Chris Young, host of Walk a Mile in my Shoes Podcast, interviews ECT survivor Andy Luff and his partner, Jill Davies.
Andy sought help for his sensory processing disorder (SPD), a nervous system condition that impacts emotional regulation for those with or without autism. (This condition is treatable with occupational therapy and lifestyle changes.)
Instead he was referred to psychiatry, labeled rapid cycling bipolar and heavily medicated for years.
When Andy was referred for electroconvulsive therapy (ECT) he said wasn’t given informed consent. Nor was he offered talk therapy prior, or given proper follow up on drugs which he developed akathisia from. His doctors called it agitated depression. They were essentially treating his akathisia with ECT.
Andy was told during his ECT consultation:
- ECT is no worse than going to the dentist for a filling.
- He shouldn’t make important decisions right after treatment.
He was never told ECT causes permanent brain damage.
After expressing hesitation for his for treatment nurse told him “Don’t believe everything you read online.”
After several treatments Andy experienced spontaneous seizures, and incontinence. He lost many skills like his ability to write poetry.
And like many injured by ECT, he had problems with family.
A New Chapter
With the right support from friends and a brain injury organization called Headway, Andy was able to build a new life after ECT.
A big part of that was learning to accept his losses so he could move forward.
On his road to recovery he met his partner Jill.
Andy is now volunteering for Headway and helping peers where he can.
- Andy’s Story
- ‘I didn’t recognise myself anymore’ – Big Issue North
- Breaking ECT News in the UK – BBC Hereford & Worcestershire, 2021
- A Review of ECT in the UK, Walk a Mile on my Shoes Podcast
- 4 patient safety activists discuss their efforts for an independent review of electroconvulsive therapy (ECT) in the UK
- Living With ECT (electroconvulsive Therapy) Brain Injury; Failed by ECTAS, RCPSYCH, NICE, and CQC