It’s hard to know where to start with the conclusion of Dr Peter Harrowing at Avon Coroner’s Court yesterday.
The inquest of Bristol teenager Oliver McGowan, concluded on a bright summer’s day in a beautiful, leafy area of Greater Bristol. But, the findings sent chilling shock waves throughout the autism community in the city, travelling far across the UK.
The inquest concluded that the care leading to 18 year old Oliver’s death was “appropriate”, despite his vocal parents making it clear that their son was not to be given the antipsychotic Olanzapine due to the way his body reacted to the drug on previous occasions.
Oliver McGowan, described as a ‘natural leader’ with a ‘can do’ attitude, had cerebral palsy, epilepsy and autism and had been receiving hospital treatment for partial seizures.
He died in Southmead Hospital on 11 November 2016 due to brain injury caused by seizures and Neuroleptic Malignant Syndrome (NMS) triggered by an adverse reaction to Olanzapine.
Oliver’s family had reiterated time and time again that their son should not be given anti-psychotic medication. Even though this drug was administered against Oliver’s wishes and his family’s wishes, the McGowan’s were horrified to hear Dr Monica Mohan who prescribed the fatal does say during the inquest ‘I would do it again’, even though she had said that the family were ‘right all along’.
This is Oliver McGowan’s story, one that he did not live to tell. It is also the story of his parents Paula and Thomas McGowan, who have pushed so hard for it to be heard, pushed throughout their devastating bereavement for the injustice to be in challenged in the public eye.
Yesterday, they did not get that justice, but Oliver’s story will live on because it affects the families of everyone who has a disability, and a story that could just as easily happen to them.
Speaking outside the inquest, Thomas McGowan and his family said: “We are extremely disappointed by the Coroner’s conclusion. We found the inquest process to be frustrating and disheartening, with North Bristol NHS Trust adopting a defensive approach and the coroner being ferociously protective of the doctors who treated Oliver.
“We remain adamant that Oliver would not have died if he had not been administered the Olanzapine, which we expressly forbade, that the coroner found triggered the NMS, a significant contributory factor to his death.”
NHS England already recognises that the over medication of psychotropic drugs to people with a learning disability or autism is a problem. Their national STOMP project stands for stopping over medication of people with a learning disability, autism or both with psychotropic medicines.
One of the campaign’s aims is to ‘make sure doctors and other health professionals involve people, families and support staff in decisions about medicines’. They state that psychotropic medicines can cause problems if people take them for too long, too high a dose, or take them for the wrong reason. This can cause side effects including ‘serious problems with physical health’.
STOMP also worries that psychotropic drugs are ‘given to people because their behaviour is seen as challenging’. They have found that people with a learning disability, autism or both are more likely to be given these medicines than other people.
As well as the administration of the drug, one that NICE states in guidelines has the rare side effect of potentially fatal neuroleptic malignant syndrome, Oliver’s experience from the moment he was taken to hospital by ambulance for a simple partial seizure was horrific.
Three police officers accompanied the teenager, at times using physical restraint. Oliver was surrounded by large groups of people including police, nursing staff, hospital security and doctors. Paula McGowan described the scene in hospital as several people all talking to Oliver at once whilst he was in and out of seizure.
This would be a distressing situation for any teenager, but for this to happen to a person with autism is truly horrific. People with autism experience the world differently to others. Some people with autism also have co-morbid conditions, which can include mental health difficulties, co-ordination difficulties or learning disabilities.
Crucially, autistic people have difficulties with social communication and the interpretation of language. They will require calm communication in a quiet environment with time to process information or questions before giving a response. Autistic people may struggle to understand the intentions of others and become quickly overloaded by groups of people. Autism comes with sensory processing difficulties. That means on top of an anxiety inducing situation exacerbated by being surrounded by groups of people asking questions without being given time to process the information, bright lights, loud sounds, humming equipment, uncomfortable beds, light touch, heavy touch, in fact, contact of any kind can be painful and all lead to an overwhelming build up causing a meltdown.
A meltdown is a natural response to overwhelming information being bombarded at the body. It can manifest with what appears to be a loss of behaviour such as a raised voice, shouting, rocking, self-harm, hitting things, lying on the floor, lashing out or becoming aggressive. In this situation people need to stop. They need to stop questions. They need to give space. They need to minimise the amount of information the autistic person is receiving. They need to make sure that the person is protected from the intrusion of others.
Thomas McGowan continuing at Flax Bourton said: “It is clear from the evidence that no reasonable adjustments were made for Oliver in A&E on his arrival at Southmead Hospital. We believe this environment heightened his anxiety and was not appropriate for a teenager with autism and a learning disability.”
Oliver had a hospital passport. This is something parents can create themselves to help people with learning disabilities bridge communication between themselves and hospital staff. It will include information relevant to their specific disability. This is really important with conditions such as autism, one diagnostic label which manifests in so many different ways. There really was no excuse for security, police and staff to overwhelm Oliver in a counterproductive and discriminatory way.
Oliver had been able to state at Southmead that he did not want antipsychotic drugs, his parents had told doctors not to administer Olanzapine, it was written in his notes alongside allergies and all doctors treating Oliver were made aware through communications that he was allergic to all antipsychotics.
