Improving the Patient Experience: |
the UK Takes Specialist Centres Seriously
An ESUN Article
In 1995 the National Health Service in England embarked on a journey. A report had been written for the Government by Professor Sir Kenneth Calman, a distinguished oncologist, looking at the standards of treatment and care for cancer patients. It was a pretty damning report. The NHS was not delivering the quality of treatment that patients should have received and the UK’s survival rate for almost every cancer was among the lowest in Europe and the western world.
The journey started with a series of studies to develop guidance for the treatment of each major group of cancers. Known as "Improving Outcomes Guidance," teams of clinical experts, supported by researchers, patient representatives and NHS management, started on the challenge of getting appropriate structures in place in the NHS to treat cancer. This was not about clinical treatment, it was about ensuring that there was a clear pathway through diagnosis and treatment which patients would follow, the right clinical skills were there to deliver it, and that the supporting systems were in place. The work was led by Professor Bob Haward, a cancer epidemiologist based at Leeds University, and over the following four years his team put guidance in place for the cancers with the largest incidence.
The work was given a new emphasis in 1999 when the new Government decided to create the National Institute of Clinical Excellence – NICE. The new body took over the development of the guidance and had most of the less common cancers to address, plus the opportunity to look at areas such as palliative care and the particular needs of younger patients.
An academic unit to support the work was created in Cardiff under the direction of Dr Fergus Macbeth, a clinical oncologist and research investigator. In 2004 the turn arrived for sarcoma to come under scrutiny. A development group was formed which met monthly over the following 18 months. The chair of the group was Dr Joe Kearney, a public health consultant who had a special interest in rare cancers, and the clinical lead was Mr Rob Grimer, one of our leading orthopaedic oncology surgeons. Defining the key questions which had to be answered about how to structure a service which could improve outcomes for patients with sarcoma were the first task.
We needed to know how many diagnoses there were each year; what evidence was there to support creating centres of specialist excellence; what would such centres look like; how many patients should a clinician be treating to be regarded as a specialist; what support services were essential, or just good to have. The list ran on and on. The support team from Cardiff researched the literature, and gained access to unpublished papers from around the world in search of the answers.
Although the total number of patients remains uncertain even today we have good reason to believe that across the UK there are about 3,000 diagnoses, covering all sarcomas, each year. Of these about 450 are primary bone cancers, 750 are GIST and the remainder the other soft tissue sarcomas. About 220 cases altogether are paediatric and a similar number teenage and young adult.
The diagnostic part of the pathway was a major concern for all of us on the development group – whether patient or doctor. There were just too many instances of delayed diagnosis and misdiagnosis. All three patients on the group had faced that situation, though all three had found their way to specialist centres for treatment.
As all the results came in to answer all the questions the shape of a service began to emerge. We wanted to see a small number of treatment centres of excellence, each with a multi-disciplinary team of surgeons, oncologists, radiologists, pathologists, nurses and other healthcare professionals, treating no fewer than 100 patients each year. Each centre would have a diagnostic service, whether that was based centrally in their area or was a disseminated service using skills in outlying hospitals. The numbers of patients in England would justify no more than 10-12 of these treatment centres, given that a number of hospitals already treated a greater number than 100. What we had found out though was that over 60 hospitals treated less than 10 patients each year, and in many of them it was only one or two. In our view it was time for them to give up treating sarcoma.
After a period of consultation, and an assessment of the economic impact of the proposals, the Sarcoma Guidance was published in 2006. The aim was that the NHS would have three years to put the Guidance into effect and we have been carefully monitoring the implementation in England and Wales. Scotland is not subject to the Guidance but has clearly been watching matters closely and has taken its own steps forward.
As you might expect there have been a few confounding factors. The first was already in place – bone sarcoma treatment is funded nationally through a network of five orthopaedic oncology units in Birmingham, Stanmore (north London), Oxford, Oswestry and Newcastle. Each of these should logically become a soft tissue surgical centre as well. Only Oxford and Newcastle have oncologists in the same hospital so for the other three links to specialist oncologists have been necessary.
The second confounding factor was that the guidance suggested that a close look should be taken at developing a similar network for the treatment of retroperitoneal sarcomas. There were too many surgeons undertaking these difficult cases and reducing the number was certainly going to happen. However a study by the Department of Health felt that reducing the number of centres to 4 or 5 would not be in general patient interests.
So where are we now? The date for full implementation has been put back to 2010 but the shape of the final network is becoming clear. There are three areas in England where some details have still to be worked out but Scotland has taken shape and Wales is moving forward.
The UK’s largest centre for soft tissue sarcoma is the Royal Marsden Hospital in London. The sarcoma team there has a world-class reputation and through its lead clinician, Professor Ian Judson, is also a major centre for clinical trials in sarcoma. The Royal National Orthopaedic Hospital in Stanmore is teamed up with University College London Hospital, providing the London Sarcoma Service. In London and the south-east of England it is the centre for bone sarcomas. Between them these two multi-disciplinary teams cover London and the whole south-east of England down the south coast to Southampton. They also both collaborate with the Royal Brompton Hospital, a world-class cardio-thoracic centre, for the surgical treatment of lung metastases.
In England outside London the known centres of excellence are in Birmingham, Oxford, Cambridge, Sheffield, Leeds, Newcastle and a joint centre between Nottingham and Leicester.
In the north-west, including Manchester, there are still decisions to be made. The Oswestry surgical sarcoma team is one of the bone cancer units and has strong links with the Christie Hospital in Manchester for reconstructive surgery and oncology support. But there are also surgical teams in Liverpool and at the Manchester Royal Infirmary so if the patient target of 100 new cases is to be met at least one of these surgical units must be closed.
In the south-west matters are less clear cut. Bristol, Exeter and Plymouth all have expertise but none of them reaches the 100 target. The local cancer networks are currently consulting to see how they can resolve the issues. It is expected that a two-centre approach (like the Leicester/Nottingham team) is the probable outcome.
There are some issues still to be resolved about which is the most appropriate centre for patients from more remote corners of the country to be treated.
In south Wales most surgery is undertaken in Cardiff although bone sarcomas and some difficult cases go to Brimingham. There is oncology support in Swansea and Cardiff. The North Wales’ cancer centre at Glan Clwyd works with Oswestry for surgery.
In Scotland the five centres all work as one multi-disciplinary team. Glasgow, Edinburgh, Dundee, Aberdeen and Inverness all have oncology and undertake diagnostic work. There are surgeons in all centres but Glasgow and Edinburgh have bone sarcoma expertise. Because the five centres work as one, unusual diagnostic problems are shared and decisions about the most appropriate approach can be taken calling on all the available expertise. It is an interesting model which instinctively one believes will lead to better patient outcomes.
There has been some pain in the process of getting to this point. Some very good sarcoma doctors are ceasing to treat sarcomas, other than as an outpost of one of the acknowledged centres of excellence. For patients this means that where chemotherapy can be delivered and supervised locally it will be, and travelling for follow-up appointments can be miminised. These specialists also have an important role to play in the diagnostic process, where their familiarity with sarcoma can help speed new patients through to the right surgeon.
The dust has not settled yet – it is still work in progress – but the shape of the service which delivers sarcoma treatment in the UK is rapidly changing. We hope that every patient will see a sarcoma expert more quickly than hitherto, will have their case considered by a multi-disciplinary team, and that as a result all our patients will be better treated and survival rates will improve.
V5N6 ESUN Copyright © 2008 Liddy Shriver Sarcoma Initiative.