Many of our youngsters with a disability have been served by a model that involves the Ryegate Children’s Centre and the Sheffield Children’s Hospital, often with very little involvement from the GP. As they become adults, the model changes so that the GP becomes the key clinician who oversees referrals to specialist departments and the adult learning disability team. As a GP as well as a mum of a child going through this transition, I thought it might be helpful to look at ways to make this transition work well.
From 2015, most GPs in the city have been offering an annual health check to people with a learning disability from the age of 14 years. Here are some thoughts about how to make the check more useful.
Before the appointment:
- Make a list of the different health issues, so you can check the GP has them all summarised on the computer and there is clarity about who is taking responsibility.
- List any health concerns that you currently have (hopefully you will receive a questionnaire before the appointment to help with this).
- Ask if a nurse or a doctor will be doing the check. If the young person’s health issues are complex, would the GP be the best person to begin with?
- Would the first appointment be better without the young person (assuming their consent), to bring the GP up to speed?
- Will the practice need to make reasonable adjustments to care for your child? (e.g. routine appointments booked at quieter times, ways of coping if the waiting room is busy, best ways of communicating)
- Ask for these adjustments to be flagged on your child’s notes as an alert; this will help the receptionist at the point of phoning. (N.B. You don’t have to wait until your child is 14 to do this!)
- What monitoring needs to be done? Do you need to introduce your child slowly to the practice to get them used to having weight monitoring, blood pressure checks or blood tests?
- Would a one-page profile or a hospital passport (see box) be helpful?
- What knowledge needs sharing about a maybe rare condition?
Finally, make sure your young person is accompanied by someone who knows their medical issues well.
Click here to download a hospital passport form that you can complete on your computer.
By Clare Peck, SPCF trustee