Was that the best they could do?

In a moving first-person piece, Zoe, 31, of Heslington Road, York, describes her anguish and growing frustration at not knowing how to be sure everything that could have been done was done during her mother's three-and-a-half-year fight.

I WAS in Spain when my mum first broke the news to me, the news every family dreads. She had cancer.

I can't even say I was heartbroken because I don't think it sank in. The words washed over me and, although I understood what she was telling me, I had no idea how this would affect me over the next few years.

I flew home as soon as possible because she had been given nine weeks to live unless she had chemotherapy. Chemotherapy brings reality crashing in around you. It is only when you see a loved one go through something as devastating as this that you realise how brave they are.

It is one of the most frightening things I have ever seen. My mum, my beautiful, kind, wouldn't-hurt-a-fly mum, was in a terrible state.

During her time on ward 34 at York Hospital, her face ballooned to the size of a football and her flaming red hair was all around her on her pillow. I don't think she even realised I was there during that first visit. I could only stay five minutes before the sight of my loved mum alarmed me so much that I had to leave.

For three-and-a-half years, my family lived with cancer. We watched in awe as it knocked my mum down and she picked herself up again. Every time I saw her I would listen to the list of things cancer had taken from her. I am not a writer and don't have the words to describe it, but we are all familiar enough with cancer to know the symptoms and side effects.

My mum bravely fought on through another two sessions of chemotherapy and radiotherapy.

During this time we as a family began to scour the internet and newspapers for any other way of fighting against this vicious enemy. As I searched for the latest information on cancer drugs and absorbed media reports about the state of the NHS, I became really worried and paranoid that there were cures my mum couldn't have because we lived in York, or because we weren't among the super rich.

The past six months have been confusing and extremely frustrating and I can't possibly be the only one to feel this way.

When I turned on the news bulletins, they were constantly reporting stories about women having to fight their NHS trust to get breast cancer drugs.

This made me think. I believe in the NHS and doctors. However, hearing about drugs being refused due to the cost or the area where someone lives horrified me. What if, because of my lack of understanding, my mum was missing out on something?

I visited the local cancer care unit in York and discussed this with the waiting patients and relatives. I felt that many others were in the dark like me. Nobody wants to pester the doctors and everyone wants to believe what they say, but there is that niggling feeling of: "what if?".

I wrote to Penny Jones, the head of the local Primary Care Trust, and to our local MP, Hugh Bayley, asking them about the drugs prescribed in York and how they decide how much money to spend.

Although both of these extremely busy people responded to my letter, their replies were standard and not really what I was hoping for.

I needed some answers, but where do you start? I am an everyday working-class 31-year-old. I know nothing about hospital budgets, cancer treatments and trials.

Thanks to the internet, I have a world of information at my fingertips. But there are millions of sites, often quite baffling and difficult to understand, and sometimes contradictory. As I searched the internet for information on cancer drugs, I was even bombarded with advertisements from America offering amazing breakthroughs in treatment - provided I paid.

Most unsettling of all during this time was the fact that the NHS trust that looks after my mum was revealed to be £23 million in debt. Surely this must be making a difference to the quality of my mum's care, I thought.

I contacted The Press and offered to write this article. The Press in turn arranged for me to meet Hugh Bayley and representatives from York Hospital to talk about my concerns.

All I wanted was for them to allay my fears and tell me that if expensive drugs were appropriate for my mum, she would get them no matter what the cost.

Sadly, before those meetings could take place, my mum, my dear, beloved mum, died. She put up a brave fight, but it just got too much. I decided to go ahead with the meetings anyway, and write this article in her memory.

Zoe talks to her MP

I came armed with a list of questions. Hugh Bayley quickly make me feel at ease and seemed genuinely interested in my concerns.

I explained the frustration I had faced during my mum's illness when looking for cancer information, searching countless websites, being confused by medical terminology and misinformation, and tempted by expensive so-called "miracle cures" from the USA.

Mr Bayley agreed it could be difficult. He suggested that official Government health websites, plus websites run by cancer organisations and pharmaceutical companies, should develop clear brand names that the public recognised and knew they could rely on for accurate reliable information.

I asked whether, in the light of budget problems facing the NHS in York, patients could be satisfied that what their doctor said was based on clinical opinion rather than the budget.

Mr Bayley rejected the idea that a doctor would withhold drugs due to cost. The reason for this year's £23 million debt was that doctors had been supplying expensive drugs to more people, he pointed out.

I asked whether it would be possible to standardise cancer treatment, so patients could know they were getting the same standard of treatment wherever they lived.

He explained that because of the different types and stages of cancer, and because people reacted to drugs differently, this would be impossible. Treatments had to be decided on an individual basis by the doctor.

Mr Bayley did discuss the possibility of hospital profiles, where data and statistics regarding every aspect of care and performance at individual hospitals would be available. I thought this was a great idea. Such a system would ensure standards were upheld and would make people feel more in charge of their care.

Finally, I asked Mr Bayley whether he would be happy to send his own mother for treatment in York. He said yes.

Zoe meets the cancer experts

Following the meeting with Mr Bayley, I visited the cancer care unit at York Hospital and met consultant medical oncologist Dr David Jackson and cancer services manager Elaine Jeffers.

Was cost a factor in deciding a patient's treatment, I asked? Not when it comes to the use of approved drugs, was the answer. When treating a patient, he was not thinking about the drug budget, Dr Jackson said, he was thinking about what was best for that patient.

Where it gets more complicated is when a drug has not yet been recommended for use by NICE, the National Institute for Clinical Excellence, which decides which new drugs should and should not be used.

In these circumstances, where a doctor felt there was a new drug that may benefit a particular patient, the Primary Care Trust would decide whether that drug should be used on a patient-by-patient basis, Dr Jackson said.

This is a grey area, and there is potential for health trusts in different areas to take a different line on such new drugs such as herceptin, at least until NICE has ruled on them. In Yorkshire, however, the Yorkshire Cancer Network ensures that hospitals and trusts across the region take much the same line on new drugs, Dr Jackson said.

I raised the idea of hospital profiling that Hugh Bayley had mentioned.

Elaine Jeffers pointed out that the information held in these types of reports is very clinical and would not take into account the quality of care given.

I also realised that it would be a huge responsibility for a patient or family member to decide where to be treated on the basis of such technical information.

Dr Jackson, however, highlighted a three-yearly "peer review" report whereby teams of doctors, nurses and managers assess all aspects of a particular service, such as cancer, at another hospital and then prepare a report on their findings.

The latest report for cancer services at York Hospital will soon be available for the public to view online. I think this is a vital piece of information that people should ask to see.

Finally, I asked Dr Jackson whether he felt York was good at treating cancer. He said for the cancers that the hospital did treat, it was - and that he would feel comfortable about his own family being treated here.

Afterwards....

IT IS only when I started investigating that I realised just how complex is the problem of ensuring standards of treatment for a disease such as cancer.

I still don't know all the answers. But I would recommend that people ask questions. If you read about something that worries you, or about a treatment that you think might help, talk it over with your doctor. They won't mind.

I was worried that when my mum was told there was no more treatment that could help, we were missing something. The truth is the doctors will do everything they can and if you ask they will explain their decision to you.

It is an awful day when you are told there is nothing more that can be done, but I feel satisfied now that the cancer unit in York did its very best for my mum.

Updated: 10:17 Wednesday, May 24, 2006