Access to Migraine Treatment

Karin Smyth Excerpts

Wednesday 20th March 2024 Westminster Hall

[Karin Smyth (Bristol South) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Mundell. I thank the hon. Member for Bishop Auckland (Dehenna Davison) for opening the debate and sharing her personal experience of how the condition has affected her, which was very powerful for others to hear. We have heard some fantastic contributions today. We know that one in seven people in the UK are living with migraine, and that women are disproportionately affected. I agree with the Chair of the Women and Equalities Committee, the right hon. Member for Romsey and Southampton North (Caroline Nokes), that this needs to be addressed. Women are under-represented in research and development more generally and we need to understand why—beyond reproductive issues—in the women’s health strategy.

Migraine attacks can be hugely debilitating. They can last between four and 72 hours or even longer, often causing pain, vomiting and dizziness. We have heard from the right hon. Member for Romsey and Southampton North about the impact on children, and very movingly from the right hon. Member for South Staffordshire (Sir Gavin Williamson) about the all-consuming impact on family life. They affect every part of life, including social life, education and employment, yet they are often misunderstood and under-diagnosed.

Migraines affect people’s ability to access full employment, with 29% of those who suffer reporting that they have had to move from full time to part-time work, and a further 25% having left a job altogether. People listening to this debate who might think they are in control of their careers—maybe even at the Dispatch Box—will find it very powerful to understand that they are not alone. This adds to the number of people who are economically inactive because of long-term sickness, which has risen to more than 2.5 million—an increase of more than 400,000 since the start of the pandemic. That has a huge impact on our economy and on individuals’ health, wellbeing and ability to support themselves and their families.

I am deeply concerned that the measures laid out by the Government to tackle the leading health-related causes of economic inactivity are not ambitious enough. I join the former Chief Whip, the right hon. Member for South Staffordshire, in exhorting the Government to take greater action and governance. The Access to Work scheme faces huge backlog, so we want to hear from the Minister today what the Government can do to support those suffering from debilitating migraines and help them access work.

Furthermore, support from employers is vital to everyone living with chronic migraines. We have heard a debate about whether this should be considered a disability, but even those who are identified as disabled and are working for Disability Confident employers do not report much better experiences than those working for employers that are not members of that scheme. We need more action from the Government to ensure that disabled people and those with long-term conditions such as chronic migraine can access the support they need at work.

As with too many medical conditions, waiting lists are long. Once someone is diagnosed, it can take up to 29 weeks for them to access a neurologist or headache specialist. Fourteen years of Government mismanagement have left our NHS unable to deliver a full and comprehensive range of health services, which is impacting on care and treatment for migraines.

That is why Labour will build an NHS fit for the future, providing it with the staff, technology, resources and reform that it needs to improve patient care, cutting waiting lists and ensuring timely diagnosis and treatment for the millions of people affected by migraine by getting the NHS working around the clock. That will give staff the opportunity to earn more for working weekends and evening shifts. Getting local hospitals working together will mean that the NHS can deliver the extra 2 million operations, scans and operations a year that are needed. What measures will the Minister take to tackle those waiting lists, particularly the services around neurology?

We have heard today how new treatments can give hope to those suffering from migraines. CGRP antibody medicines have been approved by NICE to prevent migraine in adults. However, as we have heard, only 52% of sufferers are offered them; people have to take a long route before becoming eligible. NICE last updated its guidance in this area in 2021. I would be interested to hear whether the Minister is having further discussions with NICE about ensuring wider access to migraine treatments.

Migraine is a condition that can be isolating and debilitating. We know that pressures on mental health services are acute, but with 78% of respondents to the Migraine Trust’s survey saying that migraine impacts their mental health and 65% reporting that they have experienced anxiety as a result of migraine, it is vital that we consider the mental health impacts of living with migraine.

I am keen to see Labour’s proposals for a whole-Government strategy to improve mental health outcomes and make early interventions becoming a reality for people. That is why the next Labour Government would implement an ambitious plan to cut waiting lists by recruiting over 8,500 additional mental health staff, providing access to mental health support in every school and delivering an open-access mental health hub for children and young people in every community. That would help to redress the current situation in which young people and children do not have sufficient understanding of the debilitating effects of this illness.

Finally, further research into migraine is really important, because we still do not fully understand what causes it; the SNP spokesman spoke very eloquently about the need for research into its causes. We would support our research community with a new regulatory innovation office, which would make Britain the best place in the world to innovate by speeding up decisions and providing clear direction based on a modern industrial strategy. The new office would help to improve outcomes for those living with migraine, tackling the NHS backlog by accelerating the approval for clinical trials, the number of which has fallen off a cliff under this Government, and delivering better access for patients to the latest treatments.

