The NHS considers my son to be an adult when he can’t and doesn’t want to make decisions about his healthcare
I have four children. Their current ages are 16, 14, 11 and eight. In the eyes of the law, my eldest child is in a grey zone, hovering between adolescence and adulthood. I have recently discovered that the years between 16 and 18 mean different things depending on what you are looking at.
When Theo turned 16, he proudly reeled off the list of all the things he could now do, such as ride a moped, buy a lottery ticket, drink alcohol if it is with a meal and fly a glider. That was all interesting, but what about the other stuff – the stuff we really didn’t think about until it started to impact on his life?
Theo is now considered to be an adult by the National Health Service. This means that he is treated in adult services, is expected to make his own decisions on his health care and does not need to have his parents involved in these matters. This is fine if you are a very mature, sensible 16-year-old who can make doctor’s appointments, conduct discussions about your health, get yourself to hospital appointments and make decisions about treatment plans.
But what if you are a 16-year-old with high functioning autism and an ever worsening problem with allergies that is seriously affecting your quality of life? What if the fact that you have autism means that it’s hard for you to differentiate whether you are feeling ill or depressed or angry or tired? What if you can’t recognise the onset of symptoms because you are just not programmed to?
This is the boy I found getting dressed in his school uniform to go to school with a 40 degree temperature and suffering from swine flu. This is the boy who frequently asks, “did I eat today?” because he just does not have the hunger cues we have.
I had a call yesterday afternoon asking me to give a message to Mr Theo Nimmo – “could he call our GP practice please”. When we go to the GP, though, Theo freezes; he can’t make eye contact and always asks me to speak on his behalf. If the GP asks him how he is feeling, he will normally reply with “fine” or “eergh” – which is not great when you are trying to get to the bottom of allergy triggers and why he has developed asthma, severe skin rashes and what appear to be food sensitivities. All medical correspondence is now addressed to him and he is expected to manage his own appointments and discuss his own results. But this is where it all unravels; Theo is still in compulsory full-time education, in a school which does not allow the boys to have mobile phones. He cares more about the latest AMA on Reddit than whether his allergies will respond better to an elimination diet or antihistamines.
So what do you do when one part of your child’s life is still very much under your care – for example, if he is unwell in school, I have to go and get him as he is not allowed to travel home on his own – and another part of his life is completely and utterly removed from your parental influence?
When I thought about the impact of transition, I was more concerned with Theo’s move from full-time education into higher education and how he would manage moving to a less structured academic framework. I did not really consider health needs; I just assumed that I would still be responsible for his health care until he was 18 and leaving school – but apparently not.
There were no transition discussions, careful preparations or plans for what Theo wanted and what he needed. Like many other young people who are high functioning and physically able, he moved from being a child to being an adult on the day of his birthday. I know things will be different with my daughter Daisy. She has Costello syndrome and will not be able to live independently or manage her own care; she will always be totally dependent on me. For cases such as Theo’s, though, surely there should be a gradual easing from dependence to independence. It’s probably true of most teenagers, but with a lifelong neurodevelopmental condition, maybe the line is not black and white, as the NHS expects.
So what do you do in this case? Well, thank goodness (once again) for charities and the voluntary sector; a call to a leading autism charity helped us formulate a plan with Theo aimed at helping to manage a smoother transition for his healthcare needs over the next couple of years.
We have sat down with Theo and discussed what he wants, which is to get his allergies sorted. What he doesn’t want is to have to deal with the people who will help sort them out, to organise the appointments or to have to speak to doctors – not yet at least, but maybe in a few years. At the moment, just getting his head around his A level studies and dealing with day-to-day life is enough for Theo. So he has agreed that it would be a good idea if we draw up power of attorney for his health and social care. This would enable him to give legal permission to us, his parents, to continue to advocate and act on his behalf on decisions relating to his health care until such time as he feels he would like to take this on, at which point the document can be revoked.
We think that a good time for this will probably be when Theo leaves school and, hopefully, goes on to university. This gives us two years to help him manage the transition.
As I write this, I can hear people shouting “but what about his rights to confidentiality?” and I understand this absolutely; if this were one of my other children, I would want to respect their right to visit our doctor and discuss things without us knowing. They will not need a power of attorney for us to retain a right to know, but Theo has Asperger’s. He can present as a bright, capable young man but asking him to have a conversation about his health or proactively seek out help from a stranger would be completely alien to him; these are skills for life that he needs to learn and practise before being thrown in at the deep end of NHS services.
We will always be there for all of our children, regardless of their ability, but there’s a fine line between being an interfering parent and an advocate. Daisy will need us to be her advocate 100 per cent of the time for as long as she is here. Theo’s journey to full independence will take a little longer than his other siblings and our role is to provide that safety net for him until he is ready to run free.
Stephanie Nimmo is mother to four children, one diagnosed with Costello syndrome and another with Asperger’s syndrome. She blogs about her parenting experiences at: