Hospice and Palliative Care

Jim Shannon Excerpts

Monday 13th January 2025 Commons Chamber

[Mr Kohler]

I agree with the hon. Lady, and I will be coming to those points.

Today is not about rehashing the arguments made that Friday, but to allow Members time to discuss and reflect on this separate, but inextricably linked subject. It is not the last word on hospice and palliative care, but an important step in forging a consensus that I hope will unite us, no matter where we ultimately stand on assisted dying.

I began by referencing the crisis in hospice funding. Before I proceed further, I echo what the hon. Member for Spen Valley said and thank the Health Secretary for the £100 million in capital and digital moneys he announced last month. It will make a profound difference to the sector’s current financial position. I have been asked by individual hospices and Hospice UK to convey their genuine gratitude. In a similar vein, the Government’s recently announced commitment to extend the children’s hospice grant by a further year is deeply appreciated and equally vital to maintaining levels of service in this heartrending, but profoundly important part of the hospice movement. However, these are only short-term fixes and fail to provide the long-term funding and certainty critical to securing the future of the hospice movement.

Currently, only one third of hospice funding is provided by the Government, with the rest coming from charitable sources. That leaves hospices vulnerable to increased cost pressures, as can be seen in a recent Hospice UK survey, which found that at least 20% of hospices had cut services in the past year or were planning to do so. Becca Trower, the clinical director of the wonderful St Raphael’s hospice, which provides excellent care to residents in my Wimbledon constituency, was unambiguous when she told me:

“We have a funding crisis and we need to protect our hospice.”

Last year, that meant that St Raphael’s was forced to strip £1 million from its £6.5 million budget by ending its hospice at home service that provided vital care, advice and support to patients and carers in their own homes. It was a virtual ward, in fact, but not one that fitted within the NHS definition of such, which would have attracted the separate integrated care board funding available for such initiatives. In just one month, the cuts to the service directly impacted 26 patients, many of whom spent their last days taking up valuable hospital beds, dying in the one place they did not want to die and putting further pressure on the NHS. When the Government are aiming to move medicine into the community, it makes no sense for hospices to be forced into a position that achieves the opposite.

That contradiction is mirrored in the current funding settlement, where the Government have given with one hand and taken with the other by increasing employers’ national insurance contributions. The refusal to exempt charities will exacerbate the challenges confronting hospices. The amazing Shooting Star children’s hospice, for example, provides wonderful support for families in my constituency. It estimates that the change will add another £200,000 to next year’s cost base.

Hospices need certainty. Doubts over funding undermine morale and sap energy, making the recruitment and retention of staff another huge issue for the sector. To address these problems, the Government need to introduce a consistent, reliable funding mechanism that reflects the rising costs of care. Hospices consequently need to be included within the NHS’s much-anticipated 10-year health plan. In parallel, staffing needs must be addressed in the next NHS long-term workforce plan.

It should not be forgotten that hospices provide a variety of services in addition to palliative care, including emotional, psychological and spiritual support, as well as physio and occupational therapy, practical support, complementary therapies, respite care and bereavement services. Much of that is beyond the clinical, and not something that the NHS can be expected, nor can afford, to provide. That is why no one I spoke to in the hospice movement thought that hospices should be subsumed within the NHS. They provide a complementary service that extends well beyond the clinical, and to which a charitable funding model is more effective and appropriate.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Gentleman on setting the scene so well. One of the concerns that I and others in the Chamber have is the impact on the workers in hospices. It is not just about the financial implications, which are all part of the overall issue, but burnout. Staff are working long hours. They are volunteers in many cases, and they do that because it is what they are committed to. Does he share my concern that burnout in hospice care will have an impact on the NHS in the long term?

[Mr Kohler]

I agree with the hon. Member. We need more palliative care specialists and we need more training, and there is a real danger of burnout.

It is not just hospices that provide palliative care. When talking to specialists within and beyond the hospice sector, I have been struck by their commitment to giving patients a good death and their frustration that so many do not receive one. A palliative care doctor recently told The Guardian:

“I sometimes see patients…who come into hospital in unspeakable agony and want their lives to end. It is not because their pain cannot be prevented, but because they are not getting the care they need.”

A local oncologist told me:

“Demand for services is simply outstripping supply. The majority of patients are not getting their end of life care wishes met. The specialist palliative care teams are very good but there are not enough of them and they do not have adequate resources.”

Huge regional inequalities exist in the provision and quality of services due to the vagaries of the current funding model. The Health and Care Act 2022 included for the first time a statutory duty for ICBs to provide palliative care. However, it did not include a minimum standard of core provision, leaving it to what each ICB considers appropriate.

Freedom of information requests submitted by Hospice UK in 2023 found that adult hospice funding consequently ranged from just 23p to £10.33 per head of population across different ICBs. For children’s hospices, the variations were even starker. Research from the amazing charity Together for Short Lives found that spending per child with a life-limiting condition varied from an average of £531 in Norfolk and Waveney to just £28 in South Yorkshire.

--- Later in debate ---

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak in the debate and to follow the hon. Member for Hartlepool (Mr Brash). I thank him for his personal story. Personal stories tell the story of the debate we have in front of us. During the last debate on assisted dying, the dire straits of our palliative care system were rightly put under the spotlight, so I am pleased to see this debate to address the system and the lack of funding.

I will refer to two charities in Northern Ireland that I have had contact with. One of them is Northern Ireland Hospice. It has highlighted that the Government fund approximately 30% of service costs, so the majority of its income relies on the good will and generosity of voluntary donations and other fundraising activities. That means 70% of the funding to provide its specialist palliative care for over 4,000 infants, children and adults with life-limiting conditions in Northern Ireland comes from the funding raised by volunteers. We owe a lot to Northern Ireland Hospice and its volunteers.

The people of Northern Ireland are incredibly generous when it comes to charitable giving, but when we take into account the cost of living crisis and the fact that it naturally reduces what people can give—it is a fact of life—we can see the concerns of the hospice sector. Indeed, when Northern Ireland Hospice believed that its funding would be cut by health trusts last year, it announced that it would have to cut the number of beds available in children’s hospices from seven beds all week round to six beds Monday to Friday and only three at the weekend, which represents a massive change in what it is able to do. That is not the news that we want to hear. It does not mean that fewer children need hospice facilities, but that costs have risen, the ability of fundraisers has decreased, and the Government have not enabled health trusts to make up the difference. Although I have underlined the situation in children’s hospices, the issue is replicated in adult care in every corner of the UK. The hon. Member for South Antrim (Robin Swann) is here. He is a former Health Minister of Northern Ireland, and whenever Northern Ireland Hospice needed help, he was able to allocate funding to get it over that hard patch. I thank him on the record for all that he did to make that happen.

