Where is the Ieader to bring our cancer care into 21st century?

Latest shocking statistics on Breast Cancer show UK STILL lags behind Europe

Yet no-one at Dept. Health, NHS or anywhere else has come up with a solution to improve cancer survival outcomes.

 

Breast Cancer Now

Has just produced a shocking report showing, with official stats and figures, just how bad is our care in comparison with other countries.

As an interested onlooker, it seems cancer care in Britain has been a victim of political in-fighting;  in London alone there are nine supposedly ‘official’ groups looking into the City’s cancer needs – all fighting their own corner and no-one talking to the other.

Yes – survival figures are climbing in Britain, yet other countries are improving too, at a faster rate, so we still lag behind.  What we need is a prominent figurehead to campaign for better care. Years ago Americans realised this, and look at the success they had with breast cancer awareness etc. An Army of pink-ribboned women drove awareness into every corner of the globe.Image result

In the past ten years, the UK’s place in post-cancer survivorship tables has dropped from 13th to 25th in Europe  (these are World Health Organisation statistics not mine).  Tackling Andrew Lansley (ex-Minister) about this decline, he just wriggled, mumbled and looked madly around for an official to rescue him.  The current Weasel is no better.  Frankly, what we need is a female Minister;  I am not a feminist but women have a way of highlighting issues and effectively bringing them to people’s attention  e.g.  Lady Hoare and Thalidomide.  Not many people remember the scandal, but I was behind the scenes and watched as she involved friends from Judy Garland to her husband’s colleagues (he was Lord Mayor of the City of London), raised awareness in high places and fought for compensation for victims. .

Recent headlines featured Breast Cancer Now’s report into dereliction of duty by Ministers, highlighting our appalling lack of appropriate treatment.  Talking to friends in Europa Donna, I find it shaming that ex-Iron Curtain countries can offer better treatment to their nationals than we do in Britain. Having been treated in Europe for cancer, for me it is shaming to go into Outpatients in UK and find that our hospitals lack so many services that are regarded as norm elsewhere.

We have been brain-washed into believing that the NHS is the ‘envy’ of the world;  this report shows it ain’t.

And I can’t see any changes in the future:  the forthcoming All-Party Parliamentary Group on Cancer’s conference is full of the same speakers, with NOTHING new to say.  Macmillan (organisers) should stop fawning over useless Ministers and issue a rallying call to the NHS to pull its socks up. With speakers to back this up.  I remember at a previous om 2008. conference, Lord Darzi asking a question “Can anyone tell me what use is NICE?”  No answer then – and none now, yet we read that it is still refusing to licence cancer drugs that are readily available elsewhere in Europe.

What’s needed in Britain is to copy the brilliant campaigning that happened in the States, bringing breast cancer to everyone’s attention, and lobbying for better treatment. Led by Estêe Lauder, who threw all her families’ considerable wealth and resources behind an awareness campaign, she succeeded in making it acceptable to talk about this illness, and focussed the world’s attention on what could be improved.

We need to take up the banner, and campaign for improved cancer care in our own backyard.

In the UK, as Baroness Delyth Morgan head of Breast Cancer Now (BCN) says:

Delyth.jpg                                                                                                                                     “This continued lack of leadership across the UK nations will cost thousands more lives if simple opportunities to make further improvement continues to be inexcusably ignored”.

Ignored?  Sounds familiar?

Survivors who have gone through treatment and come out the other side, can find themselves ignored.  As a survivor, you want to stay healthy, and you know you are more likely to get a recurrence.  Yet I have yet to find any hospital where you can phone up to ask a simple question for reassurance. We are constantly told “Ask your GP”.  Yet GPs are not experts in cancer – they deal with our general health, not specifics.

So often poor care in the NHS is blamed on lack of funds, yet BCN’s report mentions 27,000 women are missing out on the latest treatments such as Tamoxifen – which is just 43p per day.  It is reckoned prescribing this to vulnerable patients could save an estimated 1,180 lives per year.  But our crazy, dis-jointed health service can’t seem to understand that prevention works out much cheaper than the cure.

