The lack of statutory funding has long been a major issue for the LSN, forcing the Charity to continue to rely on membership subscriptions and donations and feeling increasingly frustrated that it is unable to put some of its plans into action. The LSN has only two paid administration staff and the Charity is over-reliant on a small group of Trustees to manage the Charity and execute its many activities and projects. Time taken up by administration duties is time lost in utilising the Trustees' core strengths.With this in mind, the Trustees appointed professional Fundraising Consultant, Isabel White, to work with them to try to raise the funding needed to put some of their plans into action. Isabel, who has much experience and success in raising funds for charitable organisations, played a major role in completing the complex Big Lottery Fund application forms. Following the submission of the application, The Big lottery Fund requested a telephone interview with LSN Chair, Anita Wallace and Honorary Secretary, Barbara Burbidge, which lasted an hour and a half. This interview ensured that the passion and commitment of the Charity was fully conveyed and understood; it also firmly underlined the desperate need to inform, educate and support lymphoedema patients.

The Trustees are currently working once again with Isabel to prepare further applications to submit to other Fund Holding Trusts in the hope of obtaining the remaining funding that is needed to commence the development project. If successful, sufficient resources will be available for the LSN to appoint a full time 'Development Manager' to assist the Trustees in the implementation of their three-year development plan.

This plan covers a wide range of activities, including:

• Influencing long-term care policy and practice by targeting Primary Care Trusts
• Instigating more media opportunities and raising awareness of the condition and the services the LSN can offer
• Reaching more patients - diagnosed and undiagnosed
• Reaching more lymphoedema services
• Targeting breast cancer clinics with preventative literature
• Providing more information; in print, video and DVDs
• Launching further patient satisfaction questionnaires
• Translating resource materials for minority and ethnic groups
• Attending more conferences and exhibitions within the health arena
• Taking part in the 'Expert Patient' programme

The LSN has now secured the influential endorsement of The Royal College of General Practitioners (RCGP), The Royal College of Physicians (RCP) and The Royal College of Nursing (RCN) for its campaign to raise the profile of lymphoedema and its treatment within Primary Care Trusts (PCTs). These additional high profile endorsements will attach even greater significance to this patient-led initiative.

In letters to LSN Chair, Anita Wallace, Dr Roger Neighbour, President of the RCGP said, "This indeed is a very important issue that for quite some time hasn't been given the full attention it deserves ". "Upon discussion amongst the Officers of the College it has been agreed the RCGP will endorse this very worthy patient-led campaign ".
Professor Carol Black, President of the RCP said that on behalf of the RCP, she was delighted to endorse the very good work that the LSN is doing.
Beverly Malone, General Secretary of the RCN wrote, "I wish the Lymphoedema Support Network every success and hope that the care of patients who suffer from lymphoedema radically improves as a result of its hard work and worthy endeavours ".

With the help of RCN Primary Care Adviser, Lynn Young, the LSN has developed a powerful strategy to target all PCTs and Strategic Health Authorities (SHAs). The fundamental objective of the campaign is to increase the awareness of lymphoedema and its treatment; in particular the LSN will be highlighting:

• The extent of the primary and secondary lymphoedema population.
• That increased government NHS funding is not reaching lymphoedema patients.
• The benefit of early diagnosis and appropriate treatment.
• The cost effectiveness of professional management and the related cost savings.
• Quality of life issues for lymphoedema patients.

• A letter incorporating these issues will be sent to each of the PCTs and SHAs, signed by Anita Wallace and Professor Peter Mortimer, the Charity's Chief Medical Advisor; together with a copy of the Lymphoedema Framework Project journal which has published Standards of Practice for PCT based lymphoedema services; and the analysis of 1400 'Patient Experience' questionnaires, completed by LSN members.
• LSN members and supporters to write to their local PCTs.
• The British Lymphology Society (BLS) will send a supporting letter to all PCTs and SHAs further highlighting the need for greater resources.

"For the millions of people who have illnesses that they will live with for the rest of their lives, such as diabetes, heart disease or asthma, it will mean much closer personal attention and support in the community and at home. "

The LSN sincerely hopes that this encompasses lymphoedema patients!