Funding for palliative care is simply not sufficient. I referred to burnout when the hon. Member for Wimbledon (Mr Kohler) very kindly let me intervene earlier. Medical staff whose loyalty and passion for the job keeps them in post, doing overtime or working unpaid to provide cover, are exhausted and unable to carry on. Marie Curie says that one in four people will die without the right care and support. Far too many people are dying in avoidable pain, in poverty, and alone. By 2048, the need for end of life care will have risen by up to 25%, so the challenge for tomorrow is even greater than the challenge for today—over 730,000 people will need care every year. We know that that crisis is looming, and now is the time to make changes for our loved ones and our constituents. Like other Members, that is what I am asking the Minister to do.

--- Later in debate ---

[Stephen Kinnock]

The Government announced a commission on the future of adult social care. A separate commission was announced by my hon. Friend the Member for York Central (Rachael Maskell) on palliative care. We will certainly monitor the findings of that commission very closely.

We will set out details of the funding allocation and distribution mechanisms for both funding streams in the coming weeks.

[Jim Shannon]

In my contribution, I made the House aware that the Northern Ireland hospice has to cut its beds from seven to six for five days of the week, and at the weekend, there are only three. The Minister knows that I respect him greatly. It is all very well to have capital money available, but there has to be money to run the system and provide beds. Otherwise, we can buy beds, but might not be able to keep them and run a service. There must be something seriously wrong with what he is putting forward.

[Stephen Kinnock]

As I said in a previous answer, hospices face a range of pressures that financial contributions from the Government will help to ease. The funding will, of course, have a knock-on impact on hospices budgets in the round.

In spite of the record-breaking package that we have announced, we are certainly not complacent. There is more work to be done, and through the National Institute for Health and Care Research, the Department is investing £3 million in a policy research unit on palliative and end of life care. The unit launched in January 2024 and is building the evidence base that will inform our long-term strategy. A number of hon. Members requested a long-term strategy and plan, which is sorely missing after 14 years of Conservative neglect and incompetence. I agree that we need a long-term plan, and assure Members that conversations are taking place between my officials and NHS England. The research needs to be based on evidence and facts, which the unit will help us to get.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 7th January 2025 Commons Chamber

[Andrew Gwynne]

My hon. Friend raises an important point. As part of the Government’s health mission, we are producing a five-point plan for prevention, and alcohol harms is one of those areas. I hope to be able to update her and the House in due course on the actions we will be taking to drive down the prevalence of alcohol harms and other addictions, because they are costing lives and causing misery in communities. That is why this Government are determined to tackle these public health problems.

[Jim Shannon (Strangford) (DUP)]

I thank the Minister for his answers. While there are community addiction services for those over the age of 18, worryingly, across this great United Kingdom, those under the age of 18 are succumbing to alcohol addiction, too. There does not seem to be any provision for them. May I ask the Minister genuinely and helpfully what provision there will be for those under the age of 18, because addiction problems are rising among the younger generation?

[Andrew Gwynne]

The hon. Gentleman raises an important point. This Government are committed to having the healthiest generation of children ever. That means we will have a concerted effort on a whole range of health issues that determine the health and wellbeing of young people, which will hopefully ensure that they become healthy adults as a consequence. Alcohol harms are certainly one of the considerations we will be looking at.

Health and Adult Social Care Reform

Jim Shannon Excerpts

Monday 6th January 2025 Commons Chamber

[Wes Streeting]

That is an excellent question. Having put in place funding to ensure that there are 1,000 more GPs on the frontline before April, and having announced just before Christmas a significant uplift for general practice, I hope that in the first six months of this Government, we have sent the strong message to people who aspire to long careers in medicine that general practice has a huge role to play in the NHS in the 21st century. It is an exciting place to be, but I recognise that we have to fix the front door to the NHS to make it more attractive. The situation is even worse than my hon. Friend has described, because when the Conservatives left government, there were qualified GPs unable to find jobs, at a time when patients were unable to find GPs. We got to work on that issue within weeks of taking office, and we will do more over the next 12 months.

[Jim Shannon (Strangford) (DUP)]

It is good to hear the latest announcements on overhauling the increasingly costly care for older and disabled people, and I very much welcome what the Secretary of State has said. I understand that this will happen through a three-year review, and that we will be clearer on the plan to introduce this in 2028. Health is devolved to Northern Ireland, but thousands of care packages in Northern Ireland are not fulfilled. What can he do to assist Northern Ireland in achieving its goals? Goals that are set here for England and the United Kingdom need to be in place in Northern Ireland as well.

[Wes Streeting]

The ministerial team and I have enjoyed working with counterparts in the devolved Governments over the last six months, and we will continue to do that. Thanks to the decisions that the Chancellor took in the Budget, we see significant investment in health and care services here in England, and the Barnett consequentials will create a rising tide that will lift all ships across England, Wales and Scotland. I might even say that all roads lead to Westminster. I say this to Scottish National party colleagues: down the road to Westminster lie the resources for the SNP Government, so they do not have an excuse not to act.

NHS Backlog

Jim Shannon Excerpts

Monday 6th January 2025 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Lady on bringing forward this debate, and on being so consistent and assiduous on this issue. I understand that she will come on to the Lib Dem manifesto, which a lot of us in this Chamber, whether Lib Dem or not, can agree with. In Northern Ireland we have the health and social care board, which has been working on various strategies to reduce the backlog, but the scale is truly significant. Does the hon. Lady agree that, collectively, England, Scotland, Wales and Northern Ireland should look at all the recommendations and bring them together so that this great United Kingdom of Great Britain and Northern Ireland can benefit collectively?

[Helen Morgan]

The hon. Gentleman always makes an excellent contribution to our debates. He is right that we should look at best practice in Northern Ireland and the devolved nations, as well as in England, to get the right solutions for the problems that we face. I hope colleagues will forgive me as will not take any more interventions because we are tight on time and a lot of people want to speak.

