NHS Lymphoedema Services in England

NHS Lymphoedema Services in England – the State of Play

This article is taken from the Autumn 2019 issue of LymphLine, the LSN’s quarterly newsletter available to all LSN members. For details of how to become a member, click here.

As most of you will know, one of the things that the LSN provides to both patients and clinicians alike is access to the service directory that we hold. This database holds information about NHS lymphoedema services, where they are, what kinds of lymphoedema they treat, who the lead practitioners are and what parts of the country they serve. This allows us to advise people where their local service is (assuming they have one!) and how they can be referred, or to advise GPs and other clinicians where they can access help for their patients.

The database is ‘live’ meaning it is modified as we become aware of changes, but each year we carry out a major update where all clinics in the directory are sent a form to complete; this is followed up with a phone call to make sure that we have the most up to date information possible. Although not the main reason for the exercise, it is also a useful snap shot of where we are in terms of services.

After our update in 2018 we had 202 NHS provider clinics in England. Our 2019 update shows a net loss of 24 services leaving us with 178 services.

These 178 services are made up of the following types of services:

  • 119 see individuals with lymphoedema of any cause
  • 51 only see people with cancer related lymphoedema – 33 see those with any type of cancer related lymphoedema, 16 see breast cancer patients only, 1 is specific to gynaecological cancer and 1 skin cancer.
  • 8 see only people who have lymphoedema that has not been caused by cancer treatment

Although we are showing a net loss of 24 services over the period we have actually seen 28 services close, some of these have amalgamated with larger services so patients are still covered; 3 new ones have opened and one has divided across an area, so in essence, 1 clinic became 2. The most common reason for closure, we are told, is the practitioner leaving and not being replaced – a symptom of the lack of suitably qualified practitioners.

It is a real challenge to know what to do to try and influence this situation, particularly in such unsettled times for the NHS. There are some areas where we believe members can have an impact, the first two of the following bullets are down to you and the others will form part of our discussions for future work plans for the LSN:

  • Appreciate your services and shout about them – write to your CCG saying how good they are, nominate them for local champion awards, write thank you letters to their managers. It is a lot more challenging to shut down a service that is not invisible!
  • Contact the LSN if you become aware that your service is under threat in order that we can work with you and the clinic to lobby for continued service provision.
  • Support people living with lymphoedema to become experts in self-management.
  • Educate GPs about the condition, so they can diagnose and refer people early, making treatment easier, and can also support those with stable lymphoedema in order to free up clinic time for those in most need.
  • Provide information and support to those CCGs who are looking to develop services in their areas.
  • Improve the amount of information that training student doctors, nurses and other health care professionals receive about lymphoedema during their professional training.
  • Raise awareness of lymphoedema and the lack of equitable care for those living with the condition.

It is always so disappointing when we have been working so hard for improvements to see services declining but it is not all bad news – the LSN has sent out information and offered support to 4 CCGs so far this year who are looking to develop or improve lymphoedema care, so let’s hope this time next year we can report an improvement.