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Lymphoedema in the spotlight

The plight of people in Ireland with lymphoedema, a condition of localised fluid retention and tissue swelling caused by a compromised lymphatic system, has made the national news on two separate occasions since the beginning of the year. In January, Ombudsman Mr Peter Tyndall called on the HSE to change how it administers the Treatment Abroad Scheme (TAS) because it is too complex and difficult for patients to access. One of the complaints Mr Tyndall received on the subject was from Ms Karen Brennan, who was diagnosed with lymphoedema after receiving cancer treatment. Ms Brennan was told she was ineligible for the TAS as the treatment she was seeking was available in Ireland, even though this was not the case. The decision came despite her receiving funding on two previous occasions under the TAS.

Also, in February, RTÉ Investigates reported how a patient, Ms Alison McCormack, was misdiagnosed with non-invasive breast cancer – when the cancer had been invasive – and subsequently developed lymphoedema as a result of the more aggressive treatment that was necessary.

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Ms Nina Murray

Delays

These two patient stories come at a pivotal time for people with lymphoedema. A new national model of care for lymphoedema services is at its penultimate stage, awaiting sign-off at the HSE and this is hoped to be completed by the end of March. As previously reported in the Medical Independent (MI), the publication of the report by the working group charged with developing the new model is long overdue. Originally, it was hoped the report would be finalised by April 2017. The date was pushed back to the summer, and then to the end of 2017. So almost a year after it was intended to be finished, the model of care is only now nearing completion. The delay in finalising the report is just one of the frustrations endured by people with lymphoedema. The patient advocacy organisation, Lymphoedema Ireland, had been unable to find out the contents of a previous review into services. However, Patient Advocacy and Service Improvement Lead with Lymphoedema Ireland, Ms Nina Murray, told MI that despite the delays, the fact that the model of care is almost complete is very welcome.

“Where they have been delayed, we have been reasonably satisfied that is for good reason,” Ms Murray said.

Current services

There are an estimated 12,370 people in Ireland living with lymphoedema. Although the condition is often caused by cancer treatment, it also affects a number of non-cancer patients as a result of genetic factors. The number is expected to increase due to an ageing population, increase in cancer diagnosis, and survivorship and obesity. In an outline of the recommendations understood to form part of the new model of care, which MI has seen, it is acknowledged that current services are inadequate and inequitable. The working group found that while there are 26 services in the country (14 in acute services and 12 in primary care), only three have enough dedicated hours to provide comprehensive treatment, even though there are qualified specialist therapists available. Of these three full-time services, only one is for cancer-related lymphoedema. Almost half of these services are only for cancer-related lymphoedema. For example, two of the lymphoedema services provided by Community Healthcare Organisations (CHOs) are reserved for patients who have had cancer. The working group found that treatment provided is not standardised and there are no national key performance indicators (KPIs) to ensure patient safety, efficiency and best practice.

Blue print

The development of a national framework for lymphoedema is being led by the HSE. The working group is headed by Mr Brian Murphy, Head of Performance, and Ms Kay Morris is project manager. The National Cancer Control Programme is represented on the group by Dr Marie Laffoy and Ms Hilary Murphy.

The model of care will provide a blueprint and makes recommendations to develop integrated lymphoedema services to ensure standardised, safe, high-quality services for prevention, screening and early detection, comprehensive assessment/treatment and education. The recommendations are based on international best practice and population demand. It is understood the model of care will recommend a hub and spoke structure with one specialist centre in each CHO; integrated with acute, high-risk and palliative services.

The specialist centre will provide assessment for all types of lymphoedema, comprehensive treatment for complex patients and education. 

The ‘spoke’ services will provide non-specialist maintenance treatment and support for self-management at local primary care (PC) centres.

The education programme will improve awareness of lymphoedema, prevention and early detection in high-risk areas and follow international guidelines to maintain competency for non-specialists and specialists.

National guidelines are recommended for standardisation and developing KPIs to ensure best practice, patient safety, efficiency and value for money.

Savings

In addition to the benefits for patients, the working group believes improving lymphoedema services will bring cost savings to the health service, even though initial investment will be required. The cost of providing a comprehensive service nationally is €3.25 million. The working group also estimate the cost of implementation to be €700,000 annually for the first two years.

