Chief Executive's Blog

The real buzz of doing something for charity

11 November 2015

After our second daughter was born, over 10 years ago I did the Race for Life to raise funds for Cancer Research. I cried all the way around the course pretty much, as I read the tributes on the runners' t-shirts. It was an emotional but hugely rewarding experience.

What happened to me in the decade after that? Busy family life, work demands, pain. My neck pain has overwhelmed me these last few years but following surgery earlier this year, (touch wood), it's much better and I can cope better with my inflammatory pain.

Don't get me wrong, I haven't done nothing for charity in that time - I've had a couple of coffee mornings during those years, raising much-needed charity funds but nothing to really challenge me. And for me personally, I needed a challenge, I had to prove to myself that 'pain' would not define me.

Fast forward to last Saturday. And woo hoo, my daughter Scarlet and I ran the Robin Hood 10k trail run. I've raised over  £200 for NASS (it`s not too late to donate) and Scarlet has raised over £400 for Myeloma UK. What a fun time we had, covered in mud and soaked to the skin, and both of us were emotional at the end of the run (we're a bit like that :.)), at the thought both of what we'd achieved but also what we'd managed to raise for worthwhile charities. The buzz was immense. I'm hooked!

What I'm basically saying is this; whether it's a sponsored walk, a coffee morning, a swim, you name it, the list of what you can do to raise funds for charity is endless. It's SO rewarding. And next year is a great time to go that extra mile for NASS. We're going to be 40. That's 40 years of supporting people with this horrible condition that steals good days from families. We can only continue what we do with your support. And you'll feel fantastic afterwards, knowing that your efforts helped make our work possible. Do give it some thought - I promise it'll make you feel good.

Thanks to those that have sponsored me so far, I am very grateful. Take care all.


A new challenge for me

3 November

When I had surgery on my neck at the end of March it tested me both physically and mentally. I completely underestimated beforehand what impact the surgery would have on me and for how long.

A few weeks after the surgery I began to focus less on the discomfort and more on what I wasn't able to do that I thought I'd be able to do by then. I'd lost a lot of my independence; I was unable to walk very far, I couldn't drive, I was very tired. I became quite low.

Recognising my decline I tried to focus on the future. I'd had nerve-related pain in my neck and arms for 6 years prior to my surgery. I've had lower back for the last 20+ years. I decided that I'd lost enough of my life to pain. I'd spent too much time getting upset about what I couldn't do. Having this surgery and 'sorting out my neck pain' had to be worth it. I decided that once I was much better I would make up for lost time.

Whenever I have a flare I secretly chastise myself for not doing enough exercise.I was told by my rheumatologist back in the 90s that I must do some exercise every day. I decided during my recovery that not doing enough exercise would be a thing of the past.

So, now that I'm fit and well ( still get very tired easily and am having a few, albeit much more minor nerve-related symptoms) I've joined the gym and I'm challenging myself, to make up for those years of 'time lost to pain'. Now that my neck pain has eased I find that I cope better with my other pain. My challenge will be to run the Robin Hood 10k on Saturday to fundraise for NASS. I'm no runner so this is a big deal for me. But I'm going to do it.

If you want to sponsor me and support NASS you can text NASS76 plus any amount (e.g. NASS76 £2) to 70070 or visit my JustGiving page. THANK YOU!

And as for the exercise I've been doing, mainly walking, I'm sure it's helping with my pain. Even when I'm in pain I force myself to do a bit and it helps.

Take care all, Debbie

NASS in Northern Ireland

When I joined NASS back in the Summer of 2011 it quickly became apparent to me that our physiotherapy branch network was something to be proud of; but it needed further support and development. We immediately set about doing this with our Branch Development conferences in 2012, and since then the network has gone from strength to strength.

What was missing from our branch network however was branches in Northern Ireland (NI). In fact, what was missing from NASS generally was specific work in NI.

We set about putting that right, but it took us a while to secure the funding. Then it took much longer than we'd expected to build some momentum to get things done there.

