AS in the media - Adam Rickitt's story
11 March 2014
So, lots of opinion about Adam Rickitt's article in the Daily Mirror at the weekend. Some are really happy that once again AS has featured in a national newspaper, helping raise awareness about the condition. Some feel upset that the article contained some inaccuracies about the condition.
Our Facebook page and Twitter accounts were buzzing with opinion.
So here's my view. I read the article and was disappointed that it contained inaccuracies about AS - mainly, I was worried that it would cause unnecessary anxiety amongst sufferers. But, I was also pleased to see that AS was being talked about in the media.
Adam has his own way of managing his AS. If one thing in life is certain, it's that we are all different, and so we handle things in our own way. And AS affects people in different ways - we have to accept that.
Sure, it would be better to see factual reporting about AS, but if you're reading this blog it means that you are connected to NASS and so you have access to the latest, factual, reliable information in the UK about your condition. That's what's important - that you know where to turn.
We cannot control the media. We are always grateful when celebrities talk about their AS - it helps sufferers to identify with them, raises awareness and also gives people support in reading the stories of others. Over the past couple of days we have been contacted by journalists from other publications who are keen to cover the subject so we know that Adam's story has raised interest in the press about the condition. Pick Me Up! magazine will be featuring an AS story from a NASS member in the 20 March issue.
We wish Adam all the best and look forward to perhaps working with him in the future.
Remember that whatever you read about AS, we are all different and remember to come to NASS for the facts and information and support.
Take care all. Debbie
NHS Change Day
3 March 2014
NASS has launched its NHS Change day campaign. I've blogged before about the NHS; sometimes based on my own experiences, sometimes based on the work that I see in my role at NASS. My own personal view is that our NHS should be celebrated, that it's a wonderful institution. Generally I think that there is only a small minority within the NHS that let it down (but that it's human nature to focus on our bad experiences). I also think that NHS managers and staff are under a huge amount of pressure from on high to meet targets and implement the latest 'change' programme (I'm a fan of change by the way but implemented properly and with ownership and collaboration).
NASS knows from our audit of rheumatology departments that care for people with ankylosing spondylitis across the UK is variable. We know that in some places it's excellent and in some places it needs improving and that's a goal we work towards.
When NASS surveyed our membership last year we found out what was important to 1630 people with a diagnosis of AS. And, one of the things that's apparent is that they want to be asked by their rheumatologist what's important to them, the patient in terms of managing their AS. It might be getting back to work. It might be attending their daughter's wedding. It might be feeling able to make it to a weekly Thai Chi class. It's an individual thing.
And so that's our NHS Change day campaign. To ask healthcare professionals to commit to asking their patients about their personal goals. Small things make such a big difference and to me that's what NHS Change Day is all about....
Take care all
'You're a whole person' - the NHS, the great and the not so great...
7 February 2014
About 3 weeks ago, I went to see my gastroenterologist for a coeliac checkup. I've been having problems with the discs in my neck for 4 years and I was struggling at the time with neck and arm pain. I wasn't intending to mention this - I was seeing a gastroenterologist, not a rheumatologist or a neurologist. Spotting my discomfort, the wonderful Dr Moss asked me what was wrong. I told him that I wasn't planning to mention it as it wasn't why I was there. 'You're a whole person' he said, duly examined me and referred me for an urgent MRI scan. Wow! He was interested in all of my health, not just his specialty.
Now I work as NASS Director with the most amazing clinicians, whom I am sure take this approach. But as a patient, based on some (not all) of my experience, this was fantastic - the NHS at its best.
I went for the MRI scan on a Sunday night owing to the hospital catching up on a 6 week waiting list for an urgent MRI. I was more than happy to go on a Sunday, desperate in fact.
My appointment was for 9.40pm. I was asked to change into a gown at 9.30pm. I was then left in a cold room on my own until 10.20pm. Nobody came to explain the delay, which I know can be avoidable. When the radiographer eventually came to me he said only my name and then nodded towards the MRI table for me to get on. I hate having an MRI at the best of times. And in those couple of hours at that hospital I saw a glint of what lets the NHS down. Based on an experience with just two people I came away disappointed.
I am a huge supporter of our NHS. It is filled with the most dedicated, caring individuals who go over and beyond. I see this every day in my work. Sadly there are always a few that let it down, and it's this that gets media attention. Let's focus on the good, I certainly wouldn't want to be without it.
Take care all, Debbie
Think small in 2014
My first blog of 2014. A Happy, healthy New Year to you all.
2013 ended on a sad note for me; I lost my Granny and a very special Auntie on 21st and 23rd December. Both women were an inspiration to me in different ways; strong women, the heart of their families.
NASS has been chosen as one of the two charities to receive donations in memory of my Granny; I was very touched by this gesture, really touched.
All charities do fantastic work. It's so great though when people remember and support smaller charities, especially at such a difficult time. Small charities, less well known rely on this support.
And it's so easy. Just recently I was talking to a group of my nearest and dearest about how they could support NASS through Give As You Live when doing their on-line Christmas shopping at no extra cost to them. Do your friends and families know about NASS and how they could support people with AS. Or indeed do your family know there are such easy ways they can support charities?
So, back to 2014. I wish you a great year. Thanks for continuing to support NASS, a small charity close to all our hearts.
And, speaking of matters of the heart - I'd like to dedicate this blog to Granny Mabel and Auntie Rita .....
Take care all, Debbie.
17 December 2013
A week or so ago I had the pleasure of speaking at the Arthritis and Musculoskeletal Alliance's MSK2013 conference about the patient experience.
I was honoured to be asked, to be given the opportunity of talking to commissioners, Healthcare professionals and other patient group representatives. I shared the patient journey slot with Jo from Arthritis Care.
I presented the highlights, key messages from our recent patient survey. It was great to have data representing the journey and opinions from 1630 people with a diagnosis of AS. I was able to highlight the often ‘invisible' nature of ankylosing spondylitis, the prevalence data (it's not a rare condition) and talk about the impact on patients' lives and the lives of those around them.
I'd talked about the same issues the night before to a room full of journalists. It's clear from the feedback on both days that this information is really making the listeners stop and think about AS and that they are learning more about the disease.
People also report that I speak with passion about the issues. I'm in the wrong job if I don't.
After the conference ARMA also managed to secure the 3 national Clinical Directors for MSK, Spinal disorders and Major Trauma who all gave a presentation. That was a large undertaking; to get 3 such high profile post-holders together in a room at the same time. It was fantastic to hear them too speak with passion for making improvements. Really heartening.
It's so important that both patients and patient groups get to hear about all this stuff: things that happen to improve the patient experience, but are not always visible to the patient. Working together, we are all aspiring for improvements.
MSK has no National Strategic Clinical Network to advise commissioners. That puts MSK behind the curve in terms of the new health landscape. It's not good enough and we need to push hard for a better deal for MSK. Believe me. We are.
But we're not waiting for an SCN to fall into our lap, nor would it prove a ready-made answer to the issues we're all grappling with. We - and who better than us? - have got to come up with those answers ourselves, by working together, and that's why we're getting on with the job of building MSK clinical networks in England from the ground up.
Peter Kay, the National Clinical Director for Musculoskeletal Disorders puts it very well when he says: "MSK healthcare is not usually about saving lives but good MSK healthcare makes life worth living".
Take care all,
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
My older blog pieces (from January 2013) have now moved to the Members' area of the website if anyone would like to read them.