Page 16 - Community Living Magazine 33-4

first person
A young life cut short

Sheila Handley tells the story of the death of her 33-year-old
son Richard, why it should never have happened and her fight
for others in his memory

his is a journey… a journey through constipation care needed. He had the
a life lived, a death that could have right diet and exercise and bowel charts
Tbeen prevented and the many were kept. Practice and communication
lessons yet to be learned. were good. The medication regimen kept
It all began when I was 28. Motherhood him on an even keel most of the time.
beckoned. Richard, my first child, was Richard began to enjoy life again.
born, followed fairly closely by my two In 2010, the care home changed to
girls. Richard, who had Down’s syndrome, supported living. Richard signed a tenancy
thoroughly enjoyed all the usual activities agreement despite having no proper
of family life. I have so many fond understanding of what it meant. Families
memories of his path through childhood. were reassured that, while changes would
Constipation was the only stumbling affect administrative and financial Richard moved to an ATU to monitor his
block. From birth, he was diagnosed with matters, care would remain the same. mental health. He was already on a
probable Hirschsprung’s disease. His daily However, unbeknown to me, changes collision course with disaster. He was
routine needed exercise, laxatives, a were made to his care; bowel charts ceased taken immediately to A&E, admitted and,
high-fibre diet, plenty of fluids and and bowel monitoring became haphazard. I the next day, 10kg of faeces was removed
stretching games every evening to help raised concerns about aspects of the care from his bowel. However, his abdomen
him empty his bowels. and was told: “Richard has the same right remained huge despite passing further
When he turned 18, the road became as everyone else to make unwise choices.” vast quantities of faeces.
rockier. Richard suffered mental health Junior doctors did not follow the protocol
problems. The friendly, cheerful side of Making unsafe choices based on the MEWS score (an early
his nature faded and he lost interest in Richard quickly learned he could say “no” warning scoring tool used to help clinicians
things he had previously enjoyed. to a variety of things – cleaning teeth, identify deteriorating patients) derived
He was eventually diagnosed with a bathing, cutting toenails, eating a high- from vital signs. Senior staff were not
schizoaffective disorder. There were times fibre diet, being monitored when pooing... called; Richard did not receive the level of
when he was very withdrawn and he was The road had become a quagmire, making care needed. The interventions that could
sometimes aggressive. This was very the journey unsafe. have saved his life were not provided.
worrying because he was suffering. From Easter 2012, Richard slipped away. When the alarm call eventually went
There followed a very bumpy period He withdrew from most activities and was out, it was too late for Richard. He went
when Richard was in respite care. Regular very unwell. It was viewed entirely into cardiac arrest and died. Yes, in 21st
manual evacuations were needed for through the lens of mental health. The GP century Britain, a 33-year-old man died
constipation. He moved to an assessment and psychiatrist did not consider a from constipation. He received poor care
and treatment unit (ATU) to have his physical cause despite the known link from every single agency involved and
needs monitored and assessed. The between constipation and poor mental lost his life. His journey had ended.
downside? it was about 30 miles health and even though his medications I shall never forget that moment when, in
from home. had constipating side-effects. the early hours, standing in a hospital ward,
A comprehensive statement of health In November 2012, the psychiatrist I was told my son was dead. I couldn’t take
needs produced by the unit detailed the raised concerns about the hardness and it in. I wailed like a wounded animal. A
care needed to keep him safe and well distension of Richard’s abdomen. A nurse repeatedly told me that I had to
and a residential placement was trainee GP prescribed a concentrated “accept that Richard’s time had come”.
proposed. I was tortured by the anguish dose of laxatives. What? From constipation? He had died.
of Richard leaving home and by The calling of an inquest filled me with
worry about handing his care hope that the many questions
to others. However, it seemed surrounding Richard’s death would be
to be the only route. answered. Five months later, a meeting
The accommodation was was held to discuss the outcome of the
in a six-place, purpose-built hospital investigation, before an inquest
bungalow, only five minutes being timetabled.
from home. This was beyond my The investigation was limited and the
wildest dreams. conclusions and actions based on it
The road became smoother. weak. The apparent aim was to
Staff worked with us, learning minimise the part the hospital played in
from our 18 years’ experience Richard’s death. It did not answer our
and carefully following the questions. Little did I realise but a whole

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