Teenage rheumatology clinic for parents and carers

The majority of Rheumatology conditions can continue into adulthood.

The purpose of this resource is to help parents and carers understand the transition process from children’s to adult healthcare and explain how parents and carers can support their child or young adult.

Social challenges

Knowing how to pace themselves is a challenge for people of any age with a rheumatology diagnosis, but can be particularly tough for young people because of peer pressure, exams, and the desire to fit in and appear ‘normal’.

It can help to pace activities. For example, having an early night on a Friday may mean they are better able to socialise on Saturday. They might find that telling a few of their close friends about their arthritis helps make this juggling act easier.

It is important to know the side effects of any medication, and if any precautions need to be taken. We often discuss these issues with your teenager alone as the conversation often involves talking about alcohol, drugs and sexual health. Mental health is discussed routinely in adolescent clinics, this is usually also done without parents or carers present. What we speak about is kept confidential.

Although it is challenging to juggle school or college, a social life and dealing with their diagnosis and treatment, it is worth encouraging your teenager to build up work experience through weekend or holiday jobs or work placements as much as possible. This experience will widen their social circle, build their confidence and broaden their CV. It will also help them to find out what kind of work suits their personality and skills, and what they can manage.

Managing their own healthcare

Helping your child to gradually become more responsible for their healthcare will help them longer term. As they develop self-awareness and knowledge about their condition, they will become more confident when working with healthcare professionals. Every young person is different, but by the start of secondary school they should have a fairly good understanding of their condition and treatment.

Examples of ways to help them start taking responsibility include:

• allowing them to become more responsible for taking their own medication, maybe using a reminder on their phone
• asking them to read clinic letters and keep a list of questions
• encourage them to contact the rheumatology nurses themselves if they need anything

By slowly handing over responsibility for their medication or physiotherapy exercises they will learn the benefits.

They will make the occasional mistake but will learn the consequences of not keeping up with their routine.

Many young people go through phases of not wanting to comply, but this is part of growing up and asserting their independence.

Learning from these experiences will help them to make confident and informed decisions in the future.

Transition to adult healthcare services

Health professionals may discuss ‘transition’ with you and your child from around the age of 12.

Transition is the process of moving from children’s to adult health services, which usually happens around age of 16.

If healthcare professionals do not initiate this discussion, ask them yourself about this transition and how transferring to adult services will take place.

It is natural for parents to find the transition process a bit challenging and some find it difficult to ‘let go’ and hand over responsibility to their child.

We understand this and will do what we can to support you and your child.