How has Fibro Active and the Fibromyalgia community gained from the Queen’s Award?

Written by: Julie Barker - Chairperson Fibro Active

In this article we will be looking at how gaining the Queen’s Award has made Fibromyalgia and CFS/ME more credible.

It’s been 18 months since it was announced that we were successful in gaining the Queen’s Award for Voluntary Service. Furthermore, we were told that this accolade would elevate us to the ‘next level’, which it has done in ways we were not expecting. In the previous article we took you through the preparation of organising the presentation and hopefully you have had chance to see the recording of the event on our website.

I still haven’t grasped the enormity of the award. I’ve had to justify the quality of work we do and compare against other national standards which I gained for volunteer projects, I put all those good practices together when I first set up the group.

Establishing a brand

It took a good 3 to 4 years of constant advertising and marketing for Fibro Active to build a name and a brand in the local community. We realised that we were starting to be recognised when either my or the group’s URL was copied into recommendation posts on Facebook.

Street Cred

Back in June 2020, after we announced we would be receiving the award, we were featured in Dr Lam’s Tai Chi for Health Institute newsletter and we were asked to write an article for a Tai Chi magazine, that sadly, wasn’t published, probably due to lock down. We couldn’t have chosen a worse year to receive the Queen’s Award, however, the good news spread globally throughout tai chi circles and I was also interviewed on our local news channel and this too is featured on our website.

The Queen’s Award has