Experiences of Parkinson's care in Gloucestershire
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Healthwatch Gloucestershire wanted to understand people with Parkinson's Disease's experience of health care as they had heard concerns through their normal feedback routes. They spoke to 153 people.
Waiting times for a diagnosis has an impact on people’s physical and mental health
Some people reported visiting their GP repeatedly with symptoms of Parkinson’s disease but experienced delays in being referred to neurology
Given the progressive nature of Parkinson’s disease and the impact of symptoms on daily functioning, people reported concerns about waiting times to see a neurologist as they are unable to start medication until this time.
The first three months following diagnosis are ‘critical’
People feel isolated and alone following diagnosis and sense of community, peer support and friendship are crucial.
There is a lack of information being provided at the point of being diagnosed, leaving people feeling overwhelmed but also left to find things out for themselves. This impacts on access to services if people are not aware of what is available to them, for example, referrals to other professionals, and management of some symptoms such as depression and nightmares.
There is a lack of information being provided to carers of people with Parkinson’s disease about how to care for their loved one and to find support for themselves.
A lack of information and ‘vagueness’ leads people to feel they need to see a consultant more regularly
Most people believe that appointments are every six months with either the nurse or consultant or alternating between them – people reported being told this by the neurologist, Parkinson’s nurse and Parkinson’s UK.
People need an ability to ‘check in’ between appointments if there are changes. People don’t always know who to go to and whether it is for the patient to book the appointment or wait to receive an appointment letter.
Many people reported positive experiences with the Parkinson’s nurses. However, some are not aware of how ‘specialist’ the nurses are and are unsure of the role of the GP in prescribing medication.
Where Parkinson’s consultants and nurses have been in attendance at groups and events, people have reported receiving insightful information about the condition, helpful advice and more awareness of available services.
Some people and their carers do not always feel included in discussions around medications and in joint decision making about treatment plans
Appointments with the consultant can be overwhelming and some people feel they are not long enough to share everything they want to or ask questions.
Some people reported difficulty managing time critical medications when in hospital environments if admitted as an inpatient.
Access to, and accessibility of, services can vary depending on where people live, and whether they live on their own or have a carer supporting them.