28.11.17
Am I alone, or are others fed up with TV ads and speakers harping on about how cancer makes them feel, and how they bravely got through it. We all know what it’s like – what we need is a strong charity behind us who will act as advocates, going forward to lobby for better care.
Recently Macmillan has had mega-expensive ads on TV, featuring weepy scenarios, but not saying anything positive to show how our care can be improved. At the launch of the London Cancer Community (LCC) there was the obligatory patient telling us her story,, but NOTHING saying what she was going to do to improve care. I had signed up, expecting to be given a role to push for better care, similar to the roles that Europa Donna and the American cancer Navigators have. They are a force advocating effectively for better care. Two weeks on – and nothing assigned or given to me to do, so am beginning go wonder if all the expensive two-day training and meetings were a waste of time.
As a member of Europa Donna, I get more information and ‘asks’ than I do from my home charity.
I am rarin’ to go – but if Macmillan doesn’t give me something to do – I’ll lose interest. Phoning the Macmillan HQ (within sight of where LCC’s launch was held) I asked the switchboard if I could talk to someone. “What’s the London Cancer Community?” this Macmillan employee asks me. So I contact the Press Office for a press release. A week later still nothing.
It’s acknowledged that patients’ expertise is under-utilised, so why doesn’t Macmillan make use of the huge amount of enthusiasm and expertise that is there? And stop using us to give sob stories about ‘how I suffered’; give us a role to push for better care, particularly for survivors. GP ‘surveillance’ is not good enough.
21.11.17
Tomorrow sees the launch of the London Cancer Community. Hurrah! This is Macmillan’s brave initiative to do something about the poor cancer care we put up with in London: much longer waiting lists than rest of UK, nine out of ten of the worst-performing cancer hospitals in Britain, not one of London’s cancer hospitals in the world’s top 100, etc.
Macmillan has just published a report on Cancer Inequalities in London – Mind the Gap, which makes dismal reading, but highlights just how bad is our treatment in comparison with rest of the country : https://www.macmillan.org.uk/_images/4057%20MAC%20Report%202017_tcm9-319858.pdf
The event is being held at City Hall, London’s wobbly-egg shaped Town Hall, whose website shows a picture of a ramp-staircase under ‘Disabled Access’, but no mention that anyone who can’t walk the 170 yards to the entrance has to drive in past the rubbish bins!
Let’s hope the LCC becomes a force to be reckoned with, and addresses the inequalities and complacency shown by some of London’s cancer professionals.
15.11.17
What on earth is the Dept. Health (DH) up to? We pay our taxes to fund the NHS. and I swear there are lots of nasty civil servants running around thinking up ways to save the billions demanded by the Treasury. And in the process making sure that we get less and less medical care.
If you are a trusting soul, latest idea is devilishly clever. Once, if a Consultant wanted to refer you to a colleague in their hospital, they would lift up the phone and arrange this. Then it came out that they had to fill in a form (that delayed you a bit) and someone from their hospital would arrange an appointment. Now, to make sure you wait as long as possible (and hopefully go off privately), the Consultants with years of training and being over-ruled by DH, aren’t allowed to refer you to their colleague, but have to tell you to go back to your GP and get them to refer you back to the hospital.
Best of luck; the DH knows that waiting time to see the GP can be up to three weeks. Then the GP has to get their Secretary to send a letter to hospital (another 3 – 4 weeks delay) and then the hospital puts you in the ‘system’. Result is a lovely long delay (for DH) and by the time you get your appointment you have forgotten what was wrong/given up/emigrated or gone privately. Whatever you choose, the sanctimonious civil servants smirk “it’s your choice”.
When are we going to get our MPs to ask questions of the DH about this latest scam?