are found on the body. The type of antibody that attacks the skin cells also helps to define the type of pemphigus. Pemphigus foliaceus is less common and only affects the skin. The blisters form in upper layers of the epidermis and may be itchy or painful. With pemphigus vulgaris, which is the most common type in the UK, blisters form in the mouth and other mucus surfaces, such as the nose and elsewhere, as well as on the skin. They develop within a deep layer of the epidermis and are often very painful.

Pemphigus vulgaris is by far the most common variant of pemphigus and even this type is rare, but it leaves lasting effects. We are discussing rare diseases that inhibit the ability to have a normal life—we are here to talk for those people. Cases of PV in the UK have been noted to be rising, and it is estimated to be found in 0.68 per 100,000 in the population. It is a rare disease that is unfortunately becoming a regular occurrence. The incidence of this strain is higher in women and in older age groups. Again, those are a category of people who need help now.

There was a time when PV was almost impossible to treat. Deaths were recorded as recently as 30 years ago, with a rate of 79% of sufferers dying within a year of diagnosis. That was before the advent of corticosteroids, which now effectively treat PV and bring it under control. There is an ethnic group aspect to the prevalence of PV; although it is seen in all races, it is noted to be found more frequently in Asian populations and in Ashkenazi Jews. PV may occur at any age, but is mostly seen in women between the ages of 30 and 70, and in adolescence girls are more often affected than boys. Again, we have moved forward and research has delivered. We should welcome the fact that a medication has been found that means that people do not die from it.

Pemphigus, like Miller Fisher syndrome, is associated with other autoimmune diseases and has been reported to have an association with myasthenia gravis. Normally, the immune system protects the body from infection and disease. At present, researchers do not know what causes the immune system to turn on the body’s own proteins. There is something wrong; we need to find out what it is. Evidence suggests that genetic and environmental factors may be involved. An environmental factor may trigger pemphigus in people who are at risk because of their genetic background. That is why it occurs more in those of an Asian background. In rare cases, pemphigus may be caused by a tumour or by certain medications that harm the body internally.

No one knows what causes pemphigus, but it is known that, like many other related diseases, there is a genetic fault at the start and a trigger, such as stress, another illness or a drug used to treat another condition, causes it to erupt. I use that word on purpose, because erupt is what it does—it comes on almost like a volcano and changes the person’s whole life. It is possible also these diseases tend to appear in later years because the immune system weakens with age.

A cure for these diseases is unavailable today, but they can be treated successfully. Remission can be achieved from pemphigus with either no ongoing treatment or a very small maintenance dose of the drug that manages it. Those are some of the steps forward. It is not cured, but the person can learn to live with it.

Support groups such as PEM Friends offer information and advice to people living with pemphigus. I ask the Minister to engage with PEM Friends, clinicians and researchers to gauge what steps can be taken to ensure proper funding is in place to address what can be a disfiguring disease and to work to find an effective cure. That is my second ask.

Rare diseases action plans have been published in Scotland, Wales and Northern Ireland. There is a framework in place, and I believe we can work better together on these matters. I said that at the beginning, and I still believe that. We can learn from each other, share what we have learned and all help each other across this great United Kingdom of Great Britain and Northern Ireland.

One in 17 people across the UK will be affected by a rare disease at some point in their lives, including approximately 110,000 people in Northern Ireland alone—wow, that is some figure! There is a large community that often feels lost, lonely, and isolated because of the rarity of their condition, which even their health professionals often have not heard of before. It is the nature of things that GPs do not know every rare disease.

The Northern Ireland Rare Diseases Partnership is a key stakeholder in the Northern Ireland rare diseases action plan. It highlighted its input into that important document, which could lead to great improvements for the Northern Ireland rare disease community. It stated that progress and work at speed are greatly hindered by the fact that that important action plan is unfunded. I ask the Minister: can discussions take place? Can we work together, fund the research together, and co-operate so that we all benefit from the research and the rare diseases action plans?

