Britain Against Cancer

 

The Great Clock (Photo credit: Martin Deutsch)

The  ALL PARTY

 

PARLIAMENTARY

 

GROUP’S  ANNUAL

 

CONFERENCE

 

This was the 14th annual gathering, and it’s beginning to show its age.  Chairman, John Baron, MP,  gave a rousing introduction which promised much – but by the time we gathered for the first break-out session, entitled What Patients want from the NHS,  it became obvious that lessons from previous conferences haven’t been learnt.

Looking round the room, there were the usual faces present.  Sitting at democratically-placed tables-in-the-round;  each was to be ‘hosted’ by one of the ‘usual’ volunteers, leaving one to wonder why were we banging the same drum which obviously wasn’t being listened to.

Instead, it would have surely been more productive to get hosts who were tasked with actually providing what patients want;   listening to what we said we wanted, Why not  bring in some of the high and mighty who pontificate about cancer care in today’s NHS, but obviously aren’t listening to patients?  When faced with a dozen patients – they would HAVE to listen.

Each Delegate psck contained a dinky postcard, offering “London Cancer’s overall  mission is to drive superior outcomes…….” etc. etc.  Why not say it is to improve care, in plain simple language?  That’s what we all want, and things are improving – but too slowly for some. 

Wot, nothing from Europe?

Macmillan were involved in running this event, and their letest survey says London’s cancer care is lagging way behind the rest of the UK.  Being so close to the Continent, it would have been an ideal  opportunity to invite European experts, and listen to some straight-talking from their Oncologists as to why we are lagging behind. 

But it seems UK PLC is too arrogant to ask advice from other countries, even if their care enables their citizens to live far longer after a cancer diagnosis.

Europa Donna (the European-wide consortium of Breast Cancer societies) were present;  perhaps next year Macmillan might ask them to provide speakers?

Clinical Nurse Specialists (CNS)

CNSs were talked about as a ‘good thing’ that everyone should have access to.  A straw poll produced the information that patients considered access to a helpful CNS was most important – where he or she was based was less important – it was access, even at the end of a phone or email, that patients wanted.But one wonders why the Chief Nurse, or whoever, wasn’t called to the Platform to answer why they aren’t available to every patient?  Many patients were treat five or even ten years ago, but have never been given access to a CNS, even though post-cancer they will have many questions.  Lots of Jaw Jaw, but no action – and so it went on. 

There was a feeling that patients still weren’t being given enough care and support once they had left hospital, and access to a CNS (when needed) would be helpful for all.

Plenty of MPs were present;  one of them, Andy Burnham (ex-Health Minister) was a speaker;  he  gave a very good speech, but so he should.  He doesn’t have the cares of office any longer, so it is easy to comment, knowing you can’t be held accountable.  But as usual the audience was not given enough time to ask questions as he had ‘another engagement’.  One wonders what was more important than talking about health.

Next Year

This could be the ideal opportunity to make the conference really meaningful.  Macmillan should forget its politicing – and get some dialogue going.  What about

• a head-to-head with Andy Burnham questioning Mike Richards? 
•  Mitzi Blennerhasset questioning Julietta Patnick on screening
• and am sure readers can think of other interesting combinations!

Get the ‘great and good’ out of their Consulting rooms, and into the sessions to actually meet with nurses and patients to answer their questions.

But will anyone be brave enough to organise such a gathering?

 

Britain Against Cancer Conference disappoints

Expectations were high ~

but didn’t deliver

 

Last year the audience was full of enthusiasm at the APPGC Britain Against Cancer Conference.                                      Delegates participated, learnt, exchanged views and sessions provided plenty  of  food for thought.

But  this year the formula has changed.  Instead of lively debates, we were asked to ‘submit questions in advance’ and had to endure the one-hour-get-it-all-in-module.