Those living with migraine should be able to access care when and where they need it, and the next Labour Government will ensure that we have the staff and resources needed to improve waiting lists and the right research environment, which would improve access to new treatments.

Children’s Cancer Care: South-East

Karin Smyth Excerpts

Wednesday 13th March 2024 Westminster Hall

[Karin Smyth (Bristol South) (Lab)]

It is a pleasure to serve under your chairmanship, Sir Christopher—it has been severely tested this afternoon, but you have done remarkably well in getting us all to the end of this important debate, particularly for local people, on the issue of children’s cancer. I commend the hon. Member for Twickenham (Munira Wilson) on securing it. The hon. Members for Carshalton and Wallington (Elliot Colburn), for Richmond Park (Sarah Olney) and for Mole Valley (Sir Paul Beresford), my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) and the right hon. Member for Kingston and Surbiton (Ed Davey) all spoke on behalf of their constituents with the diligence that we would expect.

Receiving a cancer diagnosis is always distressing and deeply worrying for anyone; for a child and their family it can be particularly devastating. Watching a child go through that is a difficulty that most parents, fortunately, do not have to face, but my thoughts are with the many who do, who are being talked about today—particularly those who have lost a child to cancer. I pay tribute to the many families campaigning for good cancer care for children and young people.

Every year, 4,000 children and young people are diagnosed with cancer in the UK; sadly, it is still the biggest killer by disease of children and young people in our country. As we have heard this afternoon, the needs of children and young people with cancer are very different from those of adults. They can face real challenges in cancer care. It is crucial that they get the right treatment and family support. Often that treatment takes place in dedicated specialist treatment centres far from home: children can travel on average 350 miles to get their cancer treatment.

According to research by Young Lives vs Cancer, distressed and vulnerable children often travel across the country to receive care. As we have heard, the location of the centres is important for local people seeking the best care for their children. My city, Bristol, is home to the paediatric haematology/oncology programme, which serves the whole south-west region, working with shared care centres from Gloucestershire to Cornwall to ensure that children receive care as close to home as possible.

What should that care look like? We know that children receive the best care with early diagnosis and access to treatment from well-supported and trained staff, based on the latest research. Sadly, under this Conservative Government swathes of targets have not been met, and children are left waiting for a diagnosis when every second is vital. Those missed targets include the faster diagnosis standard, with three in every 10 patients waiting longer than 28 days for a diagnosis or to have cancer ruled out in 2022-23. Waiting lists have risen to a record high, with over 400,000 children awaiting consultant-led treatment. Prolonged waits have a detrimental impact not only on children’s health, but on their education and overall wellbeing. Although I welcome the children and young people cancer taskforce announced last month, without a properly functioning wider health system, children with cancer will continue to be vulnerable to those missed targets and delays in care.

The root of the crisis is the failure to provide the NHS with the staff it needs to treat patients on time. Indeed, the Royal College of Radiologists, which represents specialist paediatric radiologists, has said that after years of underinvestment, the workforce is stretched, causing backlogs and delay. That is why Labour is committed to providing the staff, the modern technology and the reform that are crucially needed to bring down those waits to safe levels. We will provide 2 million more appointments a year for planned surgery, diagnostics and out-patient care, and double the number of CT and MRI scanners, speeding up diagnosis and access to treatment for children.

We know and we have heard in the debate how important it is for people, and particularly for their families, to be confident that they will receive the right care in the right place. The guidelines produced by NHS England are very clear about the processes to be followed and the clinical case to be made for major service change. Indeed, that was much discussed in the Bill Committee for the Health and Care Act 2022, on which I sat. I look forward to hearing from the Minister—I will give her plenty of time—about any assurances that she can give to local people on the decision, and to the Members of Parliament who have spoken today on both the process and the substance of decision making in the NHS.

[Sir Christopher Chope (in the Chair)]

Minister, over to you.

Oral Answers to Questions

Karin Smyth Excerpts

Tuesday 5th March 2024 Commons Chamber

[Karin Smyth (Bristol South) (Lab)]

Despite watering down the targets for ambulance response times and the A&E four-hour wait, the Government still cannot meet them. We have heard from Members across the House this morning how patients are waiting longer. The new targets say that there will be further improvements in 2024-25, and the Minister has said that again this morning. Can she let us in on what exactly they will be?

[Helen Whately]

I am not going to pre-empt the publication of targets for the coming year, but, as I have said, we will continue to learn lessons from the progress that we have made this year, including on ambulance response times, which are down by over a third. Anyway, I will take no lessons from Labour, because we know the state of the NHS in Wales.

