Scottish government to take forward our research participation proposals

In September each year, the Scottish government lays out its Programme for Government. It outlines the priority areas that the Scottish government will focus on. It covers important areas for the Parkinson’s community like health and care, and Scotland-only social security payments.

We're thrilled to see a planned new law that will make it easier for people who are often excluded from Parkinson’s research to take part. We've been raising this issue for some time now, and our influence has paid off.

New law on capacity

This will be part of a comprehensive new law to protect the interests of people who cannot make or communicate decisions themselves. This is called lack of capacity. People with Parkinson’s can lack capacity if they develop severe mental health issues, Parkinson’s dementia, or significant speech issues.

Read our information on losing capacity to make decisions.

What the new law means for research

We know that many people with Parkinson’s want to take part in research to help deliver better treatments and a cure. But at the moment it's difficult for people who don't have capacity to consent to participate. 

This makes it harder for researchers to understand the impact of some of the most challenging aspects of Parkinson’s, such as hallucinations, delusions, and dementia. It's a barrier to discovering more effective ways to manage these symptoms, which can be extremely distressing.

There are important ethical issues around research participation for people who lack capacity. But many people with Parkinson's want to take part in legitimate Parkinson’s research, even if they no longer have capacity to consent. We think this can be done without putting people at risk of harm. So we've argued for new systems that allow people to make their wishes known about future research participation should they lack capacity.

We’re looking forward to making sure the voices of people with Parkinson’s are heard as the new law goes through the Scottish Parliament and onto the statute books.

Other key areas from the Programme for Government

Other aspects of the programme for government will be important for the Parkinson’s community. We're concerned some of them will be affected by cuts in Scottish public spending announced on 3 September.

Our key takeaways:

• Commitments to reduce hospital waiting lists and waiting times will continue, but it's unclear how these will affect Parkinson’s services.
• New legal rights to breaks for unpaid carers and for residents to have visitors in care homes.
• Non-residential care charges will remain, although continued progress towards their abolition is promised.
• New social security benefits, for some people with Parkinson’s and unpaid carers will be introduced,  including Carer Support Payment, Pension Age Disability Payment and Carers Additional Person Benefit.

Read the full Programme for Government on the Scottish government website.