It’s over 2.5 years since David died, in the Acute Assessment Unit at Hull Royal Infirmary (run by Hull University Teaching Hospitals NHS Trust) in mid January 2022.

David turned 40 five weeks before he died. He had lived in Hull, in his family home his whole life. David was the middle of three children, and after his parents divorced, continued to live with his Dad, Peter.

I spoke to David’s big sister, Keri, in compiling this profile. Keri says she became a doctor because of David, and that he had always been her motivation. She now works as a Consultant Psychiatrist of Learning Disability, specialising in autism. Keri was a constant presence in David’s life, working less than full time so they could spend regular time together each week.

David’s early life

David had speech therapy and learnt to use Makaton signs. Later in life, he was provided with an electronic communication aid and amazed people with his touch-typing skills and his ability to express himself using complex words like “despicable”, always spelling them correctly. He would not hold back with saying how he felt, telling people in no uncertain terms to go away when he had had enough of them. Keri recalls how his eyes would light up as his fingers touched the keys and he pressed the button to say what was on his mind, particularly when it was something cheeky.

David attended a mainstream primary school who were very supportive and keen to involve him in their community. All pupils and staff learnt Makaton so everyone had a way of communicating with David, and to ensure he was included in everyday school life. Keri describes how he took part in all school events, nativities and plays, sports day and residential trips. His best friend at primary school is now a special education teacher. In the holidays, David enjoyed trips to visit his grandparents and seaside holidays.

Keri believes those days were David’s happiest, something she attributes to him being fully included, by people who understood his communication and made the effort to learn how to communicate with him. She shares that old school friends, who are now adults themselves, say they still know Makaton and have taught it to their own children, because of David. 

This is a stark contrast to his experience of secondary school, where David was bullied by children who mimicked his verbalisations and called him names.

David moved to college after school, on a life skills course. He told his family he was being bullied by his peers and a member of staff had twisted his arm. Eventually David refused to go to college. He attended a summer activities scheme for disabled young people run by Kids, which he enjoyed, taking part in a range of activities including swimming and canoeing.

David loved to go swimming or to the cinema if a film interested him. He enjoyed short visits to his mother’s home and visiting Keri and her family. He also loved to shop for DVDs.

David was an expert on children’s television, with an extensive collection of DVDs which brought him great joy. He was very knowledgeable about children’s television programmes, enjoyed watching his DVDs and searching for episodes of his favourite programmes on YouTube, on an iPad.

After college David was encouraged to attend various courses by his parents, such as a computer course, and they also supported him to attend a group at the local youth centre. His siter contacted his social worker to ask if David could have support to go out and do things he enjoyed on a regular basis, but was told this was not possible and that people could only be supported to do college courses.

In his early 20s, David stopped wanting to attend any activities, and repeatedly told his family on his communication device that he did not want to go, and that computer screens were making his eyes “fizzy”. David’s family and GP asked for help from eye surgeons who initially declined to see David. By the time a different surgeon agreed to see David, it was too late and his retina had detached. He was registered blind. He was diagnosed with autism some time later.

David as an adult

In adulthood David needed sameness and predictability, finding comfort when he was able to manage his routines. Keri described how Peter had a deep understanding of David’s communication and his needs, providing him with a safe environment in which David’s distress was minimised. By this time, David would only use specific plates, eat certain foods presented in a particular way, and would only wear certain types and coloured clothing.

After losing his sight, David found some lighting difficult to tolerate. He became very sensitive to sensory input, strongly disliking certain smells and sounds (e.g. food sizzling in a pan) and the feel of wind or rain.

Keri details the decade of David’s life after he was registered blind as a constant struggle to try and find support for David that was meaningful to him. She lists a string of activities offered that did not really meet David’s needs, starting with a gardening placement (David had no interest in gardening) and ending with support workers who insisted on trying to take David to a cybercafe around the corner from where he lived, rather than on the bus into town to visit the library, which was where David wanted to go. David would often not want to go to do these activities as he did not enjoy them. Keri remembers his social worker made no attempt to listen to David and his wishes on how he spent his time.  David eventually received support from two Dimensions support workers, who would support him to do things he liked, such as swimming and shopping.

It is clear that David was very loved, and the centre of Peter’s life, supported by a sister who fiercely advocated for him. Keri describes the efforts their father went to in order to be able to care for David. Peter never smoked or drank alcohol, he had a healthy lifestyle and had run regularly until his caring responsibilities increased and prevented him from doing so. She says at the time of his death, she had no concerns about Peter.