Heart and Circulatory Diseases: Premature Deaths

Karin Smyth Excerpts

Thursday 22nd February 2024 Commons Chamber

[Karin Smyth (Bristol South) (Lab)]

I thank the Backbench Business Committee for granting the debate and pay tribute to the hon. Member for Watford (Dean Russell) for securing it. I think we all agree that he made an excellent and heartfelt speech not just about his own experience, but about the effect on his family and his team. He thanked the British Heart Foundation, and I agree that the resources of such organisations are well received at such times, which can often be very lonely. We wish him and his family the best of health going forward.

My right hon. Friend the Member for Alyn and Deeside (Mark Tami), who is no longer in his place, spoke about his experience as a family member of a young person who has suffered a heart condition, and the SNP spokesperson, the hon. Member for East Dunbartonshire (Amy Callaghan), highlighted her own experience. Cardio- vascular disease affects not only us, but our families too.

As has been said, every week in 2022 an average of 750 people died prematurely of cardiovascular disease, including heart attacks and strokes. Every premature death is of course a tragedy, and our thoughts are with all affected families. NHS England has reported that cardiovascular disease is responsible for one in four premature deaths in the UK. As we have heard, the rate of premature deaths has risen for the past three years consecutively—that is something that we all wish to understand. Many of my constituents, and people across the country, are worried about the state of heart and circulatory disease services. Despite the best efforts of staff, there is a significant backlog in treatment, the number of people on waiting lists for cardiology services is rising, with a huge 189% increase in the past 10 years.

According to the Institute for Public Policy Research, waiting times for cardiology treatment have risen even more sharply than for elective waiting lists as a whole. That is deeply concerning, because long waits mean poorer outcomes for patients, often with devastating results. An estimated 7.6 million in the UK are currently living with heart or circulatory disease. It is vital that every one of those people receives effective and timely diagnosis, referral and treatment, yet under this Government the NHS has lurched from crisis to crisis, and far too many patients are not receiving that timely care.

Labour has an ambitious 10-year plan of reform and modernisation to speed up treatment, with 2 million more appointments a year. We want to return to the constitutional waiting-time targets within a Parliament. As our mission sets out, it is vital to restore the NHS as a world-leading health system—something that we have lost under this Government. The Government have promised to eradicate waits of over a year for elective care by 2025. It would be good if the Minister indicated whether they are on track to do just that.

Labour has a mission to reduce deaths from heart attacks and strokes by a quarter within 10 years, so that fewer lives are lost to the biggest killers. Under our “Fit for the Future” fund, we would double the number of scanners—speeding up heart and circulatory disease diagnosis—and ensure that patients receive the timely treatment that is so vital for managing those conditions. We would also incentivise continuity of care in general practice, which would improve care in our communities for people living with heart and circulatory disease. It would be helpful if the Minister explained why, in the past 14 years of Conservative Government, we have seen such paltry ambition on cardiovascular care and a decline in cardiovascular health. The Minister is probably going to talk about the major conditions strategy, which was announced 13 years into the Conservative party’s time in power, but when can we expect the full strategy to be published, and will it explore the reasons for the backward trend in cardiovascular disease that we are currently seeing? I agree with other hon. Members: we all need to understand the reasons for that.

One of the most concerning aspects of cardiovascular disease in this country is that many of its drivers are higher in areas of greater deprivation and, as we have heard, for black and minority ethnic groups. That is exacerbating health inequalities; we have heard from the SNP spokesman, the hon. Member for East Dunbartonshire, and from the hon. Member for Strangford (Jim Shannon) about the levels in their communities. In 2022, those in the most deprived 10% of the population in England were more than twice as likely to die prematurely from circulatory diseases than those in the least deprived 10% of the population, something I see very much in my own constituency of Bristol South. That is utterly unacceptable across the United Kingdom in the 21st century, particularly given that cardiovascular disease is largely preventable.

Tackling the issues that impact cardiovascular health, from obesity to high blood pressure or smoking, is vital —not only to tackle CVD, but to improve population health overall. That is why we have to tackle social inequalities that influence health and focus more on prevention, improving capacity in local public health teams that do so much vital work to improve the health of their communities. Innovation will also be vital to centre prevention in our health service, and I would welcome an update from the Minister about the NHS digital health check trial in Cornwall. Given that results from that trial will inform the roll-out this spring, can the Minister indicate any challenges apparent in the trial? When can we expect the results to be published?

