For our first Get-Together of 2024, we had Tanith Muller, the Parliamentary and Campaigns Manager at Parkinson’s UK in Scotland.
To start with, Tanith confirmed the launch of a new report, which is due to be launched very soon (Scotland Can’t Wait). As the image below confirms there are three key themes: Workforce, Get it on Time and Mental Health and Dementia.
1. Workforce
Tanith outlined that the recommendation is 300 People with Parkinson’s (PwPs) per Nurse Specialist. The average in Scotland is 470 PwPs per Nurse!
The map on the picture above which was taken of her slide, does not show too clearly what the colours depict. Typically, green is good, red is not good and black is really bad. And in that colour bracket is Lanarkshire, which has over 700 PwPs per nurse!
Shetland is the worst affected. There are 60 PwPs in Shetland, but the Parkinson’s Nurse there covers other neurological conditions (e.g. MND, MS), as well as stroke patients. So, it is a really dire situation for people in Shetland. This led on to Tanith outlining that there is a rural health care crisis, which had been in news in the last couple of days. A source in relation to this can be found at STV News.
Note: The numbers of PwPs is worked out by Parkinson’s UK, based on GP records and projections, based on age/gender. But Parkinsonism like symptoms are common in other conditions, but these people are not counted in the figures.
2. Get it on Time
There are around 12,000 PwPs in Scotland. Many nurses still not aware of the time critical perspective of Parkinson’s meds. Parkinson’s UK have an ongoing campaign to look at ways to improve this. There is potential to use technology to help, perhaps some kind of alarm system in hospitals that can alert the person who dispenses medication in a ward. (Many of us rely on timers or apps on our phones to remind us to take our medications, so this seems a feasible option to explore 🤞).
3. Mental Health
Tanith outlined that around half of PwPs have anxiety and 50% suffer from depression. But this is not talked about, and that is something that needs to change.
The time to wait for diagnosis can be long, and Tanith believes even if not diagnosed yet, people should be directed to local support networks. This includes carers
Parkinson’s medications sometimes cause psychosis, and there needs to be more research done. The more stressed a person is, often the worse the hallucinations are.
Often stress manifests in escalated, or new symptoms. Hence activities and support groups are key. Fortunately for those in Edinburgh, the Branch has many of these available. If you haven’t already looked at what is available please to see the Activities and Events pages, and also the Local Support pages.
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Cost of Living
There was a questionnaire was sent out last year (2023). Results show that about 20% of PwPs live in most deprived areas, with 21% in the least deprived.
(As a Branch we are committed to trying to reach PwPs in the more deprived areas of Edinburgh. One of our actions is re-establishing links with the Thistle Foundation).
Blue Badge
Tanith expressed the gratitude of Parkinson’s UK in Scotland to Branch volunteer Stuart Smith and Branch Members Lesley and Mike Grieve for going to a Transport for Scotland meeting. Blue Badges are so important. At a National level, MND nurses are fast-tracking blue badges. Parkinson’s has a slower progression, so while we perhaps cannot hope for this just yet, it is hoped that PwPs will not have to fully reapply for renewal in future, and it will be automatic.