How the Wellbeing Fund has enabled us to support complex conditions from a distance

Written by: Annie Macleod, Director, Parkinson's UK

Published: 23/09/2020

Read more about how Parkinson's UK has adapted to support people affected by Parkinson’s through COVID-19.

In June, Barry* found himself going through an extremely sad and difficult time. His Parkinson’s symptoms had deteriorated. He was shielding and feeling completely isolated. This, at a time when he needed human contact more than ever – in April, Barry’s wife of 58 years had died. Due to restrictions, he had been unable to bury her. And a few weeks after, his sister died too.

Barry was stuck, in the midst of an international pandemic, having lost his life partner and main support network. That’s when he rang Parkinson’s UK Scotland’s (this link will take you away from our website) Local Adviser Service.

Initially, Barry said he needed help with a benefits claim. After speaking for a while, however, it emerged that his claim had already been filed and all was in order. What Barry needed was someone to talk to.

Our Local Adviser said: “Because our service isn’t time-limited, I was able to have regular conversations to offer Barrry a friendly and supportive environment.

“I helped him set up support through a befriending service and local Parkinson’s UK group activities, which he has been able to join at home. He and I have continued speaking, and I’m looking forward to visiting him in person when it’s safe to do so.”

Living well with Parkinson’s is challenging under normal circumstances. There are about 12,400 people diagnosed in Scotland. Everyone is affected differently, but there are around 40 recognised Parkinson’s symptoms – which impact every aspect of daily life, including movement and speech, sleep and mental health. Parkinson’s symptoms get worse and become more complex over time, and no current treatment can slow or reverse its progression.

Over the past few months, our community has faced unprecedented pressures due to COVID-19. Parkinson’s UK support services have experienced a surge in demand. In Scotland, our local advisers have supported hundreds of people – proactively checking in with some of those who had previously accessed our service, as well as supporting people, like Barry, who were new to us.

We have worked hard to adapt our services to meet people’s needs during lockdown and have provided lots of new support online. But many people with Parkinson’s, including Barry, are not computer literate. This means that the telephone support offered by our Local Advisers has been crucial.

This service is invaluable, but impossible without sufficient funding. The Wellbeing Fund has enabled Parkinson’s UK Scotland to meet the increased need for support at this time.

At Parkinson’s UK, we want everyone affected by Parkinson’s to have personalised information and support to live well. In Scotland, we use our specialist knowledge of the complexities of Parkinson’s, our local area knowledge and connections to health and care experts to deliver this essential work. We have more than 40 local groups spread from Annan and the Borders, to Shetland and the Western Isles, and communities in between. Our active network of around 300 volunteers helps us connect with thousands of people with Parkinson’s, their partners and family members across Scotland.

Our expert Local Advisers understand the complexity of Parkinson’s and its effects on individuals and everyone around them. They’re there to help with the practical aspects – from financial benefits and equipment grants to navigating social care and other support. They link people to the information and support they need, and they can, as in Barry’s case, be there as a shoulder to cry on. Because there is no limit to the time they spend working with people, Local Advisers are also there to celebrate the triumphs, the silver linings, and relief when a problem has been ironed out.

During this crazy, mixed up time, we’ve all felt a little lost and a bit lonely. Having a condition that’s complicated and unpredictable can make it all seem too much. Parkinson’s UK Local Advisers are there to help – now, and moving forward into whatever the world will look like for people with Parkinson’s in Scotland.

*name has been changed.

Our member

Our Member

Parkinson’s UK

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