The Lymphoedema Support Network is fully committed to raising greater awareness of the condition within the patient population, the medical profession and in Parliament and is now recognised as a strong patient voice representing lymphoedema patients throughout the UK.

Political Campaigning 2001-2005

Political Lobbying Campaign - 2001

• Outline of Lobbying Campaign published in newsletter, LymphLine
• Draft letter produced for LSN members to send to their local MP's
• MP's asked to support the Lobbying Campaign by raising the issue of the general lack of resources available to patients, with the Secretary of State for Health
• MP's asked to write to local Health Authorities to establish local service provision
• General briefing letter sent to relevant Ministers, Officials and Parliamentarians with responsibilities or a particular involvement in related policy areas

Outcome of Political Lobbying Campaign - 2001

• Letters received by LSN members from their MP's and local Health Authorities
• Review of these letters indicated:
  - Inequity of services for non cancer-related lymphoedema patients
  - Lack of knowledge of number of patients requiring lymphoedema services
  - Lack of evidence based research on which to support the provision of resources
  - Standard response received from Department of Health (DoH)
• Campaign gained momentum

• The LSN placed an advertisement in the House of Commons magazine, which is distributed, to all MP's, members of the House of Lords, the Welsh and Scottish Assemblies and the European Parliament. The aim was to raise as much awareness of the condition as possible within the political arena
• The Lobbying Campaign continued to generate great interest
• MP's tabled written questions on behalf of the LSN in the House of Commons
• MP's wrote to the Secretary of State for Health raising issues on behalf of their constituents regarding lymphoedema services in the NHS
• LSN Chair, Anita Wallace and Professor Peter Mortimer, the Charity's Chief Medical Advisor, met with the Shadow Secretary of State for Health, Dr Liam Fox at the House of Commons to discuss the Charity's concerns for lymphoedema patients
• LSN Chair, Anita Wallace, met with Tom Levitt, Labour MP for High Peak, at the House of Commons to highlight the problems experienced by lymphoedema patients
• Tom Levitt, MP for High Peak, supported the LSN Lobbying Campaign by applying for an Adjournment Debate on 'The Treatment of Lymphoedema'

Outcome of Political Lobbying Campaign - 2002

• Responses to Parliamentary written questions centred on breast cancer related lymphoedema patients, with no mention of non-cancer related lymphoedema patients
• An Adjournment Debate took place in the Westminster Hall Debating Chamber on 10th December 2002, which was undoubtedly the first ever, formal mention of lymphoedema in a House of Commons debate.
• Political profile of the LSN Lobbying Campaign substantially raised

Political Lobbying Campaign - 2003

• MP's tabled written questions on behalf of the LSN in the House of Commons
• An Early Day Motion (EDM) No. 855 tabled on behalf of the LSN by Shadow Secretary of State for Health, Dr Liam Fox
• Draft letter included in LymphLine for LSN members to send to their local MP's requesting their support for the EDM
• MP's continued to write to the Secretary of State for Health

Outcome of Political Lobbying Campaign - 2003

• Response to Parliamentary written questions continued to be less than satisfactory
• EDM No. 855 attracted 139 cross-party signatures before it ceased to exist at the end of the Parliamentary session in November 2003

Political Lobbying Campaign - 2004

• EDM carried forward to current Parliamentary year by Shadow Secretary of State for Health and Education, Tim Yeo (EDM No. 28)
• Second EDM tabled by Labour MP, Tom Levitt (EDM No. 159)
• Draft letter included in LymphLine for LSN members to send to their local MP's requesting their support for the EDM's
• MP's continued to support the LSN by writing to the Secretary of State for Health
• LSN wrote new EDM to highlight launch of a new campaign targetting Primary Care Trusts

Outcome of Political Lobbying Campaign - 2004

• Early Day Motions Nos. 28 and 159 attracted substantial cross-party support and between them gained 244 signatures before they ceased to exist at the end of the Parliamentary session in November 2004
• Letters received by LSN members from Department of Health (DoH) indicated:
  - Greater awareness of both cancer and non-cancer related lymphoedema
  - A recommendation from the DoH that patients should take up the issue with Primary Care Trusts (PCT's)
• LSN EDM (No. 107) tabled with cross-party sponsorship at beginning of new Parliamentary year in November 2004
• LSN launched new campaign to target Primary Care Trusts

Political Lobbying Campaign - 2005

• Draft letter included in LymphLine for LSN members to send to their local MP's requesting their support to new EDM (No. 107)
• The LSN secured the tabling of a fifth EDM (No. 201) with cross-party sponsorship, following the return of parliament
• Draft letter included in LymphLine for LSN members to send to their local MPs requesting their support to the new EDM (No. 201)
• Alan Meale, Labour MP for Mansfield, tabled a further EDM (No. 551), again with cross-party sponsorship
• Draft letter included in LymphLine for LSN members to send to their local MPs requesting their support to the new EDM (No. 551)

Outcome of Political Lobbying Campaign - 2005

• EDM (No. 107) gained 119 cross-party signatures before it ceased to exist with the dissolution of Parliament when the general election was called

Working with Primary Care Trusts (PCTs) 2004-2014

Working alongside its Political Lobbying Campaign, the LSN began formulating plans for a new campaign to target all Primary Care Trusts (PCT's) and Strategic Health Authorities (SHA's). The Government states it is keen to ensure that all patients have equal access to treatment in the NHS and say they have provided substantial extra funding to help ensure this happens. It is the role of SHA's, in partnership with PCT's, to decide what services to provide for their populations, including those with lymphoedema, as they are best placed to understand local health needs and commission services to meet them. Consequently, the LSN developed a strategy for a new campaign to increase the awareness of lymphoedema and its treatment within the PCT's.

