Lancashire councillor's bid to raise awareness of brain tumour symptoms in children after losing her teenage son

When Anna Hindle’s son, Tim, was sent for an MRI scan in 2018, she had a mother’s instinct that something was seriously wrong.

Tuesday, 2nd November 2021, 8:17 am
Updated Tuesday, 2nd November 2021, 2:28 pm

Shortly after turning 13 in May that year, her usually active boy had begun to suffer from severe headaches, which saw him lurch from being his normal fun-loving self one day to being unable to get out of bed the next.

The debilitating pain he was experiencing was initially diagnosed as teenage migraine, but the medication he was prescribed made no impression on either the headaches or the increasingly frequent episodes of vomiting that accompanied them.

“Just before he started being violently sick, he had been to Lake Windermere and we thought maybe he had picked up something in the water. There was also a nasty bug going round, so I just put it down to that,” Anna recalls.

County Cllr Anna Hindle with memories of her late son, Tim (image: Dan Martino)

“At the time, I’d just been diagnosed with breast cancer and we even wondered if he was just worried and it was coming out in that way. So we got him counselling in case it was to do with anxiety.

“But as it progressed [through] June and July, these headaches just wiped him out.

“[Looking back], it’s really weird, because that summer there were some specific things that he wanted to do. He wanted to go fishing - so my Dad took him and he caught a big fish; he wanted to go to the plays in the park in Lancaster and he loved that; and he wanted to go whale-watching on the Isle of Mull.

“During that trip, I’d rest him one day and then we’d do something the day after - how he felt would dictate what he could do.

Tim Hindle began suffering from debilitating headaches soon after his 13th birthday

“When we went whale-watching, Tim was laughing because people were sea sick and he was saying: ‘Mum, look, it’s other people being sick, not me’.

“And would you believe it, there was just one really good sighting [that day] - this whale basically came right up to Tim and jumped in front of him.”

Prior to the holiday, Tim had been seen by a paediatrician and had some preliminary tests after being referred by his GP when there had been no improvement in his condition. Anna had also taken her son to A&E on a couple of occasions since he first fell ill, where a migraine diagnosis was made once again.

Initially, the paediatrician seemed similarly persuaded that that was the cause of the youngster’s problems, but as she and Tim were returning from Mull, Anna received a message from the Royal Preston asking her to bring him in for a scan - prompting parental fears that would sadly soon be realised.

Just moments after undergoing the test, Tim collapsed and his family learned that, devastatingly, Anna’s intuition had been well-placed. The scan had uncovered an aggressive grade-four tumour in his brain stem.

“It was in the worst place and it was the worst possible type,” Anna explains.

She remembers medics being amazed by the fact that Tim had managed to enjoy any of the adventures in which had immersed himself in the weeks leading up to his diagnosis - which even included snowboarding.

“One of them did say something that was a little off-putting: ‘At least you've had those good memories’. And it was the way she used [the word] ‘had’ - she obviously knew, but didn't say anything, and then she made arrangements and he was rushed to the Royal Manchester Children's Hospital.”

It was there that the tumour was drained, leading Tim to declare his intention to once again defy medical expectations, telling Anna: ‘Mum, I’m better now, I can go home’.

Having even managed to start the new school year in September, Tim - who had mild autism - saw his blue-light ambulance trip to Manchester as another tale with which he could regale his friends - his spirit clearly undimmed during the journey to a hospital where he would undergo two gruelling seven-hour operations.

“He said: ‘Mum, this is going to be such a good story to tell everyone when I go back to school on Monday’,” Anna remembers.

“He turned everything [in such a way as] to make you feel better, so that you weren't worried.”

Tragically, however, just 11 days after his diagnosis, Tim passed away.

Anna, who was elected to Lancashire County Council as the Labour representative for the Preston East division earlier this year, recently relayed the painful details of her loss to her new colleagues during a full council meeting at County Hall.

She was appealing for their support in helping to raise awareness of the symptoms of brain tumours in children and teenagers, telling fellow councillors of the “awful moment when a team of [medical] professionals...take you into a room and ask for your consent to turn off the life support machine, because there's nothing more they can do”.

Speaking to the Post, Anna stressed that, in Tim’s case, earlier diagnosis would not have led to a better outcome. However, she said her experience had made her realise the importance of the speedy identification of tumours if other families were to be spared the sadness that had been visited upon hers.

“The earlier you find it, the better the prognosis and the better the success rate. Because it is relatively rare in some respects, there is a lot of ignorance.

“When we were in hospital, a few members of staff said they hear [of late diagnosis] so often.”

A notice of motion presented by Anna won the unanimous support of county councillors and will see the authority help to distribute diagnosis cards produced by the “HeadSmart” campaign, which list the symptoms of brain tumours that parents should look out for. County Hall has committed to working with the NHS to have the cards placed in GP surgeries, schools and other settings delivering children’s services.

John-Paul Kilday, the paediatric neuro-oncology consultant who led Tim’s care at the Royal Manchester Children’s Hospital, says that the HeadSmart initiative has helped to reduce diagnosis time from an average of three to four months back in 2007 to around six weeks today - by raising awareness both in parents and carers, but also GPs, who are likely to be the first port of a call for a child with symptoms.

