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Why are there Delays in Diagnosing Children with Cancer?

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    Lucy Norton considers recent reports of delays in diagnosing children and young people with cancer, particularly when there has been parental concern, and why earlier diagnosis can make a difference to the outcome.

    By Lucy Norton

There is a perception that children are “healthy” because they are young and because when they get ill they can often bounce back relatively quickly. Therefore, if a child is going back to the doctor repeatedly either with their own worries or with parental concerns then the possibility of something out of the ordinary course of childhood illness needs to be considered.

It has recently been in the news that concerns by both children and their parents about the possibility of cancer as a diagnosis are not being heard by the medical profession.  Unfortunately, this is not new news.  Whilst it is accepted that cancer in children and young people is relatively rare, symptoms are being dismissed and repeated visits are taken to the GP, Hospital or Health visitor before any investigations into a differential diagnosis, which would include cancer, are carried out.  This can take a disproportionately long time and it is often questioned whether that would be the case if the child could talk for themselves (if they are very young) or if parents were not thought to be over-anxious.

CLIC Sargent research

The charity CLIC Sargent which provides support for young people with cancer also works to raise awareness of childhood cancer.  They have carried out research, (which was reported by the BBC), talking to young people diagnosed with cancer aged 16-24 and also parents of children diagnosed with cancer.  Their results showed that many parents believed their concerns about their child’s health were ignored and the young people also felt that they, and their concerns, were not taken seriously enough.  Both the parents and young people (34% and 53% respectively of those surveyed) felt there was a delay in diagnosis.  Sadly 93% of the young people questioned believed the possibility their diagnosis was delayed also increased their emotional distress.

Why does early diagnosis make a difference?

It is generally accepted that most cancers (but definitely not all cancers) will respond to treatment better the earlier it is found.  On a simplistic basis, the smaller the cancer is (assuming it is a tumour type of cancer) the easier it is to treat and the better the long term outcome.  With some aggressive cancers the window of opportunity for successful treatment may be relatively small.  Once cancer is diagnosed it is graded or staged 1 – 4.  Stage 1 is the smallest and least invasive with Stage 4 being the biggest and most invasive with the possibility that it has metastasised (spread to other areas of the body).  So diagnosing a cancer at the earliest opportunity is important to both treatment and prognosis.

Negligent delay in diagnosing childhood cancer – case example

Not all delays in diagnosis will be negligent, but unfortunately, as medical negligence solicitors, I and my colleagues do see cases of negligent delays in diagnosing children with cancer.  Each case is very different but in some cases, although there will always be treatment required for the cancer itself, it is possible that with earlier diagnosis very severe consequences could have been avoided.  For example, I have previously acted in a case where I represented a little boy who had a spinal tumour (Ewing’s sarcoma).  This would have been undetectable until he started to have symptoms in his legs (where the tumour was starting to crush the spinal cord) but when the symptoms started (pain, tingling, problems urinating) he was taken to A&E 4 times where he and his parents were not believed as his symptoms fluctuated and he was thought to be making it up.  It was only when he lost the feeling in his legs that anyone investigated further but by then he was paralysed.  An internal investigation at the hospital found that the parents concerns and opinions should have been listened to much sooner.

Anecdotally, I also heard of a Mum who whilst cuddling her little boy aged around 3 years old, felt a lump in his abdomen/below his ribs – he was quite a slim child.  She knew this was not right and took him to the GP.  The GP put it down to constipation, although he didn’t really have a history of this and he was prescribed a laxative.  This had no effect on moving the lump and she returned to the GP who advised there was nothing to worry about and to continue with the laxative.  Mum was not convinced and shortly after took her son to hospital and he had an ultrasound scan.  This showed a tumour which turned out to be cancerous.  Fortunately he had successful treatment, he is now a healthy teenager, but it always made me wonder why the GP did not have a greater suspicion of something more sinister than constipation.

Whilst I would in no way advocate turning up to A&E to get a diagnosis, perhaps as parents we have to insist that something is out of the ordinary as we know our children best.  No-one wants to consider their child may have cancer which is why GPs have the ability to consider unemotionally that possibility.  The CLIC Sargent research also surveyed 1,000 GPs who themselves felt more training and more consultation time would be beneficial in diagnosing children with cancer.

Cancer has always been the great leveller in that it does not heed gender, race or religion.  Age is no exception and children need to be heard, and I hope that this research will prompt more training and development in this area.

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