We have reached a point where patients suffering heart attacks are being advised to find their own way to hospital. How can that be acceptable? Once patients get into A&E, they are confronted with the brutal reality of the backlogs. The reality means that only half of patients arriving at A&E in Shropshire were seen within four hours in November. The statistics are shocking, but individual people with serious problems suffer as a result—people such as my constituent with a pericardial effusion, who was deemed fit to sit and left in a chair for more than 24 hours before finally being taken on blue lights to receive the care she needed.

Staff in this situation are so overworked that the standard of care that they give is below what they would like to provide. The patient’s dignity is compromised, and staff are being driven from the service because they are unable to provide the care that they desperately want to. Until the Government put a plan in place to solve the workforce crisis, there is a risk that these scenes will continue to happen. In my local hospital trust alone, a total of 854,839 hours of nursing shifts went unfilled in the 12 months to October.

Liberal Democrats are calling for a qualified clinician in every A&E waiting room to ensure that anyone whose condition is deteriorating is treated more urgently. We are also calling on the Government to publish accessible localised reports of ambulance response times so that the delays that blight places such as North Shropshire and other rural areas can finally be addressed.

A key reason for the emergency backlog is that every day, around 12,000 hospital beds are filled with patients who could leave if they had a care package in place. That is the equivalent of around 26 hospitals being out of action every day. That is why Liberal Democrats have been banging the drum for social care. Without capacity in the care system, beds will remain blocked, A&Es will stay clogged and ambulances will continue queuing outside hospitals.

I am pleased that the Government have finally listened to our call for cross-party talks to fix a broken care system, and I look forward to constructively engaging with them throughout that process, but we cannot afford to wait three more years for this plan to be enacted. I hope that the Government will reconsider their timescale and get the review done as soon as possible, so that the care sector can see the long-term cross-party commitment to reform that it so drastically needs.

Part of solving this issue is supporting preventive measures, which stop people needing secondary care in the first place. I recently visited the North Shropshire charity Energize and saw the work of its Elevate programme, which works to improve fitness, balance and co-ordination in elderly and frail patients. It has had some amazing achievements: I met a gentleman suffering from Parkinson’s who had been falling five times a week before he started his programme, and who is now falling only once a week. Of course, it would be great if he did not fall at all, but I am sure everybody would agree that that is a huge improvement. It is estimated that for every £1 invested in that programme, £26 is saved, so it is an area where we can really make a difference to the crisis in the NHS.

Few backlogs have as much impact as those in cancer diagnosis and care. Nationally, the target of 85% of patients receiving treatment within 62 days has been missed every month since December 2015. At my local hospital trust, fewer than two thirds of patients began treatment within the 62-day target. Improving this situation is integral to increasing survival rates. It is also key to restoring patient faith in the NHS, stopping cases like that of my constituent, whose family felt completely failed by the NHS after he waited almost a year for treatment after first presenting with bowel cancer symptoms. Could the Minister clarify whether the Government remain committed to meeting the cancer waiting time targets this Parliament, as promised in their manifesto, and whether those targets will be included in their new national cancer strategy?

To achieve that improvement, we need to address key workforce issues, notably in radiology, where there is a 31% shortfall of consultants across the country. Again, in rural places such as Shropshire, it is recruitment and retention issues that have caused the sharpest problems. Throughout 2024, it became normal in Shropshire to wait months for cancer test and scan results, with patients in my constituency only receiving their results after their next scan was due to have happened. I am pleased to report that under new management, this backlog is now in the process of being cleared. However, that is happening due to overseas outsourcing, which is not a sustainable long-term solution for this country. We need to retain, recruit, and retrain more radiologists and ensure that enough modern equipment is in place across the country so that no one has to wait too long or travel too far to get the scans that they need. Will the Minister address whether that will also be part of the national cancer strategy?

We cannot talk about backlogs without talking about mental health. According to the Darzi review, 1 million people were waiting for mental health services by last April, over 340,000 of whom were children—children whom we as a nation need to protect, because they are our future. Waiting times for child and adolescent mental health services are shocking in every constituency in the country; from ADHD diagnoses to anxiety, depression and eating disorders, far too many people are not getting the urgent support that they need. A headteacher of a school in north Shropshire told me that in recent years, nine students at his school have lost a parent to suicide, yet there are no community mental health services in the town.

Along with the Government, Liberal Democrats would introduce a mental health professional in every school. However, we are also calling on the Government to improve early access to mental health services, and to cut mental health waits by establishing mental health hubs for young people in every community and introducing regular mental health check-ups at key points in people’s lives when they are accessing the NHS, so that we can pick up those problems and intervene early.

Meanwhile, GP surgeries are also struggling to handle the growing pressure being exerted on them. More than a million patients who tried to contact a GP last year could not get through. If patients cannot access primary care, they seek help elsewhere, or they do not seek help at all; in both cases, this creates further problems down the line. In Shropshire, we have lost 14.3% of fully qualified GPs in the past eight years. A young constituent of mine had to wait seven weeks just for a telephone consultation—a wait that would have been even longer if they had wanted an in-person meeting. Liberal Democrats would give everyone the right to see a GP within seven days, or within 24 hours if it was urgent, using 8,000 more GPs. If we can improve primary care, we can reduce backlogs across the health and care system.

Yet the Government have pledged to increase national insurance charges that could cost GP surgeries the equivalent of 2 million appointments a year. This hike will also hammer pharmacies, with more than a third of pharmacy owners now worried that their business may not survive the winter. If pharmacies close, backlogs will simply increase elsewhere. If we can keep them open and improve services such as Pharmacy First, we can reduce pressure across the system. We would like the Government to commit to removing the increase in employer national insurance contributions to support these crucial community services, so that fewer people end up in hospital and more people are treated in the community, where they will get better and quicker treatment.

Meanwhile, in dentistry, where practices will also be hit by the national insurance rise, there is not so much a backlog of care as an absence of care. Some 6 million adults in the UK are not registered with an NHS dentist and, in places like Shropshire, it is becoming almost impossible to find one, with increasing numbers of practices handing back contracts that have become unsustainable. One of my constituents has been trying to register with an NHS dentist for five years, while another pulled out his own tooth with a pair of pliers.

The Labour Government must show that they understand the problem better than the Conservative Government, whose solution was to introduce golden hello payments. They have been in place in Shropshire for years and they have not achieved the desired outcome. With that in mind, will the Minister outline the Government’s plans in relation to the new patient premium and offer assurances to dentists that any changes will be communicated, so that practices can plan and prepare to best serve their patients? NHS contracts need to be reformed so that we can end the use of the term “dental desert”, end DIY dentistry and guarantee access to people who are in pain.

