(6 days, 21 hours ago)
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Graeme Downie (Dunfermline and Dollar) (Lab)
I beg to move,
That this House has considered Parkinson’s awareness month.
I extend my gratitude to the Backbench Business Committee for granting me this debate, and I thank hon. Members for attending, especially given that local elections are taking place across some parts of the country—I know the pull of the doorsteps is strong for politicians, as can be the power of persuasion from party bosses and headquarters.
I thank hon. Members for supporting my application for the debate, including my hon. Friends the Members for Aldershot (Alex Baker), for Newcastle-under-Lyme (Adam Jogee), for Redditch (Chris Bloore) and for Weston-super-Mare (Dan Aldridge), who are sadly unable to be here but who I wanted to mention. I also thank the current and former chairs of the all-party parliamentary group on Parkinson’s, my hon. Friend the Member for Newcastle upon Tyne East and Wallsend (Mary Glindon) and Baroness Gale.
I found it surprising and, to be honest, a little shocking that there has never been a full debate in this Chamber on Parkinson’s, so I hope to lend my voice to the approximately 225 people in my constituency, and to the community of some 153,000 people across the UK, who are navigating life with Parkinson’s, along with their loved ones and the dedicated professionals who support them. Yesterday concluded Parkinson’s Awareness Month, but we must commit to doing much more than simply raising awareness; we must act. Awareness is not progress, and people with Parkinson’s can no longer afford to wait.
Parkinson’s is the fastest-growing neurological condition in the world, ironically due mainly to people living longer lives and being diagnosed in their later years. It is sometimes said that people do not die from Parkinson’s, but the condition is life-limiting, complex and relentless. It does not discriminate by postcode, profession, political affiliation or any other characteristic. It strips away not only physical ability, but voice, independence and identity. It affects not only those diagnosed, but their loved ones in profound and lasting ways. There is no cure, no treatment to slow or halt progress and no respite, yet there is hope. There is a path to change, and today I call on the Government and this House to walk that path with the urgency and compassion that the Parkinson’s community deserves.
When I was preparing for this debate, I was given a copy of a poem called “A Jump Too Far”, by Bobbie Coelho, a Parkinson’s UK campaigner who was diagnosed in 2002. I will read it out to put it on the record, because I feel that these words are important:
“I wish you could jump into my shoes for just an hour or so
To know just how I feel, for then you would know
The truth about PD, as far as it goes
I wish you could jump into my shoes when my face freezes
You can’t understand when I talk (I know it’s not easy)
To hear me called a miserable cow
How I wish I could talk happily as they’re doing now
I wish you could jump into my shoes when I can’t move across the floor.
How I admire your movements, so easy and so free
I just wish it could also be me
I wish you could jump into my shoes when I can’t walk down the street
And get stares from the people that I meet
I wish you could jump into my shoes when I can’t do anything at all
And, reluctantly, have to watch my husband do it all
I wish you could jump into my shoes to see a future I don’t want to see
With no cure in sight and I know there never will be
You hear about cancer there’s adverts all around
But awareness of PD there’s not a sound
If you could jump into my shoes
You would see how frightening PD can be”.
Sir Edward Leigh (Gainsborough) (Con)
The hon. Gentleman must be congratulated on bringing forward this most important debate. The charity Parkinson’s UK organises voluntary support groups across the country—the nearest ones to Gainsborough are in Doncaster, Brigg and Scunthorpe. Does he think that the Government and local authorities can do more to encourage people to volunteer? Voluntary action across the country is quite uneven, so that might be one step forward.
Graeme Downie
The right hon. Gentleman has anticipated a point that I will make later, but I could not agree more about the need for volunteer support. Increasing the awareness of that volunteer support at the point of diagnosis is absolutely key, and I will refer to that later in my remarks. I thank him for the intervention.
I found Bobbie’s poem so moving because it reflects precisely what I heard in preparing for this debate, which I suspect colleagues in the Chamber also hear, from constituents living with Parkinson’s. I have been truly touched by the willingness and openness of those constituents, supported by Parkinson’s UK and Cure Parkinson’s, to share their experiences and stories. They do so in the hope that their voices combined will be greater than the sum of their parts, and that together they can improve the journey for those following in their footsteps.
The reality of living with Parkinson’s can be harsh. Although it is categorised as a movement disorder, it can affect movement, speech, swallowing and cognition. It can cause hallucinations, depression and pain. For many, their condition fluctuates unpredictably throughout the day, so what might seem like a good morning can spiral very deeply into a challenging afternoon, and too many people still wait too long for a diagnosis.
I draw the attention of the House to the Movers and Shakers, a group of people with Parkinson’s whose outstanding contribution and production have been a beacon of support for those with Parkinson’s. Some of them are in the Gallery and will be familiar to many in this House, including Gillian Lacey-Solymar, Rory Cellan-Jones, Mark Mardell and Sir Nicholas Mostyn. I thank them for being here today.
Dr Rupa Huq (Ealing Central and Acton) (Lab)
My hon. Friend is making a powerful speech about this very complex condition. He mentioned Rory Cellan-Jones, who is well known as a BBC technology correspondent and, as the person who houses Sophie from Romania, a famous dog lover. He is my constituent in Ealing.
I totally agree with my hon. Friend; the “Movers and Shakers” podcast, which won the Broadcasting Press Guild’s best podcast of the year award, has shown with such humanity and warmth the ups and downs—a lot of downs—of this very sad condition, which is growing. I assure the 153,000 sufferers in this country and the 10 million worldwide that today’s attendance is a reflection not of the importance of this debate, but of electoral events outside this House. Does my hon. Friend agree that the Parky charter to encourage more research into this terrible condition that afflicts so many, which Rory lobbies me quite often about, deserves Government funding? I hope that my hon. Friend the Minister on the Treasury Bench is also listening.
Graeme Downie
If 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.
Katrina Murray (Cumbernauld and Kirkintilloch) (Lab)
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?
Graeme Downie
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.
Saqib Bhatti (Meriden and Solihull East) (Con)
I thank the hon. Member for Dunfermline and Dollar (Graeme Downie) for securing this debate and the Backbench Business Committee for allowing it, and I also thank him for the eloquent way he addressed the issue. I do not think I disagreed with him on a single thing. At the risk of repeating some of what he said, I will try to explain why I am standing here today.
To be honest, because I had seen the stories of Michael J. Fox and Muhammad Ali, I was previously of the opinion that a huge amount of progress had been made in dealing with Parkinson’s disease. I was recently invited to meet people at the Parkinson’s Café in Balsall common in my constituency, where I had a moment of clarity—as Members of this House, we all go through such moments—and understood that there is a huge gap. There were about 30 carers and people suffering from Parkinson’s, who spoke about their conditions eloquently and bravely. This is a really timely debate on a day when many of us will have demands on our time, given the local elections, and it is a great privilege to speak.
As the hon. Member said, Parkinson’s is a hugely debilitating disease. Although a disproportionate number of people get diagnosed in their later years, there is no minimum age threshold, as we saw in the case of Michael J. Fox—in fact, I think he was diagnosed at the age of 29. Parkinson’s can lead to sensory issues, voice changes, facial masking and, of course, movement issues. It really is a significant, life-altering condition, which obviously affects not just the individual but the people around them.
I have been astonished to see the lack of care and support for people with Parkinson’s, for which there a number of reasons. The Parky charter has some reasonable and legitimate requests, to which I certainly lend my support. I will work with the Government and support their endeavours in this area, because there are about 153,000 people in the UK who suffer from Parkinson’s. We have a significant number across the borough of Solihull.
