Paul was asked to come forward, he gave an affirmation and confirmed his name as Paul Scriven and told the court he lived in Sheffield, South Yorkshire. He told the court that he was Myles’s uncle.

The coroner started by reading an email onto the record that was known to all the Interested Persons in the inquest. He told the court that it was provided by Paul’s husband David Black, and he asked Paul to confirm at the end that it was his concerns in the case.

[The coroner read the email, I didn’t catch it all, apologies].

The email said that they had two areas of possible concern regarding Myles’s death.

The first was that they understood Myles had contacted his GP two weeks before his death complaining of shortness of breath. The family were concerned to understand whether appropriate care had been provided to Myles. They wished to know whether PVT [portal vein thrombosis] was excluded, given Myles had learning disability and autism and a recent pulmonary embolism.

Myles was discharged from Hull Royal Infirmary on 22 October 2022. Myles was admitted to hospital twice with pulmonary embolism, the second time in October 2022.

The coroner continued reading. Given Myles had learning disability and autism there are concerns that proactive follow up by the hospital was indicated.

The email from David said that Myles had a history of autism and mild learning disability and he lives with his mother Jane Booth, who also has learning disabilities, her husband and his brother who also has special needs.

The family were told they needed to seek help if Myles was out of breath, their understanding was limited and the family are devastated.

Asked by the coroner if he endorsed all of that email, Paul responded “absolutely”.

In response to questions from the coroner Paul confirmed that Myles was 31 and he is his uncle. He told the court that Myles lived with his mother, who has a learning disability and went to a special school. Myles’s mother has never worked and finds difficulty in traversing life. Myles’s mother started a relationship with her husband Ashley, about 8 years ago.

“Ashley is a trusted and loving husband and stepfather to Myles and James”.

Paul told the court that James is Myles’s younger brother, about 6 years younger and he also has a learning disability.

“James and Myles were a unit … James absolutely relied on Myles, and Myles relied on James. They were attached at the hip and really could not traverse life without each other”.

Paul told the court that the brothers supported each other and were a unit based on their learning disability. They found it difficult in life to work without each other.

“Myles was a cherished member of our family, a unique and wonderful individual whose life was tragically cut short. Myles was not just a clinical case. He was a 31 year old man, full of warmth and love, who lived with autism and a learning disability.

He was a devoted son who consistently did his best to support his mother, who also has a learning disability, and welcomed Ashley, his stepdad, into our family. To his younger brother, James, he was a steadfast anchor who gave security, friendship, and love.

Despite the significant challenges Myles faced, including difficulties with communication, self-expression, and a limited understanding of the world around him, he embraced life”.

Paul said that Myles was an avid member of Huddersfield Town Football Club and enjoyed discussing football. Myles was fond of his family and loved to treat them to meals and buy small gifts. He also enjoyed going on holiday with his family and exploring new places.

As Paul moved on to discuss Myles’s communication skills he became visibly upset. The coroner asked if he wished to take a break but he continued.

Paul told the court that to understand Myles’s comprehension of the world it was important for the inquest to understand his limited ability to understand. He said that Myles had some ability for rote learning, however this was not accompanied by understanding. Paul said that Myles could recall memorised information or small sequences without understanding or grasping their underlying meaning.

“Tasks involving more than a few simple, sequential routines would invariably cause confusion. Unless he was reminded or given support, then he would remember”.

Paul told the court in his 31 years of knowing Myles he could not ever remember him performing assessments of risk in relationship to benefits of outcomes. He said that he would need family support to do this, from himself and David. He said this was one of the reasons why Myles was never able to work or hold down a job and why he received high level PIP.

Myles had a literal understanding of communication, Paul said, which meant general or unstructured statements or comments would lead to confusion “often resulting in a withdrawal into silence, or a quick snapped answer, or an appearance of bewilderment”.

Paul illustrated this with an example relating to football, a significant interest for Myles. Myles could accurately state the full time score of a match, maybe name the scorer of the last goal… he might recall some of the other goal scorers, but he wouldn’t be able to list in sequence the goal scorers

“With support and guidance at the end of the game he might recall the way the last goal was scored, for example indicating it was a free kick, but understanding and describing the sequence to scoring the goal was way beyond his capacity. He would become confused, silent and withdrawn”.