In conclusion, the Liberal Democrats believe that people should be able to take control of their own lives and their own health. That means everyone should be able to access the care they need, where and when they need it. We welcome much of today’s announcement on elective care, and we welcome today’s announcement on social care, but we are concerned that the decision to hike employer NICs could worsen the crisis in the NHS. Hitting GPs, hospices, dentists and social care providers with higher taxes makes no sense. The Treasury is giving to the NHS with one hand, but taking away with the other. We also want much faster action on social care. As I said, I look forward to engaging constructively with the Minister to come up with the consensus we need, but we cannot afford to wait until 2028 for improvements to be made.

The Conservatives’ legacy on the NHS is that it is on its knees. The Liberal Democrats understand that there is no magic quick fix to change that, but to give people the care they need and deserve we must look at the measures needed for the whole service, giving equal priority to both heart attacks and hip replacements.

Hospice Funding

Jim Shannon Excerpts

Thursday 19th December 2024 Commons Chamber

[Karin Smyth]

As the hon. Gentleman knows, this Government have allocated an extra £12 billion in this year for the health and care sector. The full allocation to cover the entire area of health and social care will be announced in the new year.

[Jim Shannon (Strangford) (DUP)]

It would be churlish of anybody in this Chamber not to welcome the money that the Government are setting aside. I thank the Minister and the Government for that announcement, but what discussions has the Minister had with Cabinet colleagues to secure exemptions from national insurance contribution hikes for hospice workers? I think of Marie Curie—I spoke about that charity yesterday in Westminster Hall, and the Minister probably has a Marie Curie in her constituency. We know what that charity does. Unlike the mainstream NHS, it will not be exempted, yet it carries out the end of life care that the NHS simply cannot provide. Further, what help will be provided to carers in the community? The withdrawal of their service would leave the care system decimated.

[Karin Smyth]

The hon. Member makes an excellent point about carers and their support. We made announcements about that in the Budget, and we will make more general announcements about allocations in the new year.

Community Pharmacies: Devon and the South-west

Jim Shannon Excerpts

Tuesday 17th December 2024 Westminster Hall

[Rachel Gilmour]

I agree that we need to do that as often as possible. I will move on to the workload. This is not a typical example: along with prescriptions, in Tiverton and Minehead each pharmacy conducted 398 flu vaccines on average during the 2023-24 season, higher than the national average of 355.

If Members are unfortunate enough to need their blood pressure checked, they can go to a pharmacy. Across the UK, 930,000 hypertension blood pressure checks are undertaken in just one year. With public health as a driving mission for the Government, I would hope that this was something they could support wherever it takes place. Pharmacies also offer a range of other clinical and public health services, including providing flu and covid-19 vaccinations, and if further services were to be commissioned from community pharmacies in the context of sustainable core funding, the sector could do even more to improve access to primary care.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Lady for bringing this debate forward. She has touched on the issue of funding. In Northern Ireland, we have already made that commitment as it is a devolved matter; an additional £15 million has been set aside for community and GP pharmacies, with extra money beyond April 2027. We all want to achieve what the hon. Lady wants, but does she agree that to achieve that the Government and the Minister have to invest accordingly?

[Rachel Gilmour]

I do agree. In addition to delivering formally commissioned services, pharmacies provide an alternative point of contact for the public for informal clinical advice. The 2024 pharmacy advice audit found that the average pharmacy carries out around 22 informal consultations per day, which is the equivalent of 1.3 million informal consultations taking place in community pharmacies every week.

Musculoskeletal Conditions

Jim Shannon Excerpts

Tuesday 17th December 2024 Westminster Hall

[Sonia Kumar (Dudley) (Lab)]

I beg to move,

That this House has considered the diagnosis and management of musculoskeletal conditions.

I am grateful for the opportunity to have this debate. As chair of the all-party parliamentary group on osteoporosis and bone health, and as an advanced practice physiotherapist and first-contact practitioner, musculoskeletal health is my speciality. I am here to discuss the provisions needed to improve the diagnosis and management of MSK conditions.

My experience as an advanced practice physiotherapist is very much autonomous. I do not think many people know that physiotherapists work from paediatrics all the way to elderly care—from nursery all the way to palliative care. Most people do not know the work of a first-contact practitioner, which is a new service in which physiotherapists work with GPs to diagnose, assess and refer to secondary care, if needed. I was part of that vital service at Dudley Group hospitals, so I declare my interest as working on the bank there.

MSK physiotherapists work not only across hospitals and primary care but also in tertiary care. They work in fracture clinics, rheumatology, pain management and A&E. Not many people realise what we do. MSK physiotherapists are the specialists and experts in musculoskeletal diagnosis. That could include referring people for X-rays to look for suspicion of fractures or for MRI scans to look for sinister pathology, a differential diagnosis, masqueraders that look like Pancoast tumours, metastases or spinal or multi-joint cysts. Along with ultrasounds, guiding injections and prescribing, the scope of physiotherapists has expanded year on year, to a point where they are now specialising and moving their practice on to do simple surgeries, such as carpal tunnel releases.

I look not only from a diagnostic point of view but at the importance of managing MSK conditions, including in respect of rehabilitation.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Lady for securing this debate. There have been some worrying trends in the press in the last six months, in relation to children as young as 11. Does she agree that the NHS plan for change over the next five years is necessary, given that children as young as 11 are being diagnosed with arthritis? We need help and guidance for those whose lives might be impaired from an early age right through to older life, and who need coping mechanisms. The importance of this debate cannot be underlined enough.

[Sonia Kumar]

I agree with the hon. Gentleman. I have worked in paediatrics where many patients get diagnosed late and suffer with late onset. That affects their whole life from the beginning, including their ability to get involved with physical activity and to build relationships, or their mental health and sleeping patterns. Getting an early diagnosis is one of the solutions I want to put forward. I would like the Minister to consider involving physiotherapists from early on, at nursery stage, to find out why we are not picking up MSK conditions from a really young age so that we can provide health and wellbeing from day one.

Dental Healthcare: East Anglia

Jim Shannon Excerpts

Wednesday 11th December 2024 Westminster Hall

[Jerome Mayhew (Broadland and Fakenham) (Con)]

I beg to move,

That this House has considered dental healthcare provision in East Anglia.

