NHS Greater Glasgow and Clyde cancels 'life-changing' operation for girl four times

Ella Williams suffers from cerebral palsy after being born at just 26-weeks, leaving her struggling with her mobility and in need of support aids.

The five-year-old was due to go under the knife at Glasgow's Queen Elizabeth University Hospital for a Selective Dorsal Rhizotomy (SDR) on her lower spinal cord to reduce spasticity in her legs.

The surgery was planned to go ahead in January, then March, then April, and finally May before being cancelled each time, sometimes on the day of the operation.

Ella struggles with her mobility

Now her mum, Jennifer Faulds, has been left feeling like a “failure” and slammed the hospital for repeatedly delaying.

But the health board said the operations were cancelled as they still face huge pressures from Covid-19. 

It comes as the 46-year-old recently relocated to Bearsden, where her mum lives, after the sudden death of her fiancé and Ella's dad, Alex Williams, 47, in May 2020.

She told the Glasgow Times: “I feel like such a complete failure. I wanted my daughter to maybe even walk into school on her first day but that can’t happen now.

“It has been really tough for us. I have had to take time off work and get Ella's hopes up just to be constantly cancelled on.

“I am on my own dealing with all this after my partner died, it is a lot.

“Now she's deteriorating because her hips and legs are getting tighter. She's not walking as well as she was before.

“The hospitals said to me they are in crisis, which to me sounds like they fundamentally can’t run the service, they are under too much pressure.

“I don’t think the hospital should be advertising a service they can’t seem to provide, it is giving false hope to children with disabilities.”

Parents Jennifer and Alex

Cerebral palsy is the name for a group of lifelong conditions that affect movement and coordination, according to the NHS.

It's caused by a problem with the brain that develops before, during or soon after birth.

The operation would cut certain abnormal nerve fibres that cause high muscle tone.

The goal of the surgery would relax the muscles by identifying and cutting only those nerve fibres that contribute to spasticity.

Now Jennifer is planning to book the operation privately for later this year to make sure her child has the best chance of using her legs.

It will cost her roughly £40,000 for the procedure plus accommodation and travel to London, but she said she now feels she has no other choice.

She explained: “I can’t trust going through that process again. I can't put myself or my child through it anymore.

“All this time my daughter’s legs are getting tighter and tighter and she is losing some of the function she already had.

“It was so important to get this operation while she was as young as possible to give her the best chance of mobility but it keeps getting put off.

“I wish I had just done it privately to begin with, but it is so expensive and I was assured it would be carried out in January.

“I’ve missed a whole year where her life could have changed.”

NHS Greater Glasgow and Clyde said in a statement: "We apologise for any delays to the treatment of children and young people referred to the Royal Hospital for Children.

"NHS Greater Glasgow and Clyde has been facing significant challenges due to Covid-19 and other seasonal pressures, and our elective procedures, along with a range of services across NHSGGC, have been affected by these pressures.

"However, paediatric neurosurgery has always been prioritised during these times.

"Around three quarters of neurosurgery is for urgent or emergency referrals, which means there is always a risk that the remaining scheduled cases may be postponed.

"It is regrettable that surgery has had to be cancelled because an emergency referral presented for immediate treatment.

"While we understand the frustration this undoubtedly will cause, we must prioritise clinical need.

"We are happy to discuss any further issues with the family."