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Take part in research about future planning - online or by post
Future planning is a process where individuals who are at risk of being affected by memory or communication problems in the future, discuss future priorities with their loved ones and health professionals.
A PhD researcher at Oxford Brookes University aims to explore how people with Parkinson’s and their health care professionals think about future planning. Taking part involves completing a short survey online or by post.
To take part, please contact Rachel Lee the researcher:
· By email: 17028653@brookes.ac.uk or
· By phone: 07891 655 100.
The deadline for taking part in this research is 1 August
First Steps: new courses open for bookings
If you have been newly diagnosed with Parkinson’s, you, along with your friends, family and carers, can find out more and book a place on one of our online courses.
If you have any questions, please contact firststeps@parkinsons.org.uk.
Opportunity to review grants to improve Parkinson’s health services
Are you a person with Parkinson’s who would like to lend your unique voice and lived experience to making a difference to health services for Parkinson’s? If you would like to get involved in the rewarding process of reviewing grant applications (or know someone who would), please email excellencenetworkgrants@parkinsons.org.uk by Monday 6 May to register your interest and be considered as a reviewer in 2024.
Please note that you would not be committing to any reviews - we will always arrange this on a project-by-project basis. Find out about the Excellence Network grants reviewing process, or email us to find out about the key review dates, and the role of the reviewer.
New Grants Available for health service
Funding opportunities for Parkinson’s health service.
In 2023, the Parkinson’s Excellence Network funded over £194,000 in 9 incredible service improvement projects to enhance the lives of people with Parkinson’s and their family, loved ones and carers. These projects will enhance statutory health services at a local and a national level across the UK. Read more about the projects funded under the scheme to learn about the impact this funding will have on health services for the Parkinson’s community across the UK.
The scheme is now back for 2024, with small grants open up to £12,000, and large grants up to £60,000. If you are aware of a service gap that needs addressing within your geography, or a service improvement project that you would like to help shape through co-production with your local clinicians, now is your chance to get involved and be a part of the change for your community.
Signpost your health services to the Excellence Network funding opportunities web page to let them know about this fantastic funding opportunity to improve statutory health or care services. The deadline for health organisations to submit expressions of interest for the Small project grants is Monday 9 September 2024 (please note: the deadline for EOI for the Large project grants expired on Friday 19 April).
Get help from your Energy and Water supplier –
Each of them operates a Priority Services Register
The Priority Services Register is a free support service that makes sure extra help is available to people in vulnerable situations.
We qualify through having a long-term condition. Make sure you are registered with your energy companies and water supplier and if the worst happens and we have breaks in supply you will get interim support during the emergency and priority for reconnection.
MOVERS AND SHAKERS PODCASTS
Rory Cellan-Jones, Gillian Lacey-Solymar, Mark Mardell, Paul Mayhew-Archer, Sir Nicholas Mostyn, and Jeremy Paxman discuss the realities of life with Parkinson's at this link.
Or go to your usual podcast platform or your computer search function and look for Movers and Shakers or follwo the links below
Here is a link to where you can reach the podcasts
Movers and Shakers | A podcast about life with Parkinson's (moversandshakerspodcast.com)
And here s the link to the Parky charter and place to electronically sign up to the petition
https://cureparkinsons.org.uk/2024/03/the-movers-shakers-parky-charter-petition
The Call Companions service offers a regular chat with someone who really listens. This service is completely free, and is available not only to people with Parkinson’s but also to carers of people with Parkinson’s. Re-engage will match the person with a friendly, Parkinson’s-trained volunteer with similar interests. The calls take place every one or two weeks for a casual chat. To use the service, the person must have Parkinson’s, or be a carer of someone with the condition, aged 60 or over, and they must be able to speak on the telephone.
You can sign up yourself, or signpost people to self-refer, or you can direct them to our Helpline who will refer them. Parkinson’s nurses can also refer.
All volunteer befrienders are fully trained and will be familiar with the symptoms of Parkinson’s, but you don’t have to talk about Parkinson’s in the call.
To read more or to sign up:
Go to www.parkinsons.org.uk/call-companions, or
Call our Helpline (free phone call) on
0808 800 0303, or
Email us on hello@parkinsons.org.uk.
Get It On Time- Leicestershire
Following community feedback Katie Smith Area Development Manager and Georgina Sait (Service Improvement Advisor) met with the CEO and Chief nurse at University Hospitals Leicester to share our concerns about Parkinson's services in and out of the hospital.
This conversation led to a working group being formed, between Parkinson’s UK and the Trust, with active support from members of our local Parkinson’s community.
Several pieces of work have taken place to increase awareness of Parkinson’s at Leicester General Hospital, Royal Infirmary and Glenfield Hospital.
● In person learning sessions for ward based staff, and staff from key teams such as Pharmacy across all three sites
● All staff being asked by the Trust to undertake a mandatory e-learning session on Parkinson's and it being a time critical medication condition
● Better internal systems to track patients and follow up medications- already reducing missed doses.
