Page 17 - Community Living Magazine 33-4

first person

new journey was beginning – a journey
both arduous and draining.
Comprehensive complaints were
submitted to five agencies involved in
Richard’s care. I naively thought we would
sit with them, explore what went wrong,
agree potential changes and so gain the
comfort of knowing that others would not
suffer as Richard did.
A serious case review (SCR) was
initiated a year after Richard’s death.
Complaints were put on hold. The SCR
dragged slowly on, eventually reporting in
October 2015, nearly three years after his
death. There was no meaningful family
involvement despite our overarching
knowledge of events; agencies could
cherry-pick from the information
submitted. Fortunately, we successfully
argued for a sight of the draft report and
were able to push things that would not or more research; all the lessons are learning disability and complex needs to
otherwise have surfaced. there. It just needs the will to turn them have a named care coordinator to review
Finally, in early 2018, a lengthy inquest into action to prevent suffering and health needs and ensure that information
was held. Surely the journey’s end was in save lives is shared between professionals
sight? I listened to barristers and a QC ● Working with a small group of bereaved and services.
crafting a case to show that the care given parents, guided and led by Noelle The coroner concluded that having
had not caused problems. It did not seem Blackman, chief executive of Respond someone to oversee and coordinate care
to matter that the SCR report and the (https://respond.org.uk) to produce might have prevented the development of
complaint responses produced by the resources for NHS England for LeDeR the extreme situation that led to Richard’s
agencies had seemed to say otherwise. reviewers and families hospitalisation. This is not a new idea. It
The scope was wide but, despite the was proposed in the CIPOLD (Confidential
gross failings and missed opportunities, Inquiry into Premature Deaths of People
the final conclusion was not neglect; I hear about “lessons learned” with Learning Disabilities) report in 2013
this was because it was not known what after every premature death. and included locally in the Suffolk Joint
the outcome would have been had the Learning Disability Strategy 2015-20.
failings not happened and opportunities This is nonsense – the deaths In February this year, the government
not been missed. are continuing response to the third annual LeDeR
I shall never understand this. If at least Programme annual report in May 2019
one agency had done a better job, Richard “recognises the importance of care
would not have ended up in hospital coordination and information sharing to
receiving care that fell below the level ● Being a member of an NHS England and improve outcomes”. An evidence review
that the hospital chief executive expected RightCare Pathways working group to of care coordination will report in summer
his hospital to provide. produce resources about constipation 2020. It will inform guidance on how care
care for GPs and families coordination is delivered across health
Action, not more research ● Advising on the content of an easy-read and social care settings. Nearly eight years
So my own journey continues. I remain My Poo record booklet to help people after Richard died, a journey is being
passionate about turning the so-called and their carers understand, monitor and made – but at snail’s pace.
“lessons learned” from Richard’s death manage bowels to avoid constipation. It is widely known that people with a
into actions that make death from poorly Where has this journey taken me? I learning disability have a life expectancy
monitored and managed constipation a know Richard’s Story has reverberated significantly shorter than those in the
thing of the past. across the land and that many have taken general population. Richard died aged 33; I
Since May 2018, I’ve been able to action to improve constipation care. could name many others. I hear of “lessons
campaign on a number of fronts: Resources have been produced, people learned” after every premature death; this
● Telling “Richard’s Story” at eight have received training and “poo” is far is nonsense – the deaths continue.
conferences; several more are in the more widely spoken about. It takes too long for lessons to
pipeline but are now on hold. The I’ve been lucky to meet many wonderful become actions that will save lives.
audiences are care providers, GPs, people who are committed to bringing Recommendations must be acted upon
mental health nurses, carers, LeDeR about change – people who genuinely care far more quickly. The roll-out of care
(Learning Disability Mortality Review) about the lives of people with a learning coordinators could turn things on their
programme managers and reviewers, disability. However, the journey is not yet head, making lives healthier and happier,
social workers… I present a powerful complete because premature deaths from preventing premature deaths and making
story in the hope that those who hear poorly managed constipation still occur. investigations redundant.
will be galvanised into making change A widely publicised recommendation How marvellous if this particular
happen. It doesn’t need rocket science from Richard’s SCR was for adults with a journey could end. n

www.cl-initiatives.co.uk Community Living Vol 33 No 4 | Summer 2020 17