The NRAS Blog

Tea and Empathy

2012-01-27T10:23:00.000Z

All through my life, tea has been a constant. We Irish love our tea and that’s for sure. The United Kingdom Tea Council confirms the Republic of Ireland is the largest per capita tea drinking nation. It is consumed on high days and holidays, at happy times and for comfort in sad times. A cup of tea starts a task, progresses a task and finishes a task. As I sit here with my laptop, there is a cup of tea within my reach to help me along my way.

So, with a background steeped in tea, it seems strange that I should be one month short of my fiftieth birthday before I came face to face with that wonderful accoutrement - the tea urn. It was on 22nd September 2010 and in Westacott Business Park of all places. I walked into the NRAS office as a volunteer and Clare greeted me in that most comforting way, ‘first things first, would you like a cup of tea?’

It was from that moment also, that I began to gain some real understanding of Rheumatoid Arthritis and the impact it has on people’s lives. I learned it strikes both young and old, for no obvious reason, and that sadly, there is no cure. As time progressed, I appreciated and admired the vital work done by each and every member of the NRAS team. Whilst helping out in Volunteer Network, I became aware of the numerous group meetings up and down the United Kingdom, where people affected by RA met to support each other and spread the word about the help available at NRAS and beyond.

Rheumatoid Arthritis is a viciously debilitating disease but my goodness, from what I have seen, it is borne with much fortitude and courage. The NRAS team, led by the inspirational Ailsa, works tirelessly to improve the life of Rheumatoid Arthritis sufferers and their families and I feel honoured to have been involved in some small way during the past eighteen months.

My own personal journey requires me now to stay closer to home and family and I leave the Membership Department on 31st January. But I will think of you often; my colleagues in the NRAS team and the wonderful members and their families.

And please……keep that tea urn switched on. I would love to pop in for a cuppa and a spot of voluntary work from time to time. Thank you all for having me – it has been a pleasure to know and work with you!

Now then, surely it’s time for a cup of tea?

Mary x
Membership Supervisor

Fun and a little bit too much running.... Sarah Drew

2012-01-20T12:32:00.000Z

I began working as a data analyst intern for NRAS. My role is to evaluate the services at the charity to ensure that they are having the best possible impact on the people who use them. As a result I’ve been conducting focus groups, telephone interviews and if you’ve been sent any questionnaires it’s probably a fair guess that I’m not far away!

As a result I’ve been spoilt by the number of opportunities I’ve had to meet people with rheumatoid arthritis and their families. I’m always surprised by how welcoming everyone is and how willing they are to give up their time to help. As well as being insightful it’s also been a lot of fun – we’ve shared more than a few mince pies and giggles together. A particular highlight was trying out the holistic therapy technique of ‘cupping’ on the lucky lady who happened to be sat near me at a regional group meeting. I’ve pleased to say she emerged unscathed!

The remainder of this year looks no less exciting both for me and for NRAS. Against my better judgement I’ve already been coaxed into running the NRAS 10km with a number of my colleagues for the 2012 NRAS Games. I’m also very concerned that it’s only a matter of time before I’m persuaded to jump out of a plane attached to an instructor and parachute. All in the name of charity... I’m looking forward to meeting even more of you in 2012 and wish you all the best.

Sarah Drew

Data Analyst and Research Intern

Sam's News......

2012-01-06T17:30:00.000Z

I started working for NRAS at the end of August and my initiation ceremony was to be taken to Swindon to see off some Men in Tights (literally). Well, what an initiation ceremony that was! I couldn’t have asked for a better one than to see a group of very fit men in Lycra touring around the West on their bicycles! It was a great insight to fundraising and to see how dedicated people can be. Was a fun morning!

Having recovered from that, I settled into my new role as Executive Administrator which I am thoroughly enjoying. My role is varied in that I help out with the fab and fun fundraising team and I also have the opportunity of talking to members, new members, volunteers, and also newly diagnosed patients. It is especially rewarding to help direct newly diagnosed patients to our invaluable Helpline and to hear how much better they feel after having done so.

Since working at NRAS, I am shocked as to how many people I now know who have this disease but it is, again, rewarding to be able to tell them about NRAS and the help they are able to receive and some of the knowledge I have gleaned so far. I learn something new every day and I am looking forward to learning a lot more.

We have an exciting year ahead of us as the NRAS Games has arrived! Please make a joint effort for NRAS in 2012 by taking part in the NRAS Games to celebrate this special year in sport. Whether it be running, cycling, swimming, walking or organising/taking part in a team event such as an office games or fun sports day, holding a Tea for 12 party or taking part in our online quiz, any effort to help raise awareness and funds is really important to us. I look forward to hearing from you!

Sam Beaton

Diaries, Cakes and a Worn Out Keyboard! by Deborah Flitter

2011-12-23T12:29:00.000Z

As we approach the end of 2011 and as the latest member of staff to join NRAS as Ailsa’s PA, it is my great pleasure to be able to close the year in this way.

What a year it’s been...and I’ve only been part of the team since October!

First I thought “they eat a lot of cake here”...well we do eat a fair amount but it actually turns out that a there were quite a few October birthdays so the cake consumption did drop off fairly quickly when November arrived.

Luckily the excesses of cake didn’t have an impact on my waistline and it was with relief that I managed to climb into my “I’m going somewhere important” suit in order to attend the very prestigious Healthcare Champions event at The Speakers Rooms at The House of Commons, and as I had only been working with the team for two weeks when this took place, I was beginning to get the feeling I must be part of something very special.

There wasn’t much opportunity to get to know Ailsa in those first two weeks, as the emphasis was on final preparations for the HC event and I was very much involved. I learned during that time how NRAS will go the extra mile to ensure its members and associated health professionals feel valued, and how this attitude is common to every aspect of the charity, no wonder NRAS staff need cake, because quite honestly they don’t stop for anything else!

With the success of the HC event firmly behind us the time had come to concentrate on working out why the letters on Ailsa’s keyboard had faded, and why every time the words ‘Ailsa’s diary’ were mentioned, certain members of the team shared knowing looks and slowly backed off shaking their heads in amusement....oh and if I was EVER going to be able to actually SEE Ailsa behind a groaning pile of papers which sat ominously between us....something told me this was not going to be simple!

Now I know you’re wanting me to say that in the last few weeks I’ve sorted the piles into beautiful files, kidnapped the (very full) diary and painted the letters back on the keyboard...! Between you and me this is no easy task due to the amount of work Ailsa takes on behalf of NRAS, the amount of hours she puts in tirelessly representing its members, the amount of reading she has to do and the amount of information she keeps inside her head that seems to spill out through her fingers as she frantically types reams of communication on that keyboard.

I’m not sure that I will ever manage to reign in Ailsa and neither would I want to because without her tireless passion for NRAS it wouldn’t be where it is today, but I think I am making a difference and I’m so looking forward to the challenge of working with her and the rest of the NRAS team in 2012.

On behalf of Ailsa and the team I hope you all have a wonderful Christmas and wish you much luck in the coming year....oh and more cake!...but for now I’m off to have one of Ailsa’s gorgeous mince pies...and yes, she even finds the time to make those herself!

