The NRAS Blog

'Hello: Life as a Government Affairs Officer' by Leo Watson

noreply@blogger.com (NRAS) — Fri, 05 Apr 2013 16:42:00 +0000

It was a cold February morning when I first touched down in Maidenhead and NRAS HQ, and since then my feet haven’t even so much as skimmed the ground (which is less than I can say for the snow!).

As the new Government Affairs Officer, my days have been jam-packed in the seven weeks since I joined. Hardly surprising when you consider the biggest changes in 60 years to both the NHS and welfare system have just come into force.

Having some experience of the health and reforms owing to an internship with Cancer Research UK, before joining the NRAS family, I have been able to throw myself straight into the heat of the debate. Already I have attended numerous meetings with charities we are working with to champion the cause of fluctuating conditions, had a blog on removing prescription charges for people with long-term conditions published on the leading political blog ‘Left-foot Forward’ to then be used by the SNP to bash Scottish Labour and also given a presentation on the welfare reforms to our Leeds NRAS group. And this is just a very small sample of my recent activities.

The vast majority of my time, both now and in the future, will be spent on all things concerning welfare reform, social care and Scotland. I have been particularly struck by the scale of the challenge facing people with RA and other disabilities owing to the new welfare reforms, and while the government is justified to try and reform a system that has largely been untouched for the past two decades, it cannot be denied that another key aim is also to substantially trim the overall bill.

A recent report by the think tank Demos and charity Scope has revealed that by 2017-18 about 3.7 million disabled people will collectively lose £28bn as a result of the reforms, with some individual potentially standing to lose out on £23,000 each over the next five years under the new system.

The introduction of Universal Credit, which rolls a number of income-related benefits into one simplified payment (such as income related Employment and Support Allowance (ESA), job seekers allowance and housing benefit) seeks to ‘make work pay’ by ensuring it is always financially beneficial to be in work. The biggest change for people with disabilities is the replacement of the disability living allowance (DLA) with the personal independence payment (PIP), which will see the vast majority of people retested under a new system to assess their daily living and mobility needs.

It is around the issue of PIP that I have done much of my work so far. After many problems with the assessment process for ESA through the Work Capability Assessment, we have been lobbying the government, as well as managers at Atos and Capita, hard to ensure they truly understand the fluctuating nature and intricacies of RA. We hope the work we have done will pave the way for a better quality assessment under what will be a stricter means of testing an individual’s needs.

One thing I have learnt in my short time with NRAS is you are never short of things to do. Life has moved at 1,000 miles-an-hour and I cannot believe seven weeks have already been and gone. There is a lot of challenging work ahead and I am looking forward to everything that it will bring and hopefully I can meet many of you along the way.

Lastly, I would like to thank everyone at NRAS for helping me settle in! They have been great.

Leo Watson
Government Affairs Officer
NRAS

'Farewell Blog' from Sarah Kate

noreply@blogger.com (NRAS) — Fri, 22 Mar 2013 16:55:00 +0000

Hi all

I’m afraid to say this is the very last blog I’ll be writing as part of the NRAS team as today is my last day here on the helpline. It’s been an absolute pleasure to work here and speak to so many of you on the phone but life and love are moving me in other directions.

Since starting (for the second time!) with NRAS I have been involved in all sort of things from fun, cake-fuelled fundraising events to educational training sessions and helping out at group launches. I have learnt an awful lot from my colleagues here on the helpline team and been involved in reviewing and updating the information we produce as well as writing short pieces for the NRAS magazine and, most recently, conducting a piece of research into the use of social media with Ruth our Digital Media Coordinator. But, most importantly, I have tried my best to answer all manner of questions from you guys on the phone, by email and from the Health Unlocked community.

I will leave with one of my favourite memories of NRAS being the 10k run last year. Unfortunately the scheduled event was cancelled due to bad weather but this wasn’t enough to deter the team of (mostly coerced!) runners from NRAS. So, dressed in our very fetching ‘Village People’ themed outfits (complete with false moustaches) we ran a long, hot 8 laps around the business park, much to the amusement of the on-looking offices, and raised over £300 for NRAS!

I will miss everyone here but I will be excited to watch the progress of NRAS from afar as they expand further and get involved in yet more projects, including hopefully providing a service for those with juvenile forms of arthritis in the near future.

I hope you all have a lovely Easter.

Kind regards

Sarah Kate
NRAS Helpline Co-ordinator

'How Time Flies...' by Kim Fitchett

noreply@blogger.com (NRAS) — Fri, 15 Mar 2013 16:44:00 +0000

I can’t quite believe that the last time I wrote my blog I had only been here three short weeks; I sit here today having just completed my 7th month at NRAS. And what a busy 7 months it’s been!

In October of last year, only two short months after I started here, I came up against a huge learning curve when my supervisor and mentor since joining (Maimie) sadly had to leave NRAS. Having only worked at one job before this, even though for a long while, I didn’t see myself as having too much experience other than in the office admin world so coming into this job where there was so much scope for learning and growing, I really depended on Maimie in those first few months for support and guidance. It wasn’t until late November that we found a replacement for her, so I had a couple of months to try and fill some very big shoes and put all I had learned into practice! I will never regret having those few months as I feel like (and I hope my manager Clare would agree!) I held the fort fairly well and got so much out of jumping in with both feet! As quite a shy and most of the time a self doubting person, I felt like this was a huge step for me, it taught me to have more confidence and to remember that if you put your mind to something, you can be successful.

Moving on from self indulgence... I have seen and been part of the launch of four NRAS groups – Bath in September, West Dorset in October, North Hampshire and Winchester only last week and Cambridge just last night! I have been to my first member’s day that was held in October last year. We welcomed a new member of the Volunteer Network team to NRAS who is now my trusty sidekick, Gill (she wrote her first blog a few weeks back...) and have since been in planning for many exciting upcoming events for 2013.

As you will see from above it’s a busy time for our NRAS groups with four launching in the last 6 months and we have another two in the pipeline to launch by the beginning of July. Wrexham area NRAS group (North Wales) will be launching on Tuesday 16th April held at the Catrin Finch Centre on the Glyndwr University Plas Coch Campus, full details can be found here: www.nras.org.uk/help_for_yo... and we have just confirmed the date of the Frimley/Sandhurst area NRAS Group launch for Wednesday 3rd July – full details for this launch will come out as soon as we have everything confirmed, so keep a check on the website!

We also have an information evening in Redditch taking place on Thursday 21st March, full details can be found here: www.nras.org.uk/help_for_yo...
The first group meeting of West Dorset on Thursday 28th March, full details can be found here: www.nras.org.uk/help_for_yo...
and finally the first group meeting of Bath & West Wiltshire on Wednesday 10th April, full details can be found here: www.nras.org.uk/help_for_yo...
We have much planning in the pipeline for more new group launches this year, so keep a look out on here and our website during the year to see what is going on in your area!

