Parkinson's Disease Society callsl for better access to specialist services for people with the condition (Press release: 7 April 2008

Results from the largest ever survey in the UK of people with Parkinson’s and carers of people living with the condition reveal significant inconsistencies in access to specialist care across the UK.

More than 13,000 members of Parkinson’s Disease Society (PDS) responded to the Charity’s survey, and what they told us provides a significant insight into the availability of Parkinson’s services.  The survey results have been released by the PDS to launch Parkinson’s Awareness Week (7-13 April) in a report “Life with Parkinson’s today – room for improvement.”

The survey revealed the following:

• Although we are seeing a trend towards more people being diagnosed by a specialist (either a neurologist or care of the elderly physician) - key for an accurate diagnosis - things still need to improve with 1 in 5 people being diagnosed by their GP in the last year
  
• Three out of ten people diagnosed with Parkinson’s in the last 12 months were not given clear information about the condition and medication at the time they were diagnosed.  Nearly half (47%) still feel they need more information now
  
• More than a quarter of people living with Parkinson’s in the UK have never talked to a Parkinson’s Disease Nurse Specialist (PDNS) and four out of ten people with the condition have not spoken to a specialist nurse in the last 12 months
  
• Access to therapies such as physiotherapy, occupational therapy and speech and language is improving.  However, the majority of people with Parkinson’s are still not being assessed for or receiving therapies to help them manage their condition

  
Steve Ford, Chief Executive of the Parkinson’s Disease Society said:

“Specialist care is vital for people with Parkinson’s and our survey reveals that whilst there have been a number of improvements across the UK, many people are still being let down.  There is an urgent need to improve services to meet the recommendations of the NICE Guideline, which includes access to a specialist diagnosis, a specialist nurse and therapies.  Parkinson’s Disease Nurse Specialists are the number one priority for people with Parkinson’s – they’re fantastic for patients and for local health organisations too.  As we can help health providers design their services there is simply no excuse for any of the 120,000 people with Parkinson’s in the UK to be missing out on the support of a specialist nurse.”

The importance of the support and information available from the PDS also came across strongly from survey respondents.  The vast majority of people joined the PDS to get advice or information and PDS publications are rated by members as the most useful sources of information about Parkinson’s disease and how to cope with the condition.

Steve Ford added: “We hope that all health and social care professionals involved in the management of Parkinson’s will listen to what people are saying about the usefulness of the advice and support we offer and tell their patients about us.  It’s important for people with Parkinson’s and their families to know that they are not alone and that we are here to help and support them.”

The Parkinson’s Disease Society produces a range of publications for professionals.  Visit: www.parkinsons.org.uk for more information.

See also, the BGS Response on the Assisted Dying for the Terminally Ill Bill