Paul told the court that based on this information, when Myles was admitted in October 2022 they would have reported delirium was not present, as was documented in Myles’s notes, but that he was showing typical behaviour associated with his learning disability and autism.

“Despite all this he had loving family members who did their best to support him within a system that is meant to do the same. Sadly, we as a family are of the very firm view that this system failed him.

We feel it is important to state for the record that, in our view, existing systems within the Trust and General Practice would not have identified the circumstances of Myles’s death, and consequently no changes to existing practices would have been made, had David and I not queried the initial natural cause given after the postmortem”.

The coroner then asked some clarifying questions and summed up what he’d taken from Paul’s evidence so far.

C: Very helpful, you’ve described how he presented, which I think is foundational evidence in the case, support he needed and frankly the challenges he faced in, can I put it like this, you can confirm, clarify or correct or say I have it wrong… impression I’m getting from you, evidence taking from you, is his ability to process information and order into sequential orderly thought was virtually non-existent?

PS: It was limited, anything over 2 or 3 issues would cause him problems yes, if asked maybe 2 or 3 hours after he would not recall what he could recall couple hours later

C: So recall was challenging?

PS: Yes, and I think the other thing is he tended to withdraw and be very quiet if he couldn’t articulate, or he felt out of control. He would give a very quick answer to try and please, and just let it be parked.

C: Can you give an example on a non-medical line?

PS: Yes. If I asked him what his favourite part of a holiday was two weeks after he’d say “sea”, because he liked the sea. He wouldn’t articulate what about it, or what he did on what day, would just be sea, because he didn’t want to show that he wasn’t comprehending the question very well…. or he didn’t want to show, he was aware his learning disability was there and through life he’d been bullied quite a lot because of it and that was his coping mechanism

Paul became visibly upset after talking about Myles being bullied and not wanting to show he was learning disabled. He composed himself and continued to read his statement onto the record.

“Myles died on April 16 2023, from a pulmonary thromboembolism. We believe, and the evidence we have now seen confirms, that his death followed a chain of missed opportunities, clinical misjudgements and organisational failures to adhere to legislation and acceptable practice”.

Paul said that Myles had contact with his GP just 4 weeks before his death. On Thursday 16 March Ashley rang the surgery to report Myles had been experiencing shortness of breath for two days.

A telephone consultation was arranged for the following day with Dr Khokhar. During that call Myles described breathing difficulties and stomach discomfort and his history of previous pulmonary embolism was noted. Paul said Myles was lying in his bedroom, he’d been there for a few hours and he wasn’t able to move.

“Despite these red flags, no face to face appointment was arranged for that day, which was required for an appropriate and timely clinical assessment to be made. No reasonable adjustments, indeed was can see no adjustments at all, were made for him and his learning disability or autism.

Instead, the GP suggested “watch and wait” over the weekend and booked him for a face to face appointment the following week.

We, as a family, are of the view this delay was entirely inappropriate for someone with Myles’s history, learning disabilities and risk profile”.

Paul outlined that Myles had experience two previous events in ten months, including a pulmonary embolus whilst taking anticoagulants. Paul outlined the content of the NICE Guidance, Clinical Guideline NG158 that makes clear patients with suspected pulmonary embolism “should undergo structured risk assessment and immediate investigation or hospital referral”.

“A three day delay in a face to face assessment was wholly inappropriate”.

On the Monday [March 20 2023] Myles was seen by a GP, Dr Martland, who noted tenderness in his chest wall but failed to carry out and document basic observations indicated by Myles’s clinical history and presenting complaint.

“There was no recorded blood pressure, no oxygen saturation, no pulse, no respiratory rate, and no temperature.

These are basic standards of care for anyone presenting with breathlessness, let alone a man with recent pulmonary embolism and known to be at high risk”.

Paul quoted from GMC’s Good Medical Practice guidance that requires contemporaneous, clear, accurate and legible record keeping.

Paul told the court that he did not see any clear indication that the potentially serious and life threatening nature of pulmonary embolism was taken into account by the GPs.

