Mental Capacity Act 2005: post-legislative scrutiny - Select Committee on the Mental Capacity Act 2005 Contents


Note by the Clerk and Policy Analyst

Overview of the Visit

A delegation of the Committee met with a group of adults with learning disabilities convened by Mencap Hammersmith and Fulham branch on Thursday 28 November 2013. Among the group were members of Safety Net People First, a self advocacy group of adults with learning disabilities. Some participants were accompanied by carers or support workers to assist their communication. The members of the delegation were Lord Hardie (Chairman), Lord Faulks and Baroness Barker. They were accompanied by the Policy Analyst and the Clerk.

The purpose of the visit was to provide members with the opportunity to speak directly with adults with learning disabilities about their experiences of decision-making. It was held in the Council Chamber of Hammersmith and Fulham Town Hall. We are grateful to Hammersmith and Fulham Council for the use of their facilities.

Prior to the visit, Mencap held a preparatory meeting to ensure that participants felt able to contribute to the meeting. During the meeting with Committee members an easy-read presentation was used to help guide the discussion. The presentation can be found on our website.[565] We are grateful to the staff of Mencap Hammersmith and Fulham branch for their support in arranging and facilitating the meeting.

Following introductions, the participants split into two groups, each facilitated by a member of staff from Mencap. Subsequently there was a break during which participants were able to speak individually with committee members. The visit closed with a final plenary session and words of thanks. This note summarises the main points which were raised over the course of the discussions.

Key themes emerging from the discussions

The right to make decisions, and the right to support to make and implement decisions

Many participants reported a strong desire to make their decisions and to be supported in making and implementing them. A mother with learning disabilities shared her experience of the removal of her first child by her parents and social workers. Her parents cared for her child and her daughter grew up believing she was her sister. She was not allowed to hold her due to fears that she would drop her. She had asked for help holding her, but it was not sufficient. She felt strongly that she should have been provided with support to bring up her daughter and that had such support been available she would have been able to parent her. She reported that she now has two sons, whom she is bringing up with the support of her brothers and sisters, and she now has a relationship with her daughter.

Another participant said he liked to take holidays and was supported in order to do so. He would be shown pictures of places until he chose which one he wanted to visit. He would visit first for a couple of days and if he liked it, he would book a longer holiday. His carers would support him in doing this.

Another man reported that he liked to take holidays and had done so successfully on a number of occasions, including to Egypt and Australia, with the support of one carer whose travel he paid for. However, he wasn't always happy with the arrangements for deciding on and planning his trips. He reported that on one occasion his support workers had decided that his next holiday should be to New York and that he would need two support workers, despite the increased costs this would entail, and the fact that he had previously travelled with just one. He had not wanted to go to New York. He said that when he was there his support workers spent the whole time shopping and that he had developed blisters on his feet from being 'dragged around shops.'

Another participant described having to make 'a very hard decision' about whether or not to have an invasive treatment. She was supported in making the decision by her doctors. They explained in simple language the consequences of not having the treatment, and they gave her time to consider her decision. She consulted her mother who said it was up to her. She made her decision alone.

Not all participants were keen on making their own decisions. One woman said she did not want to make decisions alone, she preferred to have support. She said support was available from her key social worker but sometimes she was obliged to see other social workers. She would like to have support available 24/7 as she was worried about 'getting it wrong.' Another woman agreed; she liked to have her partner support her because she struggled to do things on her own.

The importance of being involved in decision-making when the person lacks capacity

Many of the participants were unhappy about not being involved, or not being sufficiently involved in decisions that affected them. The term 'behind my back' was used by several participants about decisions that had been made in their lives. Some participants were familiar with the term 'best interests.' One woman, for example, said she would like her mother and key social worker present at any best interests meeting to support her; she was concerned things would 'go wrong' if she went on her own.

One participant was unhappy following a recent move to a new property. She had appealed to the Council to move her again. They had refused. She had not been involved in the decision to move to the new property and she felt the Council were not acting in her best interests. She was challenging the decision with the help of an advocate.

Another participant reported that she wanted to stop taking her medications. She had been told 'no'. She did not feel involved in the decision.

Another woman was unhappy that her finances had been rearranged without her involvement. Her social worker was aware that she was having difficulty budgeting and had arranged for her bills to be paid directly by social services, and for her benefit money to be delivered in small amounts three times a week. Previously she had spent all her benefit money at once. She now found that she was able to budget throughout the week. She was happy with the outcome but she was unhappy not to have been consulted.

One participant had a more positive story. He had had to move care homes because his home was closing. He did not have the capacity to make the decision himself. Social workers took him to a number of possible homes until they found one that he liked. However, it still took a number of months before he was happy to move into his new home. In the meantime, he visited the home and had his photo taken there as part of a process of becoming more comfortable with the move.

One man wanted help to 'plan his life'. He wanted a person-centred plan, made with support from others involved in his care. He wanted to be at the centre of his life. This particular participant spoke to members of the Committee individually after the group discussions. He was supported during the meeting by his mother and a care worker. His communication was through a Lightwriter SL35 with voice output—a keyboard which allowed him to type out responses to questions which were then vocalised electronically. The members were told how his parents supported him to take an active part in the decisions which affected him. He was involved in choosing his activities. He had also been able to vote on three occasions in the London Mayoral elections. His parents had helped to prepare him for this decision by making scrapbooks of each of the candidates, outlining their policies and what they stood for. They had provided the information clearly and in small bursts. The process had taken three months. Additional information submitted by his parents can be found on our website.[566]

Respect for choices by adults with learning disabilities

Respect for choices made by adults with learning disabilities was a recurring theme. One participant felt very strongly that there was a need for greater respect for the right of adults with learning disabilities to have relationships. It was later reported that she was in a relationship with one of the other participants, but both had felt unable to discuss this due to the presence of her partner's carer, who disapproved of the relationship.

One man reported that he had been prevented by social services from buying gifts for the people that he lived with.

Another man gave the example of trying to book a holiday with his mother. He had been moved into residential care as a result of abuse by his mother. After his move his confidence and his relationship with his mother had improved. He decided he wanted to take her on holiday with him. Staff at the care home had supported him in understanding the decision, and he had shown he understood the cost involved by expressing this as being equivalent to '10 televisions'. Social services did not accept this and repeatedly asked the home for information to undertake a capacity assessment, rather than talking to him directly.

Experiences of discriminatory treatment

Several participants reported discriminatory, threatening or violent behaviour. One participant described a very difficult relationship with her parents, with whom she no longer lived. She reported trying to leave the family home, which felt like a prison to her, resulting in a beating with a belt. She felt she was not able to challenge the treatment she received because it involved her parents; she felt it would have been different if they had been paid carers.

One woman talked about an example of violence from a neighbour. When she reported it the police had failed to take action because they did not believe her account and they had no other witnesses.

One participant said that she responded to being sad about being treated badly by writing and singing songs about her experiences. Another said that he 'takes it out on the drums', while yet another played the keyboard.

Post script to the visit

Following the visit, the facilitators from Mencap Hammersmith and Fulham branch provided additional information from the participants about the support they receive when making decisions. The things they liked about the support they received were:

·  I am included to make decisions.

·  I get to choose what I want to do

·  My sister helps me

·  I like having help with my money

·  Have friends involved

Some things could have been done better:

·  Talk to me first about it.

·  Make sure family don't overrule me

·  Check after decisions are made that I still feel the same way.

565 withlearningdisabilities-webversion.pdf.


566 withlearningdisabilities-webversion.pdf.


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