Hi I am Anna the Roald Dahl SWAN Clinical Nurse specialist at Great Ormond Street Hospital (GOSH).
What does your role involve?
I have been in my role at GOSH for just over a year. I support children and young people who have an undiagnosed condition, as well as their families. I meet up with my patients when they are at GOSH to catch up and see how they are doing. I attend outpatient appointments with families if they are feeling anxious about particular appointments or just find it helpful to have someone to talk about the appointment with afterwards. My role is quite varied depending on families individual needs but the main support I offer includes: being a point of call, emotional support, coordination of care (often under so many teams just at GOSH alone), advocating, to be a link between GOSH and their local teams, to be a source of information and practical support and to signpost to other services.
What do you like best about your role?
I now support 54 families and enjoy spending time getting to know the children and young people and their families, and supporting them with their individual needs. Each SWAN child’s group of conditions are so unique.
Do you work with people from many other departments as part of your role?
I work across the whole hospital as the children and young people are seen by multiple teams so I try to coordinate their care where possible and liaise with the different teams involved. I am based in the clinical genetics team though as they see so many SWAN patients and are trying to find a diagnosis with the latest research.
What attracted you to the role?
The uniqueness of the role (this is the first clinical nurse specialist role for undiagnosed children in the UK) and that it felt like a role I could bring my experience of being a Clinical Nurse Specialist (CNS) to a speciality setting, seeing what amazing support they get and using this to help set up something similar for patients who are not under one team.
What were you doing before this?
I was a children’s cancer nurse specialist for seven years, palliative care CNS and before that I mainly worked as a ward nurse on a children’s cancer ward and teenage cancer unit. I have always liked running and setting up support groups for children, adolescents, parents and staff to get together with their peers. You learn so much from hearing first-hand how it feels to have a particular condition or whats it is like being in hospital. It gives me a better understanding and enables me to empathise more.
How does it feel to be in a role that is the first of its kind (focusing on undiagnosed children)?
Its exciting and a privilege to be the first SWAN CNS. It’s a challenge and a steep learning curve as I am in a new speciality and have to get to know virtually the whole hospital as every patient is under so many different teams. I have already learnt so much from the patients and families about the support they would like and need as well as how it feels to have a child with an undiagnosed condition.
How does someone get to see you? i.e. do they already have to be a patient at GOSH?
They would need to be referred by one of their professionals to me by email or letter. They need to be under multiple teams at GOSH.
What do you think some of the challenges of having an undiagnosed child are?
The feeling of isolation due to their child’s condition being so rare and often not knowing anyone else who has the same group of medical problems as their child does.
The fear of the unknown.
The feeling of falling through the gaps as they are under so many teams.
Being overwhelmed by multiple appointments.
Not knowing who to talk to about their child’s different problems.
Supporting siblings when in hospital frequently.
How hard is it trying to coordinate care for undiagnosed children when they might need to see so many different clinicians across a range of departments?
Often this is very hard and complicated due to the consultants’ commitments. It’s a challenge, but I am making some progress.
What would you say to encourage someone looking for support to get them to join SWAN UK?
I explain what SWAN UK is and let them know there is a network of support online and opportunities to meet with other families in a similar situation to them. Even though there might not be another child with the same unique problems as their child what they will find is others who understand the isolation, the fear of the unknown and a large network of people who can support each other through this including having some fun.
What gets you through the day?
Talking to the families.
A nice cup of coffee at some point in the day!
Listening to the radio – music wakes me up first thing in the morning!
When you’re not at work what do you enjoy doing?
Meeting up with friends and family, shopping, baking, going for a run and growing plants on my balcony.