National Cancer Intelligence Network
The N.C.I.N. organised this conference, which was held at Birmingham’s N.E.C,.
This was a brave attempt at involving patients and professionals equally. However, it did prove that medical professionals may pay lip service to ‘involving’ patients, but often, in reality, have difficulty in addressing this issue.
Paying lip service
The aim of the conference was laudable; patients were to be treated as equals. In fact, we were even given free accommodation and free travel if we were a genuine patient.
However, the professionals were still being condescending, and not quite up to sharing information equally.
But patients are used to this, and we all got useful information from the event. Out of around 500 delegates, probably one fifth were patients, so we weren’t overwhelmed!
Speakers were generally excellent, and as other delegates confirmed, they didn’t ‘talk down’ to us. They spoke enthusiastically, and didn’t use too much jargon!
Ray Murphy, Chairman of the National Cancer Partnership Forum kicked off with the chilling statement :
“we needed to save 5,000 liver patients’ lives a year just to keep up with Europe”.
Dr. Mick Peake, from the N. C.I.N. said there was a need to enthuse doctors to use cancer data to change clinical practice as it is currently.
As Dr. Natalie Blencower stated, when she gave an excellent presentation about outcomes and why they are important to patients AND surgeons, a recent survey had found that “patients were still not receiving enough information”.
What’s happening in Europe?
Proving that the N.C.I.N. are not only concerned about the EU’s better cancer outcomes, but were keen to do something about it – a major session saw Dr Jane Hanson, Lead Advisor for Cancer, Welsh Government & Head of Cancer National Specialist Advisory Group Core Team, introduce a session entitled ‘Towards a European cancer information system; the EUROCOURSE project and beyond”.
This was followed by presentations from Harry Comber, Director, Irish National Cancer Registry on ‘ Cancer survival in Europe’: “first results from the EUROCARE-5 study.
Dr Roberta De Angelis, Senior Researcher, National Centre of Epidemiology, Italian National Institute of Health talked about ‘The International Cancer Benchmarking Partnership (ICBP), and Dr Martine Bomb, Programme Manager, Cancer Research UK gave the UK perspective.
These were all excellent speakers, but one couldn’t help wishing that more time had been allotted, to enable the very interested audience to have an opportunity to ask questions and get a good dialogue going. A packed room was filled with delegates eager to ask questions – but sadly not enough time to get them out.
One piece of information that was flashed onto the screens was a slide showing where research was being carried out in Europe:
10 work packages have been produced, covering
- WP1 Exchange of knowledge about national programmes
- WP2 Ethical conduct of research
- WP3 Tools for improving the quality, coverage and use of cancer registration data in Europe
- WP4 The development, harmonization, analysis and exchange of European cancer registry data
- WP5 Interface of cancer registries with cancer screening programmes
- WP6 Interface of cancer registries with clinical care
- WP7 Interface of cancer registries with biobanks
- WP8 Dissemination of findings and training
- WP9 European cancer control summit
- WP10 Coordination of EUROCOURSE activities
Perhaps next year there might be more time to discuss these work packages, and a hand-out giving contact details?
Whilst browsing this very interesting and colourful display, I came across Marina Raime, the lively founder of Betterdays cancer care. Marina went to the States and took one of their Patient Navigation courses, and is now running a programme in London – supported by Lambeth, Southark and other NHS offices. Let’s hope this programme receives a lot of support, as we could certainly do with the survivorship assistance that seems to be the norm in the U.S.A. www.betterdays.uk.com or at King’s College: www.selbreastscreening.org.uk
It is not acceptable in this day and age for the catering at a conference dealing with cancer, to go against al the advice to eat healthily, organically, etc.
At breakfast, a casual remark to the waiter “are the eggs free range?”, bought out
an embarrassed, “no, we don’t serve free-range eggs any more.
It was difficult during the main meals to find free-range chicken meat either – instead there were bland palid looking main dishes – which cried out for herbs.
Neither is it acceptable in this day and age for the Maintenance crew to spend more time in guests’ bedrooms than the paying guest. The final straw in my room, where I had almost got used to sharing the room with the friendly maintenance man, was to have to call the poor man yet again as water was dripping loudly on my carpet and soaking the area.
I can’t help feeling that a professional organiser might be usefully employed – ordinary delegates to professional conferences demand better facilities and services for their payments – but when a charity or the NHS is picking up the tab – perhaps standards are allowed to drop. Even though, from comments from staff, it didn’t seem that this conference had got any cheap deals.
Certainly a normal ‘business’ hotel wouldn’t get away with charging £15 PER DAY for Internet access in a delegate’s room.
On Friday evening after the conference was over, a local friend took me to a superb hotel near-by: Hampton Manor, to show me what could be done for the same basic costs. She works in conference and exhibition organising, so knows what’s what.
Hampton Manor provided a superb meal – and I noticed all the a la carte menu prices were less than those in the Hilton’s main restaurant. Yes, organisers would have negotiated a cheap deal but basic prices are ones which to work from when negotiating.
Prices at this hotel were a rack rate of £150 per night – although they had special deals
from £85. Sadly it would be too small for a major conference, but if they can do it – why
not search for other hotels that can deliver same superb service?
But as usual Virgin Trains had come up with excellent deals, and speaking to others with disabilities, we had welcomed the way there always seems a cheerful staff member on hand to help with luggage – much appreciated!
The next Cancer Outcomes Conference will take place on the 13th and 14th June, 2013..
National Cancer Intelligence Network (NCIN)
18th Floor, Portland House,
Phone: 020 8282 6258
Fax: 020 7869 8191