Let me leave Members with some statistics. Thirty per cent. of children diagnosed with a rare disease will not see their fifth birthday—just let that sink in. Rare diseases take an average of five years to diagnose, and only 5% of the 8,000 rare diseases have treatments.

Time is beating me. I have not raised the need for funding for Duchenne disease, including for research into the SMART suit. People will ask, “What’s a SMART suit?” Before I left my hotel, there was a mother on television telling her story. She is from London, I understand. Her son sang and played the guitar, but as he got older he unfortunately lost power in his arms. That lady was able to find someone to fund a solution: she got, I think, £1.25 million of lottery funding. The greatest wish of that wee boy of 14 was to play the guitar and sing at Woodstock. When someone loses upper body strength and function, they lose the ability to do the little things that are really the big things, like putting their hand up in class, feeding themselves and hugging their mum. However, a wearable device that will help to restore arm function—the SMART suit—is currently being developed, after being perfected by that lady for her son, with help from lottery funding and in conjunction with the University of Liverpool.

I have not been able to go into the plight of those with muscular dystrophy or even touch on Huntington’s disease. I will be in touch with the Minister separately to take those issues forward.

There is a common theme across a number of organisations that needs to be highlighted, as summarised by one of the bodies I have been in touch with, Takeda. Individuals and researchers from Takeda are in the Public Gallery today. First, there must be an improvement in the quality of care for people living with hereditary angioedema in order to bring UK standards in line with international best practice. A postcode lottery is sadly a reality for many, and I was pleased to hear thoughts on this at a meeting yesterday. With the quality of care determined by where a patient lives, variation continues across the HAE patient pathway.

Secondly, there must be an improvement in the time to diagnosis. The path to an accurate diagnosis can be a long and convoluted journey, which not only is an unpleasant and anxiety-inducing experience for a patient living with a rare disease or condition, but can delay access to the appropriate disease management, unnecessarily worsening the disease state. Unfortunately, it takes an average of 6.2 years to diagnose.

Thirdly, there must be an improvement in healthcare professional awareness. Rare diseases may present with multiple symptoms and healthcare professionals may not be familiar with a rare disease, which can lead to a lack of referral to the appropriate specialist. There is room for improvement for clinical professional awareness of HAE in all healthcare settings, particularly in A&E—just one example of where that extra focus is needed—so that patients presenting with acute and potentially life-threatening attacks can receive the most appropriate care when they need it most. If the Minister needs any more information, I am sure the organisation that is present would be more than happy to press for improvements through the Minister to make life better.

We also need an improvement in access to specialist care. Living with a rare disease often involves receiving complex care from multiple specialities. However, people living with HAE do not always have the access to specialists they need. I think we should make a plea for them. Some of them are here in the Public Gallery today, so it might be helpful to make a comment along those lines. That is particularly the case for access to psychologists, so that patients can manage the mental health impact of living with their condition. Very often, when it comes to physical problems, mental problems are not far behind. The pressure of life, deteriorating health and family, work and financial pressures all make a difference.

In addition, we need an improvement in access to treatment. Of the orphan medicines licensed in Europe between 2017 and 2020, only 71% are fully reimbursed through the NHS in England, and only 64% in Scotland. There are licensed treatment options aimed at minimising the number and the severity of HAE attacks, which can significantly improve quality of life and control of disease.

Looking at what can be done to help people with rare diseases is what today’s debate is about. We very much look forward to the response from the two shadows, the hon. Members for Enfield North and for Edinburgh North and Leith (Deidre Brock), and particularly from the Minister.

I understand that we cannot fund everything as we would like—if only we could—but there is more we can do. I urge us in this place, and the Minister, to do just that. We can make GPs more aware and ensure that there is training to recognise and cross-discipline information available to help to find that diagnosis. There are families who can be helped by knowing they are not alone; there are others going through the same thing, looking to connect. We can look at funding and deals with pharmaceutical companies; there are many out there who wish to help, and seek just that wee bit of encouragement and partnership with Government to take that forward. We must be determined to advance in any way we can. That is my desire, and I believe it is the desire of us all, including the Minister. We look to her, and to the Government, to lead the way on making progress with rare diseases.

