This conference brought together over 130 people from a diverse range of backgrounds (patients, NHS and independent professional practitioners, managers at all levels, academics and industry) from across the country to work on:

• Building a shared picture of what is happening now for people with lymphoedema
• Considering what good locally-based, patient-sensitive services might look like in a PCT world
• Identifying issues for further work
• Making recommendations for moving things forwards both in Wandsworth and more generally

• A lack of knowledge and awareness about lymphoedema on the part of professionals, patients, managers and the general public. The gaps include prevalence, recognition and diagnosis, delayed referral, an evidence base for treatment, and a failure to acknowledge the potential contribution of the 'expert patient'.
• Inadequate and inequitable services, across dimensions ranging from access, referral, standards and variations between recognition and treatment for primary and secondary (post Cancer) lymphoedema.
• Inadequate and inequitable funding and other resources for e.g. services, education and training, garments and bandages.
• Gaps in communication which mean that practitioners are often working in relative isolation,multi-disciplinary teams are rare and frequently neither patients nor professionals know what is available.

• Equity of access for people with post cancer lymphoedema and all the other forms of the condition
• Equity of treatment across the country
• Education and training for health care professionals
• Funding and resource issues
• Public awareness
• Partnerships with patients
• Getting a better sense of the size of the problem locally and nationally
• Developing career structures for people wanting to work with lymphoedema patients

I feel very honoured to be asked by the LSN to write an article for LymphLine to inform you of the progress that is being made in the Somerset area. I would also like to highlight the reasons for my determination to spread the awareness of lymphoedema.

We have just set up a Support Group at St.Margaret's Hospice in Taunton. Ali Butterworth, the Lymphoedema Specialist Nurse, up until 9 months ago had obtained funding for 2 and a half days a week for the 200 patients on her books. Now she has 5 days; that's PROGRESS. Through Ali, I became a member of the LSN, and look upon it as a safety net, I wish I had known about it earlier.

My problems came to a head in 1983 when I was diagnosed with cellulitis and lymphoedema, I was so ill, my GP brought a skin specialist to visit me. Total bed rest for ages was recommended. My skin peeled like a snakeskin leaving lovely delicate new skin on show. No treatment afterwards. I did get on with my life but six years later, I had to give up my part-time lecturing position at Somerset College of Art and Technology where I taught Hotel and Catering Management; A Level Home Economics, short vocational courses, including Men's Cookery and Advanced French Cuisine. I was also forced to give up running my (as quoted in Egon Ronay's 'Just A Bite' restaurant guide) "busy, bustling" restaurant, because I couldn't cope with the standing and walking, and cooking in front of the hot ovens that was required. A certificate from my doctor was required for tax purposes; it stated "This patient has lymphoedema and recurring cellulitis… will never work again". It seemed like a death sentence.

I still received no treatment – just the occasional prescription for Penicillin V low dosage. It didn't prevent the cellulitis reccurring every July/August when my legs would weep and drip like a very slow leaking tap into my shoes. To prevent this I would use primitive methods including cotton wool pads and bandages strapped around my ankles and legs (to soak up the sticky mess) just to stop my feet sloshing about in my shoes.

Luckily on moving to Burnham-on-Sea, my doctor made an appointment for me to see a skin specialist, it happened to be the same one who came to my bedside in 1983. He prescribed some more Penicillin V and Diprobase ointment for my skin, together with the recommendation to rest, he was also disappointed to see that through neglect, my legs had become fibrotic.

I continued to see the Consultant Dermatologist as an out-patient at regular intervals for about 2 years. On his retirement in 2000, he made an appointment for me to see the Lymphoedema Specialist Nurse at St Margarets Hospice in Taunton.

I had an attitude problem with this idea, as in my simple mind, I thought hospices were places one did not come out of alive. How wrong I was, I have never met such lovely, caring, helpful people.

