More than 12,000 Parkinson's Disease sufferers in Scotland are being let down by health and care services, with missed waiting times and a lack of specialist nurses, a charity has warned.
Parkinson's UK in Scotland said none of Scotland's mainland health boards is meeting a 12 week target for referral to a specialist, with patients in some areas having to wait for more than 40 weeks.
While Scotland should have more than 40 specialist nurses, there are fewer than 30. Meanwhile one in ten consultant posts in medicine for older people and neurology are unfilled.
A report for the charity, backed by leading doctors, says delays add to the anxiety and distress patients and their relatives suffer and can delay access to other therapists and services.
The study comes a day after the Scottish Government faced criticism over a failure to deliver on a pledge of post-diagnostic support for newly diagnosed dementia patients.
Parkinsons UK is calling for urgent action to meet the health and social care needs of a growing Parkinsons population. The number of people diagnosed with the incurable neurological condition – currently around 12,400 in Scotland – is predicted to increase by 40% within the next 20 years.
The charity’s report, backed by leading clinicians, makes 13 recommendations including a call for the establishment of multi-disciplinary Parkinson's teams to provide a more comprehensive and personalised approach.
For most patients, Parkinson's affects every aspect of daily life, Annie Macleod, Scotland Director at Parkinson’s UK, said.
She added: “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."
Only the Western Isles Health Board has adequate provision of specialist nurses, she says, while NHS Lanarkshire and NHS Lothian have half a s many as they should have.
Ms Macleod said “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.
“Parkinson’s UK in Scotland finds these delays wholly unacceptable. 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."
David Allan from Alloa had his Parkinson’s diagnosis confirmed in 2012 after living with symptoms for several years. 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. .”
Labour's Shadow Health Cabinet Secretary, Monica Lennon MSP, said: "Despite the hard work and dedication of staff, it is impossible for just 30 specialist Parkinson's nurses to give the 12,400 people living with the condition in Scotland the level of care they need.
"People were promised they’d be seen within 12 weeks of being first referred, but in reality some have waited for 40 weeks or longer. That is simply not acceptable."
A Scottish Government spokesperson said: “We welcome this report from Parkinson’s UK and will consider it closely as we continue to develop Scotland’s first National Action Plan on Neurological Conditions. The public consultation on our draft plan closes on Friday and we will publish our final plan later this year.
"Since 2016 we have invested an extra £2.5 million of recurring funding into the specialist nursing and care fund. The action plan will build on improvements already introduced, such as extending free personal care to all those under 65 from this April, as well as increasing specialist nurses across the country who provide valuable care and support to people living with conditions like Parkinson’s.’’
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