From exciting research breakthroughs, to running marathons. We’re celebrating all of our community's fantastic achievements this year.
2022 has been a difficult year. Especially for people with Parkinson's. Living with the condition was made even harder due to the cost of living crisis.
Despite this, our community has been a force to be reckoned with, making a real difference for people with Parkinson's and the people who love and care for them.
We drove forward research breakthroughs
We’ve been there for the Parkinson’s community
Working with health and social care professionals
It’s been a difficult year for the NHS. It’s been more important than ever to team up with health and care services to fight for people with Parkinson’s to have the right care.
In 2022 the Parkinson’s Excellence Network:
- launched a project grants scheme which awarded 2 large project grants and 3 small project grants to improve services for people with Parkinson’s living in the UK
- funded specialist allied health professionals in multidisciplinary teams for the first time
- received data from over 500 Parkinson’s services for the UK Parkinson's Audit to address where services are working well, how they can be improved and where there are gaps that we can prioritise.
We launched our Parkinson’s Connect pilot, so that people with Parkinson’s can receive tailored information and support when they need it. The pilot referred over 500 people at diagnosis with Parkinson’s, and their loved ones, from their healthcare team to our support.
And a review of Parkinson’s Connect this year has helped us to reassess delivery and technical plans so that we can commit to continue delivering and rolling out Parkinson’s Connect referrals in the next few years.
Receiving funding for vital services
In Wales, we were awarded £350,000 in National Lottery funding to strengthen relationships between Parkinson’s communities across Wales, such as local groups and the Wales Research Interest Group, and local health boards. This will give people with Parkinson’s in Wales a voice to influence health and social care services.
And in Northern Ireland, Minds Matter, funded by the Department of Health and administered by The Community Foundation, started in mid 2022. The programme will support 250 people with Parkinson’s and carers of people with the condition in Northern Ireland with their mental health.
Reaching the whole community
If we’re not reaching our whole community, it’s not good enough. So in 2021, we set up our Race Equality in Research project. And this year, we had our first ever event organised by volunteer Kuhan Pushparatnam and the Race Equality in Research steering group. The sell-out event was for everyone, but particularly welcomed members of the community from Asian, Black and minority ethnic backgrounds who are often underrepresented in research.
We’ve also partnered with charity, AbilityNet, which is offering people with Parkinson’s support on all things digital. From setting up and using a new device such as a tablet to fixing technical issues. Find out more about the partnership and how to sign up for support.
This year, our online magazine was viewed over 338,500 times (up from 174,711 views the year before). And the ‘tips’ section of the website, which offers everyday living advice, was viewed over 103,000 times.
Helping the community get active
We know that the more physically active you are, the easier it will be to manage your Parkinson's symptoms. That's why we want everyone living with the condition to have access to what they need to be active:
We shouted louder than ever before
Thanks to our Get It On Time campaign, over 100 NHS Trusts and Health Boards across the UK have signed a pledge to work with us to make sure people with Parkinson’s in hospitals or care homes receive their medication on time.
And earlier in the year, our community sent emails to the health secretary to push for an NHS workforce plan in England. We were delighted when the chancellor announced a workforce plan in the 2022 autumn statement.
Our Can't Wait campaign
After the NHS workforce plan was announced, we knew we needed to continue to push the involvement of people with Parkinson’s in its development, as well as a clear timescale for its publication and introduction.
So, we launched our Can’t Wait campaign. Our community emailed the secretary of state and local integrated care boards (ICBs) calling for them to plan their workforce to meet the needs of people with Parkinson's and ensure their staff understand the condition, so they provide better care.
Our campaigning community handed 1,200 postcards to the care minister calling for increased funding for education about Parkinson’s-related dementia for the social care workforce in England, to improve the care they provide.
And October was political party conference season. We attended to make sure our community’s voice was heard. Volunteers and staff went to the Conservative and Labour party conferences to raise awareness of Parkinson’s and get support for our work.
We were united as a community
We can't do what we do without you, our community. From running marathons to writing poems, you've powered so much this year:
Simon was delighted to feature in both the TV advert and animation
Being part of the campaign gave him a real lift after a difficult time:
"I was overjoyed that my experiences with the disease and then subsequent support from Parkinson’s UK could contribute towards both raising awareness of the broad breadth of the disease in terms of age and symptoms, but also raise awareness in such a high profile location of Parkinson’s UK."
Roll on 2023...
2022 was a busy year. Whether you've shared with us, shopped with us, given your time or your money. Thank you for driving change for our community in 2022.