Deborah

Farewell Blog

2011-12-15T17:34:00.000Z

Hello All

I’m sad to say this will be my farewell blog for NRAS as I’m leaving this Friday (16^th December) to pursue a career in IT.

The past 2 years have been amazing and not only have I’ve learnt so much from my colleagues & talking to various people who work with NRAS but I’ve also developed as an individual and for that, I’m grateful to NRAS.

The commitment and dedication I see from members to health professionals and even my own colleagues is overwhelming. NRAS wouldn’t be what it is today without all this, so well done to each and everyone of you.

I have attended various events over the 2 years & I was delighted and honoured to be part of the 10^th Birthday Celebration Lunch held in Warwick, in the summer. I spent my time clicking away on the camera, but nevertheless enjoyed it! I’ve also shot the NRAS 10k run, the NRAS bowling evening amongst others and most recently & my final event, the NRAS Christmas Concert. We were joined by the RT Hon Theresa May MP & the Mayor of Windsor & Maidenhead, Cllr Asghar Majeed with local schools performing including our very own ‘NRAS Ronnettes!’. I am delighted to say we raised £600 from the evening and received positive feedback!

I have no doubt NRAS will go from strength to strength & I will actually still continue to work at NRAS on a voluntary basis, working hard to maintain NRAS’ relationship with a local restaurant, Asian Fusion. I will also be offering my help at events and to keep tabs (& maybe have some cake!).

I’m starting to get all teary-eyed & it’s only Wednesday at the time of writing this! So I will leave you all with a few final words. I will leave with fond memories of NRAS from the picnic to the football banter & lots of cake eating to attending the Co-ordinators conference & meeting some of you. I wish NRAS staff, members & supporters all the best for the future and thank you all, for your support.

I wish you all a very Merry Christmas & Happy New Year.

This isn’t goodbye, it’s au revoir!

Tameena

Seasonal eating

2011-12-05T11:51:00.000Z

Hi everyone!

I just don’t know where the year has gone at the moment! I know that diet isn’t normally something that is associated with December, but I have noticed that it is a topic that comes up fairly often on HealthUnlocked, and on the off-chance that some of you, like me, are anticipating putting on a few pounds at Christmas I thought you might be interested in some pre-seasonal dieting information.

The word diet conjures up different things to different people. On the one hand, diet is about what you eat and how this can improve your overall health. On a more specific level, people talk about going on a diet because they want to lose weight. Of course, the best way of doing both is to change your eating habits so that you are eating a healthy, balanced diet. The weight loss may be slower than on some ‘fad’ diets, but it will be better for you, and may help you to keep the weight off.

The main advice on diet for people with RA is to have a healthy, balanced diet, the same as it would be for anyone in the general population, and of course keeping your weight at a reasonable level puts less strain on your joints. Exercise can help with weight loss, as well as having other benefits, like keeping your muscles strong. The level of exercise you are able to do will obviously vary, but here are some useful exercise links:

http://www.nras.org.uk/about_rheumatoid_arthritis/living_with_rheumatoid_arthritis/lifestyle/exercise/exercise_rheumatoid_arthritis.aspx

http://www.arthritisresearchuk.org/Files/2282-Keep-moving-poster.pdf

You will often hear of ‘exclusion’ diets for people with RA, where you are advised to cut one thing or another out of your diet. You should always be careful when doing this that your diet is still balanced, and that you are not cutting out important vitamins and nutrients altogether. It is also very important to note that while some people’s RA does not seem to be affected by what they eat, for those that are affected, the foods that they need to cut out are very individual. It is not a case of: “All people with RA must cut out X,Y and Z” from their diet. For some it will be ‘X’, for some ‘Y’ and for some it might be ‘F’. So, what works for one person may not work for you. You could find out if any foods are irritating your condition by keeping a food diary for a while, where you monitor what you eat and how you feel each day. I also think the following information on diets might be helpful:

This is our general article about diet and RA:

http://www.nras.org.uk/about_rheumatoid_arthritis/living_with_rheumatoid_arthritis/lifestyle/diet_alternative_therapies/diet_rheumatoid_arthritis.aspx

Here is a specific ‘festive’ article to help you over the Christmas period:

http://www.nras.org.uk/about_rheumatoid_arthritis/living_with_rheumatoid_arthritis/lifestyle/diet_alternative_therapies/seasonal_eating.aspx

Wishing you a happy advent period!

Victoria Backhurst

Helpline & Information Coordinator

Maimie's Blog - Festive Cookie Cutter of Great Britain

2011-11-25T10:37:00.000Z

Interestingly, this cookie cutter is missing Northern Ireland and we are planning to add NI to our arsenal next year . This means I’ll need a new shape for December 2012’s gingerbread-making factory that my kitchen usually becomes (not always with gloriously successful results: always edible, not always beautiful).

The cutter’s shape is symbolic of my improving understanding of UK geography since joining NRAS in mid September. As Volunteer Network Supervisor I’m visiting many of you around the country both in established NRAS groups, recently formed group as well as to help encourage new ones. So far I’ve been to Salisbury, Poole, Oldham, Redditch, Tunbridge Wells and will shortly be heading to St Helen’s. All places that are entirely new to me so it’s exciting and also great to meet you face to face. I was told December’s pace would be a little slower however it’s not looking that way! My upcoming road trips will include Oldham again - to meet with the people who wish to make that group happen – as well as Brighton, Dorchester and Sidcup. I have no doubt that other places will materialize for visitations before this year ends up around the Christmas tree.

In a wild expression of optimism, I have set myself the task of getting Christmas gifts purchased before the end of November. I made the mistake of saying this out loud to my family who are observing my progress with quiet doubt. The idea seemed like a good one in October but as the end of the November looms it would be truthful to say that an element of frenzy is creeping in. Wish me luck, as I wish you too, along with some sanity in the shopping operation and may any gingerbread you encounter be both good looking as well as tasty!

Maimie Hume

My first 3 months back at NRAS

2011-11-11T10:39:00.002Z

Hello there,

I’m Sarah Kate (which has caused lots of confusion in the office with two Sarah’s starting in the same week!) and some of you may remember me from a little while ago when I worked with Gail in the Membership team. Well, lots has happened since then, I have visited a total of 9 countries (I refer to it as travelling but some like to describe it as gallivanting!), hiked to Macchu Pichu, sampled lots of lovely wine in Argentina and visited the Rocky Mountains in Canada. But I have now been back at NRAS for 3 months, and it feels like I have never been away!

I am thoroughly enjoying my new role as Helpline Co-ordinator. It was a little daunting at first as we get asked such a wide variety of queries here on the helpline and I am continuing to learn new things every day. So please do bear with me if I feel the need to go and pick the brains of my more experienced colleagues in order to answer your questions to the best of my ability.

