Leeds regional inherited cardiovascular conditions service (Children’s)

As you are now over 16 years of age, the adult service is better equipped to give you and your family the right care, treatment and support.

You may have been attending the children’s cardiology clinics at your local hospital or in Leeds for some time, so changing to the adult service may feel different and a little daunting. We hope that by providing you with this information we can encourage you to continue to attend your appointments and feel supported by the adult team. Please remember that if you have an inherited cardiac condition, regular follow up in this clinic is really important.

As you become an adult, your healthcare and lifestyle needs will change. Issues to consider may be; higher education and careers, insurance and family planning. There will be opportunities to discuss these issues in clinic as well as having on-going support from the nurse specialists working with the adult team.

Transitioning from childrens services to adult services

Becoming an adult means taking responsibility for your own health. You will be involved in all of the decisions regarding your condition. We hope you will feel supported by the team and an important part of this is building a relationship with us. Building this relationship will start with meeting the ICC nurse specialists, this may be at your last appointment with your paediatric consultant. You will then have a telephone appointment with the nurse specialist approximately 1 month before your first appointment in the adult service; you will receive a letter notifying you of the date and time for this telephone call. This is a good opportunity to ask any questions you may have about your first appointment with the adult team, it also allows the nurse specialist time to get to know you outside of the clinic environment.

People you may see in the clinic

• Consultant Cardiologists
• Consultant Geneticist
• Nurse Specialists
• Sonographers, who will do your heart scan
• Genetics Counsellor
• Counsellor

Where is the clinic held?

The clinic takes place in Outpatients, on E floor of the Jubilee Building at Leeds General Infirmary. A map will be sent with your first appointment.

Your first clinic appointment

During your first appointment with the adult team the doctors may want to repeat some of the tests that you have previously had, this is to ensure that they have up to date information in relation to your heart condition. These usually take place on the day, before you see the doctor. The doctors may also re-visit past medical history, request information about your medications and ask about how you are feeling at the moment.

Inherited cardiac conditions may involve more than one member of the family, so it may be helpful to obtain information about this prior to your appointment.

One of the nurse specialists; who you will have already spoken to over the phone, will be present to support you in clinic. You may like to write down any questions you want to ask in clinic (it is easy to forget them) as well as any medicines you are taking.

Your adult cardiologist will know all about your condition and the care you have had. All important information will be sent to your new cardiologist before your appointment. He/she will continue to work closely with consultants within Children’s Services.

Support and counselling

We offer support and counselling to individuals and families who are affected by inherited cardiac conditions and arrhythmias.

Support is available for those who have had a bereavement in the family due to sudden cardiac death. Also those who have been diagnosed with or are anxious about the potential risks of a hereditary cardiac condition.

Counselling support can be accessed at any time; it may be before attending the Inherited clinic or some time later, whenever it may help.

Frequently asked questions

Meet the team

Meet individuals who all work closely together to try and provide the very best service that we can. This multidisciplinary approach is one of the strengths of our service and allows all patients, young or old, to see the appropriate person with the most expertise in your condition.

Note: for questions relating to the scheduling of your appointment please use the contact number for the administration team found on your appointment letter.

Yorkshire Regional Genetic Service, Chapel Allerton Hospital
Yorkshire Heart Centre, Leeds General Infirmary

Ongoing support