It has been a busy and challenging year, but we are delighted to update you on the progress of the Lymphoedema Framework Project (LFP). Partnership working with the Lymphoedema Support Network (LSN), the British Lymphology Society (BLS), industry and health care organisations is continuing to drive the work to provide equitable and accessible care for all patients with Lymphoedema. For those who are unfamiliar with the project, it is a major initiative led by the Centre for Research and Implementation of Clinical Practice (CRICP) and involves a partnership with the LSN, specialist lymphoedema practitioners, general clinicians, health care organisations and the wound care and compression garment 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. However, the work of the LFP has been continuing nationally as well as progressing in the international arena.

National Framework Project

Preliminary analysis of the work in the pilot site has shown improvements due to the implementation of the PCT service. There has been considerable reduction in the incidence of cellulitis in patients who receive care, and in the group of patients who were followed for one year, there were no admissions to hospital for cellulitis. Additionally, there have been significant improvements in the quality of life of patients following implementation of the service, particularly in the areas of physical functioning, socialisation and bodily pain. The Wandsworth Pilot Study has therefore indicated the potential benefit of adopting Best Practice within a total service.

There are now other participating PCTs throughout England who are currently implementing services based on the National Standards for Care and the Best Practice for Management of Lymphoedema. The sites are at various stages of data collection, with services being configured to meet local needs.

The work of the project has come to the attention of the NHS Institute for Innovation and Improvement. This institute is particularly interested in developing and spreading new and innovative ways of working. They have been impressed by how our partnership with the LSN has used effective patient involvement to promote the development of locally based lymphoedema services. They will seek to profile lymphoedema services in the NHS, the Framework documents and partnership working with patients.

Supporting Practice

Several Focus Documents and Templates for Practice have emerged from the work of the project. They aim to provide practical guidance for healthcare professionals who care for people with, or at risk of developing lymphoedema. Previous documents include a Focus Document on bandaging, available in English, French and German. There is also a Template for Practice on Compression Hosiery in Lymphoedema. The Best Practice Document has been endorsed by the international lymphoedema societies and the World Health Organisation. This major consensus document which sets out best practice for the management of people with lymphoedema in primary care will be available in English, Japanese, French and German.

The most recent in the series is the Template for Management. This was launched at the recent BLS Conference in Bristol and aims to provide practical help and guidance for the development and evaluation of lymphoedema services. Future publications will include a document on living well with lymphoedema and the impact of lymphoedema on the frail elderly. The Journal of Lymphoedema, launched last year, has been very positively received internationally, with novel research being submitted for publication. Plans are commencing to undertake a systematic review of Manual Lymphatic Drainage (MLD). Protocols have been written and they are currently subject to international review. The review will be undertaken through the Joanna Briggs Institute and will focus on several areas which will include physiology, the cultural and historical concept of eastern and western views of MLD and massage, prevention and cost effectiveness and the psychological and social effects of MLD. This work will culminate in the development of a Template for Practice for MLD.

International Work

Work is under way through national and international partnerships with industry, patients and support groups, lymphoedema societies and health care organisations to establish the size of the problem of lymphoedema and level of need. A global minimum data set will therefore be developed to identify patients and provide core data for service development and to determine outcomes of treatment. This will be in the form of an electronic database which will enable all countries to collect this data. The project will be developed in partnership with the BLS and piloted in the UK initially for 18 months.

Future Work

Following a suggestion made by lymphoedema practitioner, Kay Martin, from St Wilfrid's Hospice, Eastbourne, the LSN has produced a useful plastic lymphoedema alert bracelet which is very helpful for patients who already have lymphoedema and need to go into hospital for any reason. It is also useful for those patients ‘at risk’ of developing the condition… and who wish to stay that way!

Wearing the bracelet during a stay in hospital will help to alert medical practitioners to the condition and will help to ward off unwanted attempts to take blood pressure readings and injections, etc. The bracelets have adjustable fittings and will fit most arm sizes. Should patients wish to wear a bracelet on a swollen leg, two bracelets can be clipped together.