I have also had the opportunity to do my fair share of gallivanting (ahem I mean travelling) here at NRAS. In the short time I have been back I have been into London on various training courses, and to attend an educational day for rheumatology specialist nurses, up to Oldham to help host a very successful group launch meeting, and most recently up to the Houses of Parliament for the NRAS Healthcare Champions Award ceremony. This was a huge success and a very exciting night, in such spectacular surroundings. I have also had the great opportunity to spend a day at the Wexham Park Hospital rheumatology clinic, where I was fortunate enough to sit in on a number of consultations, watch a joint injection and grill the specialist nurses about all things RA related. It was a very valuable learning experience.

I am off into London again on Monday to attend the Annual Voluntary Sector Seminar at the British Pain Society, which should be a very interesting day. It’s a wonder I’m ever in the office long enough to take any helpline calls!

I hope you all have a lovely weekend.

Take care,

Sarah Kate

Ever expanding waistlines! by Clare Jacklin

2011-11-04T17:37:00.002Z

Why might you ask would this be the title of my blog....well we have suddenly lots of new people in the office which always calls for cake and we also seem to have recently had a flurry of birthdays in the office which of course calls for cake and I seem to spend a great deal of time in my car which of course calls for Jaffa Cakes! Hence the ever expanding waistline!

Volunteer Network team up sticks and moved down the corridor to the other office to be nearer our colleagues in Helpline which is great but of course this meant being nearer the cake supply, which is not so good! We now have a new member of our team Maimie Hume who joined us on 13th September and has already been to Salisbury, Oldham and Redditch so we’ve definitely dropped her in at the deep end however I am very glad to say she is doing a fantastic job and has sunk beneath the waves of emails and paper I keep sending her way.

Since I last blogged, I’ve been promoted to Director of External Affairs (this is your opportunity to be impressed and say “OOOOH”) however this role brings with it a great deal more work and responsibilities (your opportunity to be sympathetic and say “AAHHH”). So Tracey (newly promoted Director of Development) seem to spend a great deal of time in meetings and flitting here there and everywhere representing NRAS which does enable us to shoulder some of the pressures from Ailsa and I must admit is challenging but rewarding.

This week has been yet another typical week with lots going on which I thought would be interesting for you to have a peek inside a “week in the life of NRAS”....
Monday- Scary realisation that the deadline for the winter NRAS magazine is looming; booked the NRAS Christmas meal; phew only 45 emails today to deal with; must read 30 page document outlining a project.
Tuesday- 7am start to drive to Redditch to visit rheumatology team at Alexandra Hospital; journey back in time for editorial meeting on the magazine before final preparations for Health Care Champions event in the Speakers State Apartments in the Palace of Westminster (other opportunity to say “OOOOH”) It was fantastic to celebrate the exemplary work of so many excellent health care individuals and teams from across the UK. Wonderful to have our patron Teresa May, Home Secretary and MP there to present the prizes.
Wednesday – More emails!! Group issues ironed out; teleconference regarding the next members’ survey then off to Stevenage for an evening patient meeting, phew back home before 11pm!
Thursday - 2 teleconferences before a meeting to discuss patient education plans
Friday – Thank Crunchie it’s Friday but how come my to do list is longer not shorter than it was on Monday – at least we managed to find organise some members to talk to the media on early diagnosis, some more to do media work on work issues and one to visit a pharmaceutical company in December to give the patient’s perspective at a meeting not to mention prepare to visit a Asian Community Health Seminar on Sunday...yes Sunday!
If anyone can invent something to give me more hours in a day I’d really be grateful! HA. Please be assured everyone here at NRAS is working flat out for you and for all living with RA and without your support we wouldn’t be able to do all we do so a big thank you to all our NRAS Members and if you’re not currently an NRAS Member please, please consider becoming one, as we NEED you just as much as YOU need NRAS. www.nras.org.uk/help_for_yo...

Clare

The first of the newbie bloggers

2011-10-28T17:08:00.000+01:00

Hi All,

This is my first proper blog and although I am technically a newbie, I have been at NRAS a bit longer than some of the other newbies who I’m sure you will hear from in due course!

I’ve been with NRAS for two months already and how quickly it has flown by! I took over the role of Online & Social Media Coordinator at the end of August, very excited to be joining the team. Within a couple of weeks I was already cheering our runners on at the Great North Run with Val and Oli.
The weekend involved a mammoth journey in the slowest hire car in motoring history, ghost stories (and thereafter the fear of sleeping in the old halls at Newcastle University) and some rain, sun, rain and more sun on the day of the run. At the end of the day we were exhausted and hadn’t even taken part in the race. Well done again to all those who took part and good luck to those running in the Great South Run this Sunday!

Since then I’ve been busy with the website, database and building up our followers on Twitter and Facebook. We had our official 10th Birthday last Tuesday and all enjoyed some cake (that’s not much of a novelty here – cake mad I tell you).
The Christmas merchandise on the eBay shop has been flying off the virtual shelves so make sure you get your order in soon! We have Christmas cards, gift wrap and money wallets this year. You can visit the shop here: stores.ebay.co.uk/NRAS-Char...;_fsub=1&_sid=1045525980&_trksid=p4634.c0.m322.
Alternatively you can call Val on 01628 501547 or email at val@nras.org.uk to place your order or to request an order form.

To continue the Christmas theme (I know it’s early!), we are gearing up for the NRAS Christmas Concert on Friday 9th December. It will be held at All Saints Church, Maidenhead and tickets are £10 (£6 for Concessions). It looks to be a great night with two local schools performing and also a cheeky performance by NRAS’ well-reviewed Clare Jacklin (she is currently rehearsing to play the wicked witch in a production of Snow White). For tickets, please call 01628 501547 or email val@nras.org.uk.

So apart from the Christmas Concert, Fundraising is quietening down and after a meeting about next year’s events, plans are coming together. I can reveal that we will be embracing the Olympic theme with the aim to encourage all our NRAS supporters to do what exercise they can and raise money for NRAS...watch this space!

And as I’m on the subject of exercise, I should mention that I am famously a sportphobe...always the last to be picked for games at school and generally clumsy in any form of exercise. Yet today came the news that Oli and I have both won places to run in The National Lottery Olympic Park Run! I screamed with excitement and fear in equal measure as I read the confirmation email. Luckily the run is only 5 miles and at the end of March so I might survive! I think with my NRAS t-shirt on and a few jogs round the block beforehand I will leave behind the flashbacks of former school sport experiences - cross country running in the snow, being sent off in Netball for being disorientated (of all things) and even walking/fainting into a folded trampoline (I had a small injury and felt queasy..) only to regain consciousness with my skirt up and the whole P.E. class staring at the giant bruise on my head. Must.let.it.go.

So exciting things to come! Keep an eye out for our next year’s events and see what you can do to get involved. I look after Facebook and Twitter so if you have any news to share, email me at ruth@nras.org.uk.

Until next time!

Ruth
Online & Social Media Coordinator

Gearing up for Christmas!

2011-10-14T13:01:00.002+01:00

I can’t believe we are now well into October and the weather is still so lovely. After such a horrible summer its about time we had some good weather! I have bought a few Christmas presents which I am sure I will forget I have and will buy again! When I asked my 16 year old son what he would like for Christmas he said ‘a car’!