But, the waiting is now over. It's taken time but last week we finally delivered some great events in NI. On Friday we organised an AStretch physiotherapy course and saw 55 physiotherapists complete a one-day training course learning all about axial Spondyloarthritis and ankylosing spondylitis. That's 55 physios out there looking to identify inflammatory back pain early, a must,given the current 8.5 year delay in diagnosis. On Friday evening we hosted an event where people interested in setting up physio branches in NI could attend to put the foundations in place to do so. This was quickly followed with a Patient Conference on the Saturday which saw over 120 people attend and resulted in further enthusiasm for a NI branch network.

All in all it was a fantastic couple of days. Thankfully for me it meant that I finally got to deliver on the commitment I made to people with AS in NI; to deliver a conference there and undertake some development work and have a NASS presence in NI.

Thanks to Jill and Laura especially, but all of team NASS for putting so much effort into making the events so successful. Thanks to all the physios, people with AS, their friends and families that came along, and thanks to our wonderful speakers. There's still more to be done in NI but we've made a great start.

Take care all

World Arthritis Day, why do NASS get involved?

12 October

It's quite likely that, if you engage on social media that you'll notice that there are many days dedicated to a particular cause. World Sight Day, World Aids Day, there are many. Today, 12 October is officially World Arthritis Day.

So why does NASS get involved? Well, ankylosing spondylitis and axial spondyloarthritis (AS) are forms of inflammatory arthritis. But it's so much more than that. Today is a day where we get to make an extra contribution to raising awareness about AS.

Raising awareness has been a priority for NASS for the 4.5 years that I've been with NASS and it continues to be. Why? Because we should live in a world where AS is as recognisable as MS. We should live in a world where people understand that AS is more than back ache! NASS wants a world where people understand it's about pain, fatigue, stiffness, good days and bad days, high and lows, exercise and stretching to keep as well as possible. People need to understand that it's a disease that affects everyone differently. And of course we need to raise awareness to get the delay in diagnosis down from 8.5 years. (And as you know, NASS is also doing a lot of work with GPs too in this regard).

So, please do use #WorldArthritisDay as your chance to do your bit to raise awareness. Share our articles on Facebook with your friends and family too. If they take time to read, they'll be better informed and more understanding of an invisible illness.

World Arthritis Day is also a great day for us to give something back to you all in recognition of your support, your NASS membership, your fab NASS fundraising. So today we are launching our Care Coordinating Tool - My Plan for Life - for you to download and use, helping improve the services you receive. We've worked on this plan with other musculoskeletal charities. We're also launching a brand new video advising on our Top Tips for living well with AS. Again, why not share this on Facebook and Twitter to give your loved ones a better understanding of what you need to do daily just to manage your condition.

Take care all and Happy World Arthritis Day :.)

Invisible Illness 

6 October 2015

Last week we were talking about invisible illness on social media and our post on Facebook went down really well because so many of you understand the problem of people assuming you're OK because, well, you can't 'see' pain.

Recently I was talking to a friend who was expressing her disappointment that people don't have manners like they used to. My friend had seen an elderly lady board a bus with a much younger woman, and due to lack of seats the elderly lady had stood up giving the younger woman a seat. My friend was shocked at this. I advised that perhaps the younger woman had an invisible illness, something like AS or rheumatoid arthritis that could not be seen. My friend reflected, this wasn't something she had considered.

And it is so easily done. How many of us have seen someone using the disabled parking bays and silently passed judgement that 'they don't look like they have a disability'?

There's still so much to do to raise awareness about invisible illness like AS, and of course NASS will do all it can to build a public understanding of a what it's like to live with a condition like AS and the impact it has on your everyday lives.

Raising awareness remains a key priority for NASS and is embedded within our 5-year strategy. If you ever want to do your own bit locally to raise awareness you can contact us for a press release and we'll help you to tell your story.

Take care all, Debbie x

Good news and a busy week....

15 September 2015

I want to get back to letting you know what I'm up to in this blog but first I can't miss the opportunity to tell you how thrilled I am about the recent NICE announcement. NASS campaigned really hard to achieve this outcome for patients and we are over the moon with the improved options this new guidance offers patients. I'd go as far to say that this NICE news is the best thing I've been a part of achieving in the 4.5 years at NASS and I've been thrilled to see the response of our supporters on our Facebook page.

So, what I am up to this week on your behalf? Well, this week is a busy one. I will leave home on Wednesday morning and I won't get back until Saturday night.

