Parkinson's UK

Parkinson’s Connect is our information and support service at Parkinson’s UK.
More people are being diagnosed with Parkinson’s than ever before and at Parkinson’s UK we want to be there for even more people, from diagnosis onwards.

Parkinson’s Connect builds on the services we already offer to deliver personalised support to more people with Parkinson’s, their family and friends.

Find out more here: https://www.parkinsons.org.uk/news/parkinsons-connect-how-were-evolving-parkinsons-support

Steph McIntosh and Nicole Kirbyshire will be available on the stand from 9.30am - 11am. You can also get in touch with us at parkinsonsconnect@parkinsons.org.uk.

The Research team: keeping you up to date and supporting Parkinson's research

The Research Team at Parkinson's UK are dedicated to funding research, keeping the community up to date and supporting researchers to engage, involve and recruit people affected by Parkinson's in their studies. Come to the booth to find useful links and tools!

Katherine Fletcher, Research Communications Officer at Parkinson’s UK, will be available from 3-5pm to answer any questions, or contact the team at research@parkinsons.org.uk.

Useful links and tools to stay up-to-date with the latest research breakthroughs:

Search for research trials looking for participants using our Take Part Hub and share with your patients,. Just enter a postcode or town to get started.
Sign up to our Research Support Network to receive the latest research news and opportunities. It's free, and a great way to share information relevant to people affected by Parkinson's.
You can also read more on various research topics on our blog.

Are you involved in carrying out research, or know someone who is?

Request our support to help you recruit participants to your study.
We can also help you to involve people affected by Parkinson's in shaping and designing your study. Find out more here.
New! We have recently produced a toolkit to help you stay connected with your participants, after they have taken part in a study.

The Policy and Campaigns team: our work and how you can get involved

We ensure that campaigns to improve services are driven by the views and needs of people with Parkinson’s, carers, families and friends and are underpinned by robust evidence.

Our main areas of work are:

Develop our public policy positions on issues that concern people living with Parkinson’s

We convene the Policy Panel that brings around 20 people affected by the condition together to discuss and debate what we think about issues such as using animals in research, support for carers, clinical trials and prescription charges. The experiences and views of people affected by Parkinson's is central to our policy work.

Run campaigns on health, social care, welfare, research and mental health and dementia

We campaign for people with Parkinson’s on issues that may affect them. We also encourage and support people affected by Parkinson’s to campaign for the health, social care and transport services they want.

Parliamentary activity

We support the All Party Parliamentary Group on Parkinson’s. We approach ministers throughout the year to meet and discuss issues that affect people with Parkinson’s and their carers and we also attend party conferences.

Get in touch with us

We’re here to provide guidance and support about policy and campaigns to area teams, members, local groups and branches. Contact us on 020 7963 9349 or email campaigns@parkinsons.org.uk

Who’ll be available on the stand on 4 November to chat via direct messaging?

Laura Cockram (11am - 12pm)
Grace Ogden (11.30am - 12.30pm)
Sam Freeman Carney (12pm - 1pm)
Georgina Sait (12.30pm - 1.30pm)

Useful links

Parkinson’s UK campaign webpages - https://www.parkinsons.org.uk/get-involved/campaigning-change
Our campaigning during COVID - https://www.parkinsons.org.uk/get-involved/campaigns-coronavirus
Becoming a campaigner - https://www.parkinsons.org.uk/get-involved/become-campaigner
Laura Cockram Twitter - @lozzaram

How you can support the work of the policy and campaigns team:

1. Encourage people affected by Parkinson’s to share their experiences of living with the condition with us by contacting campaigns@parkinsons.org.uk

2. Sign up to our Campaigns Network at parkinsons.org.uk/campaignsnetwork and take part in our e-campaigns.

The First Steps programme

The First Steps programme is part of Parkinson’s UK newly diagnosed offer for people recently diagnosed with Parkinson’s. It’s a free online programme designed to help people take the first steps in processing their diagnosis and finding out about the information and support available to help them live well with Parkinson’s. It has been developed by people living with Parkinson’s and healthcare professionals and is delivered by volunteer hosts who live with the condition.

At a time where people have lots of questions and are looking for answers, it’s important that people know about the information and support available to them. You can help by telling your newly diagnosed patients what is on offer. Please refer them to the First Steps webpage so that they can decide whether the programme is the right type of support for them.

Contact details:

firststeps@parkinsons.org.uk

020 7963 9381

Staff contacts:

Sophie Bament- First Steps coordinator will be on the stand from 1.30pm - 3pm.

Fighting Fit

Fighting Fit is a weekend residential course for active and working-age people with Parkinson’s delivered by an Activity Group which is part of Parkinson’s UK.

This programme is for people who have been diagnosed for less than 5 years, who have come to terms with their diagnosis and want to take control and improve their wellbeing and relationships.

What makes Fighting Fit different is its focus on the importance of exercise, emotional and psychological wellbeing and the sharing of information about how to live well with the condition.

Find out more about us here: https://fighting-fit.org.uk/about-us/

Aims:

To inspire healthy lifestyle choices and help maintain physical and psychological wellbeing
To build knowledge about how to take control of Parkinson’s
To share concerns and anxieties in a ‘safe’ environment
To involve partners (if desired) and develop a personal life plan.

Outcomes:

Encourage exercise and reinforce its importance as medication
Develop a positive mental attitude
Make new connections and friendships
Develop fresh approaches and new skills for life.
Get information and signposting
Develop a personal life plan.

Be inspired, motivated and empowered by experts and other people living with the condition. Try out new forms of exercise and activities. Become more informed and join in discussions about the key issues affecting working-age people.

Read more about what we do and view information about our programme: https://fighting-fit.org.uk/what-we-do/

Contact us

Visit our webiste www.fighting-fit.org.uk

Sadly we are unable to join the stand today, but to contact us please call Christine Walden on 07815 759480 or email us at hello@fighting-fit.org.uk.

Downloadable resources from Fitting Fit:

Fighting Fit update for Parkinson's UK Network

If you want to talk please call Christine Walden on 07815 759480 or email us at hello@fighting-fit.org.uk