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Down’s Syndrome: Do Not Resuscitate Orders

Volume 767: debated on Tuesday 15 December 2015


Asked by

To ask Her Majesty’s Government what assessment they have made of East Kent Hospitals University NHS Trust’s decision to list Down’s syndrome as a reason to issue a Do Not Resuscitate order to a patient.

The department expects trusts to have local policies on resuscitation, based on expert professional guidance. Such guidance has been published jointly by the British Medical Association, the Resuscitation Council and the Royal College of Nursing. All resuscitation decisions must be tailored to the individual circumstances of the patient. For patients who lack capacity, the Mental Capacity Act requires a decision in their best interests, taking account of their known wishes, beliefs and values.

My Lords, in considering Mencap’s estimate that 1,200 people with learning difficulties die needlessly in NHS care every year, will the Minister look at the inspiring work of the Blue Apple Theatre company, which includes actors with Down’s syndrome performing either “Hamlet” or their play “Living Without Fear”, which was staged in Mr Speaker’s House, and then consider how best we can counter a slide into eugenics, discrimination and non-resuscitation orders, as in the case of Andrew Waters, and look for ways to promote positive and life-affirming attitudes towards people with Down’s syndrome?

My Lords, perhaps I could address first the particular issue of Andrew Waters. The doctor who signed the DNR order was a junior doctor who made a mistake. It was a misjudgement, he apologised for that mistake, and he has learnt from it by using his experience to teach other doctors how to deal with similar issues. It is important to make that statement first—the reaction of that junior doctor was the right one, having made that mistake. The noble Lord mentioned the Blue Apple Theatre company. He was kind enough to send me a copy of some of the work that it does, which illustrates that people with Down’s syndrome can have a very full, useful, good and happy life, and their lives should be valued just as highly as the life of any other person.

My Lords, does the Minister know how widespread such discrimination is against people with learning difficulties? What reassurance can he give to parents such as those I met recently in the House of Commons Dining Room, who were terrified to allow their disabled son to go into hospital because they knew they were going to be put under pressure to sign a DNR notice? They were also afraid that, even if they refused but were not at his bedside 24 hours a day, it would happen anyway.

My Lords, the noble Baroness has just made a truly shocking statement. If indeed this practice was systemic and widespread, it would be a matter of huge concern and I think all of us in this House would be appalled by it. I have no evidence that this is a systemic problem, but it is absolutely the case that this group of very vulnerable people have been let down not just by doctors and clinicians but actually by all of us—the whole of society, for ever. The report produced three weeks ago called Building the Right Support recognised that we have let down this group for decades, and I hope that over the next five years we can start to make amends.

My Lords, in his original Answer the Minister referred to the Mental Capacity Act, which is widely admired as legislation that is on the whole benign. However, he will be aware that a Select Committee of your Lordships’ House met last year and produced a report that pointed out that the implementation of the Act is not always as effective as it should be, which has a lot to do with the way health professionals understand their duty under the Act in situations such as this. What progress is being made in improving the training of health professionals under the Act?

My Lords, the noble Baroness will be aware that the noble Baroness, Lady Finlay, has become chairman of the National Mental Capacity Forum, which was established in September. She will be looking at all these issues and reporting back in March next year. I entirely agree with the noble Baroness, Lady McIntosh, that the principles in the Act are generally accepted as being the right ones, but their application has not been as consistent as we would like.

My Lords, from these Benches we affirm that those with Down’s syndrome and other learning disabilities and handicaps are fully human and fully made in the image of God. We believe that the chief mark of a civilised society is the way it cares for the most vulnerable. Can the Government, through the Minister, indicate what they can do to change the culture, training and attitudes within the NHS—and perhaps within society more widely—to make sure that mistakes such as the one made by this junior doctor are not made again?

My Lords, the right reverend Prelate makes a number of very important points. This is a society issue as much as a medical issue. Before coming into the Chamber today I discussed with the noble Baroness, Lady Hollins, the importance of teaching students at medical school how to value people with learning difficulties, and the important role that people with learning disabilities might play by going to medical schools and directly telling medical students about their lives and concerns.

The assumption that pregnant women who are expecting a baby with Down’s syndrome will abort that child affects public and medical attitudes. As one woman with Down’s syndrome put it when speaking at a conference on prenatal diagnosis, “You want to kill us”, which is a hard perspective for an adult with Down’s syndrome to hear. I am grateful to the Minister for picking up the point that medical nursing students need to learn from people with learning disabilities, so that their attitudes change. That familiarity with and being comfortable with people with learning disabilities will change things. Will the noble Lord commit to asking the General Medical Council, the Nursing and Midwifery Council and the Medical Schools Council to make this a priority and to teach not just knowledge and skills but practical attitudes to people with learning disabilities?

My Lords, the noble Baroness makes a profound point—that medical education and training is not just about passing exams and the technicalities of medicine but about attitudes and how you work and deal with people, particularly people such as those who suffer from learning difficulties. I will certainly do what I can to encourage medical schools and nursing schools to adopt the noble Baroness’s suggestion.