People with Learning Disabilities

Lord Patel of Bradford Excerpts

Thursday 12th June 2014 Lords Chamber

[Lord Patel of Bradford (Lab)]

My Lords, I, too, add my thanks to the noble Baroness, Lady Hollins, for having secured this debate on such an essential issue: one that goes to the heart of the kind of society we should be aspiring to be, one that cares for and protects the most vulnerable of its members. As we have already heard from the noble Baroness, Lady Hollins, and others, we are clearly not meeting this aspiration. We are failing to protect those who deserve our constant and vigilant care and protection. In fact, we should all be truly shocked by the stark findings of the confidential inquiry—that more than a third of deaths of people with a learning disability could have been prevented if they had received better healthcare.

I find that completely unacceptable. What is even more unacceptable is that some of the reasons for those shocking figures are that people lacked information about their health—information that they could understand—or the provision of professionals and health advocates to help to explain such information. Yet as my noble friend Lady Andrews said, we have legislation to ensure that this happens. The Mental Capacity Act 2005 set out a comprehensive statutory framework to define mental capacity, help those lacking it to make their own decisions where they can and enable sound decisions to be made for them when they cannot. The Act is there to empower, protect and support people who lack mental capacity and to ensure that professionals, families and friends who care for people who lack it understand more fully and clearly their legal rights and responsibilities. So what has gone wrong?

Implementation of the Mental Capacity Act is clearly failing; it is certainly failing for many people with a learning disability. This was clearly highlighted by the confidential inquiry but also by the post-legislative House of Lords Select Committee that I was a member of, along with the noble Baroness, Lady Hollins, and my noble friend Lady Andrews. The committee heard a huge amount of written and oral evidence from experts, professionals, service users and their families. I shall read just two sentences about the key finding of the committee’s report. It stated:

“Vulnerable adults are being failed by the Act designed to protect and empower them. Social workers, healthcare professionals and others involved in the care of vulnerable adults are not aware of the Mental Capacity Act, and are failing to implement it”.

The committee’s findings are fairly clear.

I am pleased that the Government put out a joint statement earlier this week from the Department of Health and the Ministry of Justice. It said that they,

“share the Committee’s concern at the low levels of awareness and understanding of the Act. Too many people who may lack capacity may be missing out on the legal rights that the MCA gives them. This is not tolerable and we are determined to put this right”.

While I of course welcome this acknowledgement, quite frankly it falls far short of my expectations and, I am sure, those of your Lordships. In the face of the enormity of the problem, we must have clear actions to swiftly ensure that the protections of the Act work as they were intended to: empowering patients to make choices about their healthcare and protecting the rights of those who lack capacity by ensuring that best interests decisions are made.

Some of the practices highlighted by the confidential inquiry are simply illegal and there are numerous instances of the Mental Capacity Act being misapplied or not used at all, including the failure to appoint independent mental capacity advocates where there are no family members present to ensure that the wishes of individuals are understood and respected. I would like to highlight the consequences of what this means in reality by briefly reading a case study from Mencap’s Death by Indifference report that clearly shows how grave the individual circumstances can be when staff fail to understand the Act. I take this opportunity to thank Mencap, particularly Rob Holland and his team, for its expert advice and briefing on this issue.

The case study is about a woman called Anne Clifford, who died of pneumonia on 20 July 2010, aged 53. She,

“had Down’s syndrome and a severe learning disability. Although she had no verbal communication, her sisters, Monica and Mary, describe her as a ‘feisty character who was able to show what she liked and disliked’ … When Anne was first admitted to the Mayday Hospital”,

in Croydon,

“she was put in the intensive care unit … and placed on life support as she was having difficulty breathing. She was diagnosed with pneumonia. From the moment of Anne’s admission, Monica contacted the hospital every day to enquire about the treatment her sister was receiving. She also made it absolutely clear to staff that she and her sister Mary were to be kept fully informed about Anne’s progress”,

which was their right under the Mental Capacity Act.

The report continues:

“When Anne was eventually able to breathe unassisted, she was placed on a general ward. Monica and Mary viewed this as a very positive step and began to believe that Anne could recover. However, during one of Monica’s regular phone calls to the ward, she was told that Anne’s pneumonia appeared to be returning. Monica then naturally enquired if Anne would be returned to the ICU and put on life support. It was then that she learned that Anne’s notes stated that she was not to be returned to the high dependency unit and that she would not be resuscitated. This was the first that the family knew of this. Alarmed, Monica began to seek advice and, with the assistance of the adult safeguarding team, a best interest meeting was called. But the consultant responsible … informed Monica that he had agreement from other doctors”,

on the “do not resuscitate” decision. The Mental Capacity Act states that Anne’s family should have been consulted before the best interests decision was made. This did not happen, resulting in the worst possible consequences for Anne and her family.

Anne is not alone in having been failed by health professionals who did not understand the Mental Capacity Act. There are other examples of “do not resuscitate” orders being used in situations where mental capacity has not been fully assessed.

It is hard to believe that seven years have passed since the Mental Capacity Act came into force. While the expectation, rightly, is that all health and social care professionals should have knowledge and understanding of the Act, evidence has consistently shown this not to be the case, and our committee found that staff continue to be ill equipped with knowledge about the Act. Even with the development of resources and materials for professionals, far too few understand the Act well enough to confidently and successfully ensure that it is implemented correctly.

Knowledge and understanding of the Act must be available for patients, families and staff to ensure that it is applied properly. As such, the confidential inquiry’s suggestion that a 24-hour Mental Capacity Act phone line, staffed by expert advisers in all matters relating to the Act, must be established with some urgency, and I hope that the Minister can give me some good news on that front. In addition, Mental Capacity Act training should be mandatory core training, and minimum training standards are desperately needed; my noble friend Lady Andrews spelt out why. I hope that the Minister can reassure us that this is high on the Government’s agenda and we can see some positive moves very shortly.