I will conclude by saying that I believe we have something special here that we need to take forward. With that in mind, I hope that we can have good contributions from the shadow Ministers and my friend, the hon. Member for Blaydon, who chairs the APPG on rare, genetic and undiagnosed diseases. We look forward to the Minister’s response, because it will give encouragement to those who are here today.

--- Later in debate ---

[Deidre Brock (Edinburgh North and Leith) (SNP)]

It is a pleasure to serve under your chairship, Mr Sharma. I congratulate the hon. Member for Strangford (Jim Shannon) on securing this important debate. I was certainly not familiar with some of the details that we have heard today. I look forward to the Minister’s response.

A rare disease is defined as a condition that affects fewer than 1 in 2,000 people, but that statistic in isolation is misleading. It is estimated that over 412,000 people in Scotland have a rare disease—more than one in 10. Rare diseases might be individually rare, but collectively they are not uncommon. The hon. Member for Strangford reminded us that we must not look at the statistics simply as a series of numbers, because those numbers represent people and the family members around them—a very important point. He shared details of conditions that he is familiar with, and some that he is personally acquainted with through colleagues.

The hon. Member also spoke of the importance of the four nations working together. He will be pleased to hear that the Scottish Government worked closely with the other devolved bodies and the UK Government to produce the new UK rare diseases framework, which builds on the 2013 UK strategy for rare diseases. He is always an optimist, and he reminded us that there is hope, given the work being done on these issues. He brought our attention to the smart suit, which I had not been aware of. That sounds like a really positive development, so I look forward to hearing more about that and the differences it can make to the people who will be able to make use of it.

The hon. Member for Blaydon (Liz Twist), chair of the APPG on rare, genetic and undiagnosed conditions, spoke of the challenges for those with rare conditions, and described how they wait for years for a correct diagnosis. She spoke about the lack of recognition and diagnosis, which leads to further difficulties accessing vital support for housing and benefits—a really important point.

[Jim Shannon]

I thank the hon. Lady for making that point. I mentioned that it takes, on average, almost five years for a diagnosis. I am sure she will ask the Minister to get the diagnosis timescale reduced to a manageable period, because it is unacceptable to have to wait five years.

[Deidre Brock]

It is indeed unacceptable. I am sure the Minister will address that point. I thank the hon. Member for that intervention.

The hon. Member for Blaydon mentioned the emotional strain experienced by those with rare conditions and their families. Again, that was an important point. She also highlighted the need for longer-term funding for research and development. I hope the Minister will be able to give us good news on that front, because that is a crucial issue. Short-term funding dries up and leaves researchers high and dry when they could be progressing a method of addressing the conditions that people suffer from, which is what we would all like.

Rare Disease Day, marked on the last day of February each year, brings the rare disease community together to advocate with one voice, and to raise awareness of the impact of these often overlooked or unknown conditions, most of which do not have large advocacy groups or funding grants. Today marks an important opportunity to draw attention to them in Parliament, so I again congratulate the hon. Member for Strangford on securing the debate.

The long-term goal of the Rare Disease Day campaign is to achieve equitable access to diagnosis, treatment, health and social care, and social opportunity for people affected by a rare disease. As hon. Members have highlighted, rare diseases are often life-threatening or chronically debilitating, and can have a wide-ranging effect on a person’s life, impacting education, financial stability, mobility and mental health. As the hon. Member for Strangford said, 75% of rare diseases affect children, and more than 30% of children with a rare disease die before their fifth birthday—a tragic statistic that must strengthen our resolve to improve our knowledge, understanding and treatment of rare diseases.

