Hospital facilities for young people
Patients will usually be looked after at Leicester Royal Infirmary (LRI) until they are 16 years old. Between the ages of 16 and 18 we can offer a choice of treatment at LRI or Glenfield Hospital where our adult heart services are situated. Those children staying in hospital for treatments and tests are looked after in different areas of the children’s ward according to their age. Our older children have their own space on the ward to relax, watch TV and play computer games. There is also an area in the Outpatient department specifically tailored to our young patients needs.
Once our patients have reached 19, they will have moved across to Glenfield Hospital for their ongoing care for both outpatient clinics and inpatient treatment. We try and accommodate our young patients in their own room on the ward and have rooms for parents within the hospital if they want to stay. For our adult patients with special needs we also have the option of a parent or carer staying overnight in the same room. Our specialist nurses will be on hand to help make arrangements.
What does transition of care mean?
The term transition is used to describe the process of planning, preparing and moving from children’s health services to adult health services. It is
described as a process as it happens in stages over a few years.The process usually starts around age 12 to 14 years in preparation for transferring to the adult service between 16 to 18 years of age. Not all young people will transfer at the same age and the transition process helps to establish the right time for each individual young person.
What happens during the transition of care from children’s to adult services?
Transition is a gradual process which supports our young people and their families to understand their heart condition.
It will help develop the skills required for our young people to feel confident when talking about their hearts and to be able to manage their condition more independently.
Both the cardiology consultant and specialist nurse will coordinate the process. You will be invited to attend meetings with the specialist nurse who will provide information and support.
There are usually a minimum of three meetings but this is flexible and will depend on the support required to ensure both our young person and their family feel ready to move to the adult service.
What should my child expect?
The specialist nurse (and/or cardiology consultant) will provide education about their heart condition to ensure they understand their diagnosis, any procedures that have been undertaken and what may be required in the future.
Information is provided to help your child make informed choices regarding lifestyle and how to keep themselves healthy as they take on more responsibility for their own health and wellbeing.
Your child will also be introduced to the adult team who will be caring for them in the future.
How can I support my child through this process?
As a parent you will have been used to making the decisions regarding your child’s health such as organising appointments, arranging transport, ordering and administering medication and finding out information.
By supporting and encouraging your child to become more involved in their health care and do some of the things you have previously been doing for them will help to support the transition process.
Allowing your child to attend part of their clinic appointments by themselves (such as observations or scans) will also help to prepare them for attending appointments in the adult service where you may not be present.
The transition process is also there to support parents and we would encourage you to raise any concerns or worries you may have.
Anticoagulation refers to certain types of blood thinning medication that help prevent blood clots forming in the circulation. Warfarin is a commonly used anticoagulant and requires regular blood testing at a GP surgery or hospital to monitor the effects. Arranging and attending appointments can be time consuming and inconvenient for busy people and so we encourage our young adult patients to consider self-testing at home. This involves doing the same skin prick test done in a clinic and using the same hand-held monitoring device. If you have recently been prescribed warfarin, or have been taking it for some time, and would like to find out more about home testing, please contact our specialist nurse team or talk to the doctor at your next clinic visit.
Support and advice
Our specialist nurse team and the doctors in clinic are available to offer advice and support for those living with a congenital heart disorder (CHD). There are no stupid questions! A number of national charities also provide support for young adults with CHD. Many of these do this through Facebook groups, their websites, a helpline and other platforms, often involving people living with CHD too. If you are someone with CHD and want to share your own experience or help other young people with a similar condition then these charities would love to hear from you.