Happy Birthday Sammy
Today is Sammy’s 14th birthday but he is not here to celebrate it. I’ve been speaking with his mum, Patricia, and this morning I spoke to his sisters and promised that I would share about Sammy so more people know of him. They fear he’ll be forgotten.
Sammy was born on Friday 8 December 2006. His mum fondly remembers her beautiful first born baby.
‘I could see these bright little eyes… he was a baby with so much potential, I really worked with him, and he worked so hard himself. I felt like no, we’re not going to have this, we’ll do this together, you and I against the world’.
Sammy was diagnosed with Prader-Willi syndrome at about 5 weeks old, and later in life it became clear he was also autistic.
Sammy attended a special nursery school, before moving to a mainstream primary. Sammy did reasonably well academically but struggled with his anxiety and towards the end of primary school he was starting to react emotionally. His behaviour became more volatile, as Patricia explains people with Prader-Willi have an irregular hypothalamus, which produces hormones and controls regulation.
Sammy himself was aware his anxiety was spiralling, Patricia recalls him saying ‘I’m going to go mummy, I’m going to go’. Unfortunately people who didn’t understand Prader-Willi were prone to misunderstand Sammy. They took his articulating his awareness that he was getting emotional, as a threat and somehow an indication of manipulative behaviour, but what he was actually doing was trying to communicate how he felt and give a warning.
There’s a video on the NHS Choices website that discusses Prader-Willi, it features Daisy, who is 12, her mum Sharon, and a psychiatrist Prof Tony Holland. You can watch it here if you’d like to learn more but I just want to focus on something Daisy says. She says:
‘It can make me very emotional at times. I just feel really frustrated, and it’s not really like I’m actually upset. It’s just like PWS is pulling me out and I’m trying to stay right back here [she indicates being pulled from one place to another with her body] and with myself stretching, I’m getting closer and closer towards a more stressful situation’.
‘She gets very emotional and very upset very easily. And sometimes that can be because although Daisy’s an articulate child with good understanding, she might get confused by a social situation and she needs something explaining to her fully until she’s clear in her head before she can move on. And sometimes that can take quite a long time’.
Patricia can relate. She described how Sammy would be totally out of character when he had what she calls an ‘episode’. She refers to the fact that:
‘Sammy couldn’t understand the illogicality of the world, it would send him apoplectic’.
It seemed completely natural to Patricia and Sammy’s family that he would try to create order. What others perceived as controlling behaviour, Patricia understood as a coping mechanism
‘Of course he was being controlling, because he couldn’t control his mind, he was trying to create order’.
It’s clear that as soon as Patricia came across Prader-Willi Syndrome she upskilled herself in it. Her knowledge is expert, she read and researched, throughout our conversation she mentions experts around the globe she’d connected with for advice and ideas. Sammy’s family worked with his needs, and built the structure that allowed him to have a full and happy life, into their family life.
One example was that Sammy knew his lunch had five healthy components, which he’d choose depending on how the mood took him. Likewise his evening meal was like clockwork, the same component parts, which helped him with his eating (people with Prader-Willi often suffer from obesity because the hypothalamus (the bit of the brain that controls regulation) doesn’t tell them that they’re no longer hungry), so this structure around eating really worked for Sammy. His favourite evening meal was sausage and mash, followed by yoghurt and banana. He loved fruit and as a treat would have mango sorbet.
One of his sisters told me how much Sammy loved a lime and soda, but his preference was for it to be ‘very limey’. He knew which his favourite waitresses were at the Victorian Pavilion in Ramsgate, because they knew how to make it the way he liked it. His sisters would have lime and soda too, or a hot chocolate. They’d also head on to the beach afterwards occasionally. Patricia remembers how Sammy was always the first in the sea, donning a wetsuit and jumping in any time from April onwards.
