Update – a view from the sunshine

The idea of getting away for the worst of the winter has always been very attractive. This year, for the very first time, we have been able to do it and we have gone to the Costa Blanca. The weather here is like an early summer’s day at home. Temperature out of the wind is in the mid-20s, though the wind has a chill to it and the official shade temperature comes down to 17 degrees. Its hard not to gloat, knowing the UK is in the grip of snow and ice with temperatures below zero for most of the day.

Going away however has other dangers. Everything seems to be happening. The Cancer Drugs Fund debacle, Harpal Kumar’s Task Force, at Sarcoma UK we are about to publish our study into gynae sarcoma, and NICE is about to publish (later this week) the Quality Standard for Sarcoma – the first of the rare cancers to have a Quality Standard. We also have the British Sarcoma Group Conference at the end of February. And then there is a General Election in May – although with the intensity of the campaigning which is already underway you’d think it was in early March.

So where do we stand on all these happenings?

Two weeks on from its controversial announcement CDF is revealed as a tawdry beast, built by politicians then deserted by them, taken on by a strong oncology commitment with patient interests at heart, unsupported by mandarins and then dumped by them when the heat built up. CDF will have spent over £1.2bn by the time it is meant to finish in 2016 and it has not gathered a single bit of efficacy data to support its spend. It has distorted the research community as new indications have been funded immediately off-label rather than real evidence being developed in an academic trial – a letter from Professor Matt Seymour of NIHR to Sean Brady, National Clinical Director for Cancer revealed that issue. Above all it is quite clear that the pharmaceutical industry has been benefitting, some companies being exploitative in their approach to it. The one thing it has achieved is to get people thinking evidence, research, new methods in research, and rational approaches to drug regulation.

Harpal Kumar’s Task Force is a welcome development. Not only is he the right person to be undertaking such a sweeping review it is going to be done quickly. The aim is clearly to have something approaching a new Natonal Cancer Plan by the time there is a new government. The new emphasis on early diagnosis will clearly be a key part of whatever comes out of the discussions.

Sarcoma UK”s report on gynae sarcomas deserves close attention. it is sub-titled ‘The Hidden Cancer’. We have long believed these patients are among the worst treated in the whole cancer community and this survey, of over 50 patients, shows just how poorly treated some of them are. There will be attempts to deride this study as too small to be representative. Consider however the sample size and the incidence of the disease. It is equivalent to an 8500 patient study in lung cancer – that would never be ignored, it would get front page treatment. Available on Sarcoma UK’s website from Tuesday.

The NICE Quality Standards programme is something of a treadmill for those involved in it. The process for a standard in sarcoma started in spring 2014, finished before Christmas and is being published at the end of January. The aim is a set of clear statements which define a quality service in the NHS and together with defined measures allow commissioners to assess quickly whether they are getting value for money. The NICE standing committee was supplemented by six people with an interest – two surgeons, an oncologist, a radiologist, a specialist nurse and a patient (me). There was lots of detailed debate, including some passionate episodes from a member or two. We agreed that diagnosis and the pathway to first treatment were the priority so when you read them (published on Friday 29th) do not be put off by the tight focus on the early stages of disease. More on this in due course.

The BSG Conference is from February 25th at the East Midlands Conference Centre in Nottingham. It is the annual educational event of the UK sarcoma community and provides the best all round view of developments from treatment, nursing care, through NHS structure, to regulation and of course sarcoma community affairs. If you are interested see the BSG wesbite at www.britishsarcomagroup.org.uk

As for the General Election – I leave that to others.

Reviewing the Evidence

A great part of our life is governed by evidence – we look and listen for evidence of danger when starting to cross the road. In particular areas such as health care, evidence tells us what has benefited patients and what has not.

Can we take an evidence-based approach when we consider religion? Many people would say that the evidence for God is in the Bible. But is the Bible really evidence? It is after all a lot of anecdotes quite often without any cross-references which might help confirm what is put forward as fact. For some this may be enough but the decline of church attendance suggests that for many it is not. The standards which one would apply to assessing the Bible as evidence would be completely inapplicable if we were looking at healthcare. In healthcare there need to be undeniable facts supported by measurable data. So is there a better way to go about looking for evidence which supports the exercise of faith?

Those with a strong faith may be horrified by taking a modern approach allied to science to this question. Is such an approach appropriate? I think it is. It is perhaps surprising to find that there are many scientists who have a faith. It isn’t rooted in their science. It is rooted more than anything in their understanding of life, and their awareness that there is something deep in humanity which cannot be readily explained.

It is not about language, family or society. It is not measurable. It is a different kind of evidence. Some would identify it as the core of our humanity. It is about the spiritual love of human kind which we all know about. Something taught by Jesus and all the great prophets of religion. It is something which takes you into the deeper connections of humanity.

This brings science and faith together in love. It is personally spiritual and intellectually mysterious. It is also quite exciting. Acceptance of this is a process which is both emotional and scientific. The evidence is personal, unique to each of us. Once understood like this it is with us everyday in everything we do; the eternal mystery of unconstrained love, striking the chords which are the music of faith.

First published in Stretton Focus, November 2014