Thread by @SammyInquest

C calls Patricia Alban Stanley, Sammy's mother

PAS: She swears an oath

C: TY please take a seat. I understand this might be difficult for you, if you think you need a break do let me know and I'm sure your counsel can take over reading if wish to.

C: We do have photographs we can show, do you wish to show now or pause later?

PAS: <cant hear>

C: for court recording your name please

PAS: Patricia Alban Stanley

C: You were Sammy's mother?

PAS: yes

C: I'll leave it to you as to how much or little you can manage to read through your statement

PAS: Thank you. I am Patricia AS, mother of the late Sammy Alban Stanley...making this statement to set out my recollections of Sammy and of my relevant interactions with Sammy

PAS: and the professionals who became involved with him in the years and months before his death. In making this statement I have referred to detailed records I kept all through Sammy’s life.

Sammy is my oldest child. He has three sisters.

PAS: Born in Surrey... moved to Kent in Feb 2018

Sammy was an absolute joy. His loss is felt deeply by all who knew him and in particular by myself, Barry and his three sisters.

PAS: Sammy could have contributed so much to our society. He shouldn’t have been taken from us.

PAS requests that the inquest sees photos and a video of Sammy at his best.

<< Some challenge in showing video, because there's no audio.

I'm not sure what's been shown because i'm on audio link but I've previously seen many gorgeous photos of Sammy, including this one, with his limey soda >>

Coroner suggests have clip with audio at the end of the inquest

PAS: Sammy was incredibly gifted and loved to create things, he was always working on handicraft projects

PAS: Sammy was adept at carpentry. He knew all the different tools, even the more unusual ones. Sammy would make different pieces and I still have all the things he made, a bird nest box and various other intricate boxes

PAS: Our garden turned into a makeshift workshop for Sammy where he could explore all his interests. Sammy liked experimenting with different inventions. He went through a phase of making bags and worked out how to put all the different parts together on his own.

PAS: He loved sewing and knew all the different haberdashery items. He would go from project to project keeping himself busy. These projects were good distractions and he was very talented.

PAS: Sammy was very entrepreneurial too and was very interested in how businesses worked. On one occasion, he made models of musical instruments out of loom bands and sold them for charity. Sammy learned the piano and practised on his own.

PAS: He was constantly very busy with his hands. He was an active boy and you couldn’t just sit him in front of the TV.

Sammy’s essence was purity. He was a gentle and peaceful boy who didn’t possess characteristics like jealousy or manipulation.

PAS: ...huge amount of empathy and compassion and would always comfort those suffering. One thing Sammy loved to do was to wait outside our front door for guests to arrive so he could welcome them in properly, always with a great big smile and an offer of a cup of tea.

PAS: Sammy radiated joy and love to everyone he met and was genuinely interested in other people's lives. He'd often stop and chat with strangers and offer help to anyone in need, help carrying something or with a chore

PAS: Sammy was hard working, tenacious, sensitive and kind. Sometimes he would worry about me when he went with his sisters to stay with his dad. He was incredibly proud of his sisters. They were close and there was no jealously between them. They got on very well together.

PAS: Sammy loved belonging at Laleham Gap where he went to school. He loved Laleham Gap. He had found a place where he fitted in. Staff were very supportive and he had a wonderful peer group, which he'd never had before

PAS: Sammy was in the school play, The Wizard of Oz, one of the proudest moments of my life. Learned his lines meticulously which took ages due to memory issues. He loved the drama club which he attended every Wednesday after school. He also developed garden patch at school.

PAS: Sammy tried incredibly hard in the face of so much adversity to find calming techniques, such as meditation, and worked really hard at these himself.

PAS: Since Sammy’s death, many people reached have out to me talking about their fond memories of Sammy... someone told me that he lightened up his world. Even in his short life, Sammy made a real impact on all those he met.

PAS: Not only do I have to endure his loss but also the loss of his future too. The void and the constant pain are literally unbearable.

PAS: Whilst he had a great many struggles due to his disability fitting into this world, his soul was gentle and resonated the deepest, most resounding love I have ever known.

He made the world a much nicer place

PAS: Sammy was diagnosed with Prader Willi Syndrome in Dec 2006.. only 2000 people in UK diagnosed with PWS. Sammy was one of 25% of them with rarer UPD. More autistic characteristics and higher risk of mental health issues

PAS: people who have PWS with a lower BMI, like Sammy, are at an increased risk of problem behaviour and impulsive behaviours.