“He was committed to caring for David and wanted to keep doing so for as long as he was capable of meeting David’s needs”.

Aware of his advancing age, Peter would occasionally ask Keri what would happen to David if he were to “drop down dead”. He asked the same question of David’s social worker.

Her father reported that David’s social worker did not seem to have a clear plan in mind, and he told Keri that he would not want David to be sent away to an emergency respite provider. Keri reassured her father that she would move into their family home and care for David in the first instance, for as long as was needed for something else to be arranged.

Summer 2017

David lived at home with his father his entire life, the only time they were apart for any time was a period of several months in 2017 when David ended up ventilated in ICU. This happened after David developed aspiration pneumonia following dental examination, extractions and root canal treatment under sedation in July 2017.

Keri explains David became acutely unwell following the dental treatment, and his GP said to contact 999 to arrange for David to be admitted to hospital. The first paramedics who attended incorrectly assessed David’s mental capacity and declined to take him to hospital. Keri describes fiercely advocating for David to receive the treatment he required, when a further set of paramedics attended a few hours later, and in the Emergency Department of Hull Royal Infirmary where the consultant wished to send David home.

She was successful and David was admitted that night, being transferred to the Intensive Care Unit within 48 hours, where he was to spend months on a ventilator as he recovered. At one point David’s family were told he was unlikely to survive, but he proved them wrong and managed to recover.

David was transferred to a neurorehabilitation ward at another hospital. He repeatedly indicated that his leg was hurting but the staff said this was “behavioural”. Eventually, Keri persuaded a consultant to examine David with her there, an xray was performed, and it was found that one of the muscles in his leg had calcified, resulting in David losing his mobility.   David repeatedly asked to return home, and he stopped eating, losing weight. David’s father would help David to take a bath when he visited daily, as the support workers supporting him in hospital appeared to be unable to do so.

Social care support 2017-2020

When David was discharged from hospital, he had a 24/7 care package of 2:1 support from his support workers. His family were told if they did not agree to that arrangement, then the social worker would “place David in full time residential care”, which he warned them could be out of area. That threat was made, irrespective of the concerns they had raised about the suitability of the support workers, who had not managed to support David with personal care.

Keri remembers David screaming when he saw the support workers arriving in his home and telling them to go away, and some workers spending their entire shift sitting in a different room to David. She recounts how her father was told to go upstairs and sleep when staff were supporting David overnight, but he would ring Keri the next morning, very upset, as he’d spent the night listening to David screaming and in distress until the morning, but felt he was “not allowed” to go and comfort David.

Keri believes this approach led to an increase in David’s anxiety and caused him psychological harm.

From then on, David required more reassurance from Peter, who in turn was suffering from increased fatigue, as a consequence of the ‘support’ from the support workers.

Keri recalls the Intensive Community Support Team from Hull Community Learning Disability Team spent time with the support workers, supporting them to support David, but this made little difference overall. Keri again raised her concerns with David’s social worker.

In early July 2018 Keri was told by the support workers as they were finishing a shift that it had been “a bad night”, and they asked her to let her father know that staff had “tried their best”. This was followed by her father calling Keri, very distressed at the state David had been left in (covered in urine, on a wet mattress, with no sheet or bedding).

Dimensions withdrew their overnight support for David later that month, leaving Peter to provide care for David, with Keri providing overnight support on two nights per week. She remembers David being very unsettled at that time repeatedly saying “no staff… no hospital…. stay home Dad today”. David required constant reassurance from his father.

Whilst this new arrangement clearly provided relief for David, Keri was concerned about the impact, and risk of exhaustion, on her father.

Then David was allocated a new social worker.

She suggested Keri take David to a respite centre, that he knew nothing about and had never been to. Her advice was to leave David there, and he’d be reviewed within a week.

Keri refused. She requested a best interests meeting. She felt those involved in making decisions about David’s life and care arrangements, were overlooking his autism, and trauma following his ICU stay, with devastating consequences.

David did attempt to attend the respite centre, with mixed results. David would scream on arrival at the centre and refuse to take his coat or shoes off. He would repeatedly ask to go home. He refused to eat there, the same as when he was in hospital, but in both situations his appetite would return as soon as he got home and was in an environment he was more comfortable with.