As we have heard, prevention starts long before the age of 40, when that health check takes place. That is why Labour will introduce a child health action plan that will put prevention at the top of the agenda, ensuring that the next generation can live healthier lives. There are also widespread concerns that the restructuring of the Office for Health Improvement and Disparities could have a detrimental impact on health inequalities. It would be good to hear a reassurance from the Minister about how those concerns about health inequalities will be prioritised in the event of changes to that body.

Finally, research is crucial to preventing further premature deaths. That is why Labour’s regulatory innovation office would make Britain the best place in the world to innovate by speeding up decisions and providing a clear direction based on our modern industrial strategy, alongside a plan to make it easier for more patients to participate in clinical trials. That will deliver better treatment to patients. We owe that to all those families who have lost a loved one to premature death, as well as those who—we are pleased to see—are surviving and living well with this disease. We must improve outcomes; I look forward to hearing the Minister’s comments on the major conditions strategy, but that strategy must be delivered in tandem with a plan to provide the NHS with the staff, technology and resources it needs to bring down waiting lists and improve patient care. I am pleased that a future Labour Government has a plan to do just that.

Oral Answers to Questions

Karin Smyth Excerpts

Tuesday 23rd January 2024 Commons Chamber

[Mr Speaker]

I call the shadow Minister.

[Karin Smyth (Bristol South) (Lab)]

The Secretary of State has said that preparation for winter started last January, but 54% of A&E departments were still rated inadequate or needing improvement in December, exacerbating the winter crisis. What will she do differently this year to ensure that we do not have another winter crisis in 2024-25?

[Victoria Atkins]

Again, the plan that we laid out last year is having a real impact at local level on the services being deployed through our accident and emergency services. We have seen discharge rates improving, for example. We appreciate that there can be local differences, but the importance that we put on maintaining that flow through hospitals is critical to ensuring that the waiting lists and waiting times that the hon. Lady describes are reduced. However, I gently remind the Labour party that it has been running the NHS in Wales for some time now, and it is a great shame that the good people of Wales—[Interruption.] The good people of Wales are waiting longer for their treatment—[Interruption.] They are almost twice as likely—

COP10: WHO Framework Convention on Tobacco Control

Karin Smyth Excerpts

Thursday 18th January 2024 Westminster Hall

[Karin Smyth (Bristol South) (Lab)]

It is a pleasure to serve under your chairmanship this afternoon, Mr Vickers. I understand that this is the third debate this week about tobacco and vaping, so the subject is getting a good airing. I confess that I was not expecting to have a debate about sovereignty and taking back control this Thursday when talking about smoking, but one always has to be prepared to be taken back, as the Minister says. Like colleagues, I thank the hon. Member for Northampton South (Andrew Lewer) for securing this debate, and I thank the right hon. Member for Clwyd West (Mr Jones), my hon. Friend the Member for Ealing, Southall (Mr Sharma) and the hon. Member for Christchurch (Sir Christopher Chope) for their contributions and the work they do in this area.

As we have heard, the convention on tobacco control was adopted in 2003 and came into force in 2005. It has since become one of the most rapidly and widely embraced treaties in UN history. It was developed in response to the globalisation of the tobacco epidemic, and a quick glance at the statistics tells us why. Tobacco kills up to half its long-term users. It is responsible globally for an estimated 8 million deaths per year, 1.2 million of which are of non-smokers exposed to second-hand smoke, yet the global market is still worth more than £800 billion a year. Tobacco remains the largest cause of health inequalities, accounting for as much as half the difference in amenable mortality between the most and least deprived communities in the country.

My hon. Friend the Member for Ealing, Southall highlighted the work that he has done, particularly on reducing smoking among minority and ethnic communities. In my constituency, the tobacco industry has historically employed many thousands of people and there is a long legacy of tobacco, which can be seen in the higher rates of chronic obstructive pulmonary disease and other smoking-related conditions in Bristol South. Tobacco costs the taxpayer tens of billions every year, putting increased pressure on the NHS and care system, as well as contributing to the productivity crisis through lost earnings, unemployment and, sadly, early deaths.

That is why the Labour party is committed to building a smoke-free future. It is why we have said that we will support the Government’s measures to raise the legal smoking age by a year every year, so that a 14-year-old today will never legally be able to buy a pack of cigarettes. It is also why we would make sure that all hospital trusts integrate opt-out smoking interventions into routine care, so that every interaction with the NHS encourages quitting. Unlike the hon. Member for Linlithgow and East Falkirk (Martyn Day), I am a former smoker who did have to quit. I pay tribute to the people who do it: it is a very hard thing to do.

