Our response following the inquest into the death of Sally Lewis

“The way we supported Sally Lewis in respect of her constipation simply wasn’t good enough. Her death, in the words of the coroner, was contributed to by neglect.  We could and should have done better. For that I am truly sorry and would like to apologise again to Sally’s family.

Our last CEO previously set out what had gone wrong, based upon our understanding at the time. The inquest has undertaken a deeper examination of the circumstances surrounding Sally’s death; it is clear that our processes, systems, management oversight and day-to-day support for Sally’s bowel management were not what they should have been.

That was almost six years ago and, in that time, a huge amount of organisational energy has gone into making things better. In the second half of this blog I am going to talk about what is different at Dimensions now and, just possibly, what others can learn from our experiences. But first, I want to talk about Sally, who is the most important person in all of this:

We supported Sally for 20 years. Sally was known to be at risk of constipation. Her medical records and prescriptions made that clear. And yet bowel monitoring was not done consistently and robustly.  Yes, there were some ticks put into some boxes but not routinely, and whilst our colleagues verbally discussed Sally’s bowel movements between them, that wasn’t enough to make sure they, or Dimensions’ management, understood what was happening.  We did not make our expectations to colleagues sufficiently clear in terms of recording.  Furthermore, our systems and processes to check the quality of records and support weren’t delivered effectively.  And this meant that nobody put all the pieces together. When Sally died, no-one around her realised she was constipated. And as a result, she hadn’t been receiving her PRN (“as needed”) medicine.

From the start we have said that one of the key issues here is how to balance individual dignity, privacy and rights with safety.  Sally found it difficult for people to accompany her to the bathroom and this could trigger significant behaviours of distress for her.  This meant that we couldn’t monitor how often she opened her bowels and the consistency, size and shape of her faeces. That issue stands but the key issue here was our acceptance of this. We should have raised this as a risk with her GP, the care manager, her family and with all those around her so we could work together to identify a way forward. I don’t think we did enough to help Sally herself understand why it was so important to be accompanied to the loo. And I don’t think we did enough to ensure our colleagues supporting her understood clearly the risks associated with long term constipation.

I would like to turn to what is different at Dimensions now. Sally’s death has had a profound effect upon our organisation, and we didn’t wait for the inquest to identify the lessons we needed to learn, although following the Coroner’s findings we will reflect and consider carefully if there is any more we can do. We acted swiftly to make the necessary changes. We now have mandatory training for everyone supporting a person at known risk of constipation. We have a Bowel Toolkit which includes bowel management plans, improved bowel recording charts, a constipation screening and referral tool, guidance on how to prepare for a constipation appointment and more.  It is an organisational requirement that all people we support are regularly screened for constipation and bowel health. Specialist advice is available from our Health and Wellbeing Lead.

Our electronic daily records system which is now fully embedded means it is much easier for managers to scrutinise all records relating to the people we support.  And families also have access to these electronic records at any time from their own homes.  There are, simply, many more pairs of eyes able to see what is going on.  And we know that partnership working with families and loved ones results in better outcomes for the people we support.

Constipation is now one of seven ‘Never Events’ at Dimensions. Never events are a well-known concept in the NHS. Quite simply it means that, with the right training, behaviours, systems and processes, an incident that carries a potential risk of harm, injury or death should never happen. Specifically, at Dimensions, we say that “No one should suffer any harm as a result of a failure to administer or monitor the medication prescribed, or to follow established processes, for the relief or avoidance of constipation.”  And we work to provide the right training and processes, and ensure the right behaviours, accordingly.

Our CQC registrations, previously held at Operations Director level, are now held by Locality Managers across our organisation to ensure that those directly responsible for the oversight of delivery of individual care and support are closer to the people we support. That’s a critical change; if any providers reading this have yet to make a similar change, I urge them to do so.

We have also undertaken a great deal of work externally to raise awareness of the risks and issues surrounding constipation for people with learning disabilities, to enable us and others to do everything possible to keep people at risk of constipation safe and well:

We produced an animation for our colleagues which has been used by the NHS, and this accessible book, funded by Dimensions and co-produced with Beyond Words.

Many colleagues have also devised extraordinarily creative ways of delivering what we continue to believe is a very important message, and one that we will continue to deliver. Sally’s inquest is an incredibly sad but important and timely reminder that we must always make sure support plans are clear, followed by our colleagues in how they support people, and that checks take place to ensure all those things are happening, whether that’s in relation to people’s bowels or any other areas of support.

I will end this by simply saying, to Sally’s family, I’m truly sorry.  Nothing can bring Sally back but I’m determined that we will continue to do all we can to minimise the risk of this ever happening to anyone else.”

Rachael Dodgson, Chief Executive, Dimensions