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LeDeR investigation – an article by Paula and Tom McGowan 

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We are proud of our overseas Ambassador Paula McGowan fighting for justice for her son Oliver

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We would like to thank NHS England and NHS Improvement for commissioning this two phase Independent Review into Oliver McGowan’s treatment and death on 11 November 2016.

We worked with them to agree to the parameters of the Independent Review assisted by our lawyers Caron Heyes and Catriona Filmer of Fieldfisher LLP who advised variously on the format of the Review, the expert evidence needed, the application of the Mental Health Act, and who provided analysis of the documentation. We also thank Mencap, who gave unstinting support in our fight for this Independent Review to take place.

We are grateful to Fiona Ritchie andthe panel members involved in Oliver’s Independent Review and completion of his LeDeR investigation. They conducted a thorough review in their search to establish the truth and right to the concluding meeting took account of our history of what happened and our concerns. Fiona kept us fully apprised throughout the review and was open, honest and transparent throughout.

We have always known that Oliver’s death was avoidable. He was a healthy, fit teenage boy who walked into Southmead hospital having absence type seizures and left in the back of a Coroners van, headed for the local Mortuary.

It is our opinion that, Oliver died as a result of the combined ignorance and arrogance of Doctors who were treating him. Doctors who refused to listen to Oliver’s direct instructions and us, his parents, who knew him best, and who did not act in his Best Interests.

Oliver died due to a combination of prejudice, subconscious bias and diagnostic errors overshadowing treatment decisions by those caring for him. The medical system failed to understand how his autism, epilepsy and learning disability affected him and so their care failed him. His death was a direct consequence of doctors not  following The Mental Capacity Act, The Autism Act and the Human Rights Act; laws.

Oliver died from the combined failings of his doctors in firstly mismanaging the care he needed as an Autistic high functioning youth, secondly being administered Olanzapine against his and our expressed wishes, and thirdly by failings in the ITU to recognise the symptoms of Neuroleptic Malignant Syndrome and act aggressively to treat it.

As a result, his temperature rose to 42oC which caused his brain to swell so badly that it was bulging out the base of his skull. The lack of temperature control was a major contributing factor in him suffering irreversible brain damage. We note that this Independent Review does not mention this fact in either of their reports.

We are advocates of the LeDeR process and believe the NHS England/NHS Improvement must implement learning’s from Learning Disability Mortality Reviews far more seriously. It is not okay that a certain group of people are dying 25 years earlier than the rest of the general public simply due to inequality of health care, prejudice and subconscious bias from the very people who are meant to support and treat them.

On average 1200 learning disabled people are dying preventable deaths every year, simply due to inequality of health and social care.  Despite LeDeR and its findings, the numbers of deaths has not reduced and we must question why?

Oliver’s life was important. He was productive, playing football for England FA development squads; he was in training to become a future Paralympian. He had passed his GCSE and BTec exams at school and was attending College. Oliver had a right to a life, his life mattered.

We hope that NHS England/NHS Improvement will take the lessons identified from Oliver’s Independent Review Phase 1 and Phase 2 reports and not treat them as tokenistic, but treat them with the due diligence they deserve and act upon them in a meaningful way.

We are calling for NHS England/NHS Improvement to allocate a Senior named person to track and action all the recommendations independently of the current management of the UK LeDeR process. The lives of learning disabled people depend upon it.

Paula and Tom McGowan

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