We were extremely lucky to be joined by a range of key staff from P-UK Scotland:
- Alice Hall (Volunteer Co-ordinator for East and South-East Scotland)
- Tanith Muller (Parliamentary and Campaigns Manager)
- Mairi Gordon (Campaigns and Policy Officer)
- Natalie Blair (Parkinson’s Local Adviser: Edinburgh, East Lothian and the Borders)
- Mary Ellmers (Service Improvement Manager)
Alice provided a very useful organisational structure document that outlined the various key people and their roles. For those staff in the chart that weren’t at the Get-Together we got a really useful insight into their roles. Interestingly Alice outlined all the roles are Work for Home (WFH) and confirmed that there had at one point been an office in Edinburgh, though this was over several locations over the years.
Then each of the others introduced themselves and gave an outline of key information and insight into their roles and the work that is being done.
The summary below doesn’t completely reflect who discussed what, as there was a lot of content and as the information was so interesting, the note taking was very ad hoc!
Mary reminded us of the Get it On Time campaign which is an example how her role can be to sort of bridge a gap with the NHS, and when things are not going well, she is often able to intervene. While Get it On Time is a Parkinson’s UK wide campaign, Mary reminded us that the work still goes on, but there have been improvements. One of those present had a hospital admission very recently and confirmed she had been give her Parkinson’s medications on time, every time.
Mary also helped in NHS Highland to ensure that when the Parkinson’s Nurse Specialist announced her retirement that Mary pressured the NHS to get a replacement in post before the existing nurse left. (NHS are not the best at succession planning perhaps?)
Other things P-UK have worked on is Bone Health. Risks of developing osteoporosis is higher for PwPs. For more information, please do visit the webpage via the link.
P-UK have developed Resources for Health Professionals. This suite of publications and videos is a fantastic and free source of information that gives knowledge and understanding to a range of people working in the health and care sectors.
Future developments will be coming next year, and one of the interesting ones is a Hospital Grab Bag. This might contain such things as an up-to-date medications list or letter from GP or your Consultant. It might also include specialist material to educate nurses on the importance of timely medication administration. And of course, you would be encouraged to pack your pyjamas/nightie and slippers!
Tanith mentioned a new drug treatment (Produodopa) that is available through NHS England and soon to be Wales and Northern Ireland. It is her intention to help make sure that this would be something NHS Scotland would offer, so that people living in Scotland are not disadvantaged – especially those who the new drug could benefit (which is not everyone).
Parkinson’s Excellence Network will celebrate its ten year anniversary in 2025. There is going to be an Audit that will take place, which is an opportunity for each Parkinson’s service to consider how well they are performing. The image below is from a flyer that was brought to the Get-Together, giving us a preview of the forthcoming audit. To find out more information and the results of the 2022 Audit please see the UK Parkinson’s Audit – Transforming Care webpage.