Just want to add that a very nervous Gill presented for the first time at the group launch in Basingstoke last Wednesday and not to a small crowd with the room filling to over 100 people. She did an amazing job, so well done to her Onwards and upwards!

Have a lovely weekend everyone.

Kim Fitchett
Volunteer Network Coordinator
NRAS

'Misconception - Barriers to understanding RA' by Oli Hoare

noreply@blogger.com (NRAS) — Fri, 01 Mar 2013 17:34:00 +0000

I decided to stray from my typical blog set up this time around and instead of talking about cake, I want to talk about a topic I hear frequently; the misconception of Rheumatoid Arthritis.

Now I’ve been with NRAS for two years, an easy number to count, but I could not tell you how many times someone has heard the ‘arthritis’ in Rheumatoid Arthritis and jumped the gun to thinking I’m talking about an older generation’s problem. I’m so used to this being the reaction, that recently when I delivered a presentation to a group of people unfamiliar with the disease, 30 minutes of the 45 minute presentation was spent informing them of the disease, how it is treated and then how NRAS has a role, before we even got on to the topic of why I was there to speak to them. Now that is the extreme, but I hope that one day we will not need to first explain the disease before we explain the charity.

Fortunately the driving wheels of this process are in motion and NRAS is pleased to bring you the very first RA Awareness Week, to be held between 24th and 30th June this summer.

With this week we want to emphasise the important message that RA is an autoimmune disease with no generational barriers. Most people are still of a working age when onset occurs! Events and activities will be planned throughout the week so if you want to get involved to help us spread the message, watch this space to find out more information about what is happening near you and what you can do to support us. Facebook ( www.facebook.com/nationalrh... ) and Twitter ( twitter.com/NRAS_UK ) will give you the best updates on the Week and how you can take part.

I do hope you get involved in the week and help us to raise awareness of RA.

Oli
Trust and Grants Fundraiser

'The value of social media' by Deborah Flitter

noreply@blogger.com (NRAS) — Fri, 15 Feb 2013 15:31:00 +0000

Dear all, I can’t believe that it’s nearly spring again. It’s so nice to be able to see where I’m going when I leave work at the end of the day, though I have a 30 mile journey so it will be a few weeks before I am no longer arriving home in darkness. I’ve found a lovely cross country route to drive along and am looking forward to enjoying the lovely countryside...anything not to have to suffer the M4 every day!

I found with the dark evenings, that I began to spend some time on facebook which is a bit different from the forums I used to frequent. I’ve been an avid user of forums ever since I’ve owned a PC, mainly on music fan sites chatting away to people who share my (some would say) dubious tastes in music. I have made some wonderful friends who I’ve been to concerts with and who have extended beyond the initial interest groups. We have often discussed that our useage of the forums suited times of our lives when maybe we needed a little extra support or just someone to chat to who understood something we were going through. The forums provided the perfect vehicle to make friends and maybe their initial subject matter for me was irrelevant.

I am gradually getting to grips with facebook, keeping in touch with old friends that I don’t see much and most importantly, using it to very slowly build up a relationship with some extended family members who entered my consciousness rather unexpectedly a couple of years ago. It’s proving to be a fascinating journey!

Socialising online has been a very positive experience for me and I find comfort in the thought that should I ever need support for anything health related, I will have no problem accessing information and forums, and I will be able to find other people who will understand what I am going through.

NRAS does fantastic work using social media to communicate with and to allow communication between people living with RA, including Facebook, Twitter, NRAS HealthUnlocked and our own members forum. I imagine that if you’re reading this blog you may already be aware of the power of social media but if you haven’t yet explored this then please do. Also if you have time we would really value your participation in our current survey The value of Social Media to those living with Rheumatoid Arthritis. You can find the information about this on our website.

Happy socialising!

Deborah Flitter

PA to Chief Executive

'You never know what’s round the corner......' by Gill Weedon

noreply@blogger.com (NRAS) — Fri, 08 Feb 2013 15:50:00 +0000

I have spent most of my working life in Finance and Payroll and my happiest working days were from 2004-2011 as the Finance and Office Manager for a Management Consultancy. When that job relocated into Central London I took the big (and difficult) decision not to take on the daily commute. This meant the following year was not so happy, I spent my days working on short term contracts with people who seemed to want to do as little as possible in their working day.

My frustration led me to say to my other half ‘I have to find a new job that means I interact with people, but who is going to take me on to do something new at my age?’ Along came NRAS and Clare must have seen something in me meaning she was willing to take on this old bird to try something completely new. I am excited about the challenges ahead being the Volunteer Network and Project Supervisor. We have two new group launches booked in at the beginning of March – Basingstoke and Cambridge and many other prospective new groups in the pipeline. If you would like to know more, or find out about our groups, visit www.nras.org.uk/groups, or just get in touch – gill@nras.org.uk.

I have already enjoyed being out and about meeting patients and HCPs alike. Additionally Kim and I have been scoping the venues for the upcoming training days that you will hear about soon.

The best thing about working at NRAS is that everyone has the same work ethic – what an amazing group of people, they work hard and they play hard.

Wish me luck!

Gill

Volunteer Network and Project Supervisor

'Oh What a Lovely Tea Party!' by Val Eyre

noreply@blogger.com (NRAS) — Fri, 01 Feb 2013 14:54:00 +0000

Another January has passed oh so quickly, I can’t quite believe today is the first day of February 2013! My son Alex will be 18 at the end of the month, it only seems like yesterday that we were bringing him home from hospital to meet his older sister and now I’m planning his 18th birthday party!

Our NRAS Tea Party got off to a good start this week as we held one in the office on Monday, we had some very yummy cakes which were devoured by all during the day. We were lucky enough to be given recipes by some celebrity chefs – The Fabulous Baker Boys, Lorraine Pascale, Greg Wallace, Tom Kerridge and Rachel Khoo. I made a sticky toffee pudding, (a Baker Boys recipe), which was very easy to make and was delicious! If you would like to hold a tea party in aid of NRAS download a pack from our website at www.nras.org.uk/support_us/... or contact Bronwen at Bronwen@nras.org.uk and she will send you one – happy baking!

As 2013 progresses so people are starting to take on challenges in aid of NRAS, we have guaranteed places in both the Great North and Great South Runs and the Royal Parks Half Marathon. If this is the year you would like to take on the challenge of a half marathon then get in touch with me at val@nras.org.uk and I will happily give you more information. We are in the final stages of confirming the date of our NRAS 10k run which will hopefully be in September this year – watch this space!

Here at NRAS we are always looking for new ideas for ways in which people can support us, if you are taking part in an event and would like to share it with us we would love to hear from you. We have just set up a new events page on Facebook so that we can get more involved with our supporters and share ideas, the link is www.facebook.com/NRASEvents, take a look and give us your thoughts.

