Service Update – December 2013
Suffolk GP Federation Lymphoedema Service
Introduction
Lymphoedema is a chronic and progressive condition: it is frequently undiagnosed in patients
with a cancer diagnosis and in patients who have suffered with long term symptoms for many
years as a result of a missed diagnosis. Lymphoedema is characterised by chronic swelling
caused by the accumulation of lymph in the soft tissues. It usually affects limbs and occasionally
the quadrant of the body adjacent to a swollen limb. Genital oedema can affect both men and
women alongside head and neck oedema seen as a result of trauma or cancer or cancer
treatment. If not treated, Lymphoedema can result in many complications that can lead to
hospital admission which long term, warrant a higher level of specialist intervention. Alongside
the latter, both physical, psychological and quality of life issues have implications for the
individual who has Lymphoedema.
This Service Update aims to outline the development of the Suffolk GP Federation
Lymphoedema Service which has been operating since September 2012.
Network Services and Strategy
Many government initiatives identify the need for physical and psychological interventions
required for Lymphoedema management. The NHS Cancer Plan (2000) addresses inequality in
service provision and proposed that all patients with a cancer diagnosis receive seamless
accessibility to Lymphoedema care/management. The international Consensus Best Practice
for the Management of Lymphoedema (BPFTMOL) (2006) has also allowed services and
commissioners clear pathways and direction in effective identification of patients at risk of
Lymphoedema.
Since the Suffolk GP Federation has been commissioned to provide the service (Any Qualified
Provider (AQP) we have seen an increased number of referrals particularly in the last few
months. The service is now seeing more complex patients in line with the specialist nature of
the skills of all of the Practitioners providing assessment, treatment decisions and treatment
pathways. Long term management options in line with workshops, psychosocial support, and
exercise/movement and compression hosiery have been evaluated as a valuable resource in
empowering patients to be become expert at managing a chronic lifelong condition.
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Epidemiology
It is estimated that around 100,000 people in the United Kingdom suffer with Lymphoedema
(Moffatt et al 2003).
Various services and organisations across the United Kingdom have carried epidemiological
studies; this has identified Lymhoedema as a significant but unrecognised problem. As a result
deficits in care and management of Lymphoedema have been identified with 36% of people
receiving no treatment. Studies have also emphasised that treatment delivery has been and
remains fragmented with patients not always being able to access specialist care/management.
Case of Need
The effectiveness of providing complex management for patients with both primary and
secondary Lymphoedema has been measured using specific performance indicators within the
service:
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Deliver specialist Lymphoedema management/care
Plan and organise management of complex oedema
Increased liaison and engagement of key Health Care Professionals
Contribute and participate in developing the service in view of any research projects, or
evidence base
Demonstrate and participate in, and undertake any clinical audit or patient surveys
The ability to respond and to change and take innovations to move ideas forward in
order to improve service delivery
Working in collaboration with others
In line with the contractual agreement access to the service and specifically treatment is
restricted to a set number of treatments. The increase within Individual Funding Requests has
evolved due to the complex nature of the condition we are managing, and the pure chronic
nature of this condition that demands lifelong management.
Despite the increased collaboration and education taking part across West Suffolk there
remains very limited specialist knowledge to continue care/management of this chronic
condition. In working in collaboration with other Lymphoedema Specialists within West Suffolk;
Suffolk GP Federation have maintained and ensured that a clear defined pathway of
care/management for all patients with Lymphoedema is accessible and practical to meet the
demands of such a chronic condition locally has maintained a standardised treatment that is
very clear and comprehensive as set out in the BPFTMOL. Comprehensive skills and training
allows standards and protocols to be followed clinically in line with the management of
Lymphoedema both locally and nationally.
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It is here that our service maintains a comprehensive clinical assessment proforma; identifying
both the medical and lymphoedema assessment that are both paramount to the clinical
diagnosis. International ‘Staging’ alongside the five “S” scores (skin, shape, size, sub-cutaneous
tissue and swelling) are indicative to the classification of severity and treatment decision.
