Fibromyalgia is a chronic pain syndrome that affects at least 300,000 people in Scotland, so it’s likely that you know someone with the condition, if you’re lucky enough not to suffer yourself. Fibromyalgia is a thief; it steals your mobility, your cognitive abilities, your job, and your relationships to name but a few, and leaves you feeling an isolated shadow of your former self. FFU-Scotland are dedicated to improving the quality of life of sufferers in Scotland, but we can’t do that without your help.
FFU-Scotland CIC are a not for profit, social enterprise supporting fibromyalgia sufferers (fibromites) throughout Scotland to self-manage this incurable condition and improve their quality of life. We need a crew van to transport our members, volunteers and equipment out into the community to our public peripatetic information and support drop-ins across Ayrshire. This will allow us to raise awareness of the syndrome and provide relevant and accurate information/signposting to sufferers, care support professionals and the public alike. This early intervention strategy is to target people who are in the pre-diagnosis and diagnosis stages, where there are currently insufficient services. We will also be able to use the van to transport members and volunteers, as well as our handmade craft merchandise to craft fayres and other fundraising events, which helps us to be self-sustaining.
Making it Personal – Can you relate?
Fran had numerous pains growing up. Always to be told it was ‘growing pains‘. Bloods always were fine, yet as a teenager she started to have excruciating pains in her abdomen and having fallen onto the floor many times crying her GP finally advised it was IBS (Irritable bowel syndrome). Shortly after came bouts of fatigue. Not just tiredness but complete exhaustion, as she watched her friends manage all the nights out when all she wanted to do was sleep.
Plodding on over the years. Deficiencies and allergies were diagnosed and then chemical sensitivity; always feeling sick at sprays of deodorant or perfume, especially early in the day.
Fran had no idea what was going on but always felt different. The years brought the highest level of full body pain, toes that felt broken, headaches, electric shocks in her spine, memory issues, walking became sorer and the fatigue unrelenting.
Blood tests, scans, passing from specialist to specialist and still no answers. Nothing was showing for these severe symptoms that now were not only flare periods but constant daily impacts.
Physiotherapy commenced and stopped, medications tried and changed, why was Fran still feeling so unwell? Lost days at work, lost nights out and poor energy for her family. Fran became more isolated and depressed although she had people around. No-one seemed to understand.
Finally, Fran was told “It’s OK you aren’t going mad, you have a chronic complex condition called Fibromyalgia”, by a further specialist.
Some strange name but no idea what it meant. Left with no information, no network – just google that seemed daunting and somewhat unreliable. More days were lost at work in fact months. Bowel and bladder issues, eye pain, further overlapping conditions such osteoarthritis and hyper-mobility diagnosed to name but a few. Fran felt like her life was changing with something no one could see and couldn’t understand why. No-one cared.
Fran didn’t just decline in her health, but in her confidence; losing her job and affecting her social life, her mobility and friendships, she realised she had to learn ways to manage.
Along with a long-term condition doesn’t just come the insomnia, the medications and the low mood but, the fear of what else can happen, how do you accept and learn to manage?
Fran joined like-minded people with fibromyalgia online and at support meetings, and through supports like FFU Scotland began to learn to live again.
The pain was still horrific, the multiple symptoms still gathering, the mobility still causing falls at times, or nights of no sleep. However, she felt listened to, worthy, inspired and even empowered again to try and live life with Fibromyalgia no matter what.
There are many in Scotland like Fran. In fact, approximately 300,000, and not just women but many men too. All on different journeys with the syndrome but, all just as long and difficult.
People like Fran need correct information when diagnosed, someone to listen, advocacy, peer services and support meetings, and also places to ask their loved ones to learn about fibromyalgia and understand too which, is hugely important.
Helping with just a few pounds can help FFU volunteers to access people like Fran and her family in the community.
