Peter was born in 1954 in London, the youngest of four children following Richard, Karen and Mick. His older brother, Mick described to me how his Mum was stressed out when she found out Peter had Downs Syndrome, but his Dad smothered him with love and always said he’s going to be alright. Peter’s mother quickly came around and his sister, Karen, described a very happy family life and childhood.
When Peter was less than a year old he had double pneumonia, and there was a possibility that he might not survive it. It was a really bad case, but Peter surprised everyone and pulled through. A doctor told his Dad that they should move him out of London and take him somewhere near the seaside to live.
The whole family moved to Leigh on Sea when Peter was about 2. It would be his home for the next 56 years.
His brother, Mick, described how back when Peter was born children with Down Syndrome tended to be hidden away. Peter wasn’t hidden away, he was very much loved and a central part of his family but he was still almost 7 before his Mum found a school for him.
Karen recalls that it wasn’t really a school, it came under health:
“He never really had an education, but he enjoyed his life, he left school at 16 and went to a Training Centre in Southend”.
“He did his bits of schooling and adult training centres, until he decided enough was enough and he didn’t want to go no more. He was quite stubborn when he wanted to be and he’d rather stay at home with Karen”.
Mick is full of praise for how Karen cared for their brother over the years. He describes how Peter wouldn’t really have a conversation with anyone, he’d tend to just mumble an answer to any questions he was asked:
“All through his life he was like that, Karen was very, very close to him, and looked after him like a brother…. I can’t fault Karen in any way in the way she’s looked after him. She knew his body language, how to interpret what was wrong with him and so on. I knew him quite a bit, but she knew everything. The disgusting part was when they took him away from Karen”.
I’ll come to that in a moment, but first let me tell you a little more about Peter. Karen remembers how Peter had Downs Syndrome and autistic tendencies:
“He was brought up a gentleman by our Dad. So he wasn’t violent or nasty or anything. He was a lovely quiet fella. He didn’t like change”.
“We had a happy family life. Our Mum did everything for us. Our Dad looked after us. Because Peter never had an education, our Dad used to sit there and try and teach him to add up and a bit of English and things.
The TV was on and Peter couldn’t concentrate, he never did learn to read and write. He couldn’t really make his needs known. He wouldn’t talk to strangers. The most words he’d say was yes and no. He couldn’t have a conversation.
I always knew if there was something wrong with him, except in the home I didn’t see much of him”.
Peter, Karen and their Mum lived in Leigh on Sea in the family home together.
Karen shares that their Mum looked after Peter until she got dementia and Alzheimer’s. In the end Karen had to get Peter some help and she took over his full time care.
“He always needed help with personal care, showering, washing, shaving, washing his hair, that sort of thing”.
Eventually caring for her Mum and Peter became too much and as her dementia worsened, their Mum moved into a home in the 1990s. In 2012 Karen and Peter moved up to Norfolk to be nearer to their brother, Mick. They remained at home living together. Peter didn’t like going into homes for respite or anything, they’d tried it when they lived in Southend and he hated it.
Karen described how her and Peter had a great life together.
“He wouldn’t go out with a lot of carers; he didn’t like them. I used to take him up the pub, or when he was at the training centre he was very good at darts and they used to play with another training centre and whoever won got a trophy.
He liked darts.
He liked his tele, he liked the soaps, bit of comedy. Don’t think he understood lots of it but he watched it.
He had a fear of the dark, didn’t like the dark, was very frightened of it. The room he had at home was in the dark”.
You can hear a resigned sorrow in Karen’s voice when she mentions the home. I will come on to that in a moment.
Mick remembered how, despite Peter not using speech, he knew what was going on.
“They [care home staff] complained he wouldn’t sit up at the table, he’d sit on his bed and watch TV. He had all his magazines out with what was coming on the TV, he couldn’t read or write but he knew by pictures what was going on.
