All Party Parliamentary Group on Cancer’s Conference packed out

Arriving late, it was difficult to find a seat during the opening session – always a good sign.

John Healey, Shadow Sec. State for Health, was on the podium as I arrived –  being honest.

“We didn’t get it right when we were in Government”, he admitted.  “I’d like to see it (NHS) work …..  patients have an important role to play….  and the patient’s view should be strongly represented”.

But as he said, he was proud of the role he and his Government played in gettings Soking banned in so many areas.  It is too early to see the full benefits, but signs are that helping people stop smoking is have a very beneficial effect.

Andrew Lansley, as current Secretary of State for Health, was guaranteed a capacity audience in the afternoon  – but this time they didn’t seem quite as receptive as he might have hoped.  In the morning the session on his much-vaunted White Paper had been uncomplimentary.

He started off reminding us that Britain lags behind Europe in cancer patient survival rates.  This was a good statement to trot out when in opposition.  Now that his co-party are in power, it begs the question, ‘what are the coalition doing about it?’  Not a lot, judging by lack of information.

He repeated his mantra, “no decisions about me without me”, but needs to show that patients really are being listened to.  There are still big concerns over post-code lottery prescribing, and lack of improvement in services for elderly people.   Lansley said “cancer waiting time targets will be retained”, but delegates were saying that they were still too long.

John Baron, Chairman of the APPG on cancer, raised the point that we are not good at detection levels, and have a poor one year survival rates outcome.  Older people were still being denied access to services, particularly CNS (clinical nurse specialists), and reduction in mortality rates were worse for elderly patients.

“There needs to be a cultural shift in the NHS to realise for most, cancer is a long-term condition”.  But many patients still don’t feel they have a voice in their treatment.

Another well-attended session was on the White Paper.  Chaired by Grahame Morris, MP for Easington, a very much deprived ex-mining community.  We had all been given smart cards with YES on one side – NO on the other (bit like red tomatoes and green peppers in a well-known TV cookery programme).  When asked to vote, the audience wielded these with enthusiasm, although anyone from Dept. Health watching might have wished for a bit less eagerness, as the messages they gave out weren’t complimentary towards the White Papert.

  • 95% of the audience still thought there was a post-code lottery for cancer services
  • 98% didn’t think changes would improve cancer services
  • 1 % thought GPs would influence services

Maggie Alexander, Director of Policy Breakthrough Breast Cancer said  “more detail was needed, and she had real concerns on how GPs patient pathways will work”.  She also had reservations about GP commissioning, and heads were nodding around the room.

More details of how cancer drug funds were to be used were needed, and she was adamant “let’s not lose our expertise”.  Then asked, “will choice drive up standards,  or go back to post code lottery? ….   The White Papert raises as many questions as there are answers, and patient involvement must be significant, not tokenistic”.  And she would encourage the DH to work withcharities.

Who else was there?

Target Ovarian Cancer were out in force;  everywhere one looked there was a distinctive purple tee-shirt.  The team were delighted that, following months of campaigning, they had managed to get Andrew Lansley to say that GPs will be able to order ultrasound scans directly, to help speed up the diagnosis of ovarian cancer.

I met Lilian Wiles, the very practical and helpful Head of Patient Services atBeating Bowel Cancer.  She came over as someone to whom one could go for helpful advice, and told me that they are running a Patient Voices Event on 2nd April,  at the Royal College of Physicians during Bowel Cancer month.  Free to patients and carers.

During the Minister’s Q & A,Michael Peters, Chairman of the charity Love Hope Strength Foundation asked why, setting up a DNA data base,  Rock concert goers couldn’t  give a cheek swab, as they did in the States?  Apparently this is because here we need a blood test (more difficult and expensive to obtain) for assessing suitable donors because UK bone marrow transplant donor list is administered through or linked to the Blood Transfusion Service.  Now this would be a simple thing for Lansley to change, if he were minded to do this.  And save money.

In the 70s I was having my tonsils out in the same hospital where Anthony Nolan was being treated.  I would have liked to have met his mother, as she had same problems with medical establishment as many cancer patients do now.  Bone marrow transplants were not even a pin-prick in 99% of doctor’s understanding, She had to fight and fight to get awareness, and probably encountered the same problems when she asked “why”?, as doctors weren’t inclined to listen.  If this sounds familiar, go on website and see what positive things Mike Peters is doing to raise awareness.

As usual Organiser Uta Boeger-Brown, PhD, had done a fantastic job of setting up the conference.  This year it not only included the usual conference organisation, but also liaising with the Police as there was yet another demo planned.  But as I was leaving the team had up-to-the minute information, which enabled us to get home quickly from an excellent and stimulating day.

Albeit perhaps not so stimulating for Andrew Lansley;   he will have to learn that it is no use copying the last Government with their ‘new plan every day’ ideas for the White Paper.  It doesn’t work, as was evidenced by the real and genuine concerns being talked about in the break-out sessions and over lunch.  The DH needs to stop its lemming rush for change, and really think through the lessons learnt from this conference.