Sadly we are unable to get any guaranteed places for the London Marathon, however we have always been very fortunate to have people secure their own places and run for NRAS. If you are lucky enough to have a place in this year’s London Marathon and would like to run for NRAS then get in touch as we would love you to wear one of our newly designed running vests – they are very stylish!

Its almost time for the weekend to begin, I usually enjoy some time at home but not so this weekend! My husband and I decided we would completely overhaul our bedroom (seemed like a good idea at the time!) The walls have been stripped of their paper leaving lots of little holes in the plaster. I know what I will be doing this weekend!

Have a good weekend.

Val
Events Fundraiser

'Let's get physical!' by Sarah Kate Ball

noreply@blogger.com (NRAS) — Fri, 25 Jan 2013 16:19:00 +0000

Hi all

Wishing you all a very belated happy new year!

I don’t know about you but in these murky depths of snowy January I’m finding its getting tough to stick to my very well-intentioned new year’s resolutions. Many of mine were along the typical lines of ‘eat more veg, avoid all the leftover Christmas goodies and be more active’, so I’ve been weaning myself off chocolate (slowly!) and taken up yoga. I got off to a bit of a wobbly start trying to bend myself into positions that I’m sure should only be possible by members of the feline species! But even just 3 weeks in I can feel my balance improving and I’ve mastered the art of remembering to breathe – quite important! It is difficult to motivate myself to get off the sofa and venture out into the cold night but it really is worth it. And I know from speaking to many of you on the helpline that while exercise is often the last thing you feel like doing, it really can have widespread benefit and be very enjoyable when we’ve mustered the motivation. So if you haven’t yet made a 2013 resolution maybe it could be to get more active!

Exercise has been proven to improve mood and aid sleep quality as well as having many physical benefits including improving cardiovascular health, joint flexibility and muscular strength. Obviously you need to choose an exercise that is right for you, and often more low-impact exercises such as walking, swimming and stretching exercises like tai chi will be most suitable for those with RA. But it’s also important to choose something you enjoy. If you are looking to start a new exercise regime it would be a good idea to have a chat with your GP or rheumatology team, or ideally a physiotherapist who should be able to advise on which types of exercise will be most suitable for you specifically.

There’s lots of information around on different types of exercise and how to build up your fitness slowly, especially at this time of year when everyone seems to have the exercise bug! There’s some good general information on the NHS Choices website ‘Livewell’ section: www.nhs.uk/LiveWell/Fitness...

But for more specialist information on exercising when you have RA, try the NRAS website and Arthritis Research UK’s useful ‘Exercise and Arthritis’ booklet, available on their website:

NRAS lifestyle section on exercise: www.nras.org.uk/about_rheum...

ARUK Exercise and Arthritis: www.arthritisresearchuk.org...

If none of the more conventional types of exercise tickle your fancy you might also like to have a read of our brand new ‘Sex, drugs and RA’ article which might help to inspire a more ‘alternative’ way of getting active this year! www.nras.org.uk/about_rheum...

So I hope you enjoy the last few days of January and any new activities you decide to undertake in 2013, whether out in the fresh air, immersed in the swimming pool, or under the duvet!

Best wishes
Sarah Kate

P.S. While you are online, before you start doing any of those active things, please fill in our new ‘Social Media’ survey investigating the use of social media by those with RA:
www.surveymonkey.com/s/nras...

Thanks!

'Let's talk about sex baby....!' by Clare Jacklin

noreply@blogger.com (NRAS) — Fri, 18 Jan 2013 15:14:00 +0000

Yes thought that might catch your eye!

Firstly I would like to say thank you to so many of you for completing the NRAS online survey on emotions and relationships. Tomorrow Friday 18th is the closing date for completed questionnaires and a staggering 1486 people have taken part in the survey so far. Your answers will send a powerful message to all those involved in your care, that RA can have impacts far beyond the physical manifestations of the disease itself. Your candid responses have been emotional to read to say the least and I thank you for being so open on such sensitive issues. There is a great deal of analysis to do now to enable us to address as many of the issues you’ve raised as is possible in the new NRAS booklet on the topic to be published in late spring.

As well as working on this important piece of work my team are busy planning for two new groups to be launched in spring in Basingstoke and Cambridge. Visit the NRAS websitewww.nras.org.uk/groups for full information on these and all NRAS group meetings. We are also planning regional volunteer training days in April and May to empower and engage our wonderful NRAS volunteers across the UK.

So what else is coming up for me this first quarter? There are many meetings to look forward to – Long Term Conditions Alliance conference; a NICE workshop on drugs' technology appraisals; a visit to the North Wales ARMA network then off to Manchester to present to North West consultants, registrars etc. on “What do patients want?”; Royal College of Nursing Rheumatology conference in Edinburgh and of course the big British Society of Rheumatology conference in Birmingham at the end of April.
Just for fun though I am also directing a local church pantomime, oh yes I am, and taking part in a charity dance show so it isn’t all work and no play.

As I close my first 2013 blog I’d like to wish you all a Happy & Health New Year.

Clare Jacklin
NRAS Director of External Affairs

Predicted campaigning priorities for 2013

noreply@blogger.com (NRAS) — Fri, 11 Jan 2013 16:07:00 +0000

Yes, it’s that time of year, when we try to make predictions about NRAS’s future campaigning priorities –welcome to this edition of ‘Crystal Ball Gazing LIVE’ with your host Jamie ‘Professor Brian Cox’ Hewitt.

In recent times, NRAS campaigning has focused on strengthening our activity across the Devolved Nations, broadening out the variety of issues which NRAS lobbies on and trying to get our members more actively involved in campaigning at an earlier stage.

And we’ve had some real successes - with a series of ‘firsts’ including the launch of a new campaigns network in Scotland, our first ever live ministerial webchat, the introduction of new e-campaigning tools on our website, and the launch of our first annual RA Summit.

In 2013 our main objective is therefore to keep this pioneering spirit alive to ensure we have the biggest possible impact. So, without further ado, here are my top three picks for what you can expect to see the NRAS Government Affairs Team beavering away on:

1. Commissioning – there is no doubt 2013 will be a landmark year for the NHS with a raft of new organisations springing up to take over responsibility for commissioning local health services. As you would expect, NRAS is in the thick of the action, and we will be working extensively with partner organisations on a Department of Health pilot project to help advise a local Clinical Commissioning Group on redesigning a rheumatology service and build dedicated commissioning tools, we also expect to launch an expert patient commissioning pack, and are even in discussions about helping to deliver some aspects of local rheumatoid arthritis service. Exciting!

