UK Guidelines

Improving Outcomes for People with Sarcoma: the UK Sarcoma Guidelines

Roger Wilson

[Editor's Note: Roger Wilson is a leiomyosarcoma survivor and an activist for sarcoma advocacy in the UK. You can read about him on the Cancer Voices website by clicking here. Roger is also the founder and maintainer of the Sarcoma UK website.]

Editor's Introduction: In the February 2005 issue of ESUN, Roger wrote an article about Sarcoma Service Guidelines for the UK, which were then under development. The Guidelines were just released in March 2006 and we asked him to comment about them. His earlier article can be accessed by clicking here. The Guidelines can be downloaded from the UK’s National Institute for Health and Clinical Excellence (NICE) website by clicking here. Roger’s comments follow.

When I started to work as a sarcoma advocate in 2002 I came into contact with some of the UK's leading specialist doctors. It came as something of a shock to realize that their feelings about the standards of care for patients in the UK were far worse than mine. I began to realize that I had had a relatively easy journey during my 20 months of treatment for three tumors, including a 'whoops' procedure, two surgical operations totaling nine hours, and six cycles of chemotherapy. I had, at the very least, been routed quickly into a specialist unit and there is little doubt that I am alive today because of an oncologist who acted quickly because he saw past superficial symptoms, knew exactly what we were facing and what he needed to do.

It became very clear to me that others are not so fortunate. Despite all the best efforts of the specialist treatment centers to have all sarcoma patients referred to them they tend to see all the difficult cases, and only a proportion of the 'simpler' cases - at least until metastases are diagnosed. Some cancer centers had been dabbling with sarcoma treatment to the extent that they accepted that 50% or so of patients would become metastatic and their policy when that happened was completely nihilistic. Patients were sent home into palliative care and to die.

Changes in the UK’s National Health Service (NHS) cancer services during the last five years at least mean that happens much more rarely but getting a common and consistent set of standards in place, both for the structure of the NHS in treating sarcoma, and for the treatment itself, was an obvious priority. Fortunately a program for the development of service structure guidance for all cancers had been started in 1997 and after the 15 or so most common ones had been completed it was sarcoma's turn.

The UK's NHS is the world's third largest employer, only beaten in size by the Chinese army and the Indian railways. The NHS in the UK is actually four different organizations. England, Scotland, Wales and Northern Ireland and each run their own versions of programs. One of the biggest differences is that in Scotland and Northern Ireland gastrointenstinal stromal tumour (GIST) is treated according to the license label, in England and Wales special guidelines exist which deny treatment to patients who relapse on imatinib (Glivec). However Welsh local funders support their patients despite the guidelines, some English ones do too, but many do not.

After the usual bureaucratic preliminaries the first meeting of the Guidelines Development Group was held in February 2004. The group included specialist surgeons, medical and clinical oncologists, a very senior sarcoma pathologist, a delightfully perceptive radiologist, a GP who had actually suspected sarcoma, several representatives from NHS fund-holding and commissioning groups, and three patients, myself (a soft tissue sarcoma patient), Janine Broadbent (an osteosarcoma patient) and Judith Robinson (a GIST patient).

The Group was chaired by Dr. Joe Kearney, a public health specialist who had been involved in commissioning and auditing sarcoma services in London, and the clinical lead was Mr. Rob Grimer, a senior orthopedic oncology surgeon from Birmingham, and one of our leading sarcoma research doctors (see the "Endnote: Mr. and Dr."). Other key members included Prof. Ian Judson, who is both a sarcoma specialist oncologist and one of the UK's leading new drug investigators.

Over the following 18 months we guided a number of literature and systematic reviews which pulled together evidence to answer questions which we discussed and devised. We thought we knew most of the answers but having that confirmed by evidence was going to be the surest way to get changes in the system. We also had detailed discussions with experts in specific areas, especially surgeons who handled head-and-neck sarcomas, gynae and GI sarcomas, and lots of discussion about retroperitoneal sarcomas generally.

The treatment of bone sarcomas in the UK is generally good. This is because the NHS funds their treatment from a central budget, but only as long as treatment is in one of six specialist centers. It means that when a bone sarcoma is suspected it is usually referred to one of these centers. The problem is getting doctors in local hospitals to suspect sarcoma.

