Last week NICE published its revised Guidance for Suspected Cancer. Long awaited. Publication was held up because of the general election – why medical guidance should be politicised in this way only bureaucrats can tell you.

The sarcoma community had a sense of trepidation about this publication because the old guidance for GPs about sarcoma symptoms was being jettisoned. Its not that the old guidance could be regarded as particularly effective, nor indeed has there ever been a formal evaluation of it to provide evidence, its just that familiarity has a certain comfort. The British Sarcoma Group had reaffirmed the NICE guidelines when it published its own Guidance five years ago.

Now the GP is expected to have a suspicion of sarcoma based on the fact that the patient has a lump which is growing in size. It may be deep, it may be painful, or not. In certain circumstances that patient should be referred to a tertiary specialist centre immediately (on a 2-week wait) but if the GP has several possible alternative diagnoses he should refer for a ‘direct access’ ultra-sound scan (for soft tissue sarcoma) or x-ray (for bone sarcoma). ‘Direct access’ means that the GP receives the x-ray/scan reports and is responsible for follow-up action. The GP can prioritise that referral as ‘urgent’ (must be done within 2 weeks) or ‘very urgent’ (completed within 48 hours)if the patient is a child.

Because the new Guidance is symptom based and gives a GP access to diagnostic tests we can anticipate that the number of GP visits a patient makes (typically 5 or more) will reduce. We can also anticipate that the number of benign lumps sent to specialist centres will reduce. However we can also anticipate that ultra-sound may create new problems. Most ultra-sound services offered for GP direct access are from the private sector. They are often staffed by NHS radiographers but even so few ultra-sonographers will have experience of diagnosing sarcoma. How well their scans are reviewed by trained radiologists is irrelevant because few radiologists understand sarcoma either.

Thus we can anticipate the potential for two effects, one welcome and one unwelcome.

The welcome effect will be a reduction in the number of benign tumours being referred to sarcoma specialist centres.

The unwelcome one is the potential for a rise in late diagnosis and A&E diagnosis of sarcoma because “false negative” information has been given to a GP, who has also inappropriately re-assured the patient.

We shall keep a close eye on the NHS data on referral pathways in the coming years to see if the latter concern does appear.

Sarcoma UK’s initiatives on raising sarcoma awareness and using the idea of a golf ball as a suspicion indicator seem to be having an effect, although it is still too early to try and evaluate that through what is happening in specialist centres. The BMJ OnLine Learning Module developed by the team in Liverpool is freely available through Sarcoma UK’s support. There are pressures within the British Sarcoma Group to reduce the size of the suspicious lump to 40mm (currently 50mm) and the new approach by NICE opens the way for this.

What is happening through the charities and what NICE is offering fit well together, hopefully opening up the way for a general improvement in sarcoma diagnosis.

I do have one small complaint about the new NICE Guidance. In its glossary it defines sarcoma as:

A particular type of cancer, usually affecting muscles or bones.

I think that this is inaccurate, glib and pathetic. It has about as much value as saying “Dogs are a particular type of animal, usually with a leg at each corner”.  It is sloppy original writing, bad editing and deficient clinical oversight, regardless of the context in which it is published, in this case a glossary.

What does “particular type” mean? “Usually” is non-specific and has different implications for each reader’s understanding. About 50% of all sarcomas are visceral (GIST, gynae, retroperitoneal, abdominal). Most paediatric sarcomas affect muscle or bone but in adults bone sarcomas are uncommon. There are vastly greater numbers of adults than children diagnosed with sarcoma.

We need major organisations to take sarcoma seriously, so NICE (and others) please note that a more accurate and useful description is needed in the future.

Cancer Outcomes Conference 2015

National cancer conferences all take on a character of their own. If organised by one of the charities that charity’s agenda naturally takes centre stage, along with its chosen names. There are two conferences organised by national bodies – the NCRI Cancer Research Conference in November and the NCIN Cancer Outcomes Conference in June.

The NCRI Conference is, quite naturally, about research. Its agenda is developed over a year ahead so that international names can be booked while their diaries are clear. Themes are decided on and it takes a major shift in science (which doesn’t happen often) for things to change at short notice. It attracts about 1500 delegates, mostly scientists, a few cancer clinicians, a group of interested patients, and science managers from all over the place.

By contrast the NCIN Cancer Outcomes Conference is, nominally, about NHS data and how we use it. That’s a rapidly changing world and the agenda develops and shapes over the months, finally settling down a few weeks before the event. It attracts a wide variety of people including clinicians and researchers with an interest in how data is gathered and used, a group of interested patients, and of course lots of those who gather, manage and analyse data. About 500 people come.

It sounds rather dry and geeky. On the surface of it the Cancer Outcomes title doesn’t help a lot either, implying death on the one hand and survival on the others – a bit black and white. There is nothing monochrome here though.