● Instating of Emergency Parkinson’s medication cabinets on all sites; meaning staff can access 24/7 medication for Parkinson’s directly without having to wait for emergency doses from the Pharmacy teams
● Wards using our fabulous Blue Get It On Time medication clocks more consistently with a whole team approach.
Data being reviewed by NHS teams has shown a decrease in the number of missed doses, and an increase in staff awareness and understanding of Parkinson’s being a time critical medication condition.
People with Parkinson’s-related dementia need your support
Add your voice to our call for more training for health professionals to improve the care they provide for people with Parkinson’s-related dementia in England.
Two years ago, Stevie shared her experience of caring for her husband who had Parkinson’s-related dementia in our Nobody Really Knows Us report. This is what she said:
“It shared the glaring inadequacy of health and social care for people with Parkinson's- related dementia. Three in ten people with Parkinson's have this devastating condition at any one time, yet our health and social care system fails to meet their ongoing and complex needs. This cannot continue!”
People with Parkinson’s are 6 times more likely to develop dementia than the rest of the population. They need high-quality person centred care to meet their needs. Currently both carers and health professionals feel training is inadequate. Therefore we are asking the UK government to develop plans to educate health professionals on Parkinson’s-related dementia in England. You can read more here.
How can you help?
Sign the letter before 31 October 2023.
OCTOBER 2023
Want to help us refresh our brand?
We’re looking for people from the community to support us to refresh our brand, bringing knowledge of Parkinson’s UK and your personal connection to Parkinson’s to strengthen the project with direction from people with lived experience.
OCTOBER 2023
Upcoming Living with Parkinson's events - Alfreton and Moulton
When: Saturday 7 October 2023, 10am-4.30pm
Where: Holiday Inn South Normanton M1 (Jct 28 M1) DE55 2EH
Book your free place: Email Katie on kabsmith@parkinsons.org.uk or sign up via Eventbrite: www.eventbrite.co.uk/e/living-well-with-parkinsons-south-normanton-derbyshire-de55-2eh-tickets-479182988217
When: Monday 30th October 2023, 10am-2pm
Where: Moulton Community Centre, Sandy Hill Lane, Moulton, Northampton, NN3 7AX
Book your free place: Email Katie on kabsmith@parkinsons.org.uk
OCTOBER 2023
Do you know an unsung superhero in our amazing UK Parkinson's community?
As you know, right across our community, people are doing remarkable and positive things all the time. People with Parkinson’s, family and carers, friends, people from the medical and research communities - perhaps you have someone that jumps to mind.
They find inspiring and innovative ways to achieve great things and bring out the positives in life. Yet all too often these things go unrecognised and we want to recognise them using the Parkinson’s Community Awards.
Find out more, and submit your nomination here.
SEPTEMBER 2023
Tennis sessions for people living with Parkinson’s - Syston, Leicestershire
Working with Syston Northfields Tennis Club, we now have a trial of free tennis sessions for people affected by Parkinson's.
The team can adapt their support for people interested in developing or maintaining fitness, and can demonstrate Walking Tennis techniques, as well as standard tennis play and coaching.
Sessions start Friday 15th September and will run weekly on a Friday, 10-11am, at Syston Northfields Tennis Club, Northfields, Syston LE7 1HW. Parking is available on site.
To book or for more information about sessions please contact Kate Stock on kate.stock@tennisleicestershire.co.uk or Ed Whetton on 07800 599057 or edd@systontennis.com.
OCTOBER 2023
Every minute counts - how to get involved in new campaign
If you live in England, we need your help. Will you help us let the government know that when it comes to medication for people with Parkinson’s in hospital, every minute counts? Write to the Minister, Maria Caulfield.
We’d also love it if you downloaded our poster and write on it your message for Maria Caulfield about why medication being given on time is important to you.
You can then share an image of yourself, or your group holding up the poster on social media or by emailing it to campaigns@parkinsons.org.uk.
OCTOBER 2023
Why not join Neuro Heroes and Loughborough Group for an introductory zoom session on 11th October 2.30pm on Zoom
Email loughboroughparkinsons@btinternet.com
Your name and address in the email and Ronald from Loughborough will send you a link to the zoom call.
Partnership with The Insurance Surgery
Finding insurance can be difficult at the best of times, but if you have a long-term condition like Parkinson’s, it can feel even more tricky to navigate. That’s why at Parkinson’s UK, we’ve partnered with some specialist insurance brokers who may be able to help. Find out more here.
SEPTEMBER 2023
Thinking and memory changes information
We’ve published brand new information on thinking and memory changes for people with Parkinson’s, created in collaboration with University College London (UCL) and the Parkinson’s community.
The information looks at what causes thinking and memory changes, what symptoms to look out for and how you can best manage them. You can order a printed copy of our thinking and memory changes booklet here.
SEPTEMBER 2023
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