PAS: Behavioural episodes got more challenging to deal with as he got older. Didnt happen every day but when they did they were extremely serious and increasingly impossible to manage.

PAS: once Sammy entered an episode it was very difficult and you often couldn't pull him out of it. People who witnessed episodes described it like someone entered his body and sometimes even like Sammy was in a trance

PAS describes episodes and scale devised to communicate about them

PAS: I would always have to be five steps ahead of Sammy all the time which was exhausting... when he was in the midst of an episode this was absolutely and always the only way to keep him safe [in a bear hug]

PAS: If you couldn't get rid of the idea in Sammy's head or distract him he would become slightly bolshy, very different to the content Sammy personality... Level 2.. would keep voice calm and try reassure Sammy and try to resolve issue

PAS: Level 3 Sammy might swear, which was very unusual for him, or kick something. Those who didn't know him could misunderstand this behaviour, which was now incredibly dangerous and could quickly escalate in minutes or seconds to a life threatening incident

PAS describes calling for urgent assistance from passer bys, asking them to call police. She couldn't let go of Sammy to call or he'd be out the door.

PAS describes Sammy sometimes not remembering an episode

PAS: Level 5 was when Sammy would do something to cause himself injury or try to end his life.

PAS describes how many professionals did not understand these episodes or consider them life threatening

PAS: I don’t think they were taken seriously.

PAS: When I would report the episodes and the difficulties in managing them, I got the impression that some of the professionals involved thought Sammy was just being a defiant child, as he did not tick the box of someone with severe learning disabilities

PAS explains she does not refer to Sammy's episodes as challenging behaviour

PAS: doesn’t take into account the difference to his core presentation, the reasons for it and the interwoven connection with his PWS diagnosis.

PAS: I prefer to avoid language like this as I think it conveys the impression that Sammy was in control of his behaviour... when in actual fact they were result of his PWS and autism and not something he was able to control

PAS: I have always, as is clear from records, accepted Sammy's episodes were challenging and put him at risk, this is exactly why I sought help to address episodes and manage them

PAS describes how the family worked hard to help Sammy develop and followed all professional advice. Sammy was her first child so she was able to dedicate herself completely to his development

PAS describes the routines used to manage Sammy's food and how much he valued having rules

Food and weight management were not a main challenge for Sammy, main challenge was behavioural episodes associated with condition

PAS describes how attending hospital appointments disrupted Sammy's routine and lead to anxiety. Sammy was very anxious, especially when involved blood tests as many appointments did

PAS: Sadly sometimes I feel if I had not worked so hard with Sammy and his progress, his needs would have been recognised more, and we may have been able to secure more care and support to keep him safe.

PAS: I required support from services throughout Sammy's life but there have always been difficulties in identifying where the support should come from.. on occasions I have had to fight or appeal or complain to convince professionals Sammy required help and support

PAS describes Sammy starting primary school, making excellent progress for first couple years. Got EHCP in July 2014, support at school increased to 20hrs week.

In Dec 2014 Sammy's direct payments were removed by Hampshire Social Services. Children with Disabilities Team entirely withdrew support, apparently Sammy didn't meet their criteria any more.

PAS describes trying to secure training for herself on safely handling Sammy

Asked for help from CAMHS in Jan 2015. PAS went directly to Dr Ryalls who made referral to CAMHS but told Sammy didn't meet criteria for assistance from CAMHS

In Jan 2017 seen by CAMHS and put on ASD waiting list and trialled on fluoxetine which didn't seem to help

By Oct 2017 still not getting anywhere with receiving support other than medication from CAMHS

In desperation PAS made private appointment with doctor who diagnosed Sammy

By Nov 2017 episodes regularly occurring at school with three staff having to restrain him. School decided could no longer meet Sammy's needs and he was asked to leave

PAS describes looking for new school in area, and in Kent, found Laleham Gap which sounded perfect.

Kent SEN team explained to them to be considered for a place at Laleham Gap the family would have to move to their county, Kent, first.

PAS describes an episode in Jan 2018 where Sammy was out of control, not concerned whatsoever with his own safety.

PAS describes once relocated to Kent on 3 Feb 2018, she was driving Sammy and his sisters to visit their Dad.

Sammy became concerned his phone charger had broken and tried to climb into front of car as she was driving and tried take whole of steering wheel. Emergency stop, tried restrain Sammy in car... two men stopped to help, took all their strength to hold him.

