News Blogs Sammy and The Game 8 December 2021 Sammy Alban-Stanley was 13 years old when he died in April 2020. An inquest found he died as a consequence of injuries sustained during an episode of high-risk behaviour related to Prader Willi Syndrome (PWS), with a background of inadequate support from the local authority and mental health services. Today would have been Sammy’s 15th birthday. His mother, Patricia, wrote the following piece which highlights the unwinnable game that families of people with care needs face when trying to access potentially lifesaving support. By Patricia Alban Stanley Sammy loved living. He wanted to learn, to contribute and to belong. He was a role model of politeness and integrity. He worked hard at being healthy and achieved this. His family provided a loving, safe home, and gave wonderful opportunities for a bright future. But Sammy had a disability too. And in Great Britain 2020, having a disability meant he and his mummy must enter “THE GAME”. RULES OF THE GAME PLAYERS: 2 The Authority The Disabled Child’s Parent. OBJECT OF THE GAME: The aim of The Game is for the Disabled Child’s Parent to unlock the Disability Resources and Services so their child can stay alive. GAME RULES There are 3 categories to unlock: Disability Care; Special Educational Needs (SEN); Respite Only after commencement of play may The Parent know they have entered “The Game”. The Authority is always the Bank. The deck of cards must be dealt unevenly: The Authority receives a full hand, access to “The Game” rules, a large paid staff of lawyers and administrators The Parent receives a blind hand, no access to “The Game” rules, no team of helpers The Authority may use the following measures to withdraw or deny life-saving services : A) Intimidation B) Reclassification C) Fabrication D) Delay Tactics E) Bogus Parent Blame-Game F) Use of Own Error G) Fixing of Non-Existent Problems If The Parent displays resourcefulness, integrity or positivity about their child, The Authority may advance in “The Game” and The Parent must return to “GO.” There is no limit to the number of tactics the Authority may use when the Parent is at physical and emotional breaking point. The Game is won by the Authority when The Disabled Child dies or disappears from the system. The Game is won by the Parent when the Disabled Child wins enough Services in order to stay alive. This was Sammy’s GAME: ROUND 1: Disability Care - WIN TO THE AUTHORITY TACTICS used by The Authority: Bogus Parent-Blame Game Reclassification Fixing of Non-Existent Problem Intimidation RESULTS: Removal from Children with Disabilities Team along with all care from 01.12.14 MATERIAL COST: To Parent £25,000+ in legal fees, private carers’ wages, loss of earnings EMOTIONAL COST : To family members : unlimited SAVINGS WIN: To The Authority: a) 1.12.14-26.4.20 (£7,800 annually) b) 26.4.20 ongoing – lifetime saving ROUND 2 : Respite - WIN TO THE AUTHORITY TACTICS used by The Authority Fabrication RESULTS: Claim Sammy had access to respite but no provision granted (due to his high need) EMOTIONAL COST: Unlimited mental health damage to Sammy’s sisters SAVINGS WIN : To the Authority 2014 ongoing – a lifetime of Short Breaks placement savings ROUND 3: Education (SEN) - OVERALL WIN TO THE AUTHORITY TACTICS used by The Authority : Delay Tactics Use of own Error RESULTS: Out of school for 13 months EMOTIONAL COST: Unlimited mental health damage to Sammy MATERIAL COST: To Parent – 13 months loss of earnings; IPSEA - £8000+ for tribunal MATERIAL COST: To The Authority – extra cost for Special Educational provision from 14.3.19 til loss of life: £9,150.68 SAVINGS WIN: To The Authority : 13 months with NO place : £10687 (mainstream rates) OR £20602 (Laleham Gap special school rates). (Annual Figures provided for Tribunal 2019) “The Game” ended on 22 April 2020 when Sammy hit the pavement after jumping from a cliff at the end of our road and death 4 days later in hospital. My attempts to unlock life-saving services failed. Congratulations to The Authority From Sammy’s Mummy. You won.