I had the pleasure of meeting Jane Lindsay, who was diagnosed with Parkinson’s in 2019, and a lot of the things that she told me relate directly to the requests in the Parky charter. After receiving a diagnosis and leaving hospital with her husband, Jane did not know anything about the disease. She said to me, “I just wasn’t sure where this will all lead me.” There was a significant lack of support and information, so Jane, who had been in the teaching profession for almost 40 years and spent 17 years as a headteacher, decided that she was going to do something about it. With the help of local GP Sally Frank, she set up the Balsall Common Parkinson’s café in 2022—the date will not be lost on people, as it was at the height of covid. She found that being in touch with other sufferers of Parkinson’s was a “lifeline” because, as the hon. Member for Dunfermline and Dollar said when he recited a poem, she knew people who walked in the same shoes and who shared the same experiences and concerns.
Initially, there were only six members of the group, but it has now expanded to at least 30. They are very lucky, because they meet regularly in the church hall, where they get the facilities for free. I commend the church for offering that support. Jane, her husband and GP Sally Frank, along with friends and family, have done an immense amount of work to raise awareness and funds. They have done charity walks, golf days, sponsored half-marathons, afternoon teas, balls, comedy nights, quizzes and croquet games. They have raised over £230,000, which is really valuable.
However, only four of the 30 people at the Balsall Common meeting that I attended had the support of a Parkinson’s nurse, which shows the sheer need for the specialist care that is required. The chair of the Solihull branch of Parkinson’s UK, Martin Sewell, said:
“This is a great opportunity for us to reach more people affected by the condition in the Solihull area with information and support”.
He specifically thanked the people of that Solihull village, who are able to meet in such a marvellous location at the heart of the community.
I turn to the Parky charter. The hon. Member for Dunfermline and Dollar mentioned the workforce, which is clearly a really acute issue. That is demonstrated by the fact that only four of the 30 people at the meeting had access to a relevant nurse. I would really welcome the Minister’s reflections on how the NHS long-term workforce plan, which the Conservatives instigated when we were in government, will help to give more support to sufferers of Parkinson’s.
As the hon. Member mentioned, there is a significant lack of data on Parkinson’s. I tried to get the figures for how many people in my constituency suffer from Parkinson’s from the House of Commons Library. We were given the waiting lists for neurology departments, but the number of Parkinson’s sufferers was not reported or published anywhere. That is a fundamental issue that I would encourage the Government to look at, and it should certainly be addressed at the very first instance. Some 55% of those waiting for neurological referrals wait more than 18 weeks, so a significant number of people have to wait for a very long time. Those who, like Jane, have very little information are in effect left to their own devices to figure out the next step.
I greatly support the Parkinson’s passport, which the Parky charter calls for, not least because it would provide instant access to a blue badge and to free prescriptions. This seems to me to be a logistical or operational need, so if a doctor is able to assess someone and say that they have Parkinson’s, that should set the individual down a neurological pathway that allows this stuff to happen almost instantly. It is something that people with Parkinson’s should not have to worry about. We know how debilitating the disease is, how people will deteriorate and that there is no cure—such individuals are set down that path—so we should look to alleviate some of their concerns.
The hon. Member for Dunfermline and Dollar mentioned PIP, and one of the things raised with me at the café was the issue of reassessments and of having to go through all that again. If the reassessments are to see how the individual has deteriorated and what further support needs to be given, that is different from having to go through the rigorous PIP reassessment to see if they are still entitled to it, which is really stressful for people who are already in a very stressful situation. I would greatly support anything that can be done about that, because PIP, certainly in this instance, is a basic lifeline to maintain a level of wellness. I would be interested to hear the Government’s thinking, because while there has been a lot of talk about PIP encouraging people into work, we know that these people are only going to deteriorate, so what support can be given?
The real question here is about research and development. I know that the Government have committed £20 billion to R&D funding, but I would be interested to know what their thinking is about supporting the treatment of Parkinson’s. The hon. Member mentioned this, and I join his call for more funding in this field. I did not realise that a lot of the treatments were developed 50 or 60 years ago and that there has been very little progress since, so I would very much support any increase in funding.
My remarks have been limited because the hon. Member went through the issues comprehensively, and I thank him for doing so. To steal one of his lines, the Parky charter is really a manifesto for dignity. Probably all of us across the House would agree that we do this job to help the most vulnerable, so if we can make changes to give these individuals dignity, I will certainly support them.
Chris Kane (Stirling and Strathallan) (Lab)
I thank my hon. Friend the Member for Dunfermline and Dollar (Graeme Downie) for securing this important debate. Parkinson’s UK tells me that there are about 230 people living with the condition in my constituency of Stirling and Strathallan. Across Scotland, almost one in six people with Parkinson’s are under 65 and one in three are over 80, which is a reminder that this condition affects people of all ages.
One of those people is my constituent John Lange, who was diagnosed in 2006 at the age of just 43. In 2012, John co-founded the Forth Valley Young Parkinson’s group as a space for people of working age to share experiences and support one another. In 2014, John and his wife, Anne, opened a small fundraising shop in St Ninians. Over the last decade, that shop has grown into a well-known charity business in Stirling city centre, raising thousands for Parkinson’s UK and Parkinson’s research. It’s called Something Old Something New, and I would encourage anyone visiting Stirling to drop by Murray Place and see the brilliant work John and Anne are doing.
Parkinson’s is a condition that affects not just the body, but a person’s independence, confidence and ability to stay connected, so while treatment is crucial, having the right support networks in place matters just as much. Parkinson’s UK supports over 45 local groups across Scotland and works with more than 300 volunteers. These groups provide everything from exercise and dance classes to singing and art sessions, helping people to stay active and feel part of a community that understands what they are going through.
In Stirling and Strathallan, we have seen that community spirit in action. MXP Fitness, a local gym, runs boxing sessions designed specifically for people with Parkinson’s, with support from Parkinson’s UK’s physical activity grant programme. These sessions, led by former Stirling Albion player Craig Comrie, are all about building strength and mobility in a safe and supported way. As Craig put it to the Stirling Observer recently:
“No-one is getting knocked out…no one is Tyson Fury!”
However, the benefits are real, and the feedback has been overwhelmingly positive.
For those who prefer football to boxing, the Stirling Albion Foundation has just launched a new walking football session for people living with Parkinson’s. Held on Tuesday mornings, the sessions promote movement, co-ordination and connection. From what I hear, there is a lot of laughter, too. I want to thank the team at Stirling Albion not just for this new initiative, but for their wider work across the community. I also wish them a very happy 80th birthday in 2025.
These activities—the boxing, the football, the local fundraising—are all examples of how communities are stepping up to support those living with Parkinson’s. It is uplifting to see such creativity and compassion at a local level, and I know that is replicated in communities right across the United Kingdom.
I want to mention a remarkable local figure, my constituent Kay Mair. This year marks the 35th anniversary of Parkinson’s nurses, whose specialist knowledge and experience make a huge difference to patients and families. Kay is one of the longest-serving Parkinson’s nurse specialists in Scotland, having worked in the field since 1996. She is NHS Forth Valley’s lead nurse for Parkinson’s and a founding member of the Alliance of Scottish Parkinson’s Nurse Specialists. Last month, she was invited to St James’s Palace for tea with the Duchess of Gloucester in recognition of the incredible work she has done for nearly three decades.
Kay is exactly the kind of specialist nurse we need more of, which is why investment matters for the treatment of Parkinson’s and for the NHS in general. In England, the Labour Government committed almost £26 billion to the NHS in the recent Budget, and that is already starting to make a difference. Since the election, there have been an additional 3 million appointments, with waiting lists falling by nearly 50,000 in deprived areas, which is helping people get back to work, back to their lives and back to health.
In contrast, in Scotland, despite a record Budget settlement, one in six Scots is waiting for care and over 100,000 have waited for more than a year. These are not just numbers; they are our neighbours, friends and constituents who are left in limbo by a system that needs urgent attention. NHS staff across Scotland are doing their best, but they are being let down by a lack of strategic leadership and long-term planning by a poorly performing SNP Scottish Government.