Police came and cordoned off A3 as they believe Sammy was in middle of a psychotic episode.

PAS: There was no stop valve when he got like this. Reported to Kent Social Services later that day and called CAMHS.

PAS: Clearly remember stating this incident was a risk to Sammy's life. Telephoned all professionals involved in Sammy's care including previous GP and paediatricians. Recall speaking to duty worker at CAMHS on 6 Feb 18 and duty social worker on 7th

PAS: Due to A3 incident Kent Social Services became aware of our case very quickly...

all offered by CAMHS was medication as they said this was extent of the help they could provide in Sammy's case

PAS: Support offered to Sammy on bass his diagnoses were Prader Willi Syndrome, autism and anxiety. In any event supported offered by CAMHS was again limited to prescribing medication.

PAS: By this time too many incidents happening to mention them all. Set out most significant ones.

On 6 April 2018 Sammy attempted to jump from a top floor window and had to be saved by an acquaintance doing building work at the house

PAS: On 13 April 2018 was incident in arcades at seafront... Police wanted to help, said was clear he was having an episode, not a criminal case.

On 17 April 2018 Sammy self-harmed again by pushing pins into his nose and taken A&E... required emergency operation

PAS recalls informing Claire Cooper about this and says she understands Kent CC Early Help Hub made referral to Kent Children with Disabilities Team

PAS: Children with Disabilities Team (CWD) refused to help Sammy as they said he did not meet their criteria. I now know the extent of the CWD assessment appears to have been to conduct a google search on Sammy's condition

PAS: At this time Sammy was still not in school and I was finding it incredibly difficult to cope

20 April 2018 major episode at home. I had to bear hug Sammy and suffered approximately 15 bite marks in trying to keep him safe

7 May 2018 incident at beach when PAS describes having to rely on members of the public to keep Sammy safe.

Further incident on 10 May 2018.

Also incidents when with his Dad but PAS wasn't present and cannot provide further details.

PAS describes texting Chloe Berry, who'd become their allocated social worker.

June 2018 PAS attended a Child in Need meeting, the Children with Disabilities Team did not attend. Didn't attend any meetings.

PAS states that Chloe Berry listened and understood the severity and complexity of the situation and was trying to think about way could help...

PAS: I was deeply upset to see from the records that her manager had commented I'd not thought through the move to another county properly.

PAS: Deeply offensive and did not take into account that their own SEN department had told me I must move first before any application to a special school in the county could be made.

PAS recalls Sammy was seen by CAMHS on a few occasions but assessed as having 'low risk of self harm or suicide' and considered family a protective factor.

PAS highlights inaccuracies in CAMHS records

PAS recalls Kent CC removed Sammy's EHCP which meant was difficult to locate a suitable school for him.

320 emails between herself, Kent CC and lawyer IPSEA to try resolve tribunal proceedings

PAS: It was a real battle and KCC maintained until days before the tribunal hearing that Sammy should be at a mainstream school.

PAS: Concluded over a year later on 1 March 2019 with tribunal concluding Sammy required a EHCP and he should attend school to deal with his needs. Laleham Gap finally identified as suitable school.

PAS describes further episodes

PAS: For almost the entire period before Laleham Gap was finally agreed, KCC’s Education Team maintained that Sammy could go to mainstream school despite no mainstream school being willing to accept him, concerns were raised by various professionals

PAS: On 3 September 2018 a further very serious incident took place where Sammy tried to drown himself in the sea

PAS describes how exhausting it was trying to hold Sammy back from the sea when two male swimmers had helped PAS get Sammy out the sea.

PAS: On 17 Sept 2018 I was still desperate for support and was working on application for funding from charity for mindfulness therapy... asked Chloe for letter of support

PAS reads from text: he presents more as suicidal these days than aggressive. His behaviour when heightened is very risky, to himself mainly.

First allocated social worker left in late Sept 2018

PAS: October 2018 was further incident due to problem with his meal and police had to attend

PAS describes youth club Sammy was due to attend between Sept 2018 and March 2019

PAS recalls incident at youth club. Youth club manager horrified to hear Sammy was out of school for almost year. Promised to help in any way he could and wrote letter of support expressing his concern.

5 Nov 2018 was incident at bonfire night fireworks where five members of security team had to restrain Sammy to stop him hurting himself

PAS reads from email from the member of the security team, and she informed social worker day after happened

14 Nov 2018 PAS submitted complaint that Sammy didn't meet criteria for Children with Disabilities Team. MP also wrote letter in support on 20 Nov, PAS doesn't recall ever receiving a response.

