Petition Increase funding for people with Parkinson’s and implement the "Parky Charter"

Timely access to comprehensive care:

We acknowledge the challenges that neurology services have been facing, particularly regarding the workforce, delays to treatment and care, and lack of information and support that some patients have experienced. Nationally, there are a number of initiatives supporting service improvement and better care for patients with Parkinson’s disease, including the RightCare Progressive Neurological Conditions Toolkit and the Getting It Right First Time Programme for Neurology. NHS England (NHSE) also has a Neurology Transformation Programme, a multi-year, clinically led programme to develop a new model of integrated care for neurology services.

We have set up a UK-wide Neuro Forum, facilitating formal, biannual meetings across the Department, NHSE, devolved governments and health services, and Neurological Alliances of all four nations. The new forum brings key stakeholders together to share learnings across the system and discuss challenges, best practice examples and potential solutions.

NHSE commissions the specialised elements of Parkinson’s care that patients may receive from 27 specialised neurology centres across England. Within specialised centres, neurological multidisciplinary teams ensure patients can access a range of health professionals and specialised treatment and support, according to their needs.

A central part of the 10-Year Health Plan will be our workforce and how we ensure we train and provide the staff, technology and infrastructure the NHS needs to care for patients across our communities. This summer, we will publish a refreshed Long Term Workforce Plan to deliver the transformed health service we will build over the next decade and treat patients on time again. We will ensure the NHS has the right people, in the right places, with the right skills to deliver the care patients need when they need it, including in neurology.

On 6 January 2025, NHSE published the new Elective Reform Plan, which sets out a whole system approach to hitting the 18-week referral to treatment target by the end of this Parliament. We have delivered an additional 2 million appointments between July and November 2024 compared to the same period in 2023, seven months ahead of schedule, as a first step in our commitment to ensuring patients can expect to be treated within 18 weeks. These additional appointments have taken place across a number of specialities, including neurology.

Parkinson’s passport - Benefits, free prescriptions and Blue Badge entitlement:

There are currently no plans to add to the list of conditions that give entitlement to free prescriptions. Approximately 89% of prescription items are currently dispensed free of charge and there is a wide range of exemptions from prescription charges already in place. People with Parkinson’s who are 60 years old or over are entitled to free prescriptions. For those that have to pay for prescriptions, the cost can be capped by purchasing a pre-payment certificate. Additionally, the NHS Low Income Scheme can provide help with health costs on an income-related basis.

The Government recently brought forward a Green Paper on the health and disability benefits system and the support we offer, entitled Pathways to Work: Reforming Benefits and Support to Get Britain Working - https://www.gov.uk/government/consultations/pathways-to-work-reforming-benefits-and-support-to-get-britain-working-green-paper. Within the paper, we consider how to improve the system for those with very severe health conditions and disabilities. This includes exploring ways to reduce the need for some people with very severe health conditions to undergo a full Personal Independence Payment functional assessment.

Eligibility for a Blue Badge is not based on the type of disability, and people with physical, mental and cognitive conditions, including those with Parkinson’s, can receive a badge if their disability or condition means that they need to park closer to their destination. Blue Badge eligibility criteria in England were extended in 2019 to include more people with non-visible disabilities to ensure that people with the greatest needs, whatever their disability or condition, all have the same access to a badge.

Research/treatments:

The Government spent £79.06 million on research into Parkinson’s between 2019-20 and 2023-24, with research delivered via UK Research and Innovation and the National Institute for Health and Care Research (NIHR). We are continuing to invest in Parkinson’s research. For example, the UK Dementia Research Institute, primarily funded by Government, is partnering with Parkinson’s UK to establish a new £10 million research centre dedicated to better understanding the causes of Parkinson’s and finding new treatments. The NIHR welcomes high-quality funding applications for research into any aspect of human health and care, including Parkinson's disease. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.

Department of Health and Social Care