Sarcoma Service Guidelines in the UK

by

Roger Wilson

[Editor's Note: Roger Wilson, the author of this article, is a leiomyosarcoma survivor. You can read about him on the Cancer Voices website by  clicking here.]

Ask anyone from the UK about their experience with the National Health Service (NHS) and the tales vary from the very bad to the very good. It is sad to say that sarcoma patients are more likely than not to have tales about the bad rather than the good.

The biggest problems are about getting a diagnosis in the first place. Generally the stories start to get better as sarcoma patients find their way through the system to an experienced surgeon or oncologist. However some still do not get through. Even in the week before Christmas 2004, I found myself talking to a patient with advanced disease who, after three major surgeries and two years of medical attention, has still not seen a sarcoma specialist.

Two years ago a group of clinicians and patients came together to see what we could do to make things better. Fortunately the NHS cancer services have been going through a major overhaul since 2000 and although sarcoma hasn’t been high on the list of priorities (inevitably when there are so few patients) there were influential ears ready to listen.

The NHS regulator, the National Institute of Clinical Excellence (NICE), is charged with reviewing and establishing standards based on evidence. It started work early in 2003 on revising and re-writing the guidance for family doctors on what to do when cancer is suspected. Later in the year it began working on guidance on the structure of specialist sarcoma diagnosis and treatment services. At the same time another part of the NHS began reviewing the way in which the NHS funds the treatment of bone sarcomas. All three of these bodies of work are coming together so that by the end of 2005 we should start to see a new awareness of sarcoma and better processes in place which will help ensure that the best possible treatment is received by all patients.

From April 2005 the NHS will expand its central funding of bone sarcoma services involving endoprostheses and prosthetic limbs to five treatment centres. Currently there are two. As most NHS funding is controlled locally rather than centrally this will help reduce differences in the standards of care received by these patients – many of which are children and teenagers.

During 2005 the new NICE guidelines for suspected cancer for family doctors will come into force. On average a general practitioner (GP) sees eight or nine new cancer cases each year, but only one sarcoma case during their whole career. Given that GPs are the first point of healthcare contact on virtually every issue there is, it isn’t easy to get sarcoma’s profile high up on their learning agenda.

Patient involvement has been most evident in changes in the guidance for soft tissue sarcoma. The existing guidelines were published in 1999. In them, a GP is advised to refer a patient for further tests if there is a soft tissue mass which has one or more of the following features: size greater than 5cm, and/or painful, and/or increasing in size, and/or deep to fascia.  We know that this guidance is frequently ignored and there are also cases where doctors misinterpreted them, wanting to see more than one of the indicators before making a referral.  We also know of no instance where a doctor measured a lump on a first examination, so the ‘increasing in size’ indicator has been meaningless, even though it is the increasing size issue which most often gets patients to the doctor. So the new soft tissue sarcoma guidelines have a new emphasis.

“A patient presenting with a palpable lump should be referred urgently if any one of the following features applies:

A painless lump which the patient reports is increasing in size

Lump size greater than about 5 cm

Lump deep to fascia, fixed or immobile

Lump close to the site of a previously excised lump

Pain

If there is any doubt about the need for referral, discussion with a specialist or service, depending on local arrangements, should be undertaken.”

We can hope that the more precise wording and the requirement on doctors to take note of patient concern about increasing size will help to break the all too common deadlock between concerned patient and unconcerned doctor that has existed in the past.

To back all that up, the work led by NICE on Sarcoma Service Guidelines is progressing well and will shortly go out for its first public consultation. The aim has been to produce guidance which requires the local funders of cancer services to form alliances supporting multidisciplinary specialist treatment centres. Explicit in this is that these funding organisations then have the duty to ensure that all sarcoma patients in their area, however their disease is diagnosed, get to a sarcoma specialist treatment team as soon as possible. No-one can be sure how many such centres will emerge but in England it may not be more than twelve to fifteen.

It is also proposed that diagnostic centres, with access to expert clinical review, experienced radiographers, suitable scanners, and expert pathology should be more locally available. These centres should be formally linked with one or more of the specialist treatment centres so that all clinicians involved in sarcoma diagnosis or treatment create one network. The structure means that once sarcoma is diagnosed, treatment will be undertaken only by experienced doctors who see a minimum number of new patients every year. It is an ambitious plan and it isn’t yet certain it can be put in place.

The guideline development team has a very wide range of experience. It includes healthcare commissioners and administrators, two leading medical oncologists, two clinical oncologists, and three surgeons (all of them with more than 15 years sarcoma experience). There is a pathologist, a diagnostic radiologist, a palliative care expert, the senior nurse from a leading treatment centre, a physiotherapist and a family doctor. There are also three patients, one soft tissue, one bone and one GIST, two of them with experience of metastasis.

The hope that we can create an NHS which responds much better to the needs of sarcoma patients is what drives everyone involved. There is evidence from Scandinavia that this kind of approach has made things there much better. Our aim is that the NHS can catch them up and perhaps show other countries that it is possible to treat these rare cancers effectively, without the hit-and-miss processes of the past.

V2N1 ESUN Copyright © 2005 Liddy Shriver Sarcoma Initiative