I was employed to develop a lymphoedema service for lower limb primary and secondary non-cancer-related lymphoedema for patients in North Manchester aged 16 years and over in May 2018. This was initially a 2-year pilot that was initiated following a business case made by community nursing, after a huge gap had been identified in service provision for patients with non-cancer-related lymphoedema. The service has now been permanently commissioned.
Those familiar with the demographics of the area will be aware that it has high levels of social deprivation, unemployment and long-term mental and physical health conditions. Therefore, the service had to be developed to be as equitable and accessible as possible, which needed to include seeing patients with wounds, peripheral arterial disease, morbid obesity and those who had been deemed non-concordant with previous attempts at managing their lower limb lymphoedema.
Individualised care
Regular reviews of the caseload were undertaken as the service developed over the pilot period, and it became apparent that 25–30% of patients being referred had either a diagnosed learning disability (LD) or were educationally challenged. Improving access and care outcomes for people with LD is high on the NHS agenda and we needed to ensure that patients with LD and those who were deemed educationally challenged could access services and receive individualised care appropriate to their needs.
Patients' individual learning and educational requirements required the service to adopt approaches to promoting lymphoedema management that were both realistic and effective. Levels of LD ranged from mild to severe and each patient has unique personality traits and complexities that required lymphoedema management to be adapted to meet their specific needs. As a service, we consequently needed to adapt to using different approaches and ensure effective collaboration with the LD service to develop appropriate strategies and pathways.
Non-concordant
The patients with LD presenting at clinic were deemed to have a level of capacity that allowed them to live as independently as possible with support from key workers and the LD team. They had histories of lymphorrhoea, poor skin care and leg ulceration. Although they had been provided with compression hosiery in the past, they had not been wearing the prescribed hosiery and had been discharged from community nursing services and labelled as non-concordant with advice and treatment.
It was inevitable that, because these patients were, on the whole, not wearing their compression hosiery, their oedema would worsen over time and there would be issues with weight management and poor skin care, all factors that could lead to frequent bouts of cellulitis, ulceration and lymphorrhoea, resulting in the need to attend community treatment rooms to have their legs cleansed and dressed with conservative dressings.
Attendance of this patient group at the treatment room was ad hoc and many did not attend despite referrals and scheduled appointments, resulting in them being discharged with no community nursing services to follow up and manage their legs, leaving them vulnerable to cellulitis and at high risk of severe infection.
‘The patients with learning disabilities presenting at clinic were deemed to have a level of capacity that allowed them to live as independently as possible with support from key workers and the LD team’
The majority of referrals to the lymphoedema service were instigated by the treatment room nurses or the patient's GP and, when triaging the referrals, it was evident that these patients had been labelled non-concordant in the past, and regarded as erratic with regard to attending appointments. It was also noted that a proportion of patients had frequently attended the emergency department (ED) with cellulitis, which had resulted in them being either admitted as inpatients or referred to the community intravenous infusion team for antibiotic therapy.
However, what was concerning was that these adults were vulnerable and at high risk of infection, which can be fatal, so it was imperative that our service assessed these individuals to gauge their level of understanding of the risks they were exposing themselves to and that we identify how our service could help them to achieve a level of lymphoedema management that was realistic, safe and effective.
The fact that patients would take themselves to the ED when their legs were deteriorating showed a level of awareness: they understood that they needed assistance and that, when something was wrong, they needed medical attention. This was encouraging: it gave us a foundation to build on, for example to develop educational tools and strategies to support them with everyday leg care. We could provide them with basic lymphoedema management training that they would be able to follow with the support of their family, carers and key workers.
The service was aware that to achieve success with our LD patients we needed to develop close collaborative working with the city-wide LD service, which consists of LD nurses, occupational therapists, a psychologist, physiotherapist and social workers. The collaboration resulted in the development of tailored treatment plans and educational resources that has placed each LD patient at the centre of care and has provided valuable opportunities to share knowledge and contemporary health and social care initiatives pertinent to individuals with LD across the services. Box 1 lists some of the strategies we developed to support patients.
Box 1.Strategies developed to promote self-care and long-term management
- Initially offer longer, more frequent appointments to build a therapeutic relationship and to ascertain each individual's educational need
- Design individualised care plans: skin care, compression, exercise and weight management
- Design personalised leg-care plan tick charts together with the patient
- Develop an easy-read picture advice leaflet on how patients can look after their legs
- Ensure that there is continuous communication with family/carers/key workers to enhance self-care
- Provide family/carers/key workers with lymphoedema management training and treatment information
- Promote multi-agency working: GPs, the learning disability team and the lymphoedema service
Case study
This case study illustrates how adapting practices, collaborative working and providing support to LD patients to become more proficient at self-caring with their long-term leg care brings positive results and outcomes..
Robert Williams (not his real name), who is in his forties, was referred to the service by our colleagues in the community nursing treatment room for assessment of his bilateral lower leg swelling, superficial ulceration and lymphorrhoea, which had been ongoing issues for the preceding 2 years. At the time of referral, both his legs were being conservatively managed using absorbent pads and stockinette, and he was attending the clinic twice a week, although he sometimes arrived late or did not attend. Mr Williams was consequently deemed non-concordant and as not wanting to engage with services. However, if he was ever worried about his legs he attended the local ED.
Mr Williams had significant global developmental delay with moderate LD, and was unable to read and write. He was assessed as having sufficient mental capacity for independent management of his health care and financial issues; he lived in supported accommodation and had a key worker. He enjoyed going out every day to the local cafe and playing on his games console at home.
At the initial assessment at the lymphoedema clinic, Mr Williams was diagnosed with multifactorial secondary lymphoedema due to his high body mass index, unmanaged venous insufficiency, recurrent cellulitis and sedentary lifestyle. The condition of the skin on both legs was poor and he had severe hyperkeratosis to both legs, which he had been scratching and that had resulted in trauma. His vascular assessment showed no contraindications for the use of compression therapy; the plan was to commence him on compression bandaging and, once both legs had healed, he was to wear compression hosiery as part of his long-term management plan.
His key worker was provided with lymphoedema management education and was supported in encouraging Mr Williams to increase his exercise levels, have a healthier diet and to engage with our lymphoedema service.
Initially, things did not go to plan and Mr Williams would not attend some of his appointments, preferring instead to go to the cafe or remain at home, as was his prerogative. On these occasions, we would visit him at home and talk to him about making the right choices and the importance of keeping well. The need for a continued therapeutic relationship was paramount, as was removing the non-concordant label he had been given due to his lack of engagement with other services, since he preferred to prioritise his social life before his health.
Fast forward to the present day and Mr Williams continues to use compression hosiery, the condition of his skin is good and he continues to complete his daily leg charts and to engage fully with the lymphoedema service. He has had his ups and downs, as do many patients, and a care package has recently been initiated to assist him with washing and creaming his legs because this is something that he had been struggling with.
One of the most positive achievements—and one that we are immensely proud of—is that he has not attended the ED since coming under our service and, if he has any concerns, he asks his key worker to contact us. He has not had an episode of cellulitis for more than 12 months.
Our priorities
The importance of adapting lymphoedema management strategies to meet individual patient needs remains high on my priorities list and the service agenda.
As a service, we have shown that the lack of personalised care planning and understanding of the unique needs of this client group continue to be issues that need to be addressed and we will continue to endeavour to promote the importance of timely, effective and bespoke lymphoedema management for those who require that extra level of support and guidance.