Friends
10 February 2012
Well it's another wintery start to the day as I sit down to write. My dog Bisto is loving the snow (just had to take the opportunity of showing off my gorgeous boy).
Many, however, with stiff, painful and aching joints will be feeling the pain so much more as the temperatures drop. I hope that you all are able to keep warm and mobile and find ways of helping with your pain and stiffness.
It's been another busy week in the NASS office. Work is underway on the Spring 2012 edition of our member magazine, AS News which promises to be another eclectic mix of all things AS and NASS related. We've responded to a request for information on pregnancy-related advice, discuss whole body cryotherapy and generally let you know what we've been up to and what we're planning.
Last weekend I was reading an article in one of the Sunday paper magazines which was looking at female pop stars who always look miserable. The article concluded that these miserable women were miserable because they didn't have many friends. It got me thinking about the role of NASS (I don't switch off easily). I feel very lucky to have many friends, some of whom despite them moving all over the world, I've been friends with since I was 6 years old. And I know that my very special friends would all be there for me at the drop of a hat if I needed them, as I would them. But, people have busy lives and I am guessing that some of you out there when having a particularly bad day might need a friend, but one just isn't available there and then. Well we are. NASS is here to be that friend. We have our helpline that you can call in your hour of need and we have our branch network. I have visited many NASS branches over recent months where it is very obvious that these people don't just exercise together - they are friends in many cases, providing support to one another, often fuelled by outbursts of good old laughter! Our network of 86 branches is one whole network of friends.
Also don't forget the forum which is a really supportive group of NASS members who regularly post and will always respond to the posts of those in need of help, advice or who just need to have the opportunity to have a good moan.
This week I travelled to Sheffield to meet with a lady called Beth who is a fabulous artist. Despite having a long-termillness herself and facing many daily challenges, Beth continues to paint and create amazing works of art. Beth has donated a painting to be auctioned to raise funds for NASS. How brilliant is that! I've attached a photo of this lovely picture which would usually sell for £275 and watch out for the auction details on our website if you fancy seeing it hanging in your home. Thank you Beth for your generosity, and thank you for making me so welcome in your home.
The NASS team has now confirmed all the speakers for our patient conference in June. It really looks like a great day, action-packed with top speakers and the opportunity to socialise and make new friends. I am also told that it's a fabulous venue. And, the best part, it's free to NASS members and their guest! Come on, head to Leeds on 23 June - you know you want to!
So, today is my last day before I take a week's leave with hubbie and children. Soooo looking forward to it. Family time is always important but becomes even more so when you work full-time and don't take it for granted. Is it wrong that top of my list is to see the new Muppet Movie?! .......
Take care all. Debbie
Snow at last! I'm so excited
3 February 2012
Hi folks. So sorry that it's been a while since I blogged - things have just been so hectic. I've been all over the place (more on that later) and have hardly been at my computer.
So, what have I been up to? Well, last week I attended a meeting of the Arthritis Research UK Clinical Studies Group. These meetings are fantastic - not only do we get to discuss developments in research and refer topics through for potential funding of great and much needed necessary research topics, but I also get to sit in a room with some of the most brilliant minds in the field of AS and rheumatology. I am always completely humbled by those in the room. I won't mention them by name (as I will likely forget one and then offend) but I think it's so important to mention.
We see these people in clinic but probably never realise that they contribute to all this other ‘stuff' in the rheumatology world. They are so passionate about wanting to improve services, knowledge and understanding for patients and that's awe-inspiring. This is a theme that the Endless Trax blog picked up on this week too.
I get to contribute to the meeting, not only to consider the research topics proposed but also to advise the meeting what issues are arising through the NASS Helpline. One of the issues is the psychological state of those who have tried anti-TNF but it has not been successful in their case. Understandably, these people have heard about how ‘life-changing' these treatments can be and so become incredibly depressed when they still find themselves in pain and struggling to cope with their condition. This issue was picked up at the ARUK CSG meeting and at the NASS Council of Management meeting held last Saturday. Our medical trustees are going to come together to discuss what, if anything can be done about the issue. They really do care.
Last Friday I went to Bath, to ‘the Min'. I have recently become a Governor at the Royal National Hospital for Rheumatic Diseases (RNHRD) at Bath and so I went along last week to meet with the Chairman. A great meeting and a tour of the facilities was organised. The highlight for me had to be meeting AS patients on the course at Bath. NASS was founded at the RNHRD over 30 years ago and it is great to see the fantastic work that goes on with AS patients there. Patients attend a residential course where they cover all aspects of the condition, have regular physic and hydro, discuss their well-being, and cover many other topics such as podiatry. I can't do this course justice in a blog. I just know that the patients I met there last week, and the patients I met there in August spoke so highly of the course and how they had benefited from it. You can read one patients account of the course here.
I stayed over in Bath last Friday and met with the NASS Council of Management on Saturday for a full trustee meeting. We got through a great deal of business; our approach to Trust Fundraising, our developments and approach to Reactive Fundraising, our Ethics Statement, Helpline activity and trends and physiotherapy at NASS branches. We also had a lively debate about the issue of one hospital (who at this point is still remaining nameless because I am hoping we can come to a sensible conclusion) charging a NASS branch an extortionate amount of money to use the hospital facilities. Here we go; I feel frustrated just blogging about this! I need to calm down! These branches are providing weekly physiotherapy and hydrotherapy for patients; keeping them mobile and checking regularly on their well-being. This service benefits the NHS greatly; people are ‘self-managing' their condition; taking responsibility for their own exercise and physio. How can they consider over-charging!!! Right, I need to move on, getting worked up! Many of our trustees felt strongly about this issue too and you can be rest assured that NASS will campaign heavily to protect the future of our branch network.