This is a global issue, which is why we have to tackle it globally. We have seen the tactics of the tobacco industry over many years. Hugely profitable multinational companies will use their muscle in individual states—we have seen in Uruguay, Vietnam and elsewhere how they will behave —so working together seems to be the way forward. The establishment of the WHO framework two decades ago is an important milestone in tackling a public health hazard. It encourages parties to implement common-sense policies that have strong public support, such as protecting public health policies from commercial and vested interests; protecting people from secondary smoke; and bans on advertising and on so on. Those have been developed over many decades.

As we have heard, the next conference of the parties will be the 10th since the convention entered into force and will take place in Panama. Agenda items up for discussion will be articles 9 and 10 of the convention, on the regulation of the contents and disclosure of tobacco products, which is addressed by the UK’s Tobacco and Related Products Regulations 2016. We all seem very keen to send the Minister to Panama—the right hon. Member for Clwyd West suggested a boat, which would take her some length of time—so we are all interested in whether she is going, and, more specifically, how she will be instructing the UK delegation to approach these really important discussions.

Does the Minister have any plans to bring other nicotine products, such as nicotine pouches, into the regulatory process as part of the Government's forthcoming legislation? Many colleagues will have received letters from constituents about e-cigarettes and vaping, which will be discussed at COP10. We hear what they are saying. E-cigarettes are an important tool for stopping smoking. Evidence indicates that they are less harmful than cigarettes, and that their use shows a positive association with quitting smoking, as we have heard so eloquently from colleagues today—something we would support. Particularly in this month, January, many smokers are grappling with their new year's resolutions, and we fully support them in that journey however we can. We must acknowledge, however, that vaping is not risk free, particularly for people who have never smoked, and that there is a lack of evidence on the long-term health impacts.

As we have said many times in this House, we are particularly concerned about the rise in youth vaping. In just the past two years, the number of children aged 11 to 17 who vape regularly has more than trebled. Over 140,000 more children have taken up vaping since the Government voted down Labour’s proposed measures in 2021 to crack down on companies that brand and advertise vapes to appeal to kids. We want tougher regulation of those products and for a strong message to be sent to those companies trying to make a profit at the expense of our children’s health. I hope that Ministers, via their role in the WHO, will push harder for stronger and clearer messages, based on the latest data and evidence, and seek to regulate this market in a way that promotes quality and safety and, crucially, that protects young people.

Will the Minister use the forthcoming tobacco and vapes Bill to close loopholes that allow nicotine-free vapes to be sold to under-18s, and free samples of even addictive nicotine products to be given to children? Is she considering strengthening the powers of the regulator, the Medicines and Healthcare products Regulatory Agency, to deal with the number of illegal vaping products circulating on the UK market today? She is welcome to our policy—will she back our proposal to ban companies from branding and advertising vaping products in a way that is appealing to children?

Just as the last Labour Government led the way on tobacco control, so will the next, with a road map to a smoke-free Britain. We want to make sure that hospital trusts integrate opt-out smoking cessation interventions into routine care, making every clinical consultation count. We will legislate to require tobacco companies to include information in tobacco products that dispels the myth that smoking reduces stress and anxiety, and tackle the rapid rise in youth vaping, on which the Government have failed to act so far. To tackle health inequalities and rescue the NHS from 14 years of decline, we need bold measures to tackle smoking and improve public health.

[Mr David Jones]

Could the hon. Lady say what measures she proposes to put in place to tackle the issue of youth vaping?

[Karin Smyth]

I am sure the right hon. Gentleman took great notice of the Labour party conference, where we announced a ban on targeting, and advertising and marketing to, young people. We think that where there is a will, there is a way. The ban on smoking, which I remember very well from when I was part of an NHS trust, was an incredibly difficult thing to do and enforce. But when the Government make clear that the targeting of young people is completely unacceptable, the market will react. We want to work with companies to make sure that happens. That is our plan for doing that and for getting the NHS back on its feet and making it fit for the future.

Draft Anaesthesia Associates and Physician Associates Order 2024

Karin Smyth Excerpts

Wednesday 17th January 2024 General Committees

[Karin Smyth (Bristol South) (Lab)]

It is a pleasure to serve under your chairmanship, Dame Caroline. I thank the Minister and his officials for meeting me in advance of today’s sitting, and for the courtesy they showed to the Opposition in doing so.

When we are in need of care from the NHS, we are usually at our most vulnerable. We expect to be seen and treated by a professional who is competent in their role and regulated. It is vital that patients know who is undertaking their care, and can be confident in their competence. It is paramount to patient safety that those treating patients in the NHS are regulated. There has clearly been a delay in getting to that point with physician associates and anaesthesia associates, and regulation is long overdue. Those positions play an important role as part of a flexible and diverse workforce, but should never be seen as a replacement for doctors. I am pleased that the Minister has made that clear.

