Over 100 clinicians from a range of disciplines came together virtually on 26 November 2020 to attend the second UK Parkinson's Excellence Network Mental Health Hub meeting.
From exploring new research into treating hallucinations, to debating new approaches to the mental health workforce, the virtual event was a meeting full of lively debate. Below, the event’s co-chairs, Jennifer Foley, neuropsychologist at the National Hospital for Neurology and Neurosurgery, and clinical lead of the Mental Health Hub, and Sam Freeman Carney, Parkinson’s UK’s Senior Policy and Campaigns Adviser on mental health and dementia, share their experiences from the day.
Updates from Parkinson’s UK and mental health hub working groups
Professor Eileen Joyce talked about a working group looking at improving access to clozapine for treating Parkinson’s psychosis. A survey of Parkinson’s services revealed around 70% of Parkinson’s services have not prescribed clozapine, but when asked ‘would you like your patients to have access to clozapine?’, over 90% said ‘yes’.
Sam Freeman Carney highlighted the recent success of a joint webinar between NHS England and NHS Improvement and the Neurological Alliance on neurology and mental health for Improving Access to Psychological Therapies (IAPT) therapists. Katie Goates (Healthcare Relationships Manager, Parkinson’s UK) spoke about Parkinson’s Connect, which is the evolution of Parkinson’s UK information and support services. A key development is that health professionals will be able to directly refer people with Parkinson’s into Parkinson’s UK services, where they will then begin to receive personalised support, including support for their mental health and wellbeing.
COVID-19 - How to tackle challenges of service provision during the new normal
Janet Niven, who lives with Parkinson’s, gave an account of the difficulties she had faced in getting support for her mental health during lockdown. After being turned down for support from the community mental health team, she was referred to a health psychologist, which she felt was helping before the sessions were cut short when the psychologist was redeployed. She also no longer has access to the activities that used to help her mental wellbeing.
“I now feel I am in a no man's land[...] The local swimming pool is open but only if you are a competent lane swimmer. I don’t know when dance classes are going to resume. When life will go back to the ‘new’ normality” Janet, person with Parkinson’s.
Parkinson’s UK have heard from thousands of people like Janet through a survey carried out with Lancaster University. Fiona Eccles, Clinical Psychology researcher gave an overview of the results, which included increased anxiety for 31% of people with Parkinson’s and worsening of hallucinations for 9%.
These talks set the tone for an engaging panel discussion looking at the challenges and potential solutions to providing mental health care during the pandemic. One suggestion came from Emma Edwards, a Parkinson’s Nurse in Plymouth: her service changed their criteria for a home visit to include anyone with Parkinson’s, meaning they were then able to offer virtual, telephone and face to face support to their patients during the pandemic.
Understanding and supporting neuropsychiatric symptoms and dementia in Parkinson’s and Lewy body dementia
Chris Maddocks who received a diagnosis of dementia with Lewy bodies in January 2020, gave a talk on her journey from initially being misdiagnosed, the difficulties she has faced living with dementia and her experiences of care in lockdown. Chris shared her really poor experience of hospital care during the pandemic, whereby after being admitted to hospital she was moved between several wards:
“It is very important I take my Parkison’s medication at set times. I wasn’t being given it at the correct times as my medication timings did not fit in with their times for giving out medications...I couldn’t understand why my Parkinson’s symptoms were worsening and I was having hallucinations.” Chris, a person with dementia with Lewy bodies.
Attendees then heard from Jennifer Foley who spoke about how hallucinations and delusions are experienced by people with Parkinson’s and Lewy body dementia. This was followed by Suzanne Reeves, who discussed understanding and managing hallucinations in people with Parkinson’s. She also shared details of the TOP HAT study, a new drug repurposing study, investigating if the cancer drug ondansetron could be more effective in reducing Parkinson’s hallucinations than other medications currently available.
Alison Killen from Newcastle University discussed her research on providing support to people with dementia with Lewy Bodies, and an evaluation of a pilot support and information group for people with dementia with Lewy bodies and their care partners.
Rachel Thompson is the first Admiral nurse dedicated to Lewy body dementia and spoke about the tailored support she provides to people and their families.
Further discussions and idea sharing in interactive workshop sessions
The meeting broke into workshop groups in the afternoon, tackling three key topics: the Parkinson's and mental health workforce, evidence and data on integrated care and better support for carers.
In the session discussing workforce, multidisciplinary working across physical and mental health professionals, and the earlier introduction of Parkinson’s in psychology, training were central. In the evidence and data session, it was stressed that measures of both quality of life and financial impact are needed when making cases for funding. In the carer support session, one of the key points highlighted was the need for funding to be allocated for carers’ needs when a person is diagnosed.