MANY of us, especially with rarer cancers, now seem to have to fight so very hard simply to stay alive in the face of both this appalling disease and on so many other fronts.

This is not good for us. The reality is we just cannot relax, with many of us daily having to try to keep abreast of the never ending threat of further drug and treatment rationing.

Now that Pandora’s Box has been opened and the population can see the excellent advances taking place in cancer treatment and survival by new innovative procedures it is unforgiveable that even now our NHS leaders are seeking ways to reduce the cancer budgets, which seem to be in need of better management.

A full revaluation of the drugs presently available to over 55,000 cancer patients thanks to the Prime Minister’s Cancer Drugs Fund has just been announced and will lead to many of our drugs and other treatments once again beginning to disappear as a fading promise of hope.

It appears they intend to continue to use cancer patients once again as the soft option to achieve healthcare fiscal budgets rather than achieve clinical progress. We feel that no one really cares any more.

I have once again been in the wars since returning from my last little escape to the coast as I was admitted twice by emergency ambulance to the A&E Department at the John Radcliffe a few weeks ago due to contra- indications.

I had become totally exhausted and needed to rest. I have to say the paramedics were very quick to respond and I was soon feeling in safe hands.

The team in A&E were again quite remarkable despite the continuous pressure they are under on their long shifts, and of course they have to cope with anything that’s thrown at them.

An X-Ray found I had a lung infection, which is always scary as I already have cancer in both lungs, in addition to many other sites. I was soon sent home after suffering only a day of the hospital food challenge (which I will tell you about another time) with a week’s course of strong antibiotics.

The frontline staff are very special people and they deserve to be much better remunerated by the trust, especially when one compares the sums being paid to the many hospital middle and senior managers, who have had larger pay rises for some reason. I read recently that Simon Stevens, NHS England CEO, is to insist that those who receive bumper redundancy payouts will be forced to pay them back if they are rehired soon after, under new rules to be introduced. Some of these administrators on six-figure salaries will have funds clawed back.

I read a few days ago of some of the problems at Medway Foundation Trust, where some patients have spent up to 35 hours in A&E. During this year, the trust has hired more than 30 interim managers on six-figure packages, on annual rates worth up to £540,000.

No wonder the NHS is fast becoming unsustainable. This pay gap will become ever wider on further promotion of managers, whose accountabilities and responsibilities appear so unclear to many of us as we never see them.

Our local trust has a real problem in recruiting staff due to the high cost of living in the catchment area, which means they now have to recruit many more expensive bank staff and eat further into their budgets.

As a cancer patient living alone with no carer, it’s important I adopt strict rules to survive, and so I try to recognise problems before they get out of hand.

Most of this information is knowledge gained from sharing it and experiences with other patients in our own self-funded Kidney Cancer Support Network, which is also involved in campaigning.

So if you ever find yourself unlucky enough to be diagnosed with cancer, I would urge you to seek out a similar patient-run group relevant to your own cancer, or start one up. A number of my fellow kidney cancer patients throughout the country have been able to find alternative and often better treatments.

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I have since been advised that it appears there is now no real evidence of more cancer in my brain, which is a great relief, thanks to gamma knife (GK) treatment that gave me another four years of life, although it cost me £30k from my retirement savings.

However, my last CT scan result came as a shock to me as it showed minor progression of my cancer in several places, with one tumour encroaching on my spine, and so I have been offered an appointment to see if this can indeed be shrunk at all by radiotherapy, and wait to hear something soon.

There is a strong possibility that if not caught in time I will become paralysed and end up costing the NHS even more.

I have long been comforted by the thought there is no real cause for alarm as I can now have free access to Axitinib – a proven second line drug – if ever my Sutent stops working, as it is has been available under the Cancer Drugs Fund. Or so I thought, as it appears that Axitinib is now to be revaluated.

The Cancer Drugs Fund (CDF) revaluation came as a complete shock to many. For those of you who don’t have cancer, it may have escaped your notice the senior people at NHS England have recently taken the decision to revaluate the present list of drugs made available under the CDF.

It was intended to last until 2016, and recently increased to £280m a year by our Prime Minister, who introduced the fund as NICE was declining too many drugs that worked but were considered too expensive.

