Developing a lymphoedema service


Caitriona O’Neill, RGN, Clinical Lead for Lymphoedema, Accelerate CIC, in partnership with Homerton NHS Foundation Trust and City and Hackney CCG

Lymphoedema - the Cinderalla service?

In recent years, lymphoedema has come to prominence as a key issue for the NHS. Once considered a rare condition, recent estimates have suggested it may affect as many as 3.99 per 1,000 population [1]. Even factoring in more conservative figures, it appears that between 76,000 and 227,000 people in England are living with chronic lymphoedema, equating to around 700 in every CCG [2].

These numbers are likely only to increase in future, partly as a result of an ageing population, and partly as the result of longer survivorship in cancer and surging obesity rates. Lymphoedema correlates strongly with all three variables:

  • its prevalence increases sharply with age (rising to 28.6 per 1,000 in the over-85s) [3]
  • it often develops following cancer treatment, and
  • 63% of patients are obese [4]

This situation has been described as a ‘health and social care time bomb’ [5].

In September 2015, the British Lymphology Society submitted a proposal for a nationally commissioned specialised lymphology service. The hope is that lymphoedema will, for the first time, be recognised as a service that needs to be commissioned by each CCG. This would bring England into line with Wales, which has seen a significant reduction in patient waiting times since publishing its national lymphoedema strategy in 2009.

For the time being, however, provisions are highly inequitable and services are spread across a number of sectors, with many patients unable to access truly joined-up care.

For Accelerate CIC, an established specialist lymphoedema provider in Tower Hamlets since 2008, this situation has long seemed untenable. In October 2014, it launched a new model for providing Community Lymphoedema Services to patients across Hackney. This model, unique in its set-up, was the result of collaboration between City and Hackney CCG and the Homerton NHS Foundation Trust.

“Because Accelerate had the skill set around lymphoedema management, we became the prime provider and then subcontracted to the Homerton for the provision of two Champions,” explains Alison Hopkins, CEO of Accelerate .“This is unusual for our size, but it made sense that we are responsible for the delivery of the service, accountability to the CCG, and tracking all the outcomes.”

Previously City and Hackney residents could only access specialist services through GP referral to Accelerate’s Treatment Centre. The borough lacked a designated lymphoedema service of its own, meaning the arrangement was less than cohesive – if patients were being seen at all, it was by district nurses as part of their normal caseload.

“Patients in City in Hackney desperately needed support and help, and it was these patients who continued to request a local Lymphoedema service” says Caitriona O’Neill, Lymphoedema Care Lead Nurse at Accelerate.

“The team at the Homerton were concerned that they didn’t have the staff with the skills to be able to deliver that type of expert care, they were also not commissioned to deliver this type of service,” adds Siobhan Harper, Programme Director at City and Hackney CCG. “I felt strongly that we needed to address it, and come up with a new commissioning model.”

Having conducted an audit in 2012, Accelerate evidenced that the funding for lymphoedema care was being used in a less-than-focused way. Their new model was primarily a means of redistributing funds –taking the money that was then spread across multiple functions, and funneling it into a sustainable, embedded service.

“Because we had already had a relationship with Accelerate, we decided to formally commission this service for City and Hackney patients,” says Harper. “This developed into a model where two of the Homerton staff were seconded from the existing district nursing team into the Accelerate service, so they could act as Lymphoedema Champions.”

Under the new model, Accelerate took the lead but worked closely with the Homerton on pathway integration, service set-up, and training for the new Lymphoedema Champions.

These Champions were key to the overall concept. The idea was that, through undergoing the training with Accelerate, they would develop a knowledge base they could share among their nursing colleagues. While the nurses on the team did have a basic understanding of the subject area, misconceptions were rife.

“To begin with, I dithered – lymphoedema was linked to big legs, bandaging and heavy work,” says Stephanie Baho, one of the Champions. “I tell the nurses now, it’s not just legs; there are many different components to the care we do.”

This knowledge-sharing element, alongside strategic leadership, has worked well. Had the Homerton recruited external lymphoedema experts, the reduced need for training would have been offset against a lack of integration. The Champions, however, know the Homerton’s working culture inside out.

“Lymphoedema care isn’t an acute or tertiary service, so you can’t separate it off,” says Alison Hopkins. “People are being seen in a variety of different settings – either in a clinic, or at home, or with the district nursing team. Case management is also essential, so this has to be deeper than a superficial collaboration.”

Partly because of its recruitment model, the service was unusually quick to get underway. The only real stumbling block was the search for premises. Although the Homerton team had access to various community and hospital sites, most clinic rooms were either unavailable or unsuited to primary care. The location was therefore sourced from the local hospice, which had the added benefit of being easily accessible.

