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A young adult on an adult’s hospital ward

HannahMckearnenHannahMckearnen Member Posts: 8 Listener
edited June 2019 in Guest blogs

Hannah is 26 years old and has worked in the NHS for 7 years. However, hospital has been a more prominent part of her life for much longer. She was born with a complex health condition which causes a severe impairment of her gastrointestinal system and also affects her kidneys, heart and joints.

I began the transition from child to adult services 10 years ago. At the time I was spending a lot of time in my local hospital as an inpatient and, in the lead up to my sixteenth birthday, I was very aware of being moved to an adult ward. My first admission as (an official) ‘adult’ was only a few days after my sixteenth birthday. Only weeks earlier, I’d been smoothly admitted to a children’s ward and yet days after The Big Sixteen, I found myself on an open ward of confused, bed bound 90-something-year-olds. It was scary.


Meanwhile, the adult ward and the children’s ward argued over who would take me and I was eventually moved back to the children’s ward. This happened several times over the coming year and each admission was more stressful for me and my family. I remember on one occasion, my consultant from the children’s team shouting at the children’s staff for accepting me. Then he shouted at me until I cried. He told me I was not a child anymore and I needed to grow up.

I’d been under the consultant since I was 6 and his version of preparing me for transition was telling me that I should be staying in hospital on my own, without family support overnight, from the age of 14.

This was at my local hospital, but I was fortunate to also be under a specialist team at Great Ormond Street Hospital (GOSH) who handled my transition much more smoothly. My consultant at GOSH spoke to me about what I wanted and talked to me about what she wanted for me. She told me she would like me to be passed onto someone she knew, in Manchester, as she felt he would be best at looking after my care. She told me about my new consultant and arranged an appointment for me to see him. For the first few months, I saw both consultants. Then I was discharged from GOSH a couple of months after my eighteenth birthday.

I’m still under the same hospital in Manchester, where I have received fantastic care from multiple teams and services. From early on, the staff on the ward treated me like a teenager and young adult. They recognised what was important to me – keeping in contact with my friends, family and college tutors, and being able to carry on doing my university work. The nurses would often come in and ask about my studies, as well as offering me quiet space or a side room if it was available. This would enable me to continue studying. The ward has often put me in bays with other young or like-minded people which has been a lifeline on long hospital stays. I feel like my teams always see me as a whole person and have given me age-appropriate treatment as I've got older.

Children’s and adult services are often treated as binary, but we don’t wake up on our sixteenth birthday and become a new person. Growing older is a gradual process. Transitioning can be daunting, and it’s important that both children's and adult services recognise all transitioning patients as the young people they are. Young people have a very specific set of needs – studying, friendships, relationships and most importantly, finding their independence. Negotiating life as a young adult can be overwhelming without the added stress of hospitals and health. I think more needs to be done to recognise the needs of young people transitioning. Young people should be a part of these changes to find out what is important to them and how best they can be supported through the transition to new services.

How do you feel your transition was handled? What would you suggest to ease a stressful situation?

Replies

  • zakbloodzakblood Member Posts: 419 Pioneering
    thanks for the story and share 
  • April2018momApril2018mom Posts: 2,869 Member
    My son is still little. But I’m bookmarking this for the future. I have a few questions to ask. How was your transition? Did the hospital give you your paperwork or not? What tips would you give to a new special needs parent who wishes to advocate for their kid? 
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    This is an interesting story @HannahMckearnen and thanks for sharing it with us.  Sorry to hear that the transition from child services to adult services in hospital was so traumatic for you and how horrible of the consultant in the children's team to shout at everyone, including yourself!  Glad that it was better for you from then on.  

