
Families in limbo over 'lifeline' adoption support fund
Hundreds of families with adopted children in Surrey are waiting to hear whether funding for their government-provided therapy services will continue. The Department for Education (DfE) has yet to say whether funding for the Adoption and Special Guardianship Support Fund will continue after 31 March.Karen Garner from the Sensory Smart Child Therapies clinic in Walton-on-Thames said: "Our concern is for the hundreds of children that we support who have been adopted after experiencing trauma, loss and neglect."The DfE said it was "committed to ensuring all children are able to achieve and thrive" and that adoptive parents "will be at the heart" of its plans.
Ms Garner said the children they support "are making great progress with therapeutic relationships and specialist interventions".But she said only 18 families "out of hundreds" have had their funding confirmed and there are 400 families across all clinics "in limbo".
'It will have a huge impact'
Families say the services are a lifeline and the uncertainty is causing them anxiety.A mother who visits the clinic in Walton-on-Thames, we are calling Sarah said: "It helps with my daughter's emotions and anxiety."Not to have it will have a huge impact on her, she looks forward to it every week and thrives when she leaves." Another parent we are calling Kate said: "If my family can't access the funding after March it will affect my daughter's confidence."Another parent said the fund provided a vital lifeline for her family and without the professional help they receive they would be lost."We are more aware of what our child needs, which means we can also advocate for them at school," she said.
Every child is entitled to apply for a fund of up to £5,000 per year for specialist intervention under the scheme.In a statement, the DfE said its planer were "to rebalance the system to provide earlier support and greater stability for children".The government has promised to set out more details on the fund as soon as possible.
Alison Woodhead from Adoption UK told the BBC that at least 82% of families they surveyed said the fund had a significant impact on their children and the wider family.She said it "changes lives for hundreds of complicated children who have been removed from their birth families and it is an essential part of their development". "We are receiving an increasing numbers of families calling our helpline asking for clarity, and sadly we can't offer it to them."
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Scottish Sun
18 hours ago
- Scottish Sun
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Telegraph
2 days ago
- Telegraph
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ITV News
4 days ago
- ITV News
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Carole McNeil now lives in Bournemouth. Her daughter Sarah was born in 1989 and is now aged 35. She has mobility problems, speech difficulties and learning difficulties. She also had to have an operation for scoliosis when she was 14. Carole McNeil Carole had been on sodium valproate since the age of two. She was concerned about taking the medication while she was pregnant. "I asked if there was any side effects and was told no, you'll be fine," she said. She says she was initially told by doctors that Sarah was double jointed - but later on a five year battle showed she had sodium valproate syndrome. She's angry that information about the drug wasn't shared with patients earlier. "Why, why didn't they tell us?" "The government that knew in 1973 that there was the problem with this drug and Sarah was born in 1989, 16 years after. "It's not right. It's not right." ITV Meridian's Social Affairs correspondent Christine Alsford has been speaking to Penny Johnson about her experience. An estimated 20,000 children have been affected by sodium valproate damage - which is twice the number in the Thalidomide scandal, a drug that also caused birth defects. Women took the epilepsy medication to control their seizures but say they weren't given the opportunity to switch to alternatives and had no idea the drug increased the risk of birth defects and developmental delays. Penny Johnson's son Alan was born ten years after Sarah in 1999. He has mobility problems and autism. "There was no warnings on the box," said Penny. "Nothing said that I shouldn't take the medication before trying for a baby. There was nothing." Penny Johnson She says the government needs to take urgent action to help families. "I feel very alone and abandoned," she said. "I feel forgotten. I need things put in place for my son. I'm 56 years old." Penny from Aylesbury in Buckinghamshire, believes that three miscarriages that she suffered, are also a result of the medication. One happened at 16 weeks. She added she was denied the chance to make choices. "I feel that I could have had the medication changed so easily because my epilepsy was not severe. In fact, I don't know medication now. I haven't been on medication since 2002." ITV Meridian's Social Affairs correspondent Christine Alsford has been speaking to Jo Gamblin about her experience. Parents including Jo Gamblin from Fareham in Hampshire say they've been let down by the system. "They've known for years the dangers of it," said Jo. " And to just leave women to carry on having children. I just don't understand how they can even sleep at night." Jo's son Lewis is aged 19 and was born with signs of sodium valproate syndrome and has now been diagnosed with ADHD and autism and registered as disabled. "What I really want to get across is what has happened to our children," said Jo. "They need help. "This wasn't his fault. It's not my fault. And what they seem to be forgetting is that we were given the medication to help us in the first place because we've got an illness that is life threatening and now we've got more stress. And stress is one of the biggest triggers for epilepsy." Jo Gamblin Well over a year ago a major report that set out how a redress scheme for sodium valproate should work was published. Written by the Patient Safety Commissioner, Professor Henrietta Hughes, it said there was a "clear case for redress based on the systematic healthcare and regulatory failures". Sixteen months on, there has been no response from the government, which she describes as "disappointing". "The responsibility of all government should be to keep their citizens safe and in this situation I believe patients and families have been let down by a system that hasn't focused on safety," she said. "The disjointed and dismissive nature of the health system is what led to those patients being harmed." The Department for Health and Social Care said they would provide an update "at the earliest opportunity". A spokesperson said: "We are fully focused on how best to support patients and prevent future harm. "This is a complex area of work and the government is carefully considering the Patient Safety Commissioner's recommendations in full." Medical regulator the MHRA said: "Since 1974 product information for healthcare professionals has always included a warning about the risks of valproate use during pregnancy. "In the 70s and 80s, few medicines were supplied with any printed information for patients. "The first patient information leaflet for valproate, approved in 1989, advised patients to contact their doctor if pregnant or planning a pregnancy so risks could be discussed." Watch an ITV Meridian vodcast where Social Affairs Correspondent Christine Alsford speaks at length to Carole McNeil and Jo Gamblin. In 2018 new warnings were added to boxes of sodium valproate warning that the drug shouldn't be taken by pregnant women. There is also now a Pregnancy Prevention Programme in place for women under the age of 55. Sanofi, manufacturers of one of the main brands of sodium valproate called Epilim, told us: "We have always worked closely with the MHRA and fully met all our legal and regulatory obligations in relation to valproate which is an essential medicine used to treat a serious and potentially life-threatening condition. "The use of valproate in pregnancy is an incredibly complex issue that involves many different parties including government, regulators, doctors and other prescribers, pharmacists, manufacturers, patients and other people affected. "All partners in the healthcare system, including health authorities, healthcare professionals and pharmaceutical companies, have a role to play in providing information on risks and benefits of medicine to all patients who take them, consistent with scientific and medical knowledge."