Fundraising is now gearing up for the Christmas season with our Christmas cards and wrapping paper flying out the door. If you would like to order any cards please visit our eBay shop at stores.ebay.co.uk/NRAS-Char... or alternatively contact me on 01628 501547.

Our Christmas Concert this year will be on the 9th December at All Saints Church in Maidenhead. Details are now on our website - www.nras.org.uk/ChristmasCo...

On the 18th September Ailsa, our Chief Executive, took to the roads in her wheelchair to take part in the Great North Run in Newcastle. She had a team of 6 pushers who worked together to complete the run in 2.59 hrs – a great time! In total we had 22 runners taking part in the race and between them so far they have raised a fantastic £12,000. Thank you to everyone who trained so hard for the event and raised not only awareness but much needed funds. If you would like to take part in next year’s race which is on the 16th September do get in touch and I will reserve you a place – they go very quickly so don’t delay!

Last Sunday 10 of our supporters took part in the Royal Parks Half Marathon in London. It was an early start with runners arriving at Hyde Park by about 8.30 am. I set off from home with my ever supportive husband with me to offer encouragement to our runners. We left home in the rain which stopped by the time we arrived at Hyde Park and the sun came out (much to our relief). We met with some of our runners before the race, 3 runners were completing their ‘Marathon in a Month’ having taken part in the Great North Run. We met up with Darren, Dave and Laura at the end of the half marathon and the relief they felt having completed their challenge was very apparent!

So far almost £4,000 has been raised by our runners so well done to everyone who took part. If you would like to take part in next year’s race please get in touch and I will reserve you a place.

On Tuesday 18th we will be celebrating our official 10th birthday. So many of you have supported us through this our 10th year. You have held ‘Tea for 10’ parties and Raise It Days, along with lots of your own events. Please do keep up the good work and tell us about your plans for 2012. We are currently putting together our Events Programme for next year so if anyone has an idea for an event they would like us to hold please get in touch.

Full details of our 2012 Events Programme will be on our website very soon. We will have our popular events like the Great North Run, Royal Parks Half Marathon, Hadrian’s Wall Trek and Mount Kilimanjaro Trek, along with some news ones too so once again watch this space - www.nras.org.uk
Why not make Olympic year the year you take on a once in a lifetime challenge in aid of NRAS?

As always I would love to hear from you so please do give me a call on 01628 501547 or send me an email at val@nras.org.uk and let me know what you are planning to do for NRAS. Remember to raise a glass to us on the 18th.

Val

01628 501547
val@nras.org.uk

Having a dizzy blond moment or three …..

2011-10-06T17:46:00.001+01:00

Last week I went to British Society for Paediatric and Adolescent Rheumatology where I was due to speak on the Friday. I took Nicky Kennedy with me who is a retired Rheumatology Nurse Specialist (my Nurse Specialist actually!), from one of the Berkshire hospitals who is volunteering for us one day a week. Nicky has a lot of experience working with children and young people with Juvenile Idiopathic Arthritis and she is helping me and my colleagues with the preliminary work we are doing in this field, preparatory to seeking funding to start the process of setting up a JIA service in the UK.

It was a lovely sunny, crisp morning as we set off up the M40 towards Nottingham. Well, the first thing to happen to burst our happy anticipation of an interesting and interactive 2 days was my very irate husband on the mobile accusing me of having taken his house and office keys with me and demanding that I return them immediately as he had an important teleconference that he was now going to be struggling to make. We were nearly at Junction 6 and our brains went into over-drive. How to deal with the situation without having to go back which would mean we would miss some of the morning sessions at the conference? God must have been smiling on me, because Nicky happens to live near Junction 6 and her husband was at home. He gallantly leapt into his car and met us lurking about in the sunshine on a corner of the road near J.6 and very kindly agreed to drive back to Maidenhead and return the keys to my husband. What a star! We were on our way again within 45 minutes. Whoops no. 1.

Nicky is an excellent navigator (not something I can say about all the NRAS staff!!), and we managed to find the right campus building at Nottingham University, found a disabled parking bay very near the building we wanted and got in just in time to hear the opening presentation. Hurrah. The problems of the missing keys rapidly faded.

After an interesting morning, we were walking to lunch and on passing my car discovered that I had stickers all over it and had received a Campus Police fine! In getting out of the car and sorting out bags, briefcases, deliberating which building it was we needed earlier that morning, I had completely forgotten to display my blue badge! Whoops, no. 2. Fortunately we managed to find one of the very accommodating organizers of the event who, having explained my mistake, managed to get my parking ticket rescinded. Nicky was beginning to look at me the way in which you might regard a troublesome child.

The rest of the day went smoothly until I got to my room and discovered that I had forgotten to pack my hairbrush. Now this might not seem very important, but to one who washes and blow dries her hair every day and bearing in mind I was presenting the next day, this was very cross-making! There was nothing for it, I would have to present with unwashed hair :(.

That evening there was a dinner for all the delegates and speakers and Nicky very much enjoyed seeing some old faces from her early days in JIA when she was one of only two specialist nurses involved in Paediatric Rheumatology care in the UK, and I also had the opportunity to catch up with some of the health professionals I hadn’t seen for while and learn more about the challenges of delivering the standards of care outlined in the new ARMA/BSPAR Standards of Care document published last year.

When Nicky and I returned to the student block that night after the dinner we both got out of the lift, said ‘goodnight’ and went off to our rooms. I couldn’t seem to get the key into lock and after a few moments of fiddling about trying to get into the room, had to get my glasses out to see why the key wouldn’t go into the lock properly. I was just thinking that I would have to go and find someone to help me when Nicky came along the corridor laughing as she had just had the same problem and had realized that we were on the wrong floor! We were both trying to break into other people’s rooms!! Fortunately neither of the occupants of the rooms were there! Well, we then had a fit of the silly giggles and were still laughing about it the next morning. Whoops no. 3.

The following morning the keynote presentation was fascinating and delivered by Dr. Danya Glaser, Consultant in Child and Adolescent Psychiatry from Great Ormond Street, on the subject of ‘Anxiety –related, misconstrued, exaggerated, fabricated or induced illness? Or Medically unexplained symptoms,Or Perplexing Paediatric Presentations? There are many issues in JIA which are different to the adult RA world and we have a lot to learn.

I presented later in the afternoon on ‘Input into Commissioning in RA – Lessons for JIA?’ which seemed to go well. I don’t think this quite made up for all the mishaps however, as Nicky said that she’d think twice about coming away to a conference with me again!

Ailsa

Guest Blog by Health Minister Paul Burstow - World Arthritis Day Webchat on Wednesday 12th October

2011-10-06T10:53:00.002+01:00

WORLD ARTHRITIS DAY: WEBCHAT WITH NRAS AND CSP

I am delighted to be able to take part in this webchat to mark World Arthritis Day. I am most grateful to your Chief Executive, Ailsa Bosworth, and to Phil Gray of the Chartered Society of Physiotherapists, for their invitation.
As you may know, I am the Minister responsible for long term conditions including rheumatoid arthritis. It is my ambition to help people live healthy lives, so that they are at less risk of getting a long term condition in the first place. I also want to ensure that - if and when people need to - they are able to secure prompt access to diagnosis and treatment, and are appropriately supported in learning to live with and to self-manage their condition.