The NHS Improvement Plan further says:

"Primary Care Trusts will control over 80% of the NHS budget and they will use this financial muscle to secure the best possible deal for each and every patient that they serve. Patient choice will be a key driver of the system and resources will flow to those hospitals and healthcare providers that are able to provide patients with the high-quality and responsive services they expect. Independent inspectors will provide patients with assurance of the quality of care wherever it is delivered. There will be a much stronger emphasis on prevention, keeping people healthy and avoiding the need for medical care in the first place. "

Hopefully this intention will provide further weight to our campaign.

The LSN has secured the valuable support of two of the UK's leading cancer charities for its patient-led initiative to raise the profile of lymphoedema and its treatment within Primary Care Trusts (PCTs).

Dame Gill Oliver, Director of Service Development, Macmillan Cancer Relief, comments:
"Macmillan Cancer Relief is pleased to support the LSN in its activities to raise awareness of the devastating effects of lymphoedema.We have already funded a number of posts in acute settings/hospitals and hospices and welcome efforts to improve facilities in the community."

In a letter to LSN Chair, Anita Wallace, Delyth Morgan, Chief Executive of Breakthrough Breast Cancer wrote:
"I agree with you that for too long lymphoedema has been sidelined as an issue and Breakthrough Breast Cancer would very much welcome the opportunity to support you on a campaign to raise the profile of lymphoedma with PCTs."

In addition, she has offered her further support by encouraging members of their Campaigns and Advocacy Network (CAN) to also become involved and has suggested the inclusion of an article in their CAN newsletter, The Advocate, outlining the LSN campaign.

The Association of Chartered Physiotherapists in Oncology and Palliative Care (ACPOPC) has also given its official support to the campaign. ACPOPC Chair, Gillian Percy, is hopeful that through targeting PCTs alongside its political campaign, the LSN will manage to go a long way towards achieving its aims.

Fully appreciative of the need to balance the endorsement from these cancer related organisations, the LSN has also gained official support from the Long-Term Medical Conditions Alliance (LMCA), of which, the LSN has been an active member for many years. The LMCA is the umbrella body for national voluntary organisations working to meet the needs of people with long-term conditions. Their vision is of a society in which people with long-term conditions have control over their lives and can live them to the full. Chief Executive, David Pink, comments:
"There is evidence of a frequent lack of understanding by health and other professionals of the needs and experiences of many people with long-term conditions, such as lymphoedema. LMCA supports the need for more awareness of this condition, its impact on a person's quality of life and the need for specialist experience."

The LSN is fully aware of the difficulties experienced by countless patients in obtaining access to treatment.Whilst parts of the country have very good lymphoedema clinics, elsewhere, services are limited in scope and are, in effect, rationed. In some areas, however, there are no lymphoedema clinics, or they are only available for patients who have lymphoedema following treatment for cancer and therefore, patients with noncancer related lymphoedema often receive no help at all.

With this in mind, and working alongside its successful political lobbying campaign, the LSN is now preparing to raise this issue with the PCTs. The aim is to ensure that lymphoedema and its treatment is fully recognised and is firmly placed on the health care agenda at a local level.

The LSN is currently working with Professors Christine Moffatt and Peter Franks from the Centre for Research and Implementation of Clinical Practice (CRICP) at Thames Valley University, as full research partners, on a 3 year project (The Lymphoedema Framework Project) to evaluate a model of care for lymphoedema services in South West London. From this work, it is hoped to introduce national recommendations for services. The Framework project has now produced Standards of Practice for PCT based services, which have been published in the first issue of the project journal.With the full support of Professors Moffatt and Franks, this information will be used together with the analysis of 1400 'Patient Experience' questionnaires completed by LSN members, as part of the approach to the PCTs. In addition, all LSN members and members of the British Lymphology Society (BLS) will be encouraged to actively participate in the campaign.

A lack of funding has long been a major issue; many health care providers are either unwilling or unable to provide adequate resources to support local, equitable lymphoedema services. Therefore, the LSN has secured the support of Health Economist, Professor Nick Bosanquet, Imperial College, London. Professor Bosanquet comments:
"Health economists need to measure the economic costs of lymphoedema. These would include treatment costs, including emergency admissions, and costs to patients and carers. For some, the disease could mean that they cannot work, with heavy costs from long-term disability. It is likely that the disease burden for lymphoedema has been greatly under-estimated and that we could develop some cost effective treatments quite quickly for this orphan disease."

