One of the major concerns for all people with lymphoedema is the constant risk of developing infection (cellulitis). Treatment of cellulitis in lymphoedema is very important, not only because the patient may become very ill and in extreme cases require hospitalisation, but also because lymph drainage routes risk being damaged further, in which case, the swelling may worsen and permanent skin change, e.g. thickening, may result. This does not help the longterm control of the condition.

Patients need to fully understand the risk factors, quickly recognise the onset of infection and know when to seek medical help. However, inappropriate prescribing of antibiotics by GPs has long been a major problem for some patients and can cause considerable distress and unnecessary suffering.

The LSN has regularly received letters, emails and telephone calls highlighting the difficulties patients experience in obtaining a correct dose of antibiotics, not only in an initial attack of cellulitis, but in obtaining "in case" antibiotics and prophylactic (long term) antibiotics for use in recurrent cellulitis. It was more than apparent that a new LSN fact sheet was required, aimed at GPs and other medical practitioners, in the hope that this unacceptable situation could be improved.

With this in mind, LSN Chair, Anita Wallace, co-ordinated a meeting between Professor Peter Mortimer, Dr Christopher Cefai (Micro-biologist), Dr Vaughan Keeley, Professor John Welsh and other medics held at the British Lymphology Society (BLS) conference in October 2004. The purpose of this meeting was to gain an agreement by the specialists on the appropriate management of cellulitis in lymphoedema patients.

Following an initial consensus, the draft document was then circulated for wider consultation. In order to give the final document credibility within the medical profession it was vital to gain as wide a consultation as possible, because little hard evidence has been published and protocols vary in different hospital trusts. A second meeting was planned to take place at this year's BLS conference, for further discussion and to incorporate the comments and suggestions received. The outcome of this meeting was a final consensus document that makes recommendations about the use of antibiotics in lymphoedema, and advises when admission to hospital may be indicated. This document will be jointly owned by BLS/ LSN and will form the basis of a new LSN fact sheet aimed at doctors rather than the patient.

In addition, an audit will take place to evaluate the effect of this information. It is hoped that in the long-term, any problems that patients currently face will be greatly reduced.We are very grateful for the information that many of you gave in your replies to the LSN 'Patient Experience' questionnaire about your experience of cellulitis, as this will help to form a base line for the audit. It is also possible that in the future, the LSN will contact some of you for further information about your experience.

The LSN is a full research partner in the National Lymphoedema Framework Project. As part of our work within this project, the LSN developed a patient experience questionnaire which was sent out from the LSN office to all our members in March 2003.We asked you about your experiences of living with lymphoedema, and how you felt about the treatments you had used. The analysis has been carried out by LSN researcher, Ros Lam, using computer programs at the Centre for Research and Implementation of Clinical Practice, where the project is based. The analysis of this survey is enclosed with this issue of LymphLine.

We are very grateful to all the 1449 LSN members who returned their questionnaires. We think you will agree that the results are very interesting. The comments you made about your compression garments have been passed on to the manufacturers, who will hopefully take note of the views of such a large number of their customers.

The findings regarding the particular difficulties for primary lymphoedema patients in accessing treatment confirm what we already knew and have been highlighted in our recent Primary Care Trust (PCT) campaign. Having been able to send the facts and figures to the PCTs has added strength to our case!

Working alongside its successful Political Lobbying Campaign, the LSN launched a new campaign targeting all Primary Care Trusts (PCTs) and Strategic Health Authorities (SHAs) in October 2004. The British Lymphology Society (BLS) and Professor Peter Mortimer, the Charity's Chief Medical Advisor, gave their full support to this course of action. The LSN also secured the highly influential endorsement from three of the Royal Colleges, the support of two of the UK's leading cancer charities, the Association of Chartered Physiotherapists in Oncology and Palliative Care and the Long-term Medical Conditions Alliance (LMCA).

An initial letter, signed by Anita Wallace and Professor Peter Mortimer, was sent to all PCTs and SHAs; together with a copy of the Lymphoedema Framework Project journal, which has published Standards of Practice for PCT based lymphoedema services; the analysis of 1400 'Patient Experience' questionnaires, completed by LSN members, and the logos and quotes from supporting organisations. A Draft letter was also produced for all LSN members and supporters to send to their local PCT. In addition, the BLS also wrote a letter to the PCTs in support of the campaign.

A further letter, approved by Professor Mortimer and signed by Anita Wallace, was sent in May 2005, together with a copy of the LSNs EDM (no.107) and a list of its 119 signatories, to highlight the level of support gained from Parliament. The issue of the current discrimination between service provision for cancer and non-cancer related lymphoedema patients, was also strongly underlined. As with EDM (no.107), the latest EDM (no. 201) will also be sent to the PCTs later in the year.

A brief summary of the replies currently received from PCTs by the LSN and its members indicate that some PCTs appear to be more prepared to acknowledge the inadequacies of services in their area to patients, rather than to the LSN.

Some PCTs were unaware of current service provision in their area and highlighted services that no longer existed, and in some cases, quoted services that never did exist. Although some PCTs acknowledged there was no service provision within their trust, they did refer patients to services outside their area.

However, there is some good news. Seventeen PCTs are currently taking part in the National Lymphoedema Framework Project. Some PCTs have developed new services, some of which are being co-ordinated across more than one PCT. Several PCTs said local Cancer Networks are now undertaking mapping exercises to clarify the pattern of services used and identify unfulfilled needs. Some are trying to develop new services, and although some of these are initially just for cancer patients, they are hoping to extend these services to include non-cancer patients.

