Identifying priorities for People with Parkinson's Survey - Survey results will be available soon.......
MAKING EVERY APPOINTMENT COUNT - Patient Survey October 2009
New research findings reveal almost two thirds of people with Parkinson’s and their carers want more involvement in the management of their condition
The Cure Parkinson’s Trust launches a new resource to support people with Parkinson’s to take more control over their condition
People with Parkinson’s (PwPs) and carers throughout the UK are calling for more involvement in the management of their condition, according to the findings of a survey launched today. The survey, conducted by The Cure Parkinson’s Trust, in collaboration with GlaxoSmithKline, reveals that almost two thirds of PwPs 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 PwPs 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 PwPs and carers 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 PwPs and carers 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 of PwPs and carers say there is a lack of take-home materials available to improve their understanding and management of the condition. As a result, 70 percent 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 survey findings support the development of Parkinson’s Self-Assessment Tool, a resource designed with PwPs, to help them gain a better sense of the overall pattern of their PD and how it affects them in day-to-day life. The tool, developed by The Cure Parkinson’s Trust in conjunction with GlaxoSmithKline and the Parkinson’s Disease Society, allows PwPs to monitor their own disease and better equips them to discuss their condition during appointments with healthcare professionals. PwPs’ difficulties with self-organisation and memory as a result of their PD can make it difficult for them to remember everything they want to discuss, and 70 percent of PwPs and carers surveyed said a resource such as the self-monitoring tool, to help them prepare for and focus discussions during their appointments, would be useful.
Managing every day aspects of life can often be difficult with PD because of the unpredictable nature of the condition and this can have a significant impact on quality of life. However, over half of PwPs and carers surveyed said their last PD appointment made no difference to the quality of their general day-to-day life. Over a quarter are not satisfied with the support provided by the medical system and the overall management of their PD, leaving them feeling confused and worried that they are not receiving optimal management.
London, 09:00 BST, 1st October, 2009:
For further details on the survey and self assessment tool, click here