“If you were to replicate the model elsewhere, I would recommend looking at clinic venues very early on. We didn’t realise it would be an issue to find a site,” Caitriona O’Neill remarks.

“Once we established the clinic site, and the momentum started, things pushed ahead quickly,” says Leanne Jenkins, Senior Nurse Adult Community Nursing at the Homerton. 

The changes to patient care were obvious and immediate. Previously, they had been seen by nursing teams with a notably conservative management style. The more severely afflicted were visited several times a week, week in week out, and would remain on the caseload on an indefinite basis.

Under the new model, however, they have been able to receive intensive, specialised care. This promotes swift turnaround, frees up district nurses’ time, and – most importantly – improves their quality of life.

“Now we give patients an end date – you’ll come into the service, you’ll also leave,” explains Louise Egan, Divisional Head of Nursing at the Homerton. “It’s no longer about seeing one patient four times a week and making no impact.”

Accelerate has tracked various KPIs to ensure this pattern is more than just conjecture. Although there is no national benchmarking around lymphoedema, the team has created its own databases and is quantifiably demonstrating patient outcomes. In particular, through capturing information around disease aetiology and severity, they will be able to determine whether patients are improving over time.

The early findings look promising. Since the service began, referrals have been steadily increasing, both from GPs and from other departments such as tissue viability and podiatry. By the end of 2015, the caseload in City and Hackney stood at 334, more than double what was achieved in that timeframe for Tower Hamlets.

One way of determining the impact at this stage is to compare rates of cellulitis in the years pre- and post-intervention. A potentially serious complication of lymphoedema, cellulitis can occur when the swollen tissue becomes infected. Accelerate found a 92% drop in cellulitis episodes, and a 90% drop in those requiring hospital admission, providing a dramatic saving to the local health economy. They also saw a reduction in lymphorrhoea (“leaky legs”) in 96% of patients within two weeks.

At the other end of the spectrum, they managed to capture a patient group whose symptoms were less severe, enabling them to address the condition in its early stages. According to one estimate, for every £1 spent on treatment to prevent further swelling and prevent further infection, around £100 is saved in reduced hospital admissions [6]. This provides a compelling business case for early intervention. 

“It’s a long-term lifelong condition so you want to get involved as early as possible, so patients don’t have complications,” says Caitriona O’Neill. “It’s much more cost-effective to do that, and you also enable the patient to self-manage and take a proactive part in their condition.”

On the basis of the last two years, the service has both improved the patients’ quality of life and saved money for the CCG, as well as reducing repeated ineffective care.

Patient satisfaction remains high. In a survey from June 2015, which had a 93% response rate, 100% of patients rated their treatment as excellent, 100% felt included in their care planning and 100% felt their views were heard.

These results have been heartening for all involved. Given current funding challenges, it is natural for each team to want to protect its own pot of money rather than making short-term individual sacrifices in the pursuit of a long-term collaborative goal. Inevitably, partnerships of this kind will involve an element of risk.

There is also the chance that, once a community nurse has been trained up as a lymphoedema specialist, he or she is not likely to return to being a generalist. Here, it’s important to view any early losses through the prism of staff development. Following their initial training, the Champions have worked largely independently with ongoing mentorship, meaning they have been able to excel quickly.

“You can’t limit people – you’ve got to allow them to have their opportunities because that’s what makes your workforce strong,” Leanne Jenkins points out.


With the service fully established, funding secured, and a steady flow of referrals, Accelerate and the Homerton are asking the model can best serve patients in the years ahead.

“In the real world, you have to ask what do you do when issues manifest themselves,” says Alison Hopkins. “There isn’t always a plan B, so we have to be realistic about what’s possible. We’re looking at the staffing and the skill mix, and having conversations about what the following year might look like. The commissioners are interested not just in delivery of the contract; they’re interested in the outcomes of the delivery.”

Siobhan Harper, for her part, is more than satisfied with the outcomes to date.

“When you look at the individuals involved, they’re all high calibre people who have a passion for what they do. Nationally there are few lymphoedema services available – it’s a marginalised area – so it’s really good to have this for our residents,” she says.

As the gap in lymphoedema services becomes more widely recognised, Accelerate feels their model may prove a useful one to emulate.

“I think the model for lymphoedema should always be comprehensive, and it has to be done in some sort of partnership with community nursing,” says Caitriona O’Neill.

“There are some key features that are replicable but after that, it’s about personality and drive,” adds Alison Hopkins. “It’s having that fundamental belief that things can be different for our population and it can work.”