(4 days, 11 hours ago)
Commons ChamberIf Rory has already told my hon. Friend a little bit about the Parky charter, she is about to get a repeat. On World Parkinson’s Day, the Movers and Shakers group brought hundreds of people with Parkinson’s together in Old Palace Yard. Those people sang with one voice, in a reworked version of “I Will Survive”, their demands to have the Parky charter adopted. I will spare the House my singing voice, but that charter is a bold five-point plan backed by the three major Parkinson’s charities in the UK. It is not a wish list; it is a road map to dignity, and I will take some time to outline those five demands.
The first demand is for speedy specialists; people referred for a possible Parkinson’s diagnosis should see a consultant within 18 weeks and have annual reviews thereafter. The second is instant information; a Parkinson’s diagnosis should be accompanied by immediate, clear and accessible information. The third is the Parkinson’s passport, a tool to communicate patients’ needs across all healthcare touchpoints. The fourth is comprehensive care; every person with Parkinson’s should have full access to a multidisciplinary team of specialist nurses, physiotherapists, and occupational and speech therapists. The fifth is the quest for a cure—a determined and funded national commitment to support Parkinson’s research. These are not unattainable dreams; they are basic standards of decency, fairness and evidence-based healthcare.
I will start with the first two demands, which are diagnosis and information. Currently, neurology services in England are seeing only about half of patients within the 18-week target, and the waiting list for neurology services now exceeds 230,000. The situation in Scotland and Wales follows a similar pattern of long waiting lists. In my constituency, NHS Fife has a median wait for a first neurology appointment of 31 weeks, and nine out of 10 people are seen within 87 weeks. In contrast, next door in Forth Valley—which is also part of my constituency —nine out of 10 people are seen within just nine weeks. There are currently 1,836 people waiting to see a neurologist in Fife, and 403 in Forth Valley. It can never be acceptable for a person’s postcode to dictate the quality of care they receive.
As part of my preparation for today’s debate, I heard from someone who has been diagnosed with young onset Parkinson’s disease at the age of just 47, just a few years older than me. He told me that when his GP identified symptoms, he was referred to his neurology service urgently—I underline the word urgently—and that the expectation from his GP was that “urgent” meant that he would be “seen within days”. When he had not heard from the hospital five days later, he called to check that it had received his referral, and was told that the person at the top of the waiting list had been waiting for 39 weeks so far—39 weeks so far for an urgent appointment.
Does my hon. Friend agree that awaiting a diagnosis, and that shattering diagnosis when it eventually comes, has a massive impact on not just the individual concerned but their wider family, and that any action on this issue should be holistic and family-based?
That was exactly my response when I heard that story. I imagined what it must be like for someone and their loved ones to sit with a suggested diagnosis of something so serious and significant, having to wait nine months before even seeing a specialist for the first time. To me, it felt like a clash between bureaucracy and humanity. We can and we must push for better.
The UK currently ranks 44th out of 45 European nations when it comes to the number of neurologists per capita. That is not a workforce issue or a bureaucratic issue—it is a sign of a systematic failure and a life-altering injustice. Parkinson’s is a condition that can progress rapidly, and delays mean lost time, lost function and lost hope. However, the crisis does not end with diagnosis; in fact, for many, that is when the sense of abandonment begins.
Nearly a quarter of people diagnosed with Parkinson’s report that they were not given adequate information about their condition. A similar number, as referred to by the right hon. Member for Gainsborough (Sir Edward Leigh), were not told about the support available through Parkinson’s UK, the helplines, the care advisers, the groups that offer peer support and the crucial services that can help people adapt, cope and find community. Can you imagine, Madam Deputy Speaker, receiving a life-altering diagnosis and being sent home with no clear path, no specialist nurse, no appointment, no physiotherapist and no speech therapist—just a prescription and a sense that your life has fundamentally changed? That is not care; that is neglect.
Again, there is hope. The Parky charter calls for a Parkinson’s passport, and it is possible that the foundations for that already exist in the pioneering Parkinson’s Connect programme. That programme allows clinicians to refer patients directly to the full network of support that Parkinson’s UK offers, from specialist nurses to peer support groups, helplines and tailored advice. It is low-cost, high-impact and, crucially, scalable. When the Minister responds later in the debate, will she agree to meet Parkinson’s UK to explore how Parkinson’s Connect can be scaled across the country? It is the type of innovation that our health system needs: solutions that empower people and relieve pressure on the NHS simultaneously.
