Support for parents and carers

Supporting a young person making the transition to an adult kidney service can be an anxious time. If your child has transitioned from children’s services, you might have formed a strong bond with the team who cared for your child when they were younger.

The adult kidney service is much larger and you may not be familiar with all the staff involved in your child's care. This can be daunting for both you and your child. Try to remember that the healthcare team will want to work in partnership with you and the help make sure the transition is as smooth as possible. We're here to help.

We also encourage all young adults to take greater responsibility for their kidney care with a view to becoming more independent.

Challenges for young people

Young kidney patients can feel isolated. This can sometimes result in missed medicine doses or missed clinic appointments.

The demands of long-term treatment, dialysis and clinic appointments can make moving away from home, or starting work or college difficult.

Many young people also feel anxious about finances, body image, exam pressures and forming relationships.

You'll no doubt want to help and support your child as much as possible. However you might also feel that you need some advice and support too. We'd like to support you in helping your young adult to develop skills to become independent in their healthcare.

Support

The whole kidney team will support your young person as they make their journey to the adult kidney service. We also have a part-time young adult kidney care nurse coordinator, who is responsible for coordinating the process and supporting your child after they've transferred

To find out more about local services, talk to your GP or practice nurse. If you feel that you'd benefit from some psychological support or counselling, ask your GP to make a referral to IAPT (Improving Access to Psychological Therapies), a community service for people who may be experiencing depression or anxiety. Some IAPT services accept self-referrals.

There are also charities and organisations that can offer you and your child support:

• Carers UK
• Carers Direct
• Transition Information Network
• MIND
• YoungMinds
• Citizens Advice Bureau

Peer support

A young adult kidney clinic is held every other month. During this clinic parents and carers have the opportunity to meet and chat with other young adult patients together with their parents and carers, in an informal setting over some light refreshments. Young people are seen by their paediatric team and new adult kidney teams at this clinic. Your nurse will be able to tell you when and where these clinics are held.