What we achieved in 2022, together
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 celebrated 5 years of our drug discovery and development programme, the Parkinson’s Virtual Biotech. Founded by us in 2017, it’s now a multi-million dollar strategic partnership with the US-based charity Parkinson’s Foundation.
By collaborating with scientists, supporters, investors and innovators, we can speed up breakthroughs. Like our partnership with the US based biotech company Enterin, which is leading a study to test a potential new treatment for Parkinson’s dementia.
Projects we’ve invested in are getting to a stage where they become attractive to other investors. A project the Virtual Biotech has been investing in since 2019 attracted a large investment of £16m to get a drug, which has the potential to slow the progression of Parkinson’s, to clinical trials.
We called upon the Parkinson’s community to take part in 5 clinical studies that were at risk of closure. All featured trials have seen more people registering interest and getting involved. We hope people will continue getting involved in research into 2023.
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:
Thanks to a groundbreaking new partnership with Everyone Active, a leisure provider with 200 centres across England, anyone with Parkinson’s or their carer can get a free Everyone Active gym membership for use at their centres. Over 1,200 people have signed up so far.
In Scotland, our new Glasgow Life Parkinson’s Walking Football team took part in the Scottish Walking Football Festival with 600 other players. They were awarded the Peter Collins Fair Play award!
Our physical activity grants supported 90 projects to deliver new, innovative or expanded activities across the UK. These included projects that help people become and stay active by taking part in walking football, tennis, non-contact boxing, swimming, nordic walking and golf.
Over 1,000 people joined our Edinburgh Branch online and in person to hear from expert physiotherapist and researcher Julie Jones about the growing evidence on exercise and Parkinson’s.
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:
Our 2022 Volunteer Awards celebrated the achievements of some of our stand-out volunteers. From John, who has championed inclusivity at Parkinson’s UK for LGBTQ+ people and people from rural communities. To our Newport Branch, who have made a huge difference to their local Parkinson’s community.
Jo Yaldren took us all on her DBS journey in our YouTube series DBS and Me. And through a series of intimate and very personal short documentaries, we see Jo navigate appointments with consultants, NHS waiting times and the surgery itself.
World Parkinson’s Day
On World Parkinson’s Day, over 300 of you shared your story of Parkinson’s through hundreds of poems. Some were heartwarming. Some were funny. They all told your story. And Light Up Blue saw our community ask landmarks around them to be illuminated in blue on World Parkinson’s Day. Over 190 buildings took part across the UK, from Shetland to our London office, lighthouses to bandstands.
Thanks to the generosity of Smart Outdoor CEO Mark Catterall, and other companies, as well as the Parkinson’s community, we secured over 1,000 billboards and digital screens across the UK between 1 and 11 April. Poems for Parkinson’s were on display in major cities and towns in all 4 nations. You can look back on our World Parkinson’s Day celebrations here.
A community that's there for one another
We held our first in-person community events in Scotland, Northern Ireland and Wales since coronavirus. The events were for members of the Parkinson’s community to come together to explore and discuss the issues we’re facing.
And our Cardiff Branch celebrated 50 years of being there for people with Parkinson’s, and the people who love and care for them.
Ken Howard, Parkinson's UK volunteer and Cardiff Branch member, said:
"We are so proud that Cardiff Branch was one of the first local groups to be set up and has continued to be of service to our community through both good and difficult times. We are overwhelmed with a sense of awe at all the hard work put in by the local volunteers and are determined to do all that we can to set the branch on its way for continued success over the next 50 years."
Raising vital funds
In October, 200 runners (including our CEO, Caroline!) took on the London Marathon for Parkinson’s UK. Runners raised £408,000 in total and really did us proud.
In Northern Ireland, our community took strides to a cure in Walk for Parkinson’s Belfast, where 130 walkers raised over £10,000. In total, over 2,600 of you took part in Walk for Parkinson’s across the UK raising an amazing £329,000!
Parkinson's UK on the big and small screen
In September Parkinson's UK was on the small screen once again. A TV advert, which an estimated 3m people saw, used real-life stories to show that Parkinson's can affect anyone, of any age, but that it doesn't have to define you.
And then in November, we took over the big screens at Piccadilly Circus, London thanks to the generous support of Landsec. The screen played a 10 minute animation which aimed to improve public understanding of the condition, the fight for a cure and to promote the Me, My Brain and I exhibition which was also in Piccadilly Circus.
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.