Dying from constipation: Sally Lewis

On January 22 2018 I sat in Ipswich Coroners Court waiting for the start of Richard Handley’s inquest. What we heard in court over the weeks that followed was a horrific blow by blow account of how the care and support provided to Richard failed him. There were seven interested parties including his care provider, United Response, who did what they could to deflect taking responsibility for their failings both in evidence and at the conclusion. To quote Richard’s youngest sister, Emily:

Richard was entirely dependent on the health and social care system to exist, and now he doesn’t exist because his needs weren’t met, and we have to live with that for the rest of our lives.

The coroner, in his summing up and narrative verdict, criticised all the professionals involved in Richard’s care and support including the care provider, United Response, his GP, Suffolk County Council and their social workers, Richard’s psychiatrist, and the staff at Ipswich Hospital where there were gross failures to act and provide potentially life saving treatment. The detail of how Richard died from constipation is covered in this Guardian article by Amelia Hill.

In the days leading up to his death, the coroner stated that there were many opportunities to save Mr Handley. Instead, the court heard evidence that he was failed by everyone responsible for his care.

By the time Richard’s inquest concluded in February 2018 challenges had been made on social media to care providers to respond to what we were hearing in court.

The only provider who responded was Dimensions, their (then) CEO Steve Scown wrote this blog post in January 2018, Why we must talk about constipation. In it Steve says:

This has been be a challenging blog to write, it will be a difficult and distressing blog to read, and I anticipate it will prompt some people to be very critical. However, I think sharing learning with the intent of reducing risks to people is too important to ignore or side-step.

Last year an individual Dimensions had supported for over 20 years also died of faecal impaction. The coroner did not require an inquest. He noted that this was ‘quite common’ (not in Dimensions’ experience I would wish to offer) and that the impacted faeces could have been there for many years.

The individual that Steve is talking about is Sally Lewis, who died in October 2017. I’ll tell you a little more about Sally in a moment, but I’d like to keep the lens on Dimensions for just a little longer.

I’m not sure where to go with this statement about the coroner really. If care providers *genuinely* wished to learn what had gone wrong, and protect other people in their care, then of course they should be actively petitioning a coroner to hold an inquest when someone has unexpectedly died. It shouldn’t be left to bereaved family members to put in the leg work. Especially if the provider is of the view, as Steve said they are, that this is unusual and not ‘quite common’.

Steve continues in his blog with more comment on Sally’s death (the link is above, I’ll not repeat it all here). He said this about Julie and Sally’s family:

The person’s family was and are understandably upset and distressed. If it had been my son or my gran I would have been equally horrified.

Dimensions could and should have done better, and we have acknowledged this when we met the person’s family.

That’s quite the admission, I remember reading it at the time and thinking it was both brave and bold from Steve, I think I even commented on twitter that this felt like leadership and what a difference it would make if all care providers responded similarly.

Except, there are two sides to every story. Julie told me that she’d agreed that Steve could write about Sally providing she got to see the post before it was published, but she wasn’t shown it in advance.

In his blog Steve talked about an investigation conducted by Dimensions following Sally’s death, and what they’d learnt as a result of it. He then goes on to say:

Looking back, there may have been signs that we missed. For example, it seems we didn’t connect her occasional challenging behaviour to constipation. In the days leading up to her death her constipation didn’t seem to be affecting her. On the day she died she had what were considered to be normal bowel movements, she ate fish and chips and went for a walk in the park.

Indeed, she only showed signs of illness in the twelve hours before she died – and even then, there being a gastric bug going round in her house, her symptoms were ascribed to that.

Reading back this probably sounds a bit defensive, but if I wanted to avoid criticism and protect reputations I wouldn’t have written this blog.

Again Julie told me a different story, of raising her concerns with staff that Sally was increasingly withdrawn, that she’d lost her sparkle and wasn’t herself when she saw her at the home, or when Sally popped into Julie’s florist when she was out and about in town. It will be for the coroner at Sally’s inquest to decide what actually happened and how she came to die from a ruptured bowel on the sofa in her care home**.

Steve then offered six things that he thought it meant for Dimensions, the final of which was:

A theme is emerging from the current inquest around listening to families. Families know better than anyone when something is wrong. We know there is a real mix of good and less good practice between providers in this regard, and undoubtedly too much inconsistency within individual providers too. Do we have the right beliefs about working with families? Undoubtedly yes. Are we confident that these beliefs are being put into practice in every Dimensions service across the country? Less so. And we need to remember that many of the people we support don’t have a family anymore.