As has been pointed out, for those living with a rare disease, a diagnosis is crucial to understanding how they can move forward with their life, treatment and prognosis. However, sadly it takes on average almost five years to receive an accurate diagnosis of a rare disease. It is therefore vital that all those living with a rare disease get the right diagnosis faster, and can access co-ordinated care and specialist treatment. That is a core objective in the Scottish Government’s rare disease action plan, published in December. It sets out how the Scottish Government will implement the priorities of the UK rare diseases framework. It was developed in close collaboration with the rare disease community to ensure that their needs are appropriately reflected across wider policy on, for example, mental health and social care.

The plan includes a number of objectives on ensuring that patients receive a faster diagnosis, including through genomic testing, which the Scottish Government are supporting through the implementation of the Genome UK strategy. The Scottish Strategic Network for Genomic Medicine was recently established to advise and make recommendations on genetic testing availability. It will also support the planning for future capacity in areas such as whole genome sequencing and expanding our whole exome sequencing services. Later this year, Scotland’s first ever genomics strategy will be published and backed by significant investment, with £5 million committed for 2022-23 alone.

As the hon. Member for Blaydon mentioned, newborn screening has a vital role in early diagnosis of some rare diseases and the initiation of early treatment to reduce complications. The Scottish Government are represented on the UK National Screening Committee, which makes its recommendations to all four health Departments across the UK. Through Scotland’s rare disease implementation group, those living with a rare disease will be involved in any future screening considerations, and given information so that they understand how screening impacts them and their families.

Another important commitment is the planned expansion of the Congenital Conditions and Rare Diseases Registration and Information Service for Scotland. That includes a national register that collects and holds information about babies in Scotland with a major structural or chromosomal condition or recognised syndrome. The register will be extended to collect and hold information on other rare diseases. Access to better data on rare diseases and making use of digital tools can help clinicians to make better informed decisions on care, prevent disease and allow better access to research and clinical trials. As has been mentioned, there are over 7,000 different rare diseases, so it is not possible for healthcare professionals to receive comprehensive training on every condition. It is therefore important that they are aware of rare diseases more broadly, and are more alert to considering them.

The Scottish Government are working with NHS Education for Scotland to embed more formal education about rare diseases in the training for healthcare professionals. In addition, information on rare diseases on NHS digital platforms will be improved, both for those diagnosed with a rare disease and for healthcare professionals.

Finally, the action plan sets out steps to improve the co-ordination of care, so that people living with rare diseases will have fewer wasted appointments, will benefit from the expertise that is available through multidisciplinary care, and will get care that is better tailored to their needs. That includes improving access to treatment and drugs, building on the ultra-orphan medicines pathway, which is improving access to medicines for rare and end-of-life conditions.

The Scottish Government are establishing a national care service to ensure that Scotland’s social care system consistently delivers high-quality services to benefit many people living with rare conditions. That is made possible by record funding of more than £19 billion for health and social care in the recent Scottish Budget, which represents more than £1 billion of new investment. I agree with the hon. Member for Strangford that it is imperative that we all continue to work across devolved and reserved areas to generate change for those living with rare diseases, their families and their carers. No one should be made to feel helpless or invisible because they have a rare disease.

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[The Minister for Social Care (Helen Whately)]

I thank the hon. Member for Strangford (Jim Shannon) for securing today’s important debate on rare diseases; it is always a great pleasure to debate these issues with him. He is so good at raising health issues that otherwise might not be talked about in this place. As he often does, he covered a huge range of things in his speech and very effectively brought the situation to life with personal stories of people he knows and patients. When he says to me that there is no pressure, I am not sure that he entirely means what he says, but he does it in an extremely friendly way.

As the Minister with oversight of rare diseases, among other things, in the Department for Health and Social Care, I welcome the pressure and the interest that the hon. Gentleman and other Members of Parliament have shown in this issue. He made the point, as did others, that rare diseases are rare but collectively common, especially among children, which, very sadly, leads to short lives for some. During the course of my speech I will mention many of the things that he raised this afternoon.

