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Health / Parkinson’s care shortcomings highlighted in report

A REPORT by a charity dealing with Parkinson’s disease says there are “major concerns” about waiting times for diagnosis and nursing in Shetland, where one Lerwick woman still not having seen a specialist nurse a year after diagnosis.

According to Parkinson’s UK many people in Shetland and across Scotland are facing difficulties accessing the care they need from “overstretched local NHS and social care services”, from diagnosis to ongoing care.

NHS Shetland is trying to recruit a specialist nurse, with the role at the moment being served remotely from Aberdeen. Orkney and Shetland are the only two board areas in Scotland without such a specialist.

Maureen Smith, who was diagnosed with Parkinson’s just over a year ago, said: “Parkinson’s services in Shetland would be transformed if we had proper access to a specialist nurse. Despite my diagnosis over a year ago, I’ve still to see a specialist nurse.”

Maureen Smith was diagnosed just over a year ago.

The shortfall prompted Parkinson’s UK Scotland director Annie Macleod to say: “People in Shetland need consistent, local access to expert support at every stage of their condition.”

Director of nursing and acute services at NHS Shetland Kathleen Carolan said: “I apologise unreservedly if Mrs Smith has not been contacted following her diagnosis and I would encourage her to get in touch with her GP so we can make sure she gets the support she needs.”

She added that NHS Shetland’s small team of specialist nurses provided support to a wide range of neurological conditions and that had included, until recently, people with Parkinson’s disease.

“We currently have a vacancy in our specialist nursing team and once that post is appointed to, we will continue to provide local nursing support to people with Parkinson’s.

“We are committed to rectifying the issue of local access to a specialist nurse and, in the interim, we have been liaising with the Parkinson’s disease specialist nurse based in Aberdeen and we have discussed our position with representatives from Parkinson’s UK and the local support group.”

The Aberdeen based specialist also deals with other neurodegenerative conditions such as motor neurone disease.

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 – more than 50 in Shetland alone – and that number is predicted to increase by 40 per cent 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.

Macleod said: “This is the first time that we’ve shone such a searching spotlight on Parkinson’s services in every part of Scotland.

“Across Scotland, neurology services are routinely missing the Scottish Government’s 12-week target for new outpatient referrals. NHS Shetland is the only NHS Board to have met this target throughout 2017- 2018.

“All but one Health Board – Western Isles – has inadequate specialist Parkinson’s nurse provision. Across Scotland there should be at least 40 Parkinson’s nurses, instead we have less than 30.

“NHS Shetland and NHS Orkney are the only two NHS Boards that provide no local Parkinson’s nurse support. There is a remote service provided from Aberdeen by NHS Grampian, but Parkinson’s is a very complicated condition.

“People in Shetland need consistent, local access to expert support at every stage of their condition, and we are very keen to work with NHS Shetland and others to consider how this expertise is best provided within a remote community like Shetland.”

Parkinson is a progressive neurological condition that shows in three main symptoms: shaking, slowness of movement and muscle stiffness.