The wording on the bracelet states: ALERT:LYMPHOEDEMA – No Blood tests, Blood Pressure, IV Access or injections in this limb.

Bracelets can be purchased from the LSN at £1 for one bracelet or £5 for six,including postage and packing.

The "Marchers" and support crew

The greatest gift anyone can bestow is the gift of opportunity. I was fortunate enough to have been given the treatment and support to win my battles with cancer, to allow me to lead a normal life again. At the end of my medical adventures, I decided that having had such valuable support from Cancer Backup and LSN, the time had come for me to put something back. So I looked around for a way that I could usefully contribute. I settled on the challenge of walking the whole length of the South Downs Way (106 miles) from Winchester to Eastbourne, to raise funds for both charities.

Training walks began in January, starting with ten miles every Sunday morning. This was gradually increased to fifteen miles each Sunday in February, twenty miles in March, and so on. Sorting out the nuts and bolts of the event also began in the New Year. The route was pored over, and the itinerary discussed. A schedule of five days for the walkers was agreed; we found support vehicles and people to drive them, and a schedule for them was produced.

At the same time, the serious business of getting sponsorship was addressed: the tried and trusted T-shirt method was brought back again. You buy 400 T-shirts for £1.50 each. You print them for £1.50 each. Next, you find thirty-five companies or individuals to part with a minimum of £100 to get their details on the back of the shirt. You sell the shirts for a tenner apiece, and you raise over £6,500 before you take a step! Simple.

In addition, each walker was charged with obtaining sponsorship.We also encouraged day-walkers; they too, bought T-shirts, and raised sponsorship.

The March began at the foot of King Alfred's statue in Winchester on 3rd May when eight rather sleepy men, average age in excess of 50, arrived for the start of their walk to Eastbourne - 106 miles along the South Downs Way. A younger and fitter contingent, the "Sprinters", average age under 25, was to follow in our footsteps on the Saturday; they would do the same distance in three days!

In brilliant sunshine, the first day started at pace, ending by late afternoon some 27 miles later and ahead of schedule. Day Two dawned fair and a tough 25- mile day finally ended at Amberley. Day Three saw us reaching the historic village of Pyecombe, north of Brighton in the early evening sunshine.With Day Four, came a change in the weather: Grey clouds obscured the sun, and the group tramped onwards, before ending the day at Beddingham Hill. The final day began under heavy cloud, and soon a strong Westerly wind was driving rain horizontally across our path and we cleared the heights of Beachy Head in a full gale, all determined to get to the finish, which was achieved by late afternoon.

Collected at journey's end by our very able support crew, who had kept the groups fed, watered and ferried to their overnight stops throughout, we made the swift return trip to base at the Prince of Wales in Hammer Vale, near Haslemere, where supper and a well-deserved beer awaited us. The 'Sprinters' arrived a couple of hours later - the equivalent of 4 marathons in thirty-eight hours being easily polished off.

All that remained was to collect our promised cash from our sponsors.We had managed to raise a total of £11,500 - far more than I had hoped!

On a sunny evening in June at the Prince of Wales pub in Hammer, the cheques were presented to the charities, together with some humorous anecdotes from the March itself. What next, I wonder…?

LSN Chair, Anita Wallace, was delighted to be contacted by the Parliamentary Researcher to Mark Williams, MP for Ceredigion, requesting her input to a new Early Day Motion (EDM). The EDM calls for the Government at Westminster, in co-operation with the Scottish Executive and the Welsh Assembly, to do more to recognise lymphoedema and on the Local Health Boards and Primary Care Trusts to give full recognition to lymphoedema in all its forms and to make sure treatment is available for all patients at a local level. An EDM is a device to draw attention to an issue and to elicit support for it by inviting other MPs to add their signatures to the motion. The EDM (no. 1790) has now been tabled and has cross-party support.

This is the seventh EDM tabled in Parliament to help raise the profile of lymphoedema since the LSN launched its political lobbying campaign in 2001. LSN Trustees would like to encourage its members and supporters to write to their local MP requesting their support to the EDM by adding their signature. Please complete and send the draft letter enclosed in this issue of LymphLine to your MP, provided their name is not already on the published list. The text of the EDM can be seen on page 7, together with the list of signatories at the time of going to press.

