“Oliver’s story is heart-breaking. I wholeheartedly support Paula in her determination to make sure that no other family has to face what she has had to endure. She is truly an inspiration and a force of nature who rightly will not let things stay the same.
I am proud to be responsible for taking forward the Oliver McGowan Mandatory Training programme, and equally determined that through it all health and social care staff will receive training in learning disabilities and autism. This training must be developed and delivered hand in hand with those who have learning disabilities and autistic people – that way we will tackle bias and unconscious attitudes – and achieve the shift in understanding and practice that Paula so compellingly argues for.”
Helen Whately MP Minister of State (Minister for Care)
Oliver's death was a tragedy, but one that I hope will lead to lasting change. This is testament to his mother Paula's tireless campaigning and her petition for mandatory learning disability and autism training for all healthcare staff. The Government has listened, and acknowledged that we can do more to improve people's experiences of care.
We are consulting on plans to introduce mandatory training to ensure staff working across the NHS and social care are trained to make reasonable adjustments that can make a world of difference to outcomes for autistic people or those with learning disabilities.
Caroline Dinenage, Minister for Care 9 Jan 2018 - 13 Feb 2020
“Paula McGowan’s tireless campaigning in the name of her son, Oliver, and his premature death is truly inspirational. Paula has been through something no parent should ever have to face and yet has turned her experience into a force for good by campaigning to help others through the Oliver McGowan Mandatory Learning Disability and Autism training.
Oliver’s tragic death is one of far too many. At least 1,200 people with a learning disability die avoidably each year when timely access to good quality healthcare could have saved them. That is why the new mandatory training is such an important step forward. Mencap is proud to be working, alongside our partners, to develop the training and to improve attitudes and practice among health and care professionals towards people with a learning disability and autism. We now all need to work together to make this training a success, and, ultimately, to save lives.”
Edel Harris CEO Mencap
Oliver McGowan was a brilliant young man with a very bright future ahead of him.
The circumstances of Oliver’s death are deeply concerning.
It’s totally unacceptable that we have a situation where people with learning disabilities or who are autistic face worse health outcomes.
Paula McGowan’s tireless campaigning is an inspiration to so many, and a reminder that we all need to do what we can to fight for fairer outcomes.
I will continue to do my utmost to help deliver the changes which Oliver’s Campaign aims to bring about.
William Cowie Parliamentary Researcher for the Rt Hon Norman Lamb MP Copy Copy Copy
“I am proud to support Oliver’s campaign and secure better training for NHS staff treating autistic people and people with learning disabilities.
“Oliver’s tragic case has shown us what happens when clinical staff are not equipped with the knowledge to give the kind of care that autistic people, people with learning disabilities and their families ought to be able to expect.
“The NHS needs to do better and I will do everything I can in my role as Shadow Cabinet Minister for Mental Health and Social Care to make it aims a reality, so we can make sure deaths like Oliver’s never happen again.
Barbara Keeley MP, Shadow Cabinet Member for Mental Health and Social Care
I am a retired ED nurse, advisor to NHSE STOMP, which is a campaign to stop inappropriate prescribing of psychotropic medicines to autistic people and/or learning disabilities. A campaign close to my heart as I nearly lost my son due to inappropriate prescribing.
I first met Paula when she came to speak at the launch of our STOMP health care pledge event.
I sat and listened to Paula, sharing how inspiring, Oliver was and how he loved life. How Oliver was an outstanding sportsman and was to compete in the Special Olympics. How kind Oliver was and supportive of others who were less able than him.
Then the atmosphere in the room became low and heavy as Paula shared the circumstances that led to his death. Tears rolled down my cheeks, how staff seemed to disregard the family and administer psychotropic medicines against their wishes and previous medical advice.
I have had the pleasure of meeting Paula and Tom and watched his they have alchemised their grief, into a force to be reckoned with. Both have moved mountains in honour of their beautiful son Oliver, gone too soon. They have worked tirelessly to influence national policies, in hope, that even just one parent could be spared losing their loved one, a preventable death. No, Paula and Tom have gone even further and I have watched how they have turned tragedy into transformation, loss into legacy. Both have influenced the government to act on their petition for all health and social care staff receive mandatory training in autism and learning disabilities, reasonable adjustments, in order to reduce health inequalities and preventable deaths.
