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/

Sharing so openly takes a huge amount of courage so please do consider sharing this post by clicking one or more of the buttons below.

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

 

Confessions of a New Mummy

Winnettes
My Random Musings

Christmas goodwill is my favourite part of the festive season outside my own family celebrations. I love how everyone gives their time and attention in a more generous-spirited way. I see people reaching out to help others and more forgiveness too. I love how  charities benefit from unexpected donations at this time of year. I asked bloggers to share times when such goodwill made a big difference to their lives.

“My friends doing the pick up and the drop of the my kids when I am in need. They are such stars. I will never forget” www.ethannevelyn.com

 

Whisky Cocktail Recipe

“I worked in America doing door to door sales one summer when I was at Uni. I hated it. One day it was wet and I was so miserable. Some people found me, took me to a local church for a coffee, to warm up and gave me some money too” Counting to Ten
Campari And Gin Cocktail

“My friend travelled down from North London (about 1,5-2 hour journey) to help me just after I miscarried. She knew I had no family nearby, so she took time out on her only day off to come and help out. She brought healthy food, treats, some pampering products and took my toddler to the playground for an hour. It meant a lot and helped me tremendously.” https://www.scandimummy.com

 

 

Mulled Cider


“When my husband was in hospital post heart transplant, a gentleman in the next ward was due to go home. He left £150 by my husband’s bedside whilst he slept with a little note that read – Hopefully you will be out in time for Christmas” Sticky Mud and Belly Laughs – A Family Lifestyle Blog
Christmas Pudding Spiced
“A couple of blogger friends sent me a parcel filled with chocolate to cheer me up through a hard time recently. It really did mean the world to me that I was in their thoughts despite us living so far apart” www.fivelittledoves.com
Mulled Apple
“I had breast surgery in January to remove a Cancerous lump, 2 days after my youngest son had surgery to widen his wind pipe & remove tonsils.
It was a super difficult time for us & I cannot tell you how incredible my friends were” Our Mummy Life Homepage
Christmas DoughNuts Recipe

A friend gave me some direct and solid advice about knowing my worth and as a result, I put up my rates which has enabled me to work a little less. By sharing what they knew and being honest they have made a huge difference to my workload and wellbeing” https://www.babybudgeting.co.uk

 

 

Gin Fizz Cocktail

“My aunt has always been there for me especially at times when I need her most. She didn’t get tired of helping me even if everyone else thinks that I am the one to blame for all the bad things in my life. She never quit on me. Since then I valued the bond and relationships to family members more than any material thing in the world” http://myparentingjourney.com/
Non-Acoholic Drink
These are lovely examples and the giver probably did not quite realise what a big difference they were making. Do you have your own examples of Christmas goodwill?
 

Helping poor families at Christmas really gives a sense of that idea of goodwill to all during the festive season. We can try to help and get a feel good factor from doing so or like Scrooge before he became enlightened we can turn out backs on those who need just a little help. Does helping poor families at Christmas matter to you as you make your festive preparations?
Helping Poorer Families at Christmas
Stress at Christmas is common and particularly where a family has struggles whether financial or emotional.

Helping poor families at Christmas

I wanted to let you know about the Big Give Christmas Challenge – the UK’s biggest online match funding campaign.Every donation (up to £7,000) that my partner charity School-Home Support receive between noon on the 28th November and noon on the 5th of December will be matched by generous champions, including our friends at the Childhood Trust. This means that all of your donations are doubled, allowing the charity to reach twice as many families living in poverty. Today, four million children in the UK (an average of nine in every classroom) live in poverty, so there’s a lot of work to do!

Poverty in the UK

Living in poverty often means things your family take for granted like housing, food are unsuitable for children growing up. Many families cannot manage to afford school uniform and equipment to help with children’s education.  Milestones like growth that should be celebrated add yet more burdens as shoes are needed and extra-curricular activities that help a child to develop cannot be accessed.

Thankfully, this is where the School-Home Support Welfare Fund comes in.