While the challenges are real, so too is the determination of communities across the country to meet them. I pay tribute to Parkinson’s UK for the incredible work it does, not just in supporting people and raising awareness, but in campaigning for better services and leading research into a cure. I also thank all those working behind the scenes, such as the researchers striving for breakthroughs, the nurses delivering expert care and the many volunteers bringing energy, kindness and hope to their communities every day. I also want to recognise the thousands of individuals who raise money by undertaking personal challenges all around the country and internationally. My constituency Kim Somerville from Auchterarder has recently returned from an eight-day trek across Costa Rica, which has raised more than £3,000 for Parkinson’s UK.
Parkinson’s may be a tough diagnosis, but thanks to people like John, Anne, Kay, Craig and Kim, and the team at Parkinson’s UK and all the staff in our NHS, no one has to face it alone. Together, we can build a future in which everyone affected by Parkinson’s feels supported, empowered and heard.
Seamus Logan (Aberdeenshire North and Moray East) (SNP)
First, I thank the hon. Member for Dunfermline and Dollar (Graeme Downie) for securing this important debate. I agreed with everything he said in his excellent speech, except for one small thing. Given the importance of the topic, I was shocked to find that the last time Parkinson’s was debated was in 2017. My researchers may be wrong on that point, but that is what I am led to believe. I hope this discussion is of such a calibre that it will make up for the long time since we had that debate. All my remarks today are entirely in the spirit of cross-party co-operation. I have no intention whatever to make any cheap party political points, either in relation to the UK or to Scotland.
I had a career in health and social care of more than 30 years, 17 of those as a commissioner and a regional director. I have to say, to my eternal shame, that Parkinson’s rarely got a look-in when we looked at physical disability and sensory impairment. Of course it did, but not to the extent that it should have.
I pay tribute to those who are living with Parkinson’s and to their families. As has been said, the condition affects around 153,000 people in the UK, including at least 257 people in my constituency. I also pay tribute to the volunteers who do tireless work to support people living with Parkinson’s. Parkinson’s UK does incredible work to support those across the UK and in my constituency, where it runs support groups in both Peterhead and Fraserburgh. Tasha Burgess from Parkinson’s UK has done amazing work, particularly for me today, and I know that she might consider extending the work of those support groups to Banff, Macduff and Buckie in the western part of my constituency. The groups are vital to delivering support in the community. Just knowing that there is a support network nearby of people going through the same thing, staffed by knowledgeable volunteers, makes such an incredible difference to people going through what can be the hardest time of their lives.
Research has been mentioned. It is right that research funding goes to areas such as cancer, diabetes and motor neurone disease, but sadly Parkinson’s is the poor cousin in that regard. The hon. Member for Dunfermline and Dollar pointed out that it is the fastest-growing neurodegenerative condition in the world, yet Parkinson’s UK tells me that there is no treatment to stop or slow down the condition, only to deal with the symptoms. That is something that this Parliament must address.
I want to focus minds in the Chamber today on how the benefits systems treats people living with Parkinson’s. Many Members have already raised concerns about changes to PIP eligibility announced by the UK Government in March. It goes without saying that the changes may have a severe and negative impact on those living with Parkinson’s. That can be contrasted against the adult disability payment introduced by the Scottish Government, which replaced PIP.
People with Parkinson’s and those involved in the application process have reported that the ADP assessment is much more accurate and compassionate than that for PIP. Importantly, the ADP application uses paper-based evidence, as opposed to an in-person assessment, which is reported to poorly serve those living with Parkinson’s. The issues of face-to-face assessments stem from neither assessors nor the criteria being able to capture the reality of a condition that fluctuates as heavily as Parkinson’s.
I am sure the Minister is paying attention to me, but I am aware that when the work capability assessment was dropped from universal credit assessments, the Westminster Government did not communicate that to the Scottish Government. I am hopeful that going forward there will be a better level of communication between the Governments in that regard. In March 2023, the Work and Pensions Committee, reporting on health assessments for benefits, stated that
“when the Scottish Government publishes its planned evaluation”—
on ADP—
“DWP should learn from the results and consider what changes, if any, it should make to its benefit assessments.”
I would be keen to hear the Minister’s thoughts on that in her closing remarks.
The principles embedded within our welfare system should be a matter of principle for all MPs. We need to prioritise systems that treat people with the dignity and respect they deserve. There is an opportunity to learn from the Scottish Government’s approach to disability benefits. I strongly encourage the UK Government to consider replicating our approach in Scotland to deliver better outcomes for those living with Parkinson’s.
Josh Dean (Hertford and Stortford) (Lab)
I thank my hon. Friend the Member for Dunfermline and Dollar (Graeme Downie) for securing this important debate and for his eloquent speech. There was not a word that I would disagree with. As he described, Parkinson’s is the fastest-growing neurological condition in the world and around 153,000 people live with the condition in the UK.
In April, we marked World Parkinson’s Day and Parkinson’s Awareness Month. As part of Parkinson’s UK’s event here in Parliament, I had the opportunity to hear directly from people affected. I am especially grateful to Angie, from Parkinson’s UK, for taking the time to share her experience with me, and discuss how we can improve care and support for people living with Parkinson’s disease. It is for people like Angie in Hertford and Stortford that I wanted to contribute to today’s debate. For me, as I know will be the case for other hon. Members, it is personal. Through the experiences of friends and loved ones, I have seen at first hand the impact of a Parkinson’s diagnosis. I would like to briefly share their stories today.
First, the mum of one of my closest friends was diagnosed with Parkinson’s in 2018, a person whom it would be no exaggeration to describe as one of the warmest, kindest and most generous people you could meet—the kind of mum who makes you feel like part of the family and always insists you stay for dinner. She, too, has benefited hugely from the Movers and Shakers group. With the support of Parkinson’s UK, she and a group of friends—all working-age people diagnosed with Parkinson’s—set up the Herts Parkinson’s wellbeing directory. Working with the NHS and other local organisations, their work ensures that Hertfordshire residents diagnosed with Parkinson’s can quickly and easily find information and access local support to help them manage their condition. Residents can access their directory by visiting hertfordshire.parkinsonsuk.group. I thank them for their inspirational work supporting others with their diagnoses.
I also want to talk about Andy. When I first met Andy, he was introduced to me as the husband of my local Labour party’s long-standing—or perhaps long-suffering—election agent, Brenda. I was about 19 at the time, standing in a local council election, in what used to be true blue Hertfordshire, that I was destined to lose. Little did I know just how important Andy and Brenda would be to me by the time I was elected to this place in July last year. In so many ways, I would not be stood here today as the Member of Parliament for Hertford and Stortford were it not for Andy and Brenda.
When I was preparing for this debate, I reflected on the fact that I could not pin down when or how Andy had told me about his Parkinson’s diagnosis. That is a testament to Andy’s innate ability to turn topics that others might find difficult to discuss into everyday conversation—indeed, I learned much about myself through simple conversation while travelling from visit to visit with him during the general election—but it is also a testament to his willingness to speak openly about his Parkinson’s, breaking down the stigma for others with a diagnosis, and knowing that it does not define him and that it can make it easier for others to talk about their condition. Today, Andy Pellant is not just a mentor to me, but a friend. It is my privilege to put his name on the record in this debate.
I would like to take this opportunity to pay tribute to Julie Walker, who has been writing her regular “Parkinality” column in our local newspaper, the Bishop’s Stortford Independent, for the past seven years to help people to better understand life with Parkinson’s. Diagnosed aged 44, every year Julie does something to mark Parkinson’s Awareness Month in the hope that a cure will be found and that there will be no need for another. This year, Julie has compiled all the poems she has written about living with the condition into a book, with the proceeds going to Parkinson’s UK and Cure Parkinson’s. I encourage everyone in Hertford and Stortford, and in this Chamber, to support her work.
