Continuing with the exploration of Prevention of Future Death reports issued in 2023 for learning disabled and/or autistic people, today I cover three more reports relating to learning disabled people. You can find the first post here and the second here.

Claire Twinn

Claire was 47 when she died in December 2022. She had Downs Syndrome, a heart defect called Eisenmenger Syndrome which resulted in irregular blood flow to the heart and lungs, and was classed as having a severe learning disability.

On 15 December 2022, Claire became unwell with a cough, sickness and diarrhoea, and her family took her to the Emergency Department at Newham General Hospital. When she arrived her oxygen saturations were low at 61% and she was treated with oxygen. The coroner for East London, Graeme Irvine, described what happened next as follows:

Clinical observations were taken and the patient was monitored, blood tests could not be taken as Ms Twinn had a significant phobia of needles. Her learning disability meant that she could not be persuaded to voluntarily provide a blood sample. Similarly, any assessment of potential confusion was made more difficult due to her non-verbal status. It was decided that a blood sample or IV therapy could only be administered if the patient was sedated. Ms Twinn’s complex lung and heart problems meant sedation would carry high risk and was therefore discounted.

Ms Twinn had continuous monitoring of oxygen levels, blood pressure and heart rate. A chest x-ray was undertaken that was interpreted by the emergency team as inconclusive of infection despite that, based on history, chest auscultation and a raised temperature, a working diagnosis of bilateral pneumonia was arrived at. A senior doctor took over care of the patient. Oxygen requirement was titrated down from high flow oxygen mask to low flow nasal cannula. Achieving saturations 75% at rest without oxygen, this was patients baseline level from medical notes.

A decision was then made to send Claire home with her family. Despite the working diagnosis being bilateral pneumonia, no blood tests having been taken and her being on constant oxygen whilst in the Emergency Department.

Claire was sent home with her family late in the evening on oral antibiotics. When her family went to wake her the next morning she was found dead in her bed.

The coroner stated:

The Trust now accepts that the more appropriate course would have been to admit Ms Twinn for observation, monitoring of oxygen levels and providing remedial oxygen therapy if a de-saturation occurred. The inquest took expert evidence into account in determining that an admission into hospital would not have, on the balance of probability, resulted in Ms Twinn’s death being avoided.

The matters of concern flagged in the Prevention of Future Deaths Report were:

1) Ms Twinn’s disability played a role in the provision of sub-optimal care, reasonable adjustment was not made for; her inability to communicate clearly and her impaired respiratory function when arriving at clinical decisions.

2) Neither the trust decision to discharge Ms Twinn and not admit for continued monitoring of oxygen levels and remedial oxygen therapy, nor clear safety-netting advice to carers was recorded in the clinical record.

3) Ms Twinn’s treatment did not involve any specialised learning disability nursing input to facilitate clear communication with Ms Twinn.

4) A radiological report of the chest x-ray taken on 15th December 2023 was not reported until 25th December 2023.

Mark McKessy

The court heard that Mark McKessy had learning disabilities and needed support from carers in the community.

He had limited capacity to understand the risks that this presented to him due to his learning disabilities. The significant threat his lifestyle and health issues posed to his life was not recognised by agencies. There was limited information sharing by agencies and no understanding of how his learning disability was impacting his health.

The Senior Coroner for Greater Manchester South, Alison Mutch, reported that as a consequence of Mark’s alcohol use, and the limited information sharing between those charged with supporting him, and their failure to recognise his needs, his health deteriorated and he was admitted to Stepping Hill Hospital. There he was diagnosed with decompensated alcoholic liver disease. He deteriorated and died at Stepping Hill Hospital on 18th February 2023.

His medical cause of death was given as:

1a) Multi Organ Failure

1b) Pneumonia on a background of Decompensated Alcoholic Liver Disease

and 2) Malnutrition

This appears to suggest that not only did the carers and agencies involved in supporting Mark fail to recognise the severity of his reliance on alcohol, they also failed to notice that he was malnourished (which I’d think would be easy to spot, even if his alcohol use was not).

The coroner sent a Prevention of Future Deaths report to One Stockport Health and Care Board about poor communication and information sharing between agencies, limited Care Act assessments and poor understanding of the extent to which Mark had capacity. This perfect storm seems so common.

The inquest heard evidence that he had significant leaning difficulties and his capacity was limited. He was known to agencies. Despite this the inquest heard evidence that steps to reduce the risks were not taken due to:

1) Poor communication/information sharing between agencies which meant that there was no coordination of care and no clear overview of his needs; and

2) A lack of recognition by agencies involved with him of his health issues and their inter relationship with his social care and learning disability needs including the extent to which he had capacity. This was compounded by limited Care Act assessments.

Shane West

Last summer I reported from Shane’s inquest in Swansea, almost 5 years after he died. You can read my reporting here. Shane, who had a learning disability, was 24 when he died on 17 August 2018 at Morriston Hospital, Swansea as a result of constipation. No post mortem was conducted because the coroner initially accepted the cause of death given by the hospital, but then a Health Board investigation raised questions.