2. Cementing our position as thought leaders – we already have an enviable reputation in the charity sector for punching above our weight, but the raft of changes across the UK means that the battle to have our voices heard will intensify. We want to continue to be the ‘go to’ organisation for matters relating to rheumatoid arthritis, so expect to see more campaigning work to uncover baseline information about rheumatoid arthritis services across the UK and to see us continuing to put government policies under the microscope though our next RA Summit.

3. Implementation of the welfare reforms – last year our time was dominated by commenting on multiple welfare reform consultations. This year or focus will be on the practical implementation of these reforms. Expect to see Atos publish its revised medical protocol for RA shortly (which NRAS has been involved in) and to see the Government Affairs Team try to work constructively with DWP appointed providers to improve the quality of information to welfare assessors about the disease and for us to develop new tools to help people with RA understand the hurdles posed by the new reforms.

Of course, these are not the only things we will be working on – I forgot to mention the planned launch of our second campaigns network in Wales, additional work we will be doing to monitor the passage of the Care and Support Bill through the UK Parliament, the organisation of our biennial Healthcare Champions Awards and new campaigning activities for World Arthritis Day – to name but a few (just another typical year at NRAS then).

We had better get cracking!

Jamie Hewitt
Government Affairs Manager
NRAS

'Happy New Year!' by Emma Seymour

noreply@blogger.com (NRAS) — Fri, 04 Jan 2013 16:09:00 +0000

Whether it’s giving up chocolate/alcohol, joining a gym or quitting smoking, most people want to make a fresh start when it the clock strikes midnight on New Year’s Eve. However, often these New Year’s resolutions barely last the first weeks of January (as I’ve found so many times in the past!)

So this year, I’m trying to make my resolution manageable. Last year I made the big move of buying my own house so this year my plan is to grow some herbs and plant a vegetable garden. I’m trying not to be too ambitious with what I can grow or trying to introduce too many varieties. I’ll try my best but I know there’s no guarantee they won’t end up looking shrivelled and half-dead! For me, resolutions should be more something that you’ve been thinking about for a while but haven’t quite got around to (and I have SO many of them so it’s good to get at least 1 of them off my list!)

What are your New Years’ Resolutions?

• Have you thought about holding a NRAS tea party? A great way to start the New Year by gathering all your friends and family together and raising funds at the same time. More information is available here (although we also have lots of challenge events for those made people who have made resolutions to run a half marathon/10k/skydive!)

• Have you seen our magazine and thought, “I’d like to receive that” but haven’t quite got round to joining NRAS? Why not join online now and receive the latest edition which is due out next week!

• Have you been thinking about going along to one of our group meetings, but somehow not found the time? Lots of new group meeting dates have recently been announced and there are also new groups in the planning stages so do keep an eye on our website for further news.

• Have you thought about saving money by buying your Christmas Cards in the sales? We have packs reduced to just £2 in our NRAS ebay shop.

Why not make 2013 the year you get more involved with NRAS – visit our website www.nras.org.uk or call us on 0845 458 3969 to find out more. Even if just in a small way, it really does make a difference and helps us to continue working for a better life for people with RA.

Happy New Year from all of the NRAS team :o)

Best wishes

Emma
NRAS Membership Supervisor

Ailsa's Christmas Blog

noreply@blogger.com (NRAS) — Fri, 21 Dec 2012 12:47:00 +0000

We are coming to the end of what has been I think the busiest year ever for NRAS and I think I speak for the whole team when I say we are looking forward to the Christmas break and being able to re-charge batteries, catch up on sleep and have a rest from emails for a while! I love Christmas, but what I hate is the stress that automatically comes with it!

I was up till 1.45 am this morning, chanting Bah Humbug, desperately trying to finish Christmas cards so that they have a chance of being delivered before Christmas. I have probably failed completely for the overseas cards and my brother and family definitely won’t get their presies till New Year! I have a cousin who usually has all her cards and presents done and dusted by the end of October which I just don’t seem to be able to get near to, however much I might aspire to it!

However, when I look back, we have made huge progress this year on many fronts and in the midst of the most massive re-organisation of the NHS since its inception. Next year, at some point – probably towards the end of the year - we will see a major national audit on early RA which all rheumatology units will have to complete about their service and this is most welcome as it will help to drive wider implementation of the NICE RA Guidelines which we shall all be happy about. The Quality Standard in RA will be published in June/July which GP commissioners will be using to bench mark the quality of services being provided. Watch out for the public consultation in January – we will be flagging this on our website. And, in addition, in 2013/14 RA indicators will be introduced to the GP Quality Outcomes Framework which should help to drive shared care with GPs. We are very much involved in piloting a Patient Reported Experience Measure for use by rheumatology units in RA and the pilots will start giving these questionnaires out in clinic from January so if you attend a unit which is part of the pilot scheme, you may well be asked to fill out a survey to feedback, anonymously, about your experience of care in that unit. A chance for the patient voice to be heard!

The NRAS team will be back in the office on the 2^nd ready to help you in any way we can in 2013. I’m going into hospital for a right knee replacement on the 28^th December by which time after the Christmas celebrations with family, I shall be ready for a rest!!

On behalf of everyone at NRAS, may I wish you and yours a very Happy Christmas and all you would wish for yourself in 2013. Thank you for supporting NRAS in 2012 by contributing to our social media and blogging sites, we look forward to hearing from you all in 2013!

Ailsa Bosworth

CEO

NRAS

'Christmas Time at NRAS' by Oli Hoare

noreply@blogger.com (NRAS) — Fri, 07 Dec 2012 12:41:00 +0000

It seems that every year, no matter how hard you try, Christmas has a habit of sneaking up on you – you can be happily enjoying the change in the leaves as summer turns into autumn when crash, bang, wallop – Christmas has arrived! Now this is not a bad thing, especially as fundraising gets to enjoy many a festive treat:

This evening for example, is the NRAS Christmas Concert, which is being held in Maidenhead, so if you do happen to be in the area, we would be more than happy to welcome you in for a mince pie and sing-a-long. Details can be found here: www.nras.org.uk/support_us/... and we have tickets remaining so you can just turn up!

Also, fundraising is in the midst of the Big Give Challenge, which is a matched giving challenge, aiming to double your donation against a corporate partner at no extra cost to you! Our project, which we are hoping to raise money for, is: ‘Supporting Family; life with rheumatoid arthritis’ and is aimed at developing our helpline and website to better support family members who have a loved one living with RA. Further details can be found on our project page here: new.thebiggive.org.uk/proje... where you can also donate. The matched funds are released at 10AM today and tomorrow, - so it is important that if you want to donate, to do so, as soon after 10AM as possible to stand the best chance of getting your donation doubled!

And finally, the NRAS Knit Factor, which I hope you are all aware off, is in its prime due to the cold weather we are having – basically we are asking our supporters to knit items for us and send them in to the office, where we list them on eBay to raise funds for NRAS! The take up has been phenomenal and there is still time to knit something and send it in, but don’t take too long, before you know it summer will be back around and nobody wants knitted speedos! Please have a look at the items we have for sale here: stores.ebay.co.uk/NRAS-Char...