It is lovely to see you in the Chair, Mr Dowd. I am grateful to colleagues from East Anglia for supporting this debate and, I hope, making some interventions. I am also grateful to the Minister for Care for coming yet again to Westminster Hall, because this is not the first time that we have had a debate on dentistry in the east of England, and in East Anglia in particular. The reason for those numerous debates is the significant problem of access to NHS dentists in particular, but also to private dentists.

Peter Aldous, who I am sorry to say lost his seat at the recent election, was a doughty campaigner on the issue. I pay tribute to him for the numerous debates he brought forward. Most recently, in September, the hon. Member for Norwich South (Clive Lewis), who is not here today, held a debate on the topic. Time is short, so I will not focus on the need as much as I normally would, but the Minister has been here before and knows very well how significant the need is for increased access to NHS dentistry in East Anglia.

I will give highlights, however, because the Secretary of State for Health and Social Care has described Norfolk not only as a dental desert, but as the “Sahara of dental deserts”. The Minister—the noble Baroness, Lady Merron—confirmed in the other place on 25 November that the Norfolk and Waveney area has

“the worst ratio of NHS dentists to patients in England”.—[Official Report, House of Lords, 25 November 2024; Vol. 841, c. 479.]

In my last debate in this forum, I was shocked to report that in Norfolk and Waveney the ratio of dentists per 100,000 population was 39, when the national average was 52. Now I have to update those figures, because the Secretary of State has recently confirmed that the figure of 39 has dropped to 36 per 100,000 of population, while the national average has increased to 53. It is getting worse, not better.

The data from this month is even more concerning. The British Dental Association confirms that there are 3,194 NHS dentists in the east of England, which are the statistics we previously used. BDA’s further analysis last month reveals that that equates to just 1,096 full-time equivalent dentists in NHS roles. If those figures are run through the population, there are 17 full-time equivalent NHS dentists per 100,000 population in the east of England. Those are truly shocking figures.

The issue can be sliced and diced in another way. The amount of money that the Government spend on people’s mouths in the east of England makes for sobering reading. The national average is £66 per mouth spent on dental treatment by the NHS. In the east of England, that figure is just £39. What is it? Is it that our fillings and dental work are cheaper in the east of England, or are we doing less? It is not due to less demand; we have the greatest demand. We had more than 1,000 people presenting in the past year at NHS A&E with significant dental problems. I believe I am right in saying that dental concerns are the single biggest reason why primary school children present at hospitals.

[Jim Shannon (Strangford) (DUP)]

On that critical point, dental care must start in primary school. When I was at school—that was not yesterday, of course—they came in to check the children’s teeth. We had that the whole way through, but that process is missing today. Does the hon. Gentleman think that primary school should be the first stage of response?

[Jerome Mayhew]

This debate is about the east of England, not the east of Northern Ireland, but I will take the hon. Gentleman’s intervention anyway. He is right that we learn our oral hygiene habits as children. It is primarily the responsibility of parents to look after their children’s oral health, as well as their general health; that has always been the case, and that should always remain the case. However, we recognise, as did the last Administration, the increasing role of primary schools in reinforcing the role of parents.

Puberty-suppressing Hormones

Jim Shannon Excerpts

Wednesday 11th December 2024 Commons Chamber

[Wes Streeting]

I can certainly give my hon. Friend that assurance. We want all trans people, in fact all people in our country, to receive timely access to safe and effective healthcare. We want to improve services for trans people specifically, because we recognise the extent to which they have been let down. I emphasise that young people who have been in receipt of puberty blockers with a valid prescription for the six months prior to 3 June and 27 August respectively can seek continuation of their prescriptions. There are risks that would be associated with an interruption of those prescriptions, which is why we have taken that approach. I know that I speak for the Government as a whole in saying that whether it is access to healthcare as in my case, access to a wide range of public services, or indeed safety on our streets, this Government are committed to improving the lives of trans people so that they can live with the freedom, dignity and respect that any of us in our country would expect for ourselves.

[Jim Shannon (Strangford) (DUP)]

I very much welcome the Secretary of State’s statement. It is never easy to deliver a policy decision that has so much effect on people, and I admire him for his diligence and his courage. He will be aware of the findings of the Cass report, which found that the change in practice from psychological and social support to drugs was based on no good evidence. In the light of medical professionals highlighting that puberty blockers by definition disrupt a crucial natural phase of human development, does the Secretary of State believe that we must extend the ban from temporary to permanent, not only to protect our children, but to prioritise mental health and the support that they so desperately need?

[Wes Streeting]

I am grateful to the hon. Gentleman for what he said. These issues weigh heavily on my conscience. On what he says about the safety and efficacy of puberty blockers, the simple fact is that we just do not know enough. That is why building the evidence base and research is important. I want to ensure that young people with gender incongruence and dysphoria are receiving the best quality healthcare to improve their safety, welfare and wellbeing as children, and that they live long, healthy and happy lives as adults. That is the basis on which we are taking decisions, and we are approaching the issue with care and sensitivity, as I know my counterpart in Northern Ireland also does.

Rare Autoimmune Rheumatic Diseases

Jim Shannon Excerpts

Tuesday 10th December 2024 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered rare autoimmune rheumatic diseases.

It is a pleasure to serve under your chairship, Dr Huq. I have done so many times, and it is always a pleasure to be here and to see you fully in control. It is also a pleasure to see the Minister in his place. I was hoping that it would be this Minister, so when he walked through the door, I was especially pleased to see him in person. By the way, I would have been pleased to see any Minister—I do not want to offend anybody. The shadow Minister, the hon. Member for Hinckley and Bosworth (Dr Evans), is in his place as well. He and I talked last night about this issue.

This debate is, by its very nature, a niche debate. Dr Huq, if you have a constituent who has an autoimmune rheumatic disease or you know somebody with one, you will be here to represent them, but not everybody has, because only a small number of people across the United Kingdom of Great Britain and Northern Ireland have one of these diseases. However, I look forward very much to having the debate.

I was chatting beforehand to the Liberal Democrat spokesperson, the hon. Member for Mid Sussex (Alison Bennett), and she was telling me—she will refer to this herself when the time comes—of the important case of her constituent, a good friend. I will leave it to the hon. Lady to put forward that case.

I have always had a deep interest in any health issues. I am my party’s health spokesperson, and if there are any health debates anywhere, in Westminster Hall or in the main Chamber, I make it my business to attend those debates and to contribute to them, whether by speeches or questions. That is really important. I have a particular interest in rare diseases, and that came through a constituent who lives down the Ards peninsula. I have probably known him all his life. When you get to my age, Dr Huq, there are many people you have known all their lives; that is just a fact. The point is that he married a young girl from the area. She had a rare disease, and my interest came through contact between her and the family and me across the Ards peninsula. Across Strangford, this became a massive issue, and that lady and that family today fly the flag for rare diseases in the Ards peninsula and in Strangford.

