Chief Executive's Blog

Inspiring a new generation

19 March 2015

On Friday I watched a fine evening of entertainment for Comic Relief with my husband and our 15 year old daughter (my youngest daughter was out at a sleepover). We laughed a lot and we cried buckets at the impact of Alzheimer's disease and of poverty and disease in Africa. One of the things which I know had a big impact on us all was how with a donation of £2.50 you could fund a mosquito net and save a life.

The next morning, my daughter advised me that she had donated £5 on-line before going to bed from her own money, on top of the donation we had made as a family. I was incredibly proud.

And it made me think. I remember as a teenager buying the Band Aid single and watching the shocking images broadcast. I remember giving at school for non-uniform day, I also 'Ran the World' for LiveAid, but I don't think I gave enough thought to charity; charities that support people in need, charities that sadly most of us will need at some point in our lives for one reason or another.

Now clearly, my daughters know all about the value of charities, having me for a mum how could they not? I've been into their old primary school to talk about NASS and they attend NASS events with me and see first hand people in need of support.

Looking back though, I wish I'd have done more. I wish in my twenties I'd have done more to fundraise for a special cause dear to my heart.

If you've benefitted from the support of a charity it would be great if you could talk to the young people around you about this. We must inspire a generation of young people to fundraise and volunteer; small charities like NASS really need everybody's help.

If you want to get involved as a family, our Capital Challenge is perfect.

Thank you. I wish I knew back then what I know now. Don't get me wrong, I'm trying to make up for it by doing as much as I can now, not just for NASS but for other charities too, and with a bit of volunteering as and when I can. Big TV events like Children In Need and Comic Relief really give us all a chance to talk to our children and grandchildren about the value of doing something for that good cause close to our heart. We have a wonderful opportunity to inspire a future generation of philanthropists too.

Take care all and thanks again for your support, Debbie

PS I should be having my neck surgery on 24th March (fingers crossed after being cancelled twice already). If I'm quiet for a while, you'll know why....

I'm back in the room ....

11 March

I pride myself on being an effective leader for NASS. I believe that a good leader should have passion, commitment and be accountable. I took the view when I  took this role nearly 4 years ago(!) that I would be very transparent about what I was doing in the role; NASS is YOUR organisation and you should know how it is being run. Being transparent doesn't mean just telling you when things are going well...

It's difficult for me to admit, but I don't feel that NASS has had my full attention this last week or so.   It's been an odd time for me, both professionally and personally.

As I said in my last blog, our trustees have decided that NASS is moving to Hammersmith; it's a decision that was taken in principle way before Raj our new Chairman joined us last June and so has been hanging over us for a while. We are moving next week. We launched our 5-year Strategy at the beginning of this year and once the move is out the way, we can give this our full focus and attention. We've already started work on projects mentioned in the Strategy but it will be great to give this our all.

Personally I've been distracted this last week or so after having my neck surgery postponed last week for a second time. I was sent home from the hospital after seeing both the registrar and the anaesthetist as there was no bed for me. It drained me emotionally, I just felt that I could no longer see an end to some of my pain. My surgery has been rescheduled now and I should go into hospital on 23 March, fingers crossed.

I woke up this morning with a renewed source of energy. I've picked myself up and dusted myself down. It's taken me a few days but I'm no longer going to focus on the negative stuff.  Somebody gave me some great advice a few years ago 'Don't worry about that which you can't change'. Instead I'm going to focus on the good stuff. I'm in a job where I get to help lots of people in pain and lead a great organisation, a great team which offers top quality support for people with AS. Once we've moved we have such a busy programme of work to deliver, all for benefit the AS community.

So, I'm now 'back in the room', and with renewed determination. I'm going to stop feeling sorry for myself and get on with being the leader that I hope you recognise. I did promise transparency!

We all have setbacks and some are much bigger than others. Mine was small but it seemed big to me. I know some of you out there really do have big set backs and picking yourself up time and again can be hard. We're all different, we all respond in different ways. What's important, (after all my chatter), is that when you have a setback you know that NASS is here for you, to listen, guide and help if we can.

Take care all, Debbie

 

I'll be quiet for a while. Here's why.....

27 February

Next week I'm going in to Hull Royal Infirmary for neurosurgery on my neck - the C6 and C7 area to be precise! I've been suffering for a number of years and so whilst I am dreading the operation, I'm also very keen to feel the benefit.  I've been told that I'll likely be out of action for 6-8 weeks, and so of course I'm aiming to be back in six.