PAS: I do not understand why Kent CC thought our case could be downgraded when we were clearly at crisis point.

PAS describes battling with KCC about tribunal process, as well as managing Sammy at home by herself

PAS: On 17 Nov 2018 two days after social services stepped down Sammy's case a further life threatening incident took place

PAS describes her and her sister in law restraining Sammy jumping from the pier after he ran out of restaurant

<< Discussion about timetable and breaking for lunch >>

C: My understanding is witnesses may be observing proceedings downstairs in other court room so she might have a warning; I'll ask my usher to have a conversation with her. Let's pause there.

Court is adjourned; back at 13:45

<< Coroner requests people to wear masks as they're walking around the building to protect people as best they can >>

PAS: On 11 Jan 2019 Sammy was seen by Prof Dattani and I remember voicing all my concerns about the situation to him.

On 14 Jan Sammy self-harmed again I think due to his frustration of being out of school for so long. Had attend A&E to remove a nail from his nose and he required an operation few days later to remove lego he'd inserted into his ears

PAS spoke to police and police officer suggested he would make a child protection referral

On 28 Feb 2019 Sammy had undergo life threatening emergency operation overnight after he had driven nails up into his head out of frustration

Around 12 March 2019 Sammy's case was stepped down again "I couldn't believe this was happening"

On 14 March 2019 Sammy started at Laleham Gap which he loved. Laleham was a great school for Sammy, they dealt with his behavioural episodes and seemed to really understand him

PAS: Staff were good at recognising the signs Sammy was going to have an episode, meant he didnt have many episodes at school compared to previous setting

PAS: School kept Sammy's support under review, by end of his time there he had 1:1 support and 3-6 members of staff present to provide positive handling as a team during episode

PAS listed further episodes

20 March 2019 had call police who restrained Sammy in handcuffs

As not getting any support from social services, PAS started employing a carer to help at home and continue with therapies

PAS reads from Police report "Mother receives no help and funds all of the therapy sessions by herself to cope with the conditions, she stated she is getting worried about what is going to happen when he gets older and stronger"

PAS: Further episode 31 March 2019 - PAS reads from police report again

New social worker end March Sarah McCormack. PAS emailed full list of incidents and details and folder of daily care notes from carer

PAS: Despite this I felt that the management at social services were not taking the problems and my repeated pleas for support seriously. By this stage, I had tried to access short breaks for respite and they were refused.

PAS: On 19 April 2019 another very serious incident which led to Sammy being detained in police custody.

PAS describes calling police after Sammy threatened to stab himself after a delay in going bike riding

PAS: Police held Sammy overnight until the episode passed "I understand the police referred this and many other of the incidents when they attended to social services"

PAS: 14 June 2019 I telephoned Dr Baker to try explain without Sammy being in room, how dangerous his episodes were becoming

PAS: June 2019 the panel atKent CC refused the request made by the social worker for direct payments. I was pleading for more support, at this time priority was ensure limited PA support which PAS was privately funding, would be continued.

PAS: we needed more than direct payments, we needed a service and disability support to be put in place too but I thought that direct payments would go some way towards this. In her referral to the panel, Sarah McCormack set out how high-risk Sammy was

PAS: I recall that she told me that she thought our situation was incredibly dangerous and was furious that the panel had turned down the request for further support.

PAS: She told me that the panel had said to her something like 'when will this ever end?' referring to the repeated requests I had made for help. I will never forget that as this was the reaction I got when asking for help to keep my son safe.

PAS: I recall Sarah McCormack was deeply concerned. I thought she was trying to do everything she could and she was very tenacious.

Children with Disabilities Team never met myself or Sammy

PAS: On 21 June 2019 Niall Johnson left his job at CAMHS, I emailed him to thank him for all he'd done for Sammy saying he'd been a rock

Around time plan to try Sammy on sertraline; PAS concerns because similar drug to fluoxetine which Sammy had poor reaction on

PAS: 28 June 2019 further episode at home requiring police assistance

Phoned Margate Police Station to request meeting in July 2019 because they were having to attend so much

PAS: 4 July 2019 GP write to social services asking for support and respite as I was at breaking point

PAS details emails she sent to new social worker, Siobhan McAree/Acree

PAS: 8 October 2019 sent email "I am desperate for help from Disability Team"

Desperately trying to liaise between various agencies to try make each of them understand the severity of the situation.

pAS: I was concerned nobody was talking to each other so they were looking at incidents in isolation.