I thank the Backbench Business Committee for granting this debate. I think we start from the NHS point of view. I am an advocate for the NHS—always have been and always will be—as we all are in this House. I am one who believes in the foundation of our NHS and the people who hold it together—the people whom we may not meet, but who are the glue and the gel that keeps it going and keeps it together. I am aware of the stress and strain on the NHS, and give my full support as the Government attempt to make the changes that are necessary for the NHS to survive. I very much welcome the Government’s commitment. I think they have committed £26.3 billion to the NHS, and that is a massive contribution. It shows confidence on the part of the Government; we welcome that. My starting position is praise for the people behind those three little letters, N-H-S.

We are beginning to look at NHS restructuring—the Secretary of State has confirmed that, and the Ministers are all committed to it. There are lots of priorities that the Government have to get to, but amongst that is the restructuring. A vital component is that the NHS provides high-quality, equitable care for all people, regardless of how rare or complex their condition is. If you—when I say “you”, Dr Huq, I really mean me or anyone else across the United Kingdom—do not have a rare disease, you may not understand what it means to have one, and how rare or complex a particular condition is, but that tells me that we need to be aware of this issue. We need to reach out and we need to help. The Government have a commitment to rare diseases as well. Although they may not be mathematically or statistically numerous, they represent individuals, families—relatives—and friends, who all understand the issue very well.

I have been interested in rare diseases since I was in the Northern Ireland Assembly, before I came here. We had contact with ladies down the Ards peninsula who were very much aware of rare diseases and the issues, so we started a rare diseases group in the Assembly, which we have continued here over the years. I will use this opportunity to speak on their behalf about some complex, rare diseases—rare autoimmune rheumatic diseases.

[Mr Gregory Campbell (East Londonderry) (DUP)]

I congratulate my hon. Friend on securing the debate. Does he agree that because so few people are impacted by rare diseases, raising awareness among health professionals is a key aspect of helping those people, who may often feel overlooked simply because of the very small number who come into the ambit of the subject matter we are discussing?

[Jim Shannon]

As my hon. Friend often does in these debates, he brings forward a reminder of why this debate is important and why we need to raise awareness. It is about giving confidence to people out there who may have these diseases and may think that they are fighting this battle all on their own, but are not. We need to raise awareness among NHS staff. It is impossible to know about every rare disease, but it is good to recognise the symptoms and to be able to point people in the right direction.

Rare autoimmune rheumatic diseases are a range of chronic, currently incurable conditions in which the body’s immune system damages its own tissues, often in multiple organs throughout the body simultaneously. That is a lot of words but, to use a phrase that we would say back home, it means that they come at a person from all sides. They can lead to tissue or organ damage that, in some cases, can be fatal. We cannot ignore the fact that that can be fatal and the importance of responding in a positive fashion.

At present, the outcomes are not good enough for people living with rare autoimmune rheumatic diseases: they wait too long for a diagnosis, have variable access to specialist care and cannot always access help and support when they need it. In any debate that we have about ill health, we often say that early diagnosis is important, but so is having access to specialist care. It is important that NHS workers are able to notice something that may be unusual and not something that they see every day. It is also important that the care, help and support that people need is available when they need it. Preliminary data from the Rare Autoimmune Rheumatic Disease Alliance’s soon-to-be-released 2024 patient survey found that the average time to diagnose from symptom onset was two and a half years—it is that long before anything happens. In those two and a half years, people suffer, worry themselves sick and wonder, “Am I going to get out the other side?” The data shows that 30% of patients waited five years for a diagnosis from symptom onset.

Rare autoimmune rheumatic diseases impact on around 170,000 people in the United Kingdom of Great Britain and Northern Ireland. Hon. Members may not recognise some of the diseases, but they include Behçet's disease, lupus, myositis, scleroderma, Sjögren’s syndrome and vasculitis. They can affect many parts of the body—the joints, the skin, the lungs, the kidneys or the heart—and often require cross-medical expertise. That is just a small number of the things that come the way of 170,000 people across the United Kingdom. Unlike the vast majority of rare diseases, the conditions occur predominantly in adult life and are predominantly non-genetic. That means that people do not need to have a history of them: they can come out of the blue.

The Rare Autoimmune Rheumatic Disease Alliance, a group made up of clinicians and charities, such as Lupus UK, Vasculitis UK, Scleroderma & Raynaud’s UK and Sjögren’s UK, has set out a number of key solutions to improve care for RAIRDs. They include strengthening existing specialised networks and setting out what good care looks like through a rare disease equality standard. It has also stressed that it is vital that rare disease is not forgotten in upcoming policies such as the NHS’s 10-year plan, which I will refer to later. In that plan, it is really important that we—by which I mean the Government and the Minister—can give hope to people who suffer from those diseases, and it is really important that they do not think they are on their own. The evidential base response from the Minister would give them that assurance, and it is important that the progress made to date by the UK rare diseases framework is built on. That is my first question: is the rare diseases framework part of the NHS 10-year plan?

I want to share an example that has been highlighted to me of someone who has felt the personal impact of rare autoimmune rheumatic disease. Zoi lives with a life-threatening RAIRD, granulomatosis with polyangiitis vasculitis. In her words, she is “lucky” because she had a relatively short journey to diagnosis. When she looks at others, she thinks she is lucky. I would like everybody who suffers from these diseases to have the same luck—if luck is the word. I do not believe in luck; my personal opinion is that everything is predestined. I am interested in how we make it better.

The quick diagnosis came only because Zoi’s GP recognised her symptoms and knew to refer her right away. Does every doctor have that knowledge? I hope they have, but they might not have the personal observation of that doctor. The difference was that he had had a friend who had died of the disease, so he knew what to look out for and red-lighted those symptoms.

Despite Zoi’s positive experience of diagnosis, however, her experience of care since has been variable—that is the second stage. Following diagnosis of the disease, the care system works its way out. She has faced long waits for appointments and poor communication between teams responsible for her care. In one instance, she received a letter from a consultant four months after the date of the appointment. Was that the fault of the Royal Mail? I do not know. It was not Zoi’s fault that she did not know about the appointment until it was too late. It meant that she had been taking a medication unnecessarily for months longer than needed.