By working together with other organisations, the LSN is hopeful that this patient-led campaign to raise the profile of lymphoedema and its treatment within the PCTs will be instrumental in ensuring that all lymphoedema patients receive an early diagnosis, equitable access to services, a suitable level of care and improved quality of life.

When the first clinic opened in Wrexham in 1995,Wales was considered to be a 'black hole' in the lymphoedema world. Thankfully, the situation has changed dramatically. For LSN members with primary lymphoedema, reading this might appear cold comfort, but there is light at the end of the tunnel and hopefully the plans for the future will give hope to the hundreds waiting for treatment.

This year, the British Lymphology Society will be celebrating its 20th birthday and we are very happy to be hosting the event in Cardiff.

I'm sure we are all aware that Sir Michael Sobell House, Oxford and the Royal Marsden Clinic pioneered the management of lymphoedema in Great Britain.

From this humble beginning we now have 218 lymphoedema clinics in the UK. However, only 92 of those treat noncancer related lymphoedema. There are also 54 independent practitioners, many of whom take NHS referrals.

However, we are 20 years down the line and we are far from the ideal situation. Postcode lottery still prevails in places, not to mention the cancer related/ noncancer discrimination.

It must be so difficult to have non-cancer lymphoedema for most of your life and be refused treatment, only to find that your neighbour has developed the condition following cancer treatment and gets prompt attention.

This situation has come about due to the fact that most of the services get funding from hospices or from cancer services money and because there is never enough money, the non-cancer patients are not offered treatment.

All of the therapists feel terrible about this and work very hard to address the inequity in the service provision. The NHS is a very large organisation and always has more demands on its resources than it can satisfy.

With this in mind, the therapists in Wales got together in October 2000 and following on from that meeting, The Welsh Association of Lymphoedema Services (WALS) was founded in July 2001.

WALS
The association has two main functions:
1. Developing a strategy for an equitable all Wales Service.
2. Supporting the therapists to develop a research based cost effective service.

The whole group meets 2 or 3 times a year to plan strategy. This group is supported by Macmillan Cancer Relief and chaired by Zoe Whale,Macmillan Lecturer for Wales. It has an invited membership of a Breast Surgeon, Palliative Care Consultant, Consultant Microbiologist, a Lecturer, a representative from the LSN, the Nurse Advisor to the Welsh Assembly, the Macmillan Service Development Manager for Wales and the Specialists. It also has associate members, who can be called on when their specific skills are needed. These include a Cancer Network Manager and a Director of Finance. The combination of skills and political awareness of the members has ensured that WALS is prepared for any developments within the NHS in Wales and ready to respond to new initiatives.

A yearly position paper is produced and sent to all senior managers within the Trusts, the Cancer Networks and now also the Local Health Boards. (The Welsh equivalent of the English Primary Care Trusts).

The greatest achievement, we feel, is that the Cancer Services Co-ordinating Group commissioned Dr. Kay Richmond to compile a comprehensive review of the lymphoedema services in Wales. This report was presented to a large group of Health Service Managers and Consultants in September 2003.

The most significant recommendation is that the service should be available on a basis of clinical need - regardless of the cause of the lymphoedema.

WALS is now working on the implementation of the recommendations in that report.

The present focus is on developing a business plan to employ a project manager to 'develop an agreed programme of development and implementation (short and long term) for both primary and secondary lymphoedema together with appropriate administrative staff in order to release specialist staff for the jobs only they can do'.

The Lymphoedema Specialists meet twice a year, and this, we all feel, has been invaluable. At the initial meeting, the presentation we used to attract the attention of the Cancer Services Co-ordinating Group was prepared.

It is a support for new staff, it enables us to develop information booklets, which we all use, and we also have developed a data collection system so that we can compare referral trends in the different areas.We all use the same referral form and are working on an assessment form to be used throughout Wales.

This twice-yearly support has been invaluable, especially for the therapists struggling with staffing shortages. This is something we feel would benefit other services in the United Kingdom, as the loss of qualified staff due to burnout and lack of support is a worrying issue.