    When I was discharged from the Royal Hospital for Sick Children in Glasgow at 16 to an ordinary adult ward in another hospital I felt extremely daunted and unhappy.  I had been attending this hospital for many years and really did not want to move on.  Luckily I did have lovely nursing staff and doctors in the new hospital who did understand my apprehension and made me feel included by checking on me a lot and introducing me to other younger patients on the ward.  It made staying in other hospitals in the future that bit easier.  Maybe the team of nurses and doctors need to have a bit of training in transitioning patients from children's to adult services and made more aware of the patients fears and needs along the way.  :smile:

    Winner of the Scope New Volunteer Award 2019.   :)
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    Very interesting @HannahMckearnen. Thank you. Your consultant sounds like a piece of work, to be honest. But I'm glad your GOSH experience was a bit better.
    Senior Community Partner
    Scope

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  • RamRam Member Posts: 40 Pioneering
    A really important issue I think, thanks for writing about it. My experience, as a child in the 1970s and 80s,  was that the focus was on fixing me with surgery, splinting etc.. Once I turned 16 it was almost as if they felt their job was done and I was left to get on with it. There was no discussion of what might happen to me as I aged and, since then, although I have received some excellent care, I have had to deal with each issue separately and do lots of my own research to find consultants and treatment. It was a big change when I had to start going to appointments without a parent and there was no preparation for that. It was often made more difficult by notes being lost, or delayed and I had to explain the same things a lot. I would find a multidisciplinary adult CP service really useful but it doesn't seem to exist.
  • Marty772Marty772 Member Posts: 2 Listener
    As a parent of a teenage daughter with special needs & going through the adult transition herself, I think it is importan that the NHS not only recognise the difficulties that our children face. But also that if/when admitted to hospital that they are treated with the correct individual care needed. There should be a ward/bay with a specific number of beds for these young adults & appropriate nursing standards with both mental health and learning difficulties skills. Like mental health, learning disabilities is hugely underfunded & overlooked by both health authorities & government. 
  • northwestmum2northwestmum2 Member Posts: 55 Courageous
    My 2 youngest children both have 'mild' cerebral palsy& ASD traits- older one, now almost 21 yrs did not like the transition to older services at all- even though he was almost 17 when it was completed- the youngest now 16(he wasnt even diagnosed with CP until last year) doesnt like this imminant changeover either- i dont understand why the medical 'powers that be' feel the need to do this at 16 even though most everything else classes a child isnt an adult until 18 years!(voting,drinking alcohol,now smoking) So what makes the medical profession believe its right to force teens (some who dont even leave school till 17yrs) into the adult medical world?,especially vulnerable youngsters who may have younger 'behaviours' than their actual years.This should stop now- if 18 is adult for other laws then it should count for everything, including medical and maybe even the age of consent.These vulnerable young people often need more help,and explanation, they dont need pushing straight into an alien adult world before they are ready.I still accompany both my sons to hospital/ drs/ dental/ physio appts because that is what THEY WANT me to do-im sure some other youngsters feel the same- doesnt that tell the medical profession something?
  • northwestmum2northwestmum2 Member Posts: 55 Courageous
    No one 'HAS TO' go to medical appts without their parent (or another accompanying adult) if they dont want to- something to bear in mind for other teens- even over 18's or over 21's,in fact anyone, can have someone to accompany them-  if that is what they want, and are happiest doing- my 2 sons want my help and to accompany them (i would of course give them privacy to change or see the drs alone if they want/need to) I certainly wouldnt just leave them to do everything alone if they feel they are not ready.And i dont expect the medics to do so either.Im afraid i would have been reporting that consultant if id witnessed that.
  • jae377jae377 Member Posts: 27 Courageous
    This is not so much about transitioning from childhood to adulthood as the NHS system of putting everything in compartments. So if you are currently being treated for e.g. a cardiac issue you go on the Cardiac Ward -totally ignoring any other needs you have, and this includes being a young adult. This means that staff often have no idea how to deal with you other than for the issue being treated. Most staff have no idea how to cope with a physically disabled patient who is mentally fine but perforce practically immobile once in a bed. The experience of ending up in a ward full of nonagenarians is all to familiar even if one is a mature adult oneself, and it is still disconcerting. It also means staff tend to treat everyone as if they have the same mental level. The experience of being trapped in a bed whilst the 15 other (very elderly, hard of hearing ) patients all listened to their tv's on maximum and deafening volume still lives with me from my last in-patient procedure. As does the total lack of understanding and knowledge of PTSD "we are not trained in that on a heart ward". 
    The argument given is that it is a more efficient use of specialist doctors time / resource and has little to do with age or need.

    Perhaps we need to acknowledge that there are different life stages and plan bed use accordingly so young adults are perhaps at one end of a ward and the very elderly at the other with gradation in between ?


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