Finally I wish you all a very Merry Christmas,

Warm regards,

Oli
NRAS Trust and Grants Fundraiser

'No rain, no rainbows!' by Victoria Butler

noreply@blogger.com (NRAS) — Fri, 30 Nov 2012 16:18:00 +0000

I have had an amazing year. In September I got married, and my wedding day was about as perfect as it could have been. Nothing seemed to go wrong, and we were lucky to get the one sunny day that week, which meant that we could get married outdoors. This was followed by a honeymoon that fulfilled my lifetime ambition to visit one of the Hawaiian Islands (Kaua’i), an experience I shall never forget.

Nobody has a perfect life. When I was 20 one of my close friends committed suicide; something I don’t think I will ever be able to say I have fully come to terms with. However, had that never happened to me, I might never have come to work at NRAS, as I feel that the helplessness of that situation instilled in me a desire to find a job where I felt I was able to make a difference and really help people. A lovely phrase I picked up in Hawaii (land of the rainbows) expresses this as ‘no rain, no rainbows’.

Overall I think I have been very lucky in my life and with my health, and I like to think that I appreciate how lucky I am. Working on the helpline does help to keep me grounded, as I frequently hear terrible stories about the troubles that some people face in everyday life, whether due to their rheumatoid arthritis or other factors. Some of these people manage in the worst of circumstances to see the positives, and many of them will say that there’s always someone worse off than them. Having said that, everyone is entitled to dark days where you ask: ‘why me?’

The exact causes of rheumatoid arthritis are unknown, though we are aware of some of the factors. There is a genetic susceptibility, and there can be environmental factors, such as smoking or heavy drinking. We also know that more women are affected by the disease than men, which points to a potential hormonal factor. Another common comment that has come through on the helpline was the view that some kind of physical or mental trauma may have triggered RA in some people. Previously we have tended to say that this is purely anecdotal, but that it comes up regularly, but recently we came across a study that seems to provide evidence for this, which may be of interest to anyone that thinks that trauma may have triggered their disease:

http://rheumatology.oxfordjournals.org/content/41/4/450.full.pdf

You may also find our articles on the genetic and non-genetic causes of RA useful:

http://www.nras.org.uk/about_rheumatoid_arthritis/what_is_ra/why_me/the_genetics_of_rheumatoid_arthritis.aspx

http://www.nras.org.uk/about_rheumatoid_arthritis/what_is_ra/why_me/what_is_the_cause_of_rheumatoid_arthritis_nongenetic_factors.aspx

With all the rain we’ve been having lately, the rainbows must be on their way!

Victoria

Information & Helpline Co-ordinator

'Covert spying mission' - Andrew Scott

noreply@blogger.com (NRAS) — Fri, 23 Nov 2012 15:22:00 +0000

It’s a little over six months since I joined NRAS and already my time has come to write another blog. Despite a whole six months going by however, it's only in the last few weeks that I've really come to truly appreciate the value that patient groups hold and the great responsibility they have. A great responsibility that NRAS has.

I genuinely believe that we have some great healthcare professionals in this country but even if they were able to give each patient many more hours than they currently have the resources to do, it still would not be enough time for someone potentially facing a chronic condition, and with that, a never-ending list of questions.

Patient groups help to fill that void by offering some of the answers to these questions at a time of the patient’s choosing, giving them time to think about the condition and what it may mean for them. This is not taking away from the role of the doctor but complimenting their work by offering the patient reliable sources of information so they can then discuss their condition in an informed way. They also allow the patient to talk directly with someone who has “been there before” and knows something of what they are going through.

In the interest of doing a thorough job, I’ve spent the last few weeks doing some secret undercover work and learning more about different patient groups and what they do. Added to that I have been Googling a number of conditions. The internet is awash with opinion and when someone is in a vulnerable position a lot of that information can be quite daunting. It can also be factually incorrect or skewed so that the negative far outweighs the positive. The media don’t help by only ever reporting on the most extreme cases but some patient groups can be no better.

I do think NRAS can hold its head high when it comes to providing concise understandable information on its website about rheumatoid arthritis, not just about what the condition is, but what the prognosis can be. It also manages to keep abreast of new developments and areas of exciting research. Many organisations appear to only promote the worst case scenario in order to make their condition seem worse and therefore get more attention. While it is important to highlight the seriousness of RA, there is also the need to offer hope.

Any comments about how we can continue to improve our services are always welcome.

Andrew Scott

NRAS Press & PR Officer

Gail's Blog - 'Barcelona!'

noreply@blogger.com (NRAS) — Fri, 16 Nov 2012 13:02:00 +0000

It’s back to work for me after a lovely long weekend away in Barcelona. It was part of my birthday present from my lovely husband Andy. We arrived at 10.30 on Friday morning and headed straight to our hotel to drop off our bags. We had a lovely room on the 16th floor overlooking the harbour. What a wonderful view!

It was lovely wandering up Las Ramblas and sitting outside a coffee shop watching the world go by.The evening was nice and warm and we ate our evening meal outside.

The next day was sunny and warm. We decided to take the tour bus. A great way to discover the city. Andy was particularly pleased to see the Camp Nou stadium where he watched his beloved Manchester United beat Bayern Munich in the 1999 UEFA final. One of his favourite memories, he was there with our 15 year old son Adam – They still talk about it all these years later. They were especially happy when, after the match they went to their hotel to find the Manchester United team were staying there too. They took many photos which have been treasured ever since.

Sunday was another warm day and we took a boat trip and had lovely views of the Barcelona beaches. After lunch a wander around the aquarium was very relaxing.
There were other things on our agenda which we just didn’t have time for. We have decided that we need to return to continue our discovery of Barcelona. There is so much to see and do.

I returned to work to fine a nice big pile of Membership forms to process, now we have reached our 4000th member we look forward to building our membership even further. If you would like information about becoming a member please go to www.nras.org.uk

Now the sun, sand and sea is behind me I will start to think about Christmas. I have already bought my NRAS Christmas cards which you can also find on the NRAS website at www.nras.org.uk/support_us/...

Gail Slobodzian
Membership Administrator

'All my Christmases have come at once!' by Tammy Mallowan

noreply@blogger.com (NRAS) — Fri, 16 Nov 2012 13:01:00 +0000

Hi, my name is Tammy and I am one of the newest members of the NRAS Team. I have been here for three months now. I am the first point of contact for many people as I answer the phones and try to point people in the right direction, although I sometimes need pointers myself, as there is still a lot to learn. My role as an Administrator is to give help and support day-to-day to the Fundraising team although I also print reports and send out information to people phoning in.

