Photo: South Wales Echo

Familial hypercholesterolaemia (FH) is a genetic disorder that occurs in about 1:500 of the population. The gene defect causes excessively high circulating levels of cholesterol that can lead to premature death from coronary heart disease. Once diagnosis has been made treatment involves lifestyle changes and, in some cases, drug therapy. For families with FH it is important that the children of affected parents are diagnosed before the age of ten. The children are often seen in a traditional clinical setting in a structured conventional format.

H.E.A.R.T UK is supporting Dr Stephanie Matthews from Llandough Hospital, Cardiff. Dr Matthews, Sister Suzanne Watkins and the team are heading up the first (pilot) children’s lipid clinic to be sighted in the principality.

The team from Cardiff have helped put together an interactive and educational programme that has been developed to help provide motivation and information for parents and their children from the area surrounding Cardiff.

How did the idea first start?

H.E.A.R.T UK was initially involved in a pilot programme that ran for 18 months at the Middlesex Hospital under the care and guidance of Dr Phil Lee, Julie Foxton and Maria Adiseshiah. The clinic was divided into five sessions that ran over several months. The sessions were all interactive and involved the children being taught in small groups in a style similar to cardiac rehabilitation classes (exercise first, followed by educational session).

Although the sessions were always well attended and very enjoyable the clinic was closed due to staff relocation.

Expectations in Cardiff and beyond…

To empower children and their families with familial hypercholesterolaemia (FH) to take control of their future health and other lifestyle managements.

The team

Dr Stephanie Matthews and her nurse Suzanne Watkins (Llandough Hospital), Julie Foxton (H.E.A.R.T UK), Phil, Sharon and Mike (Darwin Theatre Science), Bryan and his fitness team (Esporta, Cardiff) and numerous other staff are on hand to give support and practical help.

The children

Families and their young ones with familial hypercholesterolaemia. The family can include grandparents, aunts, uncles etc. Indeed on the first session the parents had thought that this new clinic was such a good idea that not only had they brought extra children but brought along extra adults too! Attending this ‘debut’ session were 12 children between the ages of eight and sixteen and fourteen grown-ups.

What happens?

Introductions are made first to the group as a whole. The children are then taken to go and perform their fitness assessment and take part in the fitness training organised by the Esporta staff and supervised by medical personnel. (Obviously, if some children are too young, they are given the option to stay with their parents. Usually all the children join in together.)
The adults meanwhile watch the specially commissioned five-minute video on FH, made by children for children. The parents are then asked if it is OK for their children to watch the tape as the content can highlight issues in a slightly irreverent way. They then have an interactive teaching session led by Stephanie.

The two groups swap over. The adults go off for fitness assessment and training and the children watch the video and have teaching.

At the end of the session the group is reunited and a quiz takes place. The children are pitted against the adults. (It was at this point that the children asked that the clinic be named the FH-UK club…)

What are the future plans for the clinic?

It is hoped that this clinic will provide a nationwide template for children’s lipid clinics throughout the UK. Cholesterol levels (levels are taken from hospital records before and after the clinic sessions – no blood tests are performed during the session), knowledge (assessed by pre and post- questionnaire), fitness (via validated fitness assessment) and dietary awareness (pre and post- questionnaire again) should have improved during the time of the clinic sessions. This should provide the evidence to help roll out this clinic in the future.

How did the first session go?

FANTASTIC! The sun shone and the attendance at the clinic was tremendous. We did have the extra incentive of Ryan Giggs coming along to open the first session. He was playing for Wales that weekend in Cardiff and had basically had his arm twisted to come along and open the clinic. He was great - he stood and smiled and signed photos for everybody for ages. The kids loved him - they could even tell us what colour socks he was wearing at the end of the day!

We are hoping that subsequent sessions are as dynamic, interactive and exciting as the first. We may even get Ryan back…

Sincere thanks from H.E.A.R.T UK go to the Hospital Savings Association (HSA) for providing a donation to help fund the sessions. We also would like to extend our gratitude to Esporta, Cardiff, who freely and generously lent their excellent staff (with their vast expertise) along with the space and venue for the sessions.

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