I don’t pretend to be an expert on every condition, though I do understand the devastating impact which rheumatoid arthritis can have on people if it is not identified promptly or managed effectively. Nor do I have any desire to micromanage the professionals at the front line – the doctors, the nurses, the physiotherapists or the self-help groups who directly provide the services to support patients. My job is to help create an environment in which excellent local services can flourish and to ensure that there are no barriers to prevent the provision of high quality care. I am therefore very keen to hear about your experience of living with rheumatoid arthritis and about your access to the services you need.

The webchat will focus on access to physiotherapy, and I am looking forward to seeing the report about this. I fully recognise the key role which physiotherapists play in supporting people with rheumatoid arthritis. There have been a number of specific initiatives in this area, such as:

· Local pilots on self-referral to physiotherapy

· A “service improvement project” showing how service redesign can improve access and outcomes

· Work to enable physiotherapy services and others to collect information about waiting times in order to make improvements

More generally, our programme of NHS reform will ensure that front-line health professionals – Clinical Commissioning Groups – take the lead in designing services that really address local needs and that make the best possible use of the available money.

But it’s not just about the services which the NHS provides. In the end, it is you who have to live with rheumatoid arthritis and you are the experts in how to do so. That is why I believe passionately in the importance of self-care – in enabling individuals to take responsibility for their own health and well-being, and encouraging health professionals to see people not as passive “patients” but as equal partners. Research tells us that when people are in control, it enables them to live longer, to suffer less pain and anxiety, and to be more active and independent. There is a wealth of material available to help you, much of it accessible through the NHS Choices website at www.nhs.uk/selfcare . And there is a national “Self Care Week”, which runs this year from 14-20 November 2011; I encourage you to take an active part and make the most of the vast array of expertise out there.

How to take part in the webchat

If you have a question about access to physiotherapy, or about services for rheumatoid arthritis more generally, please comment here http://webchat.dh.gov.uk/. Alternatively you can tweet us your question, mentioning @dhgovuk and using the hashtag: #raphysio.

You will also be able to ask questions and leave comments live during my webchat on October 12, so don't forget to tune in on the day using the address above.

Chocolate, chocolate and more chocolate!

2011-09-30T17:29:00.002+01:00

Well it would appear that all my previous blogs have been food based, so I thought why break the trend! Currently I’m fighting the need to go over the Christmas sized box of Quality Street and pig out. Did I mention there is a box of Thornton’s? Well they are tasty.

Anyway, to a more important subject and to keep me away from said box.... The final fundraising total for the Great North Run stands at £11,680!! WOW!! An absolutely massive thank you to Ailsa, her team of pushers and all those that ran on behalf of NRAS, you have done a fantastic job. I was at the run this year supporting all our runners and it was a great feeling standing mere metres from the finish line seeing the constant stream of worn-out bodies crossing the line and the atmosphere was phenomenal. It was a brilliant weekend with over 20 runners bearing the NRAS logos, even a gorilla was giving his all for rheumatoid!!!

Do you have 2 minutes?

Could you help me step up a new NRAS Support Group?

NRAS is looking to increase its presence in its local area of Maidenhead by holding an information day promoting NRAS and our services to the local people. We are hoping that from this information day we will create a new group called the Windsor and Maidenhead NRAS Support Group. This group will cater for the estimated 1,000 people living with RA in the Windsor and Maidenhead area. We have applied for the grant via the NatWest Community Force Project and your votes are needed help us secure this funding.

Please follow this link: communityforce.natwest.com/... register and vote for our project. With your help we will increase our presence locally and help more people living with Rheumatoid Arthritis.

So thank you for doing that and apologies for it being a bit of a challenge to vote, I do really appreciate your support. I must also mention the fantastic launch of the Salisbury Group last Wednesday to an enormous crowd of over 100 people. This now gives NRAS 41 active groups operating in your community. If you have never been to one and would like to please give us a call on 01628 823 524 and we can tell you where your nearest group is. Please keep a keen eye on the website for their second meeting as it promises to be a great evening and long lasting group.

Anyway I must dash to catch the last of the sun this evening, might even have a cheeky beer to celebrate the weekend.

Take care everybody and until next time….

Oli
Trust and Grant fundraiser - NRAS

September Madness!

2011-09-23T15:46:00.001+01:00

Hi All

Wow! September has been busy on a business and personal level! On the business side of things, the NRAS office has been manic! We had a huge clearout and shuffle around which was tiring but working out for the best. Ailsa missed all this (lucky thing!) as she went on holiday! So envious! Fundraising have been busy promoting Ailsa’s Great North Run which she completed just this weekend gone and along with her team of pushers done it in a fantastic 3 hours and raised just over £3500!!! It’s not too late to sponsor the team so please visit uk.virginmoneygiving.com/te...

In publications, it’s been a busy month and many apologies if you haven’t yet received your requests; we’re working through them as quickly as we can.

Some of you may have read in my previous blogs that the Mayor of Windsor & Maidenhead, Cllr Asghar Majeed and The Mayoress Naheed Majeed launched a charity initative getting restaurants and charities to work together. Well I am pleased to announce that last week, I paid a visit to a local award winning restaurant, Asian Fusion whom we have now forged a partnership with! I look forward to working with them and bringing in much needed funds and will be organising a launch event to celebrate our partnership.

Now to a personal level, I’ve been away from the office for 7 days for a very exciting reason- my brother got married! All the planning from the beginning of the year came to the fore on Monday 12th September. It was a week long celebration (woo!) but the entire week was an absolute fantastic (& tiring!) occasion and all the shopping trips/days off/running around finally paid off. It was a memorable week and I wish the new couple all the best.

I can’t believe we’re already selling Christmas cards and already buying presents! If you haven't already brought your Christmas cards & presents, please visit the NRAS ebay shop; stores.ebay.co.uk/NRAS-Char...

However you celebrate Christmas, I hope you all have a lovely one!

Best Wishes
Tameena

The Hardest Hit Campaign continues....

2011-09-15T17:16:00.001+01:00

I normally try and say something humorous, or incorporate an interesting piece of trivia, to start off my blog posts, but on this occasion I thought I would just pinch a quote from someone else to pique your interest:

"Disabled people are disproportionately reliant upon benefits and state support and therefore any change that we are talking about will create interest and attract the attention of disabled people and disabled people's organisations. But the very clear objective of the government is that we are supporting disabled people to live more independent lives."

This was in fact the sentiment expressed by the Minister for Disabled People, Maria Miller MP, when she was interviewed by Guardian reporter, Amelia Gentleman, in February this year. For some strange reason, I have an image in my head of Maria perched on the edge of her chair, shouting these words to the interviewer through a megaphone, and dressed up as Lance Corporal Jack Jones from Dad’s Army; her sentences punctured every so often by screeches of “Don’t panic! Don’t panic!”, as civil servants dart about her in chaotic fashion.

