Josanne, aged 29, embracing life at St Elizabeth's Centre in Hertfordshire, 2015
Sometimes it’s the little things that make the biggest difference. I once came back from dropping my child at playgroup to find that I couldn’t get into my house. I put the key in the lock but when I tried to turn it it wouldn’t move. Jammed. Stuck. Locked out. After enlisting the help of a locksmith, it transpired that a tiny millimetre length of metal had broken off the mechanism. The littlest thing stopped the whole thing from working. A millimetre away from getting into my house, yet wholly locked out.
Little things can be so important. Take, for example, the Little Blue Cup campaign launched in recent months. A 13 year old autistic boy with severe learning disabilities had used a blue sippy cup since he was two, and wouldn’t drink from anything else. His father managed to find a replacement from a friend when the first cup wore out. But as this second cup began deteriorating and efforts to get him to drink from other cups - however similar - failed, they grew increasingly concerned. Without that blue sippy cup he would become dehydrated and had already spent time in hospital.
The cup was discontinued, so in a desperate plea online via Twitter, his dad asked if anyone could find and send them these little blue cups. The response was unexpected and truly heart-warming: from viral re-tweets to offers of cups, to the company themselves successfully finding the old mould and producing a lifetime’s supply of blue sippy cups for him!
I like this story, not only for its happy ending, but for the success of a parent fighting for their child, understanding him totally, knowing what’s needed and communicating it successfully to people who listen and respond. Little things, perhaps, making a big difference.
Knowing and being known was important to Josanne.
Having grown up with my sister, Josanne, who had severe learning disabilities, I can appreciate the fine line between things being alright and things causing distress. Little things made a big difference. Josanne loved the little details. She used to like to know where people were, and would run through the members of the family in turn saying where they should be and what they would be doing. Knowing and being known was important to her. Knowing the little things formed the depth of her relationship with others and enabled the key to turn in the lock.
Josanne had severe learning disabilities and intractable epilepsy from infancy. She had been admitted to hospital several times in the past when she experienced clusters of seizures that wouldn’t stop. Sadly her time in hospital was often extended because she didn’t get the medications she needed at the correct times, or she wasn’t monitored closely enough, and she deteriorated enough to require intensive care.
One of these admissions resulted in paralysis, another in transfer to the leading London neurological hospital. It was during the latter crisis that she was prescribed a newly-licensed drug, which wonderfully caused a termination in seizures for the last two years of her life, and we saw her flourish.
Josanne had a good quality of life, despite her paralysis and learning disabilities. She had moved to St Elizabeth’s Centre in Hertfordshire aged 19, and had lived there happily for 12 years. She was a character and always secured the affections of staff and carers, even if they had heard her loud rendition of “Happy Birthday” for the umpteenth time that day (and it probably wasn’t anybody’s birthday)! There is a nursing unit on site, and specialist epilepsy nurses cared brilliantly for her. Unless she needed treatment that she could only get in hospital, she got all the care she needed there.
So when Josanne needed to go to hospital in January 2017 for a routine PEG replacement procedure, having removed her old one too many times, we weren’t particularly worried that she would suffer further setbacks; she wasn’t going into hospital ill, she was going in to prevent future illness. The feeding tube known as a PEG (percutaneous endoscopic gastrostomy) was the means of securing her essential medication and nutrition intake. A small thing, perhaps, but it made all the difference.
Josanne’s history showed that if she didn’t get her medication reliably she was likely to experience seizures and compounding complications if she entered status epilepsy (where epileptic fits follow one another without recovery of consciousness between), but the procedure was repeatedly delayed, which meant she wasn’t getting her essential medications. My Mum and St Elizabeth’s staff raised concerns, emphasising the severity of potential outcomes if the procedure didn’t happen imminently. But the hospital’s realisation came too late. Josanne had missed too many doses of medication, started having seizures, and quickly became too ill to have the procedure. Her seizures worsened in frequency and severity, and, as those who knew her best had warned, she developed aspiration pneumonia, and tragically died. She was 31.
The coroner concluded at an inquest held in November 2017 that Josanne died of natural causes, contributed to by neglect, with the hospital demonstrating serious failings in her care.
At 15 Josanne lived at home and attended a special school in Cambridge.
The fact it was so clear cut is a consolation. The hospital didn’t try to hide their failings or apportion blame elsewhere, but instead produced a 22-page Serious Incident Report that gave appalling detail to the circumstances surrounding Josanne’s death. We realise this is rarely the case, and many families supported by INQUEST are not so fortunate and have far bigger battles in their quest for justice.
There are many factors I could talk about - the high rate of mortality amongst learning disabled patients, poor understanding of and adherence to the Mental Capacity Act, communication issues between those who know the patient best and the medical staff, or, more positively, the difference it makes when an organisation is willing to admit mistakes and make changes to prevent similar tragedies occurring. But these are by no means little things, and deserve a greater depth of discussion than I can give here.
Perhaps the littlest thing that could have made the biggest difference was in the process of flagging vulnerable patients on admission. When Josanne was admitted to hospital the Learning Disabilities flag on the patient information system wasn’t activated. Normally it would be automatic, but, despite having lived in Hertfordshire for 12 years and having a Hertfordshire GP, Josanne was not registered on the Local Authority’s patient list as having Learning Disabilities because Josanne was originally from Cambridgeshire and her previous hospital admissions had been to the nearby hospital in Essex.
A little thing. Without it the door to essential medical care didn’t open.Why didn’t a Learning Disability flag get passed from one county to the next? Why didn’t a GP’s patient information system link into the hospital’s patient information system? And, given the severity of Josanne’s learning disability, why didn’t it occur to staff to check the flag had been activated? This would have triggered an alert to the specialist Learning Disabilities Nurse, who has greater understanding of the potential issues faced by vulnerable patients and can advocate for them. But the Learning Disabilities Nurse wasn’t even aware that Josanne was in hospital until 13 days into her stay, by which time it was too late.
It may just have taken a little thing, but without it the mechanism didn’t work properly, the door to essential medical care didn’t open. Josanne was instead locked in a waiting room of neglect until she died.
Whilst the hospital have frankly examined their failings and have put things in place to prevent it happening again, my concern is that other hospitals could easily make the same mistakes if learning from this incident isn’t shared. If little things like Learning Disabilities flags aren’t activated somewhere else another time, then this could happen again.
The wonderful story of the Little Blue Cup continues. Requests for little things that make a big difference to learning disabled people’s lives are now shared on a website and items are united with those who need them. How wonderful it would be if little needs in bigger scenarios could also be met! If healthcare professionals could make seemingly small changes to how they treat and assess vulnerable patients, it could make the biggest difference and unlock the door to saving many lives.
The charity INQUEST provides free and independent advice to bereaved people following a death in state care or detention in England and Wales. This piece, edited by Ayesha Carmouche, is the first in a series of collaborations between families, INQUEST and Shine A Light.