I had 2 weeks of intensive bandaging, wearing size 11 bootee type slippers, but at the end of this, I had lost 3 litres of fluid in my legs!

I felt so special; I could walk and had specially measured tights, I could wear practical shoes (size 7) nice boots and a skirt instead of always wearing slacks. I felt like a woman again. This was a real local safety net.

Backtracking a little, just 2 years previously in 1998, a physiotherapist at the local hospital whilst treating my husband, said I needed bandaging and to be taught self massage, but sadly, he was not able do it. Knowing all these positive and negative approaches I was determined to 'spread awareness' some how!

I wrote articles in magazines, local ones at first. I photocopied the LSN fact sheets and the MP's campaign letter included in LymphLine and distributed them in GP surgeries and the local Women's Institutes, where I gave talks. Every year, the Women's Institutes have "Resolutions", these are 'hot topics' put forward from counties throughout the UK and then finally, only 2 are selected to be read and voted on each year at a National Level meeting where 10,000 women congregate, representing all the Institutes.

This was a real eye opener. I approached my local Burnham-on-Sea W.I where I am a member, and they decided to 'go for it' – the Resolution read "We urge H M Government to make the Medical Profession more aware of this disabling condition giving urgent diagnosis and treatment to follow". I then had to précis in 60 words 'What is Lymphoedema'. This was then sent to 190 W.I's from Head Office and read out to all members. Unfortunately, we did not get picked for National Level. We were, however, short-listed, and the Chairman of the Somerset Federation of W.I asked me if I would talk at the Somerset Council Meeting to 190 Women Institutes (6 members from each) I was delighted and said a very emotional "Yes".

I had a huge red and white banner made which said...'Lymphoedema Support Network'; large headings taken from the LSN fact sheets were pinned up on a bamboo screen; heaps of LSN fact sheets, treatment garments and a huge diagram of the lymphatic drainage system outlined on a naked man. So, for a bit of fun, or should I say 'decency', I stuck a 'fatsia' (fig) leaf over the genitalia!

I was number 9 on the agenda and went onto the stage thinking the whole audience could hear my heart beating, I was announced, and the Resolution was read out by the Chairman.

As Proposer of the Resolution, I was allowed 3 minutes to talk about primary and secondary lymphoedema – explaining the condition in graphic detail, the problems involved and the lack of knowledge from GP's etc. The Seconder, acknowledging lymphoedema as a chronic condition, went on to explain that there is help available if you are lucky enough to live in the right area, and following a correct diagnosis are able to obtain referral to a lymphoedema clinic.

Unexpectedly, I had about 20 minutes of questions and answers aimed to and from me. I was asked "is this hereditary?" "is cellulitis the same as lymphoedema?" "is it curable?" "was I lobbying the Government to band about willy nilly disabled badges so that we could block the roads, etc etc?".

I then had to summarise the speeches; I received a standing ovation. The Chairman once more read the 'Resolution' and asked the audience to take a vote. A unanimous count 'FOR' with no against and no abstain. I was applauded again – and I could see some people in tears. What a reaction!

I then manned my stand for the next 5 hours, answering questions to queues of people, all through lunch, tea, and at the end of meeting breaks. People were nudging each other for a place near me, touching me, saying – "oh you poor dear". Hugging and kissing me and desperate to tell me their ailments, I had to firmly tell them that I was not a doctor or a nurse, but a patient.

I have never in my whole life experienced such emotion from people other than at a funeral, or a Billy Graham soap box. I came home numb, but felt that I had without a doubt, achieved so much in a day, so many people had taken their blinkers off, and had really became aware that we are desperately short of trained nurses and clinics for lymphoedema patients.

We are frequently told by our GP's and Consultants – "Learn to live with it – get on with your life – you are obsessed with your health – lose weight". All seemed to be worth putting up with, as I know, in my own little way, I am like a small drop of water that hopefully will become a huge puddle given time and energy to campaign again to get our Resolution through to National Conference in June 2003.

