Adam first came to Great Ormond Street Hospital (GOSH) when he was seven years old. Last year, he moved to adult services. Here, he talks about changing hospitals and taking responsibility for his own healthcare.
"I’m Adam, I’m 18 and I have osteogenesis imperfecta, also known as brittle bone disease. It means my bones have got low levels of calcium and vitamin D and they can snap easily.
"I first came to GOSH when I was seven years old. I used to visit for operations to correct the breaks and have metal plates and rods put in the bones to increase their strength. More recently, I used to visit every three months for three days at a time. The treatment involves being put on a drip to increase the calcium and vitamin D in my blood stream and strengthen my bones.
"I left GOSH when I was about 17. Moving to an adult hospital was an all-new experience. I was quite nervous, because I’d grown very close to the doctors and nurses at GOSH.
"I’ve always been quite needle-phobic and had problems with cannulas (a thin tube inserted into the vein). My treatment requires that they’re put in for three days. There was one nurse on Kingfisher Ward who I trusted a lot, and I was concerned that when I moved hospitals, I wouldn’t receive the same level of care.”
Preparing for the change
"I’d started to consider the move before talking to my consultant as I knew I was fast approaching 18, and was starting to question when I’d be moved. At my next appointment, I spoke to her about the process and we agreed that the next time I was scheduled to have treatment (two months later) I would go to an adult hospital, rather than GOSH.
"I would have liked to have been informed a bit earlier, and possibly even have met the new staff beforehand. But it was a really smooth transition. I felt that I moved at the right time – being on an adult ward felt more appropriate because on the ward at GOSH, there would be six- or seven-year-olds trying to sleep at 10pm, whereas I’d still be up trying to do work or watch a film.
"I was always a very inquisitive child, so I wouldn't let the doctors just speak to my mum. I'd make sure I was asking questions so I always knew what was going on and what to expect. If you’re not doing that at the moment, start asking questions - make sure you know as much as possible because then you can let your new consultant know as much as you want them to know.
"We’ve all heard horror stories about adult hospitals, but they’re not true. I don't know if the treatment could be better than GOSH - which I know sounds a bit corny, but it is one of the best hospitals in the country - but I’ve been under the care of adult services for nearly two years now and the service is just as good. You shouldn’t expect that just because you're an adult you're going to be treated worse."
"The first time you go to your local hospital, it's like going to a new school – it's going into the unknown. You don't know what to expect and you've got to make character judgments about your new doctor. The first thing I did when I met him was talk to him, make sure I knew who he was and try to understand more about him so I knew what kind of person I could be around him. I had to make sure that I was acting mature enough for my surroundings.
“My first impressions of the adult hospital were that it was clean, friendly and welcoming, just like GOSH. The staff were all smiling and they all made way for me in my wheelchair which put me at ease.
"At first, they let my mum come with me outside of visiting hours. It was reassuring as I was still a bit dazed and unsure what was going on. Slowly, she began to leave more and more, so now I’m completely independent. My parents are still always there if I need someone to visit me in hospital. You might feel that once you’re at adult hospital you’re on your own but you’re not. Friends and family can always visit during visiting hours.
"The one thing I really miss about the treatment I received at GOSH is the staff. They were some of the friendliest people I’ve ever met and I’ve grown to know some of them personally - we still manage to keep in touch. But, at my adult hospital, I feel the doctors and nurses treat me instead of talking to my parents about me. I feel I’m a lot more included in decisions and what’s going on."
Managing university work
"A lot of the time my hospital visits are planned, so I'll speak to my university tutors beforehand to get access to the work I know I'm going to miss. It’s then my responsibility to catch up once I get home. You can take a laptop or textbooks into hospital with you but, at the same time, while you’re in hospital, you need to concentrate on getting better, so don’t stress. Just make sure it doesn’t pile up, otherwise you’ll end up doing all your coursework in the last week and just hoping it’s good enough.
"When I was younger, I never considered taking work into the hospital. But now, I always bring it with me. It's going to sound stupid, but it's almost enjoyable, because you do get to a point when just watching daytime TV is a bit rubbish. It's nice to sit down for a couple of hours and do my own thing to make sure I'm keeping up to date with stuff I'm missing."
"Moving to adult services has given me a real sense of independence. I book my appointments and, now I have my car, can take myself to and from hospital. I’ve got the confidence and the skills to do things independently and no longer need to rely on my parents for help.
"Sometimes I feel our parents worry more than we do, and it can be a bit annoying. If your parents are really worried about you, the best thing you can do is show them you’re happy so they’ll stop worrying as much. All they’re doing is worrying because they’re concerned about you. Show them that you’re grown up and mature enough, and I’m sure they’ll be happy."
"The best tip I could give you is to just embrace the change. It helps you mature and grow up quicker. It helped me before going to university as it’s enabled me to become independent quicker than other people.
"I understand that some of you out there may be more worried than I was when I went through transition. The main thing I would say is just keep your head held high, be confident and look forward to it. It’s a new experience and it will be fun in the long run."