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It’s Cancer Conference season – Be There!-Cancer Survivorship

Thames Valley Cancer Alliance Annual Conference

This was one of the first of the nation-wide Cancer Alliance conferences. Each one of the 19 Alliances will be holding a meeting in the next few months. If you are interested in survivorship, you can ask for a free ticket, and it is well worth going for the chance to network useful NHS folk who can smooth things when cancer care falls apart.

BUT -and this is a big problem.  Many of  these conferences pay lip service to ‘involving patients’.  The speaker who attracted the most attention at the Thames Valley conference was an ex-patient,Kris Hallenga, who has set up CoppaFeel, but the audience had few patients.

Why these conference are ‘must go to’

Anyone who believes NHS treats all patients equally, hasn’t experienced the difference between one area and another when it comes to cancer treatment.  So I was keen to attend my local Cancer Alliance conference to find out why I had experienced postcode lottery problems when moving into this area from another.

Cancer Alliances were set up after Cancer Networks saw the UK slide from 13th in European post-cancer survival rates to 25th. The Thames Valley areas’ Alliance is headed by Dr. Bernadette Lavery, who chaired the conference,  Looking elegant from her jacket to her smart shoes, she presided over a very enthusiastic and informative gathering.

Dr. Lavery has a high hurdle to overcome;  according to an article in the Daily Telegraph, cancer patients ARE being “exposed to a lottery”.  Oxfordshire area only receives £1.32 per head funding from NHS England’s cancer transformation fund; my previous area receives £1.57 – and spread over the population, that 25p per head makes such a difference that 9 months after I came to live here, I still haven’t seen some consultants for important check-ups.  Yet the NHS will pay for my transport to go back to see my previous consultants – a two-hour journey kindly provided by hospital tranport! What a waste.

Greater Manchester receives £5.18 per head from the fund; but then their Mayor is Andy Burnham, ex-Minister of State for Health.

Conference proceedings

The organisers kept very much to the NHS script. No surprises there.  Speaker after speaker repeated the mantra of 14 days for a referral (actually – they forget to factor in weekends so it’s nearer 18 days) and 62 days to start treatment; such a long wait would horrify European friends.  But when Kris Hallenga, a patient who set out to improve cancer care by founding the charity CoppaFeel, got up to speak, one wishes the NHS would make more use of patients like her to show the service how it can improve.

As a survivor, she is still undergoing treatment (one of those the NHS tends to overlook).   She gave a fascinating account of her  My highlights include watching B*Witctched and being on stage with Dr Alex from Love Islandtreatment pathway, and it was obvious she had experienced the ‘post code lottery’ along the way.   She made me very envious – as a survivor she now has a CNS, something or someone who is almost impossible to find, but  Kris had managed this miracle!

It was refreshing to hear her factual and often funny talk about her cancer treatments.  Charities today tend to wheel out patients to spout their version of ‘how I suffered on my cancer journey’; frankly, those of us who have cancer don’t want to be reminded, and NHS staff want facts, figures and some way of delivering care at a cheaper cost.  But Kris used humour allied to throw-away facts that gave a much more accurate and telling story.

Another inspiring speaker was Prof. Mark Middleton.  As Head of University of Oxford’s Department of Oncology, he spoke on ‘Research – does it really matter’.  He proceeded to give a fascinating explanation that proved research did matter.  Talking about “there’s got to be a better way of doing this”, I was reminded of the number of times top oncologists around the world have lauded the research we do in the UK, but then gone on to say that the NHS takes too long to pick up on this.

Time and time again we read of research going on, but it is picked up by others.  Or we get NICE involved;  when we were part of Europe it astonished me the way drugs were approved by the European agency, then we petulantly insisted the company had to pay NICE again to test them, so involving more cost and delaying acceptance. Europe must have known what it was doing,  it was Lord Darzi who commented at a Britain Against Cancer Conference, “can anyone tell me what use is NICE?”

Clothes maketh Man

I know these should have nothing to do with my treatment, but as a Patient desperately clutching at straws, I can tell you that seeing a doctor speaking, who was not only dressed formally but was wearing well-polished shoes, gave me a feeling of confidence!   Sorry, but trainers and sloppy gear don’t impress me.  I’ll probably embarrass her, but when Monique Audiferen, the Alliance Manager, got up to give a clear introduction to the event, looking efficient and elegant, and introduced speakers like Dr. Anant Sachdev, with his polished shoes, I feel I am back in Europe where it’s not gimmicks and cost cutting that rule cancer care, but expertise and treating the patient like human beings.  There clinical staff believe in paying patients the compliment of dressing formally.

Dr. Sachdev said it all, when he commented that “the NHS is good at re-inventing the wheel” (and claiming they thought it up), and asked “how do we find resources in one place”? I know exactly where, but the NHS needs to stop being arrogant and ask experts outside the medical field how to get information out to GPs.  Because it is ridiculous to expect the average GP to know all about problems from diabetes to CJD. And then add the problems associated with needs for treating 200 different cancers.

I donPerhaps the TVCA could be the first to devise templates for their GPs that they can call up on their computer screen when talking to a patient. Something that they can print out whilst the patient is there, giving accurate infomation on symptoms, what causes them, how to treat etc.  This could be such an effective way of getting information across, yet I don’t know of any surgery so far that is providing this.   

But the new Minister is keen on IT, so tell him to get on with templates for all the side effects from cancer drugs – lymphoedema, neuropathy, hot flushes, nausea, osteoporosis etc., and make it accessible by a click on their computer, with a list of the consultants at local hospitals who deal with these symptoms; let GPs in the Thames Valley be the first to access this. I had problems with drugs re-acting against each other.  50 yards from my GP in London was The Royal Brompton hospital, where THE expert, Dr. Alexander Lyon, works.  I had to find Dr Lyon myself, my GP hadn’t a clue.

Perhaps the idea of a tool-kit for survivors might be something good to come out of this day? The information is there, and with Sachdev’s expertise this could be something positive to take on.  Speakers kept on talking about HNA (holistic needs assessments), but when the nurses in the Cancer Alliance CEO’s own hospital refuse to use this document, the TVCA could surely come up with something better? It’s not rocket science.

I really agreed with Dr. Shelley Hayles, who doesn’t like the 62 day target.  She seems to agree with European thinking that this is far too long to keep people waiting.  Dr. Hayles mentioned that she was happy that referrals probably turned in only a 10% positive result, but often other problems had been caught early, and this could only be a good thing. “We want most of our patients NOT to have cancer”, was her message.  But catching the positives early saved money on treatment, so this was a win-win situation.

And like many of us, she doesn’t like the 62 day target.  Who would, if they had to wait that long?


This is the type of gathering that can only be useful.

  • For networking
  • For referring to the list of delegates when you need to find something out.
  • For interested patients, who want to know who in their area is au fait with something they need, but no-one can tell them where to find it.

And it’s inspired me to set up a Wellness Day in the Oxfordshire area: HAVING FUN AFTER CANCER  

More details from verite@greenbee.net or fill in form below; but keep April 12th!

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