Tuesday, 17 July 2018

Cancer treatment stopped by funding freeze

A WOMAN’S course of cancer treatment was stopped halfway through because of an NHS spending freeze

A WOMAN’S course of cancer treatment was stopped halfway through because of an NHS spending freeze.

Harriet Scorer suffers from a rare form of blood cancer which can cause weight loss, fatigue, anaemia and weakness of the immune system and often reduces life expectancy.

She was diagnosed in 1999 and underwent eight months of chemotherapy before her symptoms went into remission.

But last year the pharmaceutical consultant and former gynaecologist found the cancer had returned.

She was undergoing another course of chemotherapy in preparation for a stem cell transplant when she was told funding for the procedure had been put on hold indefinitely.

Dr Scorer, 56, of St Mark’s Road, Henley, said: “This is a very emotional and uncertain time for me. My feeling is mostly one of utter disbelief.

“As a doctor, I understand there are huge pressures on the NHS but this seems a really poor way of going about things. They’ve put all this money into my treatment so far, so why on earth don’t they just finish the job? You wouldn’t give chemotherapy to a breast cancer patient then not carry out a mastectomy afterwards.”

She suffered a long period of poor health, including a series of chest infections, before she was diagnosed with Waldenström’s macroglobulinaemia.

The disease, which only about 4,000 people in Britain suffer from, can cause the blood to thicken, resulting in shortage of breath and damage to the eyes, and cause swelling of some internal organs.

It is rarely immediately life-threatening but difficult to cure.

After her chemotherapy treatment, Dr Scorer enjoyed more than a decade of good health but discovered the cancer had returned in 2012 after developing a swollen lymph node on her neck. This went away after a bout of chemotherapy but she developed another swelling last year and tests confirmed the cancer was back for the third time.

She didn’t want to undergo further treatment as she felt fine and was worried about the long-term effects of yet more chemotherapy.

However, her doctors at University College Hospital in London, which specialises in the treatment Waldenström’s, said it might be possible to cure the condition with a stem cell transplant.

Under this procedure, patients undergo chemotherapy to kill as much of the cancer as possible before so-called “stem cells” are extracted from their bone marrow.

Once enough have been harvested, the patient undergoes further chemotherapy to suppress their immune system.

The stem cells are then replaced, which hopefully “resets” the bloodstream to normal.

It is not a common treatment because of the heavy toll it takes on the body. By knocking out the immune system, patients are at increased risk of life-threatening infections or bleeding. Nevertheless, Dr Scorer agreed and started the preparatory chemotherapy in May, which caused all her hair to fall out.

Then last month, she was told the funding was on hold because of the financial uncertainty caused by a High Court ruling that NHS England may legally fund pre-exposure prophylaxis, a pill that prevents people from contracting HIV, following a challenge by the National Aids Trust. NHS England plans to appeal.

Dr Scorer said: “I don’t understand how there’s any connection between the pre-exposure prophylaxis issue and my condition.

“That’s the reason they’re giving but it’s completely unethical to stop someone’s treatment when they’ve already started.

“It doesn’t bother me too much that I’ve lost my hair but aggressive chemo has nasty side effects in the long term, including a higher risk of developing secondary malignancies.

“I knew that was the case but nobody in their right mind would have agreed to that if they knew there was a question mark over funding for the actual transplant at the end of it.

“To make such a drastic decision within a week of the High Court ruling is extremely knee-jerk.

“I don’t think anyone’s really thought about the consequences or spoken to experts to understand the situation.

“I want people to be aware that this is happening. I’m not saying for one minute that I disagree with the High Court ruling on pre-exposure prophylaxis. It is NHS England’s reaction to that ruling which has left me in limbo.

“This decision doesn’t even make economic sense — it would cost more to give me extra chemotherapy for a transplant further down the line.

“Wouldn’t it be more logical to get me well as soon as possible so I can be as productive as possible in society?

Dr Scorer, who is still well enough to work, has complained to Henley MP John Howell, who pledged to write to NHS England’s director of specialised commissioning Dr Jonathan Fielden and submit a written question to Health Secretary Jeremy Hunt.

She has also started an online petition to restore treatment for anyone hit by the funding freeze, which has also affected patients with conditions including cystic fibrosis. So far more than 8,000 people have signed it.

Dr Scorer said: “Anyone can see how wrong the situation is. When I’m out shopping and tell people my latest news, they’re absolutely shocked. One person just said, ‘but surely they can’t do that?’

“There’s a bigger debate to be had about what the NHS funds and for who but they just seem to have got it badly wrong in this instance.”

An NHS England spokeswoman said a stem cell transplant was not a routine treatment for Waldenstrom’s macroglobulinaemia, although this was being reassessed and it could be carried out where there were “exceptional clinical grounds.”

She said: “Given that the NHS has never had unlimited funding, it has always been necessary to decide which are the best new treatments to fund each year and that’s what happening here.

“There’s no escaping the fact that if extra money is spent on one particular new drug it won’t be available for other treatments.

“That’s why there’s a sensible, transparent process where doctors and patient representatives weigh the evidence about where best to invest the NHS’s growing budget.

“Should the appeal court rule that NHS England should consider commissioning pre-exposure prophylaxis, it will then inevitably need to be considered alongside other treatments also in line for prioritisation.”

To sign Dr Scorer’s petition, visit petition.parliament.uk/petitions/167441

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