19 November 2013
I'm not a vet and I'm not a dancer but .....
It's about 10 days now since I stood in the Churchill Room at the Houses of Parliament alongside Huw Irranca-Davies MP and Professor Peter Kay, the National Clinical Director for Musculoskeletal Conditions to launch our AS it is campaign. It took me about 5 out of those 10 days to come down from the feeling of elation.
Here's why....... I grew up in a council house in South Derbyshire. I thought then, that I either wanted to be a dancer or work with animals. I never ever thought that I would be privileged to speak in such a setting but in the 2 ½ years that I've been NASS Director I've spoken 3 times in Parliament.
I was also elated because the event had gone well, but more importantly, that we had done the right thing on many levels. We brought the unacceptably long delay in diagnosing AS and the inconsistency of care for those with a diagnosis to the attention of influential MPs, Lords and other important decision-makers. They have all taken away that message and that can only be a good thing.
The launch of our campaign means that everyone passionate about a better deal for the AS community can get involved by writing to their MP and more.
Perhaps the greatest elation came from meeting our members and supporters.
How fab is it when your job involves meeting 6-year old Sebastian who cycled 100 miles over the summer to support NASS, recognising his mum's daily struggle with the condition?
How fab is it when your job involves chatting to people who have been helped by NASS and then in return go on to support NASS in so many inspirational ways?
How fab is it when your job involves bringing together healthcare professionals who work tirelessly behind the scenes to improve the patient journey? What we see as patients in a clinic setting is only a small part of what they do. I meet rheumatologists, physiotherapists and more who go way beyond the boundaries of their role to help people with AS. They are a crowd I feel privileged to work alongside.
The other great thing about the campaign launch and parliamentary event was that it gave the NASS team the chance to meet and chat to our fabulous supporters. It is so important to me that the vital role they all play in delivering the NASS services is recognised. As a small team (just 5 full time roles) we have a large reach and it's because they all go over and above.
So, the campaign is launched. MPs are talking about. Letters will be landing on the desks of decision makers and we are hopeful action from NICE to bring about standards of care for people with AS will be starting early in the New Year - yeah!
Thanks to you all, for supporting NASS and for supporting the campaign. Thanks to NASS for allowing little old me to stand in the Houses of Parliament and speak about a subject about which I am hugely passionate.
Take care all, Debbie
7 November 2013
This year NASS has undertaken a large patient survey and a large research survey. So what has this work told us?
Well, the average delay in diagnosis is still on average 8.5 years, and we know that in many cases the delay is much longer.
We know that your AS is having a big impact on your work.
We know that 60 per cent of those who completed the survey and have AS had not had any physiotherapy in the last 12 months.
We know that you want more support during a flare.
Basically, things still need to improve significantly for you all.
The National Institute for Health and Clinical Excellence (NICE) has committed to starting a process to introduce a Clinical Guideline for Spondyloarthritis in 2014. We are concerned that the NICE timetable can sometimes slip. We are therefore calling for NICE to start the process now and for NHS England to commit to an education programme for GPs on Inflammatory Back Pain (we've done so much work on this and continue to do so but we need more to be done).
So, it's our Parliamentary event tonight. Can you believe that it has been a whole year since Flying the Flag? It's an occasion to thank more of our amazing supporters, to celebrate the wonderful organisation that is NASS, to launch our campaign. We have 23 MPs promising to come and hopefully more will come if they are available. All the MPs will be asked to sign up to our Call for Action.
- AS it is...there is an average, unacceptable 8.5 year delay in diagnosing AS
- AS it is...more work needs to be done in primary care so that inflammatory back pain is picked up
- AS it is...the general population do not understand that AS affects young people for life
- AS it is...the general population still does not understand that AS means pain, fatigue, stiffness, depression and much, much more
- AS it is...the care of people with AS is variable
- AS it is...people with AS are not getting enough access to physiotherapy
- AS it is...many people tell us their AS is having a big impact on their work lives and careers
- AS it is...people with AS want more support during a flare up of their condition
Please help us spread the word. Use these letters to write to your MP and the the Right Honorable Earl Howe. Put details about ‘AS it is' on your Facebook page. Tweet about #AS_it _is. Tell your story in your local newspaper. Thank you.
Take care all, Debbie
Getting a diagnosis - for me, a positive thing...
18 October 2013
I've had a difficult, worrying few months health-wise. During the summer I've had many tests and investigations and on Monday I saw a lovely gastroenterologist who advised me that I have Coeliac disease. I now have to follow a strict gluten free diet and hopefully soon I will start to feel much better.
For me, this was great news. I'd started to fear what might be wrong and, although I will have to make some lifestyle changes and learn more about what I can and can't eat, it could in my opinion have been a lot worse. And because I now have this diagnosis I feel confident about the support I will receive and the regular checks on things like bone health I will get. One of the first things my gastroenterologist advised was to join Coeliac UK, which I did yesterday. I'm waiting for my pack to come now but in the meantime I have a temporary log in to their website and access to a wealth of information. I feel very positive.
Getting a diagnosis of ankylosing spondylitis is still taking on average between 8 and 11 years in the UK. This clearly needs to change. Inflammatory back pain (IBP) needs to be recognised earlier and you can see what NASS is doing about this. This is one of the issues we talked to Norman Lamb, Minister for Health about last week.