Case-studies

James’ mum, Moji, was a motivated person who studied at University, before suffering leg and back injuries and subsequent deep depression. Unable to walk, let alone work, Moji and her children – James and his sister Favour – were living in poverty, housed in temporary accommodation (in a top floor flat with no lift, so she was unable to leave home for months at a time) with no proper furniture or clothing.
SHS Practitioner, Sevgi, realised that the family were in need of support. She used the SHS Welfare Fund to buy the children school uniforms and bags, proper beds to sleep in, transport to get to school, and items to make the home more accessible for Moji’s disability. Sevgi also helped the family to get rehoused in a more suitable accommodation and to access the benefits they were entitled to.
Sevgi and Moji’s hard work has paid off. James recently won a scholarship to attend football college and is on track to becoming a professional footballer. Sevgi has empowered Moji, so that going forwards she feels strong enough to find resolutions for the family herself. She recently applied for a scholarship for Favour to attend a private secondary school with board, as she’s doing very well at primary school.
Jackie lives with her four adult children and three grandchildren, Cameron, 12, Curtis, 11, and Kodi, 9.  Cameron, Curtis and Kodi were removed from their parents’ care after witnessing years of domestic violence, and the impact of this violence, as well as other issues including their grandmother’s alcoholism, meant that the boys had serious problems at school. Their attendance was low, their behaviour was poor and both police and social services were regularly involved with the family.
Our ‘Troubled Families’ senior practitioner Sam has helped to turn things around. Previously, the boys had tatty and incomplete school uniforms which singled them out for bullying. The SHS Welfare Fund was used to buy new uniforms which has boosted their self-esteem, and Sam visited their home each morning for a week to get them into a morning school routine. Within 12 weeks the boys’ attendance at school had dramatically improved. School attendance for all three boys is now 95%.
The boys’ behaviour at school was also a serious cause for concern with Cameron, the eldest, was being repeatedly excluded from his secondary school for violent behaviour. Sam spoke to the school and arranged for the boys to have mentors assigned, and also enrolled them on a course supporting children who have witnessed domestic violence. The programme has benefitted them enormously and their behaviour is now much improved.
Finally, Sam worked to build Jackie’s resilience so she could effectively parent the boys. She has given up drinking, has taken on some psychological support and now works as a midday assistant at a local primary school.
The police and social services haven’t been involved with the family since they met Sam.
Does helping poor families at Christmas matter to you? How do you go about supporting them?

Winnettes
Mummascribbles
Cuddle Fairy
Mum Muddling Through
The Pramshed
Post Comment Love

Have you heard about UNICEF’s sanitation projects?
UNICEFS Sanitation Projects
Let me ask you a personal question. Have you used a loo today? Did you feel blessed or did you take it for granted. Take a look at this quiz and it is great because the answers are included. Then pop along to the supermarket and buy a special bottle of Domestos and help UNICEF’s sanitation projects.

How many people across the world do you think are estimated to live without access to a proper toilet?

1 billion
460 million
2.5 billion
Answer: c. 2.5 billion#

Therese Dooley, UNICEF Senior Sanitation and Hygiene Programme Advisor says, “It’s unthinkable that 37% of the world’s population don’t have access to a proper toilet.# And when I say a proper toilet, I’m not necessarily saying that everyone has to have a nice bathroom with a flushing toilet. I just mean some place that is safe to dispose of your faeces, some place that will keep the faeces from getting into the living environment, some place that will stop children getting sick.” Diarrhoea is the second leading cause of death in children under five globally, accounting for 15% of mortalities. 88% of these are due to poor sanitation with 36% directly linked to not having a toilet.”#

Which of the following do you think contains more germs?

Adult poo
Children’s poo
They both contain the same
Answer: b. Children’s poo.

Therese Dooley, UNICEF Senior Sanitation and Hygiene Programme Advisor says, “Many people do not consider a child’s faeces to be as dangerous as that of an adult. However this is untrue. Children’s faeces actually contain many more germs. Even in our own homes we often change a nappy without the strict hygiene concerns we would have with adult faeces. In the developing world children are often allowed to defecate in the surrounding household environment and it’s not considered dangerous because the family consider a child’s faeces to be safer.”

What do you think is the main cause of so many people lacking access to a toilet?

People are not aware of the link between poor sanitation and poor health so do not understand how a toilet can prevent potentially life threatening diseases
Lack of money and resources to build toilets
Both
Answer: C. Both.

Therese Dooley, UNICEF Senior Sanitation and Hygiene Programme Advisor says, “A mum in the developed world doesn’t even have to think about protecting her child from faeces because her home has access to water based systems in that when anyone flushes the toilet – waste is just gone. But in the developing world, the environment in which you’re living has a lot of faeces – animal and human. However, it’s often the case that mothers are unaware of the link between faeces and their child’s health. They don’t realise that germs from faeces can reach their child and cause her child to have diarrhoea. If they did, they would jump at the chance of removing that danger and would do something about it. Through CATS we’re not telling communities what they should do to improve sanitation; we’re stimulating the realisation of the link between hygiene in the home and elimination of open defecation to improved health.” Money and resources can also be a major barrier to improved sanitation.

Where in the toilet are most germs found?

