Last week there was a frightening news story in the headlines that I kept hearing as I was driving up and down the country : that a man with Downs Syndrome had a Do Not Resuscitate notice that he had agreed with NHS staff, without consulting his family as I understand it. His family were claiming that he did not have the understanding or capacity to make such a huge decision and of course, it lead me to thinking about the implications of this and I am reminded this morning as today, ITV news is covering elderly patients are being put on the ‘end of life’ care plan again without consulting their families. The news is complaining that families are not told about their plans, but surely they should be asking and not telling?
Joshua does not have sufficient language and evident learning difficulties, and so I am pretty confident that in a hospital situation, even once he is adult, that we would always be consulted. But the same might not be true for some of the more able young people who are at school with Joshua, and that is a terrifying prospect. You would need to take time to really listen to some of the pupils to realise that they have not got full capacity, but a quick snap shot consultation might afford them more ability than they have in reality.
I recall when Joshua was in hospital for his brain surgery, a member of staff told me that it was ‘lucky’ that he was having it when he was under 18, as I was allowed to stay by his bedside, whereas when he is adult, she implied that I would be banned from the ward overnight as adult wards do not have those facilities. There is no way that I would leave an adult Joshua, who according to the same hospital, has a cognitive ability of a 12-18 month old, alone on a ward to undergo a frightening and painful surgical procedure! Joshua would sleep on a ward and would not create behavioural issues, but many of his peers who I know at school, would really kick off in the strange surroundings of a hospital ward, with unfamiliar nursing team. I can visualise the staff being tested to the limit, as patients with special needs ran around like headless chickens. I recall what Dad’s dementia ward was like last year and although the staffing ratio is higher, that would not be the right environment for young people with learning difficulties.
I will fight that particular battle, if and when it becomes necessary. But these news headlines do not encourage me to feel confident about the future for my adult Joshua in a hospital situation.