Mental Capacity Act 2005 (Select Committee Report)

Baroness Hollins Excerpts

Tuesday 10th March 2015 Lords Chamber

[Baroness Hollins (CB)]

My Lords, I refer to my interests in the register. As a member of the committee I should like to add my thanks to my noble and learned friend Lord Hardie for his chairmanship and to the staff who supported us. The committee’s report hoped to raise the profile of the Mental Capacity Act, to stimulate further discussion and, most importantly, to encourage action.

One of the fundamental problems with the Act, however, is the way that it brings together DoLS with some very important empowering measures. In the Government’s response and a number of other reports—including the Green Paper consultation published last Friday, No Voice Unheard, No Right Ignored, which is about people with learning disabilities, autism and mental health conditions—these two aspects of the Mental Capacity Act confuse everybody. It is difficult to discuss them both in the same debate. For that reason, I welcome the debate on DoLS arranged by my noble friend Lady Finlay for next Monday. I will therefore say no more about DoLS today.

The Government commissioned a Mental Capacity Act directory, which was launched in February by the Social Care Institute for Excellence. It endeavoured to bring together some of the resources relating to the Mental Capacity Act in one place, sorted by different professional groups. However, what about the people most affected by the Mental Capacity Act: the people who lack or have fluctuating capacity? What resources are there for them? I only found one easy-read document suitable for people with limited literacy. There may have been more, but this one was found by navigating a very difficult process of links. The document provided an explanation of their rights under the Act. It was not a resource to facilitate decision-making. The examples given were mainly about very straightforward daily living activities, with very little reference to health-related decisions. Given concerns about the lack of choices for, and the lack of involvement of, families in hospitals such as Winterbourne View, this seems quite extraordinary. As a response to recommendation 12, considering the specific information needs of the different groups affected by the Mental Capacity Act, the directory needs much more work. Surely the people most affected by the Act are vulnerable adults, such as those with learning disabilities. So far, the directory further reinforces an unintended message, I am sure, that the Mental Capacity Act is a professional framework rather than an empowering piece of legislation.

Increased activity around the Act means little until it translates into change for individuals and families on the ground. Charitable organisations continue to hear from families about organisational failures to understand the Act and apply it correctly. The lack of an independent oversight body will allow such inadequacies to be perpetuated. Charities such as the Royal Mencap Society and the Challenging Behaviour Foundation have highlighted that, a year on from the Select Committee’s report, there is little evidence that things have changed from the perspective of individuals and families. Frustratingly, families continue to report being excluded from best interest decisions.

I will illustrate my point with two case studies. The first is the case of Angela. She is the mother of two young adults, both with learning disabilities and autism. She has become so frustrated by being left out of decision-making by professionals from children’s services and adult services that she feels that her only way of ensuring her involvement is by becoming their health and welfare deputy. This requires an application to the Court of Protection for permission, first of all, to ensure that she qualifies. Then she has to submit a full application, including a capacity assessment of her children by a medical professional. A court hearing may be required to make the final decision, and all this takes time. The application incurs a fee of up to £1,000 per child, with an annual subscription of between £35 and £320. There is no guarantee that she will be appointed deputy. Some carers could not afford even to begin this process. She told Mencap:

“I love my children and know them better than anyone else and yet professionals do not always involve me in decisions. This causes me real anxiety, as they have complex health needs and if their needs are not understood and met properly, this could have serious consequences. I have been told that professionals should involve me—that under the Mental Capacity Act they must—but I have no confidence that this will happen unless I am an appointed deputy”.

The second example is about Botton Village. It is an intentional community where, until recently, all residents and co-workers lived alongside each other as equals, sharing a home. It is said that:

“Residents feel needed, valued and respected and it shows”.

The umbrella term used by social services would be “shared lives”. However, the model is under threat, with a division being made between those who are considered carers or staff and those being cared for. It appears that financial decisions are driving change without the inclusion of residents in best interest decisions about the future direction of their lives, with many relatives of people who live there being gravely concerned that this loving and inclusive community will be lost, without their individual voices being listened to.

It appears that, after an inspection, Camphill Village Trust, which owns this community, made the decision to change it from a community or family-based organisation to a commercial/institutional model, which the families have perceived as being to the detriment of the inhabitants of Botton Village. In the words of the Welfare Reform Trust, “When did care become a business?”.

The intentions of the Mental Capacity Act are not to create an additional layer of bureaucracy and regulation that takes away people’s rights; it is supposed to enhance their rights. I draw particular attention to the more than 1 million people in England living with a learning disability. This is nearly double the number living with dementia, and yet we often think about people with learning disabilities as being a very small group. The point is that a learning disability, by its very nature, is not time limited and will be present their whole lives.

It seems to me that a large problem with the failure to implement the Act is an attitudinal one—a paternalistic attitude which has not passed despite the decade since the Act was passed. Most of these people will lack capacity to make certain decisions at some point in their lives, which may well include decisions about seeking healthcare. We know that premature mortality is commonplace and that the attitudes and skills of healthcare staff are often at fault. GPs are a particular focus for embedded training as they are usually at the forefront of health surveillance and of accessing further investigation for their patients. They are also more likely to know the family and more willing to ask their advice, for example on how best to support their relative to understand decisions about them, as well as to understand that they need to inform their patient when they are going to consult other family members.

I am encouraged by the response of the Royal College of General Practitioners to the report on trying to embed the Mental Capacity Act in the curriculum for GPs and in the college’s media communications. It would be very helpful if the Minister could comment on how the Government plan to monitor the progress of organisations such as the RCGP, the GMC and NHS England in achieving some of the goals set out in the committee’s report and in the Government’s response.

I end by reminding noble Lords that capacity affects many aspects of decision-making. With pending elections, it is perhaps particularly pertinent to consider the decision to vote. A survey carried out by Mencap at the beginning of this year of 553 people with a learning disability found that 17% had been turned away from a polling station. Again, one cause is almost certainly attitudinal, and the charity continues to hear accounts of those working within electoral services and, indeed, of candidates themselves making assumptions about people’s capacity to vote.

The Learning Disability Alliance has arranged a citizens’ jury on 2 April this year and invited representatives from each of the major political parties to speak on policy issues that may affect people with learning disabilities in order to enable them and their families to make informed voting choices, recognising that there is nothing that says you have to have any particular capacity to vote.