16 October 2019 further email about significant concern

PAS: 26 October 2019 another incident "Police arrived and took over.... eventually handcuffed him as he was putting himself in danger. Eventually he calmed down and removed handcuffs. Sammy started crying and begging them for help. I comforted him.

PAS: This broke my heart. Sammy was just broken, He was pleading for help with tears streaming down his face. He knew his behaviour during these episodes was wrong. He was terrified of how he felt during these episodes.

PAS: Police attempted to get hold of social services but could only get answerphone of duty social work team.

4 November 2019 Sammy swallowed a needle at school and was hospitalised for emergency endoscopy

8 November 2019 Children in Need meeting at school.

PAS: I vividly recall Jonathan Deslandes, Sammy's SENCO, telling me "we will have a serious case review on our hands". He told me there was no way anyone could manage Sammy's episodes alone.

PAS: 10 December 2019 Sammy swallowed another needle at school and needed emergency treatment again. Child in Need meeting took place next day and concerns about Sammy's safety were expressed at that meeting.

PAS recounts talking to school about how stressful Christmas had been for Sammy

17 Jan 2019 Children in Need meeting due take place at school but later cancelled

PAS: Autumn 2019 finally received confirmation KCC had approved funding for a PA to work for 10 hours per week. Started end January 2020.

PAS details further episodes and her attempts to access support

PAS: During Jan 2020 a Family Group Conference was being organised to see what support my family and friends could provide.

PAS emailed Chair of meeting ahead of it, explaining difficulties. Said needed wrap around carer around school times, 6-8am and 4-7pm to enable Sammy to stay at home

PAS: Whilst I agreed to go through this Family Group Conference process, by this stage I would try anything, I was very concerned that it was just wasting time while Sammy’s life was in danger.

PAS: I needed professional help and I didn’t understand why social services kept trying to push it back onto me and my family. It seemed to me like a delaying tactic or distraction so they didn’t need to provide us with any support.

PAS: I got a number of family members and friends to attend, all of whom explained that professional support was required.

PAS: We did not get as far as discussing the particular details of the care that was required but everyone there agreed that he needed care from paid, trained professionals.

PAS: We wanted to give Sammy a wonderful quality of life and an ability to enjoy family life within his community, keeping him safe at home, especially as he was in an ideal school but this could only be done with more help.

PAS: Family Group Conference took place on 3 March 2020

All the friends and family members who attended on my behalf stated strongly that I needed specialist help in the home and the idea that Sammy’s young sisters could care for him was dangerous.

PAS: We also refuted the safety rating of 6 out of 10 that had been awarded. To me this appeared absurd given this history of dangerous behaviour. I was very concerned that they were trying to push care back on to me and it was delaying getting the proper process started

PAS: On 31 January 2020, Sammy was seen by Professor Dattani and Dr Baker. I expressed my considerable concern about Sammy’s safety. I said that the incidents we were currently experiencing may result in Sammy’s death.

PAS: There was no question of me mincing my words. I was so concerned, I clearly expressed the dangers.

Prof Dattani wrote to social services after this meeting stating Sammy's condition was life threatening and I could not manage Sammy's episodes alone, needed more help at home

PAS: On 21 February 2020 CAMS meeting took place, I attended with Sammy... we discussed residential care at this meeting as I informed John Hollands and Dr Qazi that things were getting so urgent that I may have to consider care, as there was no engagement from the CWD team

PAS: and it was impossible to manage by myself at times. As Sammy was at the meeting it was difficult to talk freely and so I had to mouth the word c-a-r-e whilst spelling it out so Sammy wouldn’t get upset.

PAS: Naturally I wanted Sammy to stay at home with me if at all possible, but things were getting so unmanageable without adequate help so I wanted to consider all options.

PAS: Sammy picked up on what we were speaking about and became very upset. He started to cry and said something like 'please just give my mummy what she needs. I want to stay with my mummy'. This was so devastating to hear.

PAS: John [CPN] suggested a CETR

"first time I'd heard about a CETR, It sounded exactly what we needed and so I was surprised it had not been mentioned before. For the first time, I felt that there was a way through this and I felt a sense of relief"

PAS recounts was also suggested she go on course designed to help parents with children with autism experiencing challenging behaviour - had been on multiple parenting courses and was happy to try anything

PAS: Again I felt that this response totally downplayed the severity of the situation and would not address these very serious life-threatening episodes.