It's going to be a busy time for the Team whilst I'm off. Our trustees have decided that we are moving offices to Hammersmith and so the team will be busy doing that as well as all the other day-to-day business of the charity.  It's also a busy time in other ways; NASS is busily involved in many NICE initiatives, Technology Appraisals for AntiTNF, secukinumab and the development of Clinical Guidelines.

All our projects for this year are ongoing - by the end of the year we hope to have launched an initiative for people age 16-24, we're planning Friends and Family events with our 91 physiotherapy branches, our AS and You events for those newly diagnosed are touring the country and we've got exciting plans taking shape for events in Northern Ireland and Scotland. This is the tip of the iceberg and on top of running the Helpline, supporting our branches, fundraising, organising events, producing our magazine.... I could go on. And, we are a team of only seven, including me. Many people assume we are a bigger organisation.

It's a great privilege for me to know that I can have this surgery in the knowledge that I have a dedicated team in place who will continue to deliver our work and I am incredibly grateful for this.

So,if I'm a little quiet on Twitter, you'll know why. The team will likely be moving mid-March and we will keep you very much informed as it happens.  Please bear with us during this time, we will do our best to ensure services are unaffected so long as things go smoothly.

So, no blogs from me for a while but at least now you'll know why. Huge thanks to Team NASS for their support.

Take care all of you.  Best wishes, Debbie

Invisible illness - the benefits of sharing

2 February 2015

At the weekend I was reading a blog written by a Sheffield university student discussing the challenges of a student living with a chronic illness; and an invisible chronic illness. I could identify with much of what she was saying ; the fatigue, getting out of bed when you're stiff and sore, not being able to wear heels, I could go on. 

BUT, here's the thing. When I started with chronic lower back pain in my early 20s I was already living with my husband, he hasn't really known me any different. He looked after me when I got my first iritis flare and couldn't look at the light for days. He was with me, aged 26 (two months after we were married) when my rheumatologist told me that he thought I had something in the Ankylosing Spondylitis family ( I now have a Spondyloarthritis diagnosis). 

And so this weekend blog 'got to me'. How, as a student, do you explain to your friends that you are in pain one day and not the other, when you probably look OK? How do you feel in your teenage years when you can't put heels on with THAT dress? Even in my 40s I sometimes  put them on for an hour and keep my comfies with me because sometimes a dress isn't a dress without a little heel.  How do you form relationships when you have all this going on with your health but most of it is invisible?  How do you explain to your lecturer that your assignment is late because you've been ill, but you look OK?

Of course we know that you need to surround yourself with people who do understand and a good support network, but it's not always that easy.

It's the job of organisations like NASS to ensure that we have materials out there to help you to explain your condition to friends and family. Our Guidebook has an easy to understand tear-out section, just this weekend we posted a video produced by another arthritis organisation explaining AS on our Facebook page. We run a Friends and Family session at our Members' Day and you can bring someone with you to our `AS and You` events.

We do what we can, because we know the struggles you face at any age. We have to help you explain.

What we need is a broader understanding of invisible illnesses. We need a better tolerance. Pain cannot usually be seen on the face and makeup hides so, so much!

It's great to see people sharing their experiences through blogging and social media; it's only this way, by talking more and getting these issues discussed, that people will start to try and understand.

Take care all, Debbie

Exercise - let's give it a try

19 January 2014

For a long time now I've wanted to lose about half a stone. I lost loads of weight last year before being diagnosed with coeliac disease but my experimentation with gluten free baking has seen most of that make it's way back on to my hips!

So, like many I started the new year thinking that I must lose a bit of weight, but more importantly than that, that I must do more exercise.

My role with NASS means that no two working weeks are the same for me and so I don't attend my local NASS branch. I started but then found there were 5 Tuesdays I couldn't do after that etc.....

In 1997, when I was diagnosed with 'something in the AS family' and for now Spondyloarthritis, I was given a NASS Guidebook (it was fab then and it's even better now) and advised to do the exercises in it every day. I'm ashamed to say that I don't (as NASS CEO and 'should be' role model, I'm being brutally honest here)! Whenever I have a flare, my husband I know, although VERY understanding and supportive, would be more so if he thought I was doing more to help myself!

Before Christmas we bought an exercise bike and I set a goal of doing 16K a day. My joints hurt before I started and everything hurt when I finished. I quickly got out of the habit.

So in the new year I've started afresh, with new, more relaxed goals. I will try to go on the exercise bike most days, but I'll do what feels comfortable for me rather than giving myself ridiculous goals which in turn make me hate going on the bike.

It's hard enough to motivate yourself to exercise when you have joint pain as it is; my aim is not to make it so hard that I give up again quickly.

