Andrew Waters loved to dance, and swim. He took part in drama groups. He was loved by his family and friends. At 51, Andrew, like many people with Down Syndrome, and without it, he had the onset of early dementia. So he went in for routine care to East Kent Hospitals Trust for help with symptoms related to his dementia. The junior doctor decided he should not be resuscitated if he developed heart or breathing problems. The Do Not Resucitate (DNR) order listed Down’s Syndrome and his learning difficulties among the reasons. Reasons which should have immediately alerted any auxiliary, nurse or doctor to get consent from Andrew’s guardian or power of attorney. The Adults with Mental Incapacity Act is very clear on this. So too is the Equality Act which guards disability as a protected characteristic. Ignorance of these Acts has no defence. The junior doctor failed to see the obvious incompatibility between Andrew’s mental state and lack of action to uphold Andrew’s basic legal and human rights, that is, to be represented.
Lynn Murray, from Saving Down Syndrome, remembers her horror when her daughter Rachel was in her arms, content and smiling, at eight months and the Registrar stated “They (People with Down Syndrome) always look happy, even at the clinics, but I wonder if that is just their ignorance.” Lynn finds the Andrew Waters situation plain scary “we always hear that the answer is ‘more education’, yet this Junior Doctor has been trained and educated for years and has made this hurtful and potentially fatal error. How are medical staff rising to this level of authority and remaining ignorant? Why did no other member of staff question the need for the DNR notice and the unacceptable assumption of Andrew’s consent?”
A week on from this story, which outraged many, many people, the House of Lords debated this at the start of their session on Tuesday 17 December (http://parliamentlive.tv/event/index/640a18f6-021c-4a8f-8391-80c8e03c6096?in=15:00:04) Lord Alton stressed that the work of Blue Apple Theatre company amongst others clearly shows what great lives people often live who have Down Syndrome and that to keep misrepresenting this is unacceptable. Baroness Evans stated that the good standard of the Adults with Mental Incapacity Act is one thing, the implementation of it is another. We need medical staff to spend time with people and their families who have these conditions and gain practical experience. Knowledge alone is simply not enough. We are failing this group of people.
Andrew’s brother Michael and the rest of the family were deeply upset by the DNR order. Andrew died two years later unrelated to the DNR notice. However, the family have consented now to this becoming public knowledge in the hope this will mean another family is spared this. The family are not seeking any financial compensation. They were at the hospital and totally involved in Andrew’s care and yet only found out about the DNR notice when they came across a folded-up piece of paper in his bag after discharge. There was nothing wrong with Andrew’s health at the time which would have had an effect on resuscitation. The Waters family have welcomed the trust’s admission that they breached Andrew’s human rights but they have taken a long time to do this causing further upset.
Lynn Murray’s daughter Rachel is now a thriving teenager attending the same high school her elder siblings went to. She is a true joy to people she meets and a trailblazer for ensuring inclusive education is just that, and not some trendy jargon. Lynn, however, is worried about Rachel’s future “it looks more and more likely, considering recent cases of NHS disability abuse, that the NHS may have to look at how they comply with the Equality act in the difficult climate where discriminatory judgement is made following a DS diagnosis. This act should simply be affirming NHS practice but it may, in fact, be exposing the conflicting culture where prenatal DS screening leads to termination”
Misunderstanding of Down Syndrome, as Andrew’s case highlights, continues despite the fact that we should be more enlightened. Incredible advances in lifestyle and longevity for those with the condition abound and our society is entrenched in an equality narrative. So why does this misunderstanding keep occurring? One reason is because we are killing Down Syndrome babies before they are born. Over 90% of babies with Down Syndrome are aborted. These babies are wanted babies and yet eugenic-type (or watered-down eugenic) practices selectively attempt to eliminate them from our so-called egalitarian society.
Andrew Waters must not just become another statistic. We must write to MPs to challenge the inequality before and after birth for people with Down Syndrome and other conditions society chooses to ignore, discriminate against and eradicate.