THE BLOG

People With Parkinson's Confused and Abandoned After Diagnosis

03/02/2015 11:41 GMT | Updated 04/04/2015 10:59 BST

Suzanne was alone when the words 'you have Parkinson's' were delivered by her neurologist. During an appointment she described as being 'as short as speed dating', she was hit with the unexpected, life-changing news she had Parkinson's. Like most people, Suzanne knew little about this degenerative condition which affects all aspects of life including walking, speech and sleep, and for which there currently is no cure. After the initial shock she asked what was next but was dismissed with 'you won't die of it, you'll die with it' and sent away with a head full of questions to be seen again in another six months. Despite Parkinson's being an incredibly complex condition, no information about it was forthcoming and no pointers were offered as to where she may find a listening ear in her local area or activities to help ease her debilitating symptoms. But while the diagnosis was an undeniable body blow, it was the blunt and hurried way the news was delivered and the sheer lack of support that left her feeling the most frightened and alone.

This experience is echoed across the UK with new research showing over a third of people with Parkinson's (38 per cent) were given their life-changing diagnosis by a clinician in fifteen minutes or less and three-fifths (60 per cent) were sent away without any written information whatsoever. Over half (54 per cent) were not informed about where they could get support in their local area.

This chronic lack of information and support is leaving people with Parkinson's feeling discarded and deserted at the toughest time of their lives. This is simply unacceptable. If patients are given tools to help them manage their Parkinson's at diagnosis it would not only save them, and their families, months of heartache and uncertainty but also reduce the chance of them reaching crisis point and ending up on an over-stretched A&E ward.

There are plenty of examples where the treatment and care of people with Parkinson's are exemplary but there are still areas where it simply isn't up to scratch. A recent audit of Parkinson's services highlighted some serious shortcomings in care and showed wide variation across the UK. Not everyone with Parkinson's has access to a specialist Parkinson's nurse or therapies such as occupational therapy and physiotherapy and many professionals don't receive training in how to manage Parkinson's. And while many professionals involved in the care of Parkinson's patients are running great services for their patients we also know that others are struggling - battling against bureaucracy, budget cuts, and a lack of professional support.

We need to equip professionals so that they can influence local services and initiate change where they are falling short of excellent. However, we can only do this if we can harness the energy and talents of everyone with an interest in Parkinson's - patients, professionals, Parkinson's UK, and the wider Parkinson's community worldwide.

That's why we've launched the UK Parkinson's Excellence Network. The Excellence Network will bring together the voice and experience of people with Parkinson's and the expertise of professionals to transform Parkinson's services. It will provide an unprecedented opportunity for health and social care professionals to share expertise and examples of successful services with their peers, get up-to-date evidence to underpin clinical practice and collaborate on exciting new research projects.

Excellence is not an end in itself, but a means to an end. We must work hard to raise the bar so that Suzanne, and every one of the 127,000 people living with Parkinson's, gets the best possible care regardless of their age, where they live or where they are in their Parkinson's journey. With the number of people with Parkinson's expected to rise, we cannot afford to settle for the status quo.

For information and support, visit parkinsons.org.uk