The fourth strand of the Parky charter is comprehensive care. People with Parkinson’s should not be lost in a bureaucratic labyrinth while their condition worsens. Governments across the UK could deliver a diagnostic pathway that guarantees access to a Parkinson’s specialist within 18 weeks of referral—not occasionally, not when it is convenient, but every single time. That manageable goal aligns with existing National Institute for Health and Care Excellence guidelines. I urge the Minister to consider that the NHS long-term workforce plan must deliver the neurological professionals and Parkinson’s specialist nurses that this country urgently needs. We must remember that delays in diagnosis and care lead to irreversible deterioration, and the cost is not just human, but financial. Parkinson’s costs the UK an estimated £3 billion a year, much of which is avoidable through better care and early intervention.
I recently spoke with a clinician who was emphatic in his view that people with Parkinson’s need to be able to access specialist services easily. In turn, those specialist services need to be able to recognise when advanced therapies, such as apomorphine infusion, Produodopa and deep brain stimulation, may be helpful. Critically, patients must be able to access them easily and equally. Compared to our European counterparts, this clinician’s view was that we do not use those advanced therapies as much as we should.
Despite there being no lack of ambition in Scotland, we are lagging behind on interventions such as deep brain stimulation, which can be hugely impactful on people’s quality of life. There is scope and there is hope to grow the provision for deep brain stimulation in Scotland, but we need to see urgent action, attention and focus to make that a reality.
We cannot talk about comprehensive care without acknowledging the dedicated but wildly overstretched workforce. Our health professionals do heroic work, but they are overstretched. Today, we are 100 full-time equivalent Parkinson’s nurses short of what is needed. Only 44% of people with Parkinson’s have access to occupational therapists, only 62% have access to physio- therapists and just 40% have access to speech and language therapists, despite the fact that Parkinson’s affects speech and swallowing so acutely. We must do better. The NHS across the UK must invest in this multi- disciplinary workforce that enables people with Parkinson’s to live well.
Investing in the Parkinson’s workforce is not just the humane thing to do, but the economically smart thing to do. We also need to make sure we are spending smarter in Scotland. It has been 14 years since the Christie commission talked about the urgency of reform for public services to make progress on preventive spend to improve outcomes for patients. That commission was started by a different political party from my own, but it was absolutely the right thing to do, and its findings were welcomed across the political spectrum.
However, despite that working consensus, here we are 14 years later, still making the same arguments for change. I hope that during her speech the Minister will confirm that the forthcoming NHS 10-year plan will make a similar commitment on preventive spending, but with more of an outline about how we will deliver that change of funding priorities, unlike the promises that we have seen in Scotland.
I will move on to talking about personal independence payments and the cost of living with Parkinson’s. Beyond the NHS, our support systems are failing people with Parkinson’s. The average person with Parkinson’s incurs extra costs of £7,500 a year, and when lost income is factored in, that rises to more than £22,000 annually. PIP is intended to offset those costs, yet Parkinson’s claimants are 10% more likely to be incorrectly assessed than those with other conditions. We know that the status quo of assessment and award for PIP is unfit for purpose and that reforms are necessary. Campaigners have welcomed some of the moves in the recent Green Paper published by the Government.
However, the Government’s proposals to tighten PIP eligibility—for example, by requiring a minimum four-point score in one daily living category—would miss the bigger picture for people with Parkinson’s, and could deny support to many who are profoundly affected by their condition and who rely on this working-age benefit to underpin the quality of their life. As part of that necessary reform, I urge the Minister to work with colleagues in the Department for Work and Pensions to consider submissions from organisations, including Parkinson’s UK, in pursuing reform of this broken system. A Labour model of welfare support should start from a position of considering the individual and be a system that embraces the principles of dignity, fairness and respect.
Let me draw my speech to a close on a note of hope from the charter’s fifth demand: the quest for a cure. We stand on the brink of transformative discoveries. We have scientists and there is momentum, but what we need now is funding. The UK is already leading the way in innovative research. The Edmond J. Safra Foundation’s “accelerating clinical trials in Parkinson’s disease” platform trial is hosted by University College London, and supported by the National Institute for Health and Care Research and Parkinson’s UK. It is a global first—a multi-arm, multi-stage trial that fast-tracks promising treatments. The Government have invested £4.6 million, which has leveraged an additional £3.8 million in overseas funding and catalysed a £16 million programme, but I urge them to go further. A national registry, modelled on successful schemes in the US, could connect patients to clinical trials more effectively. Better data would mean better, faster and more inclusive research.
We will not find a cure without involving people living with Parkinson’s in trials, and they are willing. As one participant, Helen, put it to me:
“You’re not doing it for you. You’re doing it for future generations.”
The Government’s £20 billion R&D pledge is welcome, but a condition that costs the economy £3 billion a year and affects more than 150,000 people cannot remain under-prioritised. Will the Minister commit to meeting Cure Parkinson’s and Parkinson’s UK to discuss how targeted investment can turn hope into reality?