NCIN is one of the great achievements from the reign of Professor Sir Mike Richards as National Cancer Director (there were many others too). Eight years ago the NHS gathered enormous amounts of data about cancer and did very little with it. One of the problems was that no single bit of it joined to any other bit and it took huge amounts of effort (and cost) to explore and match different datasets to get even quite simple analyses completed.

The Cancer Reform Strategy at the end of 2007 set out the plans to change this situation and the National Cancer Intelligence Network was formed, initially reporting to NCRI. There were many barrier to overcome. Cancer registry coding of tumour types had to be standardised across eight registries in England. Before cancer registry data could be mapped against Hospital Episode Statistics (known as HES) differences in understanding of common terms had to be sorted, additional codes in registration had to be developed to cover information which was needed o complement hospital activity, and one-off data practices in individual hospitals had to be resolved. Getting up to date data was also a problem, at the outset the most recent that could be reported was three to four years out of date when eventually available at all. It was also very quickly noticeable that radiotherapy and chemotherapy datasets just did not exist anywhere.

The NCIN 2015 Conference is probably the first event where we can say that the hard work by a lot of people to sort these problems has created an accessible network ready to answer questions from clinicians, charities and NHS managers. Data is now available in not-quite real-time, its certainly capable of giving very up to date views. It has also stimulated research using datasets not included because NCIN actively supports researchers wanting to push boundaries.

If we need to offer just one example of where NCIN analysis is changing things it is in the understanding of patients diagnosed with cancer following a visit to A&E. We always knew it happened. When it was analysed the shock was the scale of it and the poor survival of patients diagnosed by that route. Over 25% of patients are diagnosed through A&E and 50% do not survive one year. Steps to challenge this situation are underway. We are not yet certain but it increasingly looks as though poor awareness of cancer symptoms is the key reason why our survival statistics are generally so much poorer than many other similar countries.

NCIN 2015 was co-organised with the Northern Ireland Cancer Registry and Queens University Belfast. The programme was breathtakingly broad. Plenary sessions looked at issues in a more strategic way while parallel sessions looked at specific issues in greater detail. Parallel session topics included Prevention, Early Diagnosis, Clinical Practice, Treatment, Childhood and TYA Cancer, Inequalities, Survivorship, Epidemiology, Data Management and the Chemotherapy Dataset. Plenary sessions considered the International Perspective, General Practice and Cancer, Childhood Cancers and the crucial topic, Changing Clinical Practice – the importance of Routine Data and Cancer Registries.

There were some very distinguished speakers. Among them Professor Sir Richard Peto offering an up to date international view of smoking, Sara Hiom from Cancer Research UK, Professor Michel Coleman, Professor Paddy Johnston, and Professor Sir Alex Markham. There were important faces missing, the journey to Belfast proving too daunting for some who should have been there but shall remain nameless.

I had the privilege of co-chairing the Plenary session on General Practice together with Professor Greg Rubin from Durham. Cancer conferences in the past ten years or so have often griped about GPs and their inability to diagnose cancer, while at the same time understanding the reasons why they find it problematic. This session was the first time that General Practice has been given a voice in a major national Cancer Conference so it was long overdue. I felt very encouraged by the presentations which gave an objective view of the key issues and described some of the work going on to understand them better. Professor Willie Hamilton from Exeter, who has been clinical lead for the NICE review of its guidance to GPs about diagnosing cancer, gave some insights into that work which is being published Tuesday 23rd June.

Thanks and congratulations go to the organising groups for the Cancer Outcomes Conference 2015 – NCIN led by its Director, Chris Carrington and QUB led by Dr Anna Gavin.


Its been a strange few weeks. Getting back mobile has been my main priority after nearly three months of immobility and then slowly increasing capability. I had been looking for ward to getting into the swim again and was able to attend the Cancer Outcomes Conference organised in Belfast by NCIN, more of that in a later blog.

On Saturday I was at the Sarcoma UK Talking Research event in Manchester. What a great day ! Sarah Macdonald (SUK’s Head of Research) had done a tremendous job in selecting and briefing top scientists and clinicians and the audience of patients and carers (about 200) (plus a few non-speaking doctors and nurses) engaged and learned. Everyone spoke at a sensible level of understanding, scientific terms were explained, and concepts which are difficult to get hold of used explanatory slides. As a scientific meeting with a patient focus it was exemplary. I’ve been to a few in my time but none to beat this.

Dr Gareth Veal from Newcastle gave the best explanation of cancer pharmacology and its role in helping get the best dose of drug suitable for an individual patient. A translational study is running alongside the EuroEwing 2012 clinical trial so the Newcastle unit is turning its research understanding into clinical value and, hopefully, increased benefit for each patient in the study.

