Why we must talk about constipation

In the week of an inquest into the death by faecal impaction of Richard Handley, a young man with learning disabilities, Dimensions, along with other providers, was challenged to speak up. So we will.

Our CEO, Steve Scown, blogs.

I am to talk candidly about constipation – a subject which is generally not spoken about much – and perhaps we all need to reflect on that.

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 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.

Since then we carried out an investigation into how we supported the person, and how our systems, policies and training had addressed the risk of severe constipation, and what the sector knows about it.

This is what we’ve learned:

It is estimated that up to half of people with learning disabilities are at risk of suffering from long term constipation. At Dimensions we now know the figure for people we support is slightly less – one in three. Almost all of them – 98% – are prescribed laxatives. Many of these people use a wheelchair.

If 98% of people with long term constipation supported by Dimensions are prescribed laxatives, I’m willing to bet the same is true across the sector. The care, and health, sectors’ general approach to constipation has not been to tackle lifestyle issues: diet, exercise, posture. It has been to medicate.

The individual who passed away did not use a wheelchair. She was a relatively independent person and would use the bathroom unsupported. There were no bowel charts or Bristol stool charts on her bathroom wall, as perhaps there might have been in the past, and rightly so.

She had taken laxatives for many years, apparently with no ill effect. She was supported by long term staff who knew her well and who I am in no doubt cared deeply for her.

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.

Someone died and so I’ve written this to present information other providers would do well to be acutely aware of; a relatively independent individual, rightly protective of her dignity, with few outward signs of illness or change in condition can become severely constipated and this can lead to a tragic conclusion.

Here is what I think it means:

1. We must not go back to the old days of regular soft soap enemas. Dignity has come a long way and we must always protect that. But we must find a balance for each individual between dignity and safety.
2. In the old days, however, the connection between constipation and complex needs, such as epilepsy and challenging behaviour, was widely understood. Has this understanding been lost somewhere along the line? At Dimensions we are making strenuous efforts to ensure our colleagues are aware of that connection.
3. Just as the STOMP programme is tackling unnecessary psychotropic medication, do we need a similar focus on long-term laxatives? Does long-term laxative use work? Does the body get used to the dose? Should we be far more challenging of repeat prescriptions of laxatives? Is there a role for the LEDER or STOMP-like programmes here?
4. The alternative to laxative is likely to be diet, exercise, posture and so on. These things may be important for people but they are less likely to be important to them. This raises the issue of choice and how you enable it in an informed way and prevent bad choices being made, which lead to bad outcomes or worse (a subject for a later blog perhaps?). We need to be having stronger conversations around support planning. We need to be using more principles of behaviour support, whether or not an individual displays challenging behaviour, to encourage behaviours that can create a virtuous circle of improved wellbeing.
5. For too long as a provider we have deferred to primary healthcare for dispensing health plans and prescriptions. I have been really pleased with our work around STOMP, particularly how we’ve helped inexperienced support workers challenge medics over their automatic re-prescribing – and how this has helped reduce psychotropic medication. This tells me providers can successfully challenge GPs and can help GPs be more ambitious for the person.
6. 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.

I cannot offer a 100% guarantee that no-one supported by Dimensions will die of faecal impaction in future. What I can offer is an absolute determination to do all we can to make sure it doesn’t happen again to anyone in our care – and our openness to share our learning and what we’ve done to improve our care and support with any provider who wants to know.

We are, as ever, trying to improve what we do and how we work. As this blog illustrates such improvement is needed – and it is complex and difficult – but it’s far too important to ignore or sidestep.

Clearly we are in no position to preach. But I do hope the above thoughts prompt more important conversations – amongst providers, healthcare professionals, families and colleagues – about constipation.

If you would like to share your thoughts with us, please email online@dimensions-uk.org. We will read and reply to emails sent to us.