Mental health matters too

For many people living with Parkinson’s, mental health symptoms are the most distressing aspect of their condition. But mental health symptoms are often overlooked, with health and care support focusing on movement-related symptoms. This must change. 

Mental health symptoms impact a significant proportion of the Parkinson’s community.

At any given time, up to 40% of people with Parkinson’s will have depression and up to 31% will experience anxiety. 

People with Parkinson’s can also experience acute mental health symptoms.

Evidence indicates between 50% and 60% of people with Parkinson’s develop psychotic symptoms as their condition progresses.

A fifth of people with Parkinson’s may also experience impulsive and compulsive symptoms. 

However, our community tells us that too often, treatment focuses on movement-related symptoms.

Our mental health research revealed that 65% of people with Parkinson’s are not confident that their needs were being met by healthcare professionals.

It's important that people with Parkinson's receive an accurate diagnosis and effective treatment for any mental health problems. But too often this isn't happening.

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.

Person with Parkinson’s

What is current state of mental healthcare for people with Parkinson’s?

In 2018, Parkinson’s UK supported the All Party Parliamentary Group on Parkinson’s to investigate the mental healthcare received by people with Parkinson’s, publishing a report, Mental health matters too.

We found that people with Parkinson's often wait months and in some cases years to access treatment.

Also the care they receive is often disjointed, not tailored to their needs, and from professionals with little understanding of their condition.

What is Parkinson's UK doing to improve access to mental health support for people with Parkinson’s?

Since its publication, we have been using the findings from Mental health matters too to call on decision makers to urgently improve the system and advance the recommendations made in the report. This includes:

  • working closely with mental health professionals to map the current provision of mental healthcare for people with Parkinson’s 
  • developing Parkinson’s-specific training for mental health professionals
  • collaborating with sector partners to call on the Government to address the mental health needs of people with long-term conditions
  • securing meetings with the Government to underline the specific mental health needs of people with Parkinson’s.

What can I do to support Parkinson's UK's work?

You can help us improve the system by sharing your experience, good or bad, of mental health support.

We need examples of where things have worked well, and where the current system needs to improve for people with Parkinson’s.

Your personal stories will have a real impact, helping influence decision makers.

Download the full parliamentary report into mental health and Parkinson's

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