It seems Oliver died because he was given an antipsychotic, against his wishes and despite prior side effects Oliver died because staff did not understand autism. Oliver died because his voice and is parents voice wasnt listened to. Oliver died because he didn't have access to a specialised leaning disability nurse who could have advocated for the family and ensure their voice was listened to.
I urge you all to get behind OM campaign and stop this burning injustice.
I can only imagine the pain and sorrow Paula and Tom feel and I know they miss Oliver.
Hazel Griffiths Retired ED nurse, Advisor to NHSE STOMP Copy
“It’s absolutely unacceptable that people get poorer care just because they're learning disabled or autistic, and that some die earlier than they should as a result. Proper, specialist training in autism and learning disability awareness for all health and care professionals is vital, especially if it’s led by and involves learning disabled and autistic people and their families. Oliver’s Campaign is an important step towards challenging the appalling health inequality faced by people with a learning disability or autism."
Saba Salman - Social Affairs Journalist
‘Listening to Paula share her son Oliver’s story is heart breaking. Her steadfast campaigning will mean that other families can avoid the painful experience that the McGowans have had to go through. The Oliver McGowan Mandatory Training in Learning Disability and Autism means that all health and social care staff will receive training that will provide them with the right skills to understand the needs of autistic people and people with learning disabilities. This is a positive step forward and one that is thanks to Paula’s passion and determination to be a force for change.’
Philippa Spicer, Regional Director South East, Health Education England
'Paula and her family have campaigned tirelessly and supported better awareness through sharing Oliver’s story to really make a difference to people with learning disabilities and autistic people. It’s thanks to them that we’ve been able to reach a point where The Oliver McGowan Mandatory Training in Learning Disability and Autism will be compulsory for health and social care staff. This is a vital and important step towards making sure that health and care professionals have the appropriate skills to understand the needs of service users, and ensure that they and their families receive the best quality care.’
Mark Radford, Chief Nurse, Health Education England and Deputy Chief Nursing Officer
Anybody who loves and cares for a learning disabled or autistic person knows that they bring inexpressible joy not just to their family, but society as a whole. But we also know to our horror just how poor their outcomes are in hospitals and other medical settings, and so much worse than the rest of the population. Learning disabilities and autism are not illnesses, and this scandalous state of affairs is the result, above all, of misunderstandings about or ignorance of these very common conditions among health professionals.
I never met Oliver McGowan, but he was evidently a remarkable young man, full of life and promise who brought a very special magic to everybody who came into contact with him. His family’s tireless campaign to ensure that health professionals receive first class training is not simply a memorial to Oliver’s memory, it’s the best possible way of ensuring the protection which will save so many other families, including my own, from having to endure such tragic loss themselves.
I wholeheartedly support the campaign to ensure that the Oliver McGowan Mandatory Training Learning Disability and Autism is introduced throughout the National Health Service and beyond.
Stephen Unwin Writer, Director, Teacher, Chairman of KIDS, Father of Joey
I have been following Paula McGowan on Twitter ever since l read her story about Oliver's passing in hospital. As a lecturer in learning disability nursing, this story resonated with me in so many ways. This is the message we try to spread to as many healthcare professionals especially student nurses and colleagues from alternate fields to raise awareness about the experiences of people with learning disabilities and autism when they access mainstream services. Oliver's passing could have been avoided, should have been avoided if only professionals had listened to him and his family. People with learning disabilities and autism deserve respect, empowerment and a voice. I am so thrilled that Paula worked tirelessly to bring justice for Oliver's memory by securing the Mandatory Training. Oliver has opened opportunities for the survival of patients with learning disabilities and autism in future. Congratulations Paula and family. Oliver is smiling in his sleep, smiling at you all. Well done.