Wednesday and Thursday this week will see me attending an annual spondyloarthritis event in Birmingham. I've been lucky enough to be asked to speak at the event every year since I was appointed and on Wednesday it will be a privilege to address a room full of rheumatologists, physiotherapists, nurses, researchers, all with a special interest in apondyloarthritis. It's a great opportunity for me to talk about the new initiatives that NASS is leading and ensure that our information is reaching their patients.

On Thursday night I'll be attending a National Voices even in London to discuss the healthcare system, learn about good practice and network with other organisations.

I get to spend some time in the NASS office on Friday morning, meeting the team to talk about next year's exciting plans and then opening a Trustee induction event for our four new trustees. I'll be heading off to Bath in the afternoon to talk AS with MP for Bath, Ben Howlett.

Saturday morning is a full NASS Council of Management meeting in Bath where I'll be talking to our trustees about our strategic plan, GP education and our 40th birthday celebrations next year amongst many other things.

Phew, I'm exhausted just talking about it. But, it's really important that you know what I'm up to - it's your charity after all.

Take care all. Best wishes, Debbie

Another first for NASS - You said, we listened and we did....

1 September 2015

I'm writing this on my way to Edinburgh. It's 1 September and marks the start of a really busy month for NASS. Today we are holding our first ever Scottish Patient Conference. This conference is an event that our Scottish members have been asking for, for a while and something I promised we would deliver if we could secure the funding. We have, and it's today. We've got some great speakers lined up and a packed event. I'm really looking forward to meeting so many there.

We're also holding an event in the Scottish Parliament tonight. Diagnosis times are still too long, hydrotherapy in Scotland is under threat and Scottish Members of Parliament need to know what it's like to live with ankylosing spondylitis (axial Spondyloarthritis (AS). MEPs need to know the landscape for patients AS_it_is.

At the weekend we've got our Jurassic Trek event on the Dorset coast. Thanks to everyone taking part, including two NASS Trustees Grant and Ben, all raising much-needed funds so that we can continue our work.

Next week I'll be in Manchester for a 2-day NICE Guideline Development Group; you'll recall we campaigned for Clinical Guidelines in 2013; we are hoping that these Guidelines once produced by NICE will lead to earlier diagnosis and improved care for people with AS.

I'll fill you in on our other September activities another time. Bye for now.

Take care all, Debbie

It's time that we valued hydrotherapy more - #splash4hydro

24 August 2015

Many of you will have experienced the benefits of hydrotherapy both in terms of managing your condition or indeed as intense therapy during a flare up. At NASS we hear all the time how much hydro helps you and indeed people with many other conditions and disabilities.  So why does it feel like hydrotherapy is so vulnerable within our healthcare system?

When I joined NASS, the Grimsby branch had just lost their hydro pool. Since then we've lobbied hard aiming to prevent further closures, with mixed results. Currently, we are extremely concerned about plans to close hydrotherapy pools in Lothian, Scotland.

This just doesn't make any sense to me! Research into the benefits of hydrotherapy show that it is more effective than land based exercise and I know from what you've told me that hyrdotherapy works for you. There's no doubt in my mind that those who access regular hydro and physiotherapy will not be presenting so frequently in both primary and secondary care clinics for further costly intervention. Such therapy is very likely to be saving money in the long term, be keeping people active, likely remaining in work. Every week, hundreds of people access such therapy at our NASS branches, taking responsibility, self managing their condition, making much use of this vital provision.

I worked in local government for 22 years before I became CEO at NASS.  During that time I saw some great services closed or ceased only for them to be reinstated several years later because the decision had proven short sighted. Let's not make the same mistake with hydrotherapy pools. Whilst they may be costly to run, inevitably they are likely saving money on the health budget and keeping people active and contributing to the economy.

Join our Twitter campaign #splash4hydro and keep the benefits of hydrotherapy in the spotlight - thank you.

Take care all


You said, NASS listened and we did....

I've just returned from a lovely family holiday and being away gave me plenty of relaxing time to reflect.

So, I reflected on NASS and the 4 years that I've been with the charity. You'll recall that I promised a few things when I joined:

  • To listen to our members and make their needs a priority
  • To ensure that NASS has a presence across the whole of the UK
  • To dedicate more resources to Research

Our patient survey conducted with over 1600 members gave us evidence on which to lobby healthcare professionals as to what is important to you. It also gave us key data on which to lobby MPs and NHS England and resulted in the successful 'AS it is' campaign leading to Clinical Guidelines being developed in spondyloarthritis.