This is so 1980s, and it’s about time Macmillan (who now run this group), realised that people who come to their conferences don’t need trendy management tricks.  These are stuck in a time-warp, but unfortunately still used by some companies to run training courses for charities etc.    The formula worked 30 years ago, but we have moved on from there, and people no longer need encouragement to participate – it’s keeping their questions short that is the problem.  Una used to run this conference, and she realised that when you gather together MPs, Charity Executives and informed patients, you are going to get a useful dialogue going by just letting them get on with exchanging ideas.

Patient Voice in local, regional and national NHS decisions.

Baroness Masham was an excellent chair for this session, and her speaker was Angela Coulter from Dept. Health at University of Oxford.  But they were both up against time restrictions, and when the audience tried to ask questions the Baroness regretfully had to say there wasn’t time.

Ms Coulter produced an up-beat analysis of what the Health Bill might do, showing a positive side to the pages of blurb, which made some sense. She said she thought nothing much would change in the NHS, (was this because she knows the NHS doesn’t like change?),  and “Patients are the greatest resource we have”.

Talking over the clauses in the Bill, she said there should not be an exclusive focus on a single disease;  what patients want is well-co-ordinated holistic care.  Politicians haven’t done much explaining about what’s going to happen with this Bill, and Lansley hasn’t made this clear to NHS staff – yet.

Then, when we would all have like to question Ms Coulter, who seemed brimming with sensible advice, we were split up into the dreaded round tables to come up with ‘ideas’ .

We were given case studies to read (impossible – there was no time), and Breakthrough Breast Cancer,  who had been asked to organise the session, admitted they had been told to keep everything short – but then told they had to include speakers, workshop session, case study and wrap-up – all to be completed in 60 minutes.  This was a complete waste of Breakthrough’s time and expertise, and did no favours to the knowledgeable audience, all of whom could have been better employed questioning the Baroness and Ms Coulter, and gathering some of their expert opinions.

After all, the Baroness was off that afternoon to put forward an ammendment to the Health Bill in the House of Lords  – which we would have all liked to hear more about from someone at the sharp end.

There were murmurs around tables about ‘not enough time’.  One can only imagine that the huge Macmillan HQs cupboards are bursting with all the sheets of A1 paper they love to distribute for table ‘hosts’ to fill in. But come up with anything concrete – no.  Let’s hope that Macmillan will throw out the old formulas and bring in up-to-date debates, similar to previous conferences.

Panel Discussion

The afternoon started with a panel discussion from Prof. Sir Mike Richards, Prof. Steve Field and Dr. Frank Atherton, President of the Assn. of Directors of Public Health.

Mike Richards repeated the usual mantra about how we lag behind Europe in cancer survival.  Well, it’s about time the Dept. Health, National Cancer Action Team and Uncle Tom Cobley got on with doing something – not just talking.

Eurostar runs a slick service to the Continent;  there are plenty of low cost airlines zipping across the 21 miles of Channel, yet no-one seems to be running any exchange programmes – let alone asking patients if they would like to go for treatment to see and compare what is different and what could easily be copied.

Because treatment in Europe is not all about expensive drugs or equipment (although these are available), but much more about the approach to treating patients holistically.

But during the panel’s speaches, instead of being told of ‘goodies’ that were coming on-stream, we were treated to old but shocking statistics, such as  a quarter of cancer patients present as Emergencies;  plus the fact that GI Endoscopies were at the bottom of the table when it came to investigations.  We know this – let’s know what’s going to improve from a patients’ point of view.

The conference was supposed to be about Achieving Quality, and Getting cancer services right in the new NHS.  The only practical advice seemed to be Dr. Atherton’s four points:

1. Health and Wealth Boards – get them to focus on cancer
2. Better information about benchmarking
3. Need to look at pathways in much greater degree
4. and importance of Networking

The comments from the platform could have spiked a lively discussion.  Instead the audience had been asked to submit their questions in advance, and organisers had chosen selected ones.  Afterwards a patient went up to Mike Richards to say she felt frustrated.  She heard a lot about ‘patient involvement’, but whenever she tried to get involved, she seemed to be sent off in another direction, or not given any details as to how she could get involved.