“Brain tumours are, thankfully, uncommon and many of the symptoms and signs of a tumour can be, in many cases, attributed to far more common causes - hence why there is [a] delay as other diagnoses are considered first, as they are more frequently observed in practice.

“However, if a parent is concerned, or if the symptoms persist or more symptoms develop, the campaign tries to empower them to seek help. Many symptoms are indeed explained by other causes, but others are not and often mean a look for a tumour should be performed – the aim is to give [parents] the confidence to follow their instincts.

“A GP will probably see only one case in their entire career - [so] it’s also about empowering them and giving them confidence to ring us up through increased awareness. It’s understandable things get misdiagnosed if you only see one case in your entire practice,” Mr Kilday explains.

Meanwhile, Anna says she was overwhelmed by the “genuine” support of her fellow councillors for her motion.

“I think [this card] has the potential, if someone picks it up, to save their child’s life - which is pretty amazing.”

The pain of Tim’s loss is, of course, still keenly felt by the family he left behind, including his elder brother, James. But, three years on, Anna now looks back with pride on the young man that Tim, a keen animal-lover, was becoming when his life was cut so tragically short.

“I would say he was quirky - for example, with his friends, you might see him walking down the street doing a funny dance. But then he had another side to him which was probably more private and he’d be quite serious.

“He wasn't embarrassed to show his opinions - so if all the kids in class thought something, but he thought something else, then he wouldn't be embarrassed to say it. He took people as they were and accepted them - and he was loyal to his friends.

“And he did have this streak in him of caring for people. One Christmas he got some money and said he wanted to give it to charity and he’d also often go into the bakery and then [come out] and say to a homeless person, ‘Do you like this?’ and offer it to them.

“That was the thing that was particularly upsetting - he had struggled so much beforehand with his autism and he was just coming out of his shell.”

‘I WISH I’D KNOWN ABOUT THE SYMPTOMS’

County Cllr Hindle was widely praised by members from across the political divide at County Hall for her bravery in telling the story of losing her son, Tim, to a brain tumour - in the hope that it would save the lives of other children.

Labour opposition group leader Azhar Ali revealed that his son had also previously had the same diagnosis - and he said that his subsequent successful treatment was the result of a “sheer fluke”.

“We went through school thinking he had other problems...and going through tests and finding nothing. And it was only [in] going to a routine appointment where the normal consultant wasn’t there and there was locum [that we received a diagnosis].

“We went through his symptoms and she said ‘Have you had a brain scan?’ and we said ‘No’ And after having had two years of [being told] it’s migraine, we ended up going through an MRI scan and within two or three days...they were able to diagnose it and deal with it.

“If this [HeadSmart symptom] card had been widely available, he might have been diagnosed earlier and would not have had to go through the serious operation [that he did] and the after effects of it,” County Cllr Ali said.

In a statement after the meeting, David Jenkinson, interim CEO at The Brain Tumour Charity, expressed his gratitude to County Cllr Hindle for her work – and for the response of Lancashire County Council.

“Brain tumours remain the leading cause of childhood cancer deaths in the UK. Our HeadSmart campaign to raise awareness about the signs and symptoms of children’s brain tumours has two aims: to help save lives and lower the chance of long-term disabilities by bringing down diagnosis times.

“A key part of that is to support parents, carers and healthcare professionals to be aware of the possible warning signs, which can easily be mistaken for other problems that typically affect children – and we are delighted to be able to count on the support of the Council to extend this work across Lancashire.

“Thanks to the support of campaigners like Anna and our partners across the country, HeadSmart has helped to halve the average diagnosis time for children with brain tumours in the UK from 13 weeks to 6.5 weeks. But we need to sustain that progress and further reduce the average diagnosis time to four weeks or less in line with NHS targets.

“While brain tumours are relatively rare in children and younger people, if you’re worried and your child’s symptom persists or they have more than one symptom, we’d encourage you to speak to your doctor.”

BRAIN TUMOURS IN YOUNG PEOPLE: WHAT TO WATCH OUT FOR

The HeadSmart campaign splits the symptoms and signs in young people that could be linked to a brain tumour according to their age – babies, children and adolescents.

BABIES

Persistent/recurrent vomiting

Balance/co-ordination/walking problems

Abnormal eye movements or suspected loss of vision

Behaviour change, particularly lethargy

Fits or seizures (not with a fever)

Abnormal head position such as wry neck, head tilt or stiff neck

Increasing head circumference

CHILDREN

Persistent/recurrent headache

Balance/co-ordination/walking problems

Persistent/recurrent vomiting

Abnormal eye movements

Blurred or double vision/loss of vision

Behaviour change

Fits or seizures

Abnormal head position such as wry neck, head tilt or stiff neck

TEENAGERS

Persistent/recurrent vomiting

Persistent/recurrent headache

Abnormal eye movements

Blurred or double vision/loss of vision

Balance/co-ordination/walking problems

Behaviour change

Fits or seizures

Delayed or arrested puberty

Additional symptoms to consider (all ages):

Reduced consciousness

Diabetes insipidus (excessive drinking)

Abnormal growth