On Monday of this week I attended a Steering Group meeting for the Immune Mediating Inflammatory Diseases (IMID) Conference which this year is to be held in London. This event is sponsored by Abbott and brings together patients groups from all over the world to discuss current issues and agree future campaigns. I am delighted to be part of this and am very hopeful of it being a great event in September.
Wednesday was a busy day. I had my appraisal with the Chairman of NASS, Hedley Hamilton and Stephen Dean, a member of the NASS Executive. That went really well. I've now done my first eight months in the role. I am really hopeful that all of you, members and supporters are pleased with the direction that NASS is taking but please, please do give us your feedback, as I keep saying, it is your charity.
I went to our Tooting branch on Wednesday night. What a fab branch and fabulous facilities. Thanks to all at Tooting for making me and Maddy so welcome. It is always great to meet people that are benefitting from the work of NASS. Tooting really is a vibrant branch and it was great to see - people of all ages and abilities, but mostly young people, coming together to exercise and help them to manage their pain and mobility.
So..... Then this morning I got up, to a blanket of snow, and like a child got quite excited. Took a photo, posted it on Twitter straight away (and I know my husband was shaking his head as I did so) - like we've never seen snow before! And, it's the weekend and we are expecting more of it. Time to stock up on munchies, sit around the fire and watch old films I reckon.....
Take great care all. Debbie
Mood Hoovers!....
19 January 2012
So folks, this is how my working week started. As many of you know, I don't live in London and commute in for part of the week from Lincolnshire. So Monday morning I am ready at 6.20am to leave the house and drive to the station (which will remain nameless to protect their innocent personnel!). I quickly realised, owing to it being minus 4 degrees that my car was frozen over and so I had to defrost it delaying me a little. The roads were slippy and of course, owing to it being a rural county I quickly got behind a tractor/trailer type vehicle. Now you know that I had resolved in the New Year to give myself more time and so I didn't panic too much. It did put me back however. I got to the station at 7.13am; my train was due to leave a t 7.20. Now here's where it starts to go downhill. I have to buy a parking ticket from the counter so I went to the counter as usual. On seeing a large queue for the ticket collection machines I politely asked the lady behind the counter if she would mind dispensing my tickets and told her why. It was 7.17am by this time. ‘What time is your train?' she asked. ‘07.20 I replied'. ‘There's a ticket machine over there' she miserably retorted. Now this lady also knew, having just given me my parking pass, that I also had to go back to my car and display it, so to collect my ticket was likely to result in me missing the train. I have had my pre-ordered tickets issued at the counter before (when the collection machine had broken) and it literally takes 10 seconds! So I ask you, why did this lady, employed in a public facing role appear to take delight in starting my day badly. I could feel her condescending thoughts of ‘WELL, you should have given yourself more time'. These people are MOOD HOOVERS. Just a small action from them can hoover up all the happiness you feel. If they've had a bad morning, they are going to ensure that everyone around them knows about it. Now I'm not saying that these public-facing employees have to be happy all the time, but come on, they shouldn't go out of their way to be unhelpful.
I made the train by the way, by the skin of my teeth but the behaviour of that lady bugged me all the way to Kings Cross (and a bit more). And, it's still only 9.30am.
My onward journey took me to the British Orthopaedic Association for an ARMA (Arthritis and Musculoskeletal Alliance) CEOs meeting. At the meeting we talked a great deal about how the Musculoskeletal (MSK) community needed to come together and work hard on key messages for the Department of Health and Commissioning Guidelines in readiness for the reformed NHS proposals being implemented. Clearly, such a tool will be vital in ensuring that once GPs are commissioning, that they understand MSK conditions and obviously in our case, AS. And the great thing is that NASS has already made GP awareness a priority for 2012 and so hopefully more GPs than ever will have a better understanding of AS and the required treatment pathway in readiness for their commissioning role and the changes.
Monday was also the day when NASS welcomed Sophie Matthew to the team. Sophie takes on the role of Campaigns Officer for a temporary 9 month period which will be reviewed thereafter considering the charity's finances. Sophie's main responsibilities are to raise awareness of AS, particularly with Members of Parliament and key decision-makers, to widely publicise the findings of the document Looking Ahead and also to deliver the GP awareness project (again, widely circulating the recommendations in terms of patient care for AS in the Looking Ahead document). Sophie has a long association with NASS and has been a member of the NASS Camden branch for a number of years. Welcome Sophie, we are delighted to have you on board.
Also during this week, I have been busy working with Maddy on protecting the future of one of our branches. I am not going to go into much detail as negotiations are ongoing but I have to say that one particular hospital wanted to charge the NASS branch an absolute fortune for continuing to use its facilities. Their review of the branch only looked at the finances and failed disastrously to recognise the value this branch was adding to the rheumatology service in terms of those patients self-managing their AS. This branch is effectively in my opinion subsidising the NHS and likely saving a fortune in terms of clinical time needed. These patients are keeping themselves mobile and also looking after their wellbeing by meeting with other people with AS every week to talk about their condition in addition to undertaking physio exercises and hydrotherapy. I see a long battle on our hands if people holding hospital purse strings are only prepared to look at the numbers! This is an area where NASS desperately needs to campaign more.