The Service Provision:

Anglesey and Gwynedd: Offer service to all patients with lymphoedema. Have 1.85 therapists working and have outreach clinics in Dolgellau, Pwllheli, and Holyhead. Planned new clinic at Eryri Hospital about to begin construction.

Conwy and Denbighshire: Offer service to all patients. Clinics in St. Davids Hospice, Llandudno and St. Kentigern's Hospice in St Asaph. Only 1 full time therapist. Unfortunately, greatly understaffed and not taking any more referrals until staffing levels increased.

Wrexham and Flintshire: Offer service to all patients. Have 4 therapists, 2 working part time.

Powys: North Powys area has always been able to refer to the clinic in Shrewsbury Hospice. That service has now extended and there is a service in Newtown Hospital 10 hours a week. All patients are accepted.

South and Mid Powys: Are awaiting confirmation of funding for 28 hours a week, to take all patients.

Ceredigion: Offers a service to breast cancer patients. There is no service for other cancer-related patients or for the primary patients. The Cancer Network is investigating resources to improve this service.

Pembrokeshire: The Paul Sartori Foundation, Haverfordwest, offers a service to all patients from Pembrokeshire. This may reduce as the post holder has left. The Cancer Network is investigating resources to improve the service.

Carmarthenshire: Good news to report here, 1.4 full time staff, taking only cancer related patients initially, service starting in May 2004.

Swansea/Neath/Port Talbot: This area has been struggling for years with one practitioner, but will be offering a full service to all patients within 6months as funding is now in place for another full time therapist. There is also a very innovative programme supported by the New Opportunities Fund with 2 full time therapists offering a rehabilitation and prevention of lymphoedema programme to all patients undergoing breast cancer treatment in the area.

Gwent: This area has a full time therapist, 2 days in St.Woolos, Newport, 2 days in Pontypool and ½ day in Ystrad Mynach. The service is offered mainly to cancer patients, new non-cancer patients remain on a waiting list at present.

Many Lymphoedema services in Scotland have changed and developed in the past few years and these will have affected LSN members in various ways. It is perhaps fair to say that it has sometimes been a frustrating time for practitioners and patients alike!

Fortunately, practitioners such as Barbara Lyle in Edinburgh and Margaret Key, Margaret Rice and Marie Todd in Glasgow, continue their commitment to lymphoedema. In other parts of Scotland, smaller services with experienced practitioners have continued to provide treatment over many years, most of these being based in cancer or palliative care settings. More recently, it has also been exciting to see the development of new, more comprehensive services in other Health Boards.

In Grampian, for example, Gillian Craig, a physiotherapist and specialist lymphoedema practitioner, leads a small team of keyworkers and provides treatment for all types of lymphoedema/ chronic oedema. Forth Valley Health Board have also recognised the need to fund lymphoedema services and Moira Boyle, the Lymphoedema Nurse Specialist, is based at Strathcarron Hospice and liaises with keyworkers in acute hospital and community settings. In Tayside, Elaine Cruikshank is the Macmillan Lymphoedema Specialist, working from Roxburghe House.

The launch of the Graduate Diploma in Chronic Oedema at University of Glasgow in 2002 has provided a structured pathway for practitioners to learn about lymphoedema treatment. There are four modules in this diploma and module 2 teaches the specialist skills of multi-layer bandaging and the Casley-Smith method of manual lymphatic drainage. As a result, a small number of nurses and physiotherapists in parts of the Borders,Western Isles, Highland, Ayrshire and Arran, Argyle and Clyde, Tayside and Lanarkshire Health Boards are now able to offer the range of lymphoedema treatments. However, the arrangements for these are still quite 'ad hoc' and the number of practitioners with protected time or funding for lymphoedema treatment is limited.

In 2002, the Scottish Lymphoedema Practitioners (SLP) group was set up by lymphoedema therapists with representation from each Health Board. This group aims to achieve standardisation of lymphoedema practice throughout Scotland and meets around 4 times each year. At present, the group members are undertaking an audit of all new referrals to lymphoedema services. The SLP group has also been invited to present a session on lymphoedema at a Cross- Party meeting of the Scottish Partnership for Palliative Care (SPPC) group in June 2004. The SPPC became aware of the difficulties experienced by people with lymphoedema (both cancer and non-cancer related) in accessing treatment.