I was very lucky, my spondyloarthritis was diagnosed quickly when aged 26, during an iritis flare my opthalmologist asked if I suffered with lower back pain,which I did and had done for some time. He referred me straight to rheumatology ( and my story is then a good one). But it shouldn't be CHANCE, chance that you see a GP who thinks IBP and really listens, chance that your gastroenterologist/ opthalmologist / dermatologist/ physiotherapist picks up on your story and makes a link. I talk to many whose journey to diagnosis was a long,difficult one.
The earlier the diagnosis the better the likely outcome.
As individuals we will all respond and react differently to getting a diagnosis of AS; and our journey to get there will likely Impact on how we feel. But on getting a diagnosis you are on the journey to better treatment and management. And of course NASS is here to support you.
I turned to NASS all those years ago. I turned to Coeliac UK on Monday. Turning to a reliable source of information and support is so important.
Take care all, Debbie
Young people get arthritis too - a message for World Arthritis Day
11 October 2013
So, here we are again, World Arthritis Day tomorrow, 12th October. How quickly it has come around! It's already 2 years since NASS launched it's Back To Action free exercise App. Time flies when you're having fun.
We've already got a section on the website talking all about the things we've been doing recently and have planned to raise awareness of AS. All at NASS work hard all year to put Ankylosing spondylitis on everyone's agenda.
When I'm out and about ( I spend about half my life on a train!) I always wear my NASS pin-badge. This often results in people asking me about NASS and me telling them about AS and what I do. I find that when I talk about supporting a group of people whose arthritis started when they were young I find it usually gets their attention. Many people still think arthritis goes hand in hand with ageing. So, advising that AS usually starts between the ages of 16 and 25 and before the age of 40 in most cases is the fact I start with.
I'm also wearing my bent fork badge at the moment to raise awareness of the Simple Tasks campaign. Although the bent fork is likely to be associated with rheumatoid arthritis, by wearing the fork it provokes a conversation. I can then advise of some of the basic things, like putting on socks, that a person with AS might struggle with.
Raising awareness can be that easy and we can all do it. World Arthritis Day gives us an extra excuse to do so :.) Why not start the conversation?
Whatever you do folks, have a great weekend. Take care all, Debbie
My quest for a wider understanding of AS
4 October 2013
Anyone that's heard me speak or read the odd one of my blogs or AS news articles will know my passion to see AS more widely understood. I often talk about how most people know a little about MS (multiple sclerosis); just as hard to say and the abbreviated version of MS commonly used. That's where I want to get to, when you say you have AS that your brother, sister, friend, boss, colleague all know what you mean and how your AS impacts on your life.
I promised to raise awareness, raise the profile of AS when I started with NASS in 2011 and I do think we've come a long way; but not nearly far enough.
I thought I'd just say a little more about what we've done lately and are planning to do soon.
Just today NASS has been a signatory to a letter in The Times talking about rheumatic conditions and a partner in the BSR's (British Society for Rheumatology) Simple Tasks campaign which will highlight generally some of the tasks which people with AS, RA and other rheumatic conditions struggle with. I'll blog separately about Simple Tasks another day in more detail.
Last night we were talking AS in the Scottish Parliament at the Cross-Party Group on Musculoskeletal Conditions.
We're working towards further publicity around World Arthritis Day on 12th October. Sophie from NASS is speaking with MPs and a representative of NICE (National Institute for Health and Clinical Excellence) in Leeds tomorrow whilst I am attending another event Friday and Saturday, again talking awareness raising.
NASS is fortunate enough to have gained sponsorship for another Westminster Parliamentary event in November to keep pressing for better standards of care further to our Flying the Flag event held last November. I and others will be meeting Norman Lamb, Minister for Health in England next week and we are also working towards a Scottish Parliamentary event in December.
In the recent Patient Survey you told us all about what AS has meant for you and sadly if diagnosis has been delayed, which we all know is not uncommon, your stories have told of divorce, being unable to work, being depressed; and we work hard to get people to understand this potential impact when proper treatment and help with management is not there.
That's the stuff that springs to mind now whilst on the train from Edinburgh writing this. For a team of 5 at NASS we continue to do as much as we can to raise awareness whilst also delivering all the other services that NASS provides. There's loads more to do and we'll keep going......
Take care all, Debbie
NASS and The Apprentice
Thought I'd use this week's blog to update you all properly on the changes in the NASS team that have taken place over recent months. #TeamNASS to you Twitter folks.
At the end of last year I came to the conclusion that we needed to have an experienced fundraiser on board. We have a fab supporter base but in the current climate our fundraising is more important than ever, as are our applications to Charitable Trusts. We said goodbye to Ingrid last November and Catriona Finlayson joined NASS (on a part-time basis) in March this year.
We then had a wonderful news. A #NASSbaby (to our Twitter fans). I'm hoping to bring you pitter patter news very soon but needless to say, Maddy Randall is now on maternity leave, and I hope she's putting her feet up. Jill Hamilton, known to many of you has taken on Maddy's work with our branches meaning that we needed someone to cover some of Jill's admin work. Enter our newest (youngest) recruit Jessica Fogden, our very own NASS Apprentice. She's hired :.)
So, actually the NASS Team is still the same size as it was when I joined in June 2011, but because not everyone works full time then it might feel as though there are many new faces. We are still a very small team too compared to other such organisations but the great news is that our profile continues to grow.
Sally is still on the NASS Helpline (what would we do without her!) and Sophie is part-time on a temporary contract working on campaigns. You can read more about Team NASS here.
Listen out for Jess on the phones, I'm sure you'll join me in welcoming her to the NASS family. I've said it before and I'll say it again; I'm lucky to have them all.
Take care all, Debbie
My older blog pieces (from October 2012) have now moved to the Members' area of the website if anyone would like to read them.