As part of the assessment process, we consider other clinical criteria which fit into the process
allowing a comprehensive treatment package unique to the individual patient’s needs. We work
alongside the Multi-disciplinary team and refer to the appropriate Health Care Professional in
order to gain the optimum treatment outcome for the patient holistically. We follow the clear
management guidelines of Lymphoedema as set out in the BPFTMOL. How we address just
treatment using Manual Lymphatic Drainage (MLD) and Simple Lymphatic Drainage (SLD) is
addressed as to the psychological and symptomatic benefits and to the indications for use as
set out in the BPFTMOL. There remains a wealth of clinical opinion supporting the use of MLD
in treating patients however; there is little research data to conclusively support its use as a
stand alone treatment. We teach SLD as part of the patient’s self-management along side the
five cornerstones of self management (Skin, positioning, exercise, SLD & compression hosiery).
Modified treatments for long term or palliative use are usually outlined with an Individual
Funding request due to the unique nature of the need for on-going treatment.
Our service evaluation and electronic data evidence proves excellent treatment outcomes and
improvement in patients general wellbeing, improved quality of life and maintenance of a
chronic condition.
Long term management
As part of this service update it is here that there is an unmet need and highlighted
discrepancies that have been uncovered in discharging our patients into the community for ongoing specialist management.
Our service provides treatment under the contract for what is described as an acute episode of
management. In all of the evidence available there is no evidence to support an acute episode.
Lymphoedema is chronic, debilitating and life long. Volume and shape can change rapidly due
to many clinical issues however; the nature of the condition is damage to the lymphatic system
that cannot be repaired.
Since the service has been up and running the evidence to support the current situation in
discharge is that none of the GP localities nor District Nursing services have any clinical
expertise that have the knowledge and skills to carry out complex measuring for compression
hosiery and monitor total volume as way of changes in volume and shape. Therefore, we have
no safe practice to discharge a patient into with no grounded Health Care Professional Skilled to
the need across West Suffolk.
Specialist and higher levels of roles in managing Lymphoedema has been defined as a
specialism due to the required complexity of knowledge and skills beyond that of a generalist
practitioner. Agenda for Change reforms arose from the NHS Plan that looked at improving
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services and developing a skilled and flexible workforce. This reform allowed the NHS
knowledge and skills Framework development. It is this unmet need that suggests defining a
desired service that addresses this issue and by further investigation and consultation that
essential securing and funding of a proposed service is commissioned to support this relevant
area of need.
Making the case
Suffolk GP Federation understands the financial climate affecting services provided by the
commissioning team. However, to fully address this issue we propose that by presenting a
model of care that best meets the local care needs of patients with both primary and secondary
Lymphoedema can fulfil this area at risk.
By underpinning this new service delivery/model of care focused on a key/link worker role then
we propose a consultation and partnership that has a shared vision in developing service that
will address this need. By providing you with the evidence and development proposal it is hoped
that you will invite us to provide you with the appropriate data requested for consideration of a
re-measuring/discharge tariff.
On-going Plans for 2014
As part of the National Awareness week in September 2013 we raised the profile of our service
both locally and nationally as an AQP provider for West Suffolk. In 2014 we aim to achieve a
greater influence on the community as well as all Health Care Professionals locally.
We aim to achieve setting up a patient support group that gives patients and their careers the
external support that they need when managing such a chronic condition. We have seven steps
that will take us forward in planning and setting up of this group which is planned for the second
quarter of 2014.
Conclusion
This paper highlights the need to expand the lack of service provision for discharged patients
with both primary and secondary Lymphoedema allowing an improved cohesive package of
care under the umbrella of specialist lymphoedema practitioners.
Allowing this proposal to go-ahead provides equal access to specialist management there by
discharging patients into a safe co-ordinated practitioner that has specialist skills, knowledge
and experience.
Through consultation we hope to achieve the full potential of our service taking a lead position in
providing this gap in patient services locally.
For further discussion I’m happy to answer any clinical queries. Please contact me on my
mobile number: 07739 326069.
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Diane Cheevers
Lead Lymphoedema Nurse Specialist.
Suffolk GP Federation
December 2013
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