The death of our son Oliver in 2016 exposed a devastating reality: too many autistic people and people with a learning disability were not receiving the person-centred care, understanding and reasonable adjustments they needed within health and social care.
Oliver was an 18-year-old teenager, who was autistic, had a mild learning disability and epilepsy. He should have had a future ahead of him. Instead, his death highlighted systemic failures and the urgent need for health and social care professionals to have the right knowledge, skills and confidence to provide safe, personalised and compassionate care.
Oliver’s death was not an isolated event. Through the Learning from Lives and Deaths (LeDeR) reviews, we have seen the unacceptable health inequalities experienced by people with a learning disability, including the fact that they die significantly earlier than the general population and that many deaths involve avoidable factors.
Oliver’s death became a catalyst for change, but also represented a wider systemic issue requiring urgent action. From this tragedy came Oliver’s Campaign, calling for mandatory training for health and social care professionals. The campaign was built on a simple but powerful principle: training must be developed with, and delivered by, people with lived experience. We believe the voices of autistic people and people with a learning disability must remain central to training and the way services are designed, delivered and improved.
The introduction of the Oliver McGowan Mandatory Training on Learning Disability and Autism marked a significant step forward. It became Government’s recommended training to support health and social care providers in meeting their statutory responsibilities under the Health and Care Act 2022.
The publication of the Oliver McGowan Code of Practice represents the next stage of this journey. The Code provides a framework for organisations to move beyond compliance and embed lasting cultural change. It sets out expectations around statutory learning disability and autism training, including quality delivery, involvement of people with lived experience, and ensuring staff have the knowledge and skills required.
However, we know that meaningful change cannot come from training alone. For health and social care providers, the real measure of success is whether learning is translated into everyday practice, leadership and decision making. It means ensuring that reasonable adjustments are embedded into care planning rather than being considered only when problems arise. It means recognising that every person communicates differently and that services must adapt to meet individual needs, rather than expecting people to fit systems that were not designed with them in mind.
It also means ensuring that people with a learning disability and autistic people, alongside their families and advocates, have a meaningful voice in shaping services. We know that people with a learning disability and autistic people continue to experience significant health inequalities. Too often, their needs are misunderstood, communication differences are misinterpreted and concerns are not recognised early enough. The consequences can be life changing.
The Code of Practice aims to address these inequalities by ensuring staff have the confidence and capability to provide better support. However, its success will depend on organisations embracing the principles behind it: listening, adapting and placing the person at the centre of every decision.
For providers, this means asking:
- Are people with lived experience genuinely involved in shaping services?
- Are staff confident in making appropriate reasonable adjustments?
- Are leaders using learning from incidents, reviews and feedback?
- Is communication accessible, personalised and responsive to individual needs?
The Oliver McGowan Mandatory Training has always been about more than completing a training session. It is about changing attitudes, challenging assumptions and ensuring that every person receives care that recognises them as an individual.
As we approach the tenth anniversary of Oliver’s death, our hope is that his legacy continues to drive meaningful and sustainable change. Training is an essential part of that journey, but lasting improvement requires organisations to embed the principles of the Code of Practice into everything they do. Every interaction matters. Every decision matters. Every person matters.
To bring the Oliver McGowan Code of Practice into day-to-day work with real impact, providers must use its principles in the everyday decisions and systems to help shape the care experience. People with a learning disability or autistic people need to have an active role in service improvement. ‘Nothing about us, without us’ should go beyond the training room into care planning, policy development, quality reviews and service design. Their involvement can bring attention to practical issues that professionals may not immediately recognise, such as unclear information, spaces that do not meet people’s needs, rigid appointment systems or communication methods that exclude or disadvantage individuals. Providers should also make preventative adjustments rather than something brought in after a problem occurs. It is vital to ask and document a person’s sensory needs, how they communicate and their specific routines. By having this information, we can tackle diagnostic overshadowing. This ensures that when a person’s behaviours change, it is not automatically dismissed as just a symptom of their learning disability or autism. The Code should also be connected to wider learning from programmes such as LeDeR and Ask Listen Do. These initiatives highlight how crucial it is to listen to individuals and implement what they tell us. Putting this into practice, caregivers then need to have time to discuss cases, reflect on their day-to-day work and share the lessons they learn whenever a complaint or incident occurs. However, sometimes training alone is not enough and the systems they work in must also be built to support the staff in addition to their training. Accessible and easy-read information with clear documentation can also influence whether good practice is possible, as well as effective handovers between services and sufficient time to develop personalised care plans. Providers must also measure the impact of the training rather than just attendance. Completion figures show how many people have received training but not whether care has improved. Feedback, complaints, compliments, incidents and quality improvement data should be reviewed to identify whether people feel listened to, understood and involved in decisions. Gemma Warren, Quality and Compliance Director, The Health and Safety Group. Email: [email protected] LinkedIn: @Gemma-Warren
Ten years on from Oliver McGowan’s death, autistic people and people with learning disabilities should not still be facing avoidable health inequalities. Training is only the first step. Lasting change depends on providers turning learning into action and embedding its principles into everyday care. For the past two and a half years, Cloverleaf Advocacy has been delivering the Oliver McGowan Mandatory Training across NHS trusts and local authorities. One message consistently stands out: hearing directly from people with lived experience helps staff better understand the barriers people can face and the role they play in creating positive experiences and outcomes. The key learning from our delivery of the training is that small changes can often have the biggest impact. Improving someone’s experience of health or social care can be as simple as giving people time to process information, providing accessible communication such as Easy Read, listening to what matters to them and making reasonable adjustments that enable them to access services in a way that works for them. Person-centred support is about recognising that people are experts in their own lives. One of our trainers shares how, when she needs a blood test, the District Nurse visits her at home. Being able to have the television on or listen to music helps reduce anxiety during the appointment. It is a simple adjustment but one that demonstrates how personalised approaches can improve care. If providers want to implement the Code of Practice beyond training, they must embed its principles throughout their organisation. This means making communication accessible, considering reasonable adjustments and ensuring services meet the needs of autistic people and people with learning disabilities. Even small details, such as the colours used in a care setting, can support inclusion or create barriers. Lived experience is one of the most valuable sources of insight available to providers. By creating genuine opportunities for co-production and listening to the people they support, providers can build trust, improve accessibility and ensure people feel confident accessing the care and support they need. Joanne Green, Operations Director, Cloverleaf Advocacy. Email: [email protected] LinkedIn: @Cloverleaf-Advocacy
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