And whilst we are talking about exercise I want to add that I think many people don't understand that exercise is important for people with arthritis. They make a judgement that 'your arthritis can't be that bad if you can play a round of golf' etc. We need to re-educate people that exercise is part of the treatment for arthritis, it's not an indication of the severity of your condition. NASS has a role to play here, to educate the public and we intend to play our part.

I hope you manage to push through your pain to start or carry on with some gentle stretches and do a little exercise. There's so much advice and guidance on our website.

Take care all, Debbie

Fundraising and raising awareness; it's a challenge....

14 January 2015

Heading up an organisation like NASS can be hugely rewarding.I've been privileged to do it for over 3 1/2 years now. But it can also be challenging.

NASS doesn't receive any government funding; it relies mainly on our member subscriptions, fundraising and donations. One of the challenges is that I have to balance the need to raise money whilst being cognisant of not asking the same people from within the UK AS community for money all the time. Most people have experienced or know someone who has, for example experienced the devastating impact of cancer or heart disease, making them likely to donate to such good causes. We all know that AS can have a devastating impact on a young persons life, for life, but the general public do not - and this presents a further challenge, to raise awareness.

NASS has done a huge amount of work in the last 3 years to raise awareness,  and has seen AS featured in the national and local media more than ever before. You'll also be aware of how much work we've done to educate GPs and other healthcare professionals. But it's not enough; there's still a huge need to do more. I want to see AS understood as much as MS (hard to say, time to hear).

So I'm delighted that our new part-time fundraising manager, Amardeep has managed to secure bucket collection opportunities at many train stations in the UK. These collections will allow NASS to raise money from the wider public and raise awareness at the same time.  It's a first for NASS I believe so let's see how it goes. And we're still looking for volunteers to help out so do give Amardeep a call on 020 8948 9117 if you'd like to get involved. NASS has a small team and we need your help.

Raising awareness continues to be a huge priority (amongst many others) for NASS. You can read more about this in our 5 year Strategy.

Take care all.  Debbie

NASS brings in the New Year with a Research and Education Bursary fund

7 January 2015

A very happy New Year to you all. I hope you all had a lovely Christmas and that most of you managed to avoid getting the dreaded bugs that we're circulating.

We had a gorgeous week in a cottage in Yorkshire to bring in the new year. A whole week of relaxation, a few strolls on the beach and plenty of reading. Pure joy; the weather was cold but dry and our Bernese Bisto managed a little beach stroll even in his old age.

Now it's back to work with another bumper-packed year ahead for NASS. Our 5 year Strategy document outlines our future plans but I'm delighted to say that we kicked off the year with the launch of a Research Fund and an Education Bursary Fund.

Whenever we've talked to our members in person or via surveys in the time that I've been with NASS, you've always been clear that your top priority for the work of NASS has been Research.  And that's why in 2013 we engaged with you about what our research priorities should be. Our priorities, which you can read here are based on what you said was important to you.

So it's with great pleasure that we launch this research fund, helping to kick-start major research programmes and facilitate research into helping manage ankylosing spondylitis.

NASS has done a lot of work over the last 3 years to help educate GPs, physiotherapists, osteopaths, chiropractors about ankylosing spondylitis. We will continue to do so but we also wanted to help in other ways to facilitate more learning. Our education bursary fund will do just that. NASS can provide small amounts of funding to help ensure that health care professionals can access further training about AS when they might not otherwise have been able to do so.

I'm really excited about the launch of these funds. Can't think of a better way for us to start 2015.

Take care all, and remember NASS is here for you.  Debbie x

Feeling festive and hopeful...

17 December 2014

I'm writing this blog on my way home from Manchester. I've been at a meeting of the NICE (National Institute for Health and Care Excellence) Clinical Guideline Development Group.  As I write this there is a 'technical' fault with my train and we are delayed so it's now unlikely that I will catch even the last half an hour of the Derby County V Chelsea game.  Come on you Rams (well the title of this blog does suggest I'm feeling hopeful!).

I'm hopeful in lots of ways. NASS campaigned for the production of these guidelines to bring about an improvement in and consistency of care for people with ankylosing spondylitis (axial spondyloarthritis). Whilst the guidelines won't be out until 2016 it is definitely a huge step in the right direction for spondyloarthritis patients.

Another reason to hopeful is the reaction to our AS_it_is campaign this year asking for better access to physiotherapy and occupational therapy for people with AS. I hear on the grapevine that our campaign messages about the need for more physio and OT support for people with AS has reached key influencers in the NHS. Huge thanks to everyone who supported the campaign.  We have to ensure that going forward you are all offered access to regular physio and wherever possible, hydrotherapy. Our 90 branches are still doing a fab job but there's not one available within travelling distance for you all yet - but we're working on it. Extra provision is much-needed.