Note:- I am always asked about feed back from this Resolution. Apart from phone calls from lymphoedema sufferers – and asking me to give a talk – I have none to relate.....but I am working on it.

It all began on Sunday July 22 last year. That was the day after our wedding, and most of the wedding party had gone out for a celebratory meal. Towards the end of the meal our best man stated that he thought he should start doing a bit of running to get fit. The rest of us had a big laugh at this (he isn't the sportiest of people), and then for some reason the moment got the better of me. I suggested that we could all start running, giving each other morale support, and that we could aim for some sort of goal. This idea actually went down relatively well, and before I knew it there were seven of us going to do the Great North Run in Newcastle on October 6 2002 (it should be said that my best man rapidly changed his mind about running, and was not included).

The Great North Run is a half marathon (just over 13 miles) around the city and hills (that's the bit I don't like) of Newcastle. After agreeing to do it, our thoughts changed to who we were going to raise money for, and I decided that I would try to get sponsorship for the Lymphoedema Support Network. At this point I should probably explain a little bit about who I am, and why I want to raise money for the LSN. I am 26 years old, and part of the Dermatology unit at St George's Hospital Medical School, headed by Professor Peter Mortimer, where we are doing research into secondary lymphoedema that can occur following treatment for breast cancer (breast cancer related lymphoedema - BCRL). I am coming to the end of a PhD on BCRL, and over the course of our ongoing studies we have been helped by many volunteers, both with and without BCRL, coming forward to take part in our research. The LSN has been of particular help by running adverts asking for volunteers, to which many women responded, and without which the research would not have been possible. I therefore felt that we had a debt of gratitude to both the women who volunteered and the LSN, and decided that if I was going to be stupid enough to try and run 13 miles, that I should at least do it for a good cause and give a little back to the people who have helped us.

Therefore, the training has now started (which is definitely hard work and sometimes I think that our best man had the right idea about not doing it) and there is a little under 3 months to go. My wife, Sally, has also decided that she should get sponsored for the LSN, so hopefully we will be able to raise a reasonable amount. I know that during the run (and the training) the thought that it all goes towards a good cause will definitely help to keep the tired legs moving.

If you would like to sponsor me for the LSN then please contact the LSN and give them your details along with how much you are willing to sponsor me (or Sally, or both of us) and hopefully together we can raise some money for the LSN and move forward in lymphoedema support and understanding.

Since then, we have managed to secure research funding from a prestigious grantgiving body, the Kings Fund, who fund major projects that will improve the health care of Londoners. The King’s Fund is an important "Think Tank" concerned with health and social care, and is highly influential in informing health policy in the UK. Additional major funding has also been secured from a consortium of companies who produce products such as hosiery and bandaging for lymphoedema care.

The project is particularly important because it is a collaboration with key stake holders, such as the LSN, who are working in partnership with us to ensure that the research reflects the real needs of patients. The project also benefits from collaboration with the British Lymphology Society who have already done much work in this field, and the support of Wandsworth Primary Care Trust where part of the research will be undertaken.

What is the project trying to achieve?

Work of the LSN and BLS has highlighted that services to patients with lymphoedema are disjointed and in some cases do not exist. Care is based largely on the underlying cause of the lymphoedema, with many patients with primary lymphoedema having no access to treatment. There is a clear need for a co-ordinated approach to care which allows for services which are sensitive to the patients’ needs and reflect the governments agenda of providing care within a defined geographical area, called a primary care trust (PCT). This led us to develop the following research project.

The aim of the project is to use a process of consultation and partnership with professionals, care providers and the LSN, to develop, implement and evaluate a model of care for patients with lymphoedema within Wandsworth PCT. Part of this project will involve a wider consultation process, so that the information can be used to develop services nationally.

How will we achieve our aims?

