The Mental Capacity Act has helped many people with learning disabilities to make decisions for themselves since it came into force in 2007, but more needs to be done to ensure all professionals understand and apply it correctly. Dan Parton reports:
When the Mental Capacity Act (MCA) was introduced in 2007, it signalled a significant change in the way people with learning disabilities were treated. For the first time, they were assumed to have the capacity to make their own decisions, until proved otherwise.
With an emphasis on giving support to people, no matter how profound their disability, to make their own decisions if at all possible, it was a major step forward.
But sometimes, people with learning disabilities are still not able to make a decision by themselves, and someone else, such as a healthcare professional, has to make the decision for them, through a best interests decision process.
Recent research published by the Mental Health Foundation (MHF), that was done with the Universities of Bristol and Bradford, entitled Making Best Interest Decisions: People and processes, found that, in general, the best interests process is being used correctly and in keeping with the MCA.
While the research found numerous examples of good practice involving people with learning disabilities, including taking a person’s ability to communicate into account and where necessary using communication aids, such as sign language Makaton, to ensure people were fully able to participate in the process, it also uncovered some concerns with the way it is sometimes used.
“There were misunderstandings from some respondents about the principles of the MCA and when they should do an assessment for capacity and on what grounds they should do one,” says Toby Williamson, head of development and later life at the MHF, who was one of the researchers on the project.
The research found that in 17% of cases staff used a person’s impairment, diagnosis, behaviour or poor decision making as the main reason for deciding on a lack of capacity. “The Act says that those are not reasons for deciding someone lacks capacity,” Williamson notes. “You might take those into account, but the assessment of capacity must be made primarily on a person’s ability to make a particular decision at a particular time.
“Those findings reinforce evidence and research elsewhere that there is still a lack of understanding sometimes about how the principles should be used either to support someone to make a decision or how they feed in deciding that an assessment for capacity may be necessary.”
In terms of people with learning disabilities specifically, it seemed that they tended to fall into two groups, Williamson adds; people with less severe learning disabilities who were being supported well to make decisions themselves, and those with profound or severe learning disabilities who were sometimes assumed to lack capacity because of the severity of their disability.
“The Act makes it quite clear that just because someone has a disability that alone is not sufficient grounds to assume that someone lacks capacity, a capacity test still has to be done. We should assume people do have capacity and find ways in which people can be supported to make a decision, even if they have difficulty understanding. The research showed that in some cases that was not happening and people were not being given the opportunity to make the decision themselves.”
Dr Theresa Joyce, consultant clinical psychologist and mental capacity clinical lead at the South London and Maudsley NHS Foundation Trust, agrees that there are still misunderstandings about the use of the MCA, but that this is declining as it becomes more established.
“There is still some way to go before people fully understand it or think about it in all the situations that they should, but there is more awareness now about it as a piece of law than there was a couple of years ago. People are using it more,” she says.
Joyce adds that the MCA has had some positive effects, such as making professionals think much more clearly and carefully about the decisions they make about whether someone can make decisions for themselves.
“The MCA does help you when you’re thinking through the pros and cons of a case and whether a decision is in the person’s best interests or not. When used properly it can be really helpful.
“Also, the Act requires you to document and justify your decision about whether the person has capacity or not and if they don’t, why you think it is in their best interests to follow that particular course of action. It is really helpful because it makes people very thoughtful and careful about what they decide and what they say.”
But while there are positive effects, Joyce stresses that more training is necessary to ensure that all professionals – and the people they work with – experienced the benefits of the MCA.
“Within every organisation there should be someone who really understands the MCA and is available to help people think things through. I think training is really important with a focus on real situations because once you have thought it through for a couple of situations it helps you think about it for the vast majority of others.”
Steve Hardy, education and training lead at the Estia Centre, South London and Maudsley NHS Foundation Trust, agrees that more training is needed. “There has been a lot of training going on but we still find some professionals that are not only not aware of some of the finer points of the act, but misunderstand it and apply it sometimes in the wrong way,” he says.
For example, while some professionals appear to understand the principles of the MCA and such like, when it comes to assessing capacity, some misunderstand or misinterpret it, Hardy says.
“Assessing someone’s capacity is not like an exam, it is having a conversation with an individual after you’ve given them the right support and information about the decision to be made. It is having a conversation and from that drawing out whether they’ve understood the information given to them, whether they’ve remembered it and, importantly for people with learning disabilities, that they’ve used it as well.
“We find sometimes that people don’t understand how they do that, and how they ask the questions. That’s a big thing we’ve been pushing in our training.”
For example, Hardy uses a case study in his training sessions concerning an individual being assessed to have a dental intervention. This individual is in pain and one of the common questions asked in the role play of the person playing the individual with learning disabilities is ‘do you want the pain to go away?’ “I imagine nearly everyone you ask would say ‘yes’; it is a leading question,” Hardy explains. “You want the person to tell you that they want the pain to go away but the professional needs to ask open-ended questions, rather than leading questions like that.”
While training is important, Hardy adds that the wealth of resources that are available on the internet, such as Mencap’s recently published Mental Capacity Act: Resources for families and carers, are also useful for professionals to gain more of a grasp of the MCA.
Lucy Bonnerjea, who is part of the mental capacity policy and implementation team at the Department of Health, agrees that resources such as those produced by Mencap are important in the learning process, and not just for professionals. “We want family members to read the new Mencap resource pack for family carers; we want people who have learning disabilities to demand of professionals the right to be helped to make their own decisions, wherever possible.”
Alongside this, professionals need to talk about the implications and application of the MCA more. “We need to discuss what it means for all adults to have the right to make unwise decisions. The right to make mistakes. The right to spend their money on unwise things sometimes and the right to learn from mistakes and from their unwise decisions. People can’t learn if all decisions are made for them and if all their money is managed by other people. People need opportunities to get it wrong first and then get it right later.
“We need to talk to each other about what the MCA means when it says we need to look for ‘less restrictive options’ in everything. If people with learning disabilities decide they want to learn kite surfing or sailing; if they want to be supported to climb the Alps or see the wall of China; if they want help fulfilling their wishes and dreams, the MCA challenges us as family carers or professionals to support their wishes and decisions, wherever possible.”
Learning disability perspective
Simon Cramp is a fellow of the Centre for Welfare Reform and a co-founder of disability support and advice provider self direct. He was also one of only four people to appear in front of a joint parliamentary committee and was proud to input into the policy framework to help improve the Mental Capacity Act 2005. He believes the MCA has also had some benefits in safeguarding people with learning disabilities. “The 11 people who have recently pleaded guilty to abuse at Winterbourne View were all charged with offences under the Mental Capacity Act, so in that regard it has done its job.”
For more information:
Mencap’s Mental Capacity Act: resources for families and carers can be downloaded from: www.mencap.org.uk/all-about-learning-disability/health/mental-capacity-act
The Mental Health Foundation’s Making Best Interest Decisions: People and processes can be downloaded from: www.mentalhealth.org.uk/publications/bids-report/