During this year, the NASS Team lost 3 members of staff, two due to staff relocating and so not being able to stay on despite wanting to stay. I've always been lucky to work with a very dedicated team at NASS and so I worried that our work might dip as a consequence. I needn't have. Sally, Jill and Joe carried us through and our new staff Amardeep, Laura Garbari and Laura Richards are equally dedicated. I really am lucky to have such a team, committed to the NASS cause. This gives me hope for another successful year ahead. People often tell me that they can't believe how much such a small team achieves - a huge thank you to them all.

Our new 5-year strategy is out and so you can now read about our priorities and planned projects. Exciting and busy times ahead.

Thanks to all of you that have supported NASS in one way or another this year and helped make our work possible. The team and I appreciate it so much. 

I hope that you all have a wonderful Christmas and health and happiness in 2015.

Take care all, Debbie

An inspirational lady - Hilda

15 October 2014

Last week I was travelling to a meeting on the train and I met Hilda. She was 92, travelling alone and we got chatting. I learned that she had been a PE instructor, had studied physiotherapy, had played hockey for England, enjoyed being a farmer's wife and had raised a wonderful family of whom she was clearly very proud. I'd assumed at first that she was in her 70s, she looked so fantastic. What overwhelmed me though was her attitude to life and her sense of fun and adventure.

Hilda had been an active fundraiser for Arthritis Research UK; she'd had two hip replacements and was clearly struggling currently particularly with shoulder pain which was hindering her sleep. Despite that though she was challenging herself every day. We talked about the secret to reaching 92 and still being so active. Hilda talked of health and family but what struck me most was her advice to 'Never refuse an invitation'. At 92 she was on her way to meet up with old school friends for a holiday and clearly made the most of life, going to the theatre, visiting family, having 'girly time' with her daughters. And all this despite her arthritis!

Hilda was inspirational and had a big impact on me. I think we could all try and take some of Hilda's positivity towards our arthritis, aiming to live as well as possible and trying 'never to refuse an invitation'. I appreciate that living with arthritis is hard, personally I have days that start with me wondering how I am going to get through them but taking some of this positive attitude has surely got to help.

I do a lot of travelling in my role. It can be very tiring but meeting someone like Hilda makes it a pleasure.

Take care all. Debbie

Oh what a night...

6 October 2014

I'm writing this on the train.  It's 9.45pm and I'm on my way home from our AS and You event in London, one of our special meetings for people newly diagnosed with axial spondyloarthritis, including ankylosing spondylitis (AS).

AS and You went well and I came away with a warm glow, feeling that NASS had helped people in the room understand their AS a little better, and that they would take away hints and tips for managing their AS. I also hope that they will know that they can turn to NASS when they need support. Those who bought a partner or family member will benefit from their nearest and dearest having a better understanding of the burden of AS.  It's great job satisfaction to feel that in a small way we can help make a difference.

So, I was already having a good evening when I hailed a London taxi cab to get quickly to my late train from King's Cross.

The taxi driver was lovely and really interested to hear about the charity I worked for and the condition that we represent.  He said he'd heard of AS but didn't realise the true impact of the condition on a young person's life, for life.

When we got to King's Cross he didn't take the fare but suggested it be used to support NASS's work. How amazing, kind and generous is that?

A huge thank you to the taxi driver. Firstly for being interested and secondly for his generosity.

Oh what a night...

Take care all, Debbie

NASS out and about

8 September 2014

I wanted to get back to using my blog to let you all know what I'm up to as your Chief Executive. I mentioned in my last blog that the next few months were looking incredibly busy for NASS.

This week I'll be in both England and Scotland. On Tuesday I'm going to Aberdeen. Our colleagues at the University of Aberdeen who host the British Society for Rheumatology AS Biologics register are holding a day to focus on AS research.  I will be presenting at the event on the work NASS did last year to collect data about what AS patients feel are the most important areas of research to be addressed.  It's great to know that some of the leading rheumatologists on AS in the UK will be, once again, listening to and taking on board the work of NASS.

On Wednesday I will be in London, spending a full day at NICE. This is a day of training for members of NICE Guideline Development Groups. Many of you will know that NASS has campaigned hard recently for Clinical Guidelines covering AS to be produced by NICE. The process starts this week and is likely to go on until Summer 2016. Hopefully the end result will see a higher, more consistent standard of care for people with spondyloarthritis.  I will do my best to represent the patient view on the Guideline Development Group.

At the end of the week, I'll be back in London for a meeting with the Association of British Pharmaceutical Industry. On Saturday it's the NASS full Trustee meeting in Bath followed by the Don't Turn Your Back On It (DTYBOI) initiative in Bath city centre.  Out trustees will be considering the strategic direction for the next 3 years and the associated project work I am recommending, based on all the data we collected from you last year. 

