Marcus Hanlin was born in July 1965 and was just 57 when he died in October 2022.

When I spoke to his mother, Anna, early last year she told me when Marcus was born she had no idea that she could fight for him.

“I had no idea I could fight for him. I said is that all there is, is there no other choice? But then I’d accept what they told me”.

She recalled as she became a professional person she was treated differently, she asked more penetrating questions and what followed was a lifetime of fighting. Fighting for Marcus, whilst he was alive, and following his death.

Marcus grew up with his mother and his older sister in London and Bristol. When Marcus was five, Anna was told her son was “ineducable”. She recalls Marcus went to a Training Centre for a while, before eventually a change in policy led to Marcus being admitted to special schools.

Marcus had Down Syndrome and in his thirties it was recognised he was autistic and he was diagnosed with obsessive compulsive disorder. Shortly before his death he was diagnosed with Alzheimer’s Disease.

Marcus didn’t use words to communicate, instead communicating through his body, his facial expressions and his humour. Marcus was charismatic, mischievous and always ready with a smile or a gleeful chuckle.

Over the years Marcus enjoyed swimming, or floating, cycling, craft, drama and music sessions. He loved to spend time outside and in the garden. He also loved farm animals and he also loved to people watch. Marcus was sociable and loved to be with other people. He enjoyed a final holiday with his mother and sister in Wales the summer before his death.

Another of Marcus’s big loves was food, a favourite dinner was Spaghetti Bolognese, and he was always keen to go out for tea and cake or a meal with desert afterwards. Marcus loved food, always hopeful for seconds and a little disappointed when the food was over.

Marcus was admitted to a long stay hospital three times in his life, the first as a child, then in adolescence and as a young adult, always due to a lack of support in the community. Marcus enjoyed spending time at various day services and activity centres.

Marcus had been in Farleigh Hospital, Flax Bourton in his late teens and early twenties. Next week his inquest will be held in the Avon Coroner’s Court, yards from where he once lived.

On leaving Farleigh Hospital in 1989, Marcus who was 24, moved into a house with three other men from his ward. They lived in a house in Bristol with 24/7 support provided by staff from the hospital and attended a day centre full time.

Anna recalls the big changes of the 1980s, the hope and optimism as the hospital closure programme became a reality. That optimism was short lived though, whilst things did get better, and clearly it was better for people to be living in the community, Anna remembers budgets being cut shortly after and it becoming a constant battle to get Marcus the support he needed to live a good life.

Within less than five years of leaving hospital, Anna says that funding had switched to joint funding with social services and the staffing levels decreased. In the mid 90s Brandon Trust took over the ownership and management of the house Marcus lived in.

Marcus lived in the same house for almost thirty years, with the same three men, who were all similar ages. At some stage it was suggested to the men in the house, and their families, that they should be transferred to Supported Living. Anna says the whole process took about three years and at that point the house was sold at market value to a housing association, she believes the capital went to Brandon Trust.

Marcus, and his housemates, had been paying for the house for twenty years at that stage, Anna recalls asking if the men could own the house, for their lifetime, given they had almost paid off the mortgage. She says they never got to the bottom of it, and suddenly Marcus and his housemates were paying rent.

Anna recalls spending hours editing care plans to reflect the conversations that were held, she says she would make copious notes and the changes were always accepted.  

“I’d spend hours over them, but it didn’t make a blind bit of difference”.

Over the years there were settled times when Marcus thrived, and then there was times of great change which caused him significant harm.

Anna remembers getting a phone call “out of the blue” saying that things would have to change at Marcus’s home as one of the men had died and another’s care needs could not be met longer term.

Anna believes this was related to the local day centre closing. Marcus and one of his housemates had family members who fought to get alternative opportunities for them, the other two did not have family members involved and she says that their advocates did not appear able to achieve what families could.

“One of the four men went terribly badly downhill, you could see visit to visit, he was getting more demanding, was being quite difficult, he probably had the greatest intelligence of the four of them. He needed stretching, he had college and the day centre before, he was bored out of his mind, basically at home all day”.

