Parkinson’s Awareness Month

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.

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.

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.

“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.

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.

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.

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.