Exhibition

The exhibition was well thought out, with interesting tables and staff eager to talk and inform.  I met Krish Shastri, the insurance guru, and we had a long discussion on how neither medical insurance companies nor oncologists let patients know that their insurance for cancer-related illness may well run out after five years.  Leaving patients floating around, either paying for themselves, or having to find ‘new’ doctors as their doctors were seeing them privately.

There was a real buzz in the room, and it showed that when you get a large group of intelligent people interested in cancer, there is a lot to be learnt from listening to them, and debating.

Let’s hope the conference goes back to that formula next year.

Deja Vue

Chillingly, reading my report on this conference last year I had mentioned that Andrew Lansley had placed great emphasis on ‘using the voluntary sector’ to a much greater extent.  Well, it was evident that Macmillan has got into bed very firmly with the Dept. Health/NHS – but is this what the volunteers who support this great charity really want?

 

 

 

 

Breast Screening – is it for you or me?

Image via Wikipedia

At last –

Screening is to be reviewed

Ever since I attended a fascinating meeting put on by Europa Donna, where an expert from Scandinavia debated with the Professor who introduced the breast screening programme into Britain –

and nearly came to blows –

the subject has been of enormous interest.

.

First – I must declare an interest.

• I have decided for the time being to have an annual mammogram
• I am then seen by my very eminent breast surgeon, and he carefully examines the screen to see my ‘photos’.              This gives me confidence that my mammogram results are being checked by an expert.

But – when Professor Michael Baum, the very eminent surgeon who introduced the breast screening programme to Britain, then opted out and questioned its efficacy – one listens.

According to a recent BBC story,the evidence for breast cancer screening in the UK is being reviewed, amid controversy about the measure’s effectiveness.

The NHS says screening saves lives, but other researchers have argued that it may cause more harm than good.

The national cancer director for England, Prof Mike Richards, announced in the British Medical Journal that he will lead a review.

He said he was taking the “current controversy very seriously”.

When it comes to cancer treatment, earlier is better. Screening programmes for a range of cancers help doctors make a diagnosis sooner. But they also run the risk of false positives, diagnosing someone with cancer when they are healthy.

Life saving

Screening was introduced for breast cancer in 1988 in the UK, and now offers tests to women, over the age of 50, every three years.

In 2002, the World Health Organisation’s International Agency for Research on Cancer estimated that screening reduced deaths from breast cancer by about 35%.

The NHS says 1,400 lives are saved through screening in England alone.

Sara Hiom, from Cancer Research UK says, “the decision whether to be screened is a personal one, but that decision should be made with all of the potential harms and benefits fully explained”

And currently it is extremely difficult, if not impossible, to get that explanation.

Review

A review of clinical trials involving a total of 600,000 women concluded it was “not clear whether screening does more good than harm”.

It said that for every 2,000 women screened in a 10-year period:

• one life would be saved
• 10 healthy women would have unnecessary treatment
• at least 200 women would face psychological distress for many months because of false positive results.

The authors of that research labelled the NHS Breast Screening Programme’s advice “seriously misleading”.

Should I?  Or shouldn’t I?

Susan Bewley, Professor of complex obstetrics at King’s College London, has turned down screening.

In a letter to Prof Richards last month, she said: “The distress of overdiagnosis and decision making when finding lesions that might, or might not, be cancer that might, or might not, require mutilating surgery is increasingly being exposed.”

In response, Prof Richards said research suggested that up to two and a half lives were saved for every over-diagnosed case.

He added that he would lead a review of the evidence to settle the ongoing controversy.

“Should the independent review conclude that the balance of harms outweighs the benefits of breast screening, I will have no hesitation in referring the findings to the UK National Screening Committee and then ministers.