When we were kids my older brother had a record collection. Peter would hold the records in his hand, if you said to him ‘give me my old man’s a dustman’ he knew which one you wanted, he’d go thru them all and check from the covers and find you the one you wanted.
He was very contented with everything; to say Karen mistreated him is a total lie”.
Karen remembers how in Summer 2015 she was worried that there was something wrong with Peter. He wasn’t eating or drinking normally. Mick when recounting this episode adds more context than Karen, in relation to her persistence. He remembers:
“Peter was struggling, having a problem, Karen called the doctor out who didn’t really want to come out. He gave him antibiotics. Karen didn’t agree, and he didn’t get any better, so she persisted. She called 999 and got the ambulance people out, they found he had sausage stuck in his throat”
Karen’s ‘long story short version’ skipped out any note of her tenacity or skill in advocating for Peter. She recalled how he’d choked on a piece of hotdog sausage, was admitted to the West Suffolk Hospital and the Speech and Language Therapists assessed him, diagnosing dysphagia and put him on a pureed soft diet.
Peter had no teeth, and Karen followed Peter’s dysphagia plan without any problems while he lived with her.
For 63 years it sounds to me like Peter had a great life; a much loved youngest brother, a beloved son, and a friend to many. He enjoyed an active social life and loved his holidays.
Mick and Karen both share how involved Karen was in the local Southend Mencap when they lived there. She was on their committee and heavily involved in organising trips out for people.
“I used to organise days out back down in Southend, with Southend Mencap. For 30 years I organised days out for people with learning disabilities and their carers. He used to like going on a lot of those”.
Asked about holidays, Karen brightens as she remembers:
“We went abroad a lot when our Mum was alright… we went to Austria for Christmas. We had to go by coach because Peter had never flown. Our Mum was always worried that if he saw the stairs he wouldn’t get on a plane <she chuckles deeply>.
We went to Southern Ireland, Jersey, IOW, Scotland, we went to lots of places. We went abroad a lot, a lot around England.
I was his best friend and he was my best friend; I was choked when they first took him, it made me ill… it probably made him ill as well”.
So, why was Peter taken away from his family? Karen and Mick are hoping that the inquest will explore that. It clearly pains them both.
Mick is adamant that there was a case built against Karen by Norfolk Social Services:
“What happened, my angle on it, you have to read between lines. My sister, if there’s any fault, she’s a heavy smoker. In the time running up to this situation, she had an agency come in to Peter. Karen complained about the carers, they’d just come sit with Peter. If he wet himself they wouldn’t even change him. They came in so Karen could go shopping, if she wasn’t going she’d cancel them and they didn’t like it.
The carers kept complaining Karen was smoking and they said Peter should be put in a home. They were in touch with Norfolk Social Services, I believe this social worker made her mind up she was going to take Peter away then. She came to see Karen, two weeks later she sent someone else from Social Services around. She wrote a report, it was helpful what she could do for Karen, she said they’d bring someone in in mornings, help get Peter up.
Then they bought in someone else as well a day later, then on Monday they bought someone else in, a Speech and Language Therapist, he turned up unannounced. In his report he turned around and said ‘the room smelt of smoke, two ashtrays, one with 13 dog ends, couldn’t see the other because Karen took it away and hid it quite quickly’ something like that. What was his brief before he went in there? To do a damaging report on Karen?
All of them did a damaging report on Karen. On Monday or Tuesday the social worker turned up with a nurse to say they would take Peter away”.
Mick seemed very laid back throughout our phonecall, but you can tell he’s infuriated by these events. There’s a sadness to Karen as she recounts her version of events:
“They took him away from his home with me in 2017.
He was crying his eyes out, there was no meeting, no documents, nothing. They just took him away.
Anyway, they took him only for a couple of weeks of respite, that’s what they said. Turned out they put a Court of Protection order out on him, so me and my brother Mick, we did have another brother Ricky, he died last year. It said we couldn’t take Peter out of the home, so he was stuck in there for six months”.