Despite my overactive imagination, there must be some kernel of truth, because it is clear the Government’s assurances aren’t working and that is why the grassroots Hardest Hit campaign is now taking to the streets again.

On Saturday (17 September), Liberal Youth is tabling a motion at Liberal Democrat Conference in Birmingham, about the Employment and Support Allowance (ESA), which reflects many of our key concerns around the ESA and the Work Capability Assessment. It calls for:

1. The Government to continue to implement Professor Harrington's recommendations on reforming the WCA as a priority, in addition to an emphasis on:

a) Clearer Assessment criteria and descriptors, to make it more apparent under what circumstances ESA is paid.

b) Ensuring greater accuracy in Assessment, particularly for those with fluctuating conditions.

c) A less stressful Assessment process.

d) People with disabilities getting the support they need.

2. Opposition to an arbitrary time limit on how long claimants can claim contributory ESA.

3. All ESA claimants going to appeal to be given access to adequate representation.

Needless to say, if you are a voting member of the Liberal Democrats and are planning on attending the conference at Birmingham's ICC, please vote in favour of the motion. It has the ability to galvanise the Lib Dem backbenches, and potentially the frontbench too (someone from Clegg's office is on the committee that approved the motion for debate at the conference) in favour of our position.

If you are not a voting Lib Dem you can still help by distributing flyers outside the Lib Dem conference this Saturday ahead of the debate on the motion. Matt Davies, UK Parliamentary Manager at the Royal National Institute for the Blind is organising the leafleting (mobile: 07979 24 62 31; email: matt.davies@rnib.org.uk) and will be attending the conference. He will be bringing 1,000 flyers with him, which will be distributed from 1.30pm onwards.

If a lot of people turn up to help at 1.30pm all the flyers could all be handed out quite quickly. We wouldn't want volunteers to travel a long way to Birmingham and then find there's nothing left for you to do, so you might like to bring along your own flyers to distribute too, and a PDF document of the Hardest Hit flyer can be obtained by emailing me at jamie@nras.org.uk in advance and then printing off your own copies. Please note that Hardest Hit campaign deliberately isn't doing a demonstration at the Lib Dem conference as we want to concentrate on getting our message about the motion across to delegates rather than harassing them.

There are likely to be further direct campaigning opportunities at the Labour and Conservative party conferences and a series of regional marches are planned across England on the 22nd of October. Information about the marches can be found on the Hardest Hit website: www.thehardesthit.wordpress..., where you can also protest online by sending in your words and pictures.

If you are planning on attending any of the Hardest Hit events, make sure you let NRAS know so we can help publicise your activities and provide as much support as we can.

Good luck everyone!

It's All Change at NRAS

2011-09-09T17:23:00.000+01:00

I was looking forward to August and the usually ‘quiet’ month to catch up on all those jobs that you put to one side for when you’ve got time but it has been busier than ever!

As many of you know there have been some staff changes so we have been saying goodbye to Laura, Emma and Charlotte and welcoming Sarah Kate on the helpline, Ruth in Fundraising and Sam as Executive Assistant. We have also been very fortunate in being awarded an intern as part of the Rank Foundation’s Time to Shine programme and have been joined by Sarah (another one!) who will be with us for a year setting up and implementing outcome measurement tools to make sure we are achieving everything we aim to and the impact our work is having on all those who have RA and access our services. She will be visiting some of the NRAS groups during the last quarter of this year so if you meet her please do have a chat to her and give us your views.

At the end of August we also decided to have an office reorganisation – we must be mad! Clare and the Volunteer Network team have now moved in B4 to work next to the Helpline team, which Clare also manages, joining Fundraising and Membership who are also now next to each other to hopefully make it easier for me to manage both teams. We are all getting along very well so far although the eating of cake has doubled which isn’t good for the waistline!

Ailsa, Jamie, Sam and Tameena are now working together in B1 at the other end of the corridor so it keeps us fit going backwards and forwards to visit each other. It has been very quiet for them as Ailsa has been away on a very well deserved holiday in South Africa – her first break for 2 years. I am sure when she comes back next week she will have lots to tell us to make us all very envious.

In Fundraising we have a particularly busy time in the coming weeks with the Great North Run, Royal Parks Half Marathon and the Great South Run all taking place. Ailsa is getting prepared for her push round the Great North Run and don’t forget if you would like to sponsor her you can visit her online page http://uk.virginmoneygiving.com/team/GNRAilsa.

I would just like to thank all of you who have held your Tea for 10 parties this year, raising almost £3,000 between you so far, fantastic! If you haven’t held your party yet, or would like to register and receive a Tea for 10 pack, visit the NRAS website where you can download information and some fun ideas for Autumn tea parties.

Next week is Remember a Charity week, a consortium which NRAS belongs to, to promote the importance of making a Will and the value of leaving a gift to charity in your Will as a way of being able to continue supporting a cause which mattered to you during your lifetime. If you would like to talk to someone about leaving a gift please do email me at tracey@nras.org.uk or call me on 01628 501546 and I will be very happy to talk to you.

Thank you to you all for your ongoing support – we couldn’t do what we do without you!

Here’s to a bright and (hopefully) not too wet Autumn.

Tracey

Director of Development

A step too far and not so funny!

2011-09-02T16:50:00.000+01:00

When I wrote my last blog I was looking forward to meeting lots of new people, and putting faces to those I’ve already had contact with, at the co-ordinators conference and 10th Birthday lunch. That all seems such a long while ago now and yet in another way it doesn’t seem five minutes. Both events went really well, although busy, and I thoroughly enjoyed them. I wish I’d had the opportunity to meet more people at the lunch but time, as always, ran out far too quickly. The conference was also very busy and we had to try and fit everything into one and a half days because we had to get to the birthday lunch. It was lovely to put faces to so many names though and I look forward to the next opportunity to meet more people.

We have a really busy month ahead of us in the Volunteer Network department. There are three launch meetings coming up in September - Maidstone, Salford and Salisbury and another one in October - Oldham. We also have a new member of staff starting mid way through the month. All very exciting but I think you’ll hear more about that another time.

I was promised a quiet month in August where we could catch up on everything and have a good sort out. The month is now over and I’m still waiting for that ‘quiet time’. At least there is no chance of getting bored working here!

It will soon be time to work on another Joint Endeavour, the small newsletter we produce for NRAS volunteers. I’d love to have a few stories to put in it so any volunteers reading this please send me something. If you’re not a volunteer and would like to send something that would be fine too! It doesn’t always have to be something you’re doing with your group or the various fundraising activities you’ve been doing to raise group funds, although they would also be appreciated. Have you got any funny stories to share or acts of kindness? Perhaps you’ve been travelling abroad or had a holiday in the United Kingdom? Photographs and a small article would be interesting for everyone and if you’re concerned at all I could help you write it. The more people contribute, the better it is. It’s for your interest as well. I’ve yet to have too many articles but wouldn’t mind at all if I’m ever in that fortunate position as I could always save it for the next issue!