PAS: I feel that this is another example of a one size fits all approach and dangerously puts the ball back in the court of the parent when what he needed was bespoke, specialist one to one therapy, based on a proper understanding of his individual PWS and autism.

Coroner checks PAS is happy to continue and doesn't need a break - she wants to continue

PAS: No-one at CAMHS had ever witnessed an episode and did not appear to understand how serious they were.

PAS: I was happy to have any support in terms of handling the episodes and agreed to attend all courses or meetings that were offered to me

PAS: I am aware Sammy’s case was referred to Professor Santosh (?) an expert in rare diseases in South London and Maudsley at the beginning of March. I wondered why this referral hadn’t happened before.

PAS: I strongly feel that if Sammy had been under the right team, he might have received the specialist support he needed.

PAS: I now know from disclosed emails that the Children with Disabilities team were aware of the expertise at the Maudsley, but I don’t understand why the referral was not made until things had reached this point

PAS: Siobhan McAree visited again on 16 March 2020 but again I didn’t see the point of this visit as nothing new was suggested. It seemed like a tick box exercise to see Sammy

PAS: As everyone was now talking about the CETR as the answer, KCC appeared to think that CAMHS would deal with this going forward and I didn’t get the impression they were willing to offer any additional support... felt like a tick box visit

PAS describes impact of Covid19

When national lockdown started Sammy continued to attend school until he received shielding letter when Laleham Gap were unable to have him at school.

PAS told Siobhan (social worker) that she was really worried about the danger to Sammy of being at home and in particular about the dangers of the cliff.

PAS: The reason I was worried about it is because the cliff edge is at the end of my road and during episodes he was running off towards anything dangerous, unless he was stopped.

PAS: Spoke to Siobhan 26 March 2020 after she emailed asking why Sammy was not at school. I was surprised she didn't know this. Called back and spoke for 17 minutes.

PAS: I remember saying I needed some form of emergency help due to the lockdown and that I had had to save his life three times recently, that police were regularly attending and cliff was a risk.

PAS: Siobhan said she 'couldn’t promise anything' but would speak to the panel. No additional support was put in place

Further incident 25 March 2020 where police had to attend on two occasions

Describes how Sammy was screaming he wanted to kill himself.

PAS: The new PA help was working, but it wasn’t enough hours to keep Sammy safe, as I had explained over and over to social services. Sammy calmed down after about 50 minutes and accepted the situation that there would only be one outing per day.

PAS: Sammy chatted with the police and the police suggested, despite the lock down, he could see his Dad at the weekend as usual, which made him pleased. Sammy relaxed and did his woodwork later happily with Steve, who had arrived during this incident

PAS recalls Dr Hanney calling to introduce herself on 25 March 2020

PAS: 26 March 2020 Dr Hanney emailed me attaching safety advice sheet and saying that a management plan would be developed in the next few months.

PAS: 7 April 2020 had call police as Sammy was attacking me. Sammy became anxious and agitated and lost control after he developed a rash from a hand gel which caused him to become distressed.

PAS: By this time Sammy’s episodes were increasing in frequency as he was not at school and struggling to cope with the lockdown without extra support.

PAS describes suffering a slipped disc during this episode and was prescribed painkillers by GP

PAS: Children in Need Meeting on 17 April 2020

"At this meeting I expressed my significant concern for Sammy’s safety... I told everyone I was unable to keep Sammy Safe alone"

PAS: There was talk of the CETR going ahead and I felt everyone present felt was essential to keep Sammy safe, although there was no plan about what I should do in the meantime.

PAS: I'm unsure why it was taking so long for the CETR process to start or why it hadn’t been considered at an earlier date.

PAS: I didn’t feel that this meeting reflected a true multi-agency meeting as nobody from Kent CC had specific or extensive experience of children with disabilities, the Children with Disabilities team were not involved and CAMHS did not attend.

PAS: Ahead of this meeting I had detailed conversation with Jonathan Deslandes about residential care as I wanted to make sure I had fully explored the pros and cons of it. I wanted to get as much input from those in the know who knew Sammy and witnessed his episodes.

