Our work to improve mental health support

Sunday 10 October is World Mental Health Day. To coincide with this year's theme, Mental Health in an Unequal World, we're sharing the work we’re doing to improve mental health support for people with Parkinson’s, and how you can get involved.

Mental health and Parkinson's

We know that for the majority of people living with Parkinson’s, their symptoms of anxiety or depression are the most distressing aspect of their condition. At any given time, up to 40% will have depression and up to 31% will experience anxiety.

This is considerably higher than the 17% of the general population who will experience a common mental health problem. The mental health of people with Parkinson's is often overlooked, with treatment focusing on movement-related symptoms. 

A person with Parkinson's told us:

"There doesn’t seem to be an understanding of the mental health difficulties of Parkinson's disease. The focus seems to be on movement and motor symptoms and a reluctance by professionals in general to talk about the mental side, which is more difficult and challenging than the physical aspects." 

The "Mental health matters too" report found that while three quarters of people with Parkinson's surveyed felt that their mental health problems impacted their quality of life, 65% were not confident that their needs were being met by healthcare professionals. You can read the full report here.

Since the report's publication, we have been working closely with decision makers to change this, including securing agreement from NHS England to improve training on Parkinson's for mental health professionals, which we're in the process of developing. We're also urging the National Institute of Health Research to prioritise funding Parkinson's and mental health research.

15 million people left out of the Mental Health Recovery Plan

We were especially alarmed that the Mental Health Recovery Plan (the government's plan to respond to the mental health impacts of the pandemic) makes no reference to the needs of the 15 million people living with long-term physical health conditions in England, including people with Parkinson's.  

We know that the pandemic has impacted the mental health of people with Parkinson’s. Lancaster University’s research last year found that more than a quarter of respondents experienced increased tremor, anxiety and sleep problems. And around 1 in 10 respondents reported an increase in hallucinations. 

We're at a pivotal time for our healthcare services. Now is the time for the government to play its part and step towards equality. 

Last month, we met with Nadine Dorries, the government minister responsible for mental health in England. Working with other charities like Diabetes UK, National Voices, MS Society, Macmillan Cancer Support and Arthritis Action, we underlined the specific challenges that people with Parkinson's and other long-term conditions face in accessing mental health support, and the urgent action the government must take. 

We also highlighted that the exclusion of people with Parkinson's from the Mental Health Recovery Plan means people often find themselves "lost in the system". We'll be picking up the commitments made in that meeting with Gillian Keegan, the newly appointed government Minister for Care and Mental Health. 

Get involved and share your story

In the meantime, if you'd like to get involved in our campaigning work to improve services please email [email protected].

If you'd like to share your experiences of Parkinson's and mental health, please share your story.