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Mother really does know best when it comes to sick children

Have you had this nightmare?

You are running from danger. You cry out for help and no sound emerges. For too many mothers this is what happens when their child is seriously ill. They know something is dreadfully wrong. They need help but when they turn to the experts they are dismissed.

They're treated like neurotic fools. They're sidelined, ignored and sent packing with their sick child. Too late they are proved to have been correct. Why?

It is 20 years since one of Scotland's most senior medics told me that when he was presented with a sick child he asked the mother what she thought was wrong. He said 99% of the time she was correct.

Research carried out at Oxford University in 2010 established the same thing. The Lancet told doctors they should trust parents' instincts; their concerns should be taken seriously.

We call it a sixth sense; a mother's instinct. It's more tangible than that. Parents know their children intimately. They can spot tiny but significant changes in temperature, complexion and behaviour. They know when it's something out of the ordinary.

Mothers treat most ailments at home without recourse to the doctor. They rarely flag up something serious but when they do, they really shouldn't be dismissed the way they too often are. It begs the question: do parents need a new contract with the medical profession?

I would include the case of Sally Roberts. She is the mother who appeared in court last week after absconding with her seven-year-old son, Neon, who was due to have radiotherapy on his brain.

Neon had a tumour successfully removed in a Bristol hospital. It is the hospital's policy to follow up with radiotherapy and chemotherapy. They planned to do this with Neon even though he seemed to be recovering well.

But when his mother was talking to a doctor in the hospital he referred to the radiotherapy as frying the brain. It was an unfortunate turn of phrase but it expressed a certain truth. Side effects from the treatment can include infertility, reduced IQ, stunted growth and possibly strokes.

An expert, speaking in court last week, said he had known children treated this way to attend mainstream school and even university. Implicit in his statement is the understanding that many don't. The judge charged with deciding whether or not Neon will receive the treatment called the situation, "every parent's nightmare".

Ms Roberts wanted to hold back the radiotherapy unless or until there were signs of the cancer returning. She had discovered that not every hospital insists on it. She wanted in the meantime to try more holistic therapies.

She strikes me as being entirely rational. But she couldn't get her message through. She couldn't be heard. There was an established procedure and she was just a mother. There was a method for all but she wanted her son to be treated as an individual. She was presented as an hysteric. Police raided the house to which she had taken Neon. They separated mother and son and she ended up in court.

She is said to be risking Neon's survival but in her mind she is standing between her son and the prospect of disability. The radiotherapy will improve his chances of survival by about 12% at a huge cost. She wants to be certain he needs it.

I would have done what she did. I think most mothers would. Of course the medical professionals are the experts and the rest of us are groping in the dark.

But there is a principle here. Parents have the best interests of their child at heart. Although doctors are expert in the illness, parents are experts in the child. Surely there should be collaborative communication.

It matters because parents are wounded too. They are fragile. They need sympathy and understanding. They also need respect. They really should not be silenced, sidelined or dismissed – because too often they have been proved correct.

Paula Stevenson was ignored when she tried to alert nurses in Birmingham Children's Hospital that her baby daughter Hayley was in trouble following heart surgery. For days her pleas went unheeded. Hayley died. After an internal review the hospital said the hierarchy among medics deterred junior staff from referring Hayley back to the paediatric intensive care unit from the post-operative ward.

In this, as in all cases, there are no guarantees that a more sensitive system, with the sick child at the heart of it, would have saved Hayley's life. But it might have. Either way it would have left her mother and her family with the reassurance that everything that could have been done was done. Instead we seem slow to learn.

Over a two-week period Debbie Flowers took her 10-year-old daughter to the GP three times and to A&E five times. On each occasion she had to withstand the unspoken attitude that she was a paranoid, over-anxious mother. Finally Bethany was admitted for observation. She died the following day.

Her mother started an internet petition, Mother Knows Best. It demands that doctors listen to parents' concerns.

It's not as if the UK is leading Europe in the excellence of children's health services. Far from it. In February 2011 a report in the British Medical Journal noted: "The care provided by UK children's health services is inferior in many regards to that in other European countries. Although there are many examples of good practice, health services too often provide poor outcomes that are seemingly planned around the needs of organisations rather than those of children, young people and families."

It all matters, particularly now. We are in an ongoing period of austerity which means the numbers of children living in poverty will increase. And we know there will be a commensurate increase in childhood illnesses.

It strikes me that this is an excellent time for the medical profession to adopt a fresh approach by welcoming the input of concerned parents. By accepting the truth that sometimes mother really does know best.

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