I would like to take this opportunity to highlight some of the positive work being done in our community to support those living with Parkinson’s. I was really pleased to read this week that Everyone Active is partnering with Parkinson’s UK for the fourth year running to provide residents with Parkinson’s with free fitness memberships. That means patients in our community will be able to access gym facilities, swimming pools and exercise classes at Hartham leisure centre in Hertford and Grange Paddocks leisure centre in Bishop’s Stortford, alongside up to three of their carers. I encourage any residents in Hertford and Stortford living with Parkinson’s to take advantage of that support.
I welcome the work that this Labour Government are undertaking to deliver the 10-year health plan for England, which will radically reform how people in Hertford and Stortford with long-term conditions like Parkinson’s are treated on the NHS. With hundreds of thousands of patients in England still on the waiting list for neurology services, and almost half waiting for more than 18 weeks to start their treatment, I similarly welcome how the elective reform plan will help to deliver more neurology appointments every year. No one should lay awake at night worrying that their condition is getting worse while they wait to see a specialist. By providing extra appointments, scans and operations in the evening and at weekends, I know this Labour Government will clear the backlog for neurology appointments. However, we can go further, and I do have a few policy questions I would like to raise; I would be grateful if the Minister could reflect on them in her response.
First, as other hon. Members have said today, a number of residents have written to me calling on the Government to implement the five steps set out in the Parky charter, which my hon. Friend the Member for Dunfermline and Dollar set out eloquently. The points around speedy specialists, instant information, a Parkinson’s passport, comprehensive care and a quest for a cure are incredibly important. I will touch on the Parkinson’s passport, because a number of constituents have written to me raising the matter of free prescriptions, to which people with Parkinson’s are entitled in Scotland, Wales and Northern Ireland, but not in England.
Supported by major Parkinson’s charities, delivery of the charter would help to deliver timely diagnoses, comprehensive care and dignity for all those living with Parkinson’s disease. I know the Minister takes these matters incredibly seriously and will have read the charter in detail, so I would be grateful if she could share what consideration she has given to it in her response.
When I spoke to Andy ahead of today’s debate, he highlighted how almost everyone he has met with a Parkinson’s diagnosis recognised that with the benefit of hindsight, the signs of their condition were present years before they were diagnosed. Has the Minister therefore considered the potential benefits of a national education programme to help people to identify the early signs of Parkinson’s disease?
I know that hon. Members across the House will have their own experiences or will have known someone with Parkinson’s disease. We have heard many moving speeches today, and I am sure we will hear more. The unity shown across the House today in support of those living with Parkinson’s and in support of finding a cure is to be commended, and I am grateful for the opportunity to have contributed to the debate.
Jim Shannon (Strangford) (DUP)
I thank the hon. Member for Dunfermline and Dollar (Graeme Downie) for leading the debate with such an emphatic and detailed speech. I also thank his staff for ensuring that all my office staff had access to the most up-to-date information on our constituencies; there was something the hon. Gentleman knew about my constituency that I did not know until his staff sent me that helpful information. It helps us all to consider the issues.
Parkinson’s is a devastating condition that impacts thousands across the United Kingdom. I am pleased to be here to support this debate and to speak on this subject, which is a big issue in my constituency; more people are moving to live in my constituency, who—by and large—are of a certain generation, and because of that, are more susceptible to Parkinson’s, with other complex needs.
I want to speak specifically about PIP, which is a big issue for me and my staff; I have one staff member who does nothing else most of the time. It is always important to me to represent my constituents, and, as DUP health spokesperson, these issues are very close to my heart.
We all know someone who has Parkinson’s, whether it be a family member, a friend or someone else, and representing that is half the battle to achieve change. We have heard figures outlining the scope of this issue across our country. To give my local perspective, some 4,000 people have been diagnosed with Parkinson’s across Northern Ireland, and the majority are aged 70 to 89. In my constituency, we have 229 people suffering with Parkinson’s.
The most recognised impacts of Parkinson’s include tremors, bradykinesia, instability and stiffness. People with Parkinson’s can feel freezing cold nearly all the time, even when the rest of us feel warm. There are also many non-motor symptoms that people with Parkinson’s will face, including fatigue and cognitive changes.
I was pleased to attend Parkinson’s UK’s parliamentary drop-in earlier this month, where it was great to discuss the personal independence payment and how the changes will relate to people with Parkinson’s. I have also submitted numerous parliamentary questions on the matter, high- lighting the real scope of the issue. I have been contacted by many constituents expressing their concern for family members who have the disease. Parkinson’s UK has revealed that people suffering from the disease incur extra costs of some £7,500 per annum on average; when loss of earnings is factored in, that figure can rise to £22,000.
Personal independence payments are therefore crucial to help with the additional costs that come with this sickness. PIP is not an incentive not to work—I get really quite annoyed when I hear people saying that. People want to work, but sometimes their disabilities restrict them from doing so. PIP is not means-tested, and is unrelated to a person’s employment status.
The supposed change that has been discussed is that people will be eligible only if they score four or more points in one category, which will directly impact so many people who suffer a wide range of issues stemming from their illness. I have real concerns about the proposals that Government are looking to bring forward.
As the hon. Member for Aberdeenshire North and Moray East (Seamus Logan) has referred to previously, people with Parkinson’s are on average 10% more likely to be inaccurately assessed for PIP at the mandatory reconsideration stage than claimants with other conditions. That is shocking. When someone with Parkinson’s makes a PIP application, the person who looks at it needs to understand the condition. My office win almost 70% of all our mandatory reconsiderations and appeals. That is not a criticism of people, by the way—it is an observation, which tells me there is something wrong with how the applications are looked at.
Clearly, there is a call for social security provisions, especially for people with Parkinson’s, which is being overlooked. I urge the Minister to look at this matter together with the Secretary of State for Work and Pensions. As always, that is meant as a constructive comment.,
I am a strong supporter of investing in research. Based at Queen’s University Belfast, Parkinson’s@NI is a collaborative hub that connects researchers, healthcare professionals and the local community. Such hubs are crucial in helping to improve the quality of life for people with Parkinson’s. More funding will enable research in digital modernisation and make a pivotal mark on brain health research. There is so much work to be done. If we can all work together, we can do more to find a cure for diseases such as Parkinson’s.
For Parkinson’s Awareness Month, let us do all we can to support and progress better opportunities for people. I strongly urge the Minister to look at the issues around benefits and social security in particular. I look forward to working closely alongside colleagues across the Chamber, and Ministers, to lobby for more change and for better provision for people with Parkinson’s.
Jas Athwal (Ilford South) (Lab)
I thank my hon. Friend the Member for Dunfermline and Dollar (Graeme Downie) for securing this vital debate, for speaking so eloquently and for highlighting the work we still have to do and the shortcomings we still have to overcome. I also thank Members across the Chamber for making such moving and powerful speeches to make the point that we must do more.
Every hour, two people’s lives are forever changed by a Parkinson’s diagnosis. That is some 18,000 men and women every year receiving a diagnosis that casts a shadow over their future. One of those people is my constituent, Jagdeep—a husband, a father, a son, a brother. He shared with me that when he received his diagnosis, he broke down right outside the hospital. Jagdeep is a strong personality with strong physical attributes, with a black belt in karate. He grew up in the east end and is tough as nails, but Parkinson’s broke him down that day.
Parkinson’s Awareness Month provides a precious opportunity to raise awareness about these personal battles, to discuss how we can support our constituents with the disease and to spotlight the resilience of those with Parkinson’s.
