Anne’s story: Our first ever Roald Dahl Nurse Specialist creates a sense of community between epilepsy patients
When Anne Sweeney took up her current post as Roald Dahl Epilepsy specialist 21 years ago – the first job of its kind in paediatrics in the country – she was already very familiar with Alder Hey.
“I’ve had a very varied career’, says Anne, some 40 plus years after starting training here in 1970 “But Alder Hey and working with families has always been where my heart is.”
Varied indeed, as the first twenty years of Anne’s career in nursing saw her working as an ICU nurse, a midwife, a general adult nurse, and a ward manager before temporarily leaving the profession to open her own successful café and catering business.
Anne explains: “As soon as the café was up and running I signed up to become Bank staff at Walton hospital because I missed nursing and I missed the excitement of being in a hospital. I missed caring for people, supporting parents, children and their siblings and helping them cope with the stress of illness in a family member.”
Alder Hey welcomed Anne back when she re-joined as part of a research project with Imti Choonara, now a Professor in Derby. The febrile convulsion study led to an interest in epilepsy. With the Roald Dahl scheme in its infancy, Richard Appleton neurologist suggested Anne look into becoming a nurse specialist.
“I didn’t even know what the role meant, so I spent a lot of time researching before I made the decision to take the job,” says Anne. “I spoke to Macmillan nurses and adult epilepsy specialists around the country. There were no paediatric epilepsy nurse specialists so it felt like the opportunity to do something new and really enhance patient care.
“I started approaching families and asking them about the sort of care and support they were getting for their epilepsy, what was working well for them, and what they’d want a nurse specialist service to provide. I did the same with professionals delivering an epilepsy service and used this feedback as a starting point to shape the service and my role at Alder Hey.
“Initially we were focused around getting information out to families, helping them to fully understand their child’s condition. I wrote a lot of information leaflets during that first year, and the whole thing helped enhance my knowledge of epilepsy too.”
Anne now semi-retired still runs teaching workshops for teachers and carers on how to recognise and manage epilepsy. Anne explains: “On average we have between 25 and 30 attending each session but once 165 people came along for the advice. We’re a very busy service and we get over a dozen new referrals a month. It is hoped to set up a similar service for the parents and carers of those with a new diagnosis of epilepsy, this would be in addition to an hour long appointment in a new diagnosis clinic.
“One of the reasons we started doing holidays and events, taking patients away together helped them so much. You could tell how great it was for them to be around other young people with similar conditions, and it gave their families more confidence to allow them to do normal things. We organised a day for teenagers in a spa which involved fun, fitness, food and a beautician coming along to provide them with special treats. We basically wanted to say look, we know having epilepsy is naff, but this will give you a treat because you have epilepsy.”
Ex-patients often stay in touch she says, whilst rummaging around to find a picture of one girl had sent them of her sixth form prom, and the team are so bonded to their patients that some have even brought their children in.
Recently, Anne attended Roald Dahl’s Widow Liccy’s retirement party, and she took along a patient and his mum. “The young man blossomed and really got the VIP treatment, he enjoyed meeting Liccy and Qwentin Blake” says Anne. “It feels amazing to be able to do something like this for patients.”
To date Anne states that she has had a wonderfully varied, interesting and privileged career and it’s not over yet!