The final decision on remaining available drugs will be announced on Monday to many vulnerable and very sick people.

Some 25 drugs that are felt to be too expensive for the NHS, but available under the CDF, are to be withdrawn.

Two years ago there was a surplus of £60m in the CDF and we now find it impossible to ascertain the present figure. I have written to the Office of National Statistics for relevant audit information regarding the CDF, as I do hope this decision is not being made in the absence of the full information.

The sad thing about all this is that patients and support groups were only given a four-week consultation period to prepare our response, with many patients either too sick or unable to understand, or even have the energy to comprehend the full implications.

We were also so shocked to learn all 189 responses were said to have been fully investigated in just three working days.

So I have no idea just what I will now do as our kidney cancer second line drug Axitinib is to be included in this exercise and is likely to be withdrawn from the list and become unavailable, but we will not know until the final decision is made.

There is no way I could pay the monthly cost to stay alive without selling up and losing my house, as so many have had to before, but then why should I deprive my children of their inheritance after paying so much over the years in taxation?

Many good people will now be committed to an early death just because they have cancer, which can strike anyone through no fault of their own. I do wonder whether these NHS decision makers already have their own health care scheme to cover such drug costs if ever they should suffer a cancer diagnosis.

Despite promises that the CDF will be in place until 2016, we are now faced with this U-turn.

This is from the website of NHS England: “The main aim of NHS England is to improve the health outcomes for people in England.”

Many patients are now phoning in tears as they feel they have lost all hope. Why can’t we rely on these people to keep their word to taxpayers?

I have written to the PM on behalf of hundreds of families who will be affected and wonder whether he knows of this decision regarding his innovative CDF, as he was of the opinion that doctors should be free to prescribe the most clinically effective drugs to cancer patients – which will again be taken away from them.

I do wonder what our doctors think as they have such a demanding job looking after cancer patients. I do know they welcomed being able to prescribe under the CDF, but of course many will be too wary of speaking out of turn in the present NHS climate of fear.

Come election time, this will become a political battleground once more. Saving the NHS and fully funding it will lead to election victory by simply collecting the right amount of taxes from the super-rich and various well-known international companies, who escape paying full taxes due to clever accounting. In 10 years cancer will affect one in two households.

No wonder we remain one of the worst countries for cancer survival in EU as so much more could be done.

What’s the point of any more research if we can’t even get the drugs?

Interestingly, this huge exercise was put to bed in a record minimum time, so the outcome must have been decided well in advance and can only have been a deliberate rationing exercise, whereas it has taken more than nine months for us to receive a response from an area director at NHS England to our letter about the U-turn over the proposed Gamma Knife Centre in Oxford, which still contains unanswered questions.

So it can be done.

WHAT NEEDS TO BE DONE

HOW do we pay for a sustainable NHS and restore CDF?

  • The first of the major political parties to set out a realistic plan to fix the NHS and prove 10-year sustainability will win the next General Election.
  • Politicians must bite the bullet, upset political friends and fully collect all unpaid taxes. HMRC estimates that it lost £35bn in potential tax revenues in 2011-12.
  • The head of the National Audit Office says HMRC must push to find effective ways to tackle promoters and users of the most aggressive tax avoidance schemes. Although it is difficult to stop tax avoidance as it is not illegal, HMRC needs to demonstrate how it will reduce the 41,000 avoidance cases it already has open. This will be a long process and require litigation.
  • We could consider an appropriate small income tax rise.
  • We need a full review of all managers at every level regarding patient focus/staff needs/requirement/enthusiasm/energy/experience/”can-do” approach/common sense/flexibility

GAMMA KNIFE CENTRE

AS MANY of you know the Oxford gamma knife centre has been an ongoing saga in my column following the last minute U-turn by NHS England, which withdrew the scheme at the last minute.

Well, after many delayed responses from NHS England we finally received one from a certain Felicity Cox, area director (Wessex) NHS England, some nine months from our first email.

It just shows how ordinary patients are regarded by these NHS top people who we employ. She apologised for the delays and I will return to this topic soon as I have more questions to ask.

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