Today, I wish to share Jagdeep’s story. Although Jagdeep’s initial diagnosis was overwhelming, he told me how his faith anchored him and gave him the courage to turn this challenge into a mission of Seva, a Sikh principle of selfless service. In 2022, he raised £15,000 for Parkinson’s UK, climbing Mount Kilimanjaro with his daughter. Two years later, he trekked the Annapurna circuit in Nepal, and, most recently, he travelled to Uganda to support those with Parkinson’s. He has achieved great feats abroad. At home in Ilford he has achieved something even greater: he has built a community for those living with Parkinson’s. Having taught martial arts for 35 years, he launched the Dopamine Warriors Boxing Club, a free weekly boxing class designed specifically for those with Parkinson’s.
Exercise such as boxing has been proven to slow down the progression of Parkinson’s. For the nearly 50 attendees coming to his classes from across east London, Jagdeep’s club has proved a lifeline. Attendees come from all walks of life, backgrounds and ethnicities. These classes have become a space without stigma—a space where having tremors does not set people apart, and a space where people can connect with one another.
I have one story that particularly moved me. Jagdeep mentioned that a new attendee arrived at the class in a wheelchair as a result of his symptoms. By the end of his first session, he left the class on his own two feet. The camaraderie in the class gave him the encouragement that he needed to be able to stand up. I am glad that part of the Labour Government’s 10-year plan for the NHS is shifting care into the community.
In his own corner of the world, Jagdeep is making that vision a reality. His classes demonstrate that although we may not yet have a cure for Parkinson’s, we do have the ability to improve people’s lives now, by building spaces, like the boxing club, to provide people with a sense of belonging, community and encouragement. We owe it to Jagdeep and to every other person battling this disease to match their courage with our action—by fighting for our NHS, by investing in our community care, and by ensuring that, regardless of a cure, no one faces Parkinson’s alone.
Kirsteen Sullivan (Bathgate and Linlithgow) (Lab/Co-op)
I wish to thank my hon. Friend the Member for Dunfermline and Dollar (Graeme Downie) for securing this debate, which has been incredibly powerful and impactful. I also wish to thank the hon. Member for Ilford South (Jas Athwal) for sharing that incredibly powerful and emotional story of Jagdeep’s journey. I am sure that is something that will remain with many of us today.
I also thank my constituents who wrote to me to share their personal stories. It is often not easy to reach out to someone whom we do not know and whom we have never met before and share the most painful aspects of our life. Like my hon. Friends, I was shocked and surprised to hear that Parkinson’s has never been fully debated in this Chamber—in 2017, there was an Adjournment debate on young-onset Parkinson’s—but we are righting that record today.
Across the UK, 153,000 people are living with Parkinson’s, more than 13,000 of whom are in Scotland. The condition often comes with a range of complex conditions, as we have heard, affecting speech, mobility and sleep. Some 30% of those living with Parkinson’s also have dementia, which greatly impacts their care needs, yet far too many go without any information on the support services that are available after their diagnosis. Both those with Parkinson’s and their caregivers experience a long and complex care journey, which all too often isolates them from society. We have already heard today about the significant and harrowing impact that that can have on mental health. The experience of Parkinson’s disease is heartbreaking for us to hear about today, but it is even more difficult for those who have to deal with it and live with it, day in and day out.
When I think of Parkinson’s, I recall someone whom I once knew many years ago. His road to diagnosis was long. He was a young man, a bowler, and was at the heart of his club both on the green and in the clubhouse. But it became clear that something was very wrong as he started to stumble and struggle to walk. That often led to hushed whispers of concern as to what could possibly be wrong in someone so young. He was unaware of what was causing the changes to his body, impacting his mobility and co-ordination and, as a result, participation in the sport and the sporting community that he loved. These were in fact the early signs of young-onset Parkinson’s, the symptoms of which can easily be misattributed to other illnesses.
Young-onset Parkinson’s impacts one in 20 of those living with the condition. I saw at first hand how a lack of awareness of Parkinson’s symptoms and young-onset Parkinson’s can cause anxiety, confusion and distress and can result in delay in seeking help. This just highlights how important it is to have well-funded and comprehensive medical and community support for those living with Parkinson’s, but, unfortunately, these stories are not unique. From constituents emailing us with their worries and personal stories from friends and family, we each know how devastating this disease can be.
Across Scotland, the situation is dire. The waiting times for diagnosis are deeply distressing, and over half of Parkinson’s patients in the Borders, Ayrshire and Arran experience waits of over 48 weeks. In my constituency, covered by Forth Valley NHS board and NHS Lothian, wait times can be as long as 24 weeks for more than a quarter of patients. These waiting lists lead to delayed diagnoses, leaving many people struggling alone and without help. The symptoms can be frightening, and demand dedicated support. It is imperative that the Scottish Government get a shift on. They need to use the record-breaking settlement from this Government to start to tackle those wait times, bring clarity to people at a time of great uncertainty and deliver the support that they need, because the condition goes beyond the physical.
I welcome this Government’s investment to bring down neurology waiting lists to speed-up diagnosis times, but we cannot rest on our laurels because there is too much work to be done. By investing in research, improving healthcare access and fostering a supportive community, we can offer hope and improve the quality of life for many. As MPs, MSPs, and local representatives, it is our duty to ensure that those living with Parkinson’s disease and their families have access to the best possible care and support. We must recognise that key milestones have been achieved by campaigners and research scientists to alleviate the pain and isolation caused by the condition. We must continue to raise awareness about Parkinson’s disease, reduce the stigma and ensure that those affected feel heard, understood, and supported. The public awareness raised in recent years is so important to those facing years ahead with this disease. They must know that they are not alone and where they can access help.
I would like to share my gratitude for and commend the work of Parkinson’s UK, which has been invaluable. We have heard much today about its fantastic work across the country. I would also like to recognise the advocacy of Billy Connolly and his bravery and honesty in talking about his diagnosis and his life with Parkinson’s. He has shown his characteristic ability to broach even the darkest of subjects with humour, and he has that cut-through that can often be very difficult for some of us politicians to achieve. He has sparked a much-needed conversation.
Thanks to the event recently organised by my hon. Friend the Member for Dunfermline and Dollar, I had the pleasure and privilege of meeting Dave Clark, former TV sports presenter and fierce advocate and successful fundraiser for Parkinson’s UK. He took the time to speak to me about the unpredictability of his condition and how it can change on a daily basis. We need to take these personal testimonies into account when considering any changes to the welfare system. Dave’s experience reinforces the points we have heard today.
Finally, I am glad that this debate could take place in the Chamber, as the centre of our democracy. In this House is where support for those living with Parkinson’s must be the loudest.
Patricia Ferguson (Glasgow West) (Lab)
I congratulate my hon. Friend the Member for Dunfermline and Dollar (Graeme Downie) on securing this important debate at the end of Parkinson’s Awareness Month.
I would like to begin by paying tribute to my old friend and former colleague Margo MacDonald, SNP Member of this House briefly in the 1970s and Member of the Scottish Parliament for the SNP and as an independent from 1999 until her death in 2014. Anyone who knew Margo will remember that she was a force of nature and that anything she did was done with her typical determination, wit and good humour. I credit Margo with my limited understanding of Parkinson’s and its variability, because for all the time she was in the Scottish Parliament she had Parkinson’s, but it did not stop her being one of the most effective communicators and advocates for her constituency.
In my constituency, some 222 people are believed to be living with Parkinson’s as we speak. I want to thank those who care for them—professionals, family members and volunteers alike—for their hard work and commitment. As we have heard, there is no cure for Parkinson’s, and current treatment can manage only some of the symptoms. It can be a frightening disease, and one that can lead to depression and despair.
In Scotland alone there are approximately 30 new diagnoses every week. In 2024, Parkinson’s UK in Scotland produced an excellent report called “Scotland Can’t Wait”. In the report, Parkison’s UK in Scotland highlighted the many challenges that people with Parkinson’s currently face and the problems that will arise if the challenge of the increasing number of people being diagnosed is not addressed. The report drew on experience and robust data and makes some very important points.