This is my third blog in the eleven months I’ve been working here and so I decided to look back at the others to see what I’ve written before. I’d been thinking I might find a trigger for something amusing but then found the following section from my first blog, a few weeks after joining NRAS .....

- ‘Already, in my short time of working here, I've felt some benefits I hadn't thought of. When I find myself with aches and pains, or feeling tired and not wanting to get up and rush round to get to work on time, I only have to think of the people that suffer with RA and I realise just how lucky I am. How can I possibly complain about such minor irritants when I'm learning so much about what you may be going through?’ -

.... if only I’d known then what I know now. So, with that in mind I thought I’d tell you what has been happening since and save something amusing for another time. The very things I referred to as ‘minor irritants’ became more and more pronounced. The more I learnt about the symptoms of RA the more I could relate to them. In February this year I suddenly got swelling on my hands. Still in almost total denial I showed them to colleagues at work. That was the point at which I put all the clues together and started the seemingly endless journey for diagnosis and treatment of RA. I’m extremely fortunate to have been working here during this time. I’m surrounded by very knowledgeable people who have encouraged me, nudged me, advised me, helped me and been a tower of strength to me. I still realise how ‘lucky I am’ but not quite in the way I’d referred to before. Like the rest of you, I appreciate this is just the beginning of another chapter, not the end. However, I still think it’s a step too far in my training at NRAS but that just makes me think of my second blog when I suggested that what we think we want isn’t always what we really want. I’ve learnt a lot more but some of that has been through experience instead of theory.

Anyway, I think I’ve probably written more than enough!

I hope I meet some of you again soon and a lot more of you in the near future.

Sue
NRAS Volunteer Network Co-ordinator

Happy Birthday NRAS! Thanks for the Memories!

2011-08-30T11:32:00.000+01:00

Hello there, EmmaN from Membership here.

It’s been a while since I wrote my last blog and it seems as though in the crazy world of NRAS a lot has happened, including the 10th Birthday lunch, which I was really sad to have missed as I would have liked to meet you all, looking at the pictures it looked like you all had an amazing time. I did however get to try a bit of the amazing cake when I got back from my enforced time away on Jury Service!

Unfortunately this will be my last blog for NRAS. I am sad to be leaving, but hopefully will be moving on to pastures bright and new. I will take with me many memories from this year; from meeting a few of you in the office, to travelling to Shropshire to attend a fantastic group, to being involved in setting up work wise workshops and to even taking part in a tandem skydive from 13,000ft, also talking on the phone to many of our amazing Members. The memory that I will take here from the office though is of cake... cake, cake and more cake!!! Oh and don’t forget the chocolate!!! (Mentioning no names ...Katy) I have had an amazing eye opening experience this year and I am sad to leave you all behind but I do wish you all the very best for the future.

I would like to thank Gail, Sally and Katy as without them membership would have been a very dull department. So thank you girlies for your laughter, thoughts and an interesting year!

Looking back over the last year I am quite amazed with just how much Ailsa has achieved in such a short time. When I started here the idea for the Self Management Program was just being formalised with the help of the Expert Patient Programme; and now here we are, in to our 4th pilot scheme, talking to commissioners about making them a permanent fixture in their departments. We have had stalls at both the BSR conference and the European EULAR conferences, both held in London earlier in the year where we met with delegates from all over the world. Ailsa has also been instrumental in setting up the crucial 18 week pathway from GP referral to diagnosis as well as the S-Factor campaign which is aimed at improving early referrals. I am proud to have been a part of this journey with her, as well as all the other members of the team working here at NRAS. I’m sure that you will agree they are amazing!

On another note, I’m happy to report that Members will be receiving your brand new Members’ magazine in the next couple of weeks that Katy has been working hard on since she joined in May. I’m sure you will find that she has done an amazing job, so happy reading and I’m sure she will appreciate your comments very much.

The membership team are going from strength to strength here & we are now nearing four thousand Members. If you have any questions I know that Katy and Gail are ready and waiting to help you. If you need to contact Membership please e-mail membership@nras.org.uk

NRAS has now been around for an amazing ten years, here is to the next ten, which will hopefully be even better than the last!

Happy 10th Birthday NRAS!!!

Good Bye and Good Luck
Emma N
Membership Assistant

Welcome Back to Sarah Kate

2011-08-22T15:39:00.002+01:00

In my last blog I said goodbye to a good friend and colleague, Laura, who left us to take on the huge role of becoming a foster parent. She is doing well, and is grateful to those who commented and offered her some advice, but says that sleep is a thing of the past! However, she is enjoying this new role, and I know will excel at it.

Happily, in this blog I am able to welcome a not-so-new member of staff to our little helpline team. Sarah (pictured) worked for us on a 12 month contract a year ago, and has now successfully applied for the job as helpline co-ordinator, and joined our team earlier this month. It will take her a while to get going, so you may not speak to her on the helpline just yet, or if you do she may need some support from one of her colleagues, but I know she will pick the job up quickly and be up and running in no time.

In addition to our work on the helpline, we all have plenty of other responsibilities, and one of the areas that Sarah will be responsible for is the matching of volunteer calls, so I thought that this would be a good opportunity to tell you a bit about this process, what the volunteers are able to offer and how grateful we are to them.

We get requests for volunteer calls for all sorts of reasons, but probably the most common reason is that someone is starting on a new medication (new to them at least!) and wants to speak to someone that is already on this drug about their experiences. This is very important, as a lot of the information available on the drugs can give you a pretty negative view of them, and often reads as a list of what can go wrong. After reading a long and scary list of potential side-effects it can be hard to remember why you are going to be taking this drug, and to focus on the good that it can do for you. Speaking to a volunteer, who is on the drug, and probably had the same anxieties as you can be really helpful.

Other topics that sometimes come up include talking to someone about a surgical procedure that they have had done, talking to someone that has had the condition for a while, when you are newly diagnosed, and general coping strategies.

We always try to match people with the most suitable volunteer for their query. This will often involve matching you with someone of a similar age, though depending on the nature of the query, we may have 20 volunteers to choose from, or we may just have 1!

Our wonderful telephone support volunteer will then give up some of their free time to talk to you about their experiences, and to listen to your concerns, and offer you the wisdom of their experiences. As is the case with our helpline staff, these volunteers are not medically trained (except incidentally), but can offer you support and the valuable experience of being able to talk to someone that has had personal experience in the area that you wish to talk about. They do an amazing job, as anyone that has had a volunteer call will no doubt testify to!

Look forward to speaking to you on the next blog!

Vicky Backhurst
Helpline & Information Co-ordinator

Farewell!

2011-08-12T14:27:00.002+01:00

Farewell!

Hello all,

I’m sad to say that this will officially be my last blog for NRAS as I am leaving on the 18^th August to start a Beauty Therapy course in September.

I’ve had a great time working for NRAS over the last two years and have learnt so much from not only the team in the office, but also from speaking to our Members and supporters. I’m blown away by the commitment, dedication and passion I see every day from my colleagues to fight this fight against RA, raise awareness, and raise funds to push for better services for patients.

