The National AKU Centre (NAC) opened its doors to the first AKU patients back in June 2012. It is now 4 years on and the NAC continues to grow and develop. Our Patient Support Manager, Lesley has been there from the very beginning and remains an integral part of the centre. In this week’s blog she discusses the key developments over the past 4 years and her hopes for the future of the NAC.

I can hardly believe four years have passed since the NAC opened on 18th June 2012. It was a new venture for all concerned and that first week went surprisingly smoothly. Perhaps that was because only three patients attended during the first week, allowing all concerned a gentle introduction to the work involved.

I have seen quite a number of changes over the four years. In that time we’ve had our fair share of NAC co-ordinators at the hospital. I’m relieved we now have Hollie permanently in post ensuring the smooth running of all the appointments and assessments.There have been changes to the schedules too. Much of this has been influenced by the feedback given from patients attending the NAC. The inclusion of pain management has been particularly significant.

When the NAC first opened all patients stayed on the ward in the hospital. Last year a decision was made to have NAC patients stay in a local hotel overnight and go in and out of the hospital for their assessments on a daily basis. This was definitely a positive move, I have noticed patients appear to socialise with each other more in the hotel and can have meals together in the restaurant. Those patients who require a hospital bed because of their health needs can still of course be accommodated.

In early 2013, we started to offer support visits as an extension of the NAC in Liverpool. The face-to-face visits provide an opportunity to discuss anything around the centre, such as future visits, nitisinone, and blood and urine tests. The value of these home visits cannot be underestimated, as for us it’s a clinically useful intervention, an invaluable teaching tool and an opportunity to provide support. It has also given me the opportunity to meet patients in a more relaxed and informal setting, where it is often easier to talk about any personal issues or problems.

What have you learnt over the last 4 years while working at the NAC?

Not only has my knowledge and understanding of AKU grown over the past 4 years but, it has also enhanced my awareness of the challenges and difficulties people living with a long term health conditions face. I’m only too aware of the difficulties faced by our patients when it comes to accessing services such as physiotherapy and pain management in their local area. It really is a post code lottery for many of them struggling to manage their symptoms once they return home from the NAC. It’s important to have a team of people who know about your condition, understand what you’re experiencing and want to listen to you, such as we have at the NAC. This isn’t always the case for many patients with rare diseases. Whilst many of our GP’s are very good, there are those who aren’t prepared to find out more about the rare conditions their patients have and lack an understanding of the issues they face and support they need and, that’s why it’s so important to have specialist centres.

Any highlights?

I didn’t join the AKU Society until after the Department of Health agreed to fund the NAC so, I wasn’t part of the initial application process. I do however feel privileged to have been part of the NAC since the doors first opened and to see the same faces returning each year as well as new ones.Robert Gregory was one of those first patients to attend the NAC in June 2012. It was his selfless determination that helped bring about the NAC. Sadly he is no longer with us however, one of the highlights for me was knowing he saw it all come to fruition and I had opportunity to meet him. Although the NAC opened to patients in July 2012 the official opening didn’t actually take place until early 2013. The real highlight was having Robert there with us on the day and knowing what it meant to him after all those years of hard work. What a wonderful testament having the centre named after him.

What challenges have you had to overcome?

Of course things haven’t always gone smoothly. Some months have been more difficult than others. Appointments running behind schedule, timing of meals on the ward, the sheer logistics of getting people to so many departments across three different sites in Liverpool not going as planned. I know what they would have said to me when I was serving as a nurse in the Navy, ’it’s all character building’. Despite all this nothing ever seems to deter our patient group; they just take it all in their stride and accept whatever’s thrown at them.

One of the more recent challenges has been trying to get patients to the NAC who are not able to use public transport because of their physical health and, have no other means of getting to Liverpool. Although in England we do have NHS transport, depending on where you live the process for requesting this is very different. This process has also got a whole deal more difficult since the implementation of Clinical Commissioning Groups (CCG). We now have three patients who require transport and I’m sure this will increase in the future. The one consolation is, when it comes to the person’s next visit, at least I’ll know what the process is for their particular CCG!

What are your hopes for the future at the NAC?

The whole team involved with the NAC including myself have learnt a lot over the past four years. I am sure that the NAC will continue to grow and develop. June 2016 saw two of our patients returning for their fifth visit and new patients continue to be referred. The team in Liverpool are understanding more about the natural history of the disease and this can only continue to enhance the service offered to people with AKU. In the long term I would love to see the NAC have its own purpose built building, and become a centre of excellence not just in the UK but, a centre recognised around the world for its work. I continue to fight for our Welsh patients. The application process for them to attend the NAC can be a long and complicated process and, they are not currently funded to have nitisinone. I look forward to the day when they can have the same easy access to the NAC and all that it offers.

Thank you for sharing your experiences with us Lesley. It is amazing to see how the NAC has grown over the past 4 years and the team will continue to support our growing community of patients. If you would like to find out more about the services offered at the NAC or would like to request an individual support visit, contact