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Nursing expert says specialists can play a life-saving role

THE nursing role is diverse and crosses many fields but the delivery of patient-focused care remains at the heart of the profession.

RCN Wales has been making the case for specialist nurses who have the expertise and knowledge to deliver appropriate care based on the patient’s particular needs and circumstances. This specialist nursing can make a real difference to the lives of patients and their families.

There are many specialist fields that need recognition and investment in terms of staff numbers, training and funding.

One role I would like to bring to the public’s attention is that of the specialist nurse for familial hypercholesterolaemia (FH) – also known as inherited high cholesterol.

We all know high cholesterol can have a detrimental affect on a person’s health and is a contributing factor to coronary heart disease – in some cases leading to heart attacks.

What is not so widely recognised is that FH is a condition that is not only common but can prove fatal.

FH – characterised by high cholesterol levels in the blood – is a genetic disorder and there is a 50% chance of inheriting it from a parent who has the condition.

Many of us may attribute coronary heart disease (CHD) to a bad diet or unhealthy lifestyle. What we eat can determine our health. But one of the contributing factors to CHD is FH.

Another misconception is CHD occurs in older people. What is not widely known is young adults are at high risk of presenting with FH.

It is estimated that there are 6,000 people in Wales with FH – one in 500 people – but only 1,200 have been diagnosed. This means there are 4,800 people in Wales alone who are unaware that they have FH.

It is crucial that cases of FH are identified early to prevent CHD developing and that those with the condition are in good health to receive treatment.

It is also vital that cases are identified to support family members who may have inherited FH and require treatment.

Nurse-led cascade screening has proved to be an effective and inexpensive method of identifying families who have FH. It is used to trace family members and screening starts as soon as an individual case of FH has been diagnosed.

There is a pilot project in Bridgend and Cardiff, where it is a specialist nurse’s job to identify and diagnose people and their families with FH.

This project has proved very successful and has the potential to be rolled out across Wales.

It is clear that this service has a very real public health benefit and may prevent FH developing into CHD through early intervention, diagnosis and treatment, ultimately saving lives.

In addition to the commissioning of a cascade screening service across Wales, there needs to be a national team of specialist nurses and support staff to facilitate the roll-out of this nurse-led service.

The involvement of the specialist nurse is fundamental to the success of this service.

Following diagnosis an initial consultation with the consultant lipidologist, a patient is referred to the specialist nurse who provides information and gives explanations related to the identification, diagnosis and management of the condition including lifestyle information.

The nurse will then go on to support family members in cholesterol management.

Apart from the practicalities, the specialist nurse is an educator raising awareness of the condition to the patient and their family and promoting patient support groups.

The public health benefit of this service and of the nursing team in diagnosing this condition is immeasurable. Early diagnosis and treatment can save the lives of those with FH and their families.

Raising awareness of this condition needs to be explored by the Welsh Assembly Government as this service supports the patient and also pays a wider benefit to the health of our nation.

Richard Jones is the acting director of the Royal College of Nursing in Wales

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