A Patient's Perspective: Best Practice 2017


On 18th and 19th October, Lesley, our Patient Support Manager, and Carol, one of our AKU patients, went to the Birmingham NEC to run a stand at Best Practice 2017. In this week’s blog, we find out how they got on. 

Best Practice – a conference, exhibition and networking event for the primary care sector – has been running for five years. With over 5,500 GPs, practice managers, GP federations, nurses and CCG professionals all gathering in one venue, it is the primary care community's favourite event – and this is the third year it has incorporated nursing.
This was the first time we’d had one of our patients man the stand. At previous conferences, delegates coming to our stand had asked if any of us had AKU. With this in mind, Lesley approached Carol, asking her if she’d be interested in joining her on the stand. 

Lesley and Carol were thrilled with the responses they got. All seemed very eager to learn about AKU. Indeed, many conference delegates, never having heard of the condition before, were instantly struck by our pictures of AKU symptoms. Several nurses seemed keen that Lesley also put on a training session for their colleagues.

Lesley and Carol also had the opportunity to explore the exhibition, meeting companies and charities. Lesley visited a number of stands with possible relevance to our patient group, including Arthritis Action, Heart Valve Voice and Arthritis Research UK.

Lesley described Carol as an absolute star:

‘She was on her feet pretty much all the time for the two days. I knew Carol’s back was aching. The delegates who came to the stand were really keen to speak to her. They valued having a patient who could share her story, allowing them to hear and see how AKU really affects someone living with the condition. 

It worked really well - I came from a medical and scientific background and Carol provided a personal perspective.

I would say that both Carol and I have learned a lot over the past two days. In the hotel, I was so impressed when I saw Carol looking through the menu, working out protein values and having to think about what she's eating all the time - something I just take for granted.’


Here, Carol gives her account of Best Practice 2017:

‘Lesley and I were manning a stand at the exhibition to raise awareness of AKU. With its colourful literature, leaflets, pens, pads and low-protein cookbook, our stand was fairly eye catching!

The centre-piece, though, was our large poster showing the symptoms of AKU: black cartilage, blue ears, dark spots in the eyes and dark urine. The delegates stopped in their tracks. Shocked and dismayed, many asked that all-important question: What is it?

First, Lesley talked about the history of AKU, its causes, symptoms, advances in research and the wonderful NAC in Liverpool. Then she introduced me, a patient with AKU. They wanted to look at my ears (for signs of ochronosis) and eyes (for dark spots). I described my long journey to be recognised, and how others had fought for support. They left with our leaflets and e-learning cards, enabling them to find out more.

I am convinced that Lesley is Superwoman in disguise! She does not stop. Her desire to promote us, to seek out new contacts and to find more help and support for patients is relentless.

Thank you to the staff on the Arthritis Action stand for the stress ball. This will come in very handy during stressful moments, and will work those arthritic fingers. Thanks also to the Bio Oil stand for their useful advice and information.

This is the first time I have volunteered to help the AKU Society – it won’t be the last. I found it a rewarding and uplifting experience. People do want to know about AKU. They do want to hear about our stories and journeys. They want to learn, understand and help.

If you have any spare time, even if it's just a couple of hours to volunteer and help raise awareness and spread the word, then please contact Lesley at the AKU Society.’




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