Those fighting the condition face long waits for diagnosis and a lack of specialist care
Health and social care services are struggling to meet the needs of Scots with Parkinson’s.
From diagnosis to ongoing care, many people with the condition across Scotland are facing major issues in accessing the care they need from overstretched local NHS and social care services, a report from Parkinson’s UK in Scotland has shown.
The charity’s study, 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.
The report highlights unacceptably long waiting times for diagnosis and the nationwide shortfall in Parkinson’s nurses as major concerns. It also recommends the establishment of multi-disciplinary Parkinson’s teams to provide a more holistic, comprehensive and person-centred approach to Parkinson’s care.
Annie Macleod, Scotland director of Parkinson’s UK, said: “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 one 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.”
Macleod also highlighted the struggle that those who are suspected to have Parkinson’s face in getting a diagnosis.
“People with Parkinson’s and their families tell us of the anxiety caused by delays in diagnosis,” she said. “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 two NHS boards serve about a third of Scotland's population.
“Parkinson’s UK in Scotland finds these delays wholly unacceptable. At least one in ten 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.”
Dr Carl Counsell, consultant neurologist at NHS Grampian and UK Parkinson’s excellence network lead for Scotland North, said: “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.
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.
He said: “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.”
