Significant swelling can be very disabling; it affects mobility, dexterity and quality of life and carries the emotional burden of altered body image. The condition is poorly recognised and treatment, particularly for non-cancer related lymphoedema, can be very hard to access. Yet in many cases the main symptoms, namely swelling, skin changes, infection, reduced mobility and psychological distress can be greatly improved and controlled and in other cases the condition may even be prevented.
The Lymphoedema Support Network (LSN) carried out a survey recently among its 4,000 members and the results have led them to launch, in partnership with the British Lymphology Society (BLS) and the International Lymphoedema Framework Project (ILFP), an awareness campaign aimed at the general public and at health care practitioners.
The three most important concerns raised by LSN members were:
- The lack of knowledge amongst general practitioners – members wanted them to be more aware of the condition and how to treat it.
- Inequity of care – they want every patient to be able to access specialist advice and care quickly and easily.
- Lack of knowledge within the general public – members want to highlight the condition and the incredible impact it can have on those living with it.
The LSN is actively working to tackle these priorities. As Karen Friett, Development Manager of the LSN explains ‘We are launching a ribbon and wristband campaign in March to try and raise public awareness and to give our members and others living with lymphoedema a sense of community to combat the isolation of this disfiguring condition’.
The LSN is also holding its first patient conference alongside the International Lymphoedema Framework Project conference at Ascot in April.
Karen added: ‘The International Conference is very exciting and is helping to put lymphoedema on the national and international agenda. Of course, the most exciting part for us is the patient conference. For the first time, patients from all over the country will have the opportunity to meet together, learn about self management issues and share experiences alongside those professionals who are working so hard to help them.'
The BLS is working together with the LSN, ILFP and lymphoedema patients to create information for General Practitioners about lymphoedema and what can be done to support those living with it.
Jan Simmons, Macmillan Lymphoedema Project Manager at the North London Cancer Network and BLS member, says ‘Using the expertise of lymphoedema specialists, input from General Practitioners and the experiences of patients living with the condition, we are compiling simple to follow advice for GPs called five things every GP should know about lymphoedema focussing on how to recognise lymphoedema, the causes of the condition and how to treat it, the consequences for patients if the condition goes undiagnosed or untreated and how to support patients living with lymphoedema. We know GPs want to help patients and our aim is to make that as simple and effective as possible.’
In addition the campaign will aim to raise the awareness of how to manage the condition amongst those with the lymphoedema, advice for those at risk of developing it and set some aspirational aims for lymphoedema care nationally.
Lymphoedema is an under-recognised and poorly supported condition in many parts of the United Kingdom. Those living with it not only have to live with a challenging long term condition but also in many cases have to fight to gain access to the treatment that will make their condition bearable.
The LSN, BLS and the ILFP and cancer networks are working collaboratively to try and help and are asking all health care practitioners to support them and lymphoedema patients by ensuring that they take just a few minutes to access the information about the condition.