Starting the National Rheumatoid Arthritis Society – Ailsa’s story

Today I am sharing my interview with Ailsa Bosworth, the CEO and founder of NRAS – The National Rheumatoid Arthritis Society which includes a little of her life story and  the reason she started the charity along with tips for women.

Rheumatoid Arthritis

 Describe your childhood and teenage years

I was born and grew up in a small village in Scotland to the west of Glasgow until I was between 7 and 8 when we came south to East Sheen because of a change in my father’s job. So my early childhood was full of freedom to roam the fields and the woods locally with other children from the village.

I am of an age where I remember dancing round the village maypole with coloured ribbons. On moving south, my ‘Glasgie accent’ gradually disappeared and after a couple of years, I went to Putney High School Junior School, graduated to the Senior School and left when I was sixteen after O-levels to attend a language school in Switzerland for a year. I came back fluent in French and with very good German.

I then attended St. James Secretarial College in London for a year to qualify in shorthand, business studies and book-keeping. As a teenager, I didn’t really know what I wanted to do and didn’t particularly want to go to university, so my parents made an excellent decision to send me to Switzerland to study languages (which I was good at) although I didn’t think so at the time!

What was your first job?

So, at the age of 18 and newly out of college I was ready to start my first job. This was as a bi-lingual secretary with the Bata Shoe Organisation. I enjoyed this role, travelled with the organisation and used my French extensively. I stayed with them until I was 20-21 and then started searching for something that could become a ‘career’.

Please tell us about your health challenges

My father had Ankylosing Spondylitis from before I was born and was very ill for most of his adult life, dying early as a consequence of his disease and drug side effects of a stroke at age 62. I started experiencing problems with joints in my late twenties and it’s not clear even now whether this was the very early stages of Rheumatoid Arthritis or the result of a fall down some stairs. When I was 30 I started experiencing a painful and swollen right knee. I did not connect what I was experiencing with my father’s disease, nor with Rheumatoid Arthritis which I probably wasn’t even aware of. It was nine months before things got so bad that I was forced by my boss to see a doctor, and Rheumatoid Arthritis was diagnosed immediately resulting in being hospitalised. Thus began my journey with this horrendous disease.

In the early 80’s the drugs we have today were not available and the way in which treatment of the disease was tackled by health professionals was very different. As a consequence I experienced a huge amount of irreversible joint damage which has led to my having (so far) 19 operations including 2 operations to my eyes. It started in my eyes in the last 10-15 years. I’ve had a foot fusion, both ankles replaced, both knees, both hips, my wrists are fused with metal rods, both elbows and 2 operations to partially fuse my neck which restricts my ability to turn my head.

The disease affects every single aspect of your life. The main symptoms are pain, which at times can be unbearable, even to someone like me who has developed a high pain threshold, fatigue and stiffness. The disease halted briefly whilst I was pregnant and when my daughter was born in 1982, it migrated from my right knee to many other joints including my hands. At times I was unable to pick up my newborn daughter or change her nappy.

I went back to work when Anna was 3 months old, part time initially but by one year, I was back full time. I had a good job by then and had reached Director level in the company I worked for so was in the fortunate position of being able to employ a nanny and enjoy a level of autonomy, supported by a fantastic boss, who, in spite of my disease and having to attend hospital frequently, believed in me and enabled me to do this without penalty.

It took a long time to go through a grieving process for the life I would never get back and to accept that I was ‘disabled’. In my mind, I didn’t feel disabled. I used to ride bikes, play tennis, dance, water ski, snow ski and was generally very active. I quite quickly had to come to terms with giving all of these things up although I have never fully come to terms with the fact I can’t even go for a long walk.

There have been many occasions when I have been subsumed in tears, many times a flare has become so bad that my husband has had to call an ambulance, and many times of being in low moods and being terrified of impending surgery or what was coming next. It has impacted on relationships, although in many ways it has made the bond with my husband and wider family even stronger. For many, many years I have felt guilt (for being less than independent and having to rely on others), there is also stigma attached to having a long term condition, as if you are somehow ‘different’. You feel sad for the things you have lost and at times inadequate and wretched.

However, out of adversity often comes other benefits and strengths and so this has been for me. Living with Rheumatoid Arthritis has undoubtedly given me the ability to empathise more with others who have long term conditions and with people who have their lives restricted in some way.

Who has supported you most?

My husband Brian has without doubt been my rock. He thought long and hard about taking me, my 3 ½ year old daughter and my Rheumatoid Arthritis on but thank goodness he did! I seriously don’t know what I would have done without him and had I not re-married, my life as a single mother and later as a ‘single’ person would have been immeasurably different and less comfortable.

My daughter, like me with my father, has only ever known a mother ‘with RA’. One of the benefits of this, although she may not fully realise it, is that she learned to be resilient. When you get knocked over, you get right back up again and carry on. I think that teaching your children to be resilient is one of the most important things a parent can do. My daughter is now, at age 36, also incredibly supportive and we have a close and strong relationship. Wider friends and family and also my staff in NRAS are also incredibly supportive and practically helpful when I need it.