What We Are Trying To Achieve
Raising awareness and educating the public is crucial in understanding and support for fibromites and their care support, early information and advice when all seems a blur and no one to listen fully to how they are managing at the early stages and informed advice are central to FFU Scotland’s strategy. Having transport will allow wider access across Scotland to meet this need.
Being able to transport members and volunteers will also enable us to target more local, often housebound fibromites, getting them out and about through our peer support and advocacy, helping to raise their self-esteem and make them feel a valuable member of their community. Many of our members are socially isolated, having had to give up their job through ill-health, and this would allow us to get them more involved with our organisation, give them the opportunity to volunteer with us, gain new qualifications to upskill and show them that life doesn’t end with a fibromyalgia syndrome diagnosis.
Why You Should Support Us
FFU-Scotland CIC are a new, social enterprise company run by fibromites for the benefit of fibromites, both locally in Ayrshire and across Scotland. We currently provide monthly support group meetings in East Ayrshire and North Ayrshire, with plans expand into Glasgow in April 2018, followed by Inverclyde in the second part of year. Our aim is to provide monthly support meetings across all the regions in Scotland in the next few years. We are currently piloting a one to one peer support and advocacy service for struggling members who have fallen through the gaps in the current system and have been left isolated. We aim to appropriately train our volunteers and open this service initially across Ayrshire with Glasgow following late 2018/19 before providing this across all the regions in Scotland. FFU-Scotland is the first of its kind in the UK and we ultimately aim to ensure that everyone with fibromyalgia follows a similar pathway from pre-diagnosis through to aftercare, ending a ‘postcode lottery’ that is dependent on the knowledge and skills of individual healthcare providers.
Who We Are and Our Experience
FFU-Scotland CIC is run by three directors who have been diagnosed with fibromyalgia for many years. Alison McColl, our Managing Director is a trained social worker with many years of experience in children and families, disability and addiction; Frances Beck, our administration director is a trained secondary teacher with experience of running family business; and Kerri Nathwani, our Health and Training Director is a trained pharmacist. Together we have many skills that have brought FFU-Scotland forward from a small social media community organisation to a much needed up and coming enterprise and will continue to take the organisation forward.
FFU-Scotland is the brainchild of our managing director Alison McColl. Alison recognised the need for a support group for fibromyalgia sufferers and in 2014 started with a small handful of members local to North Ayrshire. Fibromyalgia is a chronic pain condition, which has a wide variety of symptoms and with no known cure, treatment of the condition requires a multi-modal, self-management approach. Fibromyalgia is thought to affect up to 6% of the population with at least 300,000 sufferers in Scotland alone. It soon became evident to Alison that there was a need for greater education and the raising of awareness of fibromyalgia and the organisation grew online and she started a monthly support meeting in Irvine in June 2015. The organisation soon became too large for her to run alone and she sought the help of like-minded people to assist her and in April 2017 the organisation became registered with Companies House as a community interest company (SC563212). We moved into our first office premises in November 2017 and currently have over 1300 members online. We are contacted by new fibromyalgia sufferers that have been signposted to us for support and advocacy on a daily basis, and this is before we are fully up and running. The need for our services is huge, but at the moment we don’t have the funding or capacity to help everyone. It has also become clearly evident that the need for education and awareness raising within health and social care is greater than ever. We want to ensure that every person going through the fibromyalgia pathway is provided with the same information and opportunity, regardless of the healthcare provider they are seeing.
How The Money Will Be Spent
The money raised will be used to buy a small crew cab van and insure it on the road for a year with breakdown cover and fuel and servicing to keep it running. We estimate that the van, such as a Ford Connect T220 Crew, will cost £6900; £500 for annual servicing, MOT and road tax; £450 for tyres, bulbs, wipers etc; £650 for insurance and Breakdown cover; and £1500 for fuel for a year. This money will enable us to transport our members to drop-in sessions, support meetings and craft fayres. It will also allow us to transport our merchandise to craft fayres and other fundraising events, where we sell our handmade crafts and other items that provides us with a sustainable source of income