Raising awareness of compulsive and impulsive behaviour

Impulsive and compulsive behaviour can have a devastating impact. The more that healthcare professionals and people affected by Parkinson's know about this issue, the greater the chance that changes to medication can be made that will minimise the effects.

Some people with Parkinson's who take dopamine agonists have problems controlling compulsive or impulsive behaviour.

It can also affect people taking other Parkinson's drugs, including levodopa.

What we believe

We believe that people affected by Parkinson's have a right to be told that impulsive and compulsive behaviour is a possible side effect of their Parkinson's medication right from the start of their treatment.

People living with Parkinson's who have signs of impulsive and compulsive behaviour should have their medication reviewed and changed as necessary after discussion with their consultant or Parkinson's nurse.

Medical professionals should actively discuss impulsive and compulsive behaviour with people living with Parkinson's and their carers and involve them in all decisions.

Find out more: Impulsive and compulsive behaviour as a side effect of Parkinson's medication - our policy statement

What are we doing to raise awareness?

It's really important that healthcare professionals understand the issue and we are working hard to influence them.

• We're funding compulsive behaviour research looking at the risk factors of impulsive and compulsive behaviour and how they could be managed.
• In collaboration with Parkinson's nurses, we've produced a Impulsive and compulsive behaviour in Parkinson's information tool to ensure that professionals have an informed conversation about impulsive and compulsive behaviour with people affected by Parkinson's.
• We provide information about Parkinson's drugs and compulsive and impulsive behaviour for people affected by Parkinson's and for healthcare professionals.
• We've raised this issue in the media to make sure people affected by Parkinson's and professionals know about impulsive and compulsive behaviour.
• We've written to many relevant organisations telling them about these side effects and highlighted the issue in our training and resources for professionals.

We've set up a dedicated impulsive and compulsive behaviour discussion forum for people to share their experiences and get support.

And we've raised awareness in The Parkinson, our membership magazine, with an in-depth interview with our impulsive and compulsive behaviour consultant, Stephen Williams (pictured right):

Stephen Williams: impulsive and compulsive behaviour and me - article from The Parkinson winter 2011/12 (PDF, 790KB)

How are we going to monitor progress?

We've set up a steering group, which will monitor our plans to tackle this issue. The group will bring together people affected by Parkinson's, medical professionals, researchers and Parkinson's UK staff.

The steering group will oversee our plans and maintain the momentum of this campaign.

Impulsive and compulsive behaviour discussion day

We hosted a discussion day on 13 January 2011 to allow people to share their experiences of this behaviour and to raise awareness of the issue.

We've taken the ideas that were discussed on the day and put it together in an action plan for impulsive and compulsive behaviour (PDF, 62KB).

View some of the presentations given on the day:

• Impulsive and compulsive disorders in Parkinson's - Dr Iracema Leroi (PowerPoint, 3.6MB)
• The work of Parkinson's UK on impulsive and compulsive behaviour - Daiga Heisters (PowerPoint, 173KB)

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