It was good to hear too from the hon. Member for Blaydon (Liz Twist), who is very effective in her role as chair of the APPG on rare, genetic and undiagnosed conditions. She spoke about some of the problems for people with rare diseases, including potentially waiting a long time for a diagnosis, the difficulty in accessing treatments, mental health challenges, and difficulties with co-ordination of care. She also mentioned the importance of the screening of research, and she spoke about access to the innovative medicines fund. Again, I shall pick up on several of those points this afternoon.

Just last week, on 28 February, we marked Rare Disease Day. On that day, we heard first-hand stories of the huge impact of rare diseases on people’s lives, and many of those stories have been echoed today. Some of the challenges facing people with rare diseases are unique and personal, but many others are shared by the 3.5 million people across the UK who make up this diverse and resilient community. The Government are committed to overcoming the challenges in order to secure a better future for all of those living with rare diseases.

The 2021 UK rare diseases framework embodies our commitment to this issue. The framework sets out our vision of how to improve the lives of people with rare diseases through four vital priorities: helping patients get a final diagnosis more quickly, increasing awareness among healthcare professionals, better co-ordination of care, and improving access to specialist care, treatments and drugs—many of the things that have been mentioned during the course of the debate.

The framework was established thanks to the National Conversation on Rare Diseases survey, which received thousands of responses from the rare diseases community about the issues that matter most—the same issues that we have heard about today. These continue to drive forward our focus on UK-wide improvements, putting patients’ voices at the heart of decision making and the policy development underpinning all our work.

To deliver on our ambition, all four nations have now published rare diseases action plans, which set out how they will deliver the aims of the framework in ways that work for the specific populations and healthcare systems of each nation. I was pleased to be able to publish England’s second rare diseases action plan last week, on Rare Disease Day. This publication allowed us to reflect on some of the progress made during the last year.

The hon. Member for Strangford raised the case of his colleague who developed Miller Fisher syndrome and the experience she faced in receiving a diagnosis. It sounded unbelievably frightening for her—going into hospital with those symptoms and the several days she spent waiting for a diagnosis, hearing people around her talking about all the possible things she might have. I was very glad that she was diagnosed, and I hope she has made a good recovery. That case demonstrates the known problem that rare diseases can be hard to diagnose.

In our latest action plan, we report on some of the progress made on diagnosing rare diseases. Genomics England has developed a clinical research interface, which has helped identify over 1,000 new complex diagnoses for people with rare diseases. One illustration of the real-world impact of those developments is the 19 new diagnoses of Rett syndrome in 2022. Rett syndrome is a debilitating rare condition found in children that can be complex to diagnose. Those new diagnoses have helped to explain symptoms and enabled children and their families to access care.

The hon. Member for Strangford also highlighted the need for awareness of rare diseases among healthcare professionals to avoid delayed diagnosis and treatment. Over the last year, we have also made progress in increasing awareness of rare diseases. For example, Health Education England has developed GeNotes, a set of innovative educational resources on genomics and rare diseases, which will help put information at the fingertips of healthcare professionals. We continue to take steps towards improving co-ordination of care—addressing the point that the hon. Member for Blaydon made—through the roll-out of a toolkit for virtual healthcare consultations. This helps people with complex, multi-system rare diseases access multiple specialists on one call without needing to travel.

On treatment, significant progress has been made in improving access to specialist care, treatment and drugs. The hon. Member for Strangford rightly highlighted the emerging potential of cell and gene therapies for treating some rare diseases. The innovative medicines fund was launched by NHS England and NICE, to fast-track the most promising, cutting-edge medicines to NHS patients. Together with the early access to medicines scheme and the innovative licensing and access pathway, this will support early access to novel treatments. I assure the hon. Member for Enfield North (Feryal Clark), who asked about it, that the innovative medicine fund is open for applications for treatments for rare diseases. We also continue to monitor access to high-cost treatments for rare diseases across England, taking steps to ensure equal access to treatment across the country.

