Chief Executive's Blog

 25 July 2014

AS and You

Believe it or not I've been in my role leading NASS for over 3 years now! How time has flown.  During those 3 years I've had the privilege of meeting many, many inspirational people. I've also met lots of people at NASS events who've told me 'this is the first time I've ever met anyone else with AS'.

Now given that there are about 200,000 people in the UK with ankylosing spondylitis; it is not a rare condition, this has always surprised me.

It's been so rewarding for us all at NASS to be able to put on events which connect people with AS; to see people making new friends, sharing their experiences. Sometimes I observe and I know in my heart that some of these connections will become friendships and some of those friendships will last a long time.

Of course it's also been hugely rewarding to see people connecting on social media. Many of you will recall that one of the first things I did was to launch NASS well and truly into the social media space. Since then we've watched with delight as people connect up virtually and support one another.

This year we'll be taking this a step further with the launch of our `AS and You` events. Specifically designed to bring together people from a particular area with a recent diagnosis these events will create an informal space for people to meet, learn, be equipped with tools to cope with their condition and then to connect with others; thus resulting in even more connections and hopefully some local social networks of support.

I look forward to meeting you at our future events. Keep an eye on our website to find out when we might be in your neck of the woods,  we're regularly out and about.

Take care all, Debbie

NASS Members' Day - getting together, supporting one another...NASS the community

If you've ever wondered whether it's worthwhile coming along to one of our events, then the feedback from this year's Members` Day should help make up your mind.  We've been overwhelmed by all your positive comments.

From the TweetUp in the morning to Nordic Walking, essential stretches and Tai Chi in the afternoon, you all seem to have gotten so much out of it. Much more knowledge about managing AS, including tips on pacing yourselves. You might even have understood some of the genetics associated with the condition (although that is a complex topic! - interesting though).

Many of you have written in to tell us how useful all the new information was. Many of you just loved being able to chat with others in a similar situation. Some of you are now off to try a NASS Branch physiotherapy session

I wasn't able to get to our Friends and Family session as it ran at the same time as our AGM but I understand it was a fantastic session which spilled over into coffee time. And how could you miss the chance of a 1-2-1 appointment with a top rheumatologist or physiotherapist.

All of this incredible feedback is so rewarding for the NASS Team; just knowing that the day's content will help you going forward is the essence of why we are here. Personally I get such a buzz just seeing all our members connecting, sharing, supporting one another.

We're in York next year. It's a day not to be missed.

I also had chance to see NASS at its best the week before our Members' Day when Steve, my husband, and I were invited to the NASS Derby Branch 30th Anniversary dinner. The room was buzzing with chat about 30 years of the branch, 30 years of support for people in the Derby area with ankylosing spondylitis. What a community. It was a lovely evening and the essence of what NASS is all about; community.

I recall my first association with NASS. Age 26 I probably wouldn't have popped along to an event. I was in denial and didn't feel I belonged to the NASS club. Knowing what I know now, I'd have done things differently. Join in when you can. NASS events are fun, inclusive and will equip you with the tools to manage your condition better. We've got lots of Newly Diagnosed events coming up, so watch this space. There are other opportunities to get involved with NASS too. Look forward to seeing you soon.

Best wishes, Debbie

National Volunteers Week - a big thank you from me...

2 June 2014

When I'm out and about representing NASS, people often are amazed at what such a small charity with a small team like NASS is able to achieve. The explanation for this is simple - I have a great Team. Today though I want to talk about that extended Team.

This week is officially Volunteers Week. NASS couldn't do all it does without our army of dedicated volunteers whom I thank from the bottom of my heart. NASS has 91 physiotherapy branches, and none of these could operate without someone to organise the sessions, collect the money, liaise with the physio, organise social events- our branch contacts do an amazing job.

NASS also manages to provide such fantastic healthcare advice thanks to the time our medical advisors give up to support us. They regularly volunteer their time to do such things as give a presentation, answer a complex helpline query or advise us on projects.

Just this week, we have Camila in the office - giving up her time in between her studies and helping us with project work.

So a huge thank you to them all - NASS really wouldn't be what it is without our volunteer support. A small charity with a big reach. A small charity with a big team of volunteers.

London Bridges Challenge (and the BAFTAs)

21 May 2014

So Sunday was a glorious bright, sunny day in London and the Thames walkways were awash with orange t-shirts. Over 80 people took on the NASS London Bridges Challenge - the majority of whom did the 8+ mile walk.

My husband Steve and my daughters Scarlet and Daisy, aged 14 and 11 all completed the challenge with me.  It was a great way for us non-Londoners to see the city.

We were stopped along the way by people asking why all the orange and what is ankylosing spondylitis? So not only did we raise money for NASS (together we have already raised £8000!) but we also raised awareness.

Indeed later on in the day, my family and I joined a crowd in Covent Garden to witness the glamorous celebrities arrive at the BAFTAs. If you watch on IPlayer, during the opening titles you can see our NASS orange t-shirts in all their glory as Bruce Forsythe gives us a wave!!!

The walk was a huge challenge but a pleasurable one. I really struggled towards the end, mainly due to having lots of ongoing problems with my feet. How our oldest (Bill) and youngest walkers (our Daisy) did it I just don't know.

