Case Studies

Parkinson’s UK – Self Management Project

Section: Self Management and Co-Production HubType: Case Study

Parkinsons have been working to find a cure and and improve life for everyone living with, or caring for someone with Parkinsons

Parkinson’s UK are the leading support and research charity for Parkinson’s. For more than 40 years they have been working to find a cure and to improve life for everyone living with, or caring for someone with, Parkinson’s.

The Scotland team provide a range of support and information services as well as campaigning to raise the profile of Parkinson’s.  Jean Ballantyne, Carer and Steering Group Member Parkinson’s UK knew that sleep had an impact on people’s lives and that some specialist nurses felt confident to give support in sleep management – although this support often came in the form of a written information sheet. Jean Ballantyne, who cares for her husband Mel who lives with Parkinson’s, suggested to Parkinson’s UK that they apply for funding for a sleep project because of the hundreds of people they knew who are affected by little sleep.
Parkinson’s UK were successful in their bid to the Self Management Fund to focus on this important area for 40% of people living with Parkinson’s in Scotland and their families.
‘In the 25 years since Mel was diagnosed, I could count on one hand the nights I’d had a ‘good’ nights sleep’ – Jean Ballantyne
Gathering together a broad partnership of Nurse Specialists, Consultants, Sleep Counsellors, Psychologists, staff from Parkinson’s UK and people with direct experience of Parkinson’s, they set to work to find out more about the issue, and investigating the options for developing some standards for self management support in this
area.
The different perspectives enriched the experience of the group. Jean was able to bring her practical experience, and that of many other people who faced the daily battle that little or no sleep can bring, to highlight the emotional and psychological side of lack of good sleep and its impact on life with a long term condition.
‘I have learnt so much about the effects of lack of good sleep for people living with Parkinson’s and their families – it was invaluable to be there from the start’ – Consultant
The programme that the group developed was based on generic materials from the Sleep Research Centre at Loughborough University, adapting them to reflect some of the specific issues of living with Parkinson’s. The structured, step-by-step approach allows people flexibility to develop new techniques to manage their
sleep better. The ’10 Rules of Sleep Hygiene’ included in the programme support a change of attitude towards sleep, shifting to a focus on a better quality of sleep rather than the number of hours. This shift in behaviours has been found to also improve self esteem and decrease feelings of depression, allowing people to interact
more with their families.
Specialist Nurses and other professionals working to support people living with Parkinson’s have also reported that they feel more competent in their skills and ability to offer an additional service to the families they are working with. People living with Parkinson’s, and their families, have been encouraged to share their experiences to support the knowledge and qualifications that the professionals have.
‘We can all relate to the issues lack of sleep can bring, with or without a long term condition’ – Anna Lynall, Parkinson’s UK
Parkinson’s UK feel that this project is only just the start of work in this area. They hope to make the programme available to other professionals and people across the UK as well as other organisations supporting people living with different long term conditions.
‘It seemed natural to me to suggest to the Scotland team that an application for funding looking at the impact of sleep could improve the quality of life for people living with Parkinson’s’ – Jean Ballantyne
For more information please visit www.parkinsons.org.uk
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