The National Autistic Society (NAS) said of the outcome: ‘The inquest highlights serious issues. Firstly, autistic people are still being overmedicated with powerful anti-psychotic drugs – even those without a mental health problem. This is often an issue that’s talked about in terms of people with a learning disability yet it’s vital that we also recognise the unique experiences and support needs of autistic people.
‘Secondly, autistic people and families are experts in their own autism yet we continue to hear stories about professionals not listening. This needs to change and improving knowledge of autism across health and social care staff is an important first step.
‘Oliver’s death is a tragedy. We must all do all we can to give other autistic people the understanding and support they so desperately need, so we can make sure nothing like this ever happens again.’
NAS said they would be writing to North Bristol NHS Trust for clarification about the ‘precise steps’ they will be taking to ‘improve the care and support for autistic people in their care’.
The difficulties with NAS’ intervention is that Oliver already had a hospital passport. He was able to state to doctors that he did not want Olanzapine. His parents continuously said he must not have Olanzapine. Records show that this was clearly logged in his notes.
His family said: “We sadly still consider that the doctors who treated Oliver were arrogant and dismissive of Oliver’s particular needs and we are therefore distressed and concerned that the coroner has made no recommendations to avoid future deaths.”
Whilst there is a clear lack of reasonable adjustments in place for people with autism admitted to Southmead Hospital – and our personal experience as parents at Chopsy Bristol also finds recent highly questionable processes at Bristol Children’s Hospital – it comes down to personal responsibility. There are many doctors out there who are wonderful. They listen, they are professional, they don’t judge, they make notes, they don’t have to ask what autism is.
But Oliver’s family found what all autism families are likely to encounter at some point. The ‘arrogant’ ones. The ones that know best. The ones that don’t listen to the wishes of the patient or family and dismiss their first hand knowledge of their child.
The Royal College of Paediatrics and Child Health, developed a framework in 2016, providing guidance about recognising and responding to children at risk of deterioration. One of the core elements was working as a partnership both with patients and their families.
NHS Improvement Re-ACT the Respond to Ailing Children Tool, also says that ‘often the concerns of parents are not heeded or parents are not equipped of confident to raise their fears.’
Our personal experiences as a family at Bristol Children’s Hospital, the other major hospital in Bristol has been mixed. We’ve met the great doctors. And we’ve certainly met the ‘arrogant’ ones. The one who wouldn’t be told when it came to presenting information in a different way because the child in question couldn’t process it due to their autism.
The fact the autism hadn’t been put on their notes. Then another two times having the same information being presented in the same way despite being told the child in question has autism and does not understand this.
And my forever favourite ‘arrogant hospital doctor moment’ came when the child in question was deteriorating, a full body rash had developed amongst other symptoms but the doctor in question tried to discharge the patient. When pointing out the deteriorating symptoms, rash and swellings, the doctor said ‘yes that is unusual’.
It was at that point my mind turned to Benjamin Condon, a baby who had died at Bristol Children’s Hospital in 2015 after a failure to give antibiotics. At the child death review meeting attended by Benjamin’s parents and the trust staff, an incriminating discussion between clinicians during a break was captured on recording equipment with staff also caught on the audio trying to delete it. They cocked up and tried to cover it up.
As a parent of a child too ill to talk, too ill to move, with further sepsis symptoms developing and being addressed by the most condescending doctor I had ever met, I wasn’t leaving. I remembered Benjamin Condon, a tiny baby who died several years ago but not forgotten.
And people will remember Oliver McGowan in the same way. Oliver should never have died like this. He was let down by the hospital for a failure to implement any reasonable adjustments. He was let down by the administering of Olanzapine which both Oliver and his parents vehemently objected to. Perhaps most offensively, in the face of the evidence at the coroners court, Dr Monica Mohan said she would do it again.
But no, we owe it to Oliver to remember him. To remember him each time we meet a Dr Monica Mohan. We must remember him and never let this happen again.
Southmead Hospital and Bristol Royal Hospital for Children must make sure this never happens again. Reasonable adjustments for children and adults with disabilities must be made. Every single member of staff from security to arrogant doctors must have disability and autism awareness training. There must be protocol put in place from the second a child with autism arrives at A&E and is admitted. Ask if there is a disability, ask what that means and what that person needs. And write autism on the bloody notes if it’s not already there.
Oliver’s family were supported by INQUEST members Bellamy Forde of McMillan Williams Solicitors and Anthony Metzer of Goldsmiths Chambers.
INQUEST director Deborah Coles said: “It should not be left to grieving families to fight for answers and the necessary scrutiny of systemic failings in the care of learning disabled people. As a society we should all be grateful to families like Oliver’s, who have worked tirelessly for accountability and learning so that future deaths are prevented. Unlike the State whose legal representation at the inquest is paid for by the public purse, Oliver’s family, like many others, were denied funding. They were denied a more thorough enquiry, by way of an article two inquest or jury, despite the best efforts of their legal team.
Evidence at the inquest showed that Oliver’s family were ignored by professionals responsible for care, a familiar pattern we see in our work on state related deaths. We must not let them be ignored now. Systemic and cultural change can only happen when these deaths receive the scrutiny they deserve. This inquest has shone a light on the over medication of learning disabled people, which is a widespread issue that must be addressed to stop yet more preventable deaths.”
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