I had a great meeting with the NASS Executive this week too. I really do feel that we are moving the organisation forward. There's a still load to do but I really hope that our members and supporters are noticing a change and feel we are moving in the right direction. As you all know, I am always pleased to receive feedback. This is your charity after all.....
Take care all, Debbie
Happy New Year
6 January 2012
So, it's 2012 already! Happy New Year!
The last time I blogged I was just about to take a break from work and spending time with my children. What a fab time we had. We baked shortbread, went to see Arthur Christmas (which is fab by the way and an absolute must for children asking how Santa does it all in one night), caught up with family and friends and generally had a ball.
Thank you to all those who sent lovely festive messages through cards, emails, Twitter and Facebook messages - all extremely heart-warming. I hope you all had a lovely, relaxing, enjoyable festive break. I had requests on Twitter for sight of my Christmas Cake - how funny, I would never have predicted that. I can report that, even if I say so myself, it tasted wonderful. I was so pleased with it and took lots of pleasure seeing it scoffed by family and friends.
Most of you will be aware that this is my first job working in the charitable sector and I have to say that this year, more than any other I thought about all the great work that charities do, particularly during the festive period. Whilst I have done bits for animal charities in the past, not a great deal, I want to try to make a conscious effort this year to do a bit more. And, I know that these people need support all year round, but I am guessing that if we all could find time to volunteer just once a year then it would be a huge help. I'm not sure where I'm going to find these extra hours, but I am going to try.
So, what does NASS have in stall for 2012? Well we started the year by hitting 1200 downloads for the Back To Action App. Wow! And that is before we make it available on all android phones - a project I still wish to pursue.
At yesterday's team meeting we talked about the year ahead. Some of the highlights include our Patient Conference which we now intend to hold annually rather than bi-annually. This will be held in Leeds on 23rd June and will be FREE to all NASS Members plus a guest. We have some amazing speakers lined up and I will talk more about this as the weeks go by. Make a note in your diary though and tell all your AS pals.
NASS en Masse is getting bigger too with events in Richmond, Glasgow, Cardiff, Portsmouth and a family fun day in Manchester. We are also hoping to hold an event in the Midlands. These events will be a day out for all the family this year - we will be having medals for the children, picnics and fun, fun, fun. Look out for news on the website soon.
NASS is also planning a ‘Thank you' event later in the year for all its marvellous fundraisers - again more on that another time but hopefully it will be in September. We couldn't carry out our work without the help of those prepared to fundraise and we are so, so grateful and this is our way of showing it.
Branch Development Conferences will also be held in 2012 and 2013 and dates will be released shortly - NASS really is coming to a place nearer to you!!!!
For a while now, NASS has been working with the Prescription Charges Coalition aiming to make prescriptions free for those with a long-term conditions and also asking for current prescription charges to be frozen. Please, please sign this petition. Tell all your friends about it too - all on the NASS website.
So, any new year's resolutions? I have been making one for the last 6 years to lose half a stone - and I haven't! So, I am not doing that this year (I still have too many Christmas goodies in the pantry). I am going to try and get around to it before the summer holidays! What I am going to do though is make more regular contact with those I care about. We all say we don't have time, but it's so much easier nowadays isn't it. We don't have to sit down and write a letter, we can just send a text or a Twitter message! I've started texting my friends from the train early morning - I'm lucky to have lots of friends but some of them might get cheesed-off if I wake them with my early morning ‘hellos!'. Perhaps I am a little keen..... it will wear off I'm sure, but again, the thought is there....
Anyway, I think that's all for now. It's the weekend. Yippee!
Best wishes, Debbie
The Christmas Cake!
20 December 2011
Hi all. Now then, don't forget this is only the second Christmas Cake I've ever made and the last one was 15 years ago! I've talked about it here and had requests to see it. Sooo, here it is. Let's hope it tastes good......
Merry Christmas one and all. Debbie
My Christmas Blog
16 December 2011
I can't believe it, my last blog before Christmas! I am taking leave as of today to have some time with my children before the big day itself. We've got so much planned... but before I tell you about all that, a little on the NASS front.
Another great few days. In order to recover from my 9 year old daughter's birthday party, I spent a morning with our treasurer to run through the NASS budgets. I always feel better when we've done this. To be honest, numbers are my least favourite things and thankfully I started the exercise with trepidation and ended up happy and comforted that I had taken a peek. Obviously, our budget is so important and I have to keep a regular eye on it but our treasurer, Simon explains it all so well.
Wednesday was Social Media Training day for us all. Since I started with NASS we've been tinkering at the edges with social media but I want it to be part of everything we do, our day-to-day business. Engagement, particularly with young people is key to our campaigning work. So look out for more of this in the New Year, along with many new media-related initiatives.
The NASS team went out into Richmond for our Christmas meal on Wednesday night and had a great time. I would like to put on record my thanks to all four of them, Maddy, Jill, Sally and Ingrid for making me so welcome in my first 6 months as NASS Director.
I met with colleagues from MSD on Thursday to talk about NASS' plans for 2012. It was my first visit out to Hoddeston - in fact it was my first visit to Liverpool Street station, London!!!! Thanks to all at MSD for making me so welcome.
