Safe and informed care for SEND children and young people in hospital
This is the personal experience of an ESPCF member whose son with SEND was recently rushed to hospital with suspected meningitis.
We’re sharing this story because we’d like to raise awareness about the Oliver McGowan Mandatory Training on Learning Disabilities and Autism and about the role of learning disability nurses.
We’d also like to invite any parent carers to share their experiences if their child or young person with SEND has been in hospital: did you know about the training and was it evident in how your child was cared for? If you didn’t know about it, do you wish you had? Would it have made a difference? Please get in touch so we can understand if this something other SEND families in East Sussex have experienced.
ESPCF feedback form (anonymous)
An ESPCF member’s personal account
At the end of January 2026, our 23-year-old son, who is autistic and has ADHD, was rushed to hospital. Blood tests and a CT scan in A&E indicated meningitis. As I’m sure any parent can imagine, this was a terrifying situation; as a SEND parent, there is always that added layer of complexity.
At my son’s request, I stayed in hospital to advocate for him for the full week that he received inpatient treatment. This wasn’t easy – it felt like this was as much of an adjustment as the hospital staff would allow. I asked to speak with the Learning Disability Liaison Nurse, but this request was ignored.
‘Being a baby’
Despite his extreme needle phobia, my son was repeatedly told he was ‘being a baby’ for wanting numbing cream before blood tests and when the cannulas were inserted or changed. I was also berated by a consultant for ‘interrupting’ him when I was simply trying to ensure our son had understood what was being explained to him about his treatment options.
Coercion
His request for a conscious sedation for a lumbar puncture was treated by staff as a vast inconvenience. My son stood his ground and only consented with this adjustment in place, but when it came to it the consultant told him off for demanding an unnecessary anaesthetic. She then coerced him into proceeding without the sedation by telling him he was delaying the procedure which would compromise a clear diagnosis. The consultant then started a noisy row with the ward medical team in his hospital room. I had to tell them to leave as their behaviour was making my son’s already extreme anxiety unbearable for him.
Left frightened
Exactly as predicted, my son was unable to stay still for the lumbar puncture, and it ended up with myself and a nurse having to restrain him while he leant over the edge of the bed weeping. It was extremely traumatic for him and her comments about the high risk of anaesthetic have left him genuinely frightened ahead of an upcoming surgery.
Of course, not all the staff were this awful. I want to acknowledge that many of them went out of their way to help him and be kind, but unfortunately his overriding hospital experience was still a very negative one.
Oliver’s Campaign
At the time that my son was in hospital, I was totally unaware of Oliver’s Campaign which led to the Oliver McGowan Mandatory Training on Learning Disabilities and Autism. Thankfully, my son is now recovering, but I wanted to share our experience in the hope that other patients will have a better experience in the future and know about the training hospital staff should have received. If I’d known about this, I think I would have pushed much harder for the reasonable adjustments my son requested and felt more confident challenging the consultants.
About Oliver McGowan
Oliver was an autistic teenager who was admitted to hospital in 2016 with seizures. He did not have a mental illness or any psychosis but was still given antipsychotic medication against his and his family’s wishes. He was intolerant to this medication and, tragically, died in hospital. His mother Paula’s relentless campaigning introduced a statutory requirement to the Health and Care Act 2022 that all CQC-registered providers must ensure their staff receive learning disability and autism training appropriate to their role.
This requirement aims to save lives by ensuring the health and social care workforce has the right skills and knowledge to provide safe, compassionate and informed care to autistic people and people with a learning disability. You can find out more about the training all NHS staff should have received here:
NHS webpage: The Oliver McGowan Mandatory Training on Learning Disability and Autism
Learning disability nurses
Learning disability nurses work in a variety of healthcare settings, including hospitals. Their role involves:
- improving or maintaining a person’s physical and mental health
- reducing barriers to them living an independent life
- supporting the person in living a fulfilling life
- advocating.
Learning Disability Nurses promote individuals’ autonomy, rights, choices, and their social inclusion in the health care system – read more on the Royal College of Nursing website about becoming a learning disability nurse.
There is information on the NHS website about going into hospital if you have a learning disability: Learning disabilities – going into hospital.