To: Dame Barbara Hakin, National Director - Commissioning Development, NHS England

Save the NHS £100 - for every £1 spent on lymphoedema treatments

UPDATE: The campaign is to support an application to the Prescribed Specialised Services Advisory Group and we would like to deliver it before they meet on 15 October 2015.

Save the NHS £100 - for every £1 spent on lymphoedema treatments

Develop a lymphoedema strategy for England

Why is this important?

Lymphoedema is a long-term condition defined as tissue swelling due to a failure of lymphatic drainage. It can affect any part of the body. (NCAT 2013)
An estimated 240,000 men, women and children in the UK have lymphoedema, many of whom remain undiagnosed and untreated (LSN 2014). With an ageing population and increasing obesity, this figure is set to rise.

Money is currently being wasted treating the symptoms of unmanaged lymphoedema (NCAT 2013).

For every £1.00 spent on lymphoedema treatments that limit swelling and prevent damage and infection, the NHS saves an estimated £100 in reduced hospital admissions. (NCAT 2013)

National strategies for lymphoedema services have already been established in Wales, Northern Ireland and Scotland. (NCAT 2013)

There is no national tariff available for lymphoedema - although the British Lymphology Society have published a National Lymphoedema Tariff Advisory Document which sets out proposals for achieving this. (BLS 2014).

Once treated and controlled; lymphoedema can be self-managed with the right support and within a good clinical infrastructure. (NCAT 2013)

There are no minimal educational standards for lymphoedema practitioners, although the International Lymphoedema Framework project sets out a skills framework. The British Lymphology Society has also published a document setting out "Population Needs assessment and professional roles in the care of lymphoedema" (BLS 2014) and a "Treatment Pathway for Lymphoedema Patients with a Body Mass Index (BMI) equal or great than 40kg/m2".

The Lymphoedema Support Network (LSN) has also produced an award-winning GP training module on lymphoedema.

75% of lymphoedema is non-cancer related and 25% is cancer related, therefore it cuts across specialities. (NCAT 2013).

Cellulitis is an acute spreading inflammation of the skin and subcutaneous tissues characterised by pain, warmth, swelling and erythema. (BLS/LSN 2014).
Admissions to hospital with cellulitis, the most common complication of lymphoedema, are a significant burden on local health care services. The cost of hospital admissions for cellulitis in Derbyshire, Nottinghamshire and Lincolnshire was approx £4.1m in one year (population of 2.5 million). (NCAT 2013).

The British Lymphology Society has been writing to NHS England at regular intervals for over a year to try and address these matters - to date we have received no response. Lymphoedema could happen to any one of us and common sense should guide NHS England policy - conservative treatment and prevention is not only preferable to; but cheaper than, the present state of affairs.

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Reasons for signing

  • I have suffered this nightmare since being a child. It's never been recognised by any one of several doctor's. I now suffer a lot of pain due to it. My last diagnosis was said to be arthritis ?.Its like banging your head of a wall looking for a diagnosis on the NHS. I believe it's being ignored and left until people's conditions deteriorate badly.
  • My Mother is currently going backwards and forwards to be treated.mi came across this illness and advised her to see the GP silly thing is I think I may also have this.
  • Secondary Lymphoedema is the biggest hurdle to a normal life after cancer treatment.

Updates

2015-01-28 22:49:10 +0000

1,000 signatures reached

2014-12-23 05:41:35 +0000

500 signatures reached

2014-12-12 23:18:56 +0000

100 signatures reached

2014-12-12 18:46:27 +0000

50 signatures reached

2014-12-12 14:35:46 +0000

25 signatures reached

2014-12-12 12:27:57 +0000

10 signatures reached