Chris Dlamini Snr Lecturer in Learning Disabilities Nursing; RNLD, RNT(NMC), Fellow of the HEA, LIDNAN, PhD student Copy
Oliver McGowan should not have died. Both as a doctor and as a parent of someone with complex epilepsy and learning disability I am horrified that both Oliver’s and his parents’ requests to avoid drugs that had previously resulted in adverse effects were not heeded. I have huge admiration for their work to bring some positive changes out of their tragic experiences and fully support their efforts to make meaningful and effective training on learning disability and autism mandatory for all clinicians on a regular basis. It is very important though not to simply delegate all of this work to the one profession that has been stepping up to the plate for decades i.e. nurses. Doctors are the clinical decision makers. They need to be involved in developing, delivering and attending this training. It clearly can impact profoundly and tragically on someone’s life if an inappropriate clinical decision is made.
Dr Dominic Slowie, GP, National Clinical Director for Learning Disability NHS England 2013-2016 and led on commissioning the LeDeR programme
Oliver McGowan was a young man with his whole life ahead of him. His death was a tragedy.
It is so important that people with a learning disability and autism are in control of what happens to them. This means that people working in social care and health must listen and plan support alongside people with a learning disability and autism and their families.
Staff need to understand how autistic people or people with a learning disability might communicate important things. They need the confidence to enable people to share things, the humility to listen, and the skills to act on these properly.
Making the Oliver McGowan mandatory training, based on the capabilities frameworks, an essential part of every professional’s learning and development is a real opportunity to change people’s lives so that no other mother has to go through what Paula has gone through.
Oonagh Smyth CEO Skills for Care
Oliver’s death was a tragedy, but one that could and might have been avoided if only him and his family had been listened to. Without a proper understanding of autism and learning disability the health care system is sadly doomed to repeat the terrible mistakes we hear about far too often; this must change and all staff must be trained on how to meet the needs of their autistic patients.
The National Autistic Society supports Paula and her campaign to achieve this and salutes her work to turn such a tragic personal situation into a force for change.
Jane HarrisDirector of External Affairs & Social Change Copy
Enough is Enough Time4Change #IAMchallengingbehaviour
I never knew Oliver when he was alive, I wish I had as I’m sure I’d have loved him. His death was totally unnecessary & resulted from lack of awareness & training about autism and professional pomposity in thinking families don’t know best. This has to stop. Justice for Oliver will make it stop.
Sam Sly MSc
“Swmae (that’s Welsh for hello)
I’m Wayne Crocker & I have been lucky enough to work with people with a learning disability for over 25 years. I work for Mencap Cymru & fighting health inequalities has been a passion since I joined Mencap in 1998. Poor attitudes & lack of awareness about learning disability & autism are the root of the appalling treatment many learning disabled & autistic people receive within the NHS. Mandatory training about the medical & social biases staff might have about people with a learning disability can go a long way in preventing deaths by indifference. That’s why I am supporting Oliver’s campaign in England & the Ridd Campaign in Wales. Two families both suffering the avoidable deaths of their loved ones. Hopefully training will prevent more families joining them.”
Wayne Crocker Director of Mencap Cymru
My charity Anna Kennedy Online and I fully support Paula's campaign to get mandatory training to address the huge health inequalities facing autistic children and adults who also have a leaning disability. Parents are waiting to hear about the training that government officials have promised will happen in the very near future. I feel that Paula is paving the way for my sons and other autistic children and adults so that they are given the deserved support and care they deserve.
Anna Kennedy OBE
"When parents are telling the professionals something has to change the professionals need to listen. No one should have to lose their life in order for our voice to be heard."
DR Carrie Grant
“I support Oliver’s Campaign to ensure that nothing like what happened to Oliver ever happens again. I wish I had got to meet Oliver he seems to me that he was an energetic, humorous and well-loved young man. This world has lost one of its best people.”
Steve Hardy Practice Development Nurse
My name is Deborah Brownson MBE
I support Oliver’s Campaign as I’ve worked with the autistic community for over 15 years, along side caring for my own two autistic sons. I’m also Lead Governor for Autism & Learning Disability for my local NHS Trust.
Oliver’s informed wishes and those of his parents were ignored and overruled, with tragic consequences. They deserve to know why. There needs to be mandatory training in autism and learning disability to improve access and outcomes for autistic patients and to make sure no family has to go through what the McGowan’s did.
I’m inspired and moved by Paula’s determination to not let her son’s death be swept under the carpet and ensure lessons are learned. I give my full support to this campaign.
