A) You will normally have a specialist nurse you can contact if you need information or have any worries in-between appointments. You should have been provided with the number during your first appointment.

A good tip is to keep a list of questions as you think of them so when you have your appointments you have them to hand.

A) It is unlikely that the ward can make a promise to you in advance that you can have your own cubicle, as it all depends on the needs of the other patients on the ward at the time. If you voice your concerns on admission to a nurse, it is likely that they will do al they can to make your stay as comfortable as possible.

A) A nurse specialist provides information, education and support to families, young people and health care professionals plus welfare and educational services about the liver, liver diseases treatment and ongoing care. They work with a wide range of agencies both within the hospitals and the community.

A) There are only three paediatric liver specialist hospitals in the UK, so in order to get the best treatment for you; you might have to travel. However, each of the centres has developed links with regional hospitals through a programme of shared care. There are now shared care clinics where a liver doctors (and team) sometimes do a clinic at a local unit to save you travelling. Speak to your liver team about your thoughts and feelings and they will be able to tell you if there are arrangements which could be made.

When you are in adult services, there is the possibility that you can transfer to a hospital closer to you. Speak to your liver team for further information.

A) Local GPs are unlikely to be specially trained in childhood liver conditions so they may appear to know less than the doctors at your liver hospital. CLDF does a professional resource pack, GP practice pack and runs study days for health care professionals on childhood liver diseases so you may want to mention this to your GP as they may be unaware of this.