From diagnosis to ongoing care, many people with Parkinson's across Scotland are facing major issues in accessing the care they need from overstretched local NHS and social care services. That’s the conclusion drawn by Parkinson's UK in Scotland in a major report on Parkinson's services published in February 2019.
The charity's report, backed by leading clinicians, makes 13 recommendations that need urgent action if Scotland is to meet the health and social care needs of the growing Parkinson's population. About 12,400 people in Scotland currently have a Parkinson's diagnosis - and that number is predicted to increase by 40% within the next 20 years. Parkinson's is a complex incurable neurological condition that affects every aspect of daily living.
The report highlights unacceptably long waiting times for diagnosis and the nationwide shortfall in Parkinson's nurses as major concerns. The report also recommends the establishment of multi-disciplinary Parkinson's teams to provide a more holistic, comprehensive and person-centred approach to Parkinson's care.
Parkinson's UK Thinks...
Annie Macleod, Scotland Director at Parkinson's UK, says:
"This is the first time that we’ve shone such a searching spotlight on Parkinson's services in every part of Scotland. We recognise that people providing Parkinson's care are doing an incredible job, but we’ve been challenged by people with Parkinson's to discover whether their individual experiences are unique or part of a bigger and worrying picture. Sadly, we've found problems and failings are not isolated incidents but are part of a Scotland-wide under-provision of services for people with Parkinson's.
"All but 1 Health Board - Western Isles - has inadequate specialist Parkinson's nurse provision. In two heavily populated areas – Lanarkshire and Lothian – there are half the number of nurses that there should be. Across Scotland there should be at least 40 Parkinson's nurses, instead we have less than 30. In Orkney and Shetland, there are no local Parkinson's nurse at all.
"People with Parkinson's and their families tell us of the anxiety caused by delays in diagnosis. Despite this, neurology services are routinely missing the Scottish Government's 12-week target for new outpatient referrals in all but the smallest island Health Boards. These targets are typically missed by a large margin. Last summer, people who needed to see a neurologist in NHS Grampian took up to 42 weeks to do so. It took up to 33 weeks in NHS Greater Glasgow and Clyde. Between them, these 2 NHS Boards serve about a third of Scotland's population.
"Parkinson's UK in Scotland finds these delays wholly unacceptable. At least 1 in 10 neurology and medicine for older people consultant's posts are unfilled, and urgent action must be taken to recruit consultants with expertise in Parkinson's, speed up diagnosis and enable people with Parkinson's to be properly monitored and have timely access to treatment.
"We welcome the Scottish Government’s new National Action Plan for Neurological Conditions and see it as a real opportunity to improve services and support for people with all neurological conditions, including the 12,400 people currently living with Parkinson's in Scotland. We believe that this Plan must be properly resourced with strong leadership, to enable NHS Boards and Health and Social Care Partnerships to provide the support that it needed to keep people with Parkinson's as well as possible for as long as possible."
Achieving high quality care
Dr Carl Counsell, consultant neurologist at NHS Grampian and UK Parkinson's Excellence Network Lead for Scotland North, says: "Parkinson's is the second most common neurodegenerative condition after Alzheimer's. It is a complex progressive disorder, which can have profound effects on many aspects of individuals' lives, both those living with it and their family members.
"This report highlights the growing impact Parkinson's will have in Scotland as our population ages and the need to have appropriately planned and resourced services to deal with this. The 13 recommendations require meaningful partnerships between Scottish Government, NHS Boards, social care providers and Parkinson's UK. Everyone involved in providing Parkinson's care and services wants to ensure that all people affected by Parkinson's throughout Scotland receive consistently high-quality care throughout the course of the condition. This is challenging but achievable if we all work together."
David Allan from Alloa had his Parkinson's diagnosis confirmed in 2012 after living with symptoms for several years. Previously working in public relations across Asia and the Middle East, David's diagnosis saw him return to Scotland and he's recently been appointed as a Trustee of Parkinson's UK.
"Despite the best efforts of the people in the NHS that we see working flat out across Scotland, there's a real feeling amongst the Parkinson's community that we are all too easily overlooked in terms of resources and investment. Too often we have to wait too long for diagnosis. Follow up appointments are too short and infrequent and accessing other therapists and services can be a real struggle. Specialist Parkinson's nurses have a vital role but when they are so overworked, we don’t get to see them as often as we should.
"Parkinson's isn't going away any time soon, not for me and the community and not for the NHS either. With numbers significantly increasing in the coming years it's vital that Scottish Government, NHS Boards and Health and Social Care Partnerships face up to the challenges that Parkinson's presents and ensure that specialist recruitment is increased and services re-shaped to make them fit for purpose."
Read our new report into Parkinson's services in Scotland