Until the age of 16 I had lived a seemingly ‘normal’ life. I had a few peculiar things happen with my health – lots of infections I struggled to clear, lots of joint injuries and being much shorter than my percentile projections predicted (I am five foot nothing!)
It took six years to discover the cause of my illness, but before we knew the cause my family and I were told the true severity of my situation. During my first appointment with a hospital consultant I was told that my condition is life-limiting, degenerative, and I was in need of ‘Supportive Management’. After my mum (an ex-nurse) did some doctor prodding, the fateful words were spoken: Yes, that does mean palliative care.
Because I became so seriously ill at the age of 16/17, I wasn’t assigned a Transition Co-ordinator. I was, however, warned of some of the problems that might occur in adult services. For example, the fact I wouldn’t be shielded from death in the same way that I was in children’s services. This came to pass during my first adult hospital admission. I was in a four-woman bay, when the emergency bell was rung, but the curtains were not drawn around like they would be in children’s ward. The crash team did many rounds of CPR but completely forgot about the other people in the bay. Families were saying goodbye to their dead with just a curtain wrapped around them. I will never forget the sobbing and how it wracked their bodies. Previously I didn’t know the sounds or signs of death. Now I can’t forget them. All my fellow patients were over sixty. I was eighteen, and I looked fourteen.
In Paeds I was told that I would need to step up and control my destiny by reading and signing my own consent forms. I gained the right to understand my surgeries and their ramifications, but it sounded as though I was going to lose my freedom. I understand the need to empower young people, especially those who may have been ill their whole lives. But for me, the way transition was painted was snatching away the very little time I had for myself. I was going to lose the few hours a day I had which were not looking after my medical needs. I was devastated. I don’t think there is recognition of the number of secretarial hours behind being a patient with complex conditions, under many specialists and hospitals across the country.
I thought that transition, for me, would mean my mother not being able to come into appointments with me; that she wouldn’t be able to ring the pharmacist to chase up my medications for me; that she would only be able to come and see me in hospital for a few hours (if at all), unless I was dying. Obviously this wasn’t the case once I landed in adult services.
After hearing these horror stories, I am surprised and relieved to report that I can take my mum into appointments with me; that in fact, you are encouraged to do so, especially if the appointments are high stakes and complex. I was able to tell my GP to harass my mum (consensually!) about everyday things and minor hiccups (like ensuring she is there to take calls about things like equipment deliveries, which is important, because I am deaf and likely to miss the twenty attempted calls practitioners make.) I get the feeling that those working within peads hadn’t actually talked to adult teams about what concessions can be made, and so ‘worst case’ stories stuck with them where they probably had to intervene.
Transition is a time in which we need to empower young people. But it is also a time to let them explore and explain their own destiny and help them achieve that. Not everyone’s ambitions look the same, not everyone wants to be fully in, or out, of control. For a long time, transition stood for something which scared me. In hospital, I used to fear there would be a power imbalance when going into a consultant’s appointment alone. Thankfully this hasn’t been the case.
In terms of hospice respite care, I am going to lose all access to this at the age of 26, due to young people like me living longer, narrow definitions of young adulthood and a lack of funding. Even with my continuing healthcare plan, and my CCG asking all nursing homes if they would take me, the answer was no because their services are only for those age 55+ and adult hospices only take emergency admissions and those who are dying.
You may be shocked to learn that us young people have already seen the darkness of death. Many of us see it coming or are already wrangling with it in our own minds. We attend support groups for people with our conditions and when our friends from these groups die, we attend their funerals. When you live with a life-limiting or terminal illness you should celebrate each and every birthday. Lack of provision makes me scared for my next birthday. As it stands there are many, many young people in my position, many of them with additional communication needs which may mean you don’t get to hear this from them.
Transition is a time when we decide my destiny. Be honest about what you know or don’t know yourself as a practitioner. Sometimes telling me that my destiny is to have to take full control over my care isn’t what I want. It can take away my true destiny; which is to work with organisations such as NHS England and Together for Short Lives to help write guidance that will help improve the experience of other young people nearing transition.
I want every young person to get the opportunity to do whatever it is they want with their lives. I hope that all professionals use Together for Short Lives’ new Transition to Adult Services pathway to support young people to get there.
Hannah Hodgson is a young adult with many health complications with a diagnosis of Probable Mitochondrial Encephalopathy a degenerative genetic condition. Hannah has helped us develop our updated Transition to Adult Services Pathway, Stepping Up, and this blog is a version of the foreword she wrote for the new edition. We have also produced an updated guide to Transition for young people and carers.