Keri remembers David making the Makaton sign for home whenever she visited at a weekend during that period. She interpreted it as him seeking reassurance that he was staying home that day, and not going to respite. Keri strongly believed respite was causing David anxiety and asked for psychological support for David from the Community Learning Disability Team. That never happened.

Keri repeatedly raised concerns with David’s social worker about his distress at respite, and his clear communication of his views about not wishing to return. The social worker dismissed his concerns as “protest behaviour that should not be rewarded”. This dismissal was what ultimately led to a Section 21A challenge in the Court of Protection, relating to David’s social care arrangements.

In February 2020, whilst Court of Protection proceedings were ongoing, David was dealt another blow as the Dimension’s support workers accompanying David to respite abruptly withdrew their daytime support, due to “reputational damage”. Keri is not clear what they meant by this but remembers her father mentioning at the time passers-by looking shocked as they saw support workers removing David from his home, clearly against his will, and bundling him into a taxi to take him to the respite centre.

Keri is clear that adult social care failed David throughout his adult life, failing to engage with him or what he was communicating.

“His social workers never made any efforts to get to know him in a way which worked for him or to communicate with him so that they could understand his own hopes and dreams for his life”. 

She says they made decisions about David’s life without understanding him, and continually demeaned and devalued him as a person. They ignored his communication of distress which ultimately led to a situation where at the time of his death David was only receiving support from his father and his sister.

Peter and David’s last two years

Keri describes the last two years of David’s life as much more settled and relaxed as David gradually returned to his former self.

She continued to visit her Dad and brother regularly, and on a Wednesday would support David to take part in activities of his choice. She would also regularly spend time with David at the weekend, she’d spend the day with him so her father could do his shopping, and she would stay overnight if her father needed sleep.

This became more difficult in July 2021, when Keri describes David losing his trust in her, and no longer wanting to leave the house with her. This happened after the Court of Protection authorised a covert total dental extraction for David, that required Keri to administer a sedative to him at home and travel with him to hospital by ambulance.

Keri had concerns David would associate her with the procedure, and that would cause a breakdown in their relationship. Her concerns were well founded. She describes David being scared in the ambulance, looking to her to help him. When he woke up from the anaesthetic, he was distressed to find he had no teeth.

David was wary of Keri for a long while and she believes it took months for him to trust her fully again. This was devastating for Keri. However, in the months prior to his death, with time and reassurance, he’d re-established his confidence in her.

Her father told her that David would use the Makaton sign for sister on a Tuesday evening, and when he woke on Wednesdays, to check she was going to come visit him. She said that they’d chat on those Wednesdays, read together or play interactive games on David’s tablet whilst her Dad went out.

“I used to tell David that Wednesdays were my favourite day of the week”.

When Keri raised the topic of getting a carers assessment with Peter he considered, based on previous experience, it would be a waste of time. He said he would ask for support during the daytime, which Hull City Council had already said could not be provided any place but the respite centre.

Peter was providing constant support to David. Keri would speak to her father regularly on the phone. Peter did not want a mobile but would keep a cordless landline with him wherever he was in the house. Sometimes he would not always be able to answer immediately when Keri called, as he was caring for David, but he would usually ring back as soon as possible afterwards.

Keri still had concerns about what might happen in an emergency and recalls discussing this with David’s social worker in a multidisciplinary meeting. She had the impression it was assumed Peter would get help in an emergency, or she would realise something was wrong and arrange help for them. Everyone knew David was not able to get to the phone.

Keri made a carer’s alert card for her father, after the social worker said she was unaware such a thing existed. She also made an autism alert card for David to carry in his wallet after the same social worker said they did not have them in Hull.

Early January 2022

Keri last saw her father alive on 5 January 2022. Peter went shopping, did some gardening and they ate a meal together and had a catch up. She asked her father whether he’d like her to visit at the weekend, he declined her offer, saying there was no need as himself and David were in a good routine. She told her Dad to call her if he changed his mind, that she could come over any time.

Keri and David spent the day together and David indicated, for the first time since the previous July, that he wanted to go to the shops the following week. Keri felt positive, she was pleased that David was thinking about getting out and about. She asked if he wanted her to visit at the weekend and he said no.

Keri told David she would see him the following Wednesday and remembers David blowing a raspberry at her, ruffling her hair and telling her she looked messy, waving at her as she left.

