GUEST BLOG - Claire Gibbs
I am delighted to have been asked to write a blog for NASS. I've only written one blog before. This is my first for a charity and what a wonderful charity it is. I am writing this time with a slightly different outlook...I am a researcher in my professional life, but also a patient in my personal life. I am the Senior Clinical Research Nurse at The James Paget University Hospitals NHS Foundation Trust and have recently been diagnosed with AS and benign hypermobility syndrome.
In December 2014, Abby Greaves (Research Administrator) and I decided to start a campaign via social media, specifically using twitter. We wanted to introduce our core research and development team staff to the local area and to make visible the research opportunities available to patients, the public and staff.
We decided to take photos of our staff with the reason they are involved in research using the hashtag #WhyWeDoResearch. We planned to upload one photo a day for the 12 days of Christmas. Little did we know then what #WhyWeDoResearch would become. Within the first week a number of other NHS Trusts had got involved. NASS joined by the start of week two.
We extended the campaign to the New Year. By then 12 hospitals and charities were involved. By 1 January 2015 the campaign had reached Australia and Spain so we decided to keep it open indefinitely - why not give everybody a voice? Why stop something had clearly captured people's attention? The enthusiasm of people getting involved was incredible.
So where are we now, 7 months down the line? Our vision remains the same...... giving researchers, patients and staff the opportunity to say why they do what they do and raising awareness of opportunities. These are some of our milestones.
Video 1 released: (created by myself & @keeling_michael)
Video 2 released: From local to global (created as above)
Article in Nursing Times
NIHR Celebrating Research Nurses 2015, ECMC Conference (video)
Australian article released
Shortlisted for a Nursing Times Award
Launch of www.whywedoresearch.weebly.com website (designed by myself - content supported by collaborators & members of the public)
"Impacts survey" launched to capture the impacts the campaign has had on people / organisations
The campaign has been run completely voluntarily, outside of work hours by all involved so I would like to thank everybody for the incredible support. It is a simple way to say why research is important; it links patients, public and researchers in a way very different to anything that has happened before. It is not corporate or political; it is run by people who are at the forefront of healthcare, including patients and the public, and those people are passionate, caring and want the best for their families.
I am a patient; recently diagnosed with benign hypermobility syndrome and AS. The NASS team have supported me since I was initially diagnosed with AS around a year ago and knowing there were people out there that knew what this was meant the world to me, especially after over 10 years of flare ups and pain...and people suggesting nothing was wrong.
I have an amazing physio who has been helping and supporting me months, never judging, always giving advice when I need it, stopping me being stubborn at the gym and over-working my body and also, and perhaps the thing which has had the biggest impact; telling me that it's okay to feel a bit frustrated sometimes. Thank you Kate!
#WhyWeDoResearch is about giving people a voice to say why they do what they do and to raise awareness of the opportunities that are out there for all of us: patients, public, researchers alike. Please join in and share your picture via twitter using the hashtag.
Wouldn't it be great if there was research available for every illness and every syndrome to try and find some of these answers! Hopefully at some point there will be. Helping people to live normal, healthy lives...that's #WhyWeDoResearch.
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
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 ....
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.....
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....
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.
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.