The British Lymphology Society (BLS) and Professor Peter Mortimer gave their full support to this course of action. The LSN initially secured the valuable support of two of the UK's leading cancer charities and also gained the highly influential endorsement from three of the Royal Colleges. The LSN now has support for this patient-led initiative from:

The following is an outline of progress to date:

PCT Campaign - 2004

• A letter signed by LSN Chair, Anita Wallace and Professor Peter Mortimer, the Charity's Chief Medical Advisor sent to all 302 PCTs and 28 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
  - The logos and quotes from supporting organisations
• Draft letter produced for LSN members and supporters to send to their local PCT
• The British Lymphology Society (BLS) sent a supporting letter to all PCTs and SHAs

In particular, the LSN has highlighted:

• 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

Outcome of PCT Campaign - 2004

• Early responses from SHA's and PCT's were from areas that already provided some form of service
• Letters received by LSN members from PCT's

PCT Campaign - 2005

• A letter signed by LSN Chair, Anita Wallace, was sent to PCTs together with a copy of EDM (No. 107) to highlight the level of political support to the PCT Campaign. The discrimination between equitable treatment for cancer and non-cancer patients was also highlighted.
• LSN extended its PCT campaign to include Scottish NHS Health Boards:

- Draft letter produced for LSN members and supporters to send to their local NHS Health Board
- Draft letter produced for LSN members and supporters to send to their local MSP, requesting their support to the campaign

Outcome of PCT Campaign - 2005

• Out of the 302 PCTs, 38 responded to the LSN directly and a further 26 responded to individual members.
• 8 PCTs highlighted new or further developed services although one of these was for cancer related lymphoedema only.

Mapping of PCT services - 2005-2012

• Utilising all previously gathered information, the LSN began to map services in PCTs against estimated prevalence of the condition. From there we highlighted areas that were under serviced and began to work with those PCTs who expressed a wish to improve the situation.
• The LSN worked alongside 6 PCTs to develop their services to provide more support for patients in their areas.
• The LSN introduced a new category of membership for Health Care Professionals. This category offered ongoing support and information to HCPs.
• Individual members who were experiencing difficulties accessing services were also supported to write to their MPs and PCTs to gain individual funding or out-of-area referrals for treatment.
• The LSN produced an Advocacy Pack for use by individual members.
• The LSN were active members of the National Cancer Action Team lymphoedema strategy group which produced a high level report to the NHS on the current state of lymphoedema care in England and pushing for the development of a National Strategy.
• The LSN lobbied the National Institute for Clinical Excellence (NICE) to produce national standardised clinical guidance on the management of lymphoedema gathering in excess of 3,500 signatures in support.

Outcome of campaigning and advocacy work 2004-2014

• Some success was demonstrated in 4 PCTs who, with our support developed services in their areas.
• Over 60 HCP members were recruited.
• The Advocacy Pack was well received and utilised by individual members.
• NICE declined our request to produce national clinical guidance.

Current campaigning and Advocacy work 2014 - present

In April 2014, as a result of the Health and Social Care Act, significant changes were made by the government to both the social care and health systems. The existing 302 PCTs were replaced with 211 Clinical Commissioning Groups (CCGs). These groups were given responsibility for commissioning suitable services for their localities and were led by local General Practitioners and other Health Care Professionals with representation from lay people. Where, as in the past, it was vital to campaign nationally and at Parliamentary level for change, the situation radically altered with little national input on health-related matters. This meant that the need for change had to be demonstrated at local level and with support from local people. This has been a challenge for the LSN but a plan was devised to gather the necessary information and facilitate a localised agenda for change. This does not mean that we will never challenge things at a national level, but as a small organisation we have to focus our energies on work that we believe has the biggest impact for those who are living with or supporting someone with lymphoedema/chronic oedema.

• To produce a comprehensive directory of all 211 CCGs including the likely lymphoedema prevalence, GP practices, MPs, Clinical Leads, Chairs and lay members.
• To match current service provision to each CCG.
• To make Freedom of Information requests to each CCG requesting information about their lymphoedema commissioning for both cancer and non-cancer related lymphoedema.
• To work collaboratively with other key lymphoedema organisations including the British Lymphology Society to challenge those CCGs where services are unsatisfactory.
• To update the LSN Advocacy Pack to support those members who are in an under-serviced area to challenge local decision makers.

Progress to date

• The Directory of CCGs is complete.
• Current service provision has been mapped against CCG geography.
• Freedom of Information requests have been submitted to each CCG and the replies are being collated.
• The LSN has joined with other key lymphoedema organisations to push the agenda for better lymphoedema services in England.
• The LSN Advocacy Pack has been updated.