When young people are too old

Ever since I became sick when I was 4 years old I’ve always seen the same doctor, relied on the same nurse to give me information, the same dietician to keep me on track, knowing they are only a phone call away. Then I turned 17. I went to my usual 6 month clinic visit and was told that I’m too old now and need to find an ‘adult service’. With no preparation for this move it was time to say goodbye to my paediatric team, find a new doctor, a new team and new supports….

Due to advances in medical technology, many children with a chronic illness or disability are now living longer, so stories like the one above are being heard more often.

As children become adolescents they outgrow the expertise of their child (paediatric) health care providers and require the knowledge of adult health care providers. This is where “transition” enters the picture. Transition is the “planned” move for young people with a chronic illness/disability from child health care services to adult health services.

To properly prepare young people and their families for the move to adult services, research tells us that discussions should begin early in adolescence. Young people need time to learn how to look after their health care needs, find an appropriate adult health care provider and begin to build trusting relationships. Families also need time to come to terms with their changing role.

Many parents find they go from being the main carer and decision maker in their child’s health care, to being a support-provider for their independent adolescent. If transition is not well planned and young people are not prepared for the differences they will face in an adult health care system, this can cause huge impacts on their health. They may feel that their needs are not met in their new ‘adult’ service and may stop attending regular appointments with their doctors.

The NSW Health GMCT (Greater Metropolitan Clinical Taskforce) Transition Care Program, for young people with chronic conditions arising in childhood, was established in December 2000 after clinicians raised concerns about the transition issues of these young people. The program now includes a Program Manager and three Transition Coordinators, based at Westmead, John Hunter and Royal Prince Alfred Hospitals.

To help improve the awareness of young people’s needs during transition - and better prepare young people, parents/carers and professionals - the program is producing a number of resources. These include fact sheets on a variety of topics relevant to transition. Included in the fact sheets are transition ‘checklists’ for young people and professionals. The program is also producing a resource kit for GP’s and is planning a transition website which will containing all this information.

The program’s main focus is to meet the needs of young people. To help the program maintain a youth-friendly direction, a Youth Forum will be held at Luna Park on April 22nd 2005.

This is an opportunity for young people to come along and express their views about what worked well for them in transition, what did not go so well and what NSW Health should change to improve the transition of young people with a chronic illness.

The Forum is open to all young people with a chronic illness or condition who have already, or are about to transfer to adult services. Of course a Forum at Luna Park must have a fun component – so some free rides and food will be offered to young participants.

If you would like more information about the forum, to ask any questions or tell us your personal transition story, please contact Rebecca Harris, the Northern Area Transition Coordinator on (02) 4923 6426.