Hello, I am Steph, I am the Matron of the Batten’s service in Manchester.

As a newly qualified nurse in 2012 I worked in Stoke on Trent where I trained, and I worked on a surgical and oncology ward. In early 2015 I moved to Manchester, and this is where I worked on a Metabolic ward for 7 years in various roles. While working in Manchester I was able to meet some lovely patients and families affected by not only CLN2 but other CLN’s as well. This is where I began to find my love for not only metabolic patients, but also patients with genetic conditions like Batten disease. When I found out about the Batten team being formed, I knew that it was a job that I would love to be involved in.

I started within the Batten’s team in February 2022. At this point we gave intraventricular enzymes to a small cohort of patients with CLN2.  We soon began to repatriate more CLN2 patients back from Great Ormond Street Hospital. From this point our service grew quite rapidly and after only 12 months our centre had more CLN2 patients than any other centre in the UK.

The Batten team in Manchester is based within the larger Metabolic team, we as a team work closely with the other sites in the UK along with the BDFA. Our team is made up of myself and 4 Batten specialist nurses. We are lucky that we have Dr Ram, who is our neurologist for the Batten Service, along with Dr Ghosh, our metabolic consultant, who oversee our patients care along with an array of other services that help us to provide the best care to all our patients with all different CLN’s.

I find my role within the Batten service very rewarding, and it is a privilege to work with all our patients and families. As the team lead of the service, it means that I can attend meetings where I can advocate for our patients and the treatment that they receive, but also due to the diversity of the role, I am still able to be hands on supporting the team and giving the CLN2 treatment as well as attending our untreated and treated clinics. I feel like this allows me to be able to understand the patient journey better and the effects that having the treatment or not having treatment has on our patients.

One of the things I love about this role is the journey that we go on with our families. Whether that is treated or untreated we are there at diagnosis, we are there throughout the whole journey and we offer support to and advocate for our families. There is so much to learn from our parents and families about how the different CLNs affects different children in different ways and it’s a privilege to be able to learn from our patients and families.

Our patients and families inspire me. This is for various reasons, I have never known a cohort of families and patients to have the strength, resilience and determination to fight a disease like those affected by Batten disease. I find this truly inspiring, and I am honoured to be a specialist nurse and have the privileged to be a part of this.