The current inquest he’s referring to is Richard Handley’s inquest, remembering at this point Dimensions apparently believed that there would be no inquest into Sally’s death. Steve finished his blog post by stating that while he couldn’t “100% guarantee that no-one supported by Dimensions will die of faecal impaction in future”, he offered absolute determination to ensure that never happened again. He said that he hoped that his blog post would prompt others to have important conversations about constipation, amongst providers, healthcare professionals, families and colleagues.

Richard’s inquest was only the second I’d live tweeted, but Danny Tozer’s inquest was tabled for a couple months later after he’d died in a Mencap care home, and I was in touch with a number of families whose learning disabled or autistic relatives had died premature, and often preventable deaths. At the time I remember feeling an immense sense of relief that Steve had posted this blog post, that someone in a provider was speaking out, that there were some ‘good guys’ out there who were prepared to take responsibility and who weren’t driven by reputation.

Now I wonder whether I was wholly naive, and just driven by a desperate wish that providers did care. Let me explain.

A few months earlier I’d received an email from a Dimensions staff member (and friend) asking if I wanted to support the development of what became Dying to Matter, a guide for families to support them getting answers when their learning disabled or autistic loved one has died. Initial discussions about the need for this had started when we walked the first JusticeforLB camino in October 2016. It felt good to be able to contribute to something positive.

When the guide launched Steve posted another blog post When things go wrong – how should organisations respond? In it he said:

Emotions for everyone directly involved in such tragedies are inevitably high. For those looking in from outside our understanding is limited to whatever is in the public domain. The recent ‘live tweeting’ about some of these events has been a very welcome development. More than ever before a bright spotlight is being shone on organisational behaviours and actions.

I remember feeling relieved, again, that now when I spoke to families, often newly bereaved and shell-shocked, in horror and disbelief, that I’d have something to offer them, a guide for them to help them secure answers. I also remember being comforted that Dimensions were very publicly stating that providers needed to take responsibility, and show leadership. In his blog when the guide was launched Steve said:

At the end of the day we’re a collection of human beings supporting other human beings. Sooner or later, someone we employ will do something really unwise and there will be another awful incident. And Dimensions may well be in the dock and under the spotlight.

In that event I hope that we engage quickly, openly, with humility and real humanity with the person’s family. I hope that we say sorry straight away. 

I can tell you from speaking with Julie that she feels they have fallen very short on that promise.

Some law firms seem to advocate a say nothing, admit nothing, couch everything in legalese, protect your vital interests, play the long-game approach. Prompted by these reflections and fears I recently convened a meeting with some of our legal advisors and our insurers to talk through with some of my Dimensions colleagues these fears and hopes.

I was pleased to learn the strength of their appreciation of the need to be candid, the need to express regret and say sorry. So I do believe not all law firms are the same – some understand what organisations like Dimensions want to achieve and how we want to behave. But – and for some readers I fear this will come across as too big and weasely a ‘but’ – as they explained, saying sorry is not necessarily the same thing as admitting liability. Why? Because as I’ve said above and as they confirmed only a legal process can determine the truth.

If the organisation does not believe it is at fault, of course it must defend itself in court. How an organisation develops its belief as to whether it was at fault and thus should acknowledge liability is a litmus test of its leadership. Has it listened to people without already having its conclusion written? Has it considered all of the facts and the expert opinion? Are its senior players prepared to be criticised? Is it prepared to be judged as not being good enough?

In September 2019 I received an email from Emily, Richard Handley’s sister, introducing me to Julie, Sally’s sister. When I first spoke to Julie over 3.5 years ago she told me that she’d had her request for an inquest refused three times, until the current coroner agreed to hold one, with the first pre-inquest review hearing taking place in September 2019.

Julie had contacted Mencap for help, as they ran a legal service that families could access. She’d been told that they couldn’t help her as they had a conflict of interest, because Dimensions financially supported the service. So many doors closed in bereaved families faces.