If you still want to support all those that took part, many despite their AS, many supporting someone with AS then you can still donate by texting NASS14 £5 to 70070 - thank you.

I thoroughly enjoyed meeting all our wonderful supporters on the day - it's the best part of my job.  Hopefully we'll see more of you next year.

Best wishes, and thanks for your continued support. Debbie

The NICE (National Institute for Health and Clinical Excellence) Clinical Guidelines process

6 May 2014

Last week, I attended a stakeholder meeting with NICE in Manchester to look at Clinical Guidelines for Spondyloarthritis.

NICE clinical guidelines make recommendations to the NHS on treating and caring for people with specific diseases and conditions. Having a clinical guideline for spondyloarthritis will mean there will be clear guidelines that GPs and rheumatologists can follow so people in the UK with AS should get more consistent care.

NASS has been calling for these guidelines for sometime (specifically in our AS it is campaign).

The spondyloarthritis guideline will include ankylosing spondylitis and axial spondyloarthritis - as well as psoriatic arthritis, enteropathic arthritis and reactive arthritis.

The meeting was attended by clinicians, patient group representatives, radiologists and NICE representatives, all with a special interest in this area. It focused only on the scoping of the NICE Clinical Guidelines process.

So, it's great news that NICE has started the process. But we were advised that this process, which will be very evidence-based, is likely to take 2 to 2.5 years. So I thought it very important to manage your expectations!

The next step is for NICE to recruit its Guideline Development Group. This takes place between 20 May and 18 June. Of course I will apply to be on it but there are no guarantees that I will secure a place.

In the meantime, the NICE update of the anti TNF therapy multiple technology appraisal will run separately through 2014 and we hope this will report on schedule in Janury 2015.

We will keep you informed every step of the way on the NASS website. Be assured that NASS will do their very best to represent the voice of people with AS in all we do.

Take care all, Debbie

A week of rheumatology

28 April

This week will be busy for NASS. We have a stand at the British Society for Rheumatology (BSR) conference in Liverpool. This conference attracts over 1600 delegates from the field and so is a great opportunity for us to showcase our work and distribute resources and information about AS.

It's always a hectic week for me because all of our partners and colleagues are in one place at the same time; making it the ideal time to fix up meetings and progress ideas and projects.

On Monday evening I have a meeting about the BSR anti TNF Guidelines. Tuesday is packed with meetings and there are many SpA educational sessions I want  to get to, and it's the same on Wednesday and Thursday.

Jill and Sally will split the week to attend and on Wednesday Sally will be presenting our poster on the NASS Patient Survey. I will be representing the Arthritis and Musculoskeletal Alliance ( ARMA) on Wednesday on a panel talking about MSK and the need for a clinical network.

During the conference I have been selected by the BSR to be their 'rheum-mate' and so will be tweeting under @RheumatologyUK - look out for my tweets signed off '^DC'. Other rheum-mates are @JamesBateman and @DrStephLing. Lots of RTs from the tweeters out there would be great - thanks in advance.

I'm staying on on Thursday night as on Friday it's the first NICE Clinical Guidelines Stakeholder meeting in Manchester - hugely important.

Goes without saying that I'll be desperate to see my family on Friday night, but in the meantime there'll  be a lot of good rheumatology learning and sharing going on and much about AS.

Take care all ( and enjoy next weekend's bank holiday).  Best wishes, Debbie

Do you get nervous for hospital appointments? I do sometimes...

23 April

Can't always explain why.

Last week though I was nervous and I knew exactly why.

I've  been having problems with the discs in my neck for the last 4 four years. I'd had a nerve root block injection 3 years ago and after that had sort of accepted my  dull neck and arm pain often accompanied by a loss of use of my left arm and fingers. In January this year I was once again struggling with it badly when I saw my gastroenterologist. I've blogged before on how fab he is, treating me as a whole person. He advised me that I couldn't continue on like this, ordered an MRI and then referred me to a neuro-surgeon.

I felt a bit excited. Something might be done.

Then I was told it was an 8 to 16 week wait to see the surgeon. I got an appointment for 7 weeks later. It was last week. I was nervous because, after all this time, I was starting to feel desperate. I was worried that I might be disappointed, told that nothing could be done.

I was called in first of all to see the neuro physiotherapist. She spent about 45 minutes with me. She was brilliant. She put me at ease, explained my MRI very clearly, examined me and seemed to understand my desperation. By the time the surgeon came in to see me, I had relaxed a little. It was a great appointment.

And, I learnt to have more of an open mind. After waiting so long to see the surgeon, my heart sank when I wasn't called into his office to start with. But if I had to rate my experience, I'd give it a 10/10. In total, I must have been given an hour of their time and the way my appointment was handled probably made the most of everyone's expertise.

I'm not saying I won't be nervous for my next appointment. I think it's quite usual  to feel anxious when you are taking up the time of a clinician. I will be more open- minded though next time, and judge my appointment after it's conclusion and not depending on whose door opens first and what title is on it!

(Thank you to the surgeon and physio involved in my appointment at Hull Royal Infirmary last week). We should celebrate the good in our NHS.

Take care all, Debbie

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

Debbie

'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