In addition, as the level of awareness has risen within Parliament, due to LSN lobbying, there has been a direct effect in some constituencies. LSN members have contacted their MPs, and this has sometimes led to the MPs taking up the issue with PCTs on behalf of their constituents, resulting in the profile of lymphoedema being raised within the PCTS.

The LSN has once again been successful in securing a new Early Day Motion (EDM) to further highlight the Charity's on-going Primary Care Trust (PCT) Campaign. This EDM raises the thorny issue of the unacceptable discrimination between current service provision for cancer and non-cancer related lymphoedema patients.

Shadow Minister and MP for East Worthing and Shoreham, Tim Loughton, tabled EDM no. 201 on behalf of the LSN. Other sponsors were Labour MP for High Peak, Tom Levitt; Shadow Secretary of State for Health, Andrew Lansley; Shadow Ministers, Simon Burns and John Baron, and Liberal Democrat MP for Lewes, Norman Baker.

Although the emphasis on this occasion is centred on non-cancer related patients, the LSN is fully aware that the level of treatment offered to some cancer related patients is sadly lacking and in some cases, not available at all. The LSN is fully committed to campaigning for better treatment for all patients; however, it is impossible to address all of the issues surrounding all lymphoedema patients, at one and the same time.

The purpose of this EDM is to highlight the level of support the LSN and its members have gained from Parliament and a copy will be sent to the PCTs when the EDM ceases to exist in November. At the start of the Summer recess it had attracted 138 cross-party signatures.

This EDM pays tribute to the work of the LSN in raising the profile of the desperate plight of thousands of sufferers in the UK and calls upon the Government to work closely with the LSN to ensure sufferers are able to access readily all necessary prescribed treatments. At the start of the Summer recess it had attracted 56 cross-party signatures.

We are delighted to bring you this progress report on the National Lymphoedema Framework Project. You will remember that the project is a major initiative led by the Centre for Research and Implementation of Clinical Practice (CRICP) and involves a partnership with the Lymphoedema Support Network (LSN), specialist lymphoedema practitioners, general clinicians, health care organizations and the wound care and compression industry. The aim of the project is to establish and evaluate a national provision of integrated Primary Care Trust (PCT) based lymphoedema services with access to specialist practitioners and improved care and management in the community. The project began in the spring of 2002 with one PCT in South West London and was last reported in LymphLine in the Autumn of 2003. Since then a number of key developments have been completed, aimed at supporting the implementation of the framework on a national basis.

A national framework of lymphoedema management
Invitations to participate in the National Lymphoedema Framework Project were sent out to every PCT in England during December 2003 and a briefing day was subsequently held, at which the project was explained in detail. The first group of six participating sites (9 PCTs) attended an introductory day on 25th June 2004. This was the first of a series of one-day workshops provided to support the sites through the project. Interest has been considerable and it became necessary to establish a second group of sites (7 PCTs) that will join the project during 2005.
The first group of sites is currently involved in planning their respective services and preparing for the collection of research data. As expected, progress differs from site to site depending on local circumstances. A very important feature of the project is to record the different approaches taken by the sites to implement their lymphoedema service so that we can build up a picture of how this major change has been managed across all the participating sites.

Communicating the project
An important aspect of the project is to communicate what is being achieved and to inform others in the field about the development of lymphoedema care in the UK. Members of the research team have given talks and presentations to a number of bodies that include patient groups, cancer networks, the Vascular Society, the Compression Club, professional courses in lymphoedema, as well as national and international conferences. The research team will be presenting a series of papers at the International Lymphology Society congress in Brazil, in October 2005.

A focus document on bandaging
A significant development to emerge from the project is the publication of a focus document on lymphoedema bandaging. This is the first time such a document has been published that deals with this important aspect of lymphoedema management. The lead article provides an account of the role of the Lymphoedema Framework Project in achieving a consensus on lymphoedema bandaging and is written by members of the research team. The focus document will be truly international with an editorial board and contributors from a number of countries who are well known in the field and it will be published in several languages. The document is to be launched at a special plenary session of the European Wound Management Association conference in Stuttgart in September 2005. A second focus document that will deal with the correct use of hosiery is in the planning stage.

A best practice document
A document that sets out best practice for the management of people with lymphoedema in a primary care trust will be published as the next edition of the Lymphoedema Framework Journal. The document underpins the national standards for lymphoedema care and aims to provide practical guidance to health care professionals who care for people with, or at risk of developing, lymphoedema. This important piece of work is the product of a major process of consensus and has been distributed widely, to patients and health care professionals, for appraisal and comment. In addition, an international advisory board will review the final version prior to publication.

Education and training
The education and training of health care professionals is a key component of the project. Good education and training is essential if the care and management of people with lymphoedema is to meet the national standards set out as part of the framework. It is also necessary to ensure that sufficient specialist practitioners and key workers are available in the future. The project is currently looking at the competencies needed for practitioners to function effectively at district nurse, key worker and specialist practitioner levels in order to inform the development of appropriate education courses.

Support from industry
Continued support from the wound care and compression industry is vital for the continuation of the project and we are extremely grateful to them for their commitment to this work.

Editors note:
The Early Day Motions no 28 and no 159 attracted substantial cross-party support and between them gained 244 signatures before they ceased to exist at the end of the Parliamentary session last November.