When you are a young person who has been diagnosed with a heart condition in childhood you may not know what to expect when you move from children to adult services.
Find out more about transition to adult services below.
Who can I contact if I am worried about my heart condition?
If you have concerns about your heart condition or treatment, please contact your cardiac nurse specialist team.
The nurse specialists can offer advice and information about your heart condition, signpost you to further sources of support and information and speak to your consultant for you.
If your are unwell you can also seek advice from NHS 111.
If you feel it is an emergency always dial 999.
Oxford University Hospitals NHS Foundation Trust
Tel: 01865 234 985 or call 0300 304 7777 Bleep 4170
Messages are checked throughout the day and a member of the team will call you back. Alternatively, you can email the team:
Monday to Friday 8am until 5pm
For urgent clinical advice during normal working hours and at weekends and bank holidays:
- Contact Ocean Ward on 02381 206470.
- In an emergency, always call 999.
Nurse Advice Answerphone Line (for non-urgent enquiries):
- 02381 204659 (Monday-Friday 9am-5pm).
- Please leave a message with your details, a contact number and the reason you are calling. Messages are checked throughout the day and a member of the team will call you back the same day or next working day.
About our transition service
Transition is when patients gradually prepare to move from the children’s services to adult services. Most young people eventually move to adult services around the ages of 17 or 18 once they have been given the opportunity to meet their adult teams and tour the facilities.
The paediatric and adult cardiac teams work together in Southampton and both teams attend team meetings when decisions are made about procedures and patients.
Transition is important for all children with conditions which need ongoing treatment care into their adult lives to provide the right information and support ahead of the move. This is not just because of a change in clinical teams but because the move is combined with other big changes in young people’s lives at this time of life.
The British Heart Foundation publishes some useful leaflets aimed at empowering young people to know more about their heart condition.
View and download the cardiac transition service document developed by Southampton Children’s Hospital for patients, parents and guardians.
In Southampton, a pioneering programme known as Ready Steady Go has been developed to help with transition which is supported by the Thames Valley and Wessex Congenital Heart Network.
The programme, which can be accessed via the link above, provides useful paperwork for young patients to work through (at home and also with doctors or nurse specialists) to help them ask the right questions to understand how their heart works and to obtain the information they need to make decisions.
British Heart Foundation Transition: Your journey
This video from the British Heart Foundation provides more information, while additional information and support is available from the organisations listed below.
Teen Heart: British Heart Foundation support group for ages 13 to 18 with invites to online events and face-to-face meet ups with other teenage and young adult heart patients.
One Beat: British Heart Foundation support group for ages 18 to 30 with workshops on careers and money management as well as support from others living with congenital heart disease.
The Somerville Foundation
The Somerville Foundation offers a support group for young people and adults providing emotional support on how to prepare for surgery, how to cope with needle phobia, information regarding work and finance, travel and much more. Emotional support is offered one-to-one via telephone.
Dedicated youth site for young people with single ventricle (pumping) heart condition. Youth Zone is for ages 11 to 16 from national support group 'Little Hearts Matter'. It is run by a youth leader and offers advice and support to young people. Once patients reach 16 the youth leader offers one-to-one support.
Heart Research UK
Heart Research UK is a national charity organisation which funds medical research in to the prevention, treatment and cure of heart disease. Its website provides a range of information about topics such as travel, learning to drive with a heart condition, contraception, how to exercise safely and more.
Young Minds is the UK’s leading charity committed to improving the emotional wellbeing and mental health of children and young people. The charity provides expert knowledge to professionals, parents and young people through its Parents’ Helpline, online resources, training and development, outreach work and publications.
Childline is a counselling service for children and young people under 19 which became part of the NSPCC in 2006. Trained counsellors are on-hand to provide help and support to young people with any issues they are experiencing. Childline counsellors will help young people to talk about what is going on and to think about things they could do to make things better.
The YMCA federation is the oldest and largest youth charity in the world. In England and Wales it supports 228,000 young people every year to ensure every young person they meet has an opportunity to belong, contribute and thrive. The YMCA's areas of interest are: support and advice, accommodation, family work, health and wellbeing and training and education.
In Southampton, dedicated youth worker Becky Cutler provides support for young people aged 12 to 18 years. Becky has worked with young people with congenital heart disease for many years, ensuring they are fully involved in decisions made about their care, enabling their voices to be heard and helping them gain the support they need to lead fulfilled lives.
To be referred to Becky for support, contact the cardiac nurse specialists on 023 8120 4659.
She provides support with:
• Emotional support
• Signposting to specialist services
• Events and activities
• Peer support
• Inpatient stays
• Outpatient clinics
For more information about Youth Events for Young People with long-term health conditions please click here.