Cancer patients needn't feel guilty

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Politicians put patients with cancer first – because ….

We get off our Bxxxxxs and ASK

I used to feel guilty about this – here was I – a cancer patient – and if I went to the doctor and said “I think I have cancer”, officially I was to be fast-tracked through and get tests within two weeks.

Those with other problems, from hips to heart, joined the lengthy NHS queue, even though their need was just as great.

When I needed expensive drugs – one little murmur from my GP re prescribing these, cost etc., and it was on to the PCT who caved in immediately to give me the drugs.

The Telegraph’s resident doctor, Max Pemberton‘s latest article addresses this problem.  What he writes is  interesting to read; on appalling treatment for OAPs, how we treat dementia patients, etc.  he is always spot on.

His latest article on treating cancer patients asks “what about other illnesses?”

He is right

But before we feel guilty that we are getting what we ask for, just remember;

it was our parents and us who fought for better cancer treatment.  When my mother had breast cancer 40 years ago all her friends spoke about her condition in whispers. Mother defied them, told anyone who was interested that she had  cancer, and her generation bought this problem out of the closet.  Today, we are used to talking about cancer, and I meet up with other survivors who have no hesitation in saying what type of cancer they have.

But I also had polio as a child, and picked up problems such as osteoporosis from side effects of drugs along the way. Now I find the attitude towards tackling problems caused by these conditions, especially in the NHS, is totally different, and I have to fight for what I need on my own.

The Westminster Fly-in is a highlight of the year for many of us on the campaign trail, and 0rganised (extremely efficiently) by Breakthrough Breast Cancer.  At the event we get to meet up with fellow breast cancer patients, which always produces some thoughtful approach to problems that might just work for me ……

On the day, Breakthrough Breast Cancer gets a large group of MPs through the door to be lobbied, talked to and sent away clued up with knowledge to fight on our behalf.

Now contrast this with Polio.  The NHS gingerly comes up with the figure that there are ‘probably’ 120,000 of us in Britain:  not enough to get their iron knickers in a twist over our treatment.

But if we lived in the States doctors WOULD know about it.  Campaigners have found that there are 3 million polio survivors in the States;  we had the same incidence of polio in our population, so taking their figures as an example, we probably have at least 600,000 polio survivors in Britain.  Many of us have a condition that presents itself when we are over 50 called Post Polio Syndrome, repeating the problems we had as children, with added twists – but only a few stalwarts are there to lobby on our behalf.

If people such as Lord Snowden, and other survivors, got up and made a fuss – we would soon have more recognition.  But trawling through a Wikipedia list of polio survivors, very very few, apart from Mia Farrow,  ever campaign on behalf of survivors.  Yet, Google: ‘Breast Cancer celebs’ – and the picture is very different;  every survivor now wants to be associated with campaigning about this disease.

The same with Osteoporosis – there are thousands of us in Britain; cancer patients  who were put on aromatase inhibitors, told we might get the disease, and when we did were just told to go home and exercise.  In Europe patients don’t stand for that – they have demanded proper exercise programmes, and since I have been following a similar programme I have reversed my Osteoporosis by 21%.

This little victory is of no interest whatsoever to my local hospital, who don’t want to help me as I would be using NHS resources (which at the moment are lying idle in the hospital gym).  The equipment was provided (as little plaques tell us on every piece of eqipment) by the Friends of the hospital (Mother was one of their fund-raisers).  When I contact the Chairman of the Friends, to say why isn’t this equipment available for people who might want to use it, she weakly talks about “hospital policy”.

Luckily my MP, Greg Hands, is a really good constituency MP, and tirelessly contacts officials on my behalf.

But, the shining example of good NHS care comes if you have a heart problem.  Bad news is ASCO conference in U.S. last year came out with around one in four of us will have heart problems if we take aromatase inhibitors;  good news is, if you have to go into the Brompton Hospital for treatment, you are amazed at how well the NHS can perform – when it wants to.  Cancer hospitals could learn so much from this hospital, particularly with their fantastic drugs telephone helpline.

And we only have to look at how Help for Heroes has bought amputees out of the homes in which they would once have retired.  Their lobbying is incredibly effective, and nearly £100 million pounds worth of funds raised are producing an awful lot of practical help.  It is always energising to join in with any H4H event;  they are focussed;  everyone is given something to do, and everyone gets on with it.  When I have been involved in a H4H, event planning is done by email, and we don’t take no for an answer – just think of ways around the problem that will please everyone.

Other charities could learn a lot from lobbying and  events in aid of cancer, H4H and Heart.  We, as cancer patients don’t need to feel embarrassed;  we got on with lobbying, planning, writing and begging – just don’t feel upset because others sit down and don’t get on with fighting for better NHS care.

As Max Pemberton says, “I don’t want to deny someone who has cancer even the slimmest glimmer of hope. But conversely, just because the diagnosis of cancer is so emotive, I don’t want to see treatments that have proven benefit being denied to people with other conditions. I can’t help but think that if people knew the reality of the Cancer Drugs Fund, it wouldn’t be such a vote winner”.

He’s right there – but if no-one else fights like we  do – we can’t blame ourselves if we get more than our fair share.

Get Involved

Contact Breakthrough Breast Cancer about being involved in the Westminster Fly-In.  It doesn’t matter where you live, they raise money so that anyone in UK can come and lobby their MP.    Once you sign up, they send you frequent updates to give you help in how to lobby your MP, what to write, and how else you can help.

Next Event: Monday 17th and Tues. 18th October, 2011

Not only is the event great fun, because you meet others who get on with things! – but you learn an enormous amount about how to put carry out effective lobbying.

Contact or 020 7025 2584

See you there!

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