Support for adults with congenital heart disease

Heather West

Heather West, Adult Congenital Heart Disease Specialist Nurse at Guy’s and St Thomas’ Hospital in London, talks to our Senior Cardiac Nurse Emily McGrath about the support that is available for adults with congenital heart disease.

What support does your service provide for adults with congenital heart defects?

Patients receive lifelong care. We have a dedicated team of cardiology consultants, surgeons, specialist nurses, cardiac physiologists and admin staff, supported by outpatient clinic nurses and ward nurses.

Patients have our details and know they can contact us at any time with their concerns, however small

We provide regular outpatient appointments, the frequency of which depends on the individual’s condition and the consultant’s advice. Patients also have our details and know they can contact us at any time with their concerns, however small.

We assess patients for psychological issues through a small questionnaire. The consultant sees the results and asks GPs to refer to local support as required. In future, we are looking to have a psychologist within our team.

We have nurse-led pre-assessment clinics for patients being admitted for surgery or other treatment. This allows us to spend time with the patient and their family, carrying out an assessment, performing routine tests such as chest X-ray and blood tests, and answering questions.

What happens when people transition from a children’s service to an adult service?

We work closely with the Evelina Hospital. When a patient there is reaching transition age (any time from 14 to 18) they are invited to a ‘transition clinic’ with their paediatric cardiologist, one of the adult congenital cardiologists and one of our nurses with a specialist interest in transition.

We organise very informal transition days. Speakers talk to the patients and families and answer their questions.

During this clinic, the patient and family meet the adult team, and the transition nurse explains more about the set-up, service and team at the adult clinic. Consultations include an explanation of existing care and treatment and what may be required in the future.

There’s also information about family planning and career options, and lifestyle issues such as alcohol, piercings, tattoos and smoking. It’s about helping the young person become more independent and better understand their condition.

A patient may attend one transition clinic or several. It is very individual. We also organise very informal transition days, held on a Saturday. Speakers, including a consultant psychologist and an adult patient, talk to the patients and families and answer their questions.

Do you offer extra support later, such as when patients are thinking about starting a family?

Pregnancy is a subject that is discussed in many consultations. If a patient is planning on starting a family we encourage them to tell us so we can organise tests to see how their heart is performing pre-pregnancy. We may need to change medication before they conceive, and we run cardiac obstetric clinics where we provide pre-pregnancy counselling.

During pregnancy your heart has to work harder, so if you have congenital heart disease you may need extra assessments during pregnancy. We try to avoid unplanned pregnancies, so we always give advice about contraception.

Do you see differences between people diagnosed as children and those diagnosed as adults?

When a diagnosis comes later in life, it can be more of a shock. Sometimes it is a question of whether the patient can manage their diagnosis and lifestyle change (if needed). It’s important that we reassure them that they can still lead a good quality of life.

Are specialist grown-up congenital heart (GUCH) disease services available in all parts of the country?

They are not available in all hospitals. There are a number of specialist centres in the UK. This does mean some patients travel a long way for their appointments. Many are happy to do this, but if appropriate we can refer a patient to a centre closer to their home.

Katie Miller meet@teenheartSupport for young people with a heart condition

The BHF’s [email protected] programme is a support programme for 13–18-year-olds who are living with a heart condition. Through our website, social media, booklets and an events programme, we provide support and opportunities to meet other young heart patients. We are now extending our support programme so young people over 18 can continue to be members and benefit from our tailored information, events and support.

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