Patients living with a little known long-term condition that causes painful swelling and restricted mobility have been benefitting from a new joined up service.
The West Suffolk Alliance Lymphoedema Service, which is run by West Suffolk NHS Foundation Trust and Suffolk GP Federation, helps patients to manage their condition and lead independent lives.
It has been running since October last year and will officially launch later this month (March) to coincide with a Lymphoedema Awareness Day run by Lymphoedema Support Suffolk.
Members of the public and healthcare professionals keen to find out more about the condition are invited to attend an afternoon event on Monday, 19 March from 2.00pm to 5.00pm at the Moreton Hall Community Centre, Bury St Edmunds.
The West Suffolk Alliance Lymphoedema Service and Lymphoedema Support Suffolk will be on hand to provide information about the condition, and people can also chat to other healthcare providers and support groups.
Lymphoedema is a chronic condition that causes swelling in the body’s tissues. It can affect any part of the body, but usually develops in the arms or legs, making it difficult to move.
Ann Byrne, 53, from Weeting, near Brandon, who has been living with lymphoedema since she was 15, said: “It affects both my legs, my left arm and the left side of my abdomen. I compress it with bandages but it’s still very difficult and I have problems moving as a result. Just knowing the service is there has been a great relief. The support and advice that they’re able to provide is a huge help.”
Lesley Bird, 68, from Dullingham, near Newmarket, who was referred to the service by her GP because of swelling in her legs, said: “Lymphoedema is largely unknown and we need to do all we can to raise awareness. That’s why this service is so invaluable to the community. The whole team have been incredibly supportive in helping me to manage and understand my condition.”
The new service is based at Drover’s House in Bury St Edmunds. It is led by a lymphoedema nurse consultant who is supported by two lymphoedema practitioners and one healthcare practitioner.
Treatments are planned and agreed with the patient and include lymphatic drainage, multi-layered bandaging and compression and advice on exercise, positioning and skin care.
Referrals are accepted from all registered healthcare professionals across west Suffolk – although patients are also accepted from Ipswich.
Diane Cheevers, nurse consultant and service manager with the West Suffolk Alliance Lymphoedema Service, said: “We’re delighted to have this partnership in place. Feedback from patients has been very positive and it’s a great example of how healthcare providers can work together to provide patients with the best possible care.
“Lymphoedema can be an awfully debilitating condition and can have a huge impact on someone’s quality of life – leading to increased anxiety and interfering with work, hobbies, relationships and general wellbeing.
“But by planning treatment in partnership with patients we can identify many self-help factors that allow people to manage their condition and live a healthy and independent life.”
Louise Goode, physiotherapist and specialist lymphoedema practitioner, said: “We are able to offer a multidisciplinary team approach to our lymphoedema patients, with physiotherapists, occupational therapists, nurses and rehabilitation assistants’ involved in the service.
“We help address issues with mobility which often becomes an issue for patients, so an exercise component is a large part of patient care and self-management, as well as a holistic assessment of how we can support patients to manage their condition.”
Gwen Williams, Secretary of Lymphoedema Support Suffolk, which provides reassurance and advice on living with and managing lymphoedema, as well as promoting better awareness amongst healthcare professionals, said: “An alliance of services providing a whole range of diagnosis, treatments, care and advice is an invaluable asset to both patients and the NHS alike. The team’s proactive approach is already proving of benefit.”