It is about early diagnosis, treatment going forward and speed and urgency in the process to make it happen. Zoi works for a charity that supports other people living with vasculitis. She describes it as “heartbreaking” that hers is one of the best diagnostic journeys one will hear of. She has been diagnosed and gone through the NHS process to get out the other side and try to be better. As she says, hers is one of the best diagnostic journeys, but how can the rest be improved?

How do we improve care? Speedy diagnosis should not be down to Zoi’s word “luck”. People such as Zoi living with serious rare diseases should be able to access vital care when they need it. That is why I am calling on the Minister to consider the following recommendations advocated by RAIRDA. It is important to be aware of the issues.

The first recommendation is to ensure that rare diseases are a focus of the NHS 10-year plan. I am always pleased to see the Minister in his place. I mean that genuinely, not to give the Minister a big head. He comes with an understanding that we all greatly appreciate— I do and am sure everybody else does. Will there be a focus in the 10-year plan on rare diseases? I am pretty sure the answer will be yes, but we need confirmation of that in Hansard today. We need to reassure our constituents who are struggling with disease and are unsure what the future means for them.

The UK rare diseases framework, introduced just three years ago in 2021, has been a significant step forward in securing equity of treatment for rare diseases. I welcome that, but sometimes the system does not work as well as it should. It is crucial that the Government do not lose sight of the work done to date to drive change for people living with rare conditions. Good work has been done, and I always like to recognise good work. It is important that we give encouragement to those who are working hard, and it is important sometimes to think, when we are ploughing away, what we are getting for it. Many of us—all of us in this room, for instance—appreciate what our NHS does. The good work that has happened for those with rare conditions needs to continue with the same zest, enthusiasm and fervour as it has done in the past.

It is particularly important that the working groups on the NHS 10-year health plan consider how improvements in rare disease care will be championed in that plan. In addition, it is important that the plan considers how the work plan of the UK rare diseases framework will be continued past the framework’s end point in 2026. That is my second ask. I am sure that within the 10-year plan the Government are committed to that continuation, but I need to personally reassure my constituents and we need to reassure the nation. We need to reassure those 170,000 individuals and their families and friends.

The framework has been an important tool in co-ordinating methods to improve care for rare diseases, and not just in England. I understand that health is a devolved matter, but this is how it works: whatever happens here, health-wise, is the next stage for us back in Northern Ireland, through the Health Minister. I was talking to another Health Minister on the tube coming here, and we were saying how important that co-ordination across all four regions is. It is good to push for that here, and to see it received back home.

The framework has been an important tool in co-ordinating methods to improve care for rare diseases, not just in England but across the United Kingdom of Great Britain and Northern Ireland. The numbers of people suffering in Northern Ireland may seem small numerically, because we are a region of 1.9 million people, but the impact is huge. I am overtly aware that health is a devolved matter, but I am also aware that the standard can and should be UK-wide. The Minister always gives me and those from other parts of this great United Kingdom reassurance on the co-ordination between here and the Northern Ireland Assembly. I know he has met the Health Minister, Mike Nesbitt, and I am sure they will meet again in the foreseeable future.

How do we develop a standard of care? The National Institute for Health and Care Excellence quality standards consist of defined, measurable statements that can be audited to reduce variations in cases throughout the country. A rare disease quality standard would help to incentivise an increased focus on delivering high-quality care and treatment for rare conditions in the NHS, including rare autoimmune rheumatic diseases. That is my third ask: to develop the standard of care we need to have a quality standard, which would help to incentivise all the regions—all the parts of England, Scotland, Wales and Northern Ireland collectively; better together.

Work in this area is already well under way. RAIRDA has been working hard with organisations across the rare disease community to understand what good care looks like for people living with rare disease, and how that should be reflected in quality statements. Has the Minister had the opportunity to talk to the alliance? I am sure he has; I do not doubt that for a second. It would be good to have that liaison to help to bring together the ideas from the alliance and the Government. It is important that the current work to develop quality statements is built on in a timely way, with the swift development of a rare disease quality standard.

On my fourth request, it is clear that we need development in IT capacity in the fight for diagnosis, to ensure that more people can experience a quick diagnosis, like Zoi did. We need to increase funding for research into the diagnostic journey for rare autoimmune rheumatic diseases, to aid the development of diagnostic technology. It is really important that we look towards the next stage on research and development. How do we do that?

To sidestep slightly, today’s paper—I think it was the Express—said that the Government should be doing something to look at dementia as the numbers rise. Although we are talking about rare diseases that will be well down the Government’s to-do list, early diagnosis is important, as is research and development to improve the capacity to find a cure, to lessen the pain and to lengthen the time that people have in this world. Again, any indication of what is happening with research and development would be greatly appreciated.

Investment in research would help to identify blockers to rapid diagnosis, as well as supporting the development of digital tools for faster and more accurate diagnoses. Some months ago my colleague, the hon. and learned Member for North Antrim (Jim Allister), asked the Secretary of State for Health and Social Care a question in the Chamber about the report on the way forward for the NHS. He mentioned the need for digital data tools, and the Secretary of State replied very positively, so I think the Government are looking into this, but it is important that we have the digital tools in place. With better data and more accuracy, we can help to speed up the process and find a better way forward.

Because of their rarity, it is unrealistic to expect every hospital to have clinicians with expert knowledge of rare autoimmune rheumatic diseases. I understand that, as we cannot know everything. Clinicians may have a small portion of knowledge, but this subject requires expert knowledge, so we need another way of doing it. A 2024 survey found that 29% of respondents were not very, or not at all, confident that the specialist healthcare professionals providing their care understood their condition. How do we improve that? I understand that we are in difficult, financially straitened times, and the Government have rightly committed a large sum of money to the NHS and health services—as they should, and I support that entirely—but we need improvement. My fifth ask of the Minister is: how can we do better? If 29% of respondents are not very confident, or not at all confident, we need to address that.

I believe that improvement can be achieved by developing specialised networks for rare autoimmune rheumatic conditions. Such networks would allow health professionals to access the knowledge and expertise of tertiary specialists, while also developing the capability and capacity to provide more care and treatment locally. I feel that would be the answer to my fifth question, and I am interested to hear the Minister’s thoughts.