Northern Ireland has traditionally had the post code lottery service that is observed in other parts of the United Kingdom. This was particularly highlighted in a regional audit that was carried out in 2002. The conclusions of this audit were as follows:

• Clinicians in Northern Ireland reflect a poor understanding of lymphoedema and a lack of awareness of potential "at risk" patient groups
• Prophylactic education/care is not routinely available for all "at risk" groups
• Lymphology/lymphoedema management education is not routinely targeted at undergraduate level
• 42% of clinicians 'treating' lymphoedema have not attended a course from a recognised school
• All resources are extremely limited, with no specialist, dedicated clinics
• Two counties (Fermanagh and Tyrone) had no trained clinicians
• General resources were poor with limited access to multi professional support, accommodation and treatment provisions
• Negligible services for primary lymphoedema
• Pressurised budgets due to limited senior management support
• Significant lack of proactive service planning and review

Whilst the results were not unexpected for those who have been desperately trying to promote the need for a regional service review, together with a local hospital review of gynaecology care and a retrospective study of post breast surgery management, they influenced the Chief Medical Officer to instigate a Regional review of lymphoedema services.

The Regional Lymphoedema Steering Group is chaired by Dr. Angela Garvey, a Palliative Care Consultant, who is passionate about driving forward changes in this speciality. This group has representation from all stakeholders e.g. patient support groups, surgery, dermatology, oncology, nursing and physiotherapy. Over the past year it has produced a document which will shortly be available for consultation in the province. It is hoped that funding will be made available to provide the network of proposed clinicians and specialists necessary to establish equity of access to a uniformly high standard of care for all patients with lymphoedema in the province.

Other groups have also been striving to influence the Health Boards and other purchasers. Mrs. Jean Johns, Physiotherapy Manager at Belfast City Hospital, successfully raised the profile by presenting to a gathering of Senior Board Officials. This and other local initiatives have helped to secure promised funding throughout the province. Other managers have been able to access New Opportunities Fund (NOF) money for service development and training.

Patient support groups have also been very active. There are now two lymphoedema support groups, one in Belfast and one in Londonderry. Each has been involved in education and fund raising. The Belfast group has been able to fund one clinician to attend the Földi Clinic last year, and to part fund two clinicians this year. They also acted as a patient user group on the steering committee, and helped to provide examples of patients' experiences to add local voice to the impact of the document.

Access to recognised training has improved dramatically with the increase in publicity. This has resulted in five local physiotherapists and one nurse attending the Leduc UK course this year.We also have two Casley-Smith trainers participating in the MacMillan training trainers programme, which already has made Casley-Smith re-accreditation much more accessible. As of June 2004, four clinicians will have attended the Fööldi Clinic, three of them to the advanced level training.

The Early Day Motion (EDM) tabled by Dr Liam Fox in March 2003 attracted 139 cross-party signatures before it ceased to exist at the end of the Parliamentary year in November 2003. Following the official re-opening of the current Parliamentary year, the newly appointed Shadow Secretary of State for Health, Tim Yeo, gave a boost to the LSN political lobbying campaign, by carrying the EDM forward. MPs have been quick to show their support and there are already 63 signatories.

LSN Trustees were also delighted that Tom Levitt, MP for High Peak, has given even further support to our campaign by tabling a second EDM which includes praise of the LSN for 'campaigning ceaselessly for greater awareness of lymphoedema'. This EDM has currently attracted 67 cross-party signatures. Mr Levitt previously demonstrated his willingness to help the LSN Lobbying Campaign by delivering an Adjournment Debate in the Westminster Hall Debating Chamber on 'The Treatment of Lymphoedema' in December 2002, which was the first ever, formal mention of the condition in a House of Commons debate. He has also attended an LSN, Royal Marsden Hospital support group meeting, as a guest speaker, when he talked about his own hospitalisation on two occasions when suffering from severe attacks of cellulitis.