Whilst at MSD, I was able to tell them about our new temporary Campaigns Officer that will join NASS in January. I'll say more about that in the New Year but we have high hopes for this post-holder in terms of campaigning on Looking Ahead and our GP awareness project in 2012. We want key decision makers to be talking AS; in fact, we want as many people as possible to be talking AS.
So, my last working day today before Christmas. I had my first Ankylosing Spondylitis International Federation Executive meeting this afternoon. I have high hopes of what ASIF can achieve in the New Year. I also had chance to catch up with Liz from Healthcare At Home and I am heartened by what our two organisations can achieve towards improving patient services by working together.
So, my plans for next week and all that free time:.)
I think we will go and see Arthur Christmas as I hear it's a fabulous festive flick. Some family and friends visits in Derbyshire to fit in. Maybe a bit of baking. Which brings me back to my Christmas cake, which I really must take out from under the bed (I don't know where the time has gone since I made it). Maddy tells me that it might be OK as I put soo much alcohol in it to start with. So, fingers crossed. I've promised Sally that I'll post a piccy of it if it's any good. So watch this space.....
Have a wonderful Christmas all of you. Health and happiness to you for 2012.
Take care all, Debbie
A trip to the Department of Health and a feature on Channel 4
7 December 2011
It was an early start on Monday as I had my first ever visit to the Department of Health. As some of you know, I don't live in London and travel in from North Lincolnshire, working from home some of the time, travelling up and down the country often, and some of the time working from the Richmond office. So, occasionally when I have meetings in central London I still feel a little bit like a tourist en route! This was the case on Monday, as just before I went into Richmond House, home to the Department of Health, I noticed Downing Street opposite and so had a little glance over at the Christmas tree. I am so easily pleased, I love anything Christmassy and had obviously seen the media coverage of the arrival of the said tree.
Anyway, back to my visit to the DOH. I had been invited to attend a workshop which had been partnered by Arthritis Research UK. The topic for the day was Personal Health Budgets. The day started well as I spotted a colleague, Colin Beevor in reception. Colin is part of an amazing team which works out of Portsmouth hospital. We have a thriving NASS branch in Portsmouth and the team there provide a wonderful approach for AS patients, holding patient information days and running Healthcare Professional events. Colin is also on the NASS Medical Advisory Panel. It was also great to meet with colleagues from NRAS, the Lupus and Fibromyalgia charities and the British Society for Rheumatology to name a few out of the many organisations represented.
It was a wonderful opportunity to discuss with the DOH the potential issues which could arise with the introduction of Personal Health Budgets. There could be a huge role for patient-led organisations in terms of giving advice and information.
This new policy initiative is being piloted across the country and is one we need to keep an eye on. It will be likely to have advantages and disadvantages. My hope is that the DOH will consider the changes that will be needed in the whole healthcare system to make this work. In my humble opinion this is a policy initiative which cannot be implemented in isolation and there is much to be worked through before a possible implementation date around 2014. I will, as ever keep you posted.
I would like to thank Arthritis Research UK for hosting the day as it is vital that patient organisations such as NASS are given the opportunity to have an input into these policies at an early stage. I am hopeful that the DOH has listened to all the views expressed on Monday.
Last night, AS got more coverage on the TV. Did many of you catch the coverage on Channel 4's The Food Hospital? I thought, all in all it was a balanced piece and of course, I am over the moon that AS got national coverage again. This is vital in terms of NASS' mission to raise awareness of the condition. The low starch diet featured on the programme has been debated many times at NASS trustee meetings and indeed at this year's AGM. Professor Paul Wordsworth (Oxford) will be writing an article on this very topic for the spring edition of AS news.
Am taking the day off today to go Christmas shopping with my husband which should be fun. Tomorrow I have a meeting with Andrew George MP who has always been a supporter of NASS. Will let you know how that goes..........
Take care all, Debbie
All over the place
1 December 2011
Soooo, what has been going on since my last blog? Well, straight after my daughter's birthday I headed off in the very early hours of the morning to attend the Ankylosing Spondylitis International Federation (ASIF) conference in Turkey. If I'm completely honest I was dreading the travelling but it was worth it. At the event I managed to meet so many representatives of AS patient organisations from across the globe and swap stories about good practice, treatment methods and the challenges facing a patient organisation in today's world. I gave a presentation on the work of NASS with particular emphasis on the need to engage with patients and their families across the whole age spectrum. Whilst I was there I was also elected onto the ASIF Executive and I hope to be able to make a positive contribution to the AS worldwide agenda and the need for the World Health Organisation to have AS on its agenda.
The problem with cheap flights (in this instance) was that on my way home I had a 5 HOUR WAIT on my own in Munich! ‘Right then' I thought, I will turn this into an opportunity and start my Christmas shopping. It was not to be - everything I liked was over £500! I spent some time looking at the NASS Guidebook! We are making changes and updating it and Sally had given me a draft to look at. As great as our guidebook is, after a while I could fight it no longer and out came my girlie novel. In these situations you just have to do what you have to do!
