Peter was born in 1954 in London, the youngest of four children following Ricky, Karen and Mick. 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.
When Peter was less than a year old he had double pneumonia, and there was a possibility 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.
“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.
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. …he never did learn to read and write”.
Mick recalled: When we were kids my older brother had a record collection. Peter wld 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.
Peter, Karen and their Mum lived in Leigh on Sea in the family home together. 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.
Karen remembered how she used to take Peter up the pub and “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”.
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 for 30 years. Peter used to like going on those. Peter, Karen and their Mum liked their holidays. They went to Austria for Christmas one year and went on coach trips around England, Wales and Scotland.
As their Mum’s dementia worsened she moved into a home in the 1990s. In 2012 Karen and Peter moved up to Norfolk to be nearer to their brother, Mick.
In summer 2015 Peter choked on a piece of hotdog sausage and was admitted to the West Suffolk Hospital. The Speech and Language Therapist diagnosed dysphagia and put him on a pureed soft diet. Karen followed Peter’s dysphagia plan without any problems while he lived with her.
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.
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…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”.
Mick is certain the Court of Protection judge would have allowed Peter to return to Karen’s care if the case had concluded before he died… “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”.
“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”.
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”.
Karen continues recounting the post mortem results:
“There was a large piece of carrot stuck down his throat. 2cm wide. Peter wouldn’t eat carrots, he was really fussy with his veg, he’d only eat white veg. …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 62 years. He was in the care of the State for less than six months before he died.
Peter’s inquest took place in August 2021. You can read a transcript of my reporting after it concluded by clicking here or in the blog posts below.
Mick and Karen were left with many unanswered questions and very unhappy with how the inquest had been conducted.
HJA explain what happened next:
Wholly disappointed by the conduct of the inquest and its outcome, the family instructed Priya Singh, assisted by Megan Finnis Trainee Solicitor, and Simon Cridland to represent them in a Judicial Review challenge of the same. The application sought the following remedy:
The grounds of challenge were that, in making the two determinations regarding the applicability of Article 2 and the rider of neglect, the Defendant had erred in law and/or acted irrationally in that she reached a conclusion that was not reasonably open to her on the evidence and had she properly directed herself to the law.
Upon receipt of the family’s letter before claim and Statement of Facts and Grounds, which set out the basis of the challenge, neither the Coroner nor any of the Interested Parties to the original inquest contested the application.
On 17 January 2022, the Court handed down an Order in the terms sought, quashing the conclusion and record of inquest of the first inquest and ordering that a fresh inquest be held by a different Coroner.
Peter had Downs Syndrome, but that didn’t make him any less of a person. He was described in Court, and his family know, just what a cheeky, loveable chap he was. He was entitled to dignity and care like any of us. The whole purpose of that care home, which took him away from the care of his family, was to look after him safely.
The family still need answers about why his Speech and Language Therapy care plan was not fully adhered to. Why the care home did not alert social services properly after Peter choked and had to have his back slapped six times to have his life saved, one month before his death. And why, now that social services know this is what happened, they are still not saying they would absolutely investigate a case like the April 2018 choking incident. We need to see changes in the system.
We will never forget our brother. It is because of him that we want to make sure something like this never happens to any other vulnerable person in our community again. Peter was not the first person with learning disabilities to die in a care home in Norfolk, but after today, we hope he will have been the last.
We strongly believe had Peter continued to live at home with, and be cared for by, his family, he would still be with us today.