The hospital told me to GO HOME, but my daughter was critically sick. A bereaved mother’s 11 patient safety lessons

Summary

This is my story, as a bereaved mother, about lessons I have learnt following the unexpected death of my previously well 25-year-old daughter Gaia in University College Hospital London (UCLH) in July 2021. I have written 11 patient safety lessons in the hope this helps other families be more assertive if they have a critically sick relative in hospital. Believe me, you must be pushy to be allowed into a hospital ward, even more so ITU. I went to visit my critically sick daughter at around 10am on a Sunday morning, but was not allowed on to the ward. A senior nurse told me to GO HOME using the 'Covid' excuse. I was shut out from the bedside of my critically ill only child.

I have set up TruthForGaia.com to share learnings more widely. Please take a look. I hope sharing this may contribute to reducing avoidable deaths from brain conditions which can be only too easily assumed to be intoxication, especially on weekends. I believe raised intracranial pressure (high pressure in the skull) needs more awareness and training. When will UCLH hold a medical grand round on my daughter's case?

Content

My 25-year-old daughter Gaia was critically sick on the acute medical ward at UCLH. Gaia had never been to hospital before and I promised her in the ambulance that I'd collect her in the morning. Later on I found out that Gaia had become confused after she arrived in hospital on Saturday night. At home the evening before she was talking to me normally about her headache. She was not drunk. She had not taken drugs and told the hospital this.[1]

On the Sunday morning, when I'd still heard nothing from the hospital, I was besides myself with worry.  I went to the hospital to visit Gaia at 10 am. The senior nurse told me to GO HOME, but later told me she could have made an exemption and allowed me on the ward to see Gaia.

Here are some of the lessons I have learnt: 

Lesson 1: Stay with your loved one 

I wasn’t allowed to accompany Gaia in the ambulance and the hospital turned me away using the 'Covid' excuse. Be a nuisance, insist on being allowed to visit in person, as you know the patient best. 

Lesson 2: Make sure your background information is heard by those who need it

The ambulance crew knew that Gaia was not intoxicated. Yet this critical information was lost at the handover to UCLH. You can supply those crucial background facts.

Lesson 3: Be extra vigilant on weekends

My experience is that least-experienced clinical staff are in the hospital wards at the weekend whilst being trained. During Gaia’s stay, three junior doctors (two in their first year) at the hospital were responsible for 57 beds and about 15 admissions per night. Other high-risk industries (like aviation or nuclear) have no 'skills dip' at weekends or holidays.

Lesson 4: Don’t assume that the doctors always know best

Because of her age and unfortunate weekend timing, Gaia’s acute symptoms of headache, vomiting and confusion were assumed to be due to intoxication despite her denials. She was put on a drip and left to “sober up” for 10 wasted hours. Trust your instincts and challenge clinicians.

Lesson 5: Fundoscopy versus CT scan

Medicine has become over-reliant on imaging technologies. Manual diagnostics have become old-fashioned on a busy ward. Be aware that there are situations when hi-tech diagnostics can’t tell the truth.  I have spoken to many junior doctors who tell me they don't do fundoscopy; however, this is a core skill set down in the General Medical Council undergraduate curriculum. A simple and immediate look into Gaia's eyes with a fundoscope would have shown signs of life-threatening raised intracranial pressure, causing her symptoms. Instead her CT scan 13 hours later was wrongly reported as 'normal'.

Lesson 6: Don’t wait for the hospital to contact you

UCLH made two half-hearted attempts to call me from a withheld number with no message being left. I was not asked for valuable background information which would have helped, nor kept informed or made aware that Gaia had deteriorated and was critically ill.

Lesson 7: A sudden death and clinicians will close ranks

Why was I not gently taken through what had happened and told that Gaia was actually brain-dead on the medical ward before transfer to ITU? I learned that medics would hold back if there is a possibility of substandard care.

Lesson 8: The brutal reality of organ donation

Gaia was put onto a ventilator to preserve her organs for donation. Gaia had signed up as donor. Nevertheless, I could have refused permission. The donor’s family will have the final word. Ask any question, take your time, even if you are being told that time is of the essence.

Lesson 9: No hospital trust shall investigate itself

The UCLH Trust promised to carefully review every aspect of Gaia’s illness, care and death; instead, complacency and obfuscation have been prevailing. Its two Serious Incident Reports concluded that Gaia’s was a “tragic and unusual” death. My belief is hospital trusts tend to value their reputation over patient safety and learning – harming those already traumatised and bereaved without blinking an eye.

Lesson 10: Be ready for the coroner’s inquest

Gaia’s coroner allowed UCLH to choose their own witnesses[2], and discarded my request for an independent neurologist. Despite Gaia having died of a brain condition, no neurologist was present at her inconclusive inquest. The lesson I learnt is that coroners have a 'working relationship' with hospitals, are rarely medically trained and depend on information from the trust and clinicians. 

Lesson 11: Fight back

You will need the support of medically and legally qualified friends. Any publicity and public scrutiny trumps investigation. Simple vigils outside hospitals, Trust headquarters and at public board meetings make a difference.

I am a great believer in the NHS but when it fails us we must hold it to account.

Nothing will bring Gaia back, but if my perseverance[3] will help to bring about better outcomes for others it would be a fitting legacy for my beloved daughter.

References

1.  University College Hospital London Medical Records Gaia Young. July 2021. pg 2, 8, 38. https://truthforgaia.files.wordpress.com/2023/01/g-young.pdf 
2. Patient Safety Learning. Treated with callous disrespect: A bereaved mother’s tale of institutional apathy from the Coroner Service. 11 January 2024. https://www.pslhub.org/learn/patient-engagement/patient-stories/treated-with-callous-disrespect-a-bereaved-mother’s-tale-of-institutional-apathy-from-the-coroner-service-r10755/
3. Dorit’s investigation – memorandum submission. January 2023. https://truthforgaia.files.wordpress.com/2023/01/dorit-young-memorandum-submission1-revised.pdf 

Related reading on the hub:

• Treated with callous disrespect: A bereaved mother’s tale of institutional apathy from the Coroner Service