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Parkinson's sufferers "dissatisfied with their care"

People with Parkinson's disease (PD) and their carers throughout the UK are calling for more involvement in the management of their condition, according to the findings of a survey.

The survey, conducted by The Cure Parkinson's Trust, in collaboration with GlaxoSmithKline, reveals that almost two thirds of sufferers and carers would like to be more involved and play a greater role during their appointments. Many also feel that limited appointment times and the lack of support provided by the medical system do not allow them to discuss their concerns.

The new survey, entitled "Making Every Appointment Count" was designed to generate insight into the frequency and quality of PD medical appointments and involved 84 people with Parkinson's and carers across the UK.

The survey findings demonstrate the importance of continuity of care and flexible access to healthcare professionals in the management of PD. Although two thirds of respondents report that they see the same hospital specialist or PD nurse specialist at each visit, they feel they are not obtaining the most benefit from their medical appointments.

One third of respondents find it difficult to access medical support when needed and nearly all said they would like to see the healthcare professionals who manage their PD more often across the year. In addition, almost two thirds said there is a lack of take-home materials available to improve their understanding and management of the condition. As a result, 70% of those surveyed are left feeling discouraged, pessimistic, frustrated or anxious following their appointments.

Tom Isaacs, Co-founder, The Cure Parkinson's Trust commented: "Parkinson's disease is a complex, unpredictable and individual condition. The findings from this survey demonstrate a clear need for healthcare professionals to ensure routine appointments are made as effective as possible, so that people with Parkinson's and their companions can extract all the information and the support that they need from every visit.

"It is important for people with Parkinson's and their healthcare professionals to engage fully with one another as openly and constructively as possible and clearly there is some way to go before this is achieved in all cases."

The Cure Parkinson's Trust

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"Between appointments at hospital with the neurologist there is nothing, no advice on how to support your loved one with thei health issues, or how to cope on a day-to-day basis. Where to go for advice? Our neurologist is kind, but there are so many issues that I feel cannot be discussed because of so many other patients waiting to be seen" - Jackie Gregory, Liverpool