Patient Stories

Hi, I’m Amanda and I’m a wife and a mum to 3 boys. I was born with muscular dystrophy (MD), a degenerative condition that weakens muscles over time. I’ve had 2 admissions to Intensive Care; firstly for 3 months with sepsis, and secondly for over 6 months due to anaemia. Both times MD complicated my admissions, and I was ventilated and had a tracheostomy to assist weaning from the ventilator.

‘Finally in a few months I’m off to my lifelong dream trip to Vietnam and Cambodia, well so I thought’. Night of the 7th January 2019 (due to fly out 8th), I started having unusual intense pins and needles in my hands and feet, the next morning this got worse. I felt unsteady on my feet so made an appointment at the doctors that morning.

For a few weeks I was feeling under the weather and on 3 occasions was kept in overnight in hospital for observations but was eventually discharged. On the 10th of June 2017 I was admitted again, this time I was kept in. On Friday night I was in considerable pain, so they decided to operate.

As we come to celebrate 70 years of the NHS in July 2018, founded by MP, Nye Bevan, for Ebbw Vale, South Wales, I come to celebrate my 10 years of survival of a critical illness in July 2008.

Just to give you some background about me, I have been married to Lyn for over forty years, and we have a son and daughter, who we are extremely proud of.

For a few weeks in July 2020, I had a sore back, being in lockdown and having overdone it on golf and cycling I didn’t think much of it. I visited physios and Chiropractor, but everyone agreed it was just being nearly 50 and over doing it. Gin and Tonics with some rest was the answer – an answer I happily accepted.

The BRI recently shared a positive story for one of their complex long stay patients, demonstrating fantastic examples of MDT team working and innovation and enhanced patient care.