The review will be led jointly by Prof Richards and Cancer Research UK.

The director of health information at the charity, Sara Hiom, said: “Women need more accurate, evidence-based and clear information to be able to make an informed choice about breast screening.

“The decision whether to be screened is a personal one, but that decision should be made with all of the potential harms and benefits fully explained.”

Breakthrough Breast Cancer’s chief executive Chris Askew said: “Breast screening is vital as it can detect breast cancer at the earliest possible stages when no other symptoms are obvious.

“The earlier breast cancer is picked up the better for the one in eight women who are diagnosed every year with this disease, as treatment options are more likely to be less aggressive and have successful outcomes.

The value of breast cancer screening has been a source of controversy

So for the moment, I am definitely watching what goes on.  Personally as co-chair of the local LINk cancer group I will be following the official line – BUT to any woman who asks, I will be advising them to weigh up all the evidence, and ensure that the centre where they are screened is entirely transparent and answers questions FULLY.

It is no use the NHS trying to act like a Nanny state – that’s what happened in Communist countries.  We need the eminent medics to stop squabbling and get round the table to discuss fully the pros and cons.

More:  http://www.bbc.co.uk/news/health-15444879

Is this why our cancer statistics are so bad?

Image via Wikipedia

Thousands of cancer patients are not being given most successful treatments

BBC reports radiotherapists claim too few people are getting radiotherapy because GPs and the public see drugs and surgery as better options.

They warn this could explain why the UK has lower cancer survival rates

Estimates say 52% of all cancer patients in the UK should receive radiotherapy, but actual figures are:

• England and Wales 38% of patients get radiotherapy
• Northern Ireland  35%
• Scotland 43%

Experts say that suggests approximately 30,000 cancer patients are not getting what they would consider the best treatment.

What is radiotherapy?

It is a treatment for cancer using radiation, usually X-rays, to damage the DNA in cells. Healthy cells can repair the damage. Rapidly dividing cancerous cells cannot, so they die.

Dr Jane Barnett, president of the Royal College of Radiologists, says “radiotherapy is still a magic bullet.”  Especially now with the use of computer imagery.

Why is it under-used?

Money.  Professionals admit anti-cancer drugs, backed by the pharmaceutical industry, were better promoted than radiotherapy.

Dr Barnett said GPs were also poorly informed about the subject: “Radiotherapy plays a very small part in a doctor’s training, unless you’re going to be a clinical oncologist, compared with drugs and surgery which play a part in many fields.”

The National Radiotherapy Awareness Initiative is trying to improve radiotherapy’s reputation, saying radiotherapy cures more people than chemotherapy, is 13 times more cost effective and is targeted to within millimetres.

Professor Tim Maughan, oncologist at the Velindre Hospital in Cardiff, criticised the government’s decision to set up a cancer drugs fund worth £200m a year.

He said: “It’s the wrong decision. I don’t understand how we can chose to spend money on drugs which have not been deemed cost effect by NICE (the National Institute of Health and Clinical Excellence).

Professor Mike Richards, national clinical director for cancer, says “The recently published national cancer strategy clearly recognises the role of radiotherapy and commits additional funding.”  So why so coy?

What’s to come?

New technologies, such as Intensity Modulated Radiotherapy (IMRT), are more effective at targeting the radiation at the tumour, minimising damage to nearby tissues and reducing side effects.

But UK lags behind Europe:

approx. 20% of European patients have access to IMRT

approx 7% have access in UK

One reason could be NHS’s lack of proper administration.

A radiotherapy unit uses very expensive – but cost-effective – machinery.

• In private sector these units run for a minimum 12 hours per day.
• Most NHS units are still governed by old-fashioned administration, and run 8 hours a day.

One of the newest forms of treatment, proton beam therapy, fires particles at a tumour rather than using radiation waves.

If you think this might benefit you, DEMAND to be sent to Europe for treatment;  patients are being funded by NHS to go abroad – but NHS is keeping quiet.  Natch.

