Leading a small charity - what's it like?
24 May 2013
So, what's it like to be the CEO of a small charity? Well, I thought a little look at what I've been up to in the last couple of weeks might give a snap shot. I'd never worked for a charity before joining NASS, but if I'd had an inkling that it was going to be this rewarding then I'd have made the leap from local government much, much sooner.
I hope it goes without saying that everything I'm about to highlight is on top of the usual day-to-day responsibilities that go hand-in-hand with leading a small organisation. For example, huff, puff, sigh, I'm in the throes of finalising the Annual Report at the moment. In one sense, it's great to look back on achievements for the previous year, but by the time I get around to writing it I'm already knee-deep in this year's exciting activities and keen to get on with them!
So, the last couple of weeks then. Well, I had the NASS Executive meeting. A monthly get together of a small group of NASS Trustees supporting me in the role and one of the meetings for which I provide formal reports. A full day of one-to-one meetings with the Team followed. Thursday night last week was reserved for a trip over to Grantham to meet the local branch of the Lions. A lovely bunch who listened and learned about Ankylosing Spondylitis and subsequently agreed to contribute £250 and further support to NASS. An extra bonus that night for me - I got to listen to some of the live Rod Stewart concert on Radio 2 on the way home - delicious...
Anyway, back to work! A weekend in Glasgow followed. A long, but pleasant train journey to meet other team members and help get our NASS en Masse sponsored walk in Pollok Park underway. It's at these types of events that I pinch myself. Working? Really? Meeting wonderful people who turn out on a cold Sunday morning to raise money for our great cause - I'd call that a privilege.
And that was the first week. Second week started with my own personal rheumatology appointment. You know what, no matter how much advice we give as an organisation, it's so different when it's you in the appointment, wanting answers, seeking help. I'm lucky I have a fabulous rheumatologist who understands that. But, as always I digress!
A trip to London and a meeting at the British Society of Rheumatology to chat about joint-working was in store mid-week, followed swiftly by another trip to Bath in order for me to represent AS patients and NASS at a Council of Governors meeting at the RNHRD; a potential hugely rewarding role in itself.
My time in Bath was followed by a meeting with the NASS Leicester branch and then home. Today it's more Annual Report (groan), loads of other stuff and a desperate attempt to finish work at a reasonable hour and take some leave before pitching up at Hyde Park on Sunday 2nd June for another NASS en Masse.
How would I some up my role as CEO of a small charity? Well firstly, we are a small charity with a huge heart and a big reach. My role? It's busy, demanding, interesting, hugely rewarding. No two days are the same. I'm lucky to have a great supportive team without which I would not survive! With every day that passes I am more passionate about the role than the day before. I'm shattered, but happy and content.....
Take care all, Debbie
World AS Day blog for the Huffington Post
7 May 2013
I was very excited last week to be offered a blogging spot on the Huffington Post for World AS Day. This really gave me the opportunity to get the AS message out to a wider audience on World AS Day. Huffington Post UK attracts 3.5m unique visitors a month!
I will update the blog regularly from now on so please keep an eye on it there. The more activity that happens on my blog - comments, being shared on Facebook and Twitter - the higher prominence the blog and therefore AS get!
This is the blog I wrote:
I've been on crutches for the last 10 days, owing to sudden and so far unexplained swelling and pain in my ankle and foot. On Sunday, partly because I had a mild case of cabin fever and partly because I felt my poor husband deserved a bit of support (!) I went to Tesco. Kindly driven and greatly assisted by my long-suffering husband.
Now, I've been to Tesco many times. And on many occasions I've been there when in pain. (I've struggled with lower back pain and stiffness since my early 20s). I'm a working mum, I have a full-time, demanding job, and to be honest, I really do like food shopping (but don't tell my husband). But, armed with my crutches on this occasion, I couldn't help but notice the looks of sympathy I received and how people looked as though they would have been more than happy to help me, if needed.
It got me to thinking about invisible pain again and the challenges faced by many who struggle on with a long-term condition that is invisible to most around them.
It's World Ankylosing Spondylitis (AS) Day on Saturday 4 May. Whilst advanced AS can cause fusion in the neck, spine and sometimes other areas and hence a change in posture, it can often be invisible. Not many people know much about AS, despite the fact that it is not a rare condition. It also is a form of arthritis that affects young people. This lack of understanding by the general public can make it incredibly challenging for anyone with the condition to feel understood. This is further complicated by the fact that often a person with AS will have good and bad days. When it's good, they might try to bring some normality back into their life. When it's bad they might feel overwhelmed by their pain, fatigue and inability to do the things they had planned. These good and bad days are often difficult for the outsider to understand, leaving the sufferer to feel on occasion like a fraud. Some people get no respite from their pain and fatigue. All of this can have a significant impact on the sufferer's well-being. The psychological impact of AS is probably as significant as the burden of pain and fatigue.