Toilet seats
In the toilet water
Under the toilet rim
Answer: Under the toilet rim

Carolyn Jones, Unilever Global Expertise & Authority Manager, says, “The toilet is considered to be one of the biggest germ threats in the bathroom, and the highest number of bacteria are found in the toilet under the rim. However, any surface that people come into contact with will affect them. Germs can fly up to two metres from the toilet with every flush and those germs can re-contaminate bathroom surfaces like the seat and flush handle. It is a good hygiene practice to keep the toilet, and all contact sites clean on a regular basis.

Domestos is one of the world’s best-selling, most effective germ killers. Domestos is a thick bleach product has the most effective chemical compound able to kill all types of germs, including all known bacteria, viruses and fungi.”

What is the likelihood of your child getting sick from touching unhygienic surfaces in the bathroom?

3%
45%
Unknown
Answer: Unknown

Carolyn Jones, Unilever Global Expertise & Authority Manager, says, “We can’t put a figure on the chances of your child getting sick, but we can advise you on how to prevent it happening. One study has shown that children touch surfaces and then touch their mouths 81 times per hour – one of the most common ways for germs to enter the body. To prevent your kids getting sick it is important to keep surfaces clean and regularly use germ-kill toilet bleach products, such as Domestos.”

How long can germs survive in the toilet?

Ten minutes
A week
Indefinitely
Answer: Indefinitely

Carolyn Jones, Unilever Global Expertise & Authority Manager, says, “In theory, germs could survive forever if they didn’t come into contact with a germ killing agent such as Domestos. In one study, scientists found Salmonella germs in the toilet one month after the family had been sick.# This isn’t hard to believe when you know that one germ can multiply to two million germs in just seven hours. Using Domestos on a regular basis helps destroy these germs.”

On average, how many bacteria are there in poo?

100
1,000,000
1,000,000,000,000
Answer: 1,000,000,000,000

Carolyn Jones, Unilever Global Expertise & Authority Manager, says, “Bacteria make up one third of the weight of an average human stool – that’s about a thousand billion bacteria. Of course, not all these bacteria pose a serious risk to your family’s health, but of the several hundred species of bacteria found in human excreta can cause diseases, including Salmonella spp, Enterococcus faecalis and Staphyylococcus aureus. Even if 99.9% of the germs in the toilet are washed away when you flush, that can still leave several billion in the toilet with the potential to make your family sick. Regular use of Domestos bleach destroys these germs, helping protect your family from the diseases they cause.#”

www.domestosforunicef.com

Will you support UNICEF’s sanitation projects?

You might also want to sign up to Give As You Live here http://www.give.as/savingbabieslives so that every time you shop online, the retailers can donate a percentage of what you spend to a good cause like UNICEF.

What charity do you support?

I am promoting charities and good causes for free on my blog during June 2012.

Here is an introduction to the work of the Forget Me Not Children’s Hospice.

 

The Forget Me Not Children’s Hospice in Huddersfield supports children with life limiting conditions and their families. The charity began more than 12 years ago as a result of the challenges of a local mum whose son, Russell, became very ill and needed hospice care. She was concerned at the lack of local support, and set about changing this.

 

12 years on The Forget Me Not Children’s Hospice is now a reality. In October 2010 the charity began supporting children and families through its hospice at home service. To date we have received more than 60 referrals, and we are already helping over 40 children and their families, with more coming to us every week. In October 2011 the hospice building was completed.

 

The care provided by a children’s hospice is unique. All of the children we help will have conditions which will, sadly, significantly shorten their lives. However we may support children and their families for many years, possibly until the child is a teenager or even a young adult.

 

We know that when a child has a life limiting condition they still have the same needs as all children – the need to play, to communicate, to experience new things, to learn and to reach their full potential, whatever that may be for them. Our focus is to do everything we can to make children happier and more fulfilled while they are with us, however long or short that may be. Despite the common perception, a children’s hospice is much more about life than it is about death – and any visitors will find fun, noise and laughter in a building which is designed to feel like a large, welcoming home.

 

As well as helping the child we also provide support for the whole family. Caring for a child with a life limiting condition places immense strain on parents, siblings, grandparents and other family members. We give parents a break, and help them become parents instead of full time carers. We give support and attention to siblings who are dealing with all the issues of having a brother or sister who get all the attention but who won’t always be with them. We support families through bereavement counselling, relationship guidance, and general emotional support while they are caring for their child and often for years afterwards.

 

There is no charge for the care and support we bring to children and families. As less than 4% of our funding comes from government sources we must work hard to raise funds to enable us to care for those who need us. As we open the hospice and continue our hospice at home service we must increase our income from £1million per annum last year, to £2.5 million per annum over the next 18 months.

 

We love to hear from people who are able to fundraise for us in any way. Please get in contact if you want support, ideas or information on 01422 411046