"I support Oliver's Campaign because I strongly believe in both adults and children, should have the best care and treated with dignity, at all times. I support Oliver's Campaign, as I strongly believe that all nurses should be properly trained, in the looking after, of people with autism and other learning disabilities.
I strongly believe that the parents/ carers of said people, should be listened to. The hospitals should listen to the patients, too.
Oliver's Campaign is doing a marvellous job, in highlighting this problem in the healthcare today, of vulnerable people."
Mrs Jane Davidson
Many lessons to be learned from Oliver’s tragic death. We must all help raise awareness and support Oliver’s mother Paula with her campaign for the NHS to introduce mandatory training in autism and learning disability for health professionals
Oliver was only 18 when he died. His life mattered so much. But the doctors and nurses who were treating him didn't understand his autism and learning disability, and didn't listen to him and his family. Oliver's campaign is all about making sure that people are given the dignity and respect they deserve in hospital. Oliver and his family were failed, with the most heart-breaking consequences. But this campaign could help change that for thousands of people in the future.
Eve Jackson, Activism Manager, Mencap
“I would be a strong advocate for mandatory training for all undergraduate and postgraduate healthcare professionals in the care of those with autism, learning difficulties and physical disabilities. The best people to teach us these skills would be the ones who know them best, their families, carers and loved ones.”
DR Amir Khan
So many times as RNLDs we are asked 'what do we do?', 'why didnt you study to be a proper nurse?'. Meanwhile people with learning disabilities are receiving inadequate care and dying at the hands of ignorant and arrogant professionals in perceived positions of power. We need to reinforce the legal framework that is there to protect our most vulnerable and not there for professionals to use to restrict and limit their lives. Instead the legal framework should be used to hold these professionals to account. Oliver's legacy is that there should be absolutely no hierarchy in healthcare for people with learning disabilities and autism. They should be able to make choices and express preference about the care they receive. It is our jobs as healthcare professionals to facilitate this.
Katie Edwards RNLD
“I admire and respect Oliver’s family for their perseverance and perspective on their reaction to their son’s unnecessary death. It is clear this could have been prevented by some seemingly simple input and training. We know only too well the need for healthcare workers to respect and work with individuals on all levels and whatever their needs, listening to them and their family/carers. Gone is the time for rhetoric now is the time for action. One more death is one too many there is no need.”
’ve met many people over the last 19 years an a high profile award winning national Campaigner for autism, but Paula is one of the most dedicated and compassionate to justice I’ve ever met and that’s what she fights for, I’ve never met Paula but feel I’ve known her for years, she leaves no stone un- turned she’s a fighter, I’m not a parent I don’t have children, Paula adored Oliver she loved him un-conditionally, after losing her son through the neglect of the doctor whom should have cared for her son, she campaigned to get mandatory training, and still campaigns its been a pleasure to know this remarkable woman, hopefully one day we will meet, Paula I’m sure u will one day set up a charity or trust in Oliver’s name and leave a lasting legacy he would be so proud of you, as he was so proud of you being his wonderful mother.
Kevin Healey BCAv
“Autism is something that is very close to my heart. Reading about the horrific treatment that Oliver suffered whilst in hospital is unforgivable. Especially given the arrogance of the Doctor who administered the fatal drugs. I cannot bear the thought of another child going through this. Greater awareness in Autism and Learning difficulties is required and understanding that the two don’t necessarily go together. I am in awe of Paula for her bravery tenacity and for putting her heart and soul in doing her very best to ensure that Oliver will live on in his loving mother’s campaign with education and training professionals and in seeking some kind of justice for Oliver.”
My family support Oliver's campaign because we believe absolutely everybody should receive safe care,treatment and kindness inside a hospital or healthcare setting. Kindness needs to incorporate listening fully to families and wherever possible involving them & their knowledge & love in decisions.
The Mann Family X
“People with a learning disability and/or autism are often misunderstood by people who have no knowledge of how to provide good quality care to meet their needs. This results in health inequalities and early deaths. This has to stop. I support Oliver’s Campaign because I believe that every health and social care practitioner, including those providing residential support, MUST receive learning disability and autism training, to ensure better health outcomes for people for whom they care.”