With NRAS going from strength to strength and with the arrival of new staff I am very much excited to see where NRAS goes from here and will be ‘keeping tabs’ to see what’s going on! Our most recent newbies are Sarah Drew, our Data Analyst and Research Intern, and Sarah Ball who has joined the Helpline team as Helpline Coordinator. Some of you may remember Sarah Ball as she used to be our Membership Assistant before Emma Nelson took on the role! We obviously can’t be that bad if she’s come back!

This week, being my last full week before I leave, has been quite an eventful one. We had a staff picnic on Wednesday evening down by the pond in the business park, and were extremely lucky with the weather which allowed us to eat outside on the picnic benches, listen to music playing from Clare’s ‘supersonic audio sound system’ (her car parked next to us with windows down and radio full blast!), play a game of boules which Tameena won followed by a rather competitive game of football and penalty shoot outs! You’ll be relieved to hear that no injuries were sustained by any of the players, even if we were a bit rosy cheeked and puffing out of breath!

It was during this football game that I noticed several members of staff had hidden ‘footy’ talents which were revealed to us, and I was rather impressed with the flair and finesse displayed by some when it came to ‘tackling’ the opposition and scoring a goal! Little did I know that Vicky was a dab hand at being ‘goalie’, Val and Lorraine were forces not to messed with when scoring penalties and who knew Peter could score a goal from the other end of the pitch?! I think the player who deserves a special mention though is Tameena, who, after a dodgy tackle between other players, offered to wade into the pond to retrieve the football! It was great to relax a little with everyone outside of work and enjoy the sun after a long day in the office sat at our desks.

I won’t rabbit on anymore, but I want to take this opportunity to wish the NRAS staff, Members and supporters all the very best for the future and thank you all for everything. I’ve had a great time and will take a lot with me from my ‘NRAS experience’.

So, farewell, goodbye, au revoir, auf wiedersehen, ciao!

Charlotte

Administration Assistant

Hello from the New Gal...

2011-08-10T11:23:00.000+01:00

Greetings bloggers, from the newest girl in the NRAS family. I say this because as of next week I will no longer be the new girl due to some exciting new additions – it is all change here at HQ!

I joined NRAS as the Membership Manager, taking over from Sally Warwick, at the end of May. I have been immersing myself in learning about RA, pharmaceutical companies, drugs and their side effects, the local group network, the Self Management Program, JIA, requests for surveys , the Annual Review, the Magazine, the forum(s) and the general day to day administration tasks that are involved ever since. I have also managed to complete the 2nd Annual NRAS 10k; my first ever attempt at such a distance, in just about my ideal time of 1hr15mins.

The highlight of my time so far was my trip to the coordinators conference at Ansty Hall where I got to meet many of you in person for the first time. I had the opportunity to formally address the group about the plans for the growth of Membership (which I hope wasn’t too long and tedious for those of you who were there), and more importantly, to hear your thoughts on the subject. I got some great insight in to your priorities which has made such a difference to my approach – specifically to the current Magazine, which will hopefully by hitting your doormats on or around the 5th September...

I do think I have been very lucky in relation to my inauguration in terms of timing as not only did I get to be a part of the conference, I was also able to attend the amazing 10th Birthday party that we held at the Warwickshire Golf & Country Club. It was another chance to meet some more of you in the flesh, as well as a great learning experience. On another note, I will be remembering the name of that cake maker for my future, wedding related, reference!

My 3rd outing, wearing NRAS colours so to speak, was to the rather swanky meeting room on the 34th floor of Guy’s Tower in London. The views were absolutely spectacular as Ailsa and the team from the Expert Patient Program launched the Self Management Program to a room full of Members, Health Care Practitioners, Commissioners and other interested parties. I don’t think there could have been a better way for me to get to grips with the important issues for NRAS without listening to the speeches and meeting all of the people involved in all three of these events.

Unfortunately, we are going to be saying goodbye to Emma Nelson at the end of this month, Emma has been with us as administration assistant and 'girl Friday' for a year now and has been the glue holding the department together fthrough several staff changes, I have lost count of the number of times I have had to “pick her brain” in my short time here! Moving forward, Gail Slobodzian is moving over from the Helpline to become a full time Member of the Membership department. Bearing in mind these changes, we are looking at new and interesting benefits to Membership that will hopefully be easy to manage – to be announced once this magazine has made it out in to your hands.

Next week you will no doubt be hearing about the new additions to the team, so I will allow the next blogger their moment in the sun so to speak and keep schtum.

Happy weekend folks, I am off to Stafford this afternoon to score for the 11th annual charity cricket match in aid of Leukaemia Research, between Staffordshire’s Barmy Army & the Rest of the World’s Barmy Army, I will then be going to Grace Rd, Leicester for Kent’s 2020 quarter final on Saturday night, then on Sunday I will be attending a celebrity packed (if you consider cricketers to be celebrities) charity cricket match in aid of a prostate cancer charity in Melton Mowbray... So now you know my guilty secret, those of you that have met me will have guessed that I had something ‘strange’ up my sleeve, I wonder if any of you had thought that I might be a cricket fan?

Howzat?!

Hello from the helpline team

2011-08-10T11:19:00.000+01:00

I hope that you are all enjoying the lovely weather which has at last arrived, and perhaps, looking forward to your holidays. We hear from lots of callers prior to taking a holiday with concerns about travel insurance and how they should manage their medication or who need information about vaccinations. We have a list of travel insurance providers, all of which have been recommended to us by our Members, so if you are struggling to get insurance give the helpline a call! Likewise we have information and help to offer if you need to travel with medication or need vaccinations.

Calls vary incredibly to the helpline but it is becoming increasingly evident that people are experiencing difficulty with benefit applications, particularly the one for Employment Support Allowance (ESA), if you have found yourself in this situation then get in contact with us and we will do our best to help or, if we cannot, we can direct you to other agencies who specialise in benefits help. With the help of the Disability Alliance we have just revised the Benefits and RA and DLA booklets and they should be in the office and ready to order by Friday 5th August.

People struggling to stay in employment or to get back to work also make up quite a lot of our calls. The 2 work booklets, originally published in 2007 have been updated recently and are a huge resource for those of you experiencing work issues. The booklets entitled ‘I want to work’ and ‘When an employee has RA’ can also be ordered online. Clare, NRAS External Affairs Director has been responsible for developing a new work resource based on the very successful WorkWise Workshops which were held throughout England and Wales in 2010. The materials are now available on the NRAS website and feature videos of the presenters:- an OT with RA, an Occupational Health Advisor, an employment lawyer and an introduction by Sarah Wallace, one of our Members. There are also all of the written materials developed for the workshops, featuring a very useful sheet of frequently asked questions, available to download form the website. You can view all the resources on this link www.nras.org.uk/workwise/de... .

Well, it is lovely and sunny outside so I am off to soak up some of the rays. I wish you all a happy and healthy summer and, whilst it is lovely speaking to you, hope that you won’t need our services!!

Best wishes

Lorraine