The following week saw me attending the first SParKLe event at Leeds. Sponsored by Abbott, this SpondyloArthritis Knowledge and Learning event gave me the opportunity to present to a fabulous audience of about 45 healthcare professionals, mainly rheumatologists about the work of NASS and how NASS resources can be used to help patients manage their condition and also how NASS can provide support particularly through our helpline. Now I have seen a number of the most amazing rheumatologists in my time and the care I have received has been first class. Having said that, when you attend clinic, what you often see are health care professionals that are very very busy. What you don't always see (in my experience because of time restraints and busy clinics) is the passion and dedication of these people. At the SParKLe event I got to engage with all of these people over two days and their compassion for their patients, and their desire to improve services and understand the condition more was overwhelming and truly inspirational. As a result of me attending I got to speak to many people who would like to start a NASS exercise branch in their local area or hospital so hopefully these plans will all come to fruition. I truly want to expand and develop the 83 NASS branches we currently have. The only downside to the event in Leeds? Absolutely no time for shopping...........
Yesterday, I had a day off and went to a spa with my very dear friend. It was amazing, just total relaxation for 8 hours. At the end of the day I asked my friend Sal, if she had a sore throat - I thought one of the heat rooms might have affected both in the same way. She reminded me that we had been talking solidly for the last 8 hours and that might, just might be the cause....
So, this weekend I have the NASS Council of Management meeting which is being held at the founding place of NASS, the Royal National Hospital for Rheumatic Diseases. A heavy, busy agenda but hopefully a reflection of how the NASS team (staff, trustees, patients, volunteers) are progressing the work of this great charity.
Right, back to my Christmas cake! Well it came of the oven and looked great. I am conscious though that apparently over these last few days I should have been feeding it with alcohol (and I just haven't had the time). So, got to do it tonight - please, please don't let it be dry when I fetch it from under the bed!!!
Take care all, Debbie
A new NASS branch in Leicestershire
15th November 2011
Great start to the week yesterday - the launch of a new Leicester and District NASS branch. This branch has been born out of the dedication and commitment of a group of people with AS who saw the need for an exercise and support group, Consultant Rheumatologist, Dr Moorthy and with the assistance of our NASS Branch Development Officer Maddy. NASS assisted the launch with a small grant and last night an auditorium at the University Hospital in Leicester was full of people interested in the group. I was privileged to be asked to speak alongside others including Dr Moorthy, and a local GP with an interest in AS, Dr Moriaty.
There were two highlights to the evening for me. The first was hearing from a handful of people who told their own AS stories. Having battled against this painful disease it was amazing to hear that they kept a positive, can-do attitude. All of them had taken responsibility for trying to manage their condition as best they could through exercise, by joining the branch. Recent events in the media have highlighted that some people with AS can exercise far more than others, indeed we know that some people are no longer able to exercise at all, but these people were inspirational in their dedication to keep moving.
The second highlight was meeting Alicia Ward. I made a presentation to Alicia in recognition of her dedication to fundraising for NASS during the last 5 years. Alicia, who has her own health issues, has raised over £4000 in the last 5 years for NASS. She does this in memory of her late husband David who had AS. How marvellous is that! It was great to meet face to face and Alicia, if you are reading this ‘thank you so much' again and again. NASS is only able to continue to support people with AS if we have the funding to do so and fundraising plays a huge part in our work.
The downside to my evening was Leicester's one way system......and in the dark. It's a while since I've been to Leicester and don't get me wrong, it looks great (and the shopping looks fantastic), but that road system stresses me out!
I wish to NASS Leicester and District branch all the very best and I would like to put on record my thanks to everyone involved in getting this branch off the ground. I am sure the group will provide much needed physiotherapy and also much needed emotional support to many AS patients in the surrounding area. NASS has over 80 branches across the country but we know that many of you out there do not have a branch within 10 miles - if that's something you'd like to change, get in touch with Maddy at NASS who will be more than happy to help.
So, that was my Monday. It's Tuesday evening now. It's my oldest daughter's 12th birthday tomorrow so I've lots to do and my Christmas cake has been in the oven for an hour. It's the first time I've made a Christmas cake in about 15 years. My mum usually does it but this year I felt like having a go. If it goes well then I'll likely tell all, if all about the cake goes silent then you'll know that all is not golden....
Take care all, Debbie
AS covered on national television
10 November 2011
Well I've been back from my holiday a week now and this is the first chance I've had to write my blog? I was straight into a meeting about the ASleep project (which I've promised to discuss in more detail at some point) but which is intended to raise awareness about AS. It was then on to a meeting with Ailsa, CEO at NRAS (National Rheumatoid Arthritis Society) to discuss good practice, ideas and working together (thanks Ailsa). This was followed by the ARMA (Arthritis and Musculoskeletal Alliance) AGM where it was great to get recognition for the work NASS and its members did for World Arthritis Day. There was much discussion about the development of musculoskeletal services and the proposed changes in the NHS and implications for patient groups (something which we will feature in the next AS news). We were also shown a video produced by EULAR on a work charter - something which interested me greatly as NASS is keen to do a further piece of work about explaining AS to employers and helping employers to understand how they can help people with AS continue to work. So, that was Thursday - three meetings through a cloud of jet-lag, but all great and totally worthwhile.
Great day in the office last Friday catching up on all the work the NASS team have been doing whilst I was away. I started the day relieved at having been able to sleep the night before - this jet-lag thing is all new to me as I'm not well-travelled (and to be honest I still think I'm a little out of sync!).
Tuesday started with our NASS Executive meeting, followed by a further ASleep meeting, after which I made a brief visit to Covent Garden on my way to get the train home. Wow, that reindeer there is amazing - starting to feel Christmassy!
