New tool to ensure families are involved in best interest decisions

Charities work with law firm to highlight rights of families under Mental Capacity Act

A new resource has been developed for parents who feel that they are not being appropriately consulted about the welfare of their loved ones.

Ambitious about Autism, Mencap and the Challenging Behaviour Foundation worked with Irwin Mitchell Solicitors to develop the tool, following concerns that many professionals are failing to appropriately consult with families, as required under the Mental Capacity Act 2005.

In its latest report into deaths of people with a learning disability in NHS care, Mencap found that many health professionals are failing to abide by the Act and ignoring crucial advice from families.

A leaflet is now available which will support parents who have concerns that they are being excluded from decisions that social care or health professionals are making about their adult son or daughter. These may be decisions about where the person lives, what care they are getting, how they spend their time or medical treatment.

Parents will now be able to use two template letters which are intended to help family members who have not been involved, or are concerned that they will not be involved in the best interest decision-making process in the future.

Alex Rook, solicitor at Irwin Mitchell says: “If an individual lacks the mental capacity to make a decision for themselves, that decision must then be made in their best interests in accordance with the requirements of the Mental Capacity Act 2005.

“The Act requires all professionals, including those from local authorities and the NHS, to consult with family members when an adult lacks the mental capacity to make the relevant decision themselves. The law on this is clear. We want families to know their rights.”

Belinda Blank, Transition Liaison Officer at TreeHouse School which is run by Ambitious about Autism, says: “Families are very concerned when their young people reach the age of 18 and transfer from children's to Adults services, that this may involve losing control over decisions made about their care or medical support. We hope that this leaflet and the letter templates will help reassure parents and carers that they can take simple steps to ensure they remain consulted at all times.”

David Congdon, Head of Campaigns and Policy at Mencap says: “We know from our campaigning work how serious the consequences can be when families of people with severe learning disabilities are not listened to. They often have invaluable knowledge about their son or daughter, for example, they understand the subtle ways in which they communicate or express that they are in pain.

“It is crucial that professionals listen to family carers and use their knowledge to inform decisions being made. This applies to all decisions – those about medical treatment and social care as well as any other decision which affects the person’s life. This is not just good practice it is the law. It is important families understand this and feel able to challenge when they are not being involved.”

Vivien Cooper, Chair, The Challenging Behaviour Foundation, says: “Family carers who contact our helpline often describe being excluded from decision-making. Families have a wealth of knowledge and expertise about the individual and their history as well as being a long term source of love, care and support. These new resources will empower families to ensure they are appropriately involved in the decision-making process.”

Parents can download the leaflet at or see the CBF's Frequently Asked Questions section about Making Decisions.

To view the press release as a pdf, click here.

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