ilegx: an initiative to address a rising major amputation rate in Europe

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By Roger Greenhalgh

An inaugural meeting of the ilegx initiative was launched at Imperial College at the weekend of 25–26 October 2008. The initiative took place under the organisation of BIBA Conferences, which runs the Charing Cross Symposium series. However, it was very much the creation of three interdisciplinary programme directors, Dr Michael Edmonds, diabetologist, Kings College Hospital, London; Professor Gunnar Tepe, interventional radiologist, Tuebingen, Germany; and Dr Dieter Mayer, vascular surgeon and wound care expert, Zurich, Switzerland. The initiative was led in BIBA by Antje Kiewell, who has a background of “blue chip” marketing at Procter & Gamble. Those skills have been tested to the maximum on this initiative.

From the medical point of view, I became supportive of this concept when, to my horror, I realised one day that I had led a Regional Vascular Service in West London for some 25 years and the amputation rate is rising alarmingly. It is really upsetting to have to accept that the population is less well served now than when I was trained. And I thought I was saving legs all the time! I went to sleep at night pleased to have served my patients and with various reconstructions, kept their legs on. Were the vascular surgeons not crowing that even if we do not prolong life, our patients die “with their boots on.” It seems not. I was shocked and needed to investigate why and if this really is the case.
Antje organised by teleconference with the busy programme directors a programme to throw light on this matter. It soon emerged that the initiative would be pan-European to see if the problem is widespread and to see if the cures for the problem in each country are similar or contrasting. There was to be a diagnostic day on the first day and a management day after that .It was agreed that the programme directors would act as chairmen and also summarise the findings at the end of each day.
The speakers were carefully briefed and stuck to the systematic approach. In particular the audience appreciated that the speakers went logically through the sequence of causes of leg and foot ulceration .The diagnostic “wheel” was frequently quoted and acted as a spur to logical coverage of diagnosis in this sequence.

100 legs lost per week in the UK

Michael Edmonds addressed almost 300 delegates from 24 different countries and from many disciplines including vascular surgeons, diabetologists, endocrinologists, dermatologists, neurologists, podiatrists, orthopaedic and plastic surgeons, and wound care experts, as well as vascular scientists and nurses. He opened the ilegx Consensus Summit Meeting with these words: “In the UK, 100 legs per week are lost in diabetic patients,” quoting Dr Douglas Smallwood, Chief Executive of Diabetes UK. “Conservative estimates are that 50% of these are preventable. This is not acceptable.” It soon emerged that the rise in major amputations is by an increase in diabetic patients. Such patients have an increased chance of having arterial insufficiency and once an ulcer occurs, it can extend to amputation very fast indeed. The sugar laden tissues are a good culture medium for infection and it is vital to make the diagnosis rapidly. The faculty explained that diagnosis is achieved in the age-old way of history, physical examination and special investigations. There is a majority chance that an ulcerated foot has a vascular, arterial, venous or lymphatic cause. Vasculitis was discussed, and the need to involve a dermatologist for this diagnosis emerged and with it the need for biopsy.

Urgent referral needed

The second day began with prevention and I had a serious shock as a member of the audience. It simply appears too much to expect that a diabetic patient should be diagnosed earlier and the course of the disease altered. I had thought this would be the way. No. It seems the best we hope for is for early referral once an ulcer has occurred. This was big news for me and raised the issue of why these patients are not referred sooner, if this is focally important!
Apparently about two ulcerated feet per year are likely to be seen by a general practitioner and the family doctor does not pay enough attention to something that occupies so little of his time. What is needed is urgent referral. There is apathy and this is not confined to one country but is widespread. On top of this, the prevalence of diabetes is increasing along with rising obesity in many Western countries.
There is even talk of rewarding the doctor who does not refer to secondary care! In Switzerland we heard that there is endless resource available for amputation but no reimbursement for preventative podiatry and sensible footwear. That is not all of the problem. There is an inbuilt obstruction to cross referral as this costs money and so interdisciplinary working is not encouraged. It is surmised that the rising amputation rate is because of such issues, late referral of diabetic ulceration of the foot and lack of referral to an open access interdisciplinary approach. Dr Edmonds champions this approach but I question if it is as easy now to set this up as it was when he started it. The National Health Service (NHS) has changed in the UK. At about the same time as Michael Edmonds was setting up his diabetic open access clinic, Charles McCollum, then at Charing Cross with Christine Moffatt, set up the Riverside Venous Ulcer Service. This had a similar open access approach and encouraged nurses to refer to nurses from the community to the specialist centre, in this instance, the Regional Vascular Service at Charing Cross.
So, at the inaugural ilegx meeting, we learned that ulcers should be referred early and we learned that upon patient arrival in hospital, it is imperative that the circulation should be assessed and that it should be ascertained if the patient is diabetic and especially if there is infection in the foot or leg and if the blood supply is adequate. The action step is to control infection that moment not to delay it. Debridement should be adequate and this can imply minor amputation such as ray amputation. Above all, the infection must be controlled at once and the wound cleaned and washed regularly. Antibiotics also play a role. If blood flow is compromised it should be corrected, as debridement is done not in stages. It would be helpful if there were data to show that early referral is beneficial and it would be likewise good for proof that interdisciplinary working does benefit the patient. Much is anecdotal but we must start somewhere.

The interdisciplinary wheel

The audience appreciated that Antje Kiewell had summarised the disciplines that could be involved in various pathologies based upon what the programme directors had fed to her before the meeting. This was in the form of a moving wheel, which was appreciated. This enabled the group at least to have a system to add to and update. It is a type of algorithm that enables the specialist to be reminded of which disciplines might have an interest given a particular diagnosis.
This was just a start. At least it has been discussed and I feel better that there are others who now share my disappointment over the rising amputation rate. It is Europe wide. It is mainly from late treated diabetes. We should be able to save 50% more legs than we do. It would not just be better for the patient. It would be cheaper. Is that the key? I hope not! We should stop this trend for people and mankind not for bankers. These poor souls are not part of the “credit crunch.” They could be yours and my loved ones.
I will end with an example that is vivid in my memory. My son, Stephen, called his grandfather, the father of my wife, Karin, “Biba.” This “Biba” had a stroke and lost sensation in the paralysed leg. I am not sure he had diabetes at the end but he definitely had to take too much dead weight pressure on his heel. I saw him in his Alpine village hospital bed whilst I was on holiday and reminded the nurses to keep pressure off the heel and cushion the foot. Debridement was delayed and he came to major amputation and died soon after. That was correctable. It should not have happened. Stephen called his company after “Biba.” There are thousands of instances of “Bibas” and we need to stop it. An ulcer on the foot can lead to amputation. ilegx says that interdisciplinary skills should be deployed and this should save 50% of the amputations at least.