Sally’s inquest was tabled for July 2020 and I was all set to live tweet it, however it was put on hold, as CQC sought to prosecute Dimensions, and the registered manager Julie Campbell, over failings in Sally’s care. They were both charged under the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 relating to the alleged failure to provide safe care and treatment for a person in their care.

At a case management hearing in March 2021, Dimension’s barrister argued that the CQC were too late laying the charges against his client, arguing that they should be dismissed on a technicality. I don’t want to cover what developed over the two years that followed in detail here, but I will once Sally’s inquest is over.

What I’ll say now is that Sally’s inquest was put on hold, for two years, as Dimensions fought tooth and nail, to avoid a prosecution by the regulator, arguing on the basis of a technicality.

Is this Dimensions being prepared to be judged as not being good enough? Is this engaging with humility and humanity?

In February this year, the administrative court refused CQC’s application to pursue a judicial review to challenge the decision made the previous year, that they had made an error “in relation to the timing of the decision to prosecute”. So the prosecution of Dimensions and their registered manager came to an end.

The Senior Coroner for Worcestershire, David Reid, then listed Sally’s inquest to take place this month, it starts tomorrow. What I only realised many years later, whilst sat in a court room listening to a barrister acting for Dimensions arguing that CQC had “driven a coach and horses through the procedure set up in the coroner’s court” by bringing this prosecution out of time, was that Sally had died on 27 October 2017.

I don’t know what caused me to go back and check my emails, but less than 12 hours after Sally was found dead, it appears that Dimensions had given the go ahead for the group to work on the Dying to Matter guide. Maybe that was pure coincidence, or maybe we were all taken for a ride, by an organisation as driven by reputation as the many others that went before it. I honestly don’t know.

When the Dying to Matter guide was launched Steve Scown, the Dimensions CEO reflected on what bereaved families might think about his promises:

I fear some readers will by now be gnashing their teeth. I’m thinking of all those bereaved families who have been belittled by organisations and professionals. Who have been on the receiving end of legal questioning and who have come up against the seemingly limitless resources of big organisations. Who have fought for years for justice. Who have been ignored, misled, lied to. Who have had to fund high risk private prosecutions, and who have navigated the care and legal systems with tenacity and desperation. And what about all those families who haven’t quite made it? Who have eventually given up, their case whitewashed into history?

Sally Lewis’ family have come up against the seemingly limitless resources of Dimensions. They have fought for years for justice, five and a half years, her family are left desperately trying to fundraise to pay their legal fees… with tenacity and desperation, while Dimensions dip into the seemingly endless financial pot to pay for barristers to argue their corner, and dismiss and diminish Sally’s families concerns and attempt to delay, defend and frustrate their attempts to get answers.

I don’t know, maybe they were hoping they’d be one of those families who didn’t quite make it, who gave up, as their case was whitewashed into history.

It’s now 5.5 years since Sally died. She was just 55 and a very much loved daughter, sister, aunt and friend to many. Sally was loved beyond measure and is missed tremendously by her whole family.

Sally had learning disabilities and died in the care home in which she lived. She suffered from chronic constipation, and died following her bowel having burst. Reports investigating her death found that there were serious issues with her care and support meaning that her constipation was not properly monitored and managed. 

A safeguarding report found “Sally had a long standing, known history of constipation. It is evident that there was a clear failure by Dimensions in the management and monitoring of Sally’s bowel care, the outcome of which was catastrophic to Sally”.

Julie tells me that she can’t give up, that she has fought so hard and that they’ve had to trust the legal system, which has got them nowhere. She says that she’s been let down, just as Sally was let down.

Sally’s inquest has been postponed 5 times in total, but starts tomorrow at Worcestershire Coroner’s Court.

Julie hopes to finally get answers about what happened to Sally, so that she can actually grieve for her sister. I’ll be reporting daily on my blog, and once the inquest has concluded will say more about the failed criminal prosecution.

In the meantime if you have any spare change, Julie will be left with a huge legal bill once proceedings conclude without the help of crowdfunders, so please donate if you can, or share this post in the hope that others can support too. The estimate for legal fees is now at £24,000, which will barely register for Dimensions I’m sure, but is a huge amount for a bereaved family to raise. Thank you.

** At Sally’s inquest the coroner concluded that her death was contributed to by neglect and that she died as a result of faecal impaction, caused by chronic constipation.

Write a reply or comment

Your email address will not be published. Required fields are marked *