Calling all AKU patients in England

To all AKU patients and relatives in England,

Can you spare two minutes to fill in the following patients’ survey for us please:

http://www.smart-survey.co.uk/v.asp?i=28422pewil&m=&tiag=1&x=

It has 24 quick questions to answer with yes/no/not sure, so it should take two minutes max.

It’s very important that you fill this in (preferably this week) as it will help us build our application to the NHS for specialist funding to set up a National AKU Centre in Liverpool for at least five years.

Here’s why: the NHS has just announced a call for proposals for its Specialised Services in England: services that help improve the lives of children and adults with very rare conditions. Read about it all here: http://www.specialisedservices.nhs.uk/.

We’re going to apply for the Royal Liverpool University Hospital to become the National Specialist Centre for AKU in England, building on all our work there. If successful, this would mean that the AKU Centre would be able to offer coordinated, high quality and specialised diagnosis, treatment and care for all AKU patients in England. We, the AKU Society, would help organise everything: your travel, accommodation, logistics, etc.

So you, as an AKU patient, would have the opportunity to meet – maybe once a year – the country’s leading specialists, get a full health assessment, advice and free access to the latest treatments – all in one place at one time. No more problems with coordinating your doctors, trying to convince your primary care trust to fund treatment, getting misdiagnosed or the wrong treatment, turning up for endless appointments on different days, getting the wrong advice about joint replacements…

Applying for national specialist status is a long process that, if successful, will take between 12-15 months. So this is just the first phase.

So please fill in the survey this week! We’ll use the information collected to support our application.

Here’s the link again: http://www.smart-survey.co.uk/v.asp?i=28422pewil&m=&tiag=1&x=.

Thanks!

The research is picking up nicely

We got back around midnight last night from a day with the research team in Liverpool. And what a day. I absolutely love going to meet them all in Liverpool. It’s such a buzz. Dr Ranganath, one of the key drivers behind the whole AKU movement, presented the results of his clinical study and research into 44 AKU patients. Fascinating stuff. There’s some really good data there about spinal conditions, age of onset of symptoms, etc – all of which will inform our clinical trials.

We also spent lots of time discussing how we’re going to develop these trials. Getting Slovakia on board will be crucial, because of the high incidence of AKU there. And the great news is that Dr Andrea Zatkova, the AKU geneticist in Slovakia, emailed me today to say that they are thinking of setting up an AKU centre there. That’s extremely exciting.

And to round it all off, we’ve been selected to present to the Faster Cures conference in New York in December: http://www.partneringforcures.org/. More on that in a later blog.

A national AKU centre in Liverpool

I’m really optimistic about the future for AKU. The NHS has just announced a call for proposals for its national commissioning, which is the department that commissions services for ultra rare conditions. We are going to put in an application to set up a specialist AKU centre at the Royal Liverpool University Hospital, building on all the expertise that we’ve been supporting over the past few years. It’s a very long process, which can take more than a year to get approved, but it’s promising.

More soon…