Parkinson’s UK: together we can unlock a better future for people with Parkinson’s

Campaigners in Birmingham sharing that they ‘Can’t Wait’ for healthcare

Juliet Tizzard, Director of External Relations | Parkinson's UK

5 min read09 September Partner content

Every hour, two people in the UK receive a life-changing diagnosis of Parkinson’s, the fastest growing neurological condition in the world. From delays in diagnosis to fighting for essential medication and financial support, many people with Parkinson’s are left without the care and support they need. This comes at a high cost to them, their loved ones and the UK economy

Parkinson’s care accounts for £3bn per year, a figure set to grow as Parkinson’s UK estimates an increase in people living with the condition to 172,000 by 2030. This progressive and fluctuating condition affects all aspects of daily life and takes a toll on families, friends and carers.

Parkinson’s UK is working with legislators and policymakers to improve access to the vital healthcare and support needed for people to live well, along with accelerating research into treatments and a cure. Tackling these urgent priorities together will not only transform lives but also drastically reduce costs.

Improving access to high-quality healthcare and vital medication
Due to chronic shortages of specialist healthcare professionals, it can take months, if not years, to receive a Parkinson’s diagnosis. Even then, people living with the condition face long waits and many struggle to access the multi-disciplinary specialists they need.

The NHS waiting list for neurology has grown by almost 100,000 patients since the start of the pandemic.
The UK ranks 44 out of 45 European countries for the number of neurologists per population, with only Ireland having less.

Added to this, people with Parkinson’s experience difficulties accessing the essential daily medication they rely on to manage their symptoms, which can severely impact their wellbeing.

We welcome the Health Secretary's commitment to deliver 62,000 more NHS neurology appointments annually. The new government has a golden opportunity to improve care for people with Parkinson’s by bolstering the specialist clinical workforce, addressing neurology staff shortages and resolving medication supply issues. We hope the new government acts on our response to Lord Darzi's investigation of NHS performance and uses the forthcoming ten year plan for health to take concrete action.

Supporting people to afford to live well and succeed in work

People with Parkinson’s face significant financial burdens, with an additional average yearly cost of £20,062 due to expenses such as home adaptations, travel to appointments, energy bills and prescription charges.

Social security benefits, like Personal Independence Payment (PIP), are vital for people with Parkinson’s to live independently. However, inaccurate PIP decisions are, on average, 10 per cent higher for people with Parkinson’s than those with other conditions. Inadequate assessor training and criteria that fail to consider the condition’s fluctuating nature leave many without essential support.

The astronomical rise in household fuel costs has forced many in our community to cut back on heating their homes. Cold environments can exacerbate Parkinson’s symptoms, which is why we’re deeply concerned about the government’s proposal to restrict the Winter Fuel Payment to only those receiving Pension Credit, especially given its low uptake.

While most people develop symptoms after they’re 65, thousands of working-age people live with Parkinson’s. Many struggle with financial instability, unable to secure or retain employment while managing their symptoms and the extra costs of living with a disability.

People with Parkinson’s should be able to work if they can, but they need better support. Current employment rights and provision for disabled workers are inadequate, resulting in people leaving work prematurely, leading to lost talent and increased poverty. In a 2019 survey, over two thirds of people who had stopped working due to Parkinson’s said adjustments by their employers could have helped them to stay in work. The Employment Rights Bill announced in the King’s speech presents an opportunity to improve working conditions and tackle the challenges people with Parkinson’s face.

We welcome the government’s recognition of the need to reform the Department for Work and Pensions and the vital role that employers must play in enabling disabled people to gain and retain employment. We hope the new Secretary of State will commit to respecting and supporting those disabled people – including those with Parkinson’s – who can no longer work.

Prioritising Parkinson’s research and the uptake of innovations in the NHS
The UK has a vibrant Parkinson’s research community, which has made significant strides in recent years. However, much remains unknown about the causes of Parkinson’s and there’s still no treatment that can stop or slow its progression. Parkinson’s UK is supporting the development of several promising new treatments, but government support is crucial.

Delays in regulatory approvals and the slow adoption of innovative treatments and technology throughout the NHS is blocking access to transformative therapies for people with Parkinson’s. We believe that the government’s ambition to accelerate regulatory processes presents huge potential and we’d like to see a renewed focus on Parkinson’s research too in order to speed up the development of life changing new treatments.

With Parkinson’s affecting more and more people, we can no longer ignore the challenges faced by those affected nor the strain it puts on the NHS and UK economy. The time for urgent, decisive action to improve access to healthcare, financial support and research is now. Together, we can change the future of Parkinson’s.

How you can help
Join the All-Party Parliamentary Group (APPG) on Parkinson’s, which has successfully worked for 17 years to improve the lives of people affected by Parkinson’s by raising awareness among parliamentarians and influencing legislation and policy makers. For more information or to join, email campaigns@parkinsons.org.uk.

To find out more about Parkinson’s UK and the support we can provide your constituents, visit: parkinsons.org.uk.

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