It highlights that investing in professional staff who can offer the kind of specialist treatment that people with Parkinson’s need would be an important step forward. Existing staff are already stretched, and if action is not taken soon they will be pushed to breaking point. Ensuring that people get the appropriate medication when it is needed, whether they are in hospital or at home, is also vital. Crucially, the mental health impacts of Parkinson’s need to be addressed, including Parkinson’s dementia, which can be frightening for patients and their families.
A recent freedom of information request revealed that since the year 2020, less than half a million pounds was spent by the Scottish Government on research into Parkinson’s disease. By my calculations, that is something like £34 per person suffering from the disease in Scotland. That seems to me to be a woeful amount of money. I recognise that the effort to find a cure for Parkinson’s will inevitably have to be a global exercise, and one that this Government, I am sure, will want to play a large part in. But everyone has to get their act together and up their game, including the Scottish Government. At the end of the day, we want to find a preventive approach to Parkinson’s, but a cure along the way would be helpful too.
Parkinson’s UK in Scotland called its report “Scotland Can’t Wait”, and rightly so. The 30 people diagnosed every week cannot wait, and the 222 people in Glasgow West certainly cannot either. It is time for Governments on both sides of the border to act and work with Parkinson’s UK and Parkinson’s UK in Scotland to ensure that we do better for people with Parkinson’s for their families and the staff who support them. Parkinson’s UK has shown us the way; it is now time that we follow it.
Madam Deputy Speaker (Ms Nusrat Ghani)
We now come to the Front Benchers. I call the Liberal Democrat spokesperson.
Alison Bennett (Mid Sussex) (LD)
I thank the hon. Member for Dunfermline and Dollar (Graeme Downie) for bringing forward this important debate, and I thank all Members who have contributed. Everyone has made excellent contributions that were thoughtful and moving.
Right now in the UK around 153,000 people are living with Parkinson’s, and that number is set to increase to 172,000 by 2030. Richard from Burgess Hill in my constituency is one of those many thousands. I count Richard as a friend; he is someone I greatly admire for his courage and tenacity. I was lucky enough to speak to him recently and get a brief insight into his life with Parkinson’s. He told me that something he has noticed since his diagnosis is increased anxiety. He says that he now gets anxious about everyday things in a way that he never used to. He also said that the part of experience he has found most depressing is knowing that it is, in his words, “a one-way street”, where his condition can only be managed by using ever-increasing levels of medication.
From even a short conversation with Richard, it is clear just how complex people’s experiences can be. It is also clear to me that we need to do better, as many hon. Members have said, and that we have solutions already but we just need to get on with it. Parkinson’s is the fastest-growing neurological condition in the world. It is progressive, it fluctuates, and it affects everything from movement, swallowing, sleep and speech through to mental health. There are over 40 symptoms, and each person’s experience is unique. Half of those living with the condition, like Richard, experience anxiety or depression, and up to 60% can develop psychosis. They are also six times more likely to develop dementia.
Parkinson’s UK has identified some of the major failings in care today. They include long waits for specialists, a lack of access to expert multidisciplinary teams, people not getting their medication on time in hospital, and limited mental health and dementia support. There is also a postcode lottery when it comes to advanced treatments such as Produodopa and deep-brain stimulation. Those failings have consequences: unplanned hospital stays, severe complications and worsening mental health. Parkinson’s costs the UK an incredible £3 billion a year. In England alone, unplanned hospital admissions cost £277 million. So this is not only a health crisis but one with significant economic impacts.
I and my Liberal Democrat colleagues believe that the system must change urgently and that the Government have to act. First, we have got to fix the basics. To do that, we need to review the medicines supply chain. People with Parkinson’s must get their meds on time. We also need to expand the MHRA’s capacity, reversing the 40% workforce cut, and reducing the time for treatments to reach patients.
Secondly, we need to put care and support front and centre. We can do that by giving people with Parkinson’s access to a named GP—someone who knows their story and their condition—and by making mental health a priority, not an afterthought. That means regular mental health check-ups, easier access to services through walk-in hubs and restoring the mental health and dementia care targets that the Government have abandoned.
Thirdly, the Government must step up and support carers. Behind every person with Parkinson’s, there is often someone else who cares for them; someone who is quietly exhausted. We must provide respite breaks and ensure that carers have access to paid leave. We need to fix the broken social care system once and for all. It is time for those cross-party talks—no more delays. As I have said in this place before, we will clear our diaries to get those talks happening. This issue is simply too important for diary clashes. I wonder whether the Minister can give us any clarity and a date on those vital talks.
Finally, we have got to help people live and work with dignity. I and my Liberal Democrat colleagues are campaigning for: a new right to flexible work; better accessibility standards for public spaces; a stronger blue badge framework; the incorporation of the UN convention on the rights of persons with disabilities into UK law; and the closing of the disability employment gap. We can do that if we implement a dedicated strategy for disabled workers, simplify the application process and introduce adjustment passports so that workplace support follows the person, even if their job changes.
This is a health issue, an economic issue and a social justice issue. As others have said, it is about human dignity. We owe it to people living with Parkinson’s that we must do better, not some day but now. Let us build a future where those with Parkinson’s like Richard get the proper help and support they deserve.
Gregory Stafford (Farnham and Bordon) (Con)
It is a pleasure to speak on behalf of His Majesty’s Opposition in this most important debate. I commend the hon. Member for Dunfermline and Dollar (Graeme Downie) for securing it and for his heartfelt and impassioned speech. I was particularly moved by the recitation of Bobbie’s poem and the highlighting of the amazing “Movers and Shakers” podcast.
I thank all hon. Members for their heartfelt contributions on behalf of their constituents and those across the country living with Parkinson’s. We heard inspiring stories such as that of Jagdeep, as raised by the hon. Member for Ilford South (Jas Athwal), and John and Anne of Something Old, Something New, as raised by the hon. Member for Stirling and Strathallan (Chris Kane).
I note that, as a result of other events in the country, our debate has had a relatively Scottish flavour, but Parkinson’s Awareness Month is UK-wide and a time to focus national attention on the condition that affects over 150,000 people here in the UK. That number that continues to rise. The disease impacts not just individuals but families, carers and communities. It challenges both body and spirit, demanding a comprehensive response from all sectors of society.
We often learn about Parkinson’s from friends, family and colleagues, as was highlighted so powerfully by the hon. Member for Glasgow West (Patricia Ferguson). For me, it is a deeply personal issue. A close family member was initially diagnosed and treated for Parkinson’s disease. More recently, that diagnosis was revised to progressive supranuclear palsy, or PSP, which is a rarer and unfortunately more aggressive condition. That journey from uncertainty to diagnosis and then living with a progressive neurological condition has profoundly impacted my family. I have witnessed at first hand the critical importance of early diagnosis, specialist care, emotional support and, above all, hope.
Since becoming a Member of Parliament, I have spoken to many constituents across Farnham, Bordon, Haslemere, Liphook and the surrounding villages affected by Parkinson’s. I have been inspired by their bravery and strength in responding to the cruel difficulties that life has thrown at them.
Parkinson’s has no cure, as hon. Members have said, and that is one of the many challenges that people and their loved ones face on diagnosis, but thanks to advances in research and medicine, there are ever improving treatments to help manage and relieve symptoms. As a result, many people with Parkinson’s can have a normal or near-normal life expectancy. Physiotherapy, occupational therapy and medication can help relieve symptoms and enable people to stay living independently at home for longer.
In my constituency, people with Parkinson’s have benefited from free membership of local leisure centres in Whitehill and Bordon and in Haslemere, helping them to keep active and manage their symptoms, but there is so much more to do, whether on research, diagnosis, treatment or—hopefully—a cure.
