We are pleased to see that more people are now being signposted to Parkinson's UK for information and support when they are diagnosed. But information from health professionals needs to improve.
"Key problem is diagnosis delivery. Mine was appalling. No information, no support, no contact. Three weeks of mental anguish ensued. Nurse at Parkinson's UK rescued me. This is not an uncommon experience." (YLYS 2017)
Where else does information need to improve?
42% responding to the Your Life Your Services survey were not provided with enough information about new medication, including potential side effects.
"Once one of my Parkinson's medications was altered and I had the most terrible hallucinations. My PD Nurse had gone on holiday and had not warned me of the possible side effects of this change. The hallucinations lasted for two weeks it was one of the worst experiences I have ever had." (YLYS 2017)
62% responding to the Your Life Your Services survey said they were not provided with information about support for carers.
"We have never received any information for a carer and really have no idea regarding carer support etc. This all adds to further stress and depression for me as I really worry about how much my husband has to help me with the regular daily things, washing and dressing, as well as sort my medication, chase prescriptions, sort appointments etc. The list seems to be endless and although I do as much as I can, I cannot help but feel a burden." (YLYS 2017)
Only 11% responding to Your Life Your Services were provided with information about Apomorphine, only 9% about Duodopa and 15% about Deep Brain Stimulation.
70% responding to Your Life Your Services were not provided with information about taking part in clinical trials.
"I would like to learn more about local clinical trials of medication and good information about the new drugs becoming available" (PREM 2017)
Care services in the UK Parkinson's audit say that only 36.8% of people with markers of advanced Parkinson's had a recorded discussion about end-of-life.