‘If Shaun had got treatment, I believe he would have lived’
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| Ray Johnstone looks at photos of his son, Shaun, who died of a brain tumour. Picture: Matt Clark |
A FATHER who did not know his 16-year-old son was dying of a brain tumour until he was dead has managed to get his life back on track by raising £20,000 in his son's memory.
Nearly ten years after the death of his son, Shaun, Ray Johnstone still firmly believes Shaun would be alive today if his condition had been diagnosed earlier.
The teenager collapsed and died after making seven visits in six months to his GP with symptoms including fits, severe headaches and arm tremors.
After a two-month wait, he was given an appointment for a brain scan, but the date clashed with Shaun's enrolment at Askham Bryan College and he cancelled the appointment because his GP had not made him aware of how serious his condition was.
Ray, who lives in Boroughbridge, said: "My 16-year-old son was going to the doctors with a life-threatening disease that he didn't know anything about because the doctor didn't want to worry him with what he suspected was wrong. It makes me so angry.
"If he had got treatment, I believe he would have lived and I have to live with the fact that he was never given that chance."
At the time, Health Secretary Alan Milburn was quizzed in the House of Commons by Vale of York MP Anne Macintosh, who felt Shaun should have been told what the doctor suspected.
Ray, 52, said: "One morning I went into the bathroom at about seven o'clock and Shaun was lying on the floor. He said my head is killing me.
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| A portrait of Shaun who was 16 when he died |
"I said, right, that's it. No more doctors, we're going to the hospital. At about 11 o'clock he grabbed hold of my hand and his last words were, my head, my head, my head', and then he was gone.
"I'd had no warning or anything. One moment he was there and the next moment he was gone."
Ray, who works as a builder's labourer, had lived alone with Shaun, and his son's sudden death left a gaping hole in his life.
He said: "It was just the two of us and we were very close. When he died I went right off the rails. I didn't leave the flat for two months. I missed him so much."
In 2001, Ray set up a fund in Shaun's name under the Samantha Dickson Brain Tumour Trust (SDBTT) - a charity that funds research into brain tumours. He has now raised more than £20,000.
Ray said: "People don't realise how common brain tumours are. They kill more children than meningitis and leukaemia and there is not enough funding into research."
One of his fundraising exploits was a six-day 150-mile run along the coastline of Aquitaine, in France, during which he carried all his own food and gear.
Iain Wallice, a friend at his running club Ripon Runners, will attempt the same challenge this June - also in Shaun's memory.
If you would like to make a donation or raise money in Shaun's memory, phone Ray on 01423 325394.
Have your say
Do you think Shaun should have been told about his condition?
3:34pm Friday 28th March 2008
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CommentPosted by: Lamplighter on 3:55pm Fri 28 Mar 08
[quote]Do you think Shaun should have been told about his condition?[/quote]
Yes, absolutely. I hate this idea that the seriousness of an illness should be kept from people, usually the very old or young people. A person has a right to know what is happening to their body. They have a right to make their own decisions based on this knowledge and no one (unless in the case of a small child) has the right to deny them this. My heart goes out to Ray. If I was him, I would have sued the doctor and tried to get him struck off for not impressing on Shaun the possible seriousness of his illness.
Do you think Shaun should have been told about his condition?
Yes, absolutely. I hate this idea that the seriousness of an illness should be kept from people, usually the very old or young people. A person has a right to know what is happening to their body. They have a right to make their own decisions based on this knowledge and no one (unless in the case of a small child) has the right to deny them this. My heart goes out to Ray. If I was him, I would have sued the doctor and tried to get him struck off for not impressing on Shaun the possible seriousness of his illness.
Posted by: datty, selby on 6:21pm Fri 28 Mar 08
disgraceful how shaun and his family were treated. should he have been told? of course and it should have been stressed exactly how bad it was .
disgraceful how shaun and his family were treated. should he have been told? of course and it should have been stressed exactly how bad it was .
Posted by: redp, Huntington on 6:41pm Fri 28 Mar 08
That a sixteen year old is left in this condition without informing his parents is absolutely shocking. Let’s hope that the individuals concerned and the NHS in general have learned from this tragedy. Well done to Shauns’ family and friends for their fund raising and of course deepest sympathy for their loss.
That a sixteen year old is left in this condition without informing his parents is absolutely shocking. Let’s hope that the individuals concerned and the NHS in general have learned from this tragedy. Well done to Shauns’ family and friends for their fund raising and of course deepest sympathy for their loss.
Posted by: Mister Sheen, Right round the house on 10:18am Sat 29 Mar 08
[quote]After a two-month wait, he was given an appointment for a brain scan, but the date clashed with Shaun's enrolment at Askham Bryan College and he cancelled the appointment because his GP had not made him aware of how serious his condition was.[/quote]
If he'd been offered something like this then surely his GP shouldn't have needed to - they're hardly routine! I'm sure the college would have been prepared to defer his enrolment if he had told them he had an appointment for a brain scan. As the father of a son, I can appreciate how devastating the loss of a child might be, but he (Shaun) might have been treated in time if he had made his scan appointment.
However two months to wait for the appointment, given the symptoms he had already, is still far too long!
After a two-month wait, he was given an appointment for a brain scan, but the date clashed with Shaun's enrolment at Askham Bryan College and he cancelled the appointment because his GP had not made him aware of how serious his condition was.
If he'd been offered something like this then surely his GP shouldn't have needed to - they're hardly routine! I'm sure the college would have been prepared to defer his enrolment if he had told them he had an appointment for a brain scan. As the father of a son, I can appreciate how devastating the loss of a child might be, but he (Shaun) might have been treated in time if he had made his scan appointment.
However two months to wait for the appointment, given the symptoms he had already, is still far too long!
Posted by: bethbri, York on 7:43pm Sat 29 Mar 08
I knew Shaun and thought he was a lovely polite young man-and we too used the same Dr's surgery at Boroughbridge.I feel really strongly that Shaun was let down by the practise that had grown over the years but in my opinion just didn't listen to the patients-there can never be a time when the patient isn't told about any DR's concerns-infact I remember several incidents where we were not told of vital test results.Our thoughts are with Shauns dad
I knew Shaun and thought he was a lovely polite young man-and we too used the same Dr's surgery at Boroughbridge.I feel really strongly that Shaun was let down by the practise that had grown over the years but in my opinion just didn't listen to the patients-there can never be a time when the patient isn't told about any DR's concerns-infact I remember several incidents where we were not told of vital test results.Our thoughts are with Shauns dad
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