The text of EDM no 1790 is as follows:

"That this House notes that at least 100,000 people in the UK suffer from lymphoedema, a chronic swelling which can affect any part of the body; is aware that the condition can be a distressing side effect of cancer and its treatments, but also occurs far more commonly in people who have not suffered from cancer; further notes that with access to a lymphoedema clinic and support of a lymphoedema practitioner, patients can do a good deal to manage and control their condition; notes with great concern that there is a postcode lottery in the treatment of lymphoedema; is disappointed that in Ceredigion and in many other areas, patients do not have access to an NHS-funded lymphoedema clinic; is concerned that often treatment is only available for patients who have lymphoedema following treatment for cancer; recognizes the excellent work of the Lymphoedema Support Network, a charitable organization that battles to raise the profile of this condition with insufficient access to public funds; and calls on the Government at Westminster in co-operation with the Scottish Executive and the Welsh Assembly Government to do more to recognize this condition, and on local health boards and primary care trusts to give full recognition to lymphoedema in all its forms, and make sure treatment is available for all patients at a local level".

Primary Care is the care provided by the people you see when you first have a health issue and those who support you on an ongoing basis. These include family doctors, community nurses, pharmacists, dentists and many more. All of these services are now controlled, managed and paid for at very local levels. England is divided into 152 'health areas' each managed by a local Primary Care Trust (PCT),Wales has 22 areas, each managed by a Local Health Board and Scotland 14 NHS Health Boards. All these bodies are tasked by the Department of Health to work with local authorities and health care providers to make sure the health needs of their local communities are met. These bodies are the ones who make decisions about what, and where, services will be available for you and, in order to do this, they currently directly control over 80% of the National Health Service Budget. The LSN believes that these services should include lymphoedema services for all those affected by the condition, however, we know that in many areas treatment is restricted to those who have lymphoedema secondary to cancer, or no local treatment exists at all.

One of the most important and probably the most challenging target of the Big Lottery Fund grant to the LSN is to raise awareness of lymphoedema and its treatment, highlighting inequalities and campaigning for improvement. In reality, this means we have to influence the Commissioners, those in the PCTs who decide what services to pay for, which in the current financial environment is extremely difficult. One of the main problems is that lymphoedema is often not well understood by those making such vital decisions and for this reason the LSN has committed to carrying out individualised lymphoedema service reviews for each PCT, NHS Health Board and Local Health board. These reviews will take the form of a written report including information about the numbers of individuals in each locality likely to be affected, the current services available including whether they are able to be accessed by everyone with lymphoedema regardless of what caused it or where it is and will highlight those areas that are providing an excellent service and those which have inbuilt inequalities or lack of services. Information will be gathered from local providers, the PCTs themselves, cancer networks and local support groups. Whilst this is a mammoth task that will take a great deal of time and effort, it will provide vital evidence as we push the Commissioners either to commit to lymphoedema or to explain to us why they will not. The work will be rolled out over the next two years and copies of the reviews will also be sent to the PCT Chairs and local MPs.

As well as influencing PCT Commissioners and their equivalents in Wales and Scotland, this work will provide a countrywide picture of lymphoedema services that has never been achieved before and will also build a definitive list of all clinics/treatment centres, which forms of lymphoedema they treat, and how our members can be referred to them.

The LSN is committed to ensuring that all people living with lymphoedema receive a correct, timely diagnosis and an appropriate level of care regardless of where they live, their ability to pay, or the site and cause of their lymphoedema. As such, we are fully supportive of any research that may improve the patient experience in this respect.We have been following the research in relation to sentinel node biopsy with interest and whilst we are delighted to think that this procedure may prove to be a safe and effective alternative to routine axillary dissection in early stage breast cancer, the LSN still has major concerns with regard to development of lymphoedema.

