Westminster Fly-in

Westminster bursts with Pink!

Swopping her lab coat for a smart yellow jacket, Prof. Clare Isacke gave a fascinating and pertinent after-dinner speech to the assembled delegates to the Westminster Fly-in.
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As Deputy Director of the Breakthrough Breast Cancer Research Centre in London, Clare was the best person to update delegates on recent discoveries.  She talked about what she and her team are up to,  and  said the main focus of her laboratory’s work is on the spread of cancer from the breast to other sites in the body (the process known as metastasis).  Her team work  to achieve a much better understanding ofProfessor Clare Isacke

  • how cancers acquire the ability to grow into surrounding healthy tissue, and then spread around the body.
  • They then use this data to identify possible ways to prevent cancers from doing this.
  • And finally they hope to translate this information to develop new treatment options for breast cancer patients.

Speaking passionately and with great insight, she likened treating cancer to travelling on the underground, “the challenge is to find patients that can be treated by certain drugs”.  One sensed how frustrating it is for her and her team,  the number of dark tunnels that must crop up along the way.  But as she said,  “science underpins breast cancer survival improvement.  If we hadn’t invested in science we wouldn’t have got where we are now”.

Incidentally she must like bright colours – when not in the lab. she can be seen in a bright pink jump suit, her team uniform for Breakthrough’s Booby Birds, who so far have sky dived their way to raise a record £300,000.

Down to business

The next day, after all the Breakthrough members had been photographed in the distinctive shocking pink tee-shirts (see photos above and below), it was down to business.  The Breakthrough team do a fantastic job of supporting their networking members, and all morning a procession of MPs dutifully trotted over from Parliament to 1, Great George Street.  The building belongs to the Institution of Civil Engineers, and is just the right venue when you want to impress your MP.

With looks of determination on their faces, everyone waited in the impressive foyer for their MP, then whisked them off to brief them on what was required for better breast cancer treatment in their constituency.  The interesting thing to watch was the way that, after their meetings, instead of dashing back to the House of Commons, many MPs were interested enough to stay, chat to others or even sit in on one of the many top class talks.

Politicians put aside rivalries to campaign for better cancer care

One of those who stayed to address the meeting was Steve Brine, the young and energetic chairman of The All Party Parliamentary Group on Cancer (APPGC).

Calling cancer “this XXXXXXXX disease!”, he has pledged to support Breakthrough’s Touch, Look, Check breast awareness campaign.  Commenting on the way the APPGC works together, he said it is the biggest parliamentary group after the All-party beer group, who had also held their meeting in Great George Street.  “As a member I was forced to go along to this.”

He is a devoted to helping cancer patients, having spoken at Breast Cancer Care’s event the week before, and his speech showed that he is alive to the problems faced by survivors.  One good point;  he knows he has the support of the Prime Minister, who told him “go in there and blow away the cobwebs”.  And he mentioned his constituency is Winchester, with its massive watercress beds.  He is keeping a beady eye on the research into how this plant can help cancer patients.

Sponsors

Pfizer and Roche had sponsored this impressive meeting, and without their support it would not have been possible.  One could have wished they hadn’t been quite so self-effacing;  after Clare’s talk it would have been interesting to talk to their scientists on the work they are doing for the future.

Meeting the scientists might answer some queries as to why drugs are so expensive;  another speaker had mentioned that it can cost £2 BILLION to develop a drug – and there was no figure for how much it costs for all those drugs that fall by the wayside before development.

Social Media

The day was about giving us the tools to get out there and campaign effectively, and Social media such as Twitter, Facebook etc. are very effective tools.  Kate Cooper from http://www.digitaltrainingcompany.com was there to show us the ropes, and produced a very effective Social Media Toolkit which I am looking at now – and intend to use to ‘up’ my skills.

Recurring Themes

When Jeremy Hughes,  CEO, opened the meeting, he mentioned again the theme which has carried through all the cancer meetings this month – NHS v. European treatment.  We keep on hearing how much better treatment is in Europe, but anyone who hasn’t been lucky enough to be treated in Europe must be wondering what all the fuss is about.  Perhaps next year we could have some European Oncologists come to talk to us?  On second thoughts – perhaps best not;  we could get very jealous!

But another theme was the post-code lottery, and also how Breakthrough members should campaign to ensure all 70 diagnostic units offer digital mammography to those who want it – not just those who fall within the selected age group.   So far only ten out of the units are all-digital.

Julia Wilson gave a fascinating talk on Personalised Medicine.   Currently between 30 – 70% of patients respond to drugs, leaving many with horrible side effects and wondering if it was all worth it.  Soon, it will be possible for everybody to have access to monitoring, which will be able to predict what type of response we may have to drugs.

Afterwards we spoke about Dr. James Mackay, the Medical Genetic Oncologist who practices from 108, Harley Street, and is at the forefront of personalised medicine.  At the moment he is the only person I know of who advises in this field.  But with most US cancer hospitals starting to offer personalised medicine, this is for the future – and not such a distant future if Julia has her way.

The White Paper and its requirements raised a lot of discussion.  As Maggie Alexander, Breakthrough’s Policy Director said, “this (paper) raises a lot of questions”.  One of the key themes running through the paper is patient involvement, but one wonders if every patient actually wants to be involved?  How can the average patient know who will be the best consultant to treat them, etc?

Commenting on the upheaval currently caused by the White Paper, Maggie said, “no sooner do we get to understand the changes proposed in one report” – than we have a change yet again.  On our discussion table we all wondered how GPs were going to find the time to deal with the changes, and fill out all the forms for commissioning that previously were dealt with by the soon-to-be-redundant PCTs.

What was aired in discussions
The mood around the tables echoed one member in our group, talking about the White Paper, who said “this seems fraught with problems”.
  • This bought up the issue of QOFs (which are the means of paying for services from central funds), and the fact that cancer patients are allocated on the scale of 6 QOFs – yet those with diabetes, dementia, etc.  are allocated 90 QOFs.  It didn’t take a genius to realise that doctors with heavy surgery overheads would spend more time on training to deal with the diseases that allocated higher QOFs.
  • And again there was comment about how patients should be involved with training.   Currently many hospitals use actors for exams, but how much better it would be to have patients.  There must be many actors who are also patients, and who would welcome the fee that ‘ordinary’ actors receive.
  • NHS Websites came in for criticism, especially those on Social Care and survivorship.  As one member said, “it is difficult to comment via their website – and they should adopt a better approach to involving patients.
  • Overall, members expressed concerns over the still existing post-code lottery.  Regional variations could mean GPs placing – say – means and treatment for diabetics above those for cancer patients in importance.
  • Another thing to watch out for – a member pointed out there was no mention of nurses they could find in the White Paper – so those who are lucky enough to have a good one should campaign hard to keep them.
  • There was a demand for statistics on how many Secondary Breast Cancer Patients there are in UK overall.  Without accurate figures it is difficult to challenge why there are only 19 Secondary BCNs in the whole of the UK.
  • GPs need to be trained NOT to send away younger patients who suspect they may have Breast Cancer.

Wrapping up the event, Nicole Reece, a patient, gave a very strong message that patients should be involved more – there was enormous strength in the first-person experience.

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