Back in September I started receiving Christmas Card orders, which I send out every day. We’ve received so many orders that we are selling out completely on some stock! Soon I will be starting to process tickets for our Christmas Concert early next month, so hope to see many of you there and all your families and friends.

I am enjoying working here as everyone is so nice and lovely. I especially enjoyed our Panto last month and laughed so much that my cheeks hurts and I rediscovered stomach muscles that I thought I had lost. I must admit I love comedy but nothing prepared me for that Saturday night when I saw my colleagues dressed as the characters in Cinderella. I was more than impressed with the quality and standard of my colleagues acting, (honest), who put a lot of effort in to win some money for our charity. I suggested that they could even try to perform in every local theatre to raise money but I understand that time and other commitments might not permit that.

I was involved in the catering at our 1st Members Day, which proved to be a total success, and it made us all very proud. I also witnessed the 11th year anniversary of our little charity that has a big heart and last week we had another cause to celebrate when we hit four thousand members. It certainly feels as if all my Christmases have come at once.

Tammy Mallowan
Office Administrator

Autumn by Deborah Flitter

noreply@blogger.com (NRAS) — Fri, 16 Nov 2012 12:59:00 +0000

Hi Everyone

I love Autumn. The landscape is for me at its most impressive at this time of year and when the sun is shining I am in awe of the beauty surrounding me and the way it changes. Every day the light falls somewhere different and exposes little details I might not have noticed before, there is something about the light, the shadows and the vivid colours that makes me feel all warm inside. Autumn is my absolute favourite time of the year and this year I visited my first Arboretum where for once even I was stunned into silence as my eyes feasted on the beauty surrounding me.

It’s colourful in the office as well, and this provides another reason for feeling all warm and cosy for knitted items are popping up everywhere! The Knit Factor has taken over! I’m imagining you all sitting by the fire all safe and warm with the autumn wind blowing outside, knitting wonderful woolly creations to send to us for our ebay shop. If you don’t know what I’m talking about please do take a look on our website where you will find all the details and hopefully inspiration.

Take care, keep safe with the dark evenings x

Deborah Flitter
PA to Ailsa Bosworth

We must be ‘potty’ at NRAS HQ!

noreply@blogger.com (NRAS) — Fri, 26 Oct 2012 12:53:00 +0000

Bbbrrrrrrrrr! That’s all I have to say!

Well I will say a bit more, but hasn’t it got cold already? And I’m ashamed to say the word ‘Christmas’ has been floating around the NRAS office a bit too much already for my liking, with our cards for sale and the concert to organise. I refuse to buy any presents before December, partly because I’m disorganised and because I like to save the excitement for one month, as opposed to three!

My last blog was in July and a lot has been going on here, including, bizarrely, pantomime rehearsals. ‘Panto? In October?’ I hear you cry! 'That's another Christmas event, surely?'
Well yes. But it was all for NRAS as usual. Clare, our Director of External affairs had decided to write and direct a 25 minute pantomime for a local competition called ‘3 Potty Pantomimes for Charity . Three pantos would be performed, the audience would vote and the winning group would receive £250 for their charity. Ours being NRAS of course!

Now Clare loves acting and performing (you may remember she won a prize earlier this year for a Strictly Come Dancing type competition!) and so this was going to be easy! Emma, our Membership Supervisor, Lorraine, our Helpline Manager and Wendy, one of our Trustees also dabble in the arts. I, however, was last seen on the stage in my school’s performance of Grease, jiving around in the background of the chorus. Clare seemed to have me in mind to play Buttons in her version of Cinderella, and without really thinking about it, I agreed to be a member of the cast...

Rehearsals went ok, we were only allowed 8 hours beforehand but before I knew it the fateful night was upon us last Saturday! Everyone else seemed excited but I was hit by a wall of fear. As we were to be on last out of the three pantos, we crept into the back of the audience to see the first performance. This didn’t make me feel any better as the kids in this panto were practically professionals. Will definitely be seeing some of them on TV before long! Anyway, the time had come and we were backstage....Clare says I had gone a nice shade of green and this point, which I’m sure, is true and I felt like sitting with my head between my knees. 3,2,1 and we were on!

Now would you believe it? We only went and won!!! ‘Oh yes we did!’ - Sorry still in cheesy panto mode..£250 in the bank for NRAS felt good but I have already announced my retirement from treading the boards. Not for me I think! The applause was nice though...and we got a snazzy trophy (I’ve attached a photo of us getting a bit into the dance routine at the end).

The other thing taking up a lot of my time at the moment is *cue dramatic-ITV-intro-man-style-voice* ‘THE KNIT FACTOR!’

This fundraising idea was actually inspired by you and all of our other supporters! We wanted to put on something that everyone could be involved in, especially those with RA. So as you may have seen on here, we are asking everyone to try and knit something, get a picture of you and your creation, send it in to us at NRAS, and we’ll auction it on eBay to raise funds to help more people with RA!

You can find out more at www.nras.org.uk/KnitFactor where you can download the pack about the challenge, as well as a ‘How to Knit’ guide and a pattern for baby booties.
I hope many of you will get involved; we’ve had so many items sent in already, including a huge box of children’s hats today from a lovely lady and her granddaughter. Another knitter with RA said that it’s ‘great therapy for fingers and soul’ but please remember to take it steady, pace yourself and to rest during any flare ups. There’s a great article which advises knitting with arthritis and painful conditions which might be of interest to some of you - www.stitchlinks.com/pdfsNew...

So happy knitting and please get in contact with me on here or at ruth@nras.org.uk if you have any questions or need anything. Stay warm and have a lovely weekend!

Ruth
Online & Social Media Coordinator
NRAS

NRAS taps into the power of social media for World Arthritis Day

noreply@blogger.com (NRAS) — Fri, 12 Oct 2012 15:00:00 +0000

This year we wanted to put a new spin on World Arthritis Day so we've done a big social media push for the launch of our latest report the Rheumatoid Arthritis (RA) Responsibility Deal.

For those of you who haven't seen it yet, the RA Responsibility Deal contains a series of practical pledges for different audiences - including patients, healthcare professionals, NHS service managers and policymakers – that if implemented can help to make a real difference to the clinical outcomes of the 690,000 RA patients that live with this chronic autoimmune disease in the UK.

We want to encourage as many people with a connection to this chronic autoimmune disease to sign it as possible. The Deal forms part of a longer-term campaign to help raise awareness of RA and to try to get more of our members and more of the public involved in campaigning for the cause.

To support awareness we have collaborated with some major political blogs to demonstrate how the pledges in the Responsibility Deal relate to very current issues with the NHS.

- This morning I blogged on PoliticsHome, the most influential political news network in the UK, about the impact of the health reforms on patient self-management: www.epolitix.com/latestnews...

- This lunchtime another blog appeared on Left Foot Forward, a very influential progressive, evidence-based blog, about the impact of the health reforms on patient involvement: www.leftfootforward.org/201...

