Chief Executive's Blog

Doing what we set out to do

4 April 2014

Last week I was delighted to be presented with our 2013 website statistics. They show that during 2013 NASS had 223,085 visitors to our website, of which 148,145 were unique visitors.  This compares with 146,720 visitors to the website, of which 94,534 were unique visitors in 2012. This represents a 57% year on year increase in traffic.

The stats are great, and 2012 was a significant improvement on 2011 too!

It's wonderful to see how the hits to our website have risen dramatically. People have found NASS and therefore have had access to good, credible information. Who knows, they might have landed with NASS thinking they could have Inflammatory Back Pain and thus gone on to pose the question to their GP.

I have always promised that NASS will do its best to raise the profile of AS and you know how passionate we are about our education work with GPs, chiropractors, physiotherapists,osteopaths - all this work aiming to reduce the current, and totally unacceptable delay from symptom onset to diagnosis of AS of 8.5 years!

In the last two weeks alone NASS has featured in two national magazine articles about AS - this work has to be, just has to be raising awareness.

In time, we should know whether referrals from GP surgeries to rheumatology clinics have gone up. In time we hope to see real evidence that the delay in diagnosis has reduced. In the meantime I am happy that the data we have tells us we are doing what we set out to do ( and hopefully doing it well). Our GP awareness page shows you all the AS education that's taken place. Our Media page shows you the increased coverage AS has received. We're doing what we set out to do - raise awareness and educate ( amongst other stuff). And, we will continue to do it with the passion and vigour that you've come to expect of your charity, NASS. There's more to do, but  I'm chuffed on reflection with what we've managed to do so far with your support - thank you.

Take care all. Have a great Easter. Debbie

So what do you say when someone asks "How are you?"

25 March 2013

Yesterday, I was on a call with a colleague; a great rheumatologist and also a NASS Trustee. "And how are you Debbie " he asked.  I had 3 options really in terms of my reply:-

1) Fine thank you

2) Not too bad

3) Well I'm struggling a bit. Managing to keep going whilst I await appointments with my rheumatologist and to see a neurologist. I'm stiff and sore. My neck and arm hurt most of the time, I keep losing feeling in my left fingers. I wake up exhausted most days but usually get better as the day goes on until early evening. It's not just my back that hurts any more, it's as much my hands and feet.

I went with "not too bad" and instantly felt pathetic and miserable. In a second I chose to sort of be honest but I felt like a mood-hoover.

My dilemma is that I want to come across as bright and bubbly, but then I feel the need to be honest with those who know that I struggle at times.  What I don't want to become though is that person where nobody asks, "so how are you" because basically they don't want to hear your moans and groans. And I don't blame them.

I also felt guilty because I know that many are much, much worse off than me.   I still manage to work, have the support of a loving  family and friends, have a great rheumatologist and so far have received, in the main, great healthcare.

I'm not suggesting we should all go around saying that we're fine when we're not. Absolutely not. I'm just sharing my thoughts in case it helps. Some of you might feel the same way.  I heard of one lady who put either a happy or sad face sticker on her fridge in the mornings so that her family didn't have to ask, but knew when to be extra sensitive - I thought it was a good idea.

Of course we should always be very honest with our rheumatologists. We know that many of you say you're fine, probably because you've forgotten what it's like to be pain free.

Take care all, Debbie

NASS Chief Executive (but still same old me)

19 March 2013

At the last NASS Trustee meeting, it was agreed to change my title from Director to Chief Executive. The term Director comes from the original NASS constitution.

It's not a promotion, it's purely a change of title. I've always tried to lead our fine organisation as a CEO would, and that will continue.

Sometimes when I'm on a programme to speak, people will list me as the NASS Chief Executive anyway ( then I've worried that people might think I'm the one going round making up a new title!).

Sometimes in my work, I meet with people who want to know that I lead the organisation; they want to know that I am empowered to make decisions - that's the real world. My new title makes it absolutely clear what I do, and that the buck stops with me.

So, my Twitter name has changed to @NASSchiefexec. The website will still contain references to me as Director as we're not going to change articles from the past. Our priority has and always will be to support you in the here and now.

So, new title, same old Debbie :.) But now, you're all fully informed as I try to do always.

Take care all, Debbie

AS in the media - Adam Rickitt's story

11 March 2014

So, lots of opinion about Adam Rickitt's article  in the Daily Mirror at the weekend. Some are really happy that once again AS has featured in a national newspaper, helping raise awareness about the condition. Some feel upset that the article contained some inaccuracies about the condition.

Our Facebook page and Twitter accounts were buzzing with opinion.

So here's my view. I read the article and was disappointed that it contained inaccuracies about AS - mainly, I was worried that it would cause unnecessary anxiety amongst sufferers.  But, I was also pleased to see that AS was being talked about in the media.

Adam has his own way of managing his AS. If one thing in life is certain, it's  that we are all different, and so we handle things in our own way.  And AS affects people in different ways - we have to accept that.