Let me return to the voices that brought us here. The Parky charter is not a wish list; it is a manifesto for dignity. Its reasonable and fair demands offer us a clear and achievable path forward: speedier diagnoses, informed and empowered patients, co-ordinated care, comprehensive support and determination that we will find a cure. These are not luxuries; they are necessities for dignity and survival. We owe it to those living with Parkinson’s now, and to those who will be diagnosed tomorrow, to act decisively. This is the moment when we can turn awareness into action, and pledges into progress.
I particularly thank my office staff member Vonnie Sandlan, who not only brought this issue to my attention but conducted much of the research for my speech. She has educated me and, I hope, others about the importance of tackling Parkinson’s effectively and in a co-ordinated manner, and allowed me to hear some of the incredible stories to which I have referred today. I look forward to hearing the various contributions from Members on both sides of the House, and the Minister’s response.
(1 month, 3 weeks ago)
Commons ChamberThere is hardly a family in the UK who have not been touched by cancer in some way—this morning’s debate has shown how much we reflect the population—and the feeling of fear, anxiety and heartbreak that comes with it. But for those diagnosed with a rare cancer, the challenges are even greater: delayed diagnosis, fewer treatment options and the shocking lack of research, which means that these patients and their families are often left in the dark. I am glad that we are united in saying that that has to change. I am so proud to support the Bill introduced by my hon. Friend the Member for Edinburgh South West (Dr Arthur)—I think I possibly worked with his father-in-law at Bell Baxter many years ago—because we now have the chance to turn the tide and focus on people with rare cancers.
We have talked a lot about the statistics. Rare cancers still do not get the same investment in research or access to clinical trials as common cancers. As a result, survival rates for some of the least survivable cancers, like pancreatic cancer, brain cancer and stomach cancer, are stuck at just 16%, which is not good enough.
Seven weeks ago, I lost my dad. More time has now passed since his death than the time we had between his diagnosis and his passing. The grief is still exceptionally raw.
I pay tribute to my hon. Friend’s dad. He would be extremely proud of her, and of the speech that she is making.
I thank my hon. Friend for that intervention.
The Brain Tumour Charity and Brain Tumour Research have highlighted time and again that just 1% of national cancer research funding goes towards brain tumours, despite their being the biggest cancer killer of children and adults under 40. That is totally unacceptable. People who are dealing with these devastating diagnoses need more than words; they need real investment in clinical trials and better pathways to diagnosis. The Bill is about fairness—it is about tackling the lack of funding, the difficulty in getting patients into research, and the absence of clear Government leadership in this area.
People miss out on life-changing trials because they simply do not know that they exist. My hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) talked about having a universal system in this country. We also have one of the most siloed systems. People in one part of the system often do not know what is going on in other parts, and we need that to stop. We have talked a lot about the approaches in places like the United States, where targeted policies have led to surges in new treatments for rare cancers. But we also need to recognise what else is going on in the United States: a raft of Executive orders from the White House is putting higher education and current clinical trials into a tailspin.
I want to pay tribute to the people who have helped me a lot over the last few weeks, in particular my hon. Friend the Member for Mitcham and Morden. She talks about being angry. I just remember that anger is a natural stage of grief, but it is also a massive driver for change and for getting things done. I am not at the angry stage just yet, but I will be at some point, and when I get there I will certainly be joining my hon. Friend; it is something we all get.
Somebody said to me many years ago that the greatest gift that any of us can give is the gift of time. No matter our political differences on other things, we have a chance today to give others the gift of time and to make sure no other families have to experience what we have had to go through. Please pass this Bill. Thank you.
(2 months, 1 week ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
It is a pleasure to serve under your chairship, Dr Huq. I congratulate my hon. Friend the Member for Hastings and Rye (Helena Dollimore) on securing this vital debate. In the time available, I will concentrate on the importance of delivery. The hon. Member for Strangford (Jim Shannon) spoke eloquently about the experience in Northern Ireland; it is only appropriate that I, as a Scottish MP, talk about my constituency and my constituents’ experience.
In 2021, the Scottish Government published its women’s health plan, the intent of which was absolutely sound. In November ’24, they provided the final report for this plan, measuring what it had delivered. I looked at that when preparing this speech, and in particular at one of the topics that comes up regularly in my inbox—endometriosis. People, particularly younger women, are living with pain. It is difficult to get on to the referral pathway, and long waiting times for people who do get there.
The Scottish Government’s strategy detailed a clinical endometriosis pathway for women that was launched in January ’23. It was rightly lauded at the time, but the Scottish Government have a habit of announcing and launching brand new shiny things that are then not delivered operationally. There is a review date of January ’24 on the pathway, but I cannot find any evidence of that review having ever happened. It gives a set of criteria for women to be referred to specialist services, but when someone has those symptoms and declares them to their GPs, they are still do not getting that referral.