Hopefully as you read this you will already be aware that AS featured on ITV`s This Morning on Wednesday 9 November. We were advised by ITV at the beginning of the week that Adam Rickitt would be on the show to discuss his AS and his 10 mile a day run. We pointed out the facts about AS and recommended levels of exercise and were delighted to be asked to provide a rheumatologist to talk in more detail alongside Adam. Thankfully, Dr Raj Sengupta, one of our NASS Trustees and Medical Advisors and Consultant Rheumatologist at the RNHRD, Bath was able to step in at a day's notice and he did a great job. Now, we all know that not everyone with AS can run 10 miles a day! We know what a painful condition AS can be and we also know that AS effects people in a variety of ways and on a varied scale. I am aware that Adam's interview gave one extreme viewpoint and that there are many others (which NASS will work hard to see represented). What the This Morning coverage did though, was put AS in the media, on a national stage, which is great. We want AS to be talked about. On the day of the show, NASS received 1163 new visits to its website - this HAS to be good news. I would like to thank Adam and Raj for raising the profile of the condition and also say that NASS will aim to get more patient stories in the media (we are already talking to ITV). If you have a story - let us have it, please. Twitter also went mad as a result of the coverage - not everyone happy with how AS was represented but some over the moon at the discussion. I am enjoying engaging in the Twitter sphere - it's great to feel I am able to make a direct connection with people with AS and hopefully this will be used as a channel to feed back to NASS what people want to see happening. I have 167 followers now @NassDirector which is a great start to NASS' venture into the world of social media.
This morning I was privileged to have a chat with one of NASS' founder members, Mary from Bristol - isn't it great that people had the forethought to set up this wonderful organisation.
Anyway, will try to blog more frequently in future (did I say that last time..................................)
Take care all, Debbie
NASS launches its first APP on World Arthritis Day.......
17 October 2011
Well, apologies that it's been a while since my last blog! It's been really busy with all things NASS.
I spent a lovely evening at the NASS Norwich branch on 5 October, giving a presentation at their AGM. What a lovely branch they are at Norwich (indeed I have yet to meet a branch this isn't). They made me very welcome. Thanks NASS Norwich for a lovely evening and keep up with the weekly hydro.
As I say, things have been busy with the lead up to World Arthritis Day (WAD) last Wednesday. All of the NASS team has worked incredibly hard on our WAD activities.
So, what was our big news? Well, last Wednesday NASS launched its very first App, Back to Action, available for free download. Not only that, we put 15 of the the videos from the App onto the NASS website and we have made the Back to Action guidebook available for free download too! We really do want to get Back to Action out to as many people with AS possible. So far, we've had great feedback, and many 5 star reviews on the App. We are also App of the Week in ‘Chemist and Druggist'.
Some of you have been asking whether we can develop the App for use on all android phones. The short answer is that we don't yet have the funds available to do so... but we are working on it! All of you out there though with access to the App - please tell all your friends to download it and have a look, the more downloads we can get - the higher the profile for the App and subsequently AS.
We had over 30 branches Stretching for NASS on World Arthritis Day - thank you so much to all of them. If you haven't yet seen the Stretch for NASS gallery on our website then do please take a look. People with AS having sooooo much fun.
I attended the Stretch event at Westminster organised by Gillian Eames (thank you Gillian). Gillian and friends managed to raise the profile of AS at this event with numerous MPs and at the same time get lots more signatures on the NASS petition.
As a result of the work that we did on WAD we have been promised loads of national media coverage so watch this space and I'll keep you all posted.
This will be my last blog for a couple of weeks as we are taking our main holiday in October this year. When I get back I have just realised that it's only 7 weeks to Christmas! For those of you who haven't yet bought your Christmas Cards have a look in the NASS shop at our lovely ones designed by members' children and grandchildren - they are delightful.
So, speak to you all again early November. Take great care all, Debbie
So why did I join NASS?
Friday 30 September 2011
‘Why did you want to work for NASS?' has been a question I have been asked quite a lot in the few weeks that I've been Director. ‘Have you got AS?' has also been queried many times.
So, now I intend to put the record straight. In 1997, at the age of 26 I had a bad episode of iritis. The pain, well I don't need to tell most of you. It was the year I got married and with the wedding just weeks away at the time, I couldn't believe that I would ever recover in time.
I'd been suffering lower back pain for weeks before the iritis flare. I had a second episode before I got married and was referred to a rheumatologist. Having had psoriasis as a child, it was explained to me that I had AS (or one of its family). I was ‘hyper-mobile' and so that also seemed to complicate the issue at the time, although of course I was very grateful for my ease of movement then.
I was referred to the local NASS branch which I attended semi-regularly (I know, don't say a word) until we left the area. The lower back pain and stiffness never went away but as I am HLA-B27 negative I was always a little sceptical about my AS. So now you know, why NASS out of all the charities out there. I had such a positive experience with a NASS branch back then, and of course I've never forgotten it.
But, back to more recent times, after doing 22 years in Local Government and my masters at the University of Warwick, and then deciding that the charitable sector would be a great avenue to explore, I came to NASS as you know. I was very reticent to say I had AS however, when asked due to the little niggle at the back of my mind. I
therefore asked Dr Andrew Keat, a hugely respected AS specialist, to assess me so that I could be very clear with our members. An x-ray showed sacroiliitis, but my MRI was good - I do not have AS. Clearly, there is something going on causing such intense lower back pain and stiffness etc but it isn't AS and that's what I feel you, particularly those that have been asking, need to know. It will not affect my dedication to the charity, but I hope it goes some way to explaining, why NASS.