Sure, it would be better to see factual reporting about AS, but if you're reading this blog it means that you are connected to NASS and so you have access to the latest, factual, reliable information in the UK about your condition. That's what's important - that you know where to turn.

We cannot control the media. We are always grateful when celebrities talk about their AS - it helps sufferers to identify with them, raises awareness and also gives people support in reading the stories of others. Over the past couple of days we have been contacted by journalists from other publications who are keen to cover the subject so we know that Adam's story has raised interest in the press about the condition. Pick Me Up! magazine will be featuring an AS story from a NASS member in the 20 March issue.

We wish Adam all the best and look forward to perhaps working with him in the future.

Remember that whatever you read about AS, we are all different and remember to come to NASS for the facts and information and support.

Take care all. Debbie

NHS Change Day

3 March 2014

NASS has launched its NHS Change day campaign. I've blogged before about the NHS; sometimes based on my own experiences, sometimes based on the work that I see in my role at NASS.  My own personal view is that our NHS should be celebrated, that it's a wonderful institution. Generally I think that there is only a small minority within the NHS that let it down (but that it's human nature to focus on our bad experiences). I also think that NHS managers and staff are under a huge amount of pressure from on high to meet targets and implement the latest 'change' programme (I'm a fan of change by the way but implemented properly and with ownership and collaboration).

NASS knows from our audit of rheumatology departments that care for people with ankylosing  spondylitis across the UK is variable. We know that in some places it's excellent and in some places it needs improving and that's a goal we work towards.

When NASS surveyed our membership last year we found out what was important to 1630 people with a diagnosis of AS.  And, one of the things that's apparent is that they want to be asked by their rheumatologist what's important to them, the patient in terms of managing their AS. It might be getting back to work. It might be attending their daughter's wedding. It might be feeling able to make it to a weekly Thai Chi class. It's an individual thing.

And so that's our NHS Change day campaign. To ask healthcare professionals to commit to asking their patients about their personal goals. Small things make such a big difference and to me that's what NHS Change Day is all about....

Take care all


'You're a whole person' - the NHS, the great and the not so great...

7 February 2014

About 3 weeks ago, I went to see my gastroenterologist for a coeliac checkup. I've been having problems with the discs in my neck for 4 years and I was struggling at the time with neck and arm pain. I wasn't intending to mention this - I was seeing a gastroenterologist, not a rheumatologist or a neurologist. Spotting my discomfort, the wonderful Dr Moss asked me what was wrong. I told him that I wasn't  planning to mention it as it wasn't why I was there. 'You're a whole person' he said, duly examined me and referred me for an urgent MRI scan. Wow! He was interested in all of my health, not just his specialty.

Now I work as NASS Director with the most amazing clinicians, whom I am sure take this approach. But as a patient, based on some (not all) of my experience, this was fantastic - the NHS at its best.

I went for the MRI scan on a Sunday night owing to the hospital catching up on a 6 week waiting list for an urgent MRI. I was more than happy to go on a Sunday, desperate in fact.

My appointment was for 9.40pm. I was asked to change into a gown at 9.30pm. I was then left in a cold room on my own until 10.20pm. Nobody came to explain the delay, which I know can be avoidable. When the radiographer eventually came to me he said only my name and then nodded towards the MRI table for me to get on. I hate having an MRI at the best of times. And in those couple of hours at that hospital I saw a glint of what lets the NHS down. Based on an experience with just two people I came away disappointed.

I am a huge supporter of our NHS. It is filled with the most dedicated, caring individuals who go over and beyond. I see this every day in my work. Sadly there are always a few that let it down, and it's this that gets media attention. Let's focus on the good, I certainly wouldn't want to be without it.

Take care all, Debbie

Think small in 2014

My first blog of 2014. A Happy, healthy New Year to you all.

2013 ended on a sad note for me; I lost my Granny and a very special Auntie on 21st and 23rd December. Both women were an inspiration to me in different ways; strong women, the heart of their families.

NASS has been chosen as one of the two charities to receive donations in memory of my Granny; I was very touched by this gesture, really touched.

All charities do fantastic work. It's so great though when people remember and support smaller charities, especially at such a difficult time. Small charities, less well known rely on this support.

And it's so easy. Just recently I was talking to a group of my nearest and dearest about how they could support NASS through Give As You Live when doing their on-line Christmas shopping at no extra cost to them. Do your friends and families know about NASS and how they could support people with AS. Or indeed do your family know there are such easy ways they can support charities?

So, back to 2014. I wish you a great year. Thanks for continuing to support NASS,  a small charity close to all our hearts.Auntie Rita

Granny MabelAnd, speaking of matters of the heart - I'd like to dedicate this blog to Granny Mabel and Auntie Rita .....

Take care all, Debbie.

My older blogs are in the Members' area of the website if anyone would like to read them.

Chief Executive

Debbie Cook