Breast Cancer Care make their mark

BREAST

CANCER

CARE

.

.

CALL ATTENTION TO

SECONDARY BREAST

CANCER WITH A LARGE

QUESTION MARK

When the girls at Breast Cancer Care (BBC)  get  going, they come up with bright ideas – such as this huge  question mark that met MPs  on their way to Parliament.

Idea was to highlight lack of knowledge of numbers with secondary breast cancer – hence those with  this condition often have poor care.

This month, as I’m sure you will have noticed, is Breast Cancer Awareness Month. As part of this, Breast Cancer Care is spearheading the first ever Secondary Breast Cancer Awareness Day.

The day was about raising awareness and promoting Breast Cancer Care’s

Spotlight on Secondary Breast Cancer Campaign.

First objective is to call on the government to record accurately the number of people affected by secondary breast cancer in the UK.

There are no statistics that say how many now have this.  No-one has even done the simplest of surveys.  All we do know is that there are only 19 Secondary Breast Cancer Nurses to look after those with this devastating diagnosis;  these nurses are spread across the whole of the UK – very, very thinly.  Chances of a Secondary Breast Cancer (SBC) actually being looked after by one of these essential professionals is almost minimal.

What is known is that of those with SBC,  many are neglected, sent to the back of the queue, ignored etc.  Whilst most people are familiar with the implications of having breast cancer,  many people, including nurses,  are unaware of what it means to have SBC.

Secondary breast cancer occurs when breast cancer cells spread from the first, primary tumour in the breast to another distant part of your body via the bloodstream or lymphatic system. It can’t be cured, but it can be controlled, sometimes for a number of years. BCC want more people to understand what it can be like to live with secondary breast cancer, and to make sure that the right support is there for anyone affected.

What’s planned

The girls (and some men) at BCC aim to bring SBC issues to the Government’s attention, and as a first shot they invited a group of women with SBC to meet up with a powerful group of really committed MPs from the All Party Parliamentary Group on Breast Cancer.  This is one of the best-attended groups in Parliament, and during the excellent and informative speeches from MPs such as Steve Brine.  Annette Brooke, wetc. one heard ‘old-fashioned’ parliamentary expertise being focussed for constituent’s good.

It is rare to meet up with an MP today who has really studied a knotty problem, but those who spoke at the meeting really knew their stuff.    They spoke movingly and succinctly about how cancer problems had affected them, and were full of very sensible suggestions as to how SBC and its lack of suitable care could be effectively bought to the Government’s attention.

It didn’t hurt to have Andy Burnham (ex-health Minister in last Government) get involved.  Constantly quoting from the Briefing notes sent to him by BCC, he really knew his stuff.  Members of his family had had cancer, and even though he is now in Opposition, and no longer has health in his brief, he was still campaigning for better detection rates.  Musing about this, he said that his party (Labour) had wanted to bring down waiting times for screening to one week – bringing us up to many European countries’ rate.

He made a very strong point that one good thing about treatment in Europe is that patients can usually go straight to a Consultant if they wish.  In most cases there is no need to wait for a letter from the GP, which can hold up action.  There, you are assumed to have a brain, and if you decide to go straight to a Consultant – you can do this.  One way the NHS could save money would be to scrap this pointless ‘you need a GP’s referral letter’ system, if it is not needed.

But what came over well was that here was a politician who had passionately believed in his brief, and was strong enough to stand up and admit “we hadn’t done very well” in some instances.  Although he had his leg pulled by the sponsor of the meeting, Lord Janner.  As Greville Janner, he had been an MP for 27 years, and laughingly told the audience that this was probably the first time Burnham had answered questions!

He was fully in support of Steve Brine, MP,who  chairs the All Party Group made up of MPs from all over the house, Conservative, Lib Dem, Labour etc.  Brine has tabled an Early Day Motion  number 771) on “this House recognises the need to collect accurate statistics on the number of people diagnosed with secondary, metastatic, breast cancer; congratulates Breast Cancer Care onits work to raise awareness of and improve treatment for people with secondary breast cancer; and welcomes the first ever Secondary Breast Cancer Awareness Day on 13 October 2010.

So what can YOU do  next?

It is every cancer survivors’ dread that they develop a secondary cancer;  to many, this dread has become reality.  So we can all do our bit to get better care for those for whom this happens.

  1. Ask your MP to support Steve Brine’s Early Day Motion
  2. Ask your local cancer hospital if they have a Secondary Breast Care specialist nures – and if not, why not?

This is the ideal time to do this, as the Government is determined to get cancer care right, and a good shove in the right direction will make them think.

Way Forward

The audience were composed of bright, articulate women – and a few men.  When Burnham stressed that early detection was vital, one commented on the current scrappy, photocopied letter that was sent out with a screening appointment.  She suggested that instead this should be in the form of a well-presented letter, inviting women to ‘come and meet the team’ over a cup of coffee – and have a mammogram.

And everyone was urged to take the two steps above – voices can be a strong campaigning tool.

www.breastcancercare.org.uk

2 thoughts on “Breast Cancer Care make their mark

  1. doris fenech October 22, 2010 at 9:26 am Reply

    Congratulations on a very informative and realistic site.
    I was diagnosed with metastatic breast cancer 2 years ago and can understand the truth about what you wrote.
    You gave me some ideas which I will pass to my colleagues.
    Keep up the good work and awareness

    • Verite Reily Collins October 23, 2010 at 2:46 am Reply

      Doris
      Thanks for very encouraging words – I am always conscious that readers will have faced enormous problems, so it is nice to know that some of what I write will be helpful.
      Verite

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