PAs and AAs were first introduced as assistants by the previous Labour Government because they are important in bringing people with different skills into the NHS and providing opportunities for those who do not take the traditional route into clinical roles. They exist in many systems around the world, and we thank them for their service. As part of a multidisciplinary team, they can provide much-needed capacity by supporting doctors and other frontline staff. So important are they that, as we have heard, their numbers are going to be increased as part of the Government’s workforce plan.

However, we must be clear that associates are not a panacea to 14 years of Conservative mismanagement of the NHS. The current crisis on the frontline, the workforce crisis, and record high waiting lists will not be solved by increasing the number of associates. The Government have cut 2,000 GPs, and many people now find it impossible to get an appointment when they need one. The failure to recruit, and particularly to retain, enough fully qualified staff should not be papered over by using alternatives. The Government’s inability to maintain relationships with frontline staff, including both junior doctors and GPs, is exacerbating worries about this legislation. The Government have already shattered morale among the health workforce. Many of us, as MPs, have heard from the people concerned most specifically in the run-up to this legislation. My first question for the Minister is: will he reassure me that the expansion of PAs and AAs will not impinge on medical specialty training expansion and, crucially, opportunities?

A number of concerns have been raised with me and other colleagues about the detail of this order and its implications for safety—concerns that really should have been addressed earlier if the Government had better relationships with key stakeholders. It is important for a Government to listen to and work with patients and professionals, and address their concerns. I ask the Minister to do that today, as this legislation goes through, and throughout the consultation process. That is my second question to the Minister: can he provide assurance that, going forward, all stakeholders will be fully consulted by the GMC on the details of the draft order? Patients need clarity about who is treating them and why. What measures will the Minister take to ensure that patients have that clarity, and improved awareness of who they could be speaking to in a GP surgery or other medical setting?

It is vital that people who are looking to become associates are properly supported and supervised to work within a defined scope in those roles. Addressing the workforce crisis in the NHS, so that staff have the time and, crucially, the capacity to support PAs and AAs, is crucial to ensure that those roles are successful. Can the Minister indicate what support would be available to PAs and AAs, what level of supervision will be suitable, and how the Government will ensure that that is in place, given that we all know how stretched the frontline already is? Has he had discussion with the GMC about defining the scope of PAs and AAs?

It will also be helpful to hear the Minister’s thoughts on how the draft order may impact on career progression in the NHS and help with retention, which we all want. Are there plans to define the core capabilities expected of PAs and AAs? What assurances can the Minster give us that the GMC is the best regulator to undertake that work? That point has been raised with many Members. Will the Minister explain how the order fits in with wider regulation reform, which is to be undertaken over the next year or so? Patient safety is and must always be our No. 1 priority. Can the Minister provide any assurances about the measures in place to review this legislation over the two-year transition period, particularly given the expansion of the role of PAs and AAs in the NHS?

Finally, some have expressed concern about the safeguards around the fitness-to-practice decisions taken by regulators, including decisions to remove or reduce regulatory restrictions on a registrant who has been found to present a possibly serious risk to the public. What assurances can the Minister give on that point? If the legislation is deemed not suitable to improve patient safety, what measures will the Government take to remedy that and keep on top of the situation?

The draft order provides a framework for the regulation of associates. It is vital that all those treating patients in the NHS are regulated and safe, and for that reason we will not oppose the statutory instrument. We support regulation. However, I hope that my concerns and those of others—I know that other right hon. and hon. colleagues wish to speak—will be monitored closely. I look forward to hearing further assurances from the Minister as he works to ensure that the change is successful.

[Several hon. Members rose —]

New Dementia Treatments

Karin Smyth Excerpts

Thursday 11th January 2024 Westminster Hall

[Karin Smyth (Bristol South) (Lab)]

It is a pleasure to serve under your chairship this afternoon, Mr Sharma. I thank the Backbench Business Committee for granting this debate. I pay tribute to work of the right hon. Member for Ashford (Damian Green) and my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams). They are formidable chairs of their respective APPGs on adult social care and on dementia. I know that the Minister has great respect for them, as we all do; they do fantastic work. Sharing the experiences of supporting family members was very apparent in this debate, and my hon. Friend’s image of holding her mother and feeling the ravages of the disease was incredibly well put. We have heard very moving statements this afternoon.

We are holding this debate at a crucial time for our country. We are a world leader—sometimes we overuse that term—in life sciences research that offers people living with dementia the prospect of new treatments as a lifeline. Finding a cure is where we all want to get to. The new treatments provide real hope and opportunity, but how do we get there? We have touched on that. New treatments and research help, but the workforce is where we will make a big difference. That is why we have committed to recovering clinical trial activity in the UK and delivering on the NHS long-term workforce plan.

