Results of the largest ever survey of people with Parkinson's disease and their carers has highlighted worrying gaps in access to specialist care across the nation, and has revealed that many carers are not receiving the information or support needed.

The survey of 13,000 Parkinson’s Disease Society members revealed that 15% of patients have never been seen by a hospital doctor with specialist knowledge of the condition, which the Society says is “extremely worrying” as it is a complex condition requiring specialist input.

Other findings include that: just one in five people with diagnosed with PD in the last year was diagnosed by a GP; more than a quarter of patients have never talked to a PD nurse specialist, although 90% that had felt they were “very useful” sources of information; the majority of patients are still not being assessed for or receiving therapies such as speech or language therapy to help them manage their condition; and three out of ten patients diagnosed in the last year were not given clear information about the condition and medication at the time of diagnosis.

In fact, nearly half (47%) of survey respondents expressed the need for more information about the illness, and 86% said the very reason they joined the PDS was to gain better advice or information on the disease, stressing the urgent need for better services in this regard.

Accelerating improvements
Although it concedes that there have been some “definite improvements” in health services for people suffering from PD, such as better access to specialist nurses and new therapies, the charity says it is “concerned that these improvements are not taking place quickly enough and are too often highly dependent on where people live”

And to help paint a better picture for sufferers of the condition, the PDS has called on health and social care providers work arm in arm with the charity to address the gaps highlighted by the survey, as well as researchers to use make use of the information generated by the survey “to accelerate the pace at which we can find better treatments and, ultimately, a cure for Parkinson's”.