This is a typical political cop-out.  And before we blame the Tories, it was a Labour Minister who came up with this crazy idea of devolving our post-treatment care out from the treating hospital to GPs.   My GP, who now heads the local CCG (chilling) even told me with pride “I don’t know anything about cancer”.  No wonder the CCG is known as the Cynical Commissioning Group. With such dis-interest, our local Healthwatch (Kensington and Chelsea) dissolved the 25-strong cancer group (consisting of hospital reps, patients, etc). without even letting anyone know.  This Healthwatch had decided cancer “is no longer a priority”.

What we need is a charismatic champion to scare the living daylights out of politicians, and get the Dept. Health (DH) off its backside and putting in place improved care, access, diagnostics etc. Currently the DH is moaning about a shortage of nurses, with Brexit encouraging so many overseas nurses to go home – you can’t blame them as no-one has had the guts to stand up and say their jobs are protected.  So what about those cancer hospitals facing a shortage, getting their patients to ask Mrs. May/DH/local MP to protect X number of their nurses, who don’t know if they will have a job soon or not.  Use lobbying techniques/petitions etc. in a positive way

In my survivorship struggle, I have become very racist;  I gravitate towards European nurses (it was a Hungarian who solved the problem of why my Lymphoedema treatment wasn’t working – none of the many British ones I saw had thought of her solution).  Yet if they leave, a whole lot of expertise will go with them.

Breast Cancer Now also mention a continued lack of leadership in the NHS, which will cost ‘thousands more lives,  The NHS system is broken, yet as patients what do we do to challenge this?

USE the internet.

If we are unhappy about our treatent, Google is there to help. The old myth about unreliable information supposes that we are too stupid to sort the wheat from the chaff.  Yet those who remember the case of Ashya King will remember that his father, having Googled for information, was able to challenge the hierachy.  The Proton Beam Therapy which saved Ashya was announced at the APPG conference in 2008, and yet still no machine is working in UK.

We need someone with old-fashioned guts to Kick A—- and get the complacent mandarins out of their air-conditioned offices and talking to Survivors – find out what WE want, don’t lecture us.  Because we are facing the reality – yet apparently BCN says 46% of doctors don’t even know  the benefits of Tamoxifen.

We don’t have to accept low standards

The government’s own objective is for all patients to be seen by a specialist within two weeks of an urgent referral for suspected breast cancer (apparently this target has been missed for three years in a row).  Yet tell a Dutch or French or any European woman to wait so long, and she would – rightly – be asking why?  In Europe the wait is generally 3 – 5 days, and most countries are trying to bring that down to 1 – 2 days.

When my GP sent me for tests, there was the usual wait so I just rang round all the hospitals and found one with a cancellation for the next day.

What we can do

Copy American women and become more assertive.  Americans often ask for a second opinion, yet in UK this seems unheard of. If you are unhappy with a diagnosis ASK for a second opinion.  When I went for my first treatment in France, I was told automatically that I would get to see another doctor to confirm what I was told.  We have the right to ask for one – so stick to your guns.  It is surprising how a second opinion can often throw up a slightly different diagnosis, and treatment that is better tailored to your needs.

Contact your MP

If you are not getting a diagnostic test within 14 days, or are unhappy with your treatment, don’t be afraid of contacting your MP. But if they are as useless as mine, I took advantage of the UK still being part of the EU, and found my MEP in Brussels got me the treatment I was denied by the NHS.  When I was again denied treatment for another condition, I only had to threaten that my next step would be contacting my MEP, and within half an hour I had been phoned back to say “in this instance, we will approve”.

Let MPs know that there won’t be any votes coming their way if you don’t get better care.  It concentrates their minds brilliantly.

Breast Cancer Now  http://breastcancernow.org/

Report : http://news.sky.com/story/dereliction-of-duty-to-breast-cancer-patients-11058467

 

 

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