Cuts to benefits for disabled people - the real impact (15 January 2016)
One of my closest friends is
disabled. He's in his 40s, has an artificial leg, can walk only with the aid of
crutches and has other, numerous health problems. That said, I've known him for
over 20 years and he's always worked full-time. He's a wonderful dad to his
toddler, and both he and his wife work.
This week he was informed that he was no longer entitled to the higher rate of Disability Living Allowance (DLA), meaning that he cannot keep his Motability car. Not only has this letter sent him and his wife into complete panic, it has also made him feel bad about himself; he feels like a fraud. This makes me personally very angry. In my whole life I have never met someone more determined despite his disability. Importantly for this blog, he is determined to work.
If he loses his car, he will no longer be able to get to work. If he loses his car, he will no longer be able to take his child to sports practice on a Saturday whilst his wife is at work. These are just a couple of examples. This will have a massive impact on their lives.
His GP is outraged that this is happening. Anyone who knows him would be outraged. The impact of this decision, this withdrawal of this right to a Motability car has rocked his emotions. His car will be taken away in about 4 weeks if he cannot change this decision, putting him out of a job.
Every day is challenging for my friend. From working full-time, my friend will likely end up claiming unemployment benefit unless his decision is overturned. We know many people with AS face the same challenges. At NASS we often receive calls on our Helpline from people diagnosed with AS who are concerned about their claim for benefits. In some cases, despite the monumental impact AS has on their lives, they have not been awarded the mobility component of their Personal Independence Payment (PIP) claim. This has resulted in some members losing their entitlement to their Blue Badge, which has a major impact on their lives.
Why do we have a political system that takes away a legitimate benefit without the slightest concern for the long-term impact on the lives of those in genuine need, as well as the impact on the economy. How can cases like my friend's, and dozens more on our Helpline, be dealt with in this way?
On Wednesday, NASS joined over 140 campaigners at a mass lobby in Westminster Hall to campaign about the latest cuts proposed in the Welfare Reform Bill; cuts to benefits that many disabled people and their families rely on. Your voice matters. Please do tell your MP to stop the cuts to benefits that disabled people need. You can also voice your views on Twitter with #BenefitsLobby.
If you are concerned about your benefit claim, then there is some good news. A recent survey by Disability Rights UK found that over 47% of all PIP appeals and 52% of ESA had been successfully overturned. For any information on queries regarding claiming for benefits, please contact Matthew as he has written support letters for many NASS members to help with appeals. You can reach Matthew by phone on 020 8741 1515.
Take care all,
Your voice - so important (12 January 2016)
My first blog of 2016! A very Happy New Year to you all, and wishing you a year of improved health, fun and happiness.
You may remember during 2015 NASS surveyed people with AS living in the UK about anti TNF therapy. The data we collected helped us make a good, credible written and verbal submission to the National Institute for Health and Care Excellence (NICE) for the Multiple Technology Appraisal of anti TNF therapy in AS. We were able to explain why access to these therapies, including the option to switch, was important to people with AS. NICE subsequently praised NASS for the quality of our evidence and we are now just waiting for the official guidance to be published (hopefully next month). We believe it will provide for what we've been asking for - a huge success and much welcomed for people with axial spondyloarthritis and ankylosing spondylitis.
This shows the power of your voice. Working together we are a strong community with powerful messages; with your help NASS can represent the whole spectrum of axial spondyloarthritis.
And it's now time for us to seek your views again. NICE is now undertaking what is called a Single Technology Appraisal for secukinumab. This is not a TNF therapy but a human monoclonal antibody that selectively neutralises circulating IL 17A. Research shows that IL 17A plays an important role in driving the body's immune response in psoriasis and spondyloarthritis conditions, including psoriatic arthritis and AS. If you live in the UK and have a diagnosis of AS we'd really like to hear from you again. I cannot emphasise enough how your voice can make a real difference.
In a few weeks we'll also be sending out our 3-yearly survey all about your care, therapies, medications, work (and more) to help us campaign for improvements across the UK. It was your voice, collected in our 2013 patient survey that helped us campaign successfully for the production of NICE Clinical Guidelines for spondyloarthritis, due out at the end of this year (hopefully!). (I'm attending another 2 day meeting of the guideline development group in Manchester this week and there's so much to discuss!). The views we collect from you in these surveys is invaluable in driving change and improvement in the quality and delivery of your care.
So if you've ever wondered whether completing our NASS surveys is worth it, let me tell you it is. NASS is a listening organisation, we pride ourselves on being in touch with our supporters. We want to know what your issues are anyway, but we'll also use your voice, your views, to campaign for change and improvement. Your voice will count.
Thanks all. Best wishes, as always Debbie
New Year, a time for reflection (28 December 2015)
This time of year we usually tend to reflect on months gone by and what we're planning to do for the forthcoming year.
It's been another busy year for NASS, typified by a wonderful conference in York during the Summer, many great AS and You events for those newly diagnosed and of course the fabulous news from NICE that it is recommending better access to anti-TNF therapy following our extensive survey work and representations made.
Next year is looking bright, shiny and orange for NASS. Our 40th birthday. Wow........ 40 years of supporting people with AS, that's really something to celebrate and be proud of.
The team has a wonderful Members' Day planned in Bath (where NASS was born) on 4 June and a fabulous gala dinner in London on 15 October. We're also looking forward to launching our Fab at 40 Fortnight, giving you the opportunity to get involved in 70s-inspired events this May. All to raise money for a cause close to your heart.
For me personally 2015 was overshadowed by the major neck surgery I had at the end of March. I was pretty low afterwards struggling with the recovery challenges, keen to get back to ‘me' as quickly as possible, but I was overwhelmed by the messages of kindness and support I received. It's often the way isn't it that out of something painful can come something truly wonderful. I also found the whole recovery journey quite inspiring - I wanted to challenge myself to do something I'd never done before after my recovery, which is why I ran a 10k for NASS in November. I've often wondered what drives ours supporters to take on their pain and take on a challenge and now I know why - it was thoroughly enjoyable and so rewarding; to give something back to such a good cause.
Whatever challenges 2016 brings for you, I hope there will be something bright at the end. We'll be celebrating all that's great about 40 years of NASS as well as delivering a revised Back to Action App, a whole new section of NASS aimed at younger people and much, much more. Do join us, join in whenever you can.
Wishing you a happy, healthy new year. Take care all. Best wishes, Debbie
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 2015)
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 (20 October 2015)
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 2015)
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.
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
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 2015)
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 2015)
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