- And there is more to come, so please stay tuned during the course of today!

In addition to the blogs we have also been encouraging our members and the public to raise awareness of RA by changing their Facebook and Twitter profiles to the NRAS logo (and any other social networks people would like to express their support through).

On top of this we are launching a brand new e-campaigning function on our website to help promote the Responsibility Deal. This is the first time NRAS has done this and we hope it will allow members and the public to spread the word about this campaign much more easily.

But wait! There's more! To keep the campaign buzz going we will be launching further e-campaigning tools in the near future to encourage people to start contacting their local politicians (right across the UK) about the Responsibility Deal and encouraging them to sign-up and raise awareness of the disease.

It goes without saying that everyone at NRAS would be really grateful if you would please read the RA Responsibility Deal document and take a moment to sign the e-petition and pledge your support: www.nras.org.uk/responsibil... Please follow the links at the bottom of the page to be directed to the e-petition.

Jamie Hewitt
Governernment Affairs Manager

Christmas is coming!

noreply@blogger.com (NRAS) — Fri, 05 Oct 2012 12:21:00 +0000

I was lucky enough to go away to Spain for a few days last week with a few close girlfriends. A fine time was had by all with lots of delicious food, a glass or two of wine and lots of lovely sunshine! We were celebrating a rather significant birthday of mine which I hadn’t even wanted to acknowledge existed earlier on in the year!

On Saturday I am off to visit Portsmouth University with my son who will be leaving school next year. He has chosen five universities he would like to visit and I am very relieved to say that Chester is the furthest away! I’m hoping once he has been to see a few places he will be encouraged to work a little harder at school and finish his time at secondary school with flying colours!

Having recharged my batteries I am now ready for a very busy time in Fundraising. This Sunday we have 14 people taking part in the Royal Parks Half Marathon in aid of NRAS. We have been lucky enough to have been chosen by NOW Magazine as the recipient of any sponsorship raised by their team of runners. Sadly the weather isn’t looking promising for the day, however this won’t deter Ruth or I from cheering the team on as they take on the challenge of a half marathon. If you would like to sponsor any of the NRAS team taking part please visit www.nras.org.uk/fundraisers... . Good luck to all our runners on Sunday -you are all stars!

With Christmas fast approaching we are now selling our Christmas cards/wallets/wrapping paper – I should add that we chose and ordered these in January of this year! You can order your cards by either visiting our eBay shop at stores.ebay.co.uk/NRAS-Char... or give me a call on 01628 501547.

Our Christmas Carol Concert this year is on the 7th December and we are now finalising the programme for the evening. The concert will once again take place at All Saints Church in Maidenhead and we hope that as many of you as possible will be able to join us on the evening. I’m pleased to say the NRAS Ronettes will once again perform on the evening. If you would like to buy tickets give me a call on 01628 501547.

Our challenges/runs programme for 2013 is almost completed. We will once again have guaranteed places in both the Great North and South Runs, the Royal Parks Half Marathon and fingers crossed we will be able to hold our NRAS 10k once again (weather permitting). We have included some of our favourite challenges - skydiving and Hadrian’s Wall and the introduction of a new sailing challenge. Why not make 2013 the year to take one of our challenges? As always I would be happy to hear from you. Don’t forget to take part in ‘The Knit Factor’, now is the ideal time to start knitting your winter woollies to keep you warm during the months ahead. For more information on ‘The Knit Factor’ please visit our website at www.nras.org.uk/support_us/... or contact Ruth at ruth@.nras.org.uk.

As always I would love to hear from you if you have fundraising ideas of your own, we are always happy to support you in any way we can so get in touch at val@nras.org.uk or give me a call on 01628 501547. Have a great weekend, fingers crossed for a little sunshine!

Val
Events Fundraiser

Autumn equinox and sleep

noreply@blogger.com (NRAS) — Fri, 28 Sep 2012 13:37:00 +0000

Hi all

While I’m sad to see the end of summer (if you can call it that this year!), I’m very excited to see the leaves changing colour to signify the beginning of autumn, my favourite season. I don’t know about you but there’s nothing I like more than a bright, crisp autumn day, the excuse to get out my numerous pairs of woolly gloves and tea-cosy hats, tuck into some comforting hot puddings and warm myself by a good bonfire. The only thing I absolutely dread about autumn is getting used to the cold, dark early mornings; dragging myself out of bed when my brain is protesting that surely it must still be the middle of the night!

I find getting up a challenge and I consider myself fortunate that I’m a very good sleeper with the ability to sleep anywhere, on anything and with any amount of noise around me, but I’m aware that many others aren’t so lucky. But getting a good night’s sleep is essential for everybody, especially if you’re living with a long term health condition like RA. Fatigue is obviously one of the major symptoms of RA, and there is evidence to suggest that sleep and pain are intrinsically linked. Living with pain on a daily basis can exacerbate sleep problems making it more difficult to get to, or stay, asleep; and poor non-restorative sleep then contributes to daytime symptoms of RA, increasing pain, stiffness and fatigue. Which makes perfect sense to me, when you’re feeling tired and run down everything seems to get on top of you and any sort of pain is going to be more difficult to cope with. So getting a really good night of restorative sleep could be beneficial in many ways.

‘Sleep hygiene’ looks at simple adjustments that can be made to your bedtime routine and sleeping environment that can help you get to sleep more easily and stay asleep. One of the most valuable tips I’ve learnt (as I haven’t always found sleep so easy to come by) is that if you can’t sleep don’t lie and fret about it. I know I would worry about how tired I’d be in the morning, and the things I needed to do the next day all of which just resulted in making me anxious and putting my brain into overdrive! Exactly the opposite of the calm, relaxed state needed to fall asleep! If you haven’t fallen asleep within 20 minutes then get up. Go and sit somewhere dark, quiet and warm. Maybe read for a while, or make a warm milky drink and try not to worry that you’re not asleep. We sleep in cycles of 90 minutes, and it doesn’t matter if there is a break between these periods of rest.

We have compiled, with the help of Dr Shilpa Selvan and Dr Lyn Williamson from Great Western Hospital, a Sleep Hygiene guide which is available to download from our website: www.nras.org.uk/about_rheum...

It includes lots of helpful hints about your sleep environment, things to avoid, relaxing exercises, and sleeping positions. There is also lots of useful information and tips on getting a good nights’ sleep on both the British Sleep Society website: www.sleeping.org.uk/

And the NHS Choices website: www.nhs.uk/livewell/sleep/P...

I also recently found out that some research suggests that a lack of sleep can contribute to weight gain. So that’s another great reason to put good sleep hygiene into practice especially if, like me, you have a soft spot for hot apple crumble and custard in the autumn!