When people actually get on to a waiting list, it is endless. Unlike the experience in England, where waiting lists are starting to come down, in Scotland they are not. My constituency of Cumbernauld and Kirkintilloch straddles the periphery of NHS Lanarkshire and NHS Greater Glasgow and Clyde. On average, 65% of people referred to specialist gynaecological services in Scotland wait more than 12 weeks for the first appointment—most wait an awful lot longer than that, as the number of clinics is certainly less than when I worked in the service 30 years ago.
One of my constituents informed me that after fighting for a year with her GP to get a referral to a specialist service, she waited over a year before deciding to go private. She travelled abroad for treatment because she could not stand the uncertainty and the pain. That is just one case from my inbox; there are many, many more. Pathways and strategies are good, but they need to be delivered. I know my hon. Friend the Minister, and I am assured that the Government are focusing on delivery, not just the strategy and a publication that can be held up. I welcome that.
(3 months ago)
Commons ChamberThe hon. Gentleman makes a good point. NICE is there for a particular reason: to ensure that the drugs being developed are available on the NHS when they meet the required threshold. Of course, we want to ensure that as new treatments become available, they are available for British patients. The work that is being done with Moderna and other pharmaceutical companies will ensure that British patients have access to some of the latest treatments as they come through the pipeline.
One of my earliest memories is being in a hospital room as my grandfather was dying of cancer. Ten days ago, I was in the same hospital as my father died with the same cancer—50 years in between, almost to the week, but no significant change in prognosis. Can the Minister assure me that what are termed the less survivable cancers, which are not necessarily rare cancers, are included as part of this work?
My heart goes out to my hon. Friend. I lost both my parents to cancer, and it does not matter when it happens in your life; it is just heartbreaking. As the children of those parents, you never get over it. Of course, we will have a concerted effort on less survivable cancers. In part, they are less survivable because the research has not been done, or not to the extent that we can develop better treatments for them. That is where we really have to shift the dial in the next decade. We have to make sure that people who have a cancer diagnosis have the best opportunities to live a long and fulfilling life after cancer.
(6 months ago)
Commons ChamberLord Darzi’s independent report pronounced that the NHS in England was in a critical condition. By commissioning the report and through the announcements in last week’s Budget, the Government have declared their intention to fix our NHS and set a firm foundation for the future.
I particularly commend the decision in the Budget to invest in mental health crisis centres, in order to move those experiencing a mental health crisis away from the accident and emergency unit. Although we will always need crisis support, mental health provision—like physical health provision—should focus on intervention at the earliest possible juncture, rather than relying on emergency care.
So often, those in need of mental health care face barriers to accessing help. They face difficulty in getting GP appointments and being referred to the appropriate waiting lists, and they then spend years on those waiting lists. Young people with neurodevelopmental conditions might spend years not being seen by local child and adolescent mental health services, until their case is referred to the private sector because they are about to turn 18 or they are transferred to the bottom of the adult waiting list. The Budget is clear that there is a need for investment.
My Scottish constituents have been failed by two Governments. The previous Conservative Government have rightly been the focus of much of today’s debate, but the current Scottish Government have been asleep on the job, quite frankly. All the signs that made Lord Darzi say that the NHS was in crisis in England apply just as much to Scotland. One in six Scots are on a waiting list for treatment, tests or appointments. Hospitals post on social media telling patients not to go to accident and emergency unless their condition is life-threatening—my local hospitals did so on 27 October. GPs are at breaking point, with a prescription system that still requires paper and fax machines, and there is no NHS app or e-prescribing for Scottish patients. I commend the largest budget settlement for the Scottish Government in the history of devolution. Now, the Scottish Government must use it to fix the system that they broke.
Devolution is massively important to me—I knocked on doors to campaign for the creation of the Scottish Parliament—and I will defend it with my life, but we want to ensure that it works for everyone, so that there is no chance of “big boy done it and ran away.”
(6 months, 2 weeks ago)
Commons ChamberThe hon. Member is absolutely right: there are seriously under-doctored areas of the country. Given the finite resources that we have, we must focus on areas with the greatest need. I would be more than happy to meet him to discuss how that might best be reflected in his constituency.
Access to GP appointments is consistently raised with me in Cumbernauld. A number of constituents have informed me that, having made complaints, they have been removed from the list of the general practice at which they have been patients for many years. Will the Minister raise the matter with the Scottish Government’s Cabinet Secretary for Health and Social Care, so that we can get some resolution for my constituents?
Patients have an absolute right to complain about NHS services, and they should not be removed from a practice’s list because of a complaint they have made. Health is of course devolved, but I have asked officials in the Department to engage with their Scottish Government counterparts on that matter to ensure that patients in my hon. Friend’s constituency are treated with the respect and compassion that they deserve.