As the many stories shared today have highlighted, there is still much more to do. That is why England's second action plan sets out 13 new commitments to ensure everyone living with a rare disease gets the treatment, care and support they need. That includes a greater emphasis on co-ordinated access to specialist health and social care, including mental health and special educational support. Again, that addresses some of the points made by the hon. Member for Blaydon.

The hon. Member for Strangford raised the impressive research that has led to the development of the smart suit, helping young people with Duchenne muscular dystrophy maintain the use of their arms. It is truly an exciting and wonderful thing to talk about. The 2023 action plan also emphasises the importance of research to translate scientific breakthroughs into cutting-edge diagnostics and treatments. In August, we announced £12 million of funding to support the UK rare disease research platform, which will accelerate the understanding, diagnosis and treatment of rare diseases. A £790 million investment from the National Institute for Health and Care Research in biomedical research centres will also support rare disease research.

[Jim Shannon]

I am very conscious, Minister, that my knowledge of that smart suit simply comes from watching BBC 1 before I left the hotel one morning. It was a mum who, on behalf of her 13 or 14-year-old son, managed to get lottery funding of £1.25 million. She was the lady who developed the smart suit; she is not just a mum, but obviously much more, as she was able to do that. The Minister may not know, but could she come back to us on whether, now that it has been developed and the plans for the smart suit are there, it is possible that other people with Duchenne muscular dystrophy could also take advantage of it?

[Helen Whately]

As the hon. Member described, it is fantastic that a mum who saw the problem and the opportunity came up with a way of helping. I will have to write to him to answer his question. I assure him, and everyone present, that we will take further steps to make it easier for the rare diseases community to participate in research. That is exactly the point. It is very important that those most affected—the individuals and their families—are involved in research and innovations, such as the one the hon. Gentleman described. We will continue to improve the use of securely held national datasets in research.

Our new plan seeks to reduce the health inequalities experienced by people living with rare conditions. The hon. Member for Strangford spoke of pemphigus vulgaris and its greater prevalence among some ethnic groups. That is one aspect of health disparities, but health disparities can be faced by all people living with a rare disease when they seek to access the services they need, and we aim to address that. Through NHS England’s Core20PLUS5 framework, we will help integrated care systems to address the health inequalities faced by people living with rare conditions.

Similar efforts are under way in all four nations of the UK. Although each nation is taking a distinct approach through its action plan to best meet the needs of its healthcare system and population, we continue to work closely across the four nations to ensure that we learn from each other.

I assure the hon. Member for Strangford that I share his views about the importance of co-operation across the UK on rare diseases. The rare diseases advisory group at NHS England has membership from all devolved nations to ensure that it identifies and seizes opportunities for collaboration. Patients can move between parts of the UK to access specialist services.

The hon. Member for Blaydon mentioned the newborn heel prick, or newborn blood spot screening programme, and asked whether we could screen for more conditions, specifically spinal muscular atrophy, or SMA. We test for more than 30 rare conditions during pregnancy and the newborn period, and nine conditions via newborn blood spot screening. There is a good reason why we screen for fewer conditions in the UK than in other countries: it is because we believe that we have a more rigorous approach to evaluating the benefits, and also potential harms, of screening than other countries.

The 2022 rare diseases action plan committed us to establishing a blood spot task group to further develop the evidence base for newborn blood spot screening. The UK National Screening Committee has since established the blood spot task group, which is working to improve the evidence available to the screening committee when considering the screening programmes to be added to the blood spot.

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[Jim Shannon]

May I say a big thank you to everyone for their contributions? I was greatly encouraged by them. The hon. Member for Blaydon (Liz Twist) understand the issues well and has great knowledge of rare diseases, which is why she is the chair of the APPG on rare, genetic and undiagnosed conditions. The heel prick seems a very simple solution, and the Minister said she is prepared to review that. We take encouragement from her response; that is something that could be done easily.

The hon. Lady also referred to care co-ordination for learning and physical disabilities, and she gave the example of her constituent, Blessing. Care is so important because the whole family is part of the package. She referred to R&D—we all did, because we all recognise its importance; so does the Minister, to be fair. The Government have committed £12 million to that, so that is good news.

