Parkinson’s Awareness Month

Graeme Downie Excerpts

Thursday 1st May 2025 Commons Chamber

[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.

--- Later in debate ---

[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.

Congenital Hyperinsulinism

Graeme Downie Excerpts

Tuesday 8th April 2025 Westminster Hall

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairship, Ms Butler. I thank my hon. Friend the Member for Warrington South (Sarah Hall) for securing this important debate, which really is a tribute to her and to her constituents, Ibbie and her family, who have clearly been through a very challenging time but have shown tremendous strength, bravery, love and compassion. I would be grateful to my hon. Friend if she could pass on our very best wishes to the family and thank them for helping us to look at this issue.

The birth of a new member of the family should be a moment of excitement, celebration and, indeed, exhaustion. Realising that their baby might have a serious illness should be the last thing on any new parent’s mind. That is why getting help quickly is so important, as is ongoing support. Around 95 children are born with congenital hyperinsulinism in the UK each year. Although that means it is a rare disease, it should not be overlooked.

The Government are committed to improving the lives of people living with rare diseases. On that point, I have carefully noted the seven asks that my hon. Friend the Member for Warrington South listed, including her request to meet the relevant Minister. I should say that the lead Minister in this area is our colleague the Minister of State for Health, who is not present today—I am standing in for her. My officials will pass on to her all my hon. Friend’s asks, including the one for a meeting. I am sure that the Minister of State for Health will be happy to follow up on those points.

Rare diseases like congenital hyperinsulinism are individually rare but collectively common. There are more than 7,000 rare conditions, meaning that one in 17 people will be affected by one over their lifetimes. Each condition will have different symptoms and experiences, and every person is unique. Despite that, across all rare diseases there are shared challenges, which have shaped the approach of the UK rare diseases framework and England’s annual action plans. The national conversation on rare diseases in 2019 identified four priorities for the framework: ensuring that patients get the right diagnosis faster; increasing awareness of rare diseases among healthcare professionals; the better co-ordination of care; and improving access to specialist care, treatment and drugs.

[Graeme Downie (Dunfermline and Dollar) (Lab)]

I congratulate my hon. Friend the Member for Warrington South (Sarah Hall) on securing this important debate. I had not intended to intervene, but my hon. Friend raised issues similar to those in my constituency in respect of young boys diagnosed with Duchenne muscular dystrophy, who are having difficulty accessing the drug Givinostat in Scotland. I am aware that the Minister might not be able to respond immediately, but will he meet me to discuss access to that drug in Scotland, and how we can help other young people affected by a rare disease?

[Stephen Kinnock]

I am happy to look into that. Healthcare in Scotland is devolved, but all the nations of the United Kingdom can learn a huge amount from each other—nobody has a monopoly on good ideas—and it would be excellent to find out a little more about the issues my hon. Friend referred to.

The four framework priorities form the “what” of what we do, and are supported by underpinning themes—the “how” of how we get there. The themes include keeping the patient voice at the heart of all we do. I pay tribute to advocacy groups such as the Children’s Hyperinsulinism Charity and Genetic Alliance UK for their excellent work supporting families and continuing to raise important issues that help to make things better for people with congenital hyperinsulinism.

In England, we published the fourth rare diseases action plan on 28 February, which is otherwise known as Rare Disease Day. The plan provides updates on the progress made since the beginning of the framework in 2021. I am pleased to say that it also includes three new actions for the future, which aim to improve the co-ordination of care, make things easier for families who need to visit multiple specialists, and improve the environment for research on rare diseases in the UK.

Receiving the right diagnosis as soon as possible is vital, particularly for conditions that present in infants and young children, such as congenital hyperinsulinism. The Exeter Genomics Laboratory is the national provider of hyperinsulinism genetic testing and the research centre of excellence. That lab, the paediatric endocrinologist community, and highly specialised service units have a close relationship, so patients can be diagnosed rapidly and managed effectively via a multidisciplinary team framework.

