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The hidden suffering of Lymphoedema patients

The hidden suffering of Lymphoedema patients
4 min read

Shadow Health Minister Lord Hunt calls on the Government to better coordinate services for sufferers of Lymphoedema  

Although lymphoedema affects over 200,000 people in the UK, and causes swelling of the limbs or body and an increased risk of infection, the disease remains a hugely underestimated health problem. Many healthcare professionals knowing little about it or its treatment and as a result, it has a significant long term impact on patients’ quality of life.

Indeed without the fantastic work of the British Lymphology Society and the Lymphoedema Support Network very little would be known about the problem. This is why my debate in the Lords Chamber tonight will draw attention to the plight of so many sufferers and the urgent need for a national strategy.

Although lymphoedema is a long-term condition that cannot be cured, its main symptoms can, with appropriate treatment, be controlled and often significantly improved.

Primary lymphoedema usually develops as a result of a genetic fault within the lymphatic system.

Secondary lymphoedema develops when the lymphatic system is damaged; this may happen following treatment for cancer, i.e. surgery or radiotherapy, but may also occur as a result of infection, severe injury, burns or other trauma.

Chronic lymphoedema has been shown to have a significant impact on sufferers, affecting the quality of their lives and causing loss of time from work. There is also a significant cost to the health service for the treatment of the most common complication, an infection known as cellulitis.

Statements sourced from patients living with the condition suggest that 80% of people with lymphoedema had to take time off work for treatment with 8% stopping working completely. Shockingly, 50% of patients in the survey by the Lymphoedema Support Network and others, suffered from uncontrolled pain and 36% had received no treatment for their condition.

Professor Peter Mortimer, Consultant Dermatologist at the Royal Marsden and St George’s Hospitals, London and the UK’s leading lymphoedema authority states that patients with chronic swelling should all expect to receive an explanation about the most likely cause of their chronic swelling and prompt referral to a lymphoedema practitioner. They should also receive ongoing care.

Sasdly, this is not the experience of most patients. And yet, early intervention is the most effective way of dealing with lymphedema. Good quality advice and support can help reduce complexity and assist patients to self-manage. Improved access to the correct information (including risk factors), treatment and self-management support could significantly reduce hospital admissions for cellulitis treatment.

Part of the problem is that the condition is not covered in the training of most doctors and nurses. Nor does the United Kingdom have regulated education standards for those working in lymphoedema practices.

There was considerable hope amongst patients when the National Cancer Action Team was asked in Autumn 2012 to put a case of need together to inform the development of a Lymphoedema Strategy for England. This resulted in an excellent paper published In March 2013, which argued the case for a national strategy.

The report concluded that existing service provision is not related to the level of patient need, lacks uniformity in approach and ignores the fact that high quality lymphoedema services can improve outcomes. The Action Team acknowledged that local improvements would not come about without a nationally agreed strategy.

The report described lymphodema as a “Cinderella‟ service which struggles for recognition. Services are generally small, 36% of them being delivered by single-handed practitioners. There are no key performance indicators or minimum education standards.

Following, the National Cancer Action Team report the NHS England Board was asked to consider developing a national Lymphoedema strategy for England to drive service improvement and ensure greater consistency and equitable delivery.  But this hasn’t happened, and the National Cancer Action Team has itself been disbanded.

Since then, little progress has been made. I will be using my debate to press the Government on the imperative of producing a national strategy which will lead to lymphoedema being commissioned at a national level; minimum standards for the training of health professional and the development of key performance indicators. Only in this way will patients get the quality service they deserve.

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