At the conclusion of his inquest, Shane’s medical cause of death was found to be:

1a) multi organ failure

1b) cardio respiratory arrest

1c) abdominal distention caused by faecal impaction

and 2) Sotos Syndrome and Scoliosis 

The narrative conclusion of the inquest was as follows:

The deceased died from multi organ failure caused by cardio respiratory arrest due to increased pressure on the lungs from abdominal distention. The distension was caused by longstanding chronic constipation and fluid build up from his laxative treatment.

The court heard that Shane was admitted to Morriston Hospital on 31 July 2018 with chronic constipation and abdominal swelling, just over two weeks before he died.

The Swansea, Neath and Port Talbot Assistant Coroner, Aled Gruffydd, stated that the treatment plan was “conservative” and consisted of the use of “laxatives, enemas and colonic irrigation”.

The learning disabilities team of the Health Board were involved to allow Shane to understand the treatment being offered. It was noted that the extent of the constipation on admission was causing significant abdominal distention the result of which meant that Shane’s abdomen was pushing his diaphragm up into the chest cavity thereby restricting his lung function. Shane underwent regular examinations with varying results. On some occasions his abdomen felt distended, and on others it felt soft and non tender, suggesting improvement.

The day before he died, on 16 August, Shane deteriorated and was struggling to breath. He underwent surgery, which only provided temporary relief, before he died the next day. A 24 year old dying from constipation.

On the 16th of August 2018 Shane deteriorated with respiratory compromise. Shane underwent a colectomy and ileostomy formation to decompress the abdomen to allow effective mechanical ventilation. Whilst this procedure provided temporary improvement, Shane eventually declined further and passed away on the 17th of August 2018.

The coroner issued a Prevention of Future Deaths report to Swansea Bay Health Board. In court we heard how the laxatives prescribed to Shane would contribute to his tummy being distended, and to his discomfort, and how recording by nursing staff was unclear, so no-one could say for sure how much laxative Shane was actually given.

During the course of the inquest it transpired that the condition of Shane’s abdomen was changeable. Shane’s learning disability also meant that he was reluctant to report whether he was in any discomfort thus hiding the true picture. The cause of the variable abdomen condition was due to the osmotic laxative treatment filling the abdomen with fluid thus making it distended.

Shane was prescribed three sachets of laxative in the morning and three in the evening. On the 15th of August there also appeared to be an instruction for an additional 8 sachets to be administered. The nursing notes state that these were not given due to a maximum of 8 sachets being allowed over a 24 hour period, but the PAN prescription chart appear to be signed as being given. It was not clear therefore whether additional sachets were administered.

In any event Professor Colin Johnson acting as an independent expert witness stated that it was not the dosage that was relevant but at what frequency it was given, whether all together or staggered over 24 hours. It was found at inquest that the conservative method of treating the constipation was appropriate and there was insufficient evidence to state that excessive laxatives had been administered, however the combination of a longstanding constipation caused the abdomen to become distended and lose muscle mass meaning that it was inefficient at moving material along the gastro-intestinal tract.

A further consequence of longstanding distention was that it was continually pressing against the diaphragm causing Shane to suffer reduced lung function. The additional distention from the colon filling with fluid as a result of the laxative treatment placed additional and unrecoverable strain upon Shane’s respiratory effort.

I am concerned that in cases involving patients with learning disabilities (who commonly suffer from chronic constipation) the management of laxative treatment was not monitored closely enough to ensure a safe dose of laxatives.

In my opinion there is a risk that future deaths will occur unless action is taken. In the circumstances it is my statutory duty to report to you.

The coroner identified the matters of concern as follows:

1) There was a contradiction between the nursing notes and the prescription charts as to the amount of laxatives administered on the 15th and 16th of August 2018.

2) Shane was known to hide his physical condition on questioning due to his learning disabilities and saying what he thought people wanted to hear. As such it was difficult for staff to get a true picture of Shane’s condition.

3) Shane had ongoing respiratory compromise due to his abdominal distension pressing against his diaphragm therefore further distention posed a risk of further loss of respiratory function.

4) It was not clear whether medical professionals appreciated this risk and whether the administering of the laxatives ought to be staggered to allow Shane to receive the prescribed dose but not to the extent of overloading his already distended abdomen with fluid

I have been reporting inquests for almost 7.5 years and in that time I’ve reported on the deaths of Richard Handley who was 33 when he died, Jared Botham who was 20, Kristy Saleh who was 14 when she died and Sally Lewis who was 55 and Shane who was 24. All of their deaths were related to constipation.

How can we accept that people can die from constipation? Just how?

I’ll cover the remaining 2023 reports another time. With thanks to my crowdfunders who support this reporting, and all my inquest reporting.