The results of the largest ever survey of people with Parkinson's and carers of the condition have been launched in a report 'Life with Parkinson's today – room for improvement'.

The survey, which was completed by more than 13,000 members of the Parkinson's Disease Society (PDS), provides a significant insight into all aspects of life with Parkinson's.

The results, released by the PDS to launch Parkinson's Awareness Week (7-13 April), reveal significant inconsistencies in access to specialist care across the UK.

• 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. People are missing out on this specialist support despite the fact that having access to a PDNS who can help them manage their symptoms and provide them with information and support is seen as a number one priority for people with Parkinson's disease living in the UK.

• 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 one in five people being diagnosed by their GP in the last year.

• 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.

• 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%) feel they need more information now.

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 by their local services from the time of diagnosis onwards. There is an urgent need to improve services so that every person with Parkinson's gets access to the expert help they need at diagnosis and whenever they need it throughout the course of their condition. Parkinson's Disease Nurse Specialists are fantastic for patients and there is simply no excuse for any of the 120,000 people with Parkinson's in the UK to be missing out on their support."

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."

To download a copy of the report 'Life with Parkinson's – room for improvement' or to download a copy of the findings relevant to the country of the UK you live in, visit our members' survey page.