CompletedInterventional

Live well with Parkinson's

Parkinson’s disease affects around 127,000 people across the UK. It causes tremors and stiffness, but can also lead to fatigue, low mood, and sleep issues. Managing these diverse symptoms day to day can be challenging, and specialist NHS appointments are often limited. The 'Live Well with Parkinson’s' trial investigates whether a practical self-management toolkit can make life easier. The toolkit is available in paper format or online. Participants also receive up to six one-to-one support sessions to discuss personal goals, find local resources, and manage troubling symptoms. Researchers from the Royal Free London NHS Foundation Trust and University College London want to see if this extra support improves daily wellbeing, helps people stay independent, and lowers unplanned hospital visits compared to standard care. The study is open to adults diagnosed with Parkinson’s who live at home.

At a glance

Status

Completed

Sponsor

Royal Free London NHS Foundation Trust

Enrolment target

338

Start

01 Nov 2021

Estimated completion

06 Jun 2023

Parkinson's Disease

What is this study about?

Parkinson’s disease is a condition that gradually affects how the brain controls the body. While movement problems like shaking and stiffness are well known, many people also face fatigue, sleep disruption, bowel or bladder troubles, and feelings of anxiety. Navigating these varied symptoms can feel overwhelming, especially when specialised clinics are busy and appointments are spaced far apart.

Learning to manage health on your own terms—known as self-management—has proven helpful for many long-term health conditions. However, there has not been a dedicated, widely available self-management toolkit designed specifically for people living with Parkinson’s in the UK. This trial hopes to change that by testing a programme called 'Live Well with Parkinson's'.

The programme combines a practical toolkit with personal guidance. A trained supporter works with participants across up to six one-to-one sessions. Together, they explore what matters most to the individual, whether that is staying active, improving sleep, or knowing where to find help. By comparing this programme to usual NHS care, the research team aims to see if it improves day-to-day life and offers good value for the NHS.

Key takeaways

Tests a new self-management toolkit designed to help people live well with Parkinson’s.
Includes up to six one-to-one sessions with a dedicated, trained supporter.
Available in both paper and online versions to suit your preference.
Open to adults with Parkinson’s who live at home in the community.
Does not alter your existing NHS treatments or prescribed medications.

Who may be eligible?

This trial is open to adults of any age who have a confirmed diagnosis of Parkinson’s disease and currently live at home in their community. People who have developed memory problems or dementia at least one year after their Parkinson’s diagnosis are also welcome to join.

The study is not suitable for individuals who live in a care home or are staying in a hospital ward. It is also not open to people diagnosed with 'atypical parkinsonism' (rarer conditions that mimic Parkinson’s) or those with severe illness whose life expectancy is under six months.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

I have a confirmed medical diagnosis of Parkinson’s disease.
I live at home in the community (not in a care home or hospital).
I do not have an atypical parkinsonian disorder (such as PSP or MSA).
If I have memory problems or dementia, this started at least one year after my Parkinson’s diagnosis.

Answer every question to see your result.

What does participation involve?

Taking part involves using the 'Live Well with Parkinson's' toolkit, which you can choose to receive as a printed workbook or access on a computer or tablet. You will be paired with a trained supporter who provides up to six private, one-to-one sessions. These meetings give you space to talk about the symptoms bothering you most and set realistic goals for daily living.

Because this is a trial, some participants may receive the toolkit and supporter sessions right away, while others continue with their usual NHS care so researchers can compare results. You will be asked to complete questionnaires about your health, wellbeing, and daily activities. Your regular Parkinson's medications will not be stopped or changed because of the study.

Potential risks and benefits

Participants may gain practical skills, learn useful ways to cope with daily symptoms, and discover helpful community resources. The findings could also improve future care for thousands of other people across the UK. There are no known physical risks or medical side effects involved in using the toolkit. Joining is entirely voluntary, and you are free to stop participating at any time without your regular NHS medical care being affected.

Locations (8)

Royal Free Hospital
Approximate
London, England
Luton & Dunstable University Hospital
Approximate
Luton, England
University Hospital Lewisham
Approximate
London, England
Lister Hospital
Approximate
Stevenage, England
King’s College Hospital
Approximate
London, England
Southend University Hospital
Unverified
Westcliff-on-sea, England
Homerton University Hospital
Unverified
London, England
University College London Hospital
Unverified
London, England

Common questions

Will taking part alter my current medication?

No. The study looks at self-management tools and lifestyle support. It does not replace or change any prescriptions from your regular doctor.

Do I need internet access or a computer to join?

No. The toolkit is available in both printed paper format and online, so you can choose whichever option works best for you.

Can my partner or family carer take part with me?

Yes. Family members or carers can support you during the study and help you make the most of the toolkit.

Does it cost anything to take part?

No. The study materials and supporter sessions are funded by the National Institute for Health and Care Research (NIHR) and are completely free.

What happens if I change my mind after starting?

You can leave the trial at any point. You do not need to give a reason, and your regular medical care will stay exactly the same.

How to find out more

Kumud Kantilal

kumud.kantilal@ucl.ac.uk 442031087812 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.