“The GP’s decision not to refer Myles to hospital or order urgent investigations stands in stark contrast to NICE’s recommendations, which demand escalation when PE is a possible diagnosis, especially in someone already anticoagulated.

We are deeply disturbed that neither Dr Khokhar nor Dr Martland have demonstrated any regret, or made any apology for their failures to provide care expected of reasonably competent GPs.

However, what is of greatest concern to the family is their lack of any suggestion of meaningful learning to date from this tragedy.

We are fearful that similar deaths will occur in the future unless these GPs change their practice, both in the management of suspected PVT and in their care of patients with learning disability or autism”.

Paul told the court that Myles informed his family that he had been told to “wait to get better” and only return to the doctors or the hospital if his condition worsened. Paul said Myles would have interpreted the advice to wait and get better literally and would have thought if his chest pain or breathing became more severe.

Paul said Myles’s condition otherwise remained the same for the weeks before his death apart from developing a slight cough a day before he died. Paul said with his learning disability and the limited understanding of his family, Myles and they would not have perceived a cough as his condition getting worse.

“On the evening he died, he was at home watching television with his brother. He said he was going upstairs to the toilet. His brother stated Myles did not appear to be any worse when he left him to go upstairs.

However, once upstairs his breathing changed, and he experienced a very significant pains in his chest. He was agitated and then fell to the floor, at which point the family immediately called 999”.

Paul then went on to tell the court that he did not believe the failings in Myles’s care began in primary care.

He described Myles’s October 2022 admission to Calderdale and Huddersfield NHS FT after he’d developed bilateral pulmonary emboli with right heart strain. Paul explained that himself and David were on holiday when Myles was admitted. The family explained that he was in hospital due to shortness of breath after a clinic test.

“It is normal that the family ring us at crisis point and that is a sign that they require us to support them as they do not understand what is happening and can’t advocate in an effective way.

Despite being on holiday, David immediately rang the Learning Disabilities Matron and explained about Myles’s learning disability and autism and what he would require.

We did this whilst in the middle of a walk on Madeira, which is why it sticks in our memory.

He explained that Myles would require support in communication and would also have problems in understanding his medical care and what was happening to him and it is normal that we support him and the family in decision making at times like this, and explained why Jane would find it hard at times due to her learning disabilities

Furthermore, we explicitly asked to be kept informed so we could support Myles and the family with any medical issue or if things were needed by the hospital.

We requested Myles was asked to give consent to the above”.

Paul told the court that an hour later David was rang by a doctor in training so Myles must have been asked permission to have David informed as to his care. David was given an overview and he was told further tests were required.

Paul said later on the Learning Disabilities Matron Mckie rang back to inform David and Paul what she had done, that she’d flagged learning disability in Myles’s file and made recommendations in Myles’s medical notes. She also stated she was going on holiday and would not be contacting them again while she was on holiday.

“Crucially at no point were we contacted about the worries of noncompliance of medication, the discussion about his change of medication or anything of that nature.

If we had been, I would have been able to explain the long conversation I had with Myles in September 2022 after his DVT and his understanding of the importance of him taking his pills to keep him alive. That discussion took over an hour with him and his family and he was able to understand the significance of those pills.

Despite our explicit request for contact in the event of concerns or if support was needed for Myles and the family, we received no further contact from the hospital”.

The coroner wanted to explore with Paul a little more about Myles’s understanding.

C: Can I just ask a question?

PS: Yes

C: Obviously there is a concern raised by Professor Hunt, to some extent acknowledged by Dr Hardy… About an assumption made that Myles was simply not taking his medication, that he wasn’t compliant. Are you saying you had a conversation with him?

PS: I had a conversation with him

C: And the whole family, his brother, his mother and his step father, where you impressed on all of them the necessity?

PS: 2 days after he was discharged from hospital, in Huddersfield at their home, around a table with coffee, it took an hour. Took that time so they understood the importance of him taking those pills… wanted them to understand the reason why. We talked about his blood getting sticky, he didn’t know what a clot was, the word clot to Myles was a waste of time. Myles understood his blood got sticky which would block his blood going to his heart, and his heart would stop and he would die. He understood that, he talked about thin blood, sticky blood, heart stopping, living.