We want to make sure it is easier to conduct lifesaving research in the UK for conditions such as dementia by implementing a more efficient set-up process so that people can sign up to participate in trials more easily, but that has to be supported by ensuring our NHS has the staff it needs to enable more clinical trials. Without the workforce to deliver new treatments, those living with dementia and their families will continue to face delays and we will not be able to access the benefits of early diagnosis. That is why I am pleased that the Government have finally accepted the need for a long-term workforce plan in the NHS.

As my hon. Friend the Member for Oldham East and Saddleworth said, it is disappointing that the Government shelved the plans for a dedicated dementia strategy. England remains the only nation without a specific dementia plan. That is very short-term thinking, and it would be interesting to hear from the Minister about that. In 2022, I said:

“We cannot give confidence to people suffering with dementia and their carers without a much clearer plan that is in place very quickly.”—[Official Report, 14 June 2022; Vol. 716, c. 141.]

That remains the case today.

Although we currently have no treatments to slow or cure dementia, as we have heard, there is hope on the horizon after the recent breakthroughs with drugs that target the underlying causes of Alzheimer’s disease, which are a hugely welcome step towards combating it. We need to ensure that our health service is ready and able to deliver the new treatments and technologies when they become available. The treatments, if approved, will depend on early diagnosis, which can be determined only by a PET scan or a CSF test. As the right hon. Member for Ashford said, the health service was not set up in 1948 to cope with dementia and similar diseases, so we need a 21st century service that can. It would be helpful to hear what plans the Minister has to ensure that the NHS is ready to deliver the new treatments. Has she had any discussions with NHS England about delivery ahead of the potential MHRA decision this year on the drugs currently under consideration?

There are too many people living with undiagnosed dementia. Part of the problem is the lack of scanning capacity for accurate diagnosis of dementia sub-types. We have one of the lowest per capita ratios of diagnostic scanners in the OECD, behind Russia, Slovakia and Chile. What steps are the Government taking to increase that diagnostic infrastructure? We have put forward a clear and costed plan to double the number of scanners, and, as with many of our other policies, the Minister is welcome to borrow it.

In a response to a written question last month, the Minister restated the commitment to double funding for dementia research, but I would welcome an update on whether that is on track for delivery this year. Further research continues to be vital to ensure that people living with dementia receive an early and accurate diagnosis. We have heard today about emerging techniques and new technologies, but we have to be able to access them.

It is estimated that more than 1 million people aged 25 to 49 are out of work due to caring responsibilities, so we need to alleviate the challenges and economic strain as a result of those caring for people living with dementia. It is not good for them, their families or, indeed, our economy. New treatments bring hope, but to benefit from them, we need a Government with the competence and foresight to seize the opportunity. Transforming dementia diagnosis and care is vital to improve the lives of those living with dementia and those who care for them. The bulk of the cost of dementia falls not on the NHS, but on unpaid carers and the care system, as hon. Members have said so eloquently today.

After 14 years, Mr Sharma, you would expect me to say that the Conservative party is not capable of making the NHS fit for the 21st century, let alone making the most of the new opportunities that our life science sector present for people. We want to make the NHS fit for the future, so that we are able to benefit from the exciting new treatments being developed and that all those with dementia and their families can be confident that they will receive the support they deserve.

Oral Answers to Questions

Karin Smyth Excerpts

Tuesday 17th October 2023 Commons Chamber

[Mr Speaker]

I call the shadow Minister.

[Karin Smyth (Bristol South) (Lab)]

Not only are the hospital buildings crumbling after 13 years of neglect, creating huge capacity challenges; it seems that those still standing do not have enough beds. As we heard from The Times this morning, the number of

“hospital beds…has fallen by almost 3,000 since ministers promised 5,000 before winter”.

It feels pretty much like winter to me. Is that just another broken promise?

[Steve Barclay]

First, we have got more than £1 billion of investment in an additional 5,000 permanent beds going into the NHS estate as part of our urgent and emergency care recovery programme. More widely, the Government are committed to the biggest ever investment in the NHS estate, backed with more than £20 billion—the biggest of any Government. Of course, we will not take lectures from Labour, which bequeathed the NHS the consequence of expensive private finance initiative deals that many trusts are still paying for to this day.