Ultimately, however, there are plentiful opportunities for savings. For instance, if services improve there will be a reduction in the need for accessing the TAS and EU Cross Border Directive, which cost €45,602 in 2016. There will also be a reduction in the need for contract services by private therapists, which cost three times more than a HSE therapist and a reduction in the need for complex treatment due to prevention and early detection. 

The estimated cost in therapist’s time for complex treatment annually is €1,980 compared to €66 for mild lymphoedema. The new model would also lead to a reduction in the incidence of cellulitis. It is estimated that 29 per cent of lymphoedema patients have cellulitis at least once a year. Of those patients, 22 per cent will be hospitalised. The average length of stay for cellulitis patients is 12 days due to complexity. In the current population this would equate to an annual cost of €9,468,000 for lymphoedema patients due to cellulitis. It has been demonstrated that a comprehensive lymphoedema service can reduce these costs by 89-100 per cent in one year. This would produce savings of €8.5-9.5 million per year in reduced hospital admissions annually. This does not include the potential savings from patients that are managed for cellulitis in the community.

There would also be a reduction in cost due to lymphoedema-associated leg ulcers. It has been demonstrated that 42 per cent of patients with leg ulcers also have lymphoedema. Estimates show there are 2,141 people with leg ulcers, which equates to 899 people with associated lymphoedema. Current research in a population of 842 patients with leg ulcers has demonstrated annual reductions in public health nurse visits of €70,500 and dressing costs of €37,000 due to correct oedema management.

From the above figures it can be estimated that there would be overall savings of €4.702 million annually in the first two years and €5.402 million annually in subsequent years. This does not include cost savings due to prevention and early detection, which are difficult to quantify. There are also cost savings in reduced use of bandaging and expensive compression garments and a reduction in complications.

Next steps

Although Ms Murray is very positive about the new model of care, she said Lymphoedema Ireland still has some concerns around the implementation process. “The big question for us is, what happens next?” Ms Murray told MI.

“Who ultimately owns, or has responsibility for driving it forward within the HSE in terms of implementation? What does implementation look like? So, I think I would be quite concerned to be honest that we haven’t got a sense of ownership of this within the HSE.”

One of the problems is the lack of clinical leadership with regard to lymphoedema, as the condition does not come under one single specialty.

“I think the report has certainly identified that,” according to Ms Murray.

“There is nothing in the report, as I would see it, that we would be concerned about. They seem to have identified all the problems that we would have, which is a great basis to start from. One of the things in that context that they have identified is that there isn’t a Clinical Lead and there is this ad hoc approach to providing a very low level of services, a low quality services that are available at the moment.”

Ms Murray also said that even if the recommendations are fully implemented, there will probably still be a need for patients to access the TAS for more complex treatment requirements.

“My understanding is the working group are not recommending we would have a complex centre of excellence necessarily,” Ms Murray stated.

“We would have a clinic where there would be complex cases, but not the very significant interventions that are available in some European clinics. I think quite possibly in the absence of a service like that here, because the population probably wouldn’t support it, I think there would continue to be a case to access those services. Once patients from our perspective have access to the treatments they need, I think we would take a very balanced view and say something as complex as that in the first instance, you want to be treated in a place that knows what it is doing and have enough experience of doing it to give you that confidence. And if that means it can’t be delivered in Ireland then that’s okay. There is no excuse for not having basic services, for having that early intervention and all of the things we are lobbying for in terms of day-to-day services.”

A HSE spokesperson told MI that they could not comment in detail, as the model of care has not yet been officially completed.

“The whole public service nationally has been surveyed with the greatest need assessed for non-cancer patients,” according to the spokesperson.

“As a result the decision has been made to broaden the scope of the service to include non-oncology patients… As such the implementation and subsequent funding of the new service would be led by the HSE.”

Lymphoedema treatment

The recommended treatment for lymphoedema is Complex Decongestive Therapy (CDT). It is also known as Decongestive Lymphatic Therapy (DLT).

CDT is not a cure for lymphoedema, but it can help to control the symptoms of swelling and pain. CDT is made up of four components of treatment:

Manual lymphatic drainage (MLD) is a specialised massage technique designed to stimulate the flow of fluid and reduce swelling.

Multilayer lymphoedema bandaging (MLLB) uses bandages and compression garments to move the fluid out of the affected limb.

Remedial exercises are designed to activate the muscles in the limb to improve lymph drainage. 

Skin care is required to prevent infection.

In some cases surgical intervention is required.

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