Dr Robin Young is a medical oncologist in Sheffield with an academic research role as well. I first met him some years ago when he was working on his PhD and was impressed by his commitment to a dual clinical/science role. He was working on angiosarcoma then and his work has taken an unusual direction looking at the commonalities between angiosarcoma in humans and dogs. This stemmed from discussions at the British Sarcoma Group four years ago with a leading veterinary oncologist. Angiosarcoma is common in larger dogs. The tumour similarities are apparently strong and the study is looking at how development of new treatments might be trialled in dogs and those results could benefit human patients too.

I had the privilege of giving a short lecture in memory of Paul Robson, who died in a heart operation in January. Paul was a long-standing sarcoma survivor, an active advocate locally in the East Midlands and latterly working with Sarcoma UK nationally too, on behalf of sarcoma patients. My personal reflections about involvement in research as a patient go back more than 12 years, starting when times were different. I kept it short. I was joined by Mike Francis and Chris Copland who are both deeply involved with EuroEwing. Chris is also attending and speaking at international paediatric cancer conferences making the patient/carer voice heard. Sarah Welby, the sarcoma research nurse from the Christie Hospital, described her role and how they worked to ensure that patients in clinical studies received the best care.

After lunch Professor Ted Hupp from Edinburgh talked about the p53 gene and his research into how this gene, which seems ubiquitous in cancer, probably has a key role to play in the treatment of sarcomas. A study with an experimental drug targeting p53 showed benefit for a cohort of liposarcoma patients. Sadly the company owning the agent decided against developing it further – a story we have heard rather too often with sarcoma drugs. It is clear that the pharmaceutical industry business model is far too focussed on common cancers.

Dr Paul Huang from the ICR in London looked at drug resistance to tyrosine kinase inhibitors, with a focus on pazopanib (Votrient). He started with a diagram of a cancer cell, and then said it was a simplified version, to everyone’s gasp of horror. He described how pathways could be defined and using a London Underground metaphor explained how cancer was clever, and found new routes to its objective when its first route was blocked. Understanding this in sarcoma patients will help identify those more suited to targeted therapy and also point to other therapies if applicable. This research is opening up new understanding of how cells work and could have ramifications much more widely for development of tyrosine kinase inhibition.

The last speaker was Dr Nick Gough, a palliative care specialist who undertook one of the first studies funded by Sarcoma UK. It is an extensive view of quality of life in advanced sarcoma with both qualitative and quantitative elements to it. It generated a lot of interesting data and Nick provided an updated view (there have been posters and previous presentations at various conferences). The final paper has been prepared and will hopefully be in print later in the year or early 2016.

The morning session was chaired by Dr Mike Leahy, medical oncologist at the Christie, and the afternoon session by Professor Lee Jeys, orthopaedic surgeon from Birmingham and Chair of the NCRI Clinical Studies Group for Sarcoma. Both have a relaxed and easy approach which patients readily appreciate and which the speakers could echo. There was real appreciation of the accessibility of the talks.

To close the day Richard Whitehead MBE, Sarcoma UK’s patron, Paralympics gold medal winner and the world’s leading marathon runner on prosthetics, talked about his 40-day 40-marathons run from John O’Groats to Lands End. A truly inspiring man, a great story and a real high with which to finish a great day.


More and more the Christian underpinning of our society seems under attack. Britain was renowned for its liberal Christian faith. People mattered. Social welfare, the NHS, state education, a paternal approach to those in need globally, all have been a matter of pride for a country which valued people. Now we have greedy bankers, politicians we don’t trust or believe, and a society where every change or development is measured in £s.

The Christian ethic seems to be fast withering away. People like us are merely there to make up the numbers. There seems to be no alternative. Leaders in public life all look and sound alike. Where is faith?

At another time and in another place in a famous incident a young preacher disrupted a money market. He sent the tables flying and released the animals and birds captured for sacrifice. Somewhere else he told a story about a widow and her valued farthing, highlighting a bleak outlook for unscrupulous moneychangers and rapacious tax gatherers. At other times he talked about ordinary people and how their generosity of spirit was a different kind of wealth, even if they were Samaritans.

In his day there was a confusion of religious and secular authorities all of which had to be respected. Above all there was the law, religious rules which governed daily life and which were to be seen as sacrosanct. The keepers of those laws allowed the moneychangers’ tables and were immune from criticism. Woe betide he who challenged them.

We tell ourselves we have to learn from these stories but how often do we surround the real message with dogma and tradition? Our approach should be inclusive, open and questioning, looking for what we can learn, putting no barriers around it and looking at how we can use it in our daily life.

It is our remit to take Christian faith to challenge the philosophies of modern life in practical and pragmatic ways. Little things count, sometimes more than big ones. We may not be able to copy Jesus by turning over the tables of the moneychangers but we can learn from his example and take small incremental steps, driven by our faith.

First published as URC Voice in Stretton Focus, June 2015