One of the things you all said in my early days at the charity was that you wanted to see NASS out and about and not a 'London-centric' organisation. Since then we've held major conferences in Portsmouth, Birmingham, London and York. We've held 'AS & You' events in Chester, Portsmouth, Sunderland, Birmingham and London, and we have events planned later this year in Leeds, Plymouth and Cardiff. We've held successful Parliamentary events in Wales, Scotland and Westminster, with more to come and at last, in October, after a struggle to get it off the ground, our work in Northern Ireland kicks-off with a Patient Conference (which we've had to move to a bigger venue due to demand), an AStretch physiotherapy conference and a meeting to set up NASS branches in Northern Ireland.

We ran Branch Development Conferences in 2012 across the regions and I'm happy to say that we now have 10 more branches established than when I joined, with more in the pipeline.

The first ever NASS Research Strategy was developed with patients and HCPs, working in partnership with the University of Lancaster in 2013, giving us a platform to talk to the rheumatology community about what's important to you and resulting in a NASS research fund of £150k being established in January and research into key topics, important to you, such as flares, fatigue and diet being funded.

I could go on and on about the huge increase in the services we provide. All this has been done by our fantastic NASS Team and we only have 1.5 more staff now than we did back then, despite the massive increase in what we do.

Having said all that, there's still so much more to do; despite all our GP education work, the delay in diagnosis remains at about 8 years for example. But what I wanted to capture here is that NASS is listening. You said you wanted us to do all these things and we listened. Where finance and resources have allowed, I hope you'll agree that we've delivered on your wishes, even if there's still so much more to achieve.

NASS continues to listen and you don't need to wait for our next survey to give us your views.

Take care all, Debbie

Celebrating our biologics and rheumatology nurse specialists

15 July 2015

On Monday I spent the day in London, fitting in some time at the NASS office with the Team and a meeting with the Association of British Pharmaceutical Industry (ABPI) Rheumatology Initiatives group to talk AS.

The train journey home for me after a long day in London is usually quite a drain but not this week. Instead of burying myself in work or a good book I got chatting to 3 lovely sisters from Durham. After discovering what I did, we got talking about one of the sisters who has rheumatoid arthritis. We talked about the biologic therapy she was on. What was fantastic was this - this lady knew all about her medication, it being clear that she had been given a wealth of information about all of the biologics/anti TNF available to her before starting treatment. She also took part in the surveys undertaken by the British Society for Rheumatology RA Biologics register and knew the importance of doing so; to help research, monitor the effects of the drugs, build a data set, helping current and future generations.

And so I felt that this lady represented just how much we should celebrate the biologics nurses and rheumatology nurse specialists who are taking time to talk to patients about choices they have and how their experiences can help with future research. It was evident that this lady had a wonderful relationship with her nurse and perhaps we don't celebrate this enough. She was telling me all about her wonderful weekend and from this I was heartened that, hopefully with such great support she was managing to live well, despite her RA.

NASS campaigned for an AS Biologics Register before my time. I sit on the BSR AS Biologics Registers Committee and know the importance of the work being done at Aberdeen to collect patient data - it's informing our future and future research and I hope that many of you have been encouraged to get involved.

In the last couple of weeks I've had the opportunity to speak to many rheumatology nurse specialists at educational events in both Birmingham and Manchester. These nurses were taking time (often in their own time) to learn more about Spondyloarthritis and the latest research. Such dedication often goes unnoticed.

So this blog is for the biologics and rheumatology nurse specialists out there. Thank you to all of them, education patients and helping them to live as well as they can do.

Take care all, Debbie x

Supporting charities. And are you newly diagnosed?

9 July 2015

I'm a member of Coeliac UK. I pay £24 a year and I think this represents very good value for money. Recently I spotted someone complaining on social media that they had called this charity to join and couldn't believe it wasn't free. This person was upset because gluten free food is already expensive and 'we don't chose to have a condition meaning we can't eat gluten'. Now, I empathise about the food, it is very expensive, and no, as coeliacs we don't 'chose' to cut out gluten, but how did this person think that Coeliac UK could provide us with all the support that it does without the financial support from its members and fundraisers?

