At the start of his career, Andrew Holman was astounded at how people who lacked capacity were left in legal limbo. Forty years later, he is still waiting for things to move on. Will the House of Lords’ report focus minds on the need to sharpen up the Act?
Forty years ago I couldn’t believe it when I went with someone to hospital as a carer and they asked me to sign consent papers as they were unable to sign for themselves. The paper had to be filled in because it was a procedure so there seemed nothing else for it.
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When I looked into the matter I was astounded to discover that when someone couldn’t make a decision for themselves, no one else could legally make it for them – they were in effect left in a legal limbo. The hospital papers were, of course, utterly meaningless but nothing would happen without a signature – whatever the status of it!
Experimentation
In the 1990s I was involved in the lengthy consultation processes on draft ideas from the Law Society and, later, the Law Commission. Penny Letts from the Society and I wrote numerous articles for Community Living on the subject and a quick search through my notes from 1995 highlighted my concerns. These included:
- bioethics, with regard to experimentation on ‘those who could not consent’
- the place of Direct Payments for those seen as unable to consent, and
- the disappearance of advocacy from the Law Commission report 231 on Mental Incapacity.
In 2005 the Mental Capacity Act was passed and, although not perfect was, I hoped, far better than the void we had had before.
Few disagreed with the overall objectives of the Act which I summed up in the EasyRead version as:
- we should always think someone can make their own decisions unless it has been shown they cannot
- people should have support to make their own decisions
- people who might not be able to make their own decisions have rights
- people have a right to make decisions that others might think are not very sensible
- if a person cannot make a decision for themselves, the people making it for them have to think about what’s best for the person
- a person’s wishes and feelings should be thought about in any decisions made for them
- people should be kept safe if they can’t make a decision.
But the proof, as they say, is in the pudding and after seven years of operation the House of Lords decided to look at how well it was working.
The Lords’ Committee consulted far and wide and received a huge amount of evidence from both people and organisations. They even visited a couple of self advocacy groups for good measure. What they found exceptional was the consistency of reporting the same problems.
This law was meant to change people’s lives yet, after 20 years of work, evidence was reporting:
- lots of people and services do not follow the Act
- many services think people can’t make decisions when they can
- they do not check to see if someone can make a decision·
- the checks that are done are not very good
- people do not get support to make their own decisions
- health services still think they know best for people they think cannot make their own decisions
- care services want to be safe, they do not let people take risks or do things differently
- sometimes services say people can make decisions as an excuse to leave them without support or with bad care
- some professionals don’t know about the MCA or how to work in this way
- the Deprivation of Liberty Safeguards (DoLS) are not working at all well
- too many people don’t know enough about the MCA.
The Committee makes 39 recommendations, the most prominent being the formation of a new independent body responsible for the oversight of implementation.
The MCA has lacked teeth and needs a central body that can promote the Act, its principles and ways of working, have a clear oversight of implementation and address problems as they occur.
Major flaw
The other major flaw is DoLS. This was added on after the controversies of people being locked up for treatment when they couldn’t consent and others close to them didn’t agree. The Committee insists a major rewrite is required. I couldn’t agree more.
An area that, surprisingly, has been given little attention is the function of commissioners. An example of anecdotal evidence was the commissioner who asked a new support provider in south London if the support mentioned, to aid communication for people with severe learning disabilities, was optional because, if it was, he would not buy it. Such an action would clearly be against everything the MCA stands for.
I have come to the conclusion that commissioners are at the heart of a lot of what has been going wrong. They have a responsibility for the services they buy yet consistently let people down. It is they who pay for people to go to units like Winterbourne View and who have repeated their mistakes ad infinitum. Of course, others at government level are also responsible but devolution of responsibilities to local levels meant inactivity.
Disarray
The CQC, who should have flagged this up, were in disarray at the time. But the CQC did not, and still does not, have a responsibility to check commissioners. Commissioners are left to their own devices, although a system of ‘peer support’ is now in place – a case of the blind leading the blind.
Apart from this omission I feel the committee has done a good job. They flag up the importance of information for people and better access to better advocates. They are clear the Court of Protection needs more staff. I suspect they have been drastically cut in the recent purges and need their own website but this would be against government policy to have just one website for everything, no matter how complicated.
Another of the financial cuts they are critical of is the reduction in legal aid for people unable to speak up in court.
There have been several recently enacted laws which are a response to public pressure rather than need. It is easier for government to get people off their backs and say they will legislate to put a problem right rather than help people use existing laws with increased support and legal aid. An example is the MCA law on the protection of vulnerable people. There have been remarkably few people charged with this offence – even the staff at Winterbourne View were charged with other offences. We should ensure this law is keeping people safe and, if not, change it for something that will – or scrap it altogether.
Gather dust?
The work of the Lords Committee is finished and the fear is their report could gather dust, especially in an election year when the focus will certainly not be on the votes or rights of people unable to make a decision themselves.
Fortunately there is a government group, the MCA Steering Group, that may be able to follow up the issues raised and make sure something is done to move things on from the nonsense I saw when I started my career that seems to have remained the same now it’s coming towards the end!
Andrew Holman is Director of Inspired Services
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