The DTYBOI campaign is aimed at raising awareness about Inflammatory Back Pain and reducing the delay in diagnosis for AS/Axial SpA.

So that's this week in a nutshell.  And that's just the work that I'm doing - Team NASS are also out and about and keeping those vital NASS services running.

Take care all.  Debbie

The thoughtfulness of others... Thanking people who often think of NASS at a difficult time....and a busy few months ahead

28 August 2014

It seems that I picked the worst 2 weeks of summer to take my holiday. We stayed at home this year and we've had 2 weeks of cloud and rain with a little ray of sunshine every now and then. As I write this it is positively cold!  Not complaining though as it's been a good time to chill, read books and get ready for a busy few months ahead. September, October and November are already looking pretty hectic. My diary is pretty manic ( but all for a great cause :.)).

In September I will start working with NICE on clinical guidelines for spondyloarthritis. You will all recall how NASS has campaigned for such guidelines in order to improve standards of care for people with AS / Axial SpA.

We will also be submitting our comments to NICE for their review on Anti TNF guidelines - thanks to all who completed our survey and helped us with that. 

I'll be presenting to lots of rheumatologists and physiotherapists in September on the latest data we have and our research strategy, hoping to inform improvements in care. September also sees the first NASS `AS and You` event for newly diagnosed patients. Really looking forward to those, taking place in Birmingham, Glasgow and London in the next couple of months.

I'll tell you more about my work during October in a future post but can't miss this opportunity to tell you that we will be holding another Parliamentary event in November, campaigning for better access to physiotherapy and thanking many of our fabulous supporters.

So, I'm back from my summer break. I did want to mention this though. I took an extra day's holiday to attend and read the eulogy at the funeral of a very special lady. I used to play with my cousins at the home of Mrs Norah Asbury as a little girl. She was part of our extended family, mum to my dear Auntie Maralyn. When I visited Norah just a few weeks ago, at age 96 she still recognised me and gave me a wonderful hug and a smile. What a treasure. 

Anyway, it means so much to me that her family chose NASS to receive donations in memory of Norah. I am overwhelmed at this thoughtfulness. I wish to thank my loved ones for thinking of NASS and people with AS at this difficult time. I also want to take this opportunity to thank others who think of NASS when writing a will or have lost a loved one. Words from me can never express how grateful we are....

Take care all, Debbie

NASS: a reflection - 6 August 2014

Just a few weeks ago we had the NASS Annual Members` Day and AGM. Before that I was working on the 2013 Annual Report; both tasks presenting the opportunity to reflect on the charity's journey. I can only reflect on the 3 years that I've had the privilege of leading the charity, where it's come from and to.

Inheriting a charity with firm foundations is always a good start. Working with a charity that has a dedicated supporter base is a blessing. Working with a team that wants to expand and develop is a manager's gift.

We've worked incredibly hard in the last 3 years to raise the profile of NASS and AS. We've travelled up and down the country, taken every opportunity to address large gatherings, worked with the media, embraced and expanded our supporter network, courted social media, re-branded, been recognised for our innovative approaches (Back to Action App & 'Meeting in a Box' GP education) and hopefully we've tempted more and more of you to get involved with this great charity.

How do we know it's worked? Our supporter base has grown. Our membership has remained constant whilst other such organisations have seen a decrease. Our Helpline calls have quadrupled in the last 3 years,our website hits even more so. Take a look, the statistics speak for themselves:-

  • 2011 saw 50,000 website hits, 2013 saw 250,000 (149,000 unique)
  • We had 1,200 Helpline enquiries in 2011 -  with 4,000 in 2013
  • Patient guidebooks - 5,000 sent out in 2011, tripling to 15,000 in 2013
  • NASS branches went up from 83 in 2011 to 91 in 2013

And the numbers continue to grow....

Our App has been downloaded over 15,000 times all over the world. Our GP awareness project was Highly Commended by the British Society for Rheumatology.

We've done all this (and much much more) without increasing the Team - that says so much about the hard work and dedication of our Team NASS.

We couldn't do all of this without the support of our membership and fundraisers. Thank you.

And we now enter another era. We have a new Chairman, Raj Mahapatra. We are in the process of producing our strategic plan for 2014 - 2017 based on what you told us were your priorities last year. I'll keep you posted as always. Working together to ensure that NASS and the services we provide are the best they can be is our ultimate goal.

Take care all. Debbie

AS and You - 25 July 2014

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

Chief Executive

Debbie Cook