Anna saw how these changes, and changes in the Brandon Trust staff teams, affected Marcus. At this time, Anna said she was told Marcus would have to share his home with others who could not be matched for suitability, or he would have to move.

Anna says she started calling around, to try and find an alternative place for Marcus to live in early 2020. Nothing she found initially was right. Then the Covid pandemic hit the UK.

Anna describes the first year of the pandemic as “a year from hell” for Marcus. His family were not allowed to visit, Marcus struggled to understand video calls, the day centre was closed so he didn’t have the relief of time there.

Anna says staff were “all over the place, with people leaving”. Marcus’s two housemates left in quick succession and he was on his own, which was awful for Marcus, who liked company and to be with other people.

Anna says Brandon Trust blamed all the difficulties on covid, she acknowledges that to her knowledge they did keep all the people they were supporting alive, which she acknowledges is no mean feat. However, she believes they could and should have foreseen the changes that would be needed for Marcus and his housemates as they aged.

She said that Marcus was offered various other places run by Brandon Trust to think about moving to. She recalls these were unsuitable, either too far away, or not suited to his needs. Due to the pandemic they couldn’t visit inside the homes or see what things were like, but Anna and Marcus’s sister did visit two places just before Christmas 2020.

One of these was Cheddar Grove in Bedminster, a nursing home run by Brandon Trust. Anna recalls there were Christmas lights all over the windows, there was a welcoming committee of people, they were offered a hot drink and peered in through the windows and doors. It was a detached building and they were able to walk around it to get a sense of the place.

“Everywhere we looked were fun things, we thought this isn’t a stiff and starchy place. The last place we couldn’t see a lot, because of the layout, we couldn’t get into the garden because the only way in was through the house. It kind of looked very organised and sterile.

This place, this place was warm. We were freezing cold but we felt the warmth, this was slightly bonkers we said to ourselves afterwards. It had nurses. It hadn’t occurred to us before, nursing homes were not in the picture, but where there are nurses they have considerable training and different ways of thinking.

They were so interested in Marcus, asking lots of questions. Some of the places we’d been had told us lots of what they were, without asking about Marcus. They were asking what’s he like and what does he like. We thought they were interested”.

Anna loved what she had seen and there was a ground floor room available, with doors that opened into the garden. They said they’d talk with Marcus’s social worker and see what was possible. Her biggest worry was that it was another home run by Brandon Trust, but Marcus was desperate for a solution.

On 1 February 2021, Marcus moved into Cheddar Grove. Covid was still very present and moving was a challenge but the staff had put effort into preparing for Marcus’s move. They asked that they be supported by staff from his house initially. Marcus moved in the afternoon, that night the staff sent Anna a photo of Marcus tucked up in bed and she couldn’t believe her luck, Marcus was smiling, and seemed okay.

Marcus had difficulty sleeping when he first moved, but Cheddar Grove had permanent night staff so this wasn’t in itself problematic. At the end of Marcus’s second day in his new home, it was decided the staff from the house weren’t required. Anna says that they didn’t know Marcus that well as they hadn’t been there long and he seemed to respond well to the staff at Cheddar Grove.

“He seemed to be quite happy, and he was sensing what we sensed, he came from a hellhole into somewhere they welcomed him, noticed what he likes and doesn’t like, he’s instantly responding to that”.

Anna couldn’t believe the difference in approach. The staff were sending photographs every day and updating her on how Marcus was. She was relieved. She recalled Marcus settled “amazingly quickly” and by his birthday in mid-July, he was pretty much back to himself.

“He was cheerful, enjoying being there. They were active, they noticed what people liked. There were some guinea pigs in the garden because one of them loved guinea pigs.

His key worker, Katherine, was a nurse. She was amazing, sadly she got burnt out and left”.

This is where things started to go downhill again. Anna is quick to acknowledge the staff who worked at Cheddar Grove when Marcus first moved there. She says there were some “fantastic people” there, but they were also coping with endless bank and agency staff members.

