Lymphoedema specialist for children and young people in Wales is first in UK

Services for children and young people with lymphoedema will be improved as a new dedicated national paediatric specialist post is created in the Welsh NHS, Health and Social Services Minister Mark Drakeford has announced.

The post is the first of its kind in the UK and will help to ensure that more lymphoedema care for the 54 children with the debilitating condition in Wales will be provided closer to home in the future, instead of families facing long journeys to specialist centres in London and Liverpool.

Lymphoedema is a chronic swelling caused by the failure of the lymphatic system. It can be the result of congenital abnormality or damage caused by inflammation, infection, trauma, tumour, surgery or radiation. The condition requires lifelong management.

For children, the physical impact includes pain, swelling, reduced range of movement, skin changes, decrease in muscle strength, difficulty in walking, running, playing and grip function.

An audit of childhood lymphoedema in the UK, published in 2014, found that childhood lymphoedema is rare and there are few healthcare professionals in the UK with the experience of diagnosing and treating lymphoedema in children.

In Wales there is currently no lymphoedema paediatric clinic. There are only a small number of specialist lymphoedema centres in the UK which will accept paediatric referrals, including St George’s and Great Ormond Street Hospitals in London and the Royal Liverpool Hospital.

Some parents in Wales refer their children direct to these hospitals and travel there at considerable cost – 90% of children with lymphoedema have previously attended appointments outside Wales.

Professor Drakeford said:

“Lymphoedema has a significant impact on a person’s quality of life and their ability to carry out normal activities.

“Due to the small number of centres across the UK which provide paediatric lymphoedema services, Welsh children often have difficulty accessing appropriate services and treatment.

“The new Welsh specialist post I’m announcing today – the first of its kind in the UK, will improve the services on offer to Welsh children, allowing them to be treated closer to their home.

“It will offer a single point of contact, reduce waiting times for children and families seeking appointments, and will work closely with the existing staff in the lymphoedema network to raise awareness in the diagnosis and treatment of lymphoedema in children.”

Having a paediatric specialist post will help to enhance practitioners’ knowledge and awareness of the condition in Wales. A paediatric lymphoedema pathway will be developed and telehealth services will link families to specialists.

The Tenovus mobile unit, which travels throughout Wales, will enable children and their families to have assessment and treatment for lymphoedema locally.

Melanie Thomas, the national clinical lead for lymphoedema in Wales, said:

“I am delighted we can now offer children with lymphoedema the same service we offer adults. This unique post will make a significant improvement to the current care and support offered to children and their families.

“I am extremely grateful to the Welsh Government in supporting this service and I look forward to seeing the benefits it will realise.”