Richard’s story: unmanaged constipation in people with learning disabilities

Emily HandleyEmily Handley is a senior clinical psychologist in the mental health and learning disabilities service at South London and Maudsley NHS Foundation Trust.  She describes how a joined up focus on the mental and physical health needs of her brother Richard could have prevented his tragic death from unmanaged constipation. This piece first appeared as the foreword to the Public Health England report ‘Making reasonable adjustments for people with learning disabilities in the management of constipation’ in August 2016.

My brother Richard had Down’s syndrome, psychosis and a mischievous sense of humour. He loved theme parks, theatre classes, watching ‘Mr Bean’ and tickling people’s toes! Richard also had constipation from birth. There’s nothing glamorous about ‘poo’ but my parents understood Richard’s needs and did their best to make toileting fun! Laughter could be heard from the bathroom every night, as my parents helped Richard to relax and encouraged bowel movements.

When Richard left home, assessment reports by professionals said very clearly that his constipation would always need close monitoring and support and that constipation should always be considered as a potential cause, when his mental health deteriorated. Somehow, this knowledge was lost over the years.

Richard sadly died very suddenly in 2012 as a result of unmanaged constipation. He was only 33 years old. Over 10kg of faeces was removed from Richard’s bowels before he died and his bowel was 18cm diameter at post-mortem. His psychiatrist and GP had both seen him that week but did not recognise the extent of faecal impaction. Richard’s withdrawal and distress were attributed to his mental health and a mental health admission was arranged, when he actually needed urgent medical attention.

When Richard was finally admitted to hospital, his assessment and treatment were inadequate, the faecal impaction persisted and he aspirated gastric contents and died. It is difficult and harrowing to imagine how much pain and discomfort Richard must have been in, for quite some time.

Losing Richard has devastated his family, leaving a void that can never be filled. Our grief has been compounded by the extent to which we have had to fight for thorough investigations and sufficient recognition of the need to improve practice in this area. Shouldn’t the death of an otherwise healthy 33-year-old with constipation raise serious alarm bells?

Another lady with learning disabilities died in Suffolk with constipation six months after Richard. I will always wonder whether a timely investigation and service improvements after Richard’s death could have saved her.

The supports that Richard needed to manage his bowel care were actually quite basic. He was surrounded by support workers and professionals but his needs weren’t met and he died unexpectedly with preventable and treatable symptoms. His constipation wasn’t even mentioned in his hospital passport or Social Services' Community Care Assessment! Families trust professionals and care providers to meet their family members’ care needs, yet Richard’s support workers had stopped using bowel charts and involving the district nurse, without letting us know.

Slight changes to practice by staff in various roles would have ensured good bowel management. It is hard to understand why this didn’t happen but I suspect that it reflects a combination of ‘poo aversion’ (it isn’t glamorous!), diffused responsibility towards physical health amongst professionals, diagnostic overshadowing, health inequalities and institutional discrimination, all of which are experienced too often by people with learning disabilities. Everybody thought somebody else would hold Richard’s constipation in mind and, sadly, nobody did. The Serious Case Review report highlights how Richard’s care provider, GP, psychiatrist, social workers and hospital staff could all have done more to help Richard.

As well as being Richard’s sister, I am also a Senior Clinical Psychologist employed in a mental health service for people with learning disabilities. I am regularly shocked by the limited awareness of constipation risk and indeed of the health inequalities experienced more generally by people with learning disabilities, even amongst learning disability professionals. There is too often a diffusion of responsibility, wherein staff in various roles think ‘physical health’ is someone else’s job. This needs to change! Individual practitioners have the potential to make big differences to the lives, the health and indeed the survival of people with learning disabilities, through small changes to their practice.

I hope that this report and Richard’s story inspire support workers and professionals to adjust their practice, to speak up and advocate when others need to do the same and to implement timely practice changes when service limitations become apparent. Working proactively, flexibly and responsively with the ‘whole person’ should help to prevent further tragedies.

 

Comments on Richard’s story: unmanaged constipation in people with learning disabilities

  1. The link to saving lives is communication with the next of kin, the people who know their loved ones best of all. The assumption by professionals that they know best and that all families are not involved and don't want to be bothered is why people are dying of deaths by indifference. The cases I'm aware of were all avoidable deaths where next of kin know far more about their relative than a support worker left to manage crisis situations. The law must be always that families must be called immediately when a person in care displays unusual challenging behaviour or is unwell.

    Jonna Rasmussen 26 October 2016
  2. Thankyou for this - my brother is Down syndrome and suffers with constiiation which we have to monitor being very difficult as unless we catch my brother in the toilet he is unable to let us know - the medicine doesn't work the only thing we have found is plenty of fluid and sprouts he has had two stints in hospital with last one taking 3 days for him to pass movement and that was him having regular Medicine the only time we know otherwise is he points to his side

    Wendy Wookey 26 October 2016
  3. My son suffers with his bowels and has constipation and has sickness also. His anxiety issues do not help. I have constantly made the GP aware and consultants and this is an ongoing issue. He has recently been in hospital admitted with gastroenteritis which caused dehydration and low anaemia levels. I feel because of his learning disabilities and autism issues they do not relate to there need and I find it is a constant battle to get this addressed.

    Dorothy Jump 27 October 2016
  4. My son has always had problems with constipation and also denies that he has a bowel movement .Having Autism and mild learning disability doesnt help the situation so its a matter of observing him and being aware when his mood changes that its time for medical intervention .Mild laxitives regularly or dietary dont seem to prevent his constipation.Been said that its possible he doesnt respond to the urge to go and avoids having a bowel action for as long as he can ( often 7 to 10 days is often normal for him ) As a nurse myself cant not imagine how this young man could have been neglected by carers when its basic care to monitor their bowel movements

    Kathy John 27 October 2016
  5. 39 year old daughter, with physical and learning disabilities, suffers badly. I keep a note of all BM and monitor accordingly. Not one other health professional/ Care placement, was even slightly interested...

    Linda Siddiqui 28 October 2016
  6. My heart goes out to you with sadness. I have a Downs brother who displays irritable bowel syndrome symptoms but is undiagnosed. He is in his early 50s and I'm constantly battling between meds for constipation and diarrhoea.
    I also have an adopted 4yr old with parkinsonism dystonia and global function delay who has been admitted to hospital twice in one yr for aspirating feaces due to constipation and both times were on coming home after being in a respite centre, hence I now don't get respite care because I scared of putting him back in that position.

    Maureen

    Maureen Paternoster 28 October 2016
  7. Thank you for this!!! My son only 7 with autism, and significant developmental delay suffers severely from constipation, the longest being 22 days without going. I will make sure that mamma bear is on the case as he gets older xxxx

    Siobhan Bishop 01 November 2016
  8. Sending my condolences. This is terribly sad. More awareness and openness needed.

    Colinette Ryder 01 November 2016
  9. Dr Graham Clayden, at St Thomas' Hospital, London had a clinic for this specific problem in the early 2000s. My daughter had treatment and subsequent medication and management. Not sure if he is still there, but I'm sure there is still a clinic. Parents, ask for a referral! Medication and management is then on the care plan and can not be ignored.

    Fiona Johnston 01 March 2017

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