The Robert Gregory National AKU Centre (NAC) opened in Liverpool in 2012, providing annual health assessments and access to the drug nitisinone to AKU patients over 16 living in England and Scotland. In this week’s blog we introduce Shelley Jones, who took over as Managerial Lead for the NAC in August 2015. Shelley shares what inspired her to support AKU patients and what she hopes to achieve in her role.
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What interested you in working for the National Alkaptonuria Centre (NAC)?
I really liked the fact that it was a specialised service, the only service that looks after AKU patients in the country and the only one of its kind in the world. I had heard of the service, but I didn’t really know anything about AKU. When Pauline left the position she approached me to ask if I would be interested in doing the role. At that point I researched into AKU to find out more about the condition and it was something that appealed to me.
What does your role involve?
A large part of my role is to ensure that all NAC weeks run smoothly. Up to 5 AKU patients will travel to Liverpool to attend the NAC for the first week of each month, so there is a lot of planning to do to make sure patients are well looked after. I help support Hollie, the NAC coordinator during NAC weeks and assist in chaperoning patients to different departments. I also look after the budget and identify and solve any issues with the service should they occur.
What do you most enjoy about your job?
I really enjoy meeting the patients and chatting to them about AKU and how it has affected them. It’s nice to have patients attend for the week, as they open up to you and it really gives you a chance to get to know them. I’ve also really enjoyed learning more about AKU and the impact of this rare disease.
What do you hope for the future of the NAC?
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There are exciting changes coming up, with the NAC moving to the new build next year, offering a nicer environment for patients. I would like to see AKU patients in Wales and Ireland be able to access nitisinone at the NAC, as this is not currently funded. It would be fantastic if nitisinone became licensed and available for all AKU patients.
I also think it’s really important to raise awareness of AKU and the NAC, particularly among GPS so the patients can benefit from better local care. Going forward in the future, we hope the service continues to grow and we continue to do our collaborative work with the AKU Society.
What are your hobbies and interests outside work?
I like travelling to different cities and spending my weekends at Formby beach. I’m a keen Everton supporter and enjoy going to the golf range and playing a bit of tennis, as my daughter is a tennis coach. I also have 2 lovely Jack Russels – they are my babies!
Want to find out more about the services offered at the NAC? Get in contact with our Patient Support Manager, Lesley at [email protected].