My daughter Elvi, 24, has a fear of hospitals.
She knows when we’re anywhere near the London hospital where her consultant is based.
Last time I tried to take her, she tipped herself out of her wheelchair and she once upended equipment in the X-ray room at Great Ormond Street Hospital because she was terrified and there were no specialist learning disability nurses to support our appointment.
Elvi, who has a genetic disorder, a rare form of dwarfism and severe learning disabilities, has not had blood tests for five years because she needs at least four people to make them happen.
For years, I’ve been asking for Elvi to have NHS investigations under general anaesthetic to try to understand some of her unsettled behaviour, such as self-harm and biting carers in anger.
I wrote in Community Living recently (Tortuous transition to adult life, autumn 2025) about the brutal process of finding a home for Elvi. Now I want to shine a light on a more positive experience, this time relating to healthcare.
Last year, when Elvi was in her final year at a special needs college in Hampshire, she was referred to the learning disability team at the NHS child and adolescent mental health services (LD CAMHS).
We happened to get a brilliant nurse practitioner who took time to understand Elvi and prescribed anti-anxiety meds but also agreed something physical might be going on and pushed for investigations under general anaesthetic.
Together, we persuaded Elvi’s consultant in London that she should have her teeth, eyes, brain, hips, stomach and bloods looked at.
Over a few months, the consultant got together all the necessary colleagues who agreed to do this all in one day. I had a long chat with the anaesthetist team about how to manage Elvi’s sedation, and her dad sent pictures of her neck, profile and mouth, so we avoided a pre-op appointment.
We had a best interests meeting online the week before the appointment, which involved four consultants, the LD CAMHS nurse, the learning disability nurses at the hospital, Elvi’s supported living team and everyone who would be involved on the day.
The hospital staff told us they had never done anything like this before and that they will create an Elvi pathway for others with learning disabilities
We thrashed out: exactly how to get Elvi into the building; timings to make sure her stay was as short but as useful as possible; which ward she would be on; whether a play therapist would be helpful; and what legal documents, such as deprivation of liberty orders, would be required for which bits of her visit.
On the day, everyone swung into action. Elvi’s nurse practitioner drove from Hampshire to accompany us. A ward nurse met us at reception and took us straight up to a private room. There was a social story in the room explaining what was happening to Elvi, and drawing books to help distract her.
The anaesthetist talked us through exactly what would take place. Her consultant came too.
Elvi was taken to the MRI room where her dad held her hand as I held the mask over her face, reassuring her as she breathed in gas. Waiting outside to do their various tests was a queue of
doctors with their dental or ophthalmology equipment.
Five hours later, we were in the recovery room. Elvi was groggy and her hands were bandaged for her own protection and to prevent her from pulling out the cannulas in her arms. The nurses understood these would need to be removed quickly and did just that.
Back on the ward, they waited until she was fully awake, checked her over then let us go. This was all done in one single day.
We are waiting for the MRI results but the blood tests show Elvi is severely anaemic, so iron supplements have been ordered.
Before we left the hospital, staff told us they had never done anything like this before and that they will create an Elvi pathway for others with learning disabilities.
Something like this should have been set up in all hospitals years ago but at least it is in place now. While it is a last resort to sedate someone to do medical tests, my diminished faith in the NHS has been restored by Elvi’s nurse practitioner, her consultant and common sense prevailing.