A diagnosis means that the right treatment can be given early, ultimately helping to improve health outcomes. Advances in genomics represent a huge opportunity to find children with rare diseases as soon as possible. The generation study, which commenced last year, is run by Genomics England and is piloting the use of whole-genome sequencing in newborns to identify more than 200 rare conditions, including congenital hyperinsulinism. The study is now under way and recruiting across 18 NHS trusts. It aims to screen 100,000 babies.

Diagnosis is only the start of managing a rare disease, and I know that there is still unmet need. Too many people continue to struggle with challenges, including lack of access to reliable information or specialist treatment. Only 5% of rare conditions have an approved and effective treatment—that is a shocking statistic. To improve the situation, we have made pioneering research another underpinning theme of the UK rare diseases framework. The highly specialised technologies programme of the National Institute for Health and Care Excellence evaluates technologies for very rare, and often very severe, diseases. We are working with the regulatory system to look at access schemes such as the early access to medicines scheme, the innovative licensing and access pathway, the innovative devices access pathway and the innovative medicines fund. Those schemes are all designed to support the earlier availability of innovative treatments to patients who need them, and they must also work for rare diseases.

Many people struggle to access reliable information on rare diseases. With over 7,000 different rare diseases, which often need highly specialised input, the NHS website is not always the best place for such information—although I note the point that my hon. Friend the Member for Warrington South made about the website, and we will look into that. Patient organisations and charities play an important role in creating high-quality information on rare conditions. Therefore, in this year’s action plan we have set out the steps we are taking to support organisations to get the information they produce accredited under the Patient Information Forum’s trusted information creator—or PIF TICK—scheme, so that families will know they can rely on trustworthy information.

Living with or caring for someone with a rare disease can be mentally tough. We know that people living with rare conditions, and their families and carers, often struggle to access mental health and psychological support. This is not right. Alongside the wider steps that we are taking to improve mental health access, the NHS genomics education programme has this year published new resources on rare diseases and mental health, aimed at healthcare professionals. It has also developed a communications tool to help healthcare professionals with sensitive conversations, to ensure that patients and families feel supported throughout the diagnosis of a rare condition.

I close by again thanking my hon. Friend the Member for Warrington South, as well as those affected by congenital hyperinsulinism and organisations that advocate on their behalf. Although the five-year UK rare diseases framework will come to a close at the start of next year, we remain committed to improving the lives of those with rare diseases. The Under-Secretary of State for Health and Social Care, my hon. Friend the Member for West Lancashire (Ashley Dalton) will work with officials and colleagues in the devolved Governments to chart a course forward and maintain the momentum we have built.

Question put and agreed to.

Oral Answers to Questions

Graeme Downie Excerpts

Tuesday 7th January 2025 Commons Chamber

The Secretary of State was asked—

[Graeme Downie (Dunfermline and Dollar) (Lab)]

1. What steps he is taking to improve mental health services for children.

[The Minister for Secondary Care (Karin Smyth)]

The delivery of mental health services for children in Scotland is the responsibility of the Scottish Government. I hope that they will make the best use of the boost from the recent Budget to invest in mental health services. In England, we will support children and young people earlier by providing access to a specialist mental health professional in every school and rolling out Young Futures hubs in every community. We will also cut waiting times by recruiting 8,500 more workers across children and adult mental health services.

[Graeme Downie]

The long-term impact of the covid-19 pandemic on young people is often forgotten, with isolation leading to missed opportunities, lost life experiences and still unknown impacts on mental health. Child and adolescent mental health services referrals in Fife and across Scotland have skyrocketed, and despite a record Budget settlement from the UK Government, the SNP Scottish Government have told NHS Fife not even to bother asking for more funding to tackle this massive problem. I and colleagues will write to the Scottish Government about that. Will the Minister join me in urging the Scottish Government to reverse course and ensure that young people have the support that they deserve and need?

[Karin Smyth]

My hon. Friend makes an excellent point on behalf of young people. It is disappointing that the Scottish Government do not seem to be allocating the funding as they could. He raises a powerful case, and I know that he will work hard with the Government in Edinburgh to make the situation better for his constituents.