Fibrodysplasia Ossificans Progressiva

Karin Smyth Excerpts

Thursday 7th September 2023 Commons Chamber

[Karin Smyth (Bristol South) (Lab)]

It is a pleasure to be here this afternoon. I thank the Backbench Business Committee for granting the debate and pay tribute to the right hon. Member for Hemel Hempstead (Sir Mike Penning), who secured it and who has tirelessly campaigned on this issue with his constituents and the charity FOP Friends, who I understand have joined us today in the Public Gallery. I pay tribute to the families’ tenacity and bravery in raising the profile of this rare condition, and in continuing to do so. I also thank my hon. Friend the Member for Blaydon (Liz Twist), the hon. Member for Strangford (Jim Shannon) and the hon. Member for Inverclyde (Ronnie Cowan) for being here this afternoon.

One of the great privileges of our role here is learning from the experience—sometimes the very difficult and harrowing experience—of our constituents, and learning from them about subjects that we might not ordinarily have come across. I have certainly learnt a great deal from preparing for the debate, and also this afternoon. I am grateful to the right hon. Member for Hemel Hempstead for helping me to understand the impact of this condition, which he has done so eloquently and powerfully today on their behalf. I know that he worked with my office and other offices to ensure that all of us were well informed.

As we have heard, this is an ultra-rare condition, affecting only one person in 1 million, and there is currently no cure. However, we also know that what action can be taken is effective, both in diagnosis—which is crucial—and in care, and that people can some people can enjoy have good general health and reach old age, which I have been told is now over 60. It is my birthday this week, so that is quite close. I do not think it is old age, but they can certainly live for quite some time.

Early diagnosis is vital to managing the progression of FOP, and the average age of diagnosis, as I understand it, is around eight years old—as we have heard, the early signs include under-turned big toes—but greater awareness would mean earlier diagnosis for children with FOP. Families who understand that something is not quite right would be comforted to have that diagnosis. As we know, young children are not particularly careful or robust and, although we understand the dangers of immunisations into muscle, it would be a positive step forward for FOP.

Fifty-two per cent of people with FOP initially receive an incorrect diagnosis, creating more delays in care, with swellings due to flare-ups often being misdiagnosed as cancer or other diseases, which leads to unnecessary and potentially harmful procedures.

[Sir Mike Penning]

There have been limb amputations, and the damage that does to the muscle means it almost invariably turns into bone. Surgeons do not amputate a limb for the sake of it, and with the best will in the world, amputation is often more damaging and does not help the patient; if anything, it makes it worse.

[Karin Smyth]

I thank the right hon. Gentleman for his clarification about that, which adds to the trauma that people are living with.

A genetic test can confirm the diagnosis, and we expect to hear whether the Minister has made any assessment about including the test in the national genomic test directory for rare and inherited diseases. Given the commitment in the rare diseases action plan, it would be helpful if the Minister outlined what discussions he has had on new-born screening for FOP and the inclusion of digital education resources relating to FOP. As we have heard, there are only three knowledgeable clinicians in the UK. Access to information and guidance on FOP would make a huge difference for all those living with this condition.

Accepting that the Minister and I are the B team, and scientists would have been preferable, it is important that there is good care to help people with the condition who may be immobilised at a fairly young age. Care for FOP and other rare diseases is specialist and complex, and it reaches across the health and social care systems. I am sure I speak for him when I say that we are both very pleased to talk about the impact on the wider health service. We know that we are very short of care staff more generally, which is not helpful for people who need care or their families. Those living with this condition are vulnerable to some of the wider issues in the care service.

More generally, it would be helpful if the Government could outline more support in the workforce plan, including in social care. Without an increase in the number of care workers, those living with rare diseases such as FOP will struggle to get the care they need. That is why we think it should happen, and it would be helpful to hear what steps the Government are taking to support the care workforce for people living with this condition.

We have heard that research is the greatest hope for those living with this condition, and the right hon. Member for Hemel Hempstead has argued passionately, as have others, for the need to continue funding the STOPFOP trial. The amount of money raised by FOP Friends and the progress that has been made are an incredible achievement. We know that research into FOP will have benefits and implications for more common illnesses, such as osteoporosis, childhood brain cancer and heart disease.

Obviously, we are all pleased to hear that, after a very difficult and uncertain two years of frankly unnecessary negotiations—which have halted or delayed collaboration and research—we will now be involved in the Horizon programme, which will be crucial to making progress in this area. A key commitment in the rare diseases action plan is to improve the Be Part of Research platform to make it easier for people living with rare diseases to participate in research, should they choose to do so. Again, it would be helpful to hear from the Minister what the Government are doing to support those who wish to take part in the trial.

As we have heard, FOP can be devastating. The families want to live in good health and live their best life with their loved ones. I give my heartfelt commendation to those living with this condition and their families. I am pleased that people have come here today and I am sure that that visit to Downing Street was a really positive. The fact that we are debating this issue today is a testament to their hard work and commitment.