A woman who was paralysed by a very rare condition that meant she had to learn to walk and talk again has praised the “incredible” team of nurses and doctors who cared for her.
Nicky Hayward spent 90 days in St Helier’s intensive care unit after falling ill with Guillain-Barré syndrome, a very rare and serious condition that affects the nerves.
At her sickest, she needed assistance to breathe, was put under sedation, and was so unwell that her family thought they were going to lose her.
But now – nine months on – Nicky is back home with her family and is well on the road to recovery. It’s thanks in no small part, she says, to the care she received in hospital.
“When I first fell ill my daughter got me into the car and said: ‘Where do you want to go?’ I said I wanted to go to St Helier, and that was probably the best decision of my life,” said Nicky, who lives in Morden.
“It’s an amazing place, and the care is just great. A lot of people don’t recover fully from this condition, but I did. I think that’s down to my determination, but also the treatment I received.”
Nicky first started to feel unwell in late February this year when she was out shopping and felt pins and needles in her feet. Things didn’t improve, and the following night when she went to bed she recalls her duvet feeling “really damp” with “cold patches” but no one else could feel it.
When she got out of bed the next day and her legs collapsed beneath her, she decided to go to St Helier’s emergency department, where she underwent tests and scans and was diagnosed with the condition.
“They said they were going to take me up to intensive care,” said mum-of-two Nicky. “It was quite scary, but I didn’t realise at the time just how ill I was, and I don’t think I did until I came out of hospital.”
For husband Andrew, however, the seriousness of Nicky’s condition was clear. “It was very difficult, she was lying in bed, and unable to do anything or move,” he said. “One day she appeared to take a turn for the worse. Bells, whistles and alarms went off, and then I was then placed on the other side of the curtain. I could hear everything that was going on – it felt like we were going to lose her at that point.
“But they knew right away what it was and what to do. The staff there always had the time, no matter how busy they were.”
After receiving specialist immunoglobulin treatment – a blood-based infusion that helps fight infection – Nicky started slowly but surely to recover, reaching small milestones and achieving things that many people take for granted, as well as seeing first-hand the outstanding care she received.
“On my birthday at the end of April, the nurses got me a birthday cake and took me for a coffee. I was able to eat a small slice as I had just started eating at that point,” she said.
“Another thing they did is they washed my hair – and I couldn’t wait to have my hair washed as it had been months as it’s something they aren’t able to do for you while have a tracheostomy tube in !
“I remember how much my feet always hurt. When she finished her shift, one of the nurses, Jess, used to come back and rub each one for 20 minutes.”
Nicky was also offered emotional support – including after a particularly difficult day when two people in intensive care sadly died.
“The consultant on duty came to see me to ask if I was OK, and if there was anything he could do,” said Nicky. “They also sent a counsellor around, and a junior doctor came back to see me to check I was OK afterwards.
“Everyone I met was so nice. The nurses, the doctors, and everyone else. The cleaner was so lovely, and would stop to ask how I was. When she went on holiday, she said when she came back she wanted to see me sat up. She cared about the patients.”
While Nicky was in intensive care, Andrew decided to lace up his trainers and complete a series of sponsored walks to raise money to help other patients. Half of the £1,200 he raised was used to purchase things like TVs, a wheelchair, mirrors, and hairbands.
Drawing on her own experiences, Nicky also purchased a special machine that makes flavour into foam so people who can’t swallow can taste again, as well as a simple device that makes it easier to wash a patient’s hair while they are in bed.
“They were things that I would probably have appreciated at the time,” said Nicky. “I hope that other people will benefit from them now.”
In May Nicky was finally well enough to leave intensive care and moved to a ward for a couple of weeks. From there she went to the Queen Elizabeth Foundation in Leatherhead, which helps people living with disabilities to gain new skills and increase independence, and then to the Wolfson Acute Neurorehabilitation Unit at St George’s Hospital. She underwent intensive therapy, including physio, and had to learn how to walk again, finally leaving hospital mid-July.
She has regained much of her mobility now but isn’t back to full strength quite yet. Her long-term goal is to join in with the running games at the Beavers group she leads, and to get back on her paddleboard. She also hopes to return to work soon.
James Blythe, Managing Director at Epsom and St Helier University Hospitals NHS Trust, said: “It’s fantastic to hear that Nicky is doing so well. Her comments about the care she received are truly humbling and testament to the incredible teams we have working here.
“All of our teams work very hard in challenging circumstances, and as we come into winter we’re expecting to be very busy. We’d urge everyone to use NHS services wisely – such as going to NHS 111 online when it’s less urgent – to ensure care continues to be available for those most in need.”
Jessica Gregory, a Senior Sister in the Intensive Care Unit, said: “Nicky was so very poorly, and we had some challenging moments during her stay on intensive care. She is such a remarkable woman. Her outlook on life is truly inspirational, and we all feel honoured to have been part of her recovery.
“I think one of the reasons she got better was due to her amazing husband and children, they spurred her on every day. Andrew managed to find the time to fundraise as well and to buy the unit some amazing things that future patients will benefit from. We are very grateful.”
Syreeta Lee, a physiotherapist who worked closely with Nicky, said: “Nicky always had a smile on her face despite experiencing some tough times. It was a pleasure to work with Nicky, and we wish her all the best in her continuing journey.”