Sammy developed a love of hot air balloons from an early age and he also loved all things inflatable, bouncy castles and slides. He owned an inflatable canoe which he took great care of, carefully packing it away when not in use, and Sammy was very particular about who could borrow it. Sammy’s sisters also remembered trips out to Dreamland, a vintage funfair in Ramsgate. They’d enjoy the Scenic Railway and Sammy’s favourite was a ride that would go in circles, stop at the top and drop down all of a sudden. Sammy had no fear, he loved it.
Sammy clearly had an acute eye for those that paid attention to detail, and he was a discerning customer. He had one favourite fish and chip shop who could do it ‘properly’, that is make his meal just the way he liked it, which if you’re interested is ‘fish, no chips, mushy peas, no sweetie, a pickled egg, all in one bag’. His mum and sisters are visiting them later today.
Sammy was the eldest child, with three younger sisters and his parents separated when he was about five years old. Sammy and the girls lived with their mum but he saw his dad every weekend and loved spending time with him. Sammy’s most treasured possession was a DeWalt Impact Driver, a gift from his dad.
Which brings me on to telling you about Sammy’s hobbies and skills. Sammy was incredibly creative. He kept himself busy, whether it was making bird houses, or crafting boxes, he was a skilled wood worker and spent hours making things.
Steve was a personal assistant supporting Sammy for a few hours a week. He shared:
‘Sammy’s pride, joy and efforts went mainly into his woodwork and sewing. These were his most industrious and inventive activities. Boxes, pouches and bags, in all shapes and sizes were duly produced. His sawing was straight, accurate and a marvel to witness. Sammy always held the wood by hand. He was never keen to clamp the wood. I could not persuade him to do otherwise’.
Steve and Sammy spent many of their hours working together. He recalls:
‘Sammy would open the door with a beaming, wide, smile.
I’ve got an idea! Sammy was never short of these; and would convey his latest plans with an infectious enthusiasm.
From making balloon sculptures on the beach to building a home for the homeless and a travelling Punch and Judy show, complete with a custom kitted out Van, containing the paraphernalia for such a production: These were amongst many original ideas.
Each day, when I arrived at his front door, Sammy would greet me with his delightful and sparkling personality. “I’ve got a good idea” (they were always put to me in a charmingly persuasive manner). How could I ever doubt him?
The practicalities of turning such ideas into reality, never entered Sammy’s mind: for in his world everything was possible’.
In 2018 Patricia, Sammy and his sisters moved to Kent to live. Patricia recalls that Kent Social Services wouldn’t offer Sammy a place at a special school before they moved and told her they’d have to move down first. Patricia researched extensively, and then they upped sticks and moved their lives from Hampshire to Kent, to an area with a number of good special schools that she felt would suit Sammy.
‘They just chastise you as a mother don’t they…. I moved everything, we move home and then we were accused by social services of moving before we had secured a school place’.
What Patricia describes next is nothing short of a real life horror story. Please don’t continue reading unless you’re in a good and strong place today. I fear many readers of this blog will relate to what follows, and the giveaway was at the start, Sammy is not with us to celebrate his birthday.
Shortly after they’d moved home, Patricia was taking the children to their music lessons when Sammy experienced an episode as Patricia was driving at 60mph. I’ll spare you the details suffice to say that Patricia had to do an emergency stop, she describes lorries whizzing past as she sought to keep Sammy in the car and prevent him getting out onto the road. Patricia is full of praise for passers-by who stopped and helped, three young lads, and the Police who took them to hospital.
This is a common feature throughout our conversations. Patricia is so quick to acknowledge those who helped, who listened, who took the time to get to know Sammy. Sammy was clearly a charming young man who had no difficulty making friends with anyone he met. However Patricia would often require help from strangers and passers-by because Sammy’s episodes could happen at any time, and were often life threatening. Patricia doesn’t hesitate to sing the praises of many who helped to keep Sammy safe throughout his life.
Returning to the driving incident Patricia describes her utter desperation, she remembers it like an out of body experience. The one consolation was that she thought at least now they would now surely receive some help. They got an appointment with CAMHS (Child and Adolescent Mental Health):
‘I thought everything was going to change now, but nothing seemed to change’.
