Action Plan

We're the Parkinson's charity that drives better care, treatments and quality of life. Because we're here, no one has to face Parkinson's alone.

Commitment 1 - Relating to:

Parkinson’s UK supports people with Parkinson’s to take part in research both in clinical trials and helping to shape research design. We commit to continuing to support people with Parkinson’s related dementias to take part in research in the year ahead.

 

How will your organisation achieve Commitment 1?

 

Parkinson’s UK has a Research Support Network that people with Parkinson’s can join where they will hear of opportunities to take part in research. We will then support those who show an interest in research to get involved with research design, attend research events and take part in research trials. For example, this year we have supported people with Parkinson’s related dementias to help shape the research of researcher Dan Blackburn (University of Sheffield) in his research developing a Quantitative EEG test to diagnose cognitive impairment and dementia in patients with Parkinson’s disease. As well as in research trials such as researcher Mithila Mahesh at Newcastle University’s ‘Phenomenology of Visual Hallucinations in Lewy Body Disease’

  • We have the right to know about and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part.

Commitment 2 - Relating to:

Parkinson’s UK provides information and support to people living with Parkinson’s related dementias, our commitment is to continue providing this information and advice and to improve this support as we learn more about the challenges and difficulties people with Parkinson’s related dementias experience. 

 

How will your organisation achieve Commitment 2?

 

Parkinson’s UK produces factsheets and information booklets to support people living with Parkinson’s related dementias, as well as online information. Our Helpline can provide information and advice to people living with Parkinson’s related dementias and our Parkinson’s Local Advisers can provide advice and support face to face. This information and advice helps people with Parkinson’s related dementia plan and make decisions about their care. We consult with people with Parkinson’s to identify their information and support needs, and their involvement continues throughout the process of producing information to support people by reviewing content and feeding back their thoughts. This is a rigorous process and all our information meets the Information Standard.

  • We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future.

Commitment 3 - Relating to:

Parkinson’s UK recognises the importance of social care for people living with dementia, and that too often this care is not provided by professionals who understand dementia and can be extremely costly to the individual. We will be seeking improvements the social care system in our response to the forthcoming government green paper on social care to improve care for people with Parkinson’s related dementias and their families.

 

How will your organisation achieve Commitment 3?

 

Parkinson’s UK will consult with people with Parkinson’s and their carers including carers of people with Parkinson’s related dementias to shape our response to the government’s consultation on social care to ensure it reflects that challenges people with Parkinson’s related dementias face. We will also be evaluating our work on social care as an organisation going forward to determine what is needed to best support people with Parkinson’s and Parkinson’s related dementias. We are also planning focus groups and in-depth interviews with people with Parkinson’s related dementias to inform our policy and campaigns work in this area going forward. Through achieving change by campaigning on these issues we hope to enable people with Parkinson’s related dementias to make the rights outlined in the Dementia Statement on carers a reality for people with Parkinson’s related dementias.

  • We have the right to an early and accurate diagnosis, and to receive evidence based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.

Commitment 4 - Relating to:

Parkinson’s UK is committed to campaign with people with Parkinson’s related dementias to improve the health and social care services they need to enable people to live more independently and maintain independence for longer. We will consult with people with Parkinson’s related dementias on what are the challenges they face and to prioritise what issues to campaign on.

 

How will your organisation achieve Commitment 4?

 

We will be gathering evidence on the issues people with Parkinson’s related dementias face with the health and social care system. Parkinson’s UK has included questions on dementia in our survey of people with Parkinson’s called Your Life Your Services. We will be holding focus groups and conducting in-depth interviews with people with Parkinson’s related dementia’s next year which will provide us with a rich and detailed picture of people’ experience of the health and social care system. From this work we will identify where people with Parkinson’s related dementias are not getting the care they need to live well with dementia. Parkinson’s UK will then campaign to make changes to the health and social care system to ensure they do receive the high-quality care they deserve enabling people with Parkinson’s dementia to maintain and deepen their independence.

  • We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society. Our diagnosis should not define us, nor should we be ashamed of it.