Lymphoedema may be primary, because of a genetic abnormality, or secondary, which can develop in people who previously had a normal lymphatic system that has become damaged. Common causes of damage leading to lymphoedema are injury, obesity, reduced or lack of mobility, venous disease, or treatments such as radiotherapy and/or surgery. The condition can also have a negative psychosocial impact on affected individuals.
The Rochdale Care Organisation had identified that there was gap in service provision for non-cancer-related lymphoedema. Within the Rochdale area a small cancer lymphoedema service that ran one day a week from the local hospice was the only lymphoedema management service in the area. This is commonplace – lymphoedema services are unevenly distributed around the UK and are under-resourced, with some areas having no service provision at all. Access to good lymphoedema care is a lottery for patients.
A challenge
In 2017, I had been working as a tissue viability nurse for several years in another trust. I shared an office with a lymphoedema team and found that the subject piqued my interest. When a lymphoedema post came up in another area, I knew that I had to apply. This was a complete change in my nursing career. I enjoy a challenge and I absolutely love learning, so this was the ideal post for me. The new post was a lone lymphoedema practitioner role in a community care organisation with no previous lymphoedema service to inherit.
The new Rochdale Lymphoedema Service was put under the umbrella of the well-established local Tissue Viability Service. Although the services are separate and different, I felt supported within my new role.
Learning and networking
My first action was to source lymphoedema training as I had none, not even a sniff of the lymphatic system in my student nurse days! I completed training at the Lymphoedema Training Academy, which was invaluable. As well as gaining knowledge, I found it rewarding to be with peers since I was the only lymphoedema nurse within my care organisation. Secondly, I arranged to spend time visiting other lymphoedema services in the north west. This helped me network and forge good working relationships with other lymphoedema colleagues and professionals.
I consulted with compression therapy companies, joined the British Lymphoedema Society and attended study days, as well as the National Lymphoedema Conference and the British Lymphology Society conference, with the aim to get my new service known and out there.
I did a local scoping exercise to discover what knowledge the integrated care team had regarding lymphoedema. From reviewing the results of the scoping exercise, I held a lymphoedema/lipoedema study day for community and nursing home staff as I had identified a gap in awareness and knowledge about lymphoedema and lipoedema.
I have had fantastic support from my direct line manager and the assistant director of nursing within my care organisation. From having such marvellous support, I was able to develop the Rochdale Care Organisation Lymphoedema Service to what it is today. I was given the opportunity to purchase specialist equipment that can help manage lymphoedema, so that any patient currently on the lymphoedema caseload is able to access specialist massage and laser therapy.
In 2019, the local cancer lymphoedema service was transferred to the Rochdale Care Organisation and so I gained a combined cancer/non-cancer service and a part-time member of staff, a band 6 lymphoedema nurse, Jenna Storey.
A supportive service
Over the past 5 years I have built up an effective community lymphoedema service underpinned by standard operating procedures and pathways to ensure safe and effective patient care. I have done this by creating documentation specifically for assessing and reviewing lymphoedema and lipoedema patients. With the invaluable help of my colleague Jenna, we have developed a document (COMPRESS) that is a prompt for all health professionals. It aims to keep patients in compression therapy and thus prevent them stopping therapy unnecessarily.
I have established two support groups for lymphoedema and lipoedema patients. The support groups are informal and are used as an opportunity for patient education, support, and some fun. Guest speakers are invited to address the groups, where topics such as skin care, exercise, compression or cellulitis are discussed. There is always plenty of chat, tea, coffee and cake and, above all, support. Sessions often end with a game of bingo.
The Rochdale Lymphoedema Service is now a blueprint for other community services within the Northern Care Alliance because, with my experience, I have been able to advise and support new services.
Good lymphoedema management is fundamental in preventing ulceration and cellulitis, it improves mobility issues and fosters positive mental health. This is exactly what the Rochdale Lymphoedema Service strives to do, from our brilliant patient education information packs to the patient support groups and education/study days for staff and the COMPRESS tool.
I was pleased to achieve a Bronze Award in the Chronic Oedema Nurse of the Year category of the BJN Awards 2023.