Last week was a busy week. I spent time in Birmingham with a number of hugely respected AS healthcare professionals (I won't name any as I can't name them all) who all work tirelessly to improve treatment for AS patients. I felt totally humbled in the room.
On Friday night, I travelled to Oxford, for my first Council of Management meeting with the NASS trustees. I've never been to Oxford before but I am definitely going to go back with my family - what a beautiful place. Still, it was business only at the weekend and I will return to take it in in full at a later date. The meeting went well with the Council receiving an update from me on all that's going on, our plans for World Arthritis Day. We set a provisional budget for next year.
The main item on the agenda however, was a report from our Branch Development Officer, Maddy who presented her report on the whole of the NASS branch network and the work needed over the next three years to support it. This will be a huge priority for NASS. Other priorities will be campaigning on the Looking Ahead report (ASAP), raising awareness, GP awareness and our approach to social media and how we can best communicate with younger people.
Golimumab now approved for AS
Friday 9 September
Can I first of all apologise for my lack of ‘blogging' recently. You all know that I am new to blogging but I am sure that there is nothing worse that someone who doesn't keep it up. I'm afraid that my absence has been due to a little stay in hospital and then a period of just under two weeks when I've not been at all well. I won't go into details but I have to say a huge ‘thank you' to the staff at the Lincolnshire NHS Louth Hospital, Manby Ward. I received great care there during my stay and I witnessed first-hand the dedication and professionalism of NHS staff. I also noticed that some of them worked very long hours.
Anyway, I'm back! I'm a little on ‘go slow' as I am still very tired but as usual, I am keen to get on with the challenges ahead. I also have to say a huge ‘thank you' to the NASS team who did a great job in my absence. You will all know that I've only been with NASS for a short time and so it was great to see the team working so hard and with a great purpose and going to great lengths to ensure that I had nothing to worry about - thank you all.
Anyway, the great news is that whilst I've been away, NICE has recommended the use of the anti TNF therapy golimumab (Simponi) for AS. This treatment will be available alongside adalimumab (Humira) and entanercept (Enbrel) for people with severe AS, whose condition has not responded to standard therapy. Thank you to all who helped NASS with the NICE appraisal process - this is a real success story and great news for people with severe AS, giving another treatment option.
We are busy with preparations for World Arthritis Day on 12 October - make a note of the date in your diary and look out for exciting news from NASS.
Anyway, bye for now... and I promise to keep up the regular blogging in future.
From Bath to Derby in a day
Wednesday 17 August
Great week again last week (I know I say that every week... which is good!). A conference call on the ASleep project (those involved in this project are spread across the Globe) on Wednesday evening meant that I had to drive to Bath in the dark. I arrived at Bath at just before midnight - which was such a shame as I would have loved an opportunity to have seen more of such a lovely place in daylight hours. Still, I was there and ready for my meetings first thing on Thursday.
My first meeting on Thursday morning at Bath was with Dr Raj Sengupta. This was the first time I'd met Raj and what a great meeting it was. Raj was telling me all about the Min (and later on, I was able to meet AS patients on the course who were full of positive things to say about their time at Bath). Raj and I only managed a brief meeting but I was interested in all the work that he is involved with and have committed to going back to Bath and to discussing with Raj how NASS can get involved in this work and also develop even better links with the RNHRD.
My next meeting that day was with Gillian Eames and her colleagues, Rob and Daniel. Another great meeting. I was able to tell them all about the exciting work NASS has planned, all of which they were keen to support. NASS is always grateful when people put so much time and effort into raising the profile of AS and the work of NASS to help people with AS. Thanks Gillian, Rob and Daniel for taking time out to meet with me.
Next stop for me was Derby. I didn't have a great deal of time, so I forfeited a quick stop off to get some lunch for a quick call into a couple of shops - well, it's such a lovely place, and the shops looked so appealing. Luckily, I only had chance to call into a couple of shops and purchases in hand, I made the quick dash to Derby. It didn't matter that I'd missed my lunch, choosing instead to feed my shopping addiction, as when I got to Derby, well, they had gone to sooo much trouble and a lovely buffet greeted me. I had heard some lovely things about the warm welcome at Derby and I have to confirm it is true. There was such a great turn out from both the Derby and Burton-on-Trent branch last week and I want to thank them all sincerely for making me so welcome. I would also like to say a huge THANK YOU for the £500 cheque donated to NASS - your continued support is much appreciated. Whilst I was at Derby, I met Dr Chris Deighton, President Elect of the British Society for Rheumatology. Dr Deighton has very kindly agreed to speak at our 2012 patient conference on 23rd June next year - put the date in your diaries! And thanks Dr Deighton for agreeing to do this, in what will be a busy year for you.
Now I know you'll all be waiting to hear.... my best friend's wedding! It was fabulous, and if I say so myself, the bridesmaids looked beautiful (as did the bride)! Well done Scarlet and Daisy - you were fabulous bridesmaids and I was very proud of you.....
Taking Back to Action to the next level
Tuesday 9 August 2011
Wow, it's nearly two weeks since my last blog! I should be ashamed of myself. What's my excuse? Haven't got one. Just been a really busy couple of weeks and I have taken a couple of days off on leave on preparations for and enjoying the run up to my best friend's wedding (more on that later)....