Keri does not recall what exact date she last spoke to her father. They spoke every day, sometimes several times a day, and she recalls offering to come over on the Sunday evening as she was free on the Monday. Her father said that there was no need, that they would see her on Wednesday. He said he would call if they needed anything.

David’s last day alive

On Wednesday 12 January, Keri called her father to check whether he or David required anything additional from the shops. Her routine was that she would always do their food shopping on Wednesdays, sometimes her dad would respond with a request, other times he would not be able to as he was busy supporting David, so it did not alarm her when he failed to return her call.

Keri got their usual bits and drove to their home. She arrived shortly after half ten and knocked on the door. There was no response. She called the landline again and there was no reply, so she left a message saying she’d wait in her car outside the house.

Keri waited in her car, trying the door a couple of times, realising that the latch was down inside so her key would not work. Keri left more messages for her father. She shouted “Dad” through the letterbox. She got no reply.

When she peered through the letterbox she saw the living room door was closed, she couldn’t hear her father and brother talking so thought they may have had an unsettled night and might both be asleep. This had happened on a couple of occasions in the previous years.

As time went by and Keri could still get no reply by phone, she returned to the house and could hear the radio was on through the letterbox. She wondered if they were deep asleep and could not hear her calling or ringing over the radio. She says she had no gut instinct anything was wrong.

At about midday Keri contacted her partner and discussed contacting locksmiths with him. She also spoke to her brother by message, he thought they were probably asleep and a locksmith might be a “bit extreme”.

Keri continued to wait in her car and googled locksmiths, making a shortlist of three in Hull. At around 2pm she contacted the locksmith, expecting that they would arrive and her Dad would come to the door and tell her off for getting a locksmith out.

The locksmith asked what time she wanted them and she said straight away. They warned her it was likely to be 40 minutes. Keri remembers the kindness of the locksmith, that they arrived earlier than expected, and that once they got the door open they insisted on waiting whilst Keri went in, even though she had said that was kind but unnecessary.

Keri went into the house and opened the living room door. She stepped in and saw her brother, lying on the floor next to his bed, she thought she heard him breathing. She recalls thinking it was strange her Dad and brother were both having a nap on the floor, her father lying facing David with their legs touching. She thought her father looked to be in an unusual position and when she saw his face, it hit her that he was not sleeping, he was in fact dead.

Keri rushed out of the room and rang 999. She describes the call, the ambulance service arriving quickly and David being awake but very weak when she returned to help them get him into the ambulance. She said David did not fight and appeared very tired. She was concerned he might have hit his head and his pupil looked odd.

David was taken to the Emergency Department at Hull Royal Infirmary.

Investigations following Peter and David’s deaths

The coroner ruled that there was no inquest required into Peter’s death.

Keri tells me that there was a ‘local learning review’ conducted by Hull Safeguarding Adults Board, but to date there has been no Safeguarding Adults Review.

Keri talked to their next door neighbour, who had lived next door to David his whole life, and they told her they had heard David screaming continually but had not heard the sounds of Peter replying on the Monday before David was found. Keri feels this was David desperately calling for help in the only way he could, but no one came.

Keri reported David’s death to LEDER and after chasing several times has now been informed that they will only investigate after David’s inquest has concluded.

The care that David received in the hospital will be the focus of his inquest on Thursday and Friday this week at Hull’s Coroners Court.

The inquest will consider the care and treatment David received on 12-13 January 2022 at Hull Royal Infirmary and, in particular, whether there was anything more that could have been done to escalate David’s care and whether he was treated differently because of his disabilities.

Keri has a number of concerns and unanswered questions, which she hopes will be addressed so that no other person with a learning disability has to endure what David did in his last days.

When I asked Keri how she is feeling she tells me that she is feeling a bit anxious. She is concerned that there will be no learning from David’s death. 

“I have been battling for David’s voice to be heard for as long as I can remember and don’t want to fail him. In all honesty, I’m not sure it has quite sunk in that he is gone. He was my sunbeam, I always felt so lucky to be his sister. And I’d always thought we would grow old together. David was the bravest of men, but the horror of what he went through in his final days is unimaginable, lying on the floor next to his dead father, desperately trying to get help. I believe that if David had been able to get help, he would still be here today. David’s death could have been avoided and there are urgent lessons to learn”.

I will update later this week.

David was a very private person and did not like having his photo taken. Keri has shared with me a photo of a collage David made, that is displayed in her home and has had pride of place in every place she has lived since he made it.