Last month, ahead of World Parkinson’s Day, like the hon. Members for Hertford and Stortford (Josh Dean) and for Strangford (Jim Shannon), I met Parkinson’s UK and individuals affected by the condition. I heard powerful accounts from volunteers about the daily challenges they face from mobility issues and speech difficulties and the emotional toll on themselves and their families. I commend Parkinson’s UK for its tireless work in providing advice, support and advocacy at every stage of the Parkinson’s journey. Help is available via its website and helpline. I encourage anyone who needs support to reach out. However, as the hon. Member for Bathgate and Linlithgow (Kirsteen Sullivan) mentioned, there are still many who do not know what support is out there; that must change.
I praise the local charities and volunteers across my constituency and across the country, as raised by my right hon. Friend the Member for Gainsborough (Sir Edward Leigh), and the work they do. Like the hon. Member for Aberdeenshire North and Moray East (Seamus Logan), I have experienced working in healthcare, and during my tenure with the NHS Getting it Right First Time programme I was involved in the publication of the neurology national speciality report. The analysis in that report highlighted significant variation in neurology services across England, particularly in managing conditions such as Parkinson’s disease. Key conclusions included the urgent need for timely access to specialist neurology services, the development of standardised care pathways for chronic neurological conditions, the expansion of the neurological workforce, including advanced practitioners, and much better data, as my hon. Friend the Member for Meriden and Solihull East (Saqib Bhatti) mentioned. Those recommendations are essential to reducing disparities and improving outcomes. Will the Minister commit to addressing those three priorities in more detail beyond general references to cutting waiting lists and updating the workforce plan?
Medical research in the UK is funded by both public and private sectors as well as charities and non-governmental organisations. In 2022, nearly £250 million was spent on neurological research including Parkinson’s and other neurodegenerative conditions across 1,873 individual projects. Parkinson’s UK and Cure Parkinson’s alone contributed £2.6 million.
Under the previous Conservative Government, we invested more than £79 million in research into Parkinson’s disease between 2019 and 2024. In 2022-23, the National Institute for Health and Care Research enabled 114 studies related to Parkinson’s through its infrastructure. We also rolled out a new treatment for advanced Parkinson’s disease through the NHS, starting in February 2024, offering an additional option for patients whose symptoms were no longer responding to oral medications. I would be grateful if the Minister would confirm the Government’s plans to continue with that momentum. What research funding will be maintained or increased? What new treatment options are being supported or explored? We also made progress in workforce planning, recruiting record numbers of doctors and nurses, and publishing the first ever NHS long-term workforce plan. That plan recognised the need for more specialist nurses and clinicians in areas such as neurology. The new Government have committed to updating that plan. Will they therefore retain that level of detail and maintain the focus on specialist roles needed for Parkinson’s care?
I want to raise constituents’ concerns regarding recent shortages of medications, such as amantadine and apomorphine. That has real, distressing consequences for people trying to manage their condition. The Government have rightly acknowledged those supply constraints, but what action is being taken to restore and secure access to those medications? We have also heard concerns about the potential impact of President Trump’s proposed pharmaceutical tariffs. What assessment has been made of the risks that could pose to access and affordability of Parkinson’s treatments?
Turning to the Labour Government’s record to date, I believe that Parkinson’s has yet to be identified as a strategic priority. Will the Minister confirm what level of funding is being allocated to Parkinson’s research this year and how that compares with recent years? There are also wider concerns about the implications of tax and benefit changes in the Budget, as the hon. Member for Strangford raised, including the national insurance rise. Many people with Parkinson’s rely on social care services, which are not exempt from the national insurance rises. Has any assessment been made of those extra costs for local authorities, charities and self-funders? Charities such as Parkinson’s UK do extraordinary work, but they too are affected by those rising costs. How are Ministers engaging with the charity sector to understand how higher taxes and squeezed funding may threaten support services or reduce research investment?
We know that neurology waiting times are already among the longest in the NHS. Will the Minister outline a targeted plan to specifically address that? Will the Government also publish a long-term strategy for neurological conditions, including Parkinson’s, with clear plans for service integration between the NHS and social care? A multidisciplinary, multi-agency approach is vital for people with Parkinson’s to live full, independent lives.
Finally, what guarantees can the Minister offer that recent restructuring in NHS England and the Department of Health and Social Care will not worsen access to Parkinson’s services, delay initiatives or harm continuity of care? With 50% cuts to integrated care boards, will the Minister reassure people with Parkinson’s and their families that they will not be disadvantaged?
The House is united in wanting to improve treatment, support and outcomes for people with Parkinson’s. We hope that the Government will listen carefully to today’s contributions and respond with clear commitments that include action on workforce, waiting times, integration, support for carers and access to research and innovation. Parkinson’s is a relentless condition that robs individuals of independence and dignity, but with research, investment, compassionate care and community support, we can fight back. The Conservative party stands ready to work constructively with the Government and with Members from all parties to ensure that progress is not only continued but accelerated. Let us match awareness with action, for only with action comes hope.
The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)
I am grateful to my hon. Friend the Member for Dunfermline and Dollar (Graeme Downie) for raising this important issue, and I congratulate him on leading the first substantive debate on Parkinson’s in the House. I also thank all Back Benchers for their insightful contributions, which raised various issues. Although the hon. Member for Meriden and Solihull East (Saqib Bhatti), my hon. Friends the Member for Glasgow West (Patricia Ferguson), for Stirling and Strathallan (Chris Kane), for Hertford and Stortford (Josh Dean), for Ilford South (Jas Athwal) and for Bathgate and Linlithgow (Kirsteen Sullivan) and the Members for Aberdeenshire North and Moray East (Seamus Logan) and for Strangford (Jim Shannon) all raised various issues, it is fair to say that everybody who has spoken today, including those who made contributions from the Opposition Front Benches, have raised the importance of the voluntary and community sector and shared some powerful and important stories from their constituents.
April was Parkinson’s Awareness Month and I pay tribute to the fantastic charities that make it a success: Parkinson’s UK, Cure Parkinson’s and The Brain Charity, to name but a few. In particular, I was moved to see how many people had contributed to the “Knit it Blue” campaign, sending in more than 500 beautiful knitted tulips. I also pay tribute to the Movers and Shakers, whose podcast is doing a fantastic job of raising awareness and advocating for better care and treatment for those living with Parkinson’s.
Awareness campaigns really deliver results. We just need to look at the “Get It On Time” campaign, which has led to more than 100 NHS organisations pledging to improve the delivery of time-critical medication—raised a number of times in this debate—and is backed by resources and training materials commissioned by NHS England. We also now have the Parky charter, which is galvanising public and professional awareness of the needs of the Parkinson’s community to ensure timely diagnosis, comprehensive care and dignity for all people with Parkinson’s.
We recognise the challenges of living with Parkinson’s and hear the calls from the Parkinson’s community for more research, shorter waiting times for neurology appointments and more Parkinson’s nurses and multi- disciplinary teams to deliver Parkinson’s care. The Parkinson’s UK website has given a voice to many patients living across the country, and I want to echo the comments made by Andrew in the west midlands that our Parkinson’s nurses are
“worth their weight in gold.”
Neurology is particularly challenging, and we need more neurologists and specialist nurses. There are initiatives nationally that support service improvement and better care for Parkinson’s patients. NHS England’s Getting it Right First Time neurology programme supports improvements to Parkinson’s care by promoting data-driven approaches, sharing best practices and fair access to services. It focuses on improving patient experiences, shining a spotlight on disparities in care and calling for well-integrated processes, such as people getting their meds on time.
The NHS constitution handbook sets out that patients should start consultant-led treatment within 18 weeks from referral. NHSE published a new elective reform plan in January, setting out the steps towards meeting this target by the end of this Parliament, and we achieved our pledge to deliver an additional 2 million elective appointments between July and November 2024, compared with the same period in 2023, seven months ahead of schedule. That is a first step to delivering our commitment that 92% of patients will wait no longer than 18 weeks from referral to consultant-led treatment by March 2029.
