The nurses who make Alder Hey such a special place

The mere thought of working as a nurse in a major children's hospital is enough to bring tears to some people's eyes. For Joan Grogan, craniofacial neurological nurse specialist at Alder Hey, there is one saving grace - the children both arrive and leave looking healthy. "Often the children are so young they don't even know what's happening," she adds. "They don't like the nil-by-mouth rule before the anaesthetic, but that is often their only gripe."

What happens while they are in her care changes their lives for ever. Indeed, craniofacial surgery is a specialism that deals with congenital and acquired deformities of the skull, face and jaws. "The kinds of defects we deal with include craniosynostosis, cleft lip and palate, Apert syndrome, Crouzon syndrome and more," explains Grogan, who says that only four years ago they dealt with 49 major cases a year - a number that has now risen to 136. This is nursing at its most sophisticated - the surgery alone involves bone, skin, muscle and teeth and there are often professionals ranging from ophthalmologists to speech and language therapists who also work alongside her.

Grogan is literally the linchpin of the entire unit. "I see the children and their family when they first come to the clinic, I arrange all the investigations, I arrange the day for them to come back as inpatients, I see them on the ward, I arrange all follow-ups and I offer help and advice throughout," she explains.

Probably the biggest impact that Grogan has - along with all the other specialist nurses at Alder Hey - is on patient care, as Claire Prior knows only too well. Her son Cian was born in October 2008 with a large head. "As soon as he was born, we noticed his head was a peculiar shape, but they just said it was due to the way he'd been sitting in the womb," she says. "When we went for his eight-week check, the doctor brought it up and referred him to a paediatrician, but despite having ultrasounds and X-rays nothing showed up, so again it was dismissed. It was only when we went for a check-up last August, that it became clear that his head was growing front to back rather than all the way round and he was referred to Alder Hey to have major surgery."

Initially, Prior was told it would be the new year before Cian could have surgery, but she received a phone call the next month. "There had been a cancellation for the following week. I was relieved, but also terrified and turned up to Alder Hey very nervous. But it was a lovely atmosphere and Joan stood out as a supportive figure immediately. She ensured everyone stayed clear of difficult terminology and abbreviations. She also gave us some time and space in the quiet of a private room. I remember her explaining everything once more to make sure we really understood and that made such a difference, because when you're in a state, you don't take everything in."

Grogan helped in other ways too, says Prior. "It was the little things, like being able to ask as many questions as you want without being made to feel stupid. We wanted to know what we should bring for Cian food-wise and what to do about car parking and dressing his wounds afterwards."

Grogan also arranged for the family to stay at Alder Hey. "We live a 45-minute drive away, so that was brilliant. It meant we could stay with Cian for the entire duration of his visit, except, of course, the time he was in surgery. That was the longest five-and-a-half hours of my life, especially as I'd looked back after they'd put him to sleep. He honestly looked dead at that point. I shall never forget it. I broke down on my way back to the ward and the nurses were wonderful."

The family had expected to stay longer than the four days they did, but Cian made such a fast recovery he was able to leave quickly. "He just bounced back and I honestly believe it was due to the staff's amazing care," Prior says.

Now 17 months old, Cian is coming on leaps and bounds. "We had to go for follow-ups obviously, but they were so pleased with him last time that we don't have to go back for another year. But it's still nice knowing that we can call Joan at any time."

Grogan initially came to Alder Hey in the late Eighties as a theatre nurse. The first paediatric neurosurgeon started at the hospital the following year and she was asked to set up neurosurgery in theatre. "From there, I got involved in craniofacial surgery and started doing craniofacial clinics," she says. "I did paediatrics, counselling and mentorship and developed the role I now have."

Her job satisfaction comes from seeing children grow up normally, she says. "The patients are typically seen by the hospital over a number of years, since many of them - especially those with Apert or Crouzon syndromes - need a lot of surgery over a long period of time. I really get to know them and their families. The children often ask specifically for me, even when they're on the ward, where I don't actually work. Even children such as Cian, who are only in for a short time, need some kind of follow-up. I love seeing what a difference we have made to a child's life. Like the fact that I've hopefully made one of the most difficult times of the parents' lives a little easier too."

There are only four hospitals in England that specialise in craniofacial surgery for children. With Alder Hey being the most northern, it covers a large geographical area. "We never turn anyone away, so that means we can be very busy," admits Grogan. "But the good thing about other places doing what we do is that we can learn from each other. Every year, all four units get together, along with the governing body [that regulates] this work, and that is incredibly useful."

Such is her devotion to learning and development that Grogan is responsible for ensuring specialist nurses become more involved in regular international conferences that previously catered exclusively to craniofacial medics. "I thought, why shouldn't nurses be involved? And was immediately able to get two days of the conference devoted to specialist nurses."

Indeed, while Grogan focuses on neurological nursing, her colleague Debbie Quirk is a surgical nurse specialist. Having witnessed her daughter's best friend being born syndromic and consequently needing lots of surgery to her face and head, she found an interest had been sparked. Having qualified in 2001, and moved into her specialist nursing role within two and a half years, she says, "I asked Joan to take me under her wing and I now have a dual role as a sister on the neurosurgery ward 15 hours a week alongside being a nurse specialist in the craniofacial unit for 22 hours a week."

Probably the biggest challenge of Grogan's role is the level of organisation, she says. "When our patients come, they will need to see a range of specialists including the surgeon, maybe a psychologist, a physiotherapist, someone from ear, nose and throat, orthopaedics and urology. They might need to see up to 14 professionals and we try to get them in the room at the same time so they can see everyone at once. It is intimidating, but ultimately saves them so much time and bother that they really like it once they get used to it."

Grogan's work can even take her overseas. "I'm off to Belfast tomorrow to talk to a school about one of their 12-year-old pupils who has Apert's. She'll be leaving school looking like one child and go back completely different, because we have to change her features. It won't just affect her family, but her friends, so we want to educate the school and get them to be involved."

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