Patricia describes Sammy being passed from pillar to post, with no-one being prepared to take responsibility for helping them. CAMHS gave medication but nothing else. Kent Social Services wouldn’t help, with one social worker saying he should be under the Children with Disabilities Team, then that team saying he did not meet some of their criteria, for example, because he could dress. Critically Sammy was still without a school place and the uncertainty and stress was having a huge impact on all the family.
Sammy’s anxiety grew. Patricia found a doctor in America who was prepared to do some mindfulness work with Sammy pro bono. She secured a small grant to pay for a local psychology graduate to help teach Sammy mindfulness techniques and social stories. He enjoyed that and practised hard.
Sammy had been out of school for ten months when a pro bono lawyer took on their case through IPSEA. Patricia described moving home, bringing up four children, trying to run a business and the very last thing she could cope with was the EHCP (Education, Health and Care Plan) Tribunal paperwork, so she was very grateful for the support provided by IPSEA and particularly one of their lawyers.
After 13 months out of school Sammy eventually got into Laleham Gap, a special school that had been their first choice all those months ago. Laleham Gap were wonderful, Sammy loved it there and they loved Sammy. Over a year out of school had taken its toll on Sammy, his anxiety was at times unbearable and his episodes of anxiety and self harm had increased. Laleham Gap were keen to work with Sammy to reduce his episodes and were also clear that Patricia needed more help at home.
In January 2020 Kent put in place 10hrs of support a week for Sammy, out of school hours.
February 2020 saw a CAMHS meeting with a new psychiatrist and a CPN. Patricia describes being pleased with their suggestions, they talked about CETRs (Care and Education Treatment Reviews) and Patricia recalls feeling like that this could help.
Patricia was aware she needed more support. Sammy was now her size and she couldn’t hold him like she used to as he had an episode. She describes begging services for support. The response was that they would do a Family Group Conference to see if the family could help.
Patricia was uncomfortable, she felt this was a delaying tactic and another hoop to jump through. Patricia had letters from consultants, she had reports from the Police and two letters from her GP saying they needed more support and it was life threatening. What on earth could a Family Group Conference add?
Still, desperate for help, she rang all her family and friends to ask them to participate. The end result, entirely predictably, was that her local friends said they’d help when they could but many were working and had no training, her family cared but weren’t local and couldn’t help.
The meeting discussed, and reported, in black and white that Patricia required urgent additional professional support at home, due to Sammy’s history of self-harm and suicidal tendencies. Patricia recalls someone using the words that ‘Sammy was falling through the gaps in the care system’. They went through the process and the council still refused to revise their risk rating in their March 2020 assessment.
Then coronavirus happened and the first lockdown hit. Sammy was deemed physically vulnerable due to his Prader-Willi so he couldn’t go into school. Patricia checked with two doctors, both of whom felt he should stay home. The school agreed as they had children from NHS and keyworkers in too.
From 26 March Sammy was back at home full time, a rough estimate was that he’d be awake for about 90 hours a week and no additional cover or support was provided. Their family was left with 10 hours a week support.
Despite Patricia’s cry for help, all that happened was A Child in Need meeting almost a month later in the middle of April.
Less than a week later Patricia’s worse fear had been realised when the Police came to the house to say Sammy had been found after a fall from the cliffs. Sammy had suffered a traumatic brain injury and died four days later.
An inquest into Sammy’s death has been opened and at a pre-inquest review hearing last month the coroner ruled that Article 2 applied, a full inquest hearing is due to happen next year.
Today Sammy’s family have a schedule of activities to remember him. When I spoke to his mum and this morning they outlined how they were planning on spending the day, doing all the things Sammy enjoyed and remembering him.
This evening they’re having a family and friends video call to enjoy a cake for Sammy, made from sugar free jelly with fruit all over. If you’d like to light a candle at 7pm tonight for Sammy they’d love that.
I’ll keep you updated on Sammy’s inquest as it develops.