The Department for Work and Pensions offers personal independence payments to individuals with health conditions or disabilities. However, there is currently no automatic entitlement to PIP in relation to any specific health condition except in cases of people nearing end of life. The Government recently brought forward a Green Paper on the health and disability benefits system and the support we offer entitled “Pathways to Work”. In that, we consider how to improve the system for those with very severe health conditions and disabilities, which includes exploring ways to reduce the need for some people with severe health conditions to undergo a full PIP functional assessment. I am due to meet the DWP Minister next week. I will raise the issues that have been raised today with her, particularly by my hon. Friend the Member for Dunfermline and Dollar, the hon. Member for Strangford and others.
The primary focus of the Department for Transport’s blue badge scheme is to help those with the greatest mobility needs and it is not condition-specific. The blue badge eligibility criteria in England were extended in 2019 to include more people with non-visible disabilities, in order to ensure that people with the greatest needs, whatever their disability or condition, have access to a badge. There are several automatic qualifying criteria for a blue badge, such as being in receipt of certain benefits. People who do not automatically qualify due to receiving certain benefits may still be eligible, and local authorities will assess applications based on the information provided.
There are currently no plans to add to the list of conditions that give entitlement for free prescriptions. However, approximately 89% of prescription items are currently dispensed free of charge, and a wide range of exemptions are already in place. People with Parkinson’s who are over 60 years old are entitled to free prescriptions, and for those who do need to pay, the cost can be capped by purchasing a prepayment certificate. In addition, the NHS low-income scheme can provide help with health costs on an income-related basis.
My hon. Friend the Member for Dunfermline and Dollar asked me to meet several stakeholder organisations, and I am more than happy to meet them to discuss the Parky charter. I understand that Parkinson’s Connect is being piloted with six healthcare teams in England and Scotland, with more planned in 2025. I would be pleased to discuss how the pilots are providing comprehensive support to people with Parkinson’s on how they are progressing and on next steps.
NHS England’s neuroscience transformation programme improves Parkinson’s care by focusing on faster diagnosis, better co-ordinated care and improved access to specialist services. For example, it contributes to shifting our NHS from hospital to community and from analogue to digital through the home-based care pathway. That focuses on providing comprehensive support and care for individuals in their own homes, integrating remote monitoring through wrist-worn sensors, and providing symptom management advice and access to healthcare professionals. Empowering patients to manage their condition at home means we can improve their quality of life and, crucially, maintain their dignity and independence.
Last November, we established the Neuro Forum—a UK-wide, Government-led forum focusing on services and support for people affected by neurological conditions. It is the first of its kind and brings together the Department of Health and Social Care, NHS England, devolved Governments and health services, and neurological alliances across the UK to address gaps in treatment and care and to drive improvements in neurological health across the four nations. The forum will focus on practical things, such as a better understanding of neurological workforce challenges and help to address them; teaching other staff to provide better care for people living with one or more of over 600 neurological conditions including Parkinson’s; sharing innovative solutions, such as new therapies; and, crucially, ensuring that patients’ voices are heard.
Research has been touched on by many speakers. It advances our understanding of Parkinson’s as we develop new treatments, technologies and management strategies. Today these things help people to live well with Parkinson’s; tomorrow they could deliver a cure. The Government are strongly committed to supporting research into Parkinson’s disease. We continue to encourage research through targeted funding, infrastructure support, policy initiatives, and collaboration and partnerships. For example, the UK Dementia Research Institute, which is primarily funded by Government, is partnering with Parkinson’s UK to establish a new £10 million research centre dedicated to better understanding the causes of Parkinson’s and finding new treatments. The centre, supported by five of the National Institute for Health and Care Research’s biomedical research centres, has discovered that eye scans can detect Parkinson’s disease up to seven years before symptoms appear, enabling people to receive treatment and make any appropriate lifestyle changes earlier. I reassure the House that changes to the structure of NHS England and the Department will seek to eliminate duplication and improve efficiencies to ensure that work on Parkinson’s continues to develop.
Research is, of course, crucial for discovering new drugs and underpins the entire drug discovery and development process. Produodopa is a groundbreaking new treatment for Parkinson’s disease, particularly for patients with advanced disease and severe motor fluctuations. It is revolutionary because it provides a continuous 24-hour infusion of medication via a small pump, providing more consistent symptom control. The NHS rolled it out in February last year. It has been shown to improve motor function and has proved its worth by significantly improving the quality of life of those with advanced Parkinson’s. I briefly remind colleagues that the NHS in England is legally required to make funding available for treatments recommended by technology appraisal guidance published by the National Institute for Health and Care Excellence.
We all want to see people with Parkinson’s live as well as possible for as long as possible. That is why it is not good enough that we still see inequalities in access to Parkinson’s services. Neurology services have been facing real challenges, including in the workforce, delays to treatment and care, and a lack of information and support for patients. Through the forthcoming NHS 10-year health plan, we will improve care for people with long-term conditions like Parkinson’s. In response to the hon. Member for Meriden and Solihull East, I can confirm that the plan will drive our ambition towards greater use of technology and data in the NHS.
A core part of the 10-year health plan will be our workforce and how we ensure that we train and provide the staff the NHS needs to make it more accessible, proactive and tailored for patients. The refreshed NHS workforce plan will set out the numbers of doctors, nurses and other professionals that will be needed in five, 10 and 15 years’ time. It will reflect the fact that our NHS is caring for patients with increasingly complex needs.
However, we are already making progress on the workforce to support those with Parkinson’s, including by having over 900 full-time equivalent consultants—over 30 more than in 2023. There are 27 specialised neurology centres across England. As of January, over 7,700 full-time equivalent speech and language therapists are employed in NHS trusts—an increase of over 300 compared to last year. There are over 17,900 full-time equivalent occupational therapists—an increase of over 600. As of January, there are almost 25,300 full-time equivalent physiotherapists—over 900 more than last year.
We have also had a record increase in the carer’s allowance. I do not have an update on the social care talks, but I will ensure that the Minister for Care hears that the matter has been raised in the debate.
I once again extend my thanks to my hon. Friend the Member for Dunfermline and Dollar for securing the debate and to all Members who have spoken. I look forward to working with them all to ensure that people living with Parkinson’s have the dignity they deserve. I began by talking about Parkinson’s Awareness Month. One thing that struck me from hearing so many people share their stories, and from the stories shared in the debate, was the number who felt uncomfortable sharing their status, sometimes even with their close friends and family. This past month has been about smashing the stigma, and I know that this debate will play its part in that too.
Graeme Downie
I once again thank the Backbench Business Committee for allowing the debate and hon. Members from all parts of the House for their contributions, which were often emotional—I thank them for sharing those stories.
A few themes came through, largely around the value of local volunteers and groups, beginning with the first intervention from the Father of the House, the right hon. Member for Gainsborough (Sir Edward Leigh). We then heard from the hon. Member for Meriden and Solihull East (Saqib Bhatti) about Jane, from my hon. Friend the Member for Stirling and Strathallan (Chris Kane) about John and Anne, and from my hon. Friend the Member for Hertford and Stortford (Josh Dean) about Angie. We also heard the especially emotional story of Jagdeep from my hon. Friend the Member for Ilford South (Jas Athwal). Volunteer groups are vital to ensure that those with Parkinson’s can live with their condition, and they provide incredible value. We should always be grateful for the volunteers who give up their time. We also heard about the value of and impact on families, which I mentioned in my speech and which came through again in a range of hon. Members’ speeches.
I thank the Minister for her response. I look forward to continuing to work with her and Members across the House, looking at the next steps for better diagnosis and better care, so that we can better support those with Parkinson’s and their families, and towards one day having a cure for Parkinson’s.
Question put and agreed to.
Resolved,
That this House has considered Parkinson’s Awareness Month.