A year after Marcus moved in, the registered manager and his key worker, both whom she describes as “lovely”, announced they were taking early retirement.

She said this had always been a fear. The two nurses were leaving. Anna acknowledges that they looked exhausted and had worked tirelessly, and that they had no real choice but to ride the storm, and hope that they were replaced by people who shared their skills and commitment.

In April 2022, a new manager was appointed. He was not a nurse. Anna said he was “pleasant enough” and they gave him the benefit of the doubt. However in time Anna recalls that she began to notice changes. Fewer interactions between staff, and between staff and residents. She says Marcus seemed listless.

In August, Marcus went on holiday to Wales with his mother and sister, supported by two care workers from Cheddar Grove.

In September, Anna recalled Marcus being lethargic on the day she visited. She says this was not unusual in itself, but he looked tired and wasn’t very engaged. She says the home were experiencing difficulties in staffing that meant Marcus was not always able to go out and about. She recalls a conversation with the new manager where he told her that he didn’t see his long term future at the home.

“I pushed a little bit, and he said neither Brandon nor he had any expectation that he would stay. He didn’t see his job as being about a home for seven highly dependent people… this is their home, he didn’t see it as a holistic somewhere where he’d put his mark on it or whatever, he saw it as a discreet set of problems to resolve…. I was worried”.

On 26 September 2022, Anna and Marcus’s sister submitted a formal complaint to Brandon Trust about their lack of planning for the move of the residents at Marcus’s former house. They also told Brandon Trust that since the change of manager at Cheddar Grove, some of their fears were beginning to materialise in Marcus’s new home.

Anna could not have anticipated what was to follow.

Two days later, on Wednesday 28 September, when Anna was at home in London she received a phone call to say not to worry but that Marcus had been taken to hospital for a check-up.

She says she wasn’t overly worried at the time. In the recent past Marcus had been having seizures, they were fairly well controlled by medication, but him being taken for a check-up was not in itself too concerning.

Later that evening Anna took the night train to Bristol, after she spoke with a doctor and it became apparent Marcus was seriously unwell.

The inquest will explore what happened and how Marcus came to die five days later, on the evening of Sunday 2 October 2022.

Anna has been able to piece together the bare bones of what happened, they involve an art activity taking place in the lounge for another resident, that involved brightly coloured dried rice and conkers. Marcus, who had dysphagia and should have always been supervised around food, was left alone in the room and found some time later with rice on his lips and conkers around him.

Inquest report Marcus’s cause of death was:

“Aspiration pneumonia, Down’s syndrome, and pharyngeal and oesophageal obstruction due to ingested conker and aspiration of rice into the lungs. The presence of conkers was only discovered after Marcus’s death”.

Whatever the inquest finds, Anna is clear that Marcus’s death is not a one off tragedy. She situates it within decades of indifference and neglect of people with learning disabilities.

“I see his death as totally situated in the political, disgusting, state we’re in and in the disgusting decisions made and the disgusting value system we have”.

When we first spoke at the start of last year, Anna ended our conversation with her reflections of lifelong fighting for Marcus’s basic needs to be met.

“I know nothing can bring Marcus back, I’m struggling with that. This is an appalling event that has happened in a context. People and things happen, behind those people and things is context, back and back.

I’m appalled at how many cases there have been. What I’m going through, what families are going through, what the person themselves went through, is beyond anything acceptable.

It is not acceptable for human beings to go through these things…  it’s unbearable. Part of me says I’m too old for this, I can’t do it again, never in my life did I think it would end like this.

I didn’t think it would be an easy ride, thought he’d have dementia and we’d deal with it. I want to make a hell of a stink, we need to get to the bottom of exactly what happened, so far as its possible.

I know I’ll put the effort in, I’m tired and old and nearly 80, am I never going to be let off the hook?”

Anna is now 80, a mother still fighting for her son.

I’ll report from court on the opening day and all being well will return for the coroner’s summing up and conclusion.