C: [missed]

PS: You had to break it down into very small components and check he understood… time he used words very simple to him

C : If you broke it down into blood, sticky, clot?

PS: Heartbeat, death… sequentially very slowly go through it, one block check, next bit block check… give him time, go away

C: One hour in total?

PS: Ask him what he remembered, might remember last block, first block. By the time I left Myles understood he needed to take his pills to keep him alive, he knew without my pills I will die.

C: Now, that was after his discharge in October?

PS: No, that was after the first DVT

C: Oh right

PS: That was after his first DVT, in September after he was discharged. We were clearer, the family and Myles might not have understood what rivaroxaban was, he probably wouldn’t know what his pills were called, but we talked about pills for blood and heart.

We understood may be lack of understanding after DVT of the importance of taking those pills, which is why we sat down and explained. We did with most pills but with these pills we were adamant he needed to understand.

C: That was after the first DVT, before admission in October?

PS: Correct

C : Can I ask did you have any subsequent conversations about taking his rivaroxaban?

PS: Yes, we went over about once a month to support with things, every time would ask if he was taking his pills, how, he tended to take with his breakfast. So I knew he was taking them with food, then I’d triangulate by asking his brother James, they were a unit. So, the person to ask if he was taking his medication was his brother, James, not his mum.

C: What about his dad?

PS: Ashley worked, he worked shifts, so sometimes wouldn’t have been there, the best person to ask would have been James. By triangulation I was able to, I personally had no concerns whatsoever Myles was taking them.

The coroner asked Paul to explain what he meant by triangulation.

PS: Just checking, because Myles had a learning disability, I understood the importance. I wanted to check he was taking his pills, I’d ask James away from Myles and the answer I’d get was exactly the same, he took his pills with his breakfast.

C: OK, now this is I think quite important, are you satisfied in your own mind, as someone who had oversight of this family, particularly Myles that he was compliant with his medication?

PS: Yes. Otherwise I’d have stepped in, absolutely, absolutely, which is why I asked and continued to ask James and Myles. If I’d any concerns Myles wasn’t taking his medication there would have been a family conversation to understand what was happening

C : You understood the danger to life of not taking medication, and you were satisfied that he was taking it?

PS: Yes

C: Using the techniques you described?

PS: Yes

C: If in any doubt you’d have stepped in?

PS: Yes. I’d have understood, there would have been a family conversation, if was just Myles he’d have thought I was blaming him, so would be together…

C : How important to have his mother and James there?

PS: Was important he had support. We could pick up on things, and sometimes Myles didn’t understand, interestingly James or Jane would say to me we didn’t understand, we don’t know if Myles understood, would be trigger for them to ask me to step in and do things. They did act as a unit at times.

David and I had an overview, and knew what was important and we’d keep checking, which again is why we’re bewildered why the hospital didn’t contact us. It’s in his notes, it’s been specifically asked for.

Equality Act 2010, Mental Capacity Act 2005, NICE Guidance, it’s all in there about involving people, families and carers in someone in Myles’s situation. Completely ignored, we are baffled sir, baffled, baffled beyond belief.

C: OK. For example I know Dr Hardy is here and he’s commented in his addendum statement on Dr Hunt, is residual point where he made assumptions about compliance and non-compliance.

PS: Would he have made those assumptions about me, or Myles if he hadn’t had a learning disability?

C: Had he had that conversation with you, what would you have conveyed?

PS: What I’ve relayed here, would explain conversation, how many times seen him since, how every month I went over I’d check. Every month I’d also check the number of pills, I’d check the number of pills, show me your pills, so it was done not in terms of his understanding, have they changed, what colour?

C: How were pills presented? In a dosette?

PS: No, no provision was made, in a box.

C: So he didn’t get a daily allowance?

PS: No we think he wasn’t flagged as learning disabilities in the hospital notes until such time as David rang… so his first encounter with hospital in 31 August, he’d not been flagged as learning disability, therefore not flagged he required reasonable adjustments

C: Alright, he was by the second?

PS: Yes, David rang, they say he was flagged on the second, Learning Disabilities Matron, Amanda Mackie

C: Amanda Mckie, who is here?

