What does good multidisciplinary care look like?
"I receive outstanding service from my Parkinson's team and feel very involved in my care. I get an annual review with a multi disciplinary team at which I have a 30 minute appointment each with a Parkinson's nurse, my consultant. OT and physiotherapist. I also get height and weight taken and resting BP then I stand and get BP taken again. The whole appointment is 3 hours long. I complete a non motor symptom questionnaire and get a cognitive assessment. The following week I receive a letter from the Parkinson's Nurse which summarises the way forward and any medication changes/referrals made. I am free to ask any questions I like and the atmosphere is very relaxed. I think everyone would benefit from this service." (YLYS 2017)
What needs to improve?
Access to care varies and not everyone’s needs are being met.
"I am experiencing excessive waiting times to see my consultant neurologist for my annual checkup on my Parkinson's…I have found previous appointments to be rushed and lacking evidence of a long term care plan; my UPDRS score has not been determined/recorded at any consultation." (YLYS 2017)
While 88% responding to the PREM survey said they could access Parkinson's Nurse, 19% responding to Your Life Your Services were either unable to access one or not sure whether they could.
"My Parkinson's nurse is very good, but I feel she needs more help. One nurse for a large area is far too much for her to manage." (YLYS 2017)
31% responding to Your Life Your Services were either unable to access a physiotherapist or not sure if they could. We had similar findings for occupational therapists (30%) and speech and language therapists (26%).
"I have been referred to physio several times; it is ridiculous the input isn't continuous. There need to be a lot more physios available. I have made my own contact with OTs and have received variable service, some of it excellent, other failing. It is still unclear what you can get free of charge and what you should pay for yourself." (YLYS 2017)
While 84% responding to the PREM survey said they could contact Parkinson's Nurse between scheduled reviews, 23% responding to Your Life Your Services were not able to or not sure if they could.
46% of people living in care homes responding to Your Life Your Services are not satisfied with their access to health care services. Also, 35% are not satisfied with the attention to their condition by care home staff.
37% of people who had mental health problems associated with their Parkinson's, such as depression or anxiety felt they were not being addressed.
"I am mostly affected by depression, anxiety, pain, sleep disorder, night terrors and hallucinations. These are not addressed as there is no Psychiatrist on the team. I now see a psychiatrist who has told me he knows very little about Parkinson’s and is finding it difficult to find suitable treatment for me. I have had to call the local crisis team as my condition became so extreme I was suicidal. They also admitted to knowing very little about Parkinson's but got me through my crisis by prescribing very strong drugs." (YLYS 2017)
88% responding to the PREM survey felt that their Parkinson's services are either improving or are already good. However, 41% responding to Your Life Your Services think services need to improve or are getting worse.
Over 90% responding to the PREM survey and 70% responding to Your Life Your Services rated the quality of care provided by their Consultant as "Excellent" or "Good". 90% of PREM respondents and 77% of Your Life Your Services respondents rated care from their Parkinson's Nurse as "Excellent" or "Good". The findings for physiotherapists, occupational therapists and speech and language therapists are similar.
While 78% responding to the PREM survey felt they are always or mostly involved in decisions about their care, only 58% responding to Your Life Your Services felt this way.
"There is a tendency not to treat you as an individual with a separate view of things. I want and expect to be involved in my care, discussing pros and cons of therapies/drugs/actions." (YLYS 2017)
We asked people if they felt their service treats them as individuals, considering their unique concerns, other health conditions and cultural needs. 91% responding to the PREM survey felt they were always or mostly treated this way but only 69% responding to Your Life Your Services felt this way.