This is a really important point, particularly for small charities like NASS. We get about a third of our income every year from our loyal members. We simply could not function as a charity without this support. And of course we like to think we give our members a lot back in return; a lot more than two magazines a year, a free conference and access to our members only forum. We give our members the chance to be part of NASS, a wide, supportive community. Our Helpline and all our literature is free to access for anyone in the AS community. This,I believe ensures we reach as many people in need as possible. Hopefully they'll want to join NASS when they've benefitted from the support we give. And our membership is very reasonable. But our membership needs to grow.

The charitable community clearly needs to do more to show the benefits of supporting charities and why it's so important. NASS receives no government support. We have to work hard to bring in every penny.

So back to the person who felt aggrieved at having to pay for the services of Coeliac UK. Hopefully they will decide to join and experience the fantastic service they offer; it was invaluable to me when I was first diagnosed with coeliac disease and I still call with the odd question every now and then. If you're newly diagnosed with ankylosing spondylitis (Axial Spondyloarthritis) (AS) you can have a look at our helpful literature here.

Thanks to everyone who supports NASS, your contribution, great or small is very much appreciated and allows us to continue to develop our services. Many charities cannot function without such support; and it's not always about what you can get out of the charity for yourself, it's about supporting that charity, enabling it to support people with a similar condition, with similar challenges to yourself . We are here for everybody, and we are funding research for future generations....

Take care all, and a huge thanks to all our loyal supporters. Debbie x

Living with someone with AS - a thought for friends and family

23 June 2015

On Saturday it was a pleasure to be part of yet another NASS Members' Day. We held it in York this year and it was great to see and meet many new faces.

Usually at Members' Day the AGM clashes with our Friends and Family event but this year we re-arranged the schedule meaning that I was able to take part in the Friends and Family session. I introduced these sessions when I joined NASS back in 2011 as I truly believe that we have a role to support those with AS but also their friends and families.

We all know the issues; AS is invisible in many people, pain is invisible, fatigue is invisible, with AS you can have good and bad days, good and bad periods, or flares. This is incredibly hard for the person suffering but I also believe very hard for the person living with and trying to support them. AS effects everyone differently too.

It was heartening to hear friends and families sharing their concerns and coping mechanisms on Saturday. It was also confirmation for me that we need to do more work in this area. If we can support carers and loved ones better then ultimately everybody benefits.

We plan to run more friends and family events and our forthcoming Scottish patient conference provides another opportunity for friends and family to come along and learn more about the condition.

Educating those around you about your AS and the impact it has on your life is so important.

Take care all Debbie

I'm back!

15 June 2015

Hi folks, it's been a while. I'm back at work this week following on from my neck surgery in late March.

I have to be honest, it was a much bigger operation than I anticipated and the recovery has tested me both physically and mentally. I've been advised that it may be a little early to return to work and so I have to take it easy for the next few weeks. Can I thank everyone who sent me cards, tweets and get well messages after my surgery, it really helped and I appreciated it very much.

Can I also add my thanks to all of you who have been busy fundraising for NASS whilst I've been off. There's been such a lot of activity, all inspirational, and it means so much to a small charity like NASS.

In January NASS launched it's very first Research Fund and it was fabulous to see us support much needed research projects a month ago based on what you said was important to you. That's just scratching the surface on the good work the team has done whilst I've been off - thank you Team.

So, why was it so important that I got back to work this week in particular? Well, I'll be at NICE in London for two days at the beginning of the week for the Spondyloarthritis Guideline Development Group meeting. I've blogged about the importance of such guidelines for both helping reduce delays in diagnosis and also promoting good quality, consistent care before. NICE aim to issue the guidelines sometime in 2016.

At the end of this week it's our annual conference, our Members' Day in York. The team has lined up some fabulous speakers and it's a great opportunity to get together and chat with others who also have AS. For me, it's a wonderful day to meet up and listen to our members and their families.

So, I look forward to seeing some of you at the weekend. I'll catch up with many of you on Twitter (@NASSchiefexec).

Take care all, Debbie

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 NA

Chief Executive

Debbie Cook