PS: Yes Amanda Mckie did go down and personally did flag him as having learning disability, which we’re very pleased was done, was exactly the reason for the call

C: OK

Paul raised his concerns with the coroner about the significant lack of information shared with Myles’s family during their daily visits to Myles when he was in hospital.

PS: They were never asked about his medication compliance while there, nor were they informed of any concerns regarding him not taking his pills. Sorry Jane and James went daily, Ashley went twice because he couldn’t go on one day.

C: This is the October?

PS: Yes. They were never asked face to face despite all these issues about non-compliance, not one of them asked face to face in 4 days Myles was in hospital, by any doctor whether he was compliant, not one. This left the family, David and I entirely in the dark until we were able to review Myles’s full medical notes as part of this inquest.

Paul told the court that the only discussion had about Myles supposed non-compliance with medication with Jane took place when she was on the bus home from the hospital after visiting. She said she had no concerns that Myles was not taking his medication.

“We find the lack of not changing Myles onto what would have been a lifesaving anticoagulant incomprehensible.

Indeed, the MDT review admitted this was not explored because of an assumption of non-compliance.

This represents a departure from good medical practice and a clear indication of diagnostic overshadowing.

Professor Hunt’s expert report highlighted this failure, that the treating team did not adequately investigate or explore for underlying causes. Testing for clotting disorders “in a few weeks” was noted in the records but was never followed up.

It was a terrible and tragic failure by the hospital to discharge Myles from hospital care on the same medication that he had already had a major pulmonary embolism whilst taking, without arranging any investigations of underlying causes and then no follow-up at all to check and support Myles to take his treatment.

This would represent poor care for any young man, let alone Myles with a learning disability and autism. No reasonable adjustments at all appear to have been made for Myles.

We must express our deep frustration and dismay. Myles had family advocates, including one who is a doctor, who would have supported Myles in his decision-making.

Despite our clear willingness and request to be involved, as noted in Myles’s medical notes and in line with Principle 2 of the Mental Capacity Act we were never contacted or informed about the crucial and complicated choice between different and probably life-saving anticoagulants”.

Paul then moved on to address failings to learn by the Trust and its inability to make reasonable adjustments to support Myles.

“Sir we are flabbergasted at the lack of insight by the Trust into its failings in the lack of support to Myles as a person with autism and learning disability … reasonable adjustments should have been made and were not.

The advice of the Trust’s own Learning Disability Matron was ignored.

There is no evidence that a Hospital Passport was actually used, and we cannot find any evidence of adjustments of verbal and written communication was made, or any other measures to support him, as laid out in the Equality Act 2010 or the Mental Capacity Act 2005.

We were never informed about the complicated treatment choices that Myles was asked to make, so he did so without any appropriate support to do so.

Beyond placing Myles in a side room, we find no evidence of reasonable adjustments being made to accommodate his specific needs, as legally required by law, the Equality Act 2010, either by the GP or the hospital.

This was compounded by the failure to understand what support should have been put in place to give Myles full capacity and understanding, despite a clear note in his medical records dated October 21 2022, indicating a full capacity assessment was required and full documentation should be kept. Furthermore, there was a failure to appropriately involve his wider family, again explicitly noted in his records of the same date”.

Paul went on to point out that the lack of involvement goes against medical guidance from NICE, from the GMC, against the Mental Capacity Act, the Equality Act. He said all of these emphasise the importance of supporting people with Myles’s conditions by including involving wider family members so Myles could understand the risks when making difficult decisions about his healthcare.

The coroner paraphrased what Paul had said to check his understanding. He said by 21 October 2022 it was on Myles’s medical records, his hospital notes, that the hospital passport was needed, that it was necessary to have reasonable adjustments to meet his needs because of his learning disabilities, that he struggled to understand and needs support, mainly Easy Read leaflets and information broken down into small chunks, and keep the family updated – there I’m reading from the entry by Amanda Mckie.

Paul added that consent should have been sort from Myles for staff to ring David, and update him about his care. Paul was of the view someone must have done that as they did ring David.

C: To summarise you’re saying first of all if family had been kept informed and involved accurate information could have been conveyed, absorbed by clinicians in the hospital and that didn’t happen.

