Children’s Liver Disease Foundation held its National Conference and Family Day on Saturday 6 October. The afternoon consisted of four parallel sessions covering various topics.
The session led by Dr Janet McDonagh provided parents and young people with the opportunity to explore their concerns and solutions surrounding moving to adult services.
There were 35 people present made up of young adults, parents and carers. Some of the key themes and discussions were;
1. Age of transition – why does it have to be 16? Some parents wanted it to be 24. Why can’t they stay in the children’s hospital longer?
2. Many felt that they were given mixed messages when in the transition process. What’s your experience?
3. Why can’t we see the same doctors in adult services and build relationships?
Please feel free to share your views and experiences on the above points.
1. Children cannot and I believe should not stay in children's services much past the age of 18 as they are no longer classified as children. Moving to adult services is always going to be difficult, and sometimes upsetting to leave a team that you have grown attached to. However, delaying the inevitable dosen't seek to benefit any of the parties involved. I would agree that a young adult clinic in adult services would be helpful. But the young people in the process of transition have to live with their condition for the rest of their lives and building confidence and independence is important.
Also, not to be too morbid but for those who have been suffering with liver disease for a considerable amount of time, it is really wonderful to have lived so long that the process of handing over to adult services is possible, as there are many who didn't get this far.
2. My experience was that transition was talked about for a while, and then no official transition appointment was given but a doctor in Plymouth was recommended and then I began to go to appointments there. It was difficult and quite a shock to the system, but then so are many things to do with growing up. The doctors who I see in Plymouth trained with my Kings doctors and they liase with them and I occasionally see Nigel Heaton in the transplant clinic.
3. I think in regard to continuity, with paediatrics there are fewer specialists because it is such a specialist field of medicine so you get more accustomed to the team and how they work and the organisation and structure. In adults there is more likely dependent upon which hospital you attend for check up's a bigger team who see a lot more patients for a variety of different conditions, from different backgrounds. There isn't always the same amount of time available to build relationships, also adult services are really different, and it takes time to get used to their way of dealing with patients and it is unlikely they will have had specialist training in how to deal with young people, and parents of those who have suffered with liver disease for an extended period of time. However, I must say I have been extremely luck and Dr Matthew Cramp and Dr Jon Mitchell at Derriford Hospital in Plymouth have always been excellent in dealing with my case since I transferred there 6 years ago.
My daughter was 16 when diagnosed with AIH so went immediately into adult services. She is treated at St James in Leeds by Dr Davies and specialist nurse Ceri. Her treatment has been fantastic and she has a good relationship with the team.
It was hard as a parent that she had to sign all her own procedure forms and that she was told how fatal her condition was (I was present), but we talked about it together and I reasured her. In some ways, however it has meant that she has taken control of her illness and her medication with support from me.
I do however feel that there should be an inbetween stage 16-18 as when all said and done she is still classed as a child under dental procedures! In general the whole age needs looking at, correct me if I wrong - 16 to get married, have hospital procedures, get a job, 17 to drive, 18 to drink, leave official edcuation and dental work. Confusing or what?
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