Networks already exist, with an excellent example being the Eastern Network for Rare Autoimmune Disease, established in 2016. We have a system in place, so let us look at it—not in a judgmental way—to see what it is doing and where improvements can be made. The network was formed to maximise patient access to relevant expertise while keeping their care as close to home as possible. This has been achieved by setting up excellent communication and cascading training to enable much better co-ordination, digital data sharing and contact between specialised centres and local trusts.

The network lead has calculated that the network’s creation has saved the NHS money, so it has to be considered. The network runs at a cost of between £70,000 and £100,000, but it has generated annual savings estimated at between £150,000 and £200,000. That means that for every £1 spent, the NHS has saved £2, over a seven-year period, through a reduction in the use of inappropriate high-cost drugs.

On my sixth ask, networks throughout the country, like ENRAD, are run on the good will of clinicians. That is not sustainable, and it never can be. I respectfully ask the Minister to perhaps look at the ENRAD scheme, which is run on the good will of clinicians and has been very effective in how it responds, to see how such networks can be better helped to expand. If it saves money—if every £1 saves the NHS £2—then the financial equation is clear, and it should be pursued across all of this great United Kingdom of Great Britain and Northern Ireland.

To address this issue, the Government must provide the necessary financial support for networks to be developed and maintained. That funding would enable the creation of vital posts, such as meeting co-ordinators, and allow clinicians to be reimbursed for their time. Again, I feel that would be the right incentive. Good will is good to have, and there is much of it across this great nation, but, at the same time, there may be better ways of doing things. Such support would ensure that benefits for patients, and the NHS’s budget, could be realised throughout the country. With the £25.3 billion committed to the NHS—I think that is the figure, but the Minister will correct me if I am wrong—this is another way to save money in the NHS, and it really should be done.

My last request is about specialist nurses, who can play a crucial role in supporting people living with rare autoimmune rheumatic diseases. The preliminary results from the 2024 survey show that respondents with access to a specialist nurse were more likely to report that they had access to enough information and support about their condition, compared with those who did not have any access to a specialist nurse. But less than three in 10 respondents—some 28%—had accessed information from a specialist nurse, and this varied widely by condition group. Wow: how important is the role of specialist nurses? I would be reassured if the Minister came back to me in respect of the critical role they play, perhaps exclusively. If only 28% of people have access to information from a specialist nurse and it should be more, what can be done to improve that?

Finally, when developing the NHS workforce plans, will the Minister consider what more can be done to recruit more specialist nurses to support people with rare autoimmune rheumatic diseases? We must always consider the fact that although the chances of getting a rare disease may be one in 10,000, the reality is that the patient deserves all the help we can offer, from diagnosis to treatment and support. I ask the Minister—very kindly, sincerely and humbly—to clarify whether that is this Government’s goal. I believe that it is, but it is not about me today; it is about the people we represent in this House, collectively, together, across this great nation. I believe we have an important role to play.

RAIRDA, with all the clinicians and all the charities, has brought together some positive ideas that can help us together. This is not about blame—it is is never, ever about blame; it is about how we do it better. On behalf of my constituents who have contacted me, and others who will speak shortly, and for the shadow Minister and the Minister, we put forward our case and look forward to support from Government.

[Dr Rupa Huq (in the Chair)]

I remind Members that they should bob if they want to be called in the debate.

--- Later in debate ---

[Jim Shannon]

I thank all hon. Members for their contributions. I refer first of all to the hon. Member for Bootle (Peter Dowd). It is always a pleasure to hear him make his contribution. Even when there are things that are said in other debates which I may challenge, he always delivers his contribution in a lovely way and not many people can do that. Today he delivered something that we all agree with. I thank him for that and I mean that sincerely, but he knows that. He referred to the effect upon the family. He is right, and also right that those who want to work are not able to. He said he did not want to see these diseases at the back of the queue and he is right on that as well. All those things are pertinent to the debate.

My hon. Friend the Member for East Londonderry (Mr Campbell) referred to awareness and training. Again, a very salient intervention for which I thank him. The Minister is right that there is no better way of telling a story than giving an example, and the hon. Member for Mid Sussex (Alison Bennett) told of her good friend, Carrie, and the effect upon her and upon her mummy as well. Sometimes they were wondering what it was all about when the condition worsened, and how the health service responds is critically important.

The shadow Minister, the hon. Member for Hinckley and Bosworth (Dr Evans), brings to any debate his wealth of knowledge—from his own personal experience and from his vocation as well—and he does so sincerely. He referred to the two groups: those with tissue and those with vasculitis. He referred to the vision for the rare disease framework and the new action plan. I did not previously know about the tie-up between Birmingham, Newcastle and Queen’s University Belfast for research and development and I was really interested to hear about it. I know about some of the things Queen’s University do but I did not know about that specifically and so I thank him for that, and for the wee reminder of how to get onto that as well. That has really been helpful.

I am encouraged by what I have heard today. I referred to research networks and support, and working collectively to make this situation better. Disease modification drugs need to be regulated. This is a wee reminder of some of the things to be done—it is not always straightforward by the way, either.

This debate was never about me or about any of us here. It is about patients and our constituents; about those who we serve in this place. Today I think the Minister has developed a very positive response. All of those out there—my constituents, and those of the hon. Member for Mid Sussex and of the hon. Member for Hinckley and Bosworth—will be encouraged, because they will be listening to this debate and they will want to know what the Government are going to do. They will be encouraged by the things the Minister referred to: highlighting the rare diseases, the personal stories, to raise awareness. That the diseases are rare but collectively they are common was a salient and poignant comment. On measuring and reporting progress, he referred to the 2026 end of the framework but the Minister gave us assurance—he referred to a mission and to contacting the four nations so they can approach it together and commit together. I think that is also an answer to one of the questions I asked. That is what the Minister has committed himself to doing and we should be reassured by that.

Diagnosis should be timely and accurate, and the Minister referred to GeNotes and the digital improvements. That is really important as well. He also referred to NICE, to encourage research and development for rare diseases because we have to look forward to someday hopefully finding a solution. He also referred to the ENRAD, which is a good model for all to follow. Government will put this idea to the fore, where there has been a good example. The Minister is right about the economic and health commitment for clinical trials, so that our patients win each time. He also made encouraging comments about training and workforce—early prevention, faster diagnosis, better outcomes. I think those who have rare diseases—170,000 across this great United Kingdom of Great Britain and Northern Ireland, and all the families of those people—will today be encouraged by this debate and the contributions from all sides. Most importantly, I say a sincere thank you to the Minister.

Question put and agreed to.

Resolved,

That this House has considered rare autoimmune rheumatic diseases.