The most recently reported research into quality of life outcomes between patients with clinically node negative invasive breast cancer who received sentinel node biopsy and patients who received standard axillary treatment, Robert E.Mansel et al, 2006; Journal of the National Cancer Institute 98(9):599-609, showed that, whilst worse in the standard treatment group up to 6 months after surgery, objective arm measurements did not differ statistically significantly between the groups at 12 months after surgery. This outcome is highlighted in the patient experience letter, received from an LSN member, published on page 7. Additionally, if one assumes 40% of sentinel node biopsies are positive (the report suggests that 60% are negative), then these patients will proceed to a second axillary intervention, which may prove to have an even greater risk of producing lymphoedema than one single axillary dissection. It should also be remembered that development of lymphoedema remains a life-time risk following treatment for breast cancer.

The LSN was also concerned that the National Cancer Director, Professor Mike Richards, had suggested that advances in the use of sentinel node biopsy techniques would ultimately mean that lymphoedema would be a thing of the past. This suggestion prompted the LSN to write to Professor Richards, with the full support of Professor Peter Mortimer, to outline that lymphoedema is also a post treatment risk secondary to other cancers such as gynaecological, prostate and the ever increasing melanoma and that this incidence will continue. In addition, the LSN highlighted that lymphoedema is a life long condition and those who currently live with it will continue to do so and will need ongoing care, many others who have had cancer treatment in the past will go on to develop the condition in years to come and non-cancer related lymphoedema patients will continue to need correct diagnosis and treatment.

The reply received from Professor Richards was very fair; he said he had certainly never intended to give the impression that lymphoedema would become a thing of the past as a result of the introduction of sentinel node biopsy and summarised by saying "I agree with you unreservedly that this will not eliminate the problem and that we must work together to ensure that patients get the best care available". Following this exchange of letters, LSN Chair, Anita Wallace and Professor Mortimer had the opportunity to meet with Professor Richards and discussed the general lack of awareness of the condition. The outcome of this meeting was very positive and the LSN is grateful for Professor Richards' understanding of the problem and his support, and we welcome the opportunity to work more closely with him.

LSN members are well aware that people with lymphoedema are prone to develop skin infections (cellulitis). However, it is also clear that many healthcare professionals are not familiar with the problem and may therefore not be confident about how to treat it.

Unfortunately, there is not much research evidence about which is the best way of managing cellulitis, such as which antibiotics are the most effective and how long they should be taken for. Similarly, there is not much evidence to suggest which is the best antibiotic and dose to take regularly to prevent cellulitis developing in those who are particularly prone to the problem (prophylactic antibiotics).

When research evidence is lacking, a common approach to decide how best to treat a condition is to develop "consensus guidelines", based upon the views of a group of "experts".

With this in mind, Anita Wallace, LSN Chair, arranged a meeting of clinicians involved in treating lymphoedema, chaired by Professor Peter Mortimer, to draw up such guidelines which could be distributed widely and help to standardise the treatment of cellulitis. The work was developed with the British Lymphology Society (BLS) over a period of time and an LSN fact sheet was produced in March 2006. The guidelines were reviewed in October 2006.

The consensus group is keen to find out if the guidelines are effective and to do this a questionnaire has been developed. It is hoped that LSN members will complete the questionnaire should they develop an episode of cellulitis. The questions seek to determine how each episode was treated and whether this was helpful.

It is best to fill in the questionnaire at the time of having cellulitis rather than trying to remember what happened with a previous episode. A copy of the questionnaire is included in this edition of LymphLine.

We are co-ordinating this audit at the lymphoedema service in Derby, so we would be grateful if members would send completed forms to the Freepost address at the end of the questionnaire. Any queries or requests for additional information/questionnaires should be addressed to Katie Riches, Research Nurse, Nightingale Macmillan Unit, 117a, London Road, Derby, DE1 2QS. Telephone number: (01332) 254900 extension 4127.

We plan to collect information for 1 year and will publish the results in a future issue of LymphLine. The questionnaires are completed anonymously so no personal details can be identified.

We feel this is an important study and would be very grateful for LSN members' help. We are keen to get as many completed forms as possible. The results will let us assess whether our guidelines are effective and enable us to modify them as appropriate.

We thank you very much for your help and look forward to receiving your responses.