PAS: Naturally I desperately wanted to care for Sammy at home but I had realised that I couldn’t cope with the limited care that was available, although no residential options were offered to me

PAS: it was documented that there was agreement that residential care was not appropriate for Sammy at this time but nobody had put forward any residential care options to me

PAS: further incident took place at home on 20 April 2020 when police had to be called... Sammy's carer Steve was around and helped me hold Sammy.. having an additional pair of hands at home meant I could just about manage the episodes

PAS: When the police arrived the episode had passed, Sammy had calmed down and was talking to them about dogs.

On 21 April 2020 Nick was staying with us and was helping Sammy to set up a bank account. Sammy was waiting for bank cards to arrive and caused him some anxiety

PAS: Morning of 22 April 2020 Sammy came into my room really early and dragged me out of bed to the floor by my hair very distressed by something... looking for letter about bank account.

PAS: Nick found letters from Natwest in bin, gave them to Sammy, all thought this was what he was looking for. I went to recover, in my mind I thought it had resolved. I last saw Sammy sitting calmly at the table with the piece of paper.

PAS: I was lying down recovering and didn't hear him leave the house. Next thing I knew was Police in house telling me what happened.

After Sammy's death realised letters were actually addressed to Patricia, so not ones Sammy was looking for and believe instigated second episode

PAS: Restraining him as I often had to do was a question of saving his life. It was so much more than Sammy pulling my hair or biting me as is often recorded. The records do not convey the severity of the incidents and that it was a question of taking action to save Sammy’s life

PAS: I felt there was constant push back from CAMHS and KCC and I was made to feel like I was making unreasonable requests.

PAS: As I had worked so hard to make Sammy able in many ways, his need for support was often overlooked. It felt like I was being punished for giving Sammy as fulfilling a life as possible.

PAS: It took 3 to 6 trained people to restrain him at school but I was expected to do this on my own. The only proposal to keep Sammy safe was for me to call the police after an episode had begun.

PAS: My battle between 2014 and 2020 to get more help has driven me mad with frustration and exhaustion as I fought, and it did feel like a fight, against social services’ and the Trust’s procedures, bureaucracy, and inertia.

PAS: I do not understand why so much of the paperwork generated over the year...did not translate into support that we so desperately needed.

PAS: Although I did all I could to cope with Sammy’s episodes, we were in crisis with very limited support. We were operating at crisis point continually and things continued to escalate after Sammy was unable to attend school during the national lockdown.

PAS: Every incident that Sammy had was life threatening...

I felt that in the view of the authorities Sammy became a child with behavioural issues rather than a person with a disability who needed care and support to help him live his life in the community.

PAS: I wanted everyone to work together to keep Sammy safe. Instead I kept being told he didn’t meet the eligibility criteria for support.

I was told by CAMHS that the local authority CWD team should support Sammy and told by the local authority that CAMHS should support Sammy.

PAS: I don’t understand why no short-term plans were put in place whilst a long-term plan was finalised. It was becoming harder and harder for me physically to save Sammy’s life each time he had an episode.

PAS: Every episode would leave me shaking, traumatised and injured at best and at worst unable to walk. I feel that the situation was downplayed to justify the fact I was not given any practical support.

PAS: I believe that the situation was also made worse by the time it took for, and the battles that were fought with Kent County Council to put Sammy into the specialist school that he needed.

PAS: It took a full year of fighting with Kent County Council, with a complete removal by them of his EHCP at one stage, and a tribunal to get this to happen.

I can’t describe how relentless and arduous this process was.

PAS: At every point I was turned away by the state bodies who had no understanding of Sammy’s needs, made no effort to get any understanding, portrayed me as an overwrought and fussy mother and never accepted when I repeatedly said that Sammy’s life was at risk.

PAS: I believe this failure to see Sammy as a disabled child tragically led to his death

Sammy was a beautiful soul, he was an absolute pleasure.

PAS: He fell through the cracks in the system because he was deemed not disabled enough to be awarded a proper level of care, yet was too disabled for me and my young daughters to manage at home on my own.

PAS: I knew Sammy better than anyone and could pre-empt episodes as much as it was possible to do so

PAS: I did all I could to give him a wonderful life and maximise his opportunities but I feel badly let down by the authorities who should have helped us to seek specialist support to ensure Sammy continued to live a fulfilling and happy life.

Coroner: Thank you, that's an incredibly hard thing to do <I think - hard to hear> because you've given evidence I will ask for completeness if there are any questions, I'd be surprised if there were but I'll ask.

There aren't.

Short break.