A specialist unit at University Hospital Llandough (UHL) has recently celebrated reaching a key milestone of 25 years.
The Lipid Unit at UHL is the only centre of its kind in Wales which provides a range of testing and care for those with high cholesterol for whom drug treatment or diet change has not worked. Usually people suffering from familial hypercholesterolaemia (FH), an inherited condition that means their cholesterol levels are higher than normal from birth.
Most individuals with FH will be adequately treated with tablets, but a small proportion may need lipoprotein apheresis. This procedure has been described as ‘dialysis for cholesterol’ and is a very effective, although invasive procedure for reducing cholesterol and progressive coronary artery disease.
The Lipid Unit at UHL is one of only eight lipoprotein apheresis centres in the UK and the only unit in Wales, providing a unique and vital service for Welsh and cross-border FH patients.
Dev Datta, Clinical Lead said; “Wales is at the forefront of identifying individuals with FH, with a comprehensive service for identifying individuals with FH across Wales. We are fortunate to be able to identify family members, and also offer lipoprotein apheresis for the small number of FH patients who need it.”
People with FH are at greater risk of heart disease and of the 120,000 people in the UK with FH only 15% know they have the condition. At least 28,000 children in the UK are also predicted to have FH but only 600 of these are known. Early diagnosis of FH and effective treatment reduces the risk of heart disease to ensure those with FH have a normal life expectancy.
Suzanne Watkins, Lipid Clinical Nurse Specialist, said “The Lipid Unit provides vital care for a number of patients where usual drug treatments have not worked for them. Patients who we treat repeatedly tell us they feel like part of a family due to the continuity of nursing care at the Unit which is a testament to the clinical and nursing team.”
David Fisher, from Salisbury, has been a regular at the unit since 1991. He said “I have now had 500 treatments and despite the journey and problems associated with it am extremely grateful for each and every treatment. I am only too aware of what the prognosis would have been in 1991 without it.
“Over the years there have been times when for one reason or another, the treatment has been quite literally, a pain. However, thanks to the girls who deliver the treatment, it is more often than not, like being an extension of my house. It is more of a family atmosphere and I certainly regard the staff as my friends, friends that I can talk to no matter what the problems are and I know that I can always pick up the telephone and be reassured should I ever have the need.”
To celebrate the key milestone of 25 years an event was held at UHL to reflect on the vital care and support the team and the Unit has provided to its patients. Speakers included Dr Stephanie Matthews, founder of the Unit, Professor Gil Thompson, Emeritus Professor in Clinical Lipidology from Imperial College London and Ms Jules Payne, CEO HEART UK. Dr Dev Datta, Clinical Lead for the Lipid Unit and patients who have received treatment at the Unit also shared their experiences.
The Lipid unit was first established in 1990 and moved into a purpose-built facility in 2009. It is a centre of excellence for DALI Fresenius Hemocare LTD for the UK and is the only unit that offers multiple treatment options for lipoprotein aphaeresis.
The purpose built facility at UHL now houses 4 day case beds, which are mainly used for lipoprotein apheresis, a reception area for patients and a clinic room. The unit is currently providing treatment for 20 patients from Wales and the south West and has cared for 35 patients since its inception.
Lipid is the medical word for blood fats and FH is an inherited condition that causes high cholesterol from birth. It is caused by an alteration in a single gene that controls cholesterol in the blood. Sufferers can have high cholesterol despite living a perfectly healthy lifestyle. If left untreated it can lead to early onset heart disease in patients as young as 30.
To find out more about the Lipid Unit and FH visit www.cardiffandvaleuhb.wales.nhs.uk/lipidunit or www.fhservice.wales.nhs.uk