An Early Day Motion is the term used to describe notices of motions given by MPs, which are not generally expected to be debated. The tabling of 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. EDMs can often attract a great deal of publicity and many people regard them as a gauge of opinion. An EDM only contains one sentence, which is broken up by the use of commas and semi-colons. For an EDM to be tabled, six sponsors are required. If these sponsors are all from one party, it will generally follow that the majority of other signatures will be from the same party. It is generally only all-party motions that can obtain large numbers of signatures. It was, therefore, very encouraging to see the original EDM achieved cross-party support. Not all MPs are able to sign EDMs, Ministers and whips do not normally sign and under the Ministerial Code, Parliamentary Private Secretaries "must not associate themselves with particular groups advocating special policies", and they do not normally sign. Neither the Speaker nor Deputy Speakers will sign EDMs and internal party rules may also affect who can sign. In an average Parliamentary session, only about 6 or 7 EDMs reach over 200 signatures, and only 70 or 80 get over 100 signatures. Quite a number will only attract one or two signatures. EDMs remain current for the rest of the session in which they were put down and extra names can be added at any time up until the session ends.

The full text of both EDMs is as follows.

EDM No 28, tabled by Tim Yeo
"That this House notes that there are around 100,000 men, women and children in this country who suffer from lymphoedema and its frequent associate condition, cellulitis, and that it particularly affects women who have had breast cancer and suffered consequent damage to their lymphatic system; congratulates the Lymphoedema Support Network (LSN) and the British Lymphoedema Society in its commitment and tireless hard work in advising and helping people with lymphoedema, with the LSN receiving over 2,000 referrals for advise each year, yet which receives no statutory funding; is deeply concerned that the Government has not committed any resources to lymphoedema prevention campaigns, and has failed to issue any specific guidelines to hospital trusts and PCTs for the provision of services to lymphoedema sufferers and that there are no specialist lymphological consultants employed in any hospital or university in this country; and urges the Government to take the provision for the prevention and treatment much more seriously than it currently does".

EDM No 159, tabled by Tom Levitt
"That this House, recognising that lymphoedema can be a distressing and painful malfunction of the lymphatic system, congratulates the Lymphoedema Support Network on its 12th anniversary and for campaigning ceaselessly for greater awareness of lymphoedema within primary medical care; and calls for such awareness to be supported by clear and effective treatment guidelines for lymphoedema to be specifically included in the training of medical staff and for support for initiatives such as the expert patient scheme and Macmillan mobile services in the treatment of this often chronic condition".

The LSN is asking all members to actively participate and support our campaign, by encouraging your local MPs to add their signatures to the EDMs.We would like you to complete and send the letter enclosed with this issue of LymphLine to your MP, providing their name is not already on the list published below.

EDM information obtained from the parliament.uk web site.

List of EDM Signatories

EDM 28 LYMPHOEDEMA 26.11.03
Mr Tim Yeo, Mr Peter Ainsworth, Mr David Amess, Tony Baldry, Gregory Barker, Mr John Baron, Mr Roy Beggs, Peter Bottomley, Mr Julian Brazier, Mr Simon Burns, Mr Gregory Campbell, Derek Conway, Mr Jonathan Djanogly, Mr Nigel Dodds, Mr Alan Duncan, Mr Peter Duncan, Mr Nigel Evans, Michael Fabricant, Mr Mark Field, Mr Howard Flight, Mr Adrian Flook, Mr Mark Francois, Mr Edward Garnier, Mrs Cheryl Gillan, Mr Paul Goodman, Mr James Gray, Chris Grayling, Mr Philip Hammond, Mr Oliver Heald, Lady Hermon, Mr Mark Hoban, Mr Michael Howard, Mr Robert Key, Miss Julie Kirkbride, Mrs Jacqui Lait, Mr Andrew Lansley, Mr Oliver Letwin, Dr Julian Lewis, Tim Loughton, Mr Peter Luff, David Maclean, Mrs Theresa May, Miss Anne McIntosh, Patrick Mercer, Mr Andrew Mitchell, Mr Malcolm Moss, Dr Andrew Murrison, Mr Stephen O'Brien, Mr George Osborne, Mr Richard Page, Mr John Randall, Mrs Iris Robinson, Andrew Rosindell, Mr Jonathan Sayeed, Andrew Selous, Mrs Caroline Spelman, Bob Spink, Mr Hugo Swire, Mr John Taylor (Solihull), Angela Watkinson, Mr Bill Wiggin, Mr David Wilshire, Ann Winterton.