The hon. Member for Edinburgh North and Leith (Deidre Brock) gave a Scottish perspective. We often hear that, and it is important, because we all see the great benefits of the four regions working together. We all included that in our speeches. She referred to the smart suit—it is incredible what one lady could do. She also referred to the Scottish genomics strategy and the financing for it. That is an example of where Scotland leads the way—other hon. Members will have to forgive me, but it often does. She referred to a national register for data—that is good. She is absolutely right that we need money set aside, an action plan and better co-ordinated care.

I thank the hon. Member for Enfield North (Feryal Clark) very much for her contribution. There is nothing wrong with her memory, by the way. She referred to early diagnosis, and she welcomed the 2023 rare disease action plan. Sometimes, if we cannot find a cure, we can at least make the person’s quality of life better. We sometimes have to settle for less to get more, and in that one sentence the hon. Lady summed up what we are all about. It would be great to have the cure every time; that is not possible, but it is possible to make lives better. I thank her for that. She also referred to the need to skill up the NHS, and she gave the example of her wee constituent Lily—we heard what happened to her, and we all think of her. The hon. Lady also referred to R&D.

Last but certainly not least, I thank the Minister so much. It is a pleasure to come to debates—I mean this honestly, not in a condescending way—when the Minister understands the issues really well and responds to the questions we ask. She said she will look at the heel prick blood test to ensure we can solve the problem. She came up with ideas about new diagnosis, new treatment, specialist care, gene therapy, the £12 million of extra money set aside for research, and mental health and education support. Those are the things that we all asked for, and they were all in the Minister’s speech.

I am a great believer in the Union. I say that honestly; I am not trying to be political. It is clear to me that the four regions could come together as one and do it in a way that we all benefit from. Every one of our constituents, in Scotland, Wales, England and Northern Ireland, can benefit from what is being done in other places. It is really good to have that on the record.

I thank the Minister, hon. Members and the audience in the Public Gallery. I also thank you, Mr Sharma, for the way you chair our meetings, and the Hansard staff, who are very sympathetic and patient with my language.

Question put and agreed to.

Resolved,

That this House has considered patients with rare diseases.

Covid Pandemic: Testing of Care Home Residents

Jim Shannon Excerpts

Wednesday 1st March 2023 Commons Chamber

[Helen Whately]

As the hon. Lady says, care workers were among those on the frontline during the pandemic and they had some incredibly difficult experiences. They took the risk of catching covid and, very sadly, some care workers and NHS workers were among those who lost their lives. Others have long covid. The question of compensation is currently with the Department for Work and Pensions. The Minister for Disabled People, Health and Work, my hon. Friend the Member for Corby (Tom Pursglove), is in his place on the Front Bench: his Department is looking at this and will respond in due course.

[Jim Shannon (Strangford) (DUP)]

I thank the Minister for her answers. Everyone’s thoughts and prayers are with those who lost loved ones. The impact of the covid lockdown on mental health was felt most keenly in care homes. To see what the elderly people were put through, and learn that the full protections were not in place and they could not see loved ones at the end of life, is totally unacceptable. What would the Minister offer to those who lost precious hours with those they loved and adored on hearing this tragic news today?

[Helen Whately]

I reiterate to those living in care homes and their loved ones and families that the Government took every step throughout the pandemic to protect those we knew were vulnerable. For instance, we prioritised testing with more than 180 million tests going to care homes during the pandemic, and we prioritised vaccinations. I remember talking to residents in care homes at the time, and vaccination was a huge moment for them because it was the first time they had felt really protected from that cruel virus. I know how hard it was for families that they could not see loved ones in care homes, and that was one reason we put out guidance about visiting, saying that if someone was close to end of life they should be able to receive visitors. I will continue to do my utmost as Minister for Social Care to make sure that we do our very best for those living in care homes.