People with Parkinson’s across Scotland are struggling to access the care they need, from initial diagnosis to ongoing care and support, a new report by charity, Parkinson’s UK, suggests.  

More than 12,000 people in Scotland currently have the condition and this number is projected to rise past 17,000 by 2039.  

The disease is the second most common neurodegenerative condition after Alzheimer’s. Sufferers can experience reduced mobility and have difficulty talking, swallowing or writing, alongside other symptoms such as fatigue, pain and mental illness.  

There is no cure and no way to stop the condition worsening.   

The charity warns waiting times for diagnosis are “unacceptably” long.  

There is no straightforward test to confirm Parkinson’s and most doctors rely on their judgement to identify the condition. With a typical GP likely to see just one new Parkinson’s every three years, access to a specialist neurological consultant is vital.  

In 2017-18, two NHS boards – Western Isles and Shetland – were able to meet the Scottish Government’s target for 95% of people to be seen by a consultant within 12 weeks of being referred by a specialist, with patients in some other boards facing waits of up to 42 weeks.  

Parkinson’s UK says high-quality services for people with the condition cannot be provided ‘without increasing the number of consultants with expertise in the condition’. 

After diagnosis, dedicated Parkinson’s nurses with detailed knowledge of the condition and the varied medicines used to manage symptoms are essential, but with 36 Parkinson’s nurses to cover all of Scotland, the charity warns ‘too many people remain without meaningful support’.  

Scotland performs better than other UK nations for the next stage of treatment, which is best delivered by multi-disciplinary teams bringing together consultants, specialist nurses, occupational therapists and speech and language specialists.  

The report points to Angus as an example of best practice, where teams work in communities and offer annual reviews to patients and carers.  

Another area of concern is the support on offer for Parkinson's symptoms that go beyond movement issues, such as mental health, fatigue and continence problems.  

For many people living with the condition, these present the biggest barriers to daily living.  

Mental health problems such as anxiety and depression are common and 50-60% will experience hallucinations and delusions at some point.  

Clearer and more consistent routes from Parkinson’s treatment to mental health specialists are needed, the charity says.  

The Scottish Government is currently consulting on a new plan for neurological conditions that it will publish later this year.  

The Government hopes this will bring about improvements for all those with neurological conditions by coordinating health and care services.  

A spokesperson said: “Since 2016 we have invested an extra £2.5m 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.’’ 

Annie Macleod, Scotland Director at 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.” 

David Allan, who was diagnosed in 2012 and is now a trustee of the charity, added: "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.”