Stephen Fildes/BBCBy Claire Kendall & Richard BiltonBBC NewsThe NHS is failing some parents whose children die unexpectedly, a leading paediatrician has told BBC Panorama.About 50 children’s deaths in the UK every year are termed as “sudden unexplained death in childhood” (SUDC). Little is known about what causes them.Some bereaved families get none of the support they’re entitled to, setting them up for “a lifetime of misery”, says Dr Joanna Garstang. The NHS says it “offers bereaved families a range of support”.Over recent years, awareness has grown among the public and medical community about Sudden Infant Death Syndrome (Sids). Formerly known as “cot death”, SIDS impacts children under one. There is much less awareness about SUDC – the medical term for the unexplained death of a child between the ages of one and 17. Gavin and Jodie’s two-year-old son Addy died unexpectedly in November 2022. “He was just such an easy, happy baby,” says Jodie. The couple – who could not have children of their own – adopted Addy at eight months old.”The most precious thing has been taken from us, and nobody knows why,” says Jodie. BBC Panorama followed the parents over nine months as they searched for answers to why their son died – and whether it could have been prevented.Dacres familyEven after a forensic post-mortem examination, no-one could work out why the little boy went to sleep and never woke up, so his death was categorised as SUDC. When a child dies unexpectedly, a review is held to gather information about what happened. The NHS is required to assign a key worker to help bereaved parents to navigate this process, and provide emotional support. The role of key worker can be taken by a range of practitioners and is often a specialist nurse. However, even though it is a mandatory requirement, a survey carried out by the Association of Child Death Review Professionals (ACDP) found that more than half of NHS areas in England do not have a specialist nurse to visit parents after an unexpected death.”It makes me really angry,” says paediatrician Dr Joanna Garstang, the chair of the ACDP, who runs one of the few teams in England that support parents.”Bereaved families after the sudden death of a child are the most vulnerable people. And if we don’t put in early support… we’re setting these parents up for a lifetime of misery.” If you have been affected by the issues raised in this story, help and support is available via the BBC Action LineGavin and Jodie feel they were left to cope with their grief while also navigating a daunting death review process, with no regular support from a key worker. They say there were a few home visits by a nurse and doctors after Addy died, but then they were left to look for answers on their own. Both parents arranged their own private grief counselling because they were told it would be a six-month wait on the NHS. Since Addy’s death, both Gavin and Jodie have been haunted by the thought that they could have done something to save him.SUDC v SidsThe number of babies who die from Sids has been cut by 80% in the past 30 years, thanks to research and awareness campaigns. There has been far less research into the unexplained deaths of children.The most significant work on SUDC is currently taking place at New York University. The team there has a database of more than 300 SUDC deaths and has recently analysed video monitor footage of five children who died unexpectedly in their sleep. In each of the five cases the children showed signs of seizures. A seizure is a fit that can happen when a child has a fever or illness. Most children are fine after a seizure but the researchers want to work out why a small number of children die.They’re now building a world SUDC database to look for patterns and more evidence.This is the first time a link between SUDC and seizures has been captured on camera. It’s only a small sample, but researchers say the results, part-funded by the charity SUDC, are significant.”I think it’s a huge breakthrough,” says lead researcher Laura Gould, who lost her daughter Maria to SUDC 25 years ago. “Now we’re finding actual clues.”Sudden Child Deaths: The Search for AnswersRichard Bilton investigates sudden unexplained deaths in children and looks at the rese …
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[mwai_chat context=”Let’s have a discussion about this article:nnStephen Fildes/BBCBy Claire Kendall & Richard BiltonBBC NewsThe NHS is failing some parents whose children die unexpectedly, a leading paediatrician has told BBC Panorama.About 50 children’s deaths in the UK every year are termed as “sudden unexplained death in childhood” (SUDC). Little is known about what causes them.Some bereaved families get none of the support they’re entitled to, setting them up for “a lifetime of misery”, says Dr Joanna Garstang. The NHS says it “offers bereaved families a range of support”.Over recent years, awareness has grown among the public and medical community about Sudden Infant Death Syndrome (Sids). Formerly known as “cot death”, SIDS impacts children under one. There is much less awareness about SUDC – the medical term for the unexplained death of a child between the ages of one and 17. Gavin and Jodie’s two-year-old son Addy died unexpectedly in November 2022. “He was just such an easy, happy baby,” says Jodie. The couple – who could not have children of their own – adopted Addy at eight months old.”The most precious thing has been taken from us, and nobody knows why,” says Jodie. BBC Panorama followed the parents over nine months as they searched for answers to why their son died – and whether it could have been prevented.Dacres familyEven after a forensic post-mortem examination, no-one could work out why the little boy went to sleep and never woke up, so his death was categorised as SUDC. When a child dies unexpectedly, a review is held to gather information about what happened. The NHS is required to assign a key worker to help bereaved parents to navigate this process, and provide emotional support. The role of key worker can be taken by a range of practitioners and is often a specialist nurse. However, even though it is a mandatory requirement, a survey carried out by the Association of Child Death Review Professionals (ACDP) found that more than half of NHS areas in England do not have a specialist nurse to visit parents after an unexpected death.”It makes me really angry,” says paediatrician Dr Joanna Garstang, the chair of the ACDP, who runs one of the few teams in England that support parents.”Bereaved families after the sudden death of a child are the most vulnerable people. And if we don’t put in early support… we’re setting these parents up for a lifetime of misery.” If you have been affected by the issues raised in this story, help and support is available via the BBC Action LineGavin and Jodie feel they were left to cope with their grief while also navigating a daunting death review process, with no regular support from a key worker. They say there were a few home visits by a nurse and doctors after Addy died, but then they were left to look for answers on their own. Both parents arranged their own private grief counselling because they were told it would be a six-month wait on the NHS. Since Addy’s death, both Gavin and Jodie have been haunted by the thought that they could have done something to save him.SUDC v SidsThe number of babies who die from Sids has been cut by 80% in the past 30 years, thanks to research and awareness campaigns. There has been far less research into the unexplained deaths of children.The most significant work on SUDC is currently taking place at New York University. The team there has a database of more than 300 SUDC deaths and has recently analysed video monitor footage of five children who died unexpectedly in their sleep. In each of the five cases the children showed signs of seizures. A seizure is a fit that can happen when a child has a fever or illness. Most children are fine after a seizure but the researchers want to work out why a small number of children die.They’re now building a world SUDC database to look for patterns and more evidence.This is the first time a link between SUDC and seizures has been captured on camera. It’s only a small sample, but researchers say the results, part-funded by the charity SUDC, are significant.”I think it’s a huge breakthrough,” says lead researcher Laura Gould, who lost her daughter Maria to SUDC 25 years ago. “Now we’re finding actual clues.”Sudden Child Deaths: The Search for AnswersRichard Bilton investigates sudden unexplained deaths in children and looks at the rese …nnDiscussion:nn” ai_name=”RocketNews AI: ” start_sentence=”Can I tell you more about this article?” text_input_placeholder=”Type ‘Yes'”]
