Access to health and social care research for adults with impaired mental capacity is set to be improved with the launch of innovative new guidance today (Monday, 16 October).
This month marks ten years since the implementation of the Mental Capacity Act, a key piece of legislation in England and Wales which aims to empower, protect and support people with impaired or fluctuating mental capacity and sets out the responsibilities of professionals, families and wider society.
Work is being undertaken in Wales to examine how principles of the Act can be applied to research practice, providing researchers with sound guidance in order to improve treatment and health and social care for all members of society.
As a result, the Welsh Government through Health and Care Research Wales, the National Mental Capacity Forum and other key stakeholders, has developed ‘Research and Impaired Mental Capacity in Adults’; an easy-to-read guide for researchers who are considering engaging in health and social care studies.
The guidance underpins all principles of the Act, one of which is that all adults are presumed to have sufficient capacity to make decisions, unless there is definitive evidence that this is not the case.
Baroness Ilora Finlay of Llandaff, Chair of the National Mental Capacity Forum, has been involved in the development of the guidance.
She said: “In the last two years a national campaign and renewed commitment from health and social care has widened awareness of the principles of the Act, highlighted that mental capacity is decision and time specific, and made clear that any decision taken on a person's behalf must be in the best interests of that person.
“The suggestion that those with a mental impairment cannot make any of their own decisions is a thing of the past.”
Baroness Ilora Finlay.
The guidance was developed following the Mental Capacity: Action in Research conference held in Cardiff in March. The one-day event brought together researchers and other key stakeholders (including members of the public) from across the UK in order to develop a consensus about facilitating access to health and social care research for adults with impaired capacity to consent.
Research participant Charlotte Harding, a mum-of-two from Cardiff, was diagnosed with bipolar disorder at age 20 and is fully supportive of the new guidelines.
Charlotte, aged 31, says: “It’s very important to take part in research or be offered the chance to take part. If the guidelines are available to everyone involved in research it will make conducting studies a lot easier for researchers and participants.”
“I’ve got two sons and I often wonder if they are going to inherit my condition so for me taking part in research is a way of helping future generations. Presently there’s no cure for bipolar disorder so the more research is done now the better the chances we will have of finding one in the future.”
Victoria Shepherd, a Research Associate at Cardiff University, gave a personal perspective at the event in March and has also welcomed the new guidance.
She said: “Research involving people with conditions resulting in impaired capacity is complex, and often occurs at a difficult and challenging time for them and their families. However, research is vital to ensure people experiencing such conditions receive the most effective care and treatment.
“Researchers, health and social care professionals, and families need to feel informed and supported when considering involving those with impaired capacity in research. The guidelines reflect the balance between the need to include people with impaired capacity in research, and the need to safeguard their interests.
“It is a great resource for both researchers and the wider health and social care community, which has the potential to make a real impact on research involving those who lack capacity both in Wales and beyond.”
You can access the guidance by following this link