Parkinson’s Awareness Month

Katrina Murray Excerpts

Thursday 1st May 2025 Commons Chamber

[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.