Our little boy died in his sleep - and the NHS gave us a leaflet

Yet when they most needed support through the darkest of times, it was not there.

As Elliot’s parents Andrea and John left Leeds General Infirmary after the death of their precious little boy, they were only given a leaflet to help them.

“When we left hospital, we didn’t know what to do,” Andrea, from Shadwell, Leeds, said.

“I put into Google ‘my two-year-old boy has just died, what do I do?’

“From that I got ‘you are likely to get divorced, your children are at high risk of being bullied and your friends will leave you because they won’t know what to say’.”

Newly-published research commissioned by the charity they set up has found the shocking lack of support they experienced was not unique.

All the bereaved families involved said the current service did not give them the help they needed when their child died suddenly.

“It did mirror exactly what we experienced. Families talked about the total lack of support and being left on their own,” Andrea said.

Only 16 per cent of professionals thought that child bereavement support in the city was effective, with over half of experts unaware who co-ordinated the services available.

Now Elliot’s Footprint has launched a petition calling on the Government to give families adequate help when faced with the sudden death of a child.

It is hoped 10,000 people will sign, which means the petition will be considered by Parliament.

“This report has proven that the current system is failing bereaved families, who just like us, are left to cope with the sudden loss of their child alone,” said Andrea, 47.

“It has confirmed a very serious need for immediate, intensive and family-centred support for bereaved families.

“We hope that Leeds residents and MPs will come together to sign this important petition. Nothing will ever heal our pain but it brings us some comfort to know that Elliot’s short life might inspire positive change to ensure that in the future, no more families are left alone to cope with unimaginable grief.”

Elliot died in his sleep in March 2013, aged two-and-a-half.

“Elliot was such a happy little soul, he loved life and was full of energy. He gave so much love to us, and his brother and sister, and brought so much joy to all that knew him,” Andrea added.

“Our healthy, happy little boy went from playing and running around in the morning to being taken to hospital in an ambulance in the afternoon. Elliot went to slept that afternoon showing no signs of illness, yet he never woke up.

“Suddenly, we were thrown into a whole new world of intense devastation, filled with immense pain and heartbreak.”

Overwhelmed with grief, Elliot’s parents struggled to find any support at all. After leaving hospital with a hurtfully generic leaflet, they were referred for counselling, which had a six-week waiting list.

When the sessions were available, they were not even with a bereavement specialist.

“The counselling was so general, it was like I’d had a bad day at work,” Andrea said. “After that I felt even worse.”

The family’s GP did not know how to help them and there was no guidance in how to assist older children Emily and Oliver.

Elliot’s dad John added: “Our friends, family and colleagues have got us through this, they’ve held us together during the depths of despair.

“The lack of accessible, professional bereavement support has made the worst possible situation parents can ever endure so much more unbearable. Elliot’s Footprint, along with other Yorkshire charities, are campaigning for better bereavement services to ensure that no other parents have to face the devastation of losing their child alone.”

Elliot’s Footprint aims to improve bereavement services for families affected by the sudden death of a child.

Their work already includes liaising with Leeds Teaching Hospitals NHS Trust to review patient literature and providing training in schools on how to help children who lose a sibling.

The charity’s website is being developed to provide useful and accurate information for families and fundraising is ongoing to employ a specialist bereavement worker to support parents.

They are looking at training more professionals such as hospital and emergency workers, who may have to help those affected by the death of a child, and they are working with various organisations in the hope of creating a more joined-up service.

The petition is being launched this week and will go live on https://petition.parliament.uk/

Background

March 3, 2013 started as a normal Sunday for John and Andrea Kerslake.

The family went to watch their son Oliver, then 11, play football – where youngest son Elliot ran over to give his dad a cuddle when he spotted him.

They then cleared up at their home in Shadwell after a sleepover held by their daughter Emily, then 13, the night before and Elliot entertained the teenagers by doing a dance.

After lunch, the two-year-old – who had been his usual loving and energetic self – went for his afternoon nap.

His mum read him a Fireman Sam story, said she loved him and closed the curtains.

Three hours later, Elliot was discovered with no signs of life. His desperate father John carried out CPR before an ambulance arrived and he was rushed to Leeds General Infirmary.

Medics there were unable to save him and he was pronounced dead.

Shocked and consumed by grief, his family had no explanation for the loss of their previously healthy little boy.

An inquest into his death, held in October 2014, heard that he had probably suffered a seizure brought on by an unexplained virus.

Dr Richard Newton, specialist in child neurology at Manchester Royal Infirmary, said: “This was a well little boy with a cold, essentially.”

He told the hearing that the cause of Elliot’s death was most likely encephalitis – inflammation of the brain – caused by a virus which triggered a seizure as the tot slept. The type of virus could not be determined.

A year after his death, the charity Elliot’s Footprint was launched to help improve support for families like his.

“Elliot’s Footprint is about us trying to have a positive impact in his name,” Andrea told the YEP.