Since my last blog, I have been working with Claire Harris, Claire Jeffries and Tim Jones on the development of Back to Action. This is such an exciting piece of work that we are hoping to have ready soon. Keep reading and I will tell all in my blog. It really is going to be great and should be a massive asset to raise the profile of AS.
I've also been working with the AS International Federation (ASIF) on the ASleep project. As you know I've been asked to project manage this great piece of work. Last week I had a meeting with the brand company being used by ASIF to develop ASleep. The project is going well and it was great to have an identity starting to develop. Just to recap - ASleep will be about people with AS improving the quality of their sleep when staying in hotels. The project is founded on the principal that sleep disruption is a real problem for people with AS. We are hoping to work with AS friendly hotels, with the aim of hotels providing a number of facilities including pillow and mattress choice. Again, I'll keep you all posted on this great initiative and its progress.
On Thursday I am off to the RNHRD in Bath. I am really looking forward to seeing for myself some of the great work being done there with people with AS. I am also meeting Gillian Eames and colleagues to discuss the NASS petition. Please sign up on the NASS website for swifter diagnosis and equal access to the best treatment for people with AS in the UK. It's only a quick visit on Thursday morning though (and I will be arranging to go back) as I'm off to visit the NASS Derby branch in the evening. Looking forward to that - I hear great stuff about the Derby branch and the work of its members (plus Derby County is my team so it's always good to be back in Derbyshire, a place I will always call home).
Sooo, back to my best friend's wedding. It's happening this weekend and both my daughters are bridesmaids. I am so excited. I will definitely cry. ‘Have a fabulous day Jane & Keith - we've waited 20 years for this wedding'. Only 5 more sleeps (as I will say to my girls tonight).......
Visiting the hospital where my children were born (and all part of the job!)
Wednesday 27 July
I was busy last week on the ASleep project. On Wednesday I was asked to manage this project and the roll-out of this work in the UK, Turkey and the Netherlands. This is an ASIF (Ankylosing Spondylitis International Federation) project sponsored by a pharmaceutical company. ASleep aims to provide a tool to help people with AS to find an AS-friendly hotel and also get a good night's sleep! It is hoped to secure a programme of work with international hotel chains who obtain a sign of that hotel's commitment to sleep quality. I am really excited about ASleep because it looks to put AS on a world stage and anything that raises the profile of the condition has to be good news.
I will keep you all posted on the progress of ASleep. If you want to contribute to the on-line survey about sleep quality and your experience or requirements of a hotel you can still do so on the NASS website.
I had a great start to this week - a visit to the Burton-on-Trent NASS branch. Both my children were born at the hospital in Burton (before we moved to Lincolnshire) and so to return as NASS Director was a real pleasure. The Burton branch has the support of an excellent team and has been operating since 1983. We talked about how the branch could work with local businesses and I agreed to try and secure a meeting with the hospital Chief Executive to ensure that the importance of sustaining this branch (and indeed the whole of our branch network) is recognised.
What our branches need generally, is more young people! I am guessing that it is not perceived to be a ‘trendy' thing to do - to meet up with other people with AS and exercise. But how many out there vowed when first diagnosed, to exercise every morning but the years have slipped by and they just never seem to find the time (it's easily done). Being part of a branch gives you the discipline of attending every week and exercising properly under the guidance of a physiotherapist. There is also a huge social side to many of our branches and they can offer such a support when first diagnosed or generally just on living with the condition. If anyone has any ideas on how we can appeal to young people and get them attending our branches then I would be happy to hear them.
This afternoon I am off to attend the Arthritis Research UK Clinical Studies Group in Spondyloarthropathies. This is the first time that I have attended this meeting and I look forward to finding out more about this work (and of course, to keeping you all informed.....).
Start spreading some Christmas cheer
Tuesday 19 July 2011
Last week ended with a great team meeting in the NASS office. We discussed so many things that as a charity we would like to do. Of course, we have to consider our budget, time and resources but it's appropriate I think to have aspirations for the charity.
One of the things that we need help with is the Sign Up for Change petition. We need to get as many signatures on the petition as possible and so I would ask that if you haven't already added your name, then please do so on the NASS website. We will happily send you hard copy documents of the petition to get signed by your family and friends if you get in touch with the NASS office. I am conscious that not everyone wants to sign up on line and there is something very traditional about passing a paper petition around to discuss and sign up to. We really do need thousands of signatures to get noticed so your help would be much appreciated - thank you!
One of the things we discussed last week was a NASS Christmas card. Apparently, this is something which NASS members have asked for before. So, we are taking a huge leap forward and are going to get on with this one very quickly! We know as a team that Christmas Cards won't add a huge amount to our fundraising total but for us that is not the point. This is something that members have asked for. What we want as a team too, is to engage with NASS members and their families. So we are running a competition for the Under 14s where two winners will be selected at the end of the summer holidays. Soooo, all you mums, dads, grannies and granddads out there - get your little ones drawing a picture for our card and if they win they will receive a fabulous prize. All the details will be confirmed in due course but, hey, the schools break up soon, it's raining at the moment, so they won't be going outside and you'll need something to keep them entertained!!!! Personally, with having two daughters of my own and seeing the delights they bring home from school, I am really looking forward to seeing the entries coming in. Children's creativity can be amazing and so refreshing.
The other things is of course, don't buy your Christmas cards until you see what we have to offer! We are hoping to have them available from early October (thanks to the huge efforts of other NASS team members - thank you Team!). You'll not only be spreading festive