The model will focus on the delivery of lymphoedema services within Wandsworth PCT which provides care for 260,000 patients in London. The overall study will use a number of implementation methods and will have three stages, comprising an evaluation of current care, development of the new service during which all patients will be treated, and an evaluation of the effect of the new service.

With current provision of care focussed through hospitals, patients often have to reach a stage of having a complicated lymphoedema before treatment is made available.Many of these patients may have reached this stage because of lack of early intervention leading to further deterioration and worsening of their condition. Developing an effective service will focus on ensuring early intervention, through the development of skills and knowledge in existing community staff such as GPs, community and practice nurses, and carers in social care settings. This will allow for the appropriate use of specialist lymphoedema support services that can be flexibly used according to where the patient needs to be treated. The LSN has emphasised the need for providing easy access to treatment.

This proposed approach to lymphoedema management might have important long-term consequences for the cost and effectiveness of care delivery. The project should reduce the numbers of patients suffering complications such as acute infections leading to hospital admission. In addition, effective care should help prevent some of the psychological distress associated with the condition. Correct treatment will help to prevent health deterioration and reliance on health services and social care. Of central importance to this project is the belief that effective care will improve quality of life for the many sufferers of this condition.

What are we looking to evaluate?

The design of the project allows for comprehensive evaluation of a wide range of outcomes as well as providing evidence for whether this approach to care delivery should be adopted on a wider national scale. Part of this process will be undertaken by a researcher employed by the LSN who will evaluate throughout the project the patient experience of the disease, and the care being provided at different stages. Other important health outcomes will be measured including the cost effectiveness of providing the new service.

Where are we now?

During the last six months we have been working to design the framework for consultation with a number of working groups:

Consultation: to lead on all consultation processes within the project that will include: production of a journal, national consensus conferences, and the patient experience. Education: to evaluate the education needs of health care professionals and patients, and to develop appropriate educational programmes. Outcomes: to develop research methods to capture key information. From this, to provide evidence on the effectiveness of new services. Clinical & Service Development: to describe best clinical practice, and to work with the PCT to develop an effective service design.

These groups meet regularly, and patients are represented in all working groups, with the consultation group being joint-chaired by Anita Wallace, Chair of the LSN, and Professor Christine Moffatt. By working with all partners we expect that this project will define the standard of care required for all services within the UK.

First participative consensus conference

On the 18th April 2002 the project was formally launched with our first consensus conference for which 160 people attended, including 20 invited patients together with the LSN Trustees. In a later edition of LymphLine we will summarise the findings from this conference, which was praised by the attendees. Helen Walley, Chief Executive of Wandsworth PCT described the conference as ‘extremely important’ in starting the process of change.

Taking the work forward

We are delighted to be able to report that Ealing PCT and Hounslow PCT are also working with us to develop similar services based on these recommendations, and we hope, that within the next 18 months, to be working with a number of other sites.

We would like to thank the LSN for their continued support, enthusiasm and encouragement to continue when things have been difficult. You are an inspiration to us!

Paying particular regard to Professor Peter Mortimer, the LSN's principal medical authority, she said that the charity's high level of professional excellence that had made the LSN's information service one of the best in the world could never have been achieved without his help and guidance and that of the many other health care professionals who had helped the LSN over the years. She also praised the efforts of the past and present Trustees, volunteers and staff for the high degree of devotion and energy with which they had tackled the many demands made upon them.

She said that the LSN wished to express its thanks to all the members for their continuing support and also thanked the members who had come from places as far apart as Ireland and the Isle of Wight for their presence, in what was an important landmark in the history of the charity. Anita went on to extend a special welcome to Marion Myers, Eileen Veasey and Jean Price, founder members who were present and also to Lymphoedema Sister Sian Thomason and Lymphoedema Specialist Eunice Jeffs who had helped to set up the LSN. She then introduced the two speakers, Professors Mortimer and Moffatt and congratulated LSN supporter Dorothy Jones for her superb anniversary cake, which was cut with ceremony and enjoyed by all.