This policy statement has been developed with advice and guidance from people with Parkinson's, the people who love and care for them, health and social care professionals and other experts.
What do we mean by mental capacity?
Mental capacity refers to whether a person is able to make decisions for themselves.
People with Parkinson's can experience problems making decisions as the condition can sometimes affect memory or concentration.
What we believe
We believe that people with Parkinson's should make decisions for themselves wherever possible and not have assumptions made about them just because of their Parkinson's.
If people are not able to make decisions, any decisions made on their behalf should be based on their known wishes.
The bodies and systems that exist to safeguard people's affairs should be as open and simple to deal with as possible.
People with Parkinson's should have the opportunity to make their wishes clear at the earliest possible stage in their illness, if they would like to do so.
Why we believe this
Despite clear rights for people to make their own decisions and have support where needed, there are problems in practice.
For example, a lack of awareness of Parkinson's can lead professionals to assume someone lacks capacity. And a lack of information can mean people don't make plans in case they lose capacity. At a later stage this can leave their loved ones without a say in their affairs.
I could only access confidential care information by being my father's Lasting Power of Attorney. I was astounded that as his closest relative I had no right to that information.
Family member of a person with Parkinson's
What's the evidence?
There is evidence that:
- the wider public, as well as people with Parkinson's, are unaware of all the systems and support that can help people anticipate these issues
- professionals have sometimes wrongly assumed someone lacks capacity because of lack of knowledge about Parkinson's and how it can affect people
- assessments are sometimes being made based on the person's disability or illness, rather than testing the person's ability to take decisions.