Parkinson’s Disease

Graeme Downie Excerpts

Monday 17th November 2025 Westminster Hall

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

It is a pleasure to serve under your chairship, Ms Lewell. As chair of the all-party parliamentary group on Parkinson’s, it is my privilege to take part in this debate. In May this year I was delighted to secure the first substantive debate on Parkinson’s held in the Chamber. It is fantastic to see that as a result of that tenacious campaign we have not had to wait long for this next opportunity. I want to start by noting the incredible feat of securing over 100,000 signatures on the petition raised by Mark Mardell on behalf of the Movers and Shakers.

In Scotland there are around 14,000 people diagnosed with Parkinson’s, and every single day another seven people are told they have this disease—one of the fastest-growing neurological conditions in the world. In my constituency there are 235 people living with Parkinson’s, each of whom are supported by carers, both paid and unpaid, family members and clinicians who work tirelessly to ensure they can live their very best quality life. But when we look at the health economics of Parkinson’s, people living with the condition are seven times more likely to be among the very highest users of health services, falling into a category defined as high-cost, high-need patients, along with approximately 5% of the general population. Meeting the needs of that accounts for more health spending than the remaining population put together.

We would expect that this group of people are able to access consistent gold standard care and support, yet they face some of the starkest postcode lotteries anywhere in the UK. In the NHS Forth Valley local authority in my constituency, people referred for neurological support are typically seen quickly, but in NHS Fife the median wait for the first neurology appointment is 31 weeks, stretching to 87 weeks for some. You can imagine not knowing that something is wrong and having to wait for almost two years before a specialist can help you to understand what is happening to you. Can you imagine the impact on your loved ones? We must always remember the emotional and social cost to people.

[Jenny Riddell-Carpenter (Suffolk Coastal) (Lab)]

Does my hon. Friend agree that, while tackling Parkinson’s and highlighting the issue today is critical, we also have to make sure that we look at Parkinson’s with dementia and all the other challenges that come with such a complex set of health issues.

[Graeme Downie]

My hon. Friend is absolutely right: the complexity of Parkinson’s itself and the other conditions it presents with is another reason why this is something we must tackle immediately. I want to make sure I am not using up other people’s time by repeating some of the information in the Parky charter. However, I think there is a need for speedy care and instant information, and I echo the point raised earlier about the Parkinson’s passport and making sure that that involves the devolved Administrations, so that touchpoints are truly connected and best practice is delivered wherever possible.

The financial cost of living with Parkinson’s is immense. On average it costs a household £21,986 per year, and people with Parkinson’s are 9% more likely to be incorrectly assessed for PIP or adult disability payment in Scotland, something I hope that the Minister will address in her closing remarks as well.

--- Later in debate ---

[Graeme Downie]

I thank my hon. Friend for the moving way he has talked about his father-in-law. Does he agree that what he has said emphasises the need to make sure that families are also supported during Parkinson’s care?

[Adam Jogee]

I could not have put that better myself.

In Newcastle-under-Lyme, hundreds of local people live with Parkinson’s, and that number is rising. It is a life-altering disease that destroys personal autonomy; it affects someone’s ability to talk, swallow, move and write. Cruel is not the word. For those who are suffering and need treatment now, the lack of care provision and the inaccessible treatment is simply unacceptable.

I think of my friend Alderman Lizzie Shenton, a former leader of Newcastle-under-Lyme district borough council, who I saw just last week. She has been diagnosed with the early onset of Parkinson’s in her 50s. She is very healthy and still has much do to. Lizzie had to wait 10 months for a consultant appointment to make a formal diagnosis, and she has been waiting for her DaT scan for five months, without which no medication or treatment can be prescribed.

I pay tribute to the fantastic work being done by the North Staffs Parkinson’s UK branch—the chair, Lorraine, the treasurer, Councillor David Grocott and the whole committee who do wonderful things week in and week out. I thank the Dubb family from the Westlands in Newcastle-under-Lyme for their annual fundraising 5k run and a massive cookout at their home—which smelled very good—all raising money for Parkinson’s UK. My constituent Julie Hibbs has long campaigned to add Parkinson’s to the medical exemption list. The Minister knows that I support those calls—I have raised them with her and others, and I will continue to do so.

The funding and availability of care for Parkinson’s patients do not match the severity of this disease and the desperate need for proper treatment. Getting those suffering from Parkinson’s the right care at the right time is critical to ensuring that their quality of life is as high as it can be, and that the cost of providing that is used as efficiently as possible. As more and more of us get Parkinson’s, those who will suffer from it and their loved ones deserve to know that the question of getting the right treatment is not one they will ever have to worry about.