Secondly, no meaningful adjustment for his learning difficulties were actually applied

PS: Apart from putting him in a side room

C: Apart from putting him in a side room. So the means of obtaining information from him on his behalf were known about and not adequately acted upon?

PS: Correct, clearly the law wasn’t applied, never mind guidance

C: That’s as maybe, it’s not my job to visit that, this isn’t a trial for breach of regulatory requirements, I’m looking at causation, I’m not ignoring what you’re saying but primarily interested in whether this contributed to the death and possible conclusions, alright

PS: thank you.

C: I’ll make a note of that so I’ve heard your evidence correctly, just pause for a minute I’ve got to write this in a way that is ultimately legible to myself.

Paul continued and highlighted the sources that he said made it clear lessons from so many different failings have not been learned. He cited the GP Statements, the Trust’s written responses to family’s questions, the MDT report, the AMMR and the statements of Matron Mckie and Dr Langara.

Paul told the court that no formal capacity assessment was carried out before Myles was asked to choose between remaining on rivaroxaban or switching to life-saving warfarin. He said there were no records of an assessment of Myles understanding of the information he’d been given.

“No records of an assessment of his understanding of the information he was been given, his ability to compute it and no test of his recall and explanation of the options and why he was one word “happy” in choosing the status quo was taken and deemed significant, not just to show capacity but informed consent”.

Paul went on to tell the court that Leder constantly highlights people with learning disability face shorter life expectations, someone in Myles’s situation 19-20 years, in part he said, because systems too often ignored the support he needs.

Paul said that Myles’s family, including his mother Jane, who herself has learning disabilities, as noted in Myles’s notes, were not meaningfully involved in decisions. He said their insights were not sought or documented.

Where was the multi-agency care planning? Safeguarding consideration? Or communication with us, his family?

“We are of the opinion that the Trust and GPs have failed Myles, resulting in a catastrophic outcome.

Myles did not die suddenly … Myles died because warning signs were missed, and care was not adjusted to his needs as a person with autism and a learning disability.

The system assumed noncompliance instead of seeking answers to why he had recurrent thrombosis.

His wider family, who had always advocated for him, were not treated as partners in his care, and the GPs did not treat his call and symptoms as a life-threatening situation and act accordingly.

In conclusion, as Myles’s family, we have significant concerns about the standard of care he received from both primary and secondary healthcare providers.

We believe there were missed opportunities in:

• medication management
• follow-up, and review
• a lack of treating Myles’s life-threatening symptoms as an emergency by primary care
• a lack of meaningful engagement with his family and
• a failure to adequately address his needs as an individual with learning disabilities and autism, leading to diagnostic overshadowing”.

Paul told the court that they needed a clear acknowledgment that Myles was failed by the care he received and that significant mistakes were made. He said crucially, Myles’s significant needs arising from his learning disability and autism, were not taken into account.

“He was not provided with the appropriate adjustments and support that could have helped prevent this tragic outcome”.

Paul ended the family’s statement by saying they wanted implementation of robust plans, comprehensive policies and effective implementation strategies specifically addressing the management of DVT/PE and the care of individuals with learning disabilities.

The family acknowledged some improvements had been made at the Trust since Myles’s death, however they also note “other suggested improvements are reportedly in the planning stage without implementation dates” He said they were still waiting to see any changes from the GP Practice.

“Frankly, as a family we remain unconvinced. We are not yet convinced that all the deficiencies in Myles’s care have been fully identified, nor that the truly necessary learning and subsequent improvements will be comprehensively made … We stand firm in urging that the crucial observations and suggestions made by the three expert witnesses must be used to genuinely guide and implement improvements in service

We hope that this inquest will provide us with the answers we seek and, more importantly, will lead to meaningful changes that will honour Myles’s memory by improving the care provided to others and saving the lives of some of the most vulnerable people in our communities”.

The coroner turned to the interested person’s representatives in turn, none of them had any questions for Paul Scriven. He was released at 11:42 and court was then adjourned for a 10 minute break.

[I will report the rest of the evidence heard on Day 1 later in the week – likely to be Wednesday/Thursday before I am able to write it up].