My heart always goes out to people with this painful disease who live on their own. It is quite isolating and awful if you can’t even get out of bed to make yourself a cup of tea when you are having a flare. Having a partner who is there for you and can do the cooking/shopping and just ‘do stuff’ makes the world of difference.

I haven’t really had experience of getting help from another charity before I set up NRAS and this was one of the reasons for doing just that.

What do you do now?

I am the founder and CEO of the National Rheumatoid Arthritis Society. I started work on the creation of NRAS at the beginning of 2001 following the experience of being on a clinical trial for a new drug which, for the first time in many years, had an impact on my disease and I was then unable to get access to the drug after the trial. I started with a blank piece of paper, we launched in October 2001 and we now employ 24 staff and enjoy a high, international reputation in the field of rheumatology. I had the honour of being awarded an MBE for services to people with RA in the 2016 new year’s honours.

Tell us about the services and campaigns of NRAS

The National Rheumatoid Arthritis Society (NRAS), is the only patient-led organisation in the UK specialising in rheumatoid arthritis (RA) and juvenile idiopathic arthritis (JIA). Due to its targeted focus on RA and JIA, NRAS provides truly expert and wide-ranging services to support, educate and campaign for people living with these complex autoimmune conditions, their families and the health professionals who treat them.

Their vision is to support all with RA or JIA to live life to the full with an underpinning mission to:

  • support everyone living with the impact of RA or JIA at the start and every step of their journey
  • to inform – be their first choice for reliable information, and
  • empower all to have a voice and take control of their RA or JIA

We provide wide ranging services including a free helpline, peer support service, on line and social media platforms for peer support and social networking, informative websites for RA and JIA, policy and public affairs campaigns and activities in all four nations of the UK, many publications available in hard or soft copy, and other support services including supported self-management programmes. We have approaching 50 community groups across the UK which provide a local forum for education and peer support. Everything we do as an organisation is about supporting people to understand their disease as best they can so that they can learn to self-manage as well as possible. We know that those who proactively self-manage effectively have better long-term outcomes. We support UK clinical and academic research and conduct our own social research. We also run training programmes for health professionals. We are involved in the setting of national standards and guidelines (through NICE and the British Society for Rheumatology) and I have been the principal expert patient for all NICE health technology appraisals (the process by which new and innovative drugs come to market in the UK) since 2003.

One of our most recent programmes launched in February is an interactive video programme, Love Your Heart. The interactive video programme is an engaging, educational platform, where people who register (free) will be able to:

    • understand the reasons why RA increases cardiovascular (CVD) risk
    • calculate a QRISK®2 score (a GP recognised prediction algorithm for CVD)
    • learn how to reduce the risk of CVD
    • log progress through a series of behavioural goals

 

Please share your tips for a woman thinking of starting a charity

Be prepared to work harder than you’ve probably ever worked before and make a lot of sacrifices in terms of work/life balance. (My husband and family are used to coming second to NRAS!). If you haven’t got a bucket load of passion for your cause, don’t even start!

Do you have any words of wisdom for a woman facing health challenges

Be kind to yourself. Forgive your body. Always have something to look forward to. Ask for and accept help. People actually like being asked for help, it makes them feel good about themselves. Took me a long time to learn that. Don’t shut your nearest and dearest out, try and talk about how you feel.

Please recommend a book for a woman to read

The memoirs of Dame Stephanie Shirley. She is an amazing woman who really pioneered getting women into the workplace in technical jobs, whilst struggling to bring up a very autistic son.

What website would you advise a woman to check out?

I honestly don’t know the answer to this. The websites I use are all very practical for ordering things.

I struggle with the idea that Amazon probably don’t pay enough corporation tax, but the practicality of being able to order almost anything you want/need from them with minimal clicks and fuss, makes my life easier! So, in the absence of anything particularly ‘women’ focussed, it would have to be Amazon!

Is there anything else you would like to say?

I would just have to finish by saying that setting up and running NRAS has been the most rewarding work of my life. It is humbling and moving to know that you are changing people’s lives for the better and although I have had a challenging and rewarding career in engineering, computers and the audio visual industry in the past, it is the work of NRAS and the support of my family and colleagues that has inspired me and causes me to think almost daily how much I love my life.

https://www.nras.org.uk/

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If you would like to share your story on this blog please get in touch.

 

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4 Comments

  1. Rebecca Beesley March 27, 2018 / 8:12 am

    It’s great to read more of ailsa’s story. Richard met with her recently relating to the work he is doing with jia. She is truly an incredible and inspirational woman. I can’t even begin to imagine the strength it takes to go through all that surgery – having just one hip replaced because of my own arthritis has been challenging enough! Thank you for featuring Ailsa and her amazing work – there is still a huge job to be done in continuing to raise awareness of both JIA and the reality of living with arthritis and stories like this really help people to understand.

  2. Jaki April 1, 2018 / 9:46 pm

    It’s always inspiring to read stories like these. Thanks for sharing with #TriumphantTales.

  3. Sarah April 4, 2018 / 8:26 pm

    What an inspiring read and story. Thanks for sharing this with #thursdayteam

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