With extremity soft tissue sarcomas the problem of 'dabbling' came up. Research for the Guidelines Development Group revealed that over 50 hospitals had surgically treated five or more cases during a recent year, but only 10 of them had treated more than 10 cases. Not a recipe of building expertise.

With retroperitoneal sarcomas, including GIST, matters were even more disturbing. During the time the Group was sitting one of its members, surgeon Mr. Meirion Thomas, was referred a patient who had been investigated for over four years for his increasing weight and uncontrolled abdominal bulk. When investigated at the specialist centre a very large sarcoma was identified which, when it was removed, weighed 55 pounds.

One of the fascinating things about the way the group began to work was that the specialist doctors and patients quite often were seeking the same things. Of course the final outcome is not quite the perfect world we would all like to see but it will be a whole lot better than what exists. The focus is on trying to ensure that patients with a strange lump are seen by someone with experience of diagnosing sarcomas much earlier in their disease. And then the priority is getting those patients, once diagnosed, into the hands of a suitably experienced surgeon working as a member of a multi-disciplinary team so that whatever the treatment that patient needs can be met. We all know that good surgery can be a cure, or the foundation of a cure - increasing the cure rate is an important part of what we were about.

Have a read of the summary recommendations document, and if you are a real glutton for detail the web files include the evidence that was gathered together with the analysis of that evidence.

The next step is treatment guidelines. Unfortunately we have been told that the NHS is unlikely to free up resources to develop these for at least five years so the discussion is now underway about doing it through the British Sarcoma Group (BSG). The BSG is the doctors' association which we started up in 2004 (I say we because I am on the organizing committee). We have a close relationship with the National Cancer Research Institute (NCRI) and the network (the equivalent of one of the regional US collaborative groups) which manages national clinical trials. Knowing what standard treatment is, is of course necessary if clinical trials (and other care based research) are to initiate change for patient benefit.

The National Cancer Research Institute has a Sarcoma Clinical Studies Group which is responsible for developing and approving national studies (including clinical trials) for sarcoma which are to be run in NHS hospitals. However with only 2,500 patients of all kinds each year the UK does not have the numerical mass for creating the statistical significance which can impact on treatment decisions, on its own. One of the latest trials initiated in the UK is the European and American Osteosarcoma Study Group (EURAMOS), a collaboration between the UK, Europe and the USA for the treatment of osteosarcoma.

Since it was created in 1948 the NHS has become the biggest political engine in the UK. With an annual spend which is 50% more than the defense budget, and an annual deficit, it represents a management problem beyond even the abilities of the most mature MBA (whether from London, Harvard or Insead) and some of them have had a go at it!!

So we have come a long way, but there is much further to go. We will, somehow or another, move the NHS monolith to recognize that patients with sarcoma are not just an inconvenient minority but real people with real problems who deserve the same kinds of compassionate and competent care that breast cancer patients already receive. The advance in their care is due to some stunning advocacy and representation over a long period of time - we can learn from them.

Endnote: Mr. and Dr.

The British medical profession observes the unique tradition of granting its fully qualified surgeons the title of Mr. The tradition goes back to the days of the Royal Navy in the 18th and 19th centuries. Surgeons on warships in those days were little more than butchers. Limbs were frequently amputated because when they were damaged by gunfire or by splinters from the wooden ships in battle, the wounds rapidly became septic and these were the days before antibiotics. A clean cut, sealed with tar, at least gave the sailor a chance of living. As unqualified men, the surgeons came from all sorts of backgrounds, they were only ever called Mr. Some of the richer ship captains tried to engage a real doctor, a physician, who was of course known as Dr, but who had to perform the same surgical tasks among his duties.

As the medical profession began to formalize its training and require more extensive knowledge during the middle years of the 19th century many of its leading practitioners were both Doctors and surgeons, the latter skill having been learned the hard way, by practice. They sought to formalize the training of surgeons and eventually an aspiring surgeon had to become a doctor first. There were, however, many very good surgeons practicing who had never qualified as a doctor and their skills were still needed. They could not be thrown on the scrap heap and did not seek to be physicians, so had to remain Mr. To ensure that they could not be discriminated against, all surgeons were granted the title Mr, whether they had qualified as a doctor or not.

Today this tradition lingers. A surgeon in the UK starts his studentship as Mr, qualifies as a doctor and the title Dr, and when fully qualified as a surgeon, is then elevated to the distinction of Mr.

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