An Interview with Debbie Cook – Director of NASS

Debbie Cook is the director of the National Ankylosing Spondylitis Society (NASS). On the 23rd of June NASS held it’s annual conference; the first in which Debbie has been responsible for organising. Following its huge success I caught up with Debbie to find out a little more about the woman behind the organisation.

Firstly I’d like to congratulate you, and the whole NASS team for a very successful conference at the weekend. You must be pleased how it turned out, and I would imagine immensely proud? 

Thank you! I am so proud of how the conference went last weekend.  I aimed to make a cultural transformation at NASS when I arrived and that required the team to make huge changes in how they worked.  They responded so positively and have worked very differently this year and also very hard. I saw the conference as a culmination, ‘the showcase’ of their hard work, dedication and commitment, if you like. We’ve had some fabulous feedback on the conference so far, and as you know, I am sooo committed to listening to our members and aiming to deliver what they want.  We can’t always do everything, but NASS is listening.

What were your personal highlights of the conference? What did you enjoy the most? (Note: the correct answer is finally meeting me in person) 😀

Well of course Ricky it made my whole year to meet you in person! Seriously though I can honestly say that the highlight of the conference for me was getting to meet so many NASS members (although I would have liked more time to chat). I want members to feel personally connected to NASS and the best way to ensure this is to meet and chat with members face-to-face.  Of course I can’t meet all 6300 but believe me, I would if I could.  I love my branch visits for this very reason.  I also enjoyed seeing everyone chatting, making new friends and contacts.  There is so much support for one another that can be facilitated at events like these through continued contact on social media platforms. Of course we have the NASS forum which aims to connect people but again there’s nothing to replace meeting face-to-face.  And hey, you’ve met me now so you can see I’m a face-o-face person!

That covers the best bits, but can you tell us what you would have changed? Without giving away any spoilers for next years conference of course.

Well first of all if you promise to keep it a secret – I have already booked Dr Raj Sengupta to speak next year. His round table discussion went down so well. I’ve heard Raj speak before and he’s great. Next year I’d like to see a longer session going back to basics, helping members to understand their AS more.  I’ also like to leave a lot more time for questions and a lot more time for delegates to socialise and make those all-important connections. The programme was fab this year, we had some amazing speakers who we were privileged to get but on reflection, maybe we tried to cram too much in. Next year I’d also like to dedicate more time specifically to young people.  But, going back to my highlights (I’m not one for sticking to order! :.)), it was great to see so many young people at the conference this year, I was truly delighted by this.  NASS is a vibrant, dynamic organisation and we want all ages on board. As you know, I joined NASS in 1997, but I only kept my membership up for a year. I was put off my some of the negative images I saw and also for this reason I disengaged with my local branch.  Looking back, that was a huge mistake made by me; I should have stuck with both. BUT this ‘mistake’ has made me determined to ensure that younger people do want to be a part and stay a part of all things NASS.

You have achieved so much in what is arguably NASS’s best year to date. Next year looks like it could be even better; but for those that aren’t aware, what are NASS’s plans for next year? 

First of all, thank you for the positive comments about my first year. As I say I work with a great team and we are privileged to have some great trustees and medical advisors on board. I hope we will improve year on year. My personal ambition is to continue to work hard to raise the profile and level of understanding about AS within the general public.  We’ve had lots of media attention in the last 12 months but there is much, much more to do.  I won’t rest until AS is understood as widely as MS.

Next year will see even more GP awareness with a particular project focussed on educating GP trainees.  We will also be auditing all rheumatology units against the recommendations in Looking Ahead; Best practice for the care of people with AS.  Social media and better engagement with young people will also be a big focus.  We will be running a young people’s focus group later in the year for which we’d be grateful of participants! (Do you allow advertising on your blog? :.)) . Our branch development 3-year project will continue and more branch development conferences are scheduled. NASS will be out and about covering the UK in one way or another.  We also plan to try to launch new branches in Northern Ireland and have just ‘dipped our toes’ into this new piece of work. Later this year I also want to launch a new initiative aimed at developing a ‘wish list’ for research into ankylosing spondylitis.  We will be engaging with our membership in a number of ways to canvass opinion but we know that research is dear to your hearts.  We will of course, continue to campaign for better care. That’s just a snap shot.  We are a team of 5.5. As I said on Saturday, I think sometimes people think we are a much larger organisation.  That’s great if it’s a reflection of our ‘presence’ in the community.  We work hard to be greater than the sum of our parts!

I know being involved in social media was something you were keen for NASS to do, and you also now post in the Director’s Blog. Do you consider yourself to be a “blogger” yet?

Absolutely not!  I am still amazed that people actually read my blog!  I try to write once a week.  I see it as a very important part of my role.  NASS is your organisation and members of the AS community need to be informed about what I’m up to on their behalf. My blog also gives me a little window to broadcast little snippets of my home life; my wonderful children and my lovely husband who is an enormous support to me. I think my friends even read it sometimes just to see if they get a quiet mention! What you see is what you get with me and I hope this comes across in my ramblings.

Something I have always wanted to ask you, and I’m sure many others do too. What do you get up to when your not working? Any unusual hobbies or interests?

Do you know what? I think that you already know me quite well through my blog. I don’t have much time for hobbies.  I travel a fair bit with the job and so my family time is really important to me.  I spend a lot of time driving my children around! I love animals. I have a gorgeous Bernese Mountain dog whom you’ve heard about; Bisto.  We have 7 chickens; Dumbledore, Bellatrix, Rock Chick, Madge, Mabel, Sage and Tikka. Daisy has two guinea pigs, Coco and Fudge, but I spoil them when she forgets to! I am just trying to persuade Steve to build a pond so we can have a few ducks (and I usually get my own way so watch this space!). So, to share with you a little extra, I’m an 80s girl and this year for the second time I will be pitching up with hubbie and a group of very special friends for 4 days of sheer 80s indulgence at the Rewind festival.  Of course, before you ask, there is absolutely no way that I am prepared to share last year’s photos and I will not be sharing this year’s either!

So how are the new additions to the Cook family doing? Are Dumbledore, Bellatrix and Rock Chick getting along with the rest of the brood?

Do you know what? Mabel was a bit of a bully to start with. (I mentioned this to my granny, her 84 year old name sake this morning and she was keen to point out that she is nothing like that, although to be honest I wouldn’t want to upset her!).  I think they are settling down. No eggs from the girls yet but its early days.  What I should tell you though is that Sage has been sitting on 6 eggs for 2 weeks now.  Wouldn’t it be lovely if we could report new chicks? We bred Mabel ourselves; she was so cute when she sat in the palm of my hand.  She had a yellow Mohican but that’s disappeared now.

And finally, being a Director of a organisation like NASS needs certain attributes, and a sharp mind. So lets test that shall we? Let us see if you can work out my little problem? 🙂

Last week I travelled from London to Leeds, which is a distance of 174 miles. I started at 9.15am and completed the journey with an average speed of 40 miles per hour.

On the way back, in the evening, I travelled exactly the same route, starting at 5.15pm. The traffic was light and I completed the journey with an average speed of 60 miles per hour. What was the overall average speed for round trip?

Hint: The answer is not 50 mph.

Feel free to show your working 😉

OMG Ricky. That sort of question makes me start to shake.  Oh, is that the phone ringing? Must dash. VERY important NASS business to attend to…………

Debbie writes a Directors Blog as part of her role within NASS. To follow what the organisation is up to, as well as the antics of the NASS team, you can follow them here. She can also be found on twitter and facebook along with the rest of the NASS team.

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