And let me tell you this other shocking fact. The current delay in the diagnosis of ankylosing spondylitis is between 8 and 11 years! I will leave you to imagine what unnecessary suffering and possible permanent damage that a person might endure during this delay...
So, if you've got time, read on and find out a bit more about this difficult to pronounce condition (go on ... for World AS Day). And, I guess something we should all bear in mind is that often what's presented on the surface might not represent the true picture. A person in pain is not always easy to spot. Next time a young person on the Tube fails to give up his/her seat for an elderly person I hope I might not be so quick to judge...
1. Ankylosing spondylitis is pronounced an-ki-low-sing spon-de-lie-tis and is called AS for short.
2. AS is a painful, progressive form of inflammatory arthritis. It mainly affects the spine but can also affect other joints, tendons and ligaments.
3. Ankylosing means fusing together. Spondylitis means inflammation of the vertebrae. Both words come from the Greek language. Ankylosing spondylitis describes the condition where some or all of the joints and bones of the spine fuse together. Other areas such as the eyes, bowel, lungs and heart can also sometimes be involved with AS.
4. AS affects an estimated 200,000 in the UK -- that's twice the number who have Parkinson's Disease or multiple sclerosis.
5. Research is still ongoing into the genetics of AS but researchers believe that up to 20 different genes must be involved.
6. Symptoms usually begin in early adult life, with the average age of diagnosis being 24.
7. There is currently no cure for AS. It is managed by a combination of pain relief and stretching exercises.
8. AS, especially in its early stages, can be an invisible condition. People with AS are often battling on a daily basis against pain, stiffness and fatigue. This can lead to feelings of isolation, particularly just after diagnosis.
9. As well as the inevitable pain of the disease, AS often generates feelings of frustration and fear. To help them adjust to their diagnosis it is important that they have the support and encouragement of family, friends and work colleagues.
10. Some common problems for people with include: pain and stiffness in the mornings make it hard to get going; sitting in one place can lead to pain and stiffness and not having the same amount of energy or stamina and getting fatigued easily.
A big week for NASS - so why am I disappointed?
23 April 2013
Sunday was a great day (to a point). It started well as I got caught up with the elation of the London Marathon. I've always been emotional watching this event, having so much admiration for the runners. But of course since starting this job I've had two years' worth of extra excitement cheering on those very special people running for NASS. During the afternoon I started to get ready for the British Society for Rheumatology (BSR) conference - it's a big week at the conference for NASS.
The day ended with me in A&E, me in lots of pain, my lower left leg severely swollen. I spent most of the day on Monday in orthopaedics in a great deal of discomfort and was ultimately advised that I needed to spend the next week resting (not that my body was giving me much choice anyway). I was so upset, totally gutted to not be able to make the conference. Also, I hate it when my family have to do everything for me; I feel such a burden.
This week at the BSR conference NASS will be launching its Meeting in a Box initiative. A CD rom package which provides all the materials needed to deliver a back pain seminar to GPs, Osteopaths, Chiropractors; thus providing education on recognising IBP (inflammatory back pain) and suspected ankylosing spondylitis. Last year a basic member survey of 10% of NASS members told us how important GP education was to you. We know that there is currently an unacceptable 8-11 year delay in diagnosis. We've been running successful back pain seminars in the last few months. This initiative is another fantastic approach to GP education, ensuring that the IBP message is spread far and wide. NASS is a small charity with a big reach. It is SO exciting and I am extremely proud of what we've achieved in partnership with Abbvie and thanks to the hard work of Dr Raj Sengupta, Dr Karl Gaffney, Physiotherapist Claire Harris and the NASS and Abbvie teams.
In addition to our Meeting in A Box launch I was scheduled to speak on Musculoskeletal Clinical Networks on behalf of the Arthritis and Musculoskeletal Alliance (ARMA) and had many meetings with colleagues in the diary for the duration of the event. I can't think of a more important week, work-wise in my diary this year.
So, my body let me down and consequently I have let others down. All my colleagues have been incredibly supportive but I am gutted not to be part of it all. I am incredibly lucky however to have such a fantastic team who will carry on spectacularly regardless.
Now, I'm not feeling sorry for myself (well I might be a bit), crikey there are plenty worse off than me. But, I do feel low, very disappointed.
When I left the hospital yesterday I was on crutches and instantly people recognised ‘there's a women in pain'. But people with AS, in pain often don't look any different - and they don't have equipment to show as ‘proof' of their pain.
I am disappointed to be missing an important conference. I feel I have let people down. People with AS often feel such disappointment - it might be a family party they cannot attend, a walk to the park with their children they cannot manage. This is why we should not be surprised that the psychological impact of a condition like AS is great. This week I am frustrated because my body has dictated what I will not be doing, regardless of what I want.
NASS will work hard to ensure that there is a greater understanding of the (often) invisible nature of AS and the psychological impact of having this long-term condition that calls the shots from time to time.
My older blog pieces (from July 2012) have now moved to the Members' area of the website if anyone would like to read them.