Report: Experiences of Parkinson’s care in Gloucestershire
Parkinson's disease is a condition in which parts of the brain become progressively damaged over many years. There are approximately 1,400 to 1,500 people diagnosed with Parkinson’s disease in Gloucestershire.
Key messages
- Waiting times for a diagnosis has an impact on people’s physical and mental health.
- The first three months following diagnosis are ‘critical’, with people feeling isolated and alone following diagnosis. Both people with Parkinson's and carers said there is a lack of information provided and that they had to find support themselves.
- A lack of information and ‘vagueness’ leads people to feel they need to see a consultant more regularly. People reported being told that appointments are every six months with either a nurse or consultant.
- Some people and their carers do not always feel included in discussions around medications and in joint decision making about treatment plans.
We have made a number of recommendations to local health services based on the feedback and ideas received from contributors to this report. Download the full report below.
Downloads
I'd like to be able to talk to the doctor about things that aren't strictly Parkinson's but which I think have an impact on my Parkinson's, but there isn't time.
Gloucestershire Integrated Care Board said:
"As part of our shared commitment to improving the health and wellbeing of patients with Parkinson’s disease and their carers, we are responding directly to the insights shared through a joint project Healthwatch Gloucestershire (HWG) undertook with the support of NHS Gloucestershire ICB’s engagement and experience team. We would like to take this opportunity to thank HWG for highlighting the experiences of people with Parkinson’s disease and their carers of accessing care in Gloucestershire."
They have provided a themed response to the recommendations in our report, covering:
1. Support for Primary Care and Access to Specialist Advice
2. Diagnostic Accuracy and Initiation of Treatment
3. Multidisciplinary Support and Patient Education
4. Information on Roles, Services and Referral Pathways
5. Appointment Processes and Communication
6. Community Engagement and Carer Support
7. Frailty, Advanced Care Planning and Home Visits
8. Access, Transport and Locality-Based Care