Sue Bridges RNLD, Dip (HE), BSc (Hons), MA. Professional Lead (Learning Disabilities / Autism)
“I support Oliver's campaign because, as a clinical educator I know that real learning, across all services, including all professions, and at all levels is the key to preventing further avoidable deaths. We don't need to wait for 'permission' this must start now.”
Steve Turner RGN; RMN; Ba (Hons) P.G. Dip Ed. Nurse prescriber & educator
For many years we have been fighting to improve the health outcomes for people who have autism and people who have learning disabilities. It is such a tragedy that despite the increased awareness about the importance of listening to people and their families and of making reasonable adjustments, people are still dying prematurely.
Oliver had everything to live for, he was (and still is) a much loved and treasured young man who deserved so much better health care and treatment. I am in complete awe of Oliver’s amazing family who are tirelessly campaigning to change the way doctors, nurses and other health staff are educated. I am supporting this campaign wholeheartedly because I share their passion to do whatever we can to change the way people who have autism and people who have learning disabilities are perceived and treated and to reduce needless premature deaths.
There is a saying that states 'ignorance is bliss'.
Its so untrue.
Ignorance is a killer. It takes the lives of innocents and sentences families to unimaginable torture.
Training in Autism and Learning Disabilities must take place across all roles in the NHS and social care.
This will do so much more than prevent horrors like Oliver's. It will enable our loved ones to be cared for appropriately when they are in crisis or struggling with the anxieties bought on by simple admission into hospital, environments that are so overwhelming for many with ASD /LD.
Jeremy Beth's Dad
As a Mum to a daughter with cerebral palsy and a brother with autism, the passing of Oliver should never have happened. I joined the NHS campaign 5 years ago against cuts but also to improve services so that for example what happened with my daughter should never happen to anyone else.
I am delighted to come across Oliver's campaign and be able to support the family for one reason. Because of the lasting legacy that Oliver created that his family champaign on. I may not have known Oliver but learning what I have by his family fighting for change, I know that he was an amazing young man.
Councillor Hazel Dawkins Chelmsley Wood Town Council
The death of a child is every parent’s worst nightmare. But the pain of losing your child to an avoidable and preventable death is unimaginable. Oliver died because of ignorance of autism and learning disability. If the medical professionals had had adequate training in autism, if they had understood his needs and made reasonable adjustments to meet those needs, Oliver wouldn’t have died.
Oliver’s courageous, resilient and visionary mother Paula McGowan – despite her personal trauma and grief – is doing all she can to make sure what happened to her son, doesn’t happen to another person with autism, learning disability or both.
It’s estimated that 1 in 100 people in the UK has autism. That’s 600,000 people. They are human too. Adequate tiered training is urgently needed across Health, Education, Social Care and Policing. This is Oliver’s legacy. Please support #Oliver’sCampaign. Until everyone understands.
Isabelle Garnett Autism Campaigner and Parent
Oliver’s death should not have happened. If doctors had listened to his family he is likely to have been alive today. His death has exposed the inadequacy of the coronial system and systems such as Leder that are meant to help us learn from deaths. The grief and tenacity of his family has brought Oliver’s story to the wider public in a campaign to train healthcare staff. I totally support Olivers Campaign and want to see a huge shift in how the healthcare system values autistic people and people with learning disabilities.
Alicia Wood Head of Public Affairs Dimensions
I’m supporting Paula in her fight and her campaign for all autistic people to be treated with decency, compassion and dignity. It’s a basic human right to access healthcare safely and without prejudice. Autistic and learning disabled people deserve the same rights as any other human being. Autism and learning disability aren’t preventable, avoidable errors in treatment are.
As a learning disability nurse and an academic it is of paramount importance to me that we constantly promote not only the rights of people with a learning disability to receive equitable care, but that we ensure that all healthcare professionals understand the essential premise that:
Individuals should receive care based on their unique situation, that is effective in its delivery and appropriate to their current situation
From this should follow a culture of open, honest and proactive practice where staff lacking in confidence can ask questions and seek support to practice effectively. No one should be left behind or let down because as we say at Positive Choices