Health: Lymphoedema

Baroness Smith of Newnham Excerpts

Wednesday 9th September 2015 Lords Chamber

[Baroness Smith of Newnham (LD)]

My Lords, I am most grateful to the noble Lord, Lord Hunt, for raising this issue for debate today. Many people have no idea what lymphoedema is. When I saw that this was to be raised as a Question for Short Debate, over the course of the summer I said to various people, including Members of your Lordships’ House, “I am speaking in a debate on lymphoedema”. The reaction of most was, “What is that?”, and in the case of someone I was speaking to last week, “What a waste of time. Has the House of Lords not got anything better to do than talk about medical things? Surely that is a waste of taxpayers’ money”. I might have added the last sentence about taxpayers’ money, but there was a sense of incredulity that noble Lords would talk about a medical issue. Clearly, we cannot spend all our time talking about specific medical issues, and yet as we have heard, particularly from the noble Lord, Lord McColl, lymphoedema is a lifelong condition that needs greater awareness and earlier diagnosis. Sufferers need to be aware of what needs to be done.

I declare an interest as someone who has secondary lymphoedema. I do not have it from having had cancer but from having had an infection in the foot. Last week, when I told my GP, who has been a doctor for 20 years, that I would be speaking in a debate, he said, “Yours is the first case I have seen of someone with lymphoedema following an infection”. That is part of the problem. A cancer sufferer who has their lymph glands removed is immediately told, “There is the potential that you will get lymphoedema. Here are the things you need to look for”. That will include massage, compression and so on. It is not so easy to diagnose a person who suffers from secondary lymphoedema as a result of surgery.

In my case, the diagnosis came almost by chance, as I was perhaps a bit too vain. My foot was puffy, although not particularly sore and there was not any infection, but I kept going back to the doctor. Eventually, a GP said, “It has been puffy for a year. We will send you for further diagnosis”. I was sent to a lymphoedema clinic in Cambridge. From what I have heard today, Cambridge is clearly a beacon because the clinic has several lymphoedema nurses. They all seem to know what they are doing, whether or not they have been taught to a common framework. The clinic went through the diagnosis and eventually said, “You can go and we will try to find out what the problem is”. The answer was that there are no lymph nodes in my foot because somehow they had been killed.

The formal diagnosis is fascinating but not something that most people will have to go through. Obviously, I went online to find out more about lymphoedema and began to realise that it is potentially a hugely dangerous, lifelong condition. It will not immediately kill you, so one may understand to some extent those people who said, “Why is the House of Lords wasting its time talking about this condition?”. For most people, it will not be life-threatening but the complications need to be considered carefully. If it is not managed in the way referred to by the noble Lord, Lord McColl, there is a danger of severely thickened limbs and loss of mobility. There is also the danger of cellulitis, the repeated need for antibiotics and a potential need for intravenous antibiotics. Clearly, the NHS does not want to have to deal with more in-patients with conditions that are preventable, which is an issue. It is almost impossible to prevent lymphoedema in the first place but there are ways to ensure that its aspects associated with further infection can be minimised.

As someone who was diagnosed in my 30s, I particularly would like to make a case for talking about how we raise awareness for younger sufferers. People may say that being in one’s 30 is not very young but, relatively, if you are diagnosed in your 30s and told that you should wear a surgical stocking—please do not look but I am not wearing my surgical stocking—it is not something that you really want to do. If we think about people in their teens or their 20s being told that they have to wear a compression garment for something that does not immediately seem to be a very serious condition, their immediate reaction is, “Yeah, yeah, maybe”. They will not do it unless someone is able to make clear why it is so important.

There should be greater awareness and information that is not only on cancer sites. When one explores where lymphoedema comes from and what it means, much of the information is on cancer sites, which is also true for the information given to us by the Lords Library. Many pages do not come from general sites but from sites associated with breast cancer. You would not think to look there if you had not had breast cancer. The clinic that I went to in Cambridge is collocated in a hospice. Again, you go along and think, “I have a condition that appears to be relatively minor and I’m going along to a hospice”. Again, that was not the best introduction to how to deal with a condition.

The issues that one needs to think about on prevention or ensuring that development does not get worse are ones that most people do not necessarily want to think about on a daily basis. If you have some conditions that you are aware of and you take a tablet every day, that is fine, but to avoid lymphoedema getting worse you need to avoid infection, to ensure that you do not get stung or cut, that you do not do many things that just happen in everyday life. If most people fall over, get a sting or cut themselves, it does not matter: they heal up very quickly. If they have lymphoedema, the potential infection or the sting does not get out of their system. They need to ensure that they minimise the opportunity of that happening. But if you are in your 20s and you want to go off on holiday, you do not want to pack steroid tablets, antihistamines and antibiotics in case you get stung or cut, but those are the sorts of things you need to think about. Something that makes awareness available for young sufferers would be beneficial—that makes GPs think about non-standard sufferers of lymphoedema, not people who have had cancer or cancer surgery.

Would the Minister consider whether manual lymphatic drainage could be part of the strategy? It is an extremely effective way to deal with the symptoms of lymphoedema and to begin to manage the condition. It can go alongside compression. However, it is not always available on the NHS. If you can afford to go to a private practice to have treatment that is fantastic, but ideally it should be available. If there is to be a national strategy, would the Minister consider making manual lymphatic drainage available for those sufferers who would benefit from it?