Kind regards

Sarah Kate
NRAS

'Who stole the summer?' By Clare Jacklin

noreply@blogger.com (NRAS) — Fri, 21 Sep 2012 15:20:00 +0000

When I first joined NRAS, 5 years ago now, we used to experience a little lull over the summer holiday period which gave us all the opportunity to step back, take a breath and regroup. I so looked forward to that quiet few weeks during August but what happened to our respite this year? The lull never happened? The onslaught of emails and calls just didn’t let up! The office was as busy as always. There are so many organisations wishing to work with us on exciting and interesting projects that will all bear fruit in the long run for improving the lives of those living with RA but oh to have more hours in a day would be nice!
And what an autumn we have lined up already.

I will be representing NRAS at the IMID Summit in London next week. This is a gathering of 119 delegates representing patient groups from 22 countries from as far flung places as New Zealand, Brazil, Russia, Romania, Turkey etc. IMID stands for Immune Mediated Inflammatory Diseases so includes Psoriasis , Psoriatic Arthritis, Crohn’s & Colitis, Ankylosing spondylitis and Rheumatoid Arthritis – all diseases triggered by the immune system behaving badly! The two day summit will be an opportunity for all patient organisations to share common successes and issues, learn from each other as well as join forces where appropriate. I am very much looking forward to doing my Seb Co impersonation when I welcome all the delegates to London on behalf of the steering committee.

Next we have an information event in Dorchester on 3rd October, all from the area are very welcome. To find out more email volunteers@nras.org.uk.

We are all looking forward to seeing as many of you as possible at the NRAS Members’ day on Thursday October 11th in Taplow. Then I’m off to North Wales to a World Arthritis Day 12th October in Llandudno Junction Leisure Centre followed the next day with an event in the lovely city of York.
In addition we have lots of work going on to develop new sections on the website as well as new publications coming out next year.

Then before we know where we’re at it will be Christmas! Yes I said the “c” word! Have you order your NRAS Christmas cards yet? It’s never too early to start writing to those long lost aunties and wayward cousins so get your orders in now.

By the time I write again I will have directed an NRAS Potty Panto as part of a local charity fundraising event so watch out on YouTube in November for the video evidence that while we work hard on your behalf here in Maidenhead we also play hard too, all in the name of a good cause.

Clare Jacklin
Director of External Affairs

Is it time for another blog?!

noreply@blogger.com (NRAS) — Fri, 31 Aug 2012 08:56:00 +0000

Whenever I’m told it’s my turn to write the NRAS blog my mind goes blank and I can’t think of what to tell you all, so here goes...

It’s hard to believe that we are now at the end of August, with what little Summer we have had almost over, and are looking at settling ourselves in to the Autumn and wondering what the last quarter of the year holds for us. We’ve had the excitement of the Olympics, which having been a complete sceptic before they started, I ended up watching almost everything and getting excited about sports I had never even paid any attention to before! It was particularly exciting for me as my husband is heavily involved in rowing and ran the timing team at Eton Dorney so was well and truly ‘in the thick of it’ and very much part of the what I think most people have agreed was the greatest show on earth. And now we have the Paralympics to enjoy and revel at the amazing determination our athletes have to succeed, whatever the odds. Leigh Walmsley, a paralympic archer, is competing for Team GB and is a great supporter of NRAS, having lived with RA for 13 years. We wish her every success in her quest for a medal and will be watching her compete on the 1st and 5th September so if you are watching do cheer her on or send her a good luck tweet to Twitter@auberginearcher. My husband will be in the finish tower at Eton Dorney again for the Paralympic rowing so I am looking forward to hearing all about it when he finally returns at the end of the weekend.

But once the Paralympic entertainment is over there will still be lots to keep us busy here at NRAS. September and October are some of our busiest months with runners taking part in the Great North Run, Royal Parks Half Marathon and the Great South Run – a total of 34 runners. We are, as ever, so grateful to all those people who take on such a great challenge to support us and will be cheering them all on as they pound the streets in Newcastle, London and Southsea. We’ve also got a team of 3 people setting off on the Lands End to John O’Groats cycle ride in early September so we hope the weather will be kind to them and speed them along. Without the support of people like these we would not be able to continue to support all those who live with RA so a big thank you to them all.

For those of you who are not able to undertake such physical challenges, or quite sensibly choose not to(!),don’t forget to take part in the NRAS Online Quiz. This month you could win a signed copy of a John Bishop DVD as well as have the chance to win a weekend for two at the Harte and Garter Hotel in Windsor in our grand draw at the end of the year. Just go to www.justgiving.org.uk/nrasq..., pay your £2 entry fee and get your thinking caps on! Also, watch this space for news on our new knitting challenge which we are currently putting together and hope that lots of you will take part in.

In the meantime, I seem to have managed to thinks of something to say to you all so a very happy weekend and don’t forget to cheer on Leigh and her arrows.

Tracey

New Kid on the Block!

noreply@blogger.com (NRAS) — Fri, 24 Aug 2012 15:29:00 +0000

Hello Everyone

I’m Kim and I’m writing this as I finish my third week here at NRAS! I have joined the Volunteer Network team as Co-ordinator and I am excited about taking on this new challenge as my career takes a new path...

I worked at my previous company from the age of 17 for four years, starting as an apprentice, gaining a qualification and working my way up to being a fully fledged employee as the company Administrator and becoming the centre contact for everyone in the company.

Coming out of that job, I wanted to bring my admin skills to a new role, something more challenging and different. That is where I found the job advert for NRAS. The company name didn’t mean anything to me to begin with, but when I looked it up online and found out what the company did, it really pushed me to apply, as I felt it would be amazing to be part of company that does so much good.

Until about a year ago I, like a lot of people, had only really heard about and associated Arthritis with the older generation. My partner had started talking about having a lot of pain in his hands, particularly his right index finger, over a few months it got worse, it became very inflamed and he became barely able to bend it and lost a lot of grip in his hands. After I pushed him to see his doctor, and many appointments and tests later, he was diagnosed with Psoriatic Arthritis. So I felt that coming here with my small amount of experience of living with someone with a type of inflammatory arthritis, would help me have some understanding and be able to help make a difference here.

In my three short weeks of working here, I feel that I have learnt so much about RA and how people feel. Mostly that it is so misunderstood by their peers and family; this has made me really evaluate how I have handled situations in the past with my partner and how sensitive I have been to how he was feeling. I think now I can be and continue to become much more aware of these things and just be more caring.

I really look forward to my career here at NRAS and I feel truly grateful that I am part of such a wonderful charity. I am going to start getting out and about at new NRAS Group launches and meetings and can’t wait to start meeting the people we help and hope to make a difference. So if any of you attend these and spot me, then please come and introduce yourself as I will love to meet you.

On a completely random note, here is a picture of my kitten that I can’t wait to get in 5
weeks!

Happy August bank holiday weekend to you all!

Kim
Volunteer Network Co-ordinator