I suspect that it is partly the way that this was handled that irks Mick. He remembers how Peter didn’t want to go:
“Karen phoned me, she was hysterical. At the time they both had heavy colds, she was told they had to take Peter in for respite, 10 days to 2 weeks. I always said afterwards they had a hidden agenda to take him away permanently.
Peter was refusing to go, he was crying. It took them 3 hours to get him off his bed and take him away and they took him away anyway”.
It’s also what he perceives as the hypocrisy and deceit of the situation. Mick continues:
“Up until this point I did not know the law, I didn’t know we had any say in it. Went to see lawyer, on Friday phoned them up, they phoned me back and said ‘I believe I’m getting the run around here’. So she said it was late in the day, you go up there tomorrow and if they don’t have any paperwork you’re entitled to take him away.
We went in on the Saturday asked if there was a piece of paper. The lady in charge of the home said she didn’t know, said she wasn’t certain. She said was something here, orders saying Peter had been taken dated on the Friday.
Me not knowing this and not knowing the law, didn’t realise that they hadn’t taken the paperwork to the court, they didn’t go to court until Monday and got it stamped.
So, they told Karen a lie on the Monday when she visited and deceived me on the Friday. The paperwork wasn’t processed until the following Monday.
We were so naïve, we had no evidence, they had all these reports saying Karen couldn’t look after him. The [Court of Protection] judge said ‘you’ve got to listen to the experts’ and agreed that he could stay for another 3 months”.
Mick shares more of his theory that a case as being built against Karen, and Peter’s family.
“The Mental Capacity Act I think it is, you read the first ten pages, it’s all about family involvement, you must include family and everything, people who know someone best…. Peter’s family were disregarded totally, they didn’t even know that me and my older brother existed…
I feel like when he went into the home, it was a conspiracy from the home, the people who were running it wanted to keep him. They seemed to be in league with the social worker as well.
Every time Karen went up there they kept making notes about her and what she’d supposedly done to Peter, forcing him to have a drink for example. One time he had glitter on his face and Karen was brushing it off and they wrote down that she was poking him in his face”.
Mick is certain that the Court of Protection judge would have allowed Peter to return to Karen’s care if the case had concluded before he died. A number of assessments were ordered by the court:
“They came around to see Karen and judge whether she had the ability to look after Peter. She passed them all with flying colours. Of course she did.
You always knew Peter wanted to come home. Every time I went to see him in the home he was asleep in the daytime… turns out he was up all night looking for Karen.
Peter was diabetic, he had dysphagia, they also said he had dementia. There’s no way any stranger could ever say had that, I couldn’t tell if he had it or not and I know him inside out. He wouldn’t answer them so they diagnosed him with dementia before they took him away.
They made their mind up that they were going to take him away, that’s what they did. They said they took him for respite for 7 to 10 days, it’s a total lie.
We had final court case for late July or August 2018. I’m 100% certain they’d have let him go back with Karen on that time, but he died in the meantime.
I believe he would still be with us today if they’d not taken him away from Karen”.
When I ask Karen about Peter’s time in the home, Oaks and Woodcroft owned by The Priory Group, she is wistful:
“I didn’t think much of the home anyway; Peter looked unkempt. His hair was long, it didn’t look like he’d been washed for a long time. His clothes he went in with, he had different clothes on when we visited, different trousers and tops. They didn’t fit him. I don’t know what happened to his clothes”.
“My brother Mick asked them to get a post mortem done on Peter when he died and we found out there was a large piece of carrot stuck down his throat.
Peter wouldn’t eat carrots, he was really fussy with his veg, he’d only eat white veg.
So the home was to blame for his death really, he was meant to be on a pureed diet so how did he come to be eating carrots?
He hated carrots”.
Peter lived happily and healthily in the care of his family for 63 years. He was in the care of the State for less than six months before he died.
Peter’s inquest starts on Monday. His family hope that their questions about how and why Peter died will be answered in court.
I’ll be live tweeting on @PeterInquest when the jury are in court.