Make sure if radiotherapy could help, that you demand to be given a course.

And call La La Lansley’s bluff – he keeps on spouting mantra that we lag behind Europe, so use his words to get best treatment for yourself – abroad if need be.

Good news, bad news on Breast Cancer survival rates

Breast cancer rates fall in the UK, but survival rate still amongst lowest in Europe

There was good news this week;  research published in the British Medical Journal (BMJ) showed that deaths due to breast cancer have fallen by a third in Britain since the 1980s, to 28.2 per 100,000 women, marking the biggest improvement in Europe.

And those at Cancer Research UK, Breast Cancer Care, Breakthrough Breast Cancer, etc. deserve a pat on the  back for the tireless work they have done to push these improvements through, and the doctors and nurses who have worked with and listened to them.

Improvements were put down to earlier detection and improved treatment methods.  The UK’s breast cancer screening programme was said to be partly responsible for the gain. However, after my article posted last week when Andrew Dilnot, Principal of St. Hugh’s College Oxford, said at the London Computational Knowledge Conference that we shouldn’t trust statistics – I started to think  (takes a lot of effort for me!).

Looking ‘behind’ the statistics, as Dilnot recommended, I find the steepness of the fall in death rates is possible, because the UK started off with such a poor record in comparison to Europe. In 1987-9 (starting point for the study), the UK had the highest death rates from breast cancer in Europe.  Even now, only Ireland, the Netherland and Denmark rank worse in the table published in the BMJ.

Mike Richards and other Dept. Health officials  don’t like it when we point out that other countries had better rates to start with, and why haven’t we yet managed to equal these?  They seem to think that Europe will stand still, and in their blinkered way they imagine we are only country that is advancing. And it isn’t just money that makes a difference – Lord Darzi frequently said  France spent the same amount overall per person on healthcare (care is funded differently, but he worked out French and Britons paid out same overall).

But as the Patients’ Association says, with cancer care in the news because of cuts in funding, it is also clear that the pressure must be kept on to maintain this improvement.

These figures show that things are improving.  People who would have died ten years ago are now alive, which is wonderful news. 

But if we want to improve, we must all push, agitate and question why aren’t we equal to Europe?

Response from Michael Baum

Professor Michael Baum has just emailed me:

” I’ve just carefully read the paper in the BMJ on trends in breast cancer mortality in European countries, since 1980.    ( Disparities in breast cancer mortality trends between 30 European countries: retrospective trend analysis of WHO mortality data base, Autier P, Boniol M, La Vecchia C et al, BMJ 2010, 341, 335).

There is also an accompanying editorial by Beral and Peto, explaining why mortality trends are more robust than survival estimates that are polluted by the over-diagnosis at screening on the one hand and the under-registration of new cases that are only picked up at the time of metastatic spread on the other hand.So slagging off the UK for having the worst survival in Europe might just reflect the over-diagnosis in screening intense countries like Sweden.

Interestingly enough, whilst England and Wales has the steepest fall in breast cancer mortality since a peak at 1988, Sweden has demonstrated very little fall in mortality. Furthermore the steepest fall in mortality was in the age group <50 in countries with none or low intensity screening in this age group.

These data reinforce my view that the fall in mortality in the UK is in spite of rather than because of screening. Yet the BBC lead on this feature interviewing a woman who claims her life was saved 4 years ago because her cancer was caught early at screening!!!”

Prof. Baum has a huge bio – just Google if you haven’t met him.  He was Principal Investigator in the ATAC trials,  and is probably proudest of being awarded the bi-annual St. Gallen Lifetime Achievement Award for Advancements in Breast Cancer Research- which comes with a fantastic watch which he wears.  He is also author of ‘Breast Beating’ – more info under Books category.

What we can do to improve survival

One effective way of getting cancer patients’ message over is to sign up for Breakthrough’s Westminster Fly In.  I work on committees for several cancer charities, and this was the most effective campaignwith which I was involved last year. Mark Simmonds produced powerful speeches at the event, highighting again and again how our cancer treatment lags behind Europe’s – and this year David Cameron and Andrew Lansley have repeated the message.  So congratulations to all those who got the message through to politicians – at last.

The next Fly-In takes place October 18th/19th.  If you want to get your teeth into a really effective campaign, contact them on www.breakthrough.org.uk, and if they accept you as a delegate (they pay all accommodation and expenses).  But be prepared to work very hard.

And make use of Volunteers

At a Europa Donna conference in Milan, I realised that other European countries are far more sensible than we are.  Same goes for the USA, where cancer patients have been incredibly effective in getting the message about breast cancer over to the American public.  They don’t employ consultants to undertake training for advocacy – they use cancer patients who train fellow patients, nurses, doctors, etc.   Having just finished a year of ‘volunteering’ and training courses, I have discovered that even though the NHS is getting rid of consultants, they have found a comfortable niche with some charities, and have the cheek to attempt to train us.

Surely British charities should look around at their volunteers, and pay them, instead of employing consultants?  Volunteers are the people who know what is needed, and many are very effective campaigners:  they are involved – they know what cancer is, and what is wanted.  Most of us have learnt to be articulate whilst fighting for treatment, and are much more effective than a consultant whose basic knowledge is based on theory, not practice.

I give warning that the next day course I attend run by a charity who has employed an outside Consultancy team, hired at vast expense, who use ‘training by rote’ and copy trendy ideas for ‘getting your audience involved’ is going to be in the epicentre of an erruption – caused by me.  I am not putting up with another a training day that started by asking a roomful of dedicated, knowledgeable campaigners who meet frequently on committees, to  “stand up and tell us what you would put in your suitcase”.  This nonsense  is liable to have a controlled explosion on its hands.  Me!

This is one of a raft of tricks used by consultant trainers to get everyone talking!!  Any cancer patient would know we don’t need excuses to talk!  If we have given up a day to help, we want to get on – not waste time.

Westminster Fly-In

But I shall be at the Westminster Fly-In – because the time we spend on this campaign is effective, and a good stepping stone to getting better care and improvement in cancer services.  Fellow campaigners have got their MPs involved and working for the cause – because MPs don’t need trendy-speak – they want solid facts.

Two years ago I was involved with another charity at the start of the National Cancer Survivorship Initiative (NCSI).  24 months later, it is still in the jaw-jaw doldrums.  As it is funded by the NHS there isn’t any urgency, except amongst survivors who are fed up with poor care, and if they can afford it go off to European medical spas.  The NCSI doesn’t have to report until 2012!  but I can’t wait that long to find out what I should be doing to survive after-effects of cancer drugs.

For report on last year’s Westminster Fly-in, and to get involved, see :  http://after-cancer.com/cancer-news-latest/how-to-lobby-an-mp/

Survivorship – will help improve out statistics

It is no good a doctor telling us at a Macmillan conference, “ten years after diagnosis 60% of patients are still suffering from side effects of cancer drugs”, if we don’t get help now.

Helping us stay on hormonal drugs (as they do in Europe) will raise survival rates, and improve our quality of life – rather than knowing we come off the hormonal drugs course because of side effects,  but doing nothing to help us stay on.

I want to leave off being a statistic, and get my after-side-effects under control.  If anyone feels they can’t wait either, do post a comment below.

For more information on recent Cancer Stats see article from BMJ:  http://www.bbc.co.uk/news/health-10944826

However, remember what Dilnot says and take the statistical table shown in this article with a pinch of salt.  I have been in Romanian hospitals, and have great admiration for their doctors and their training.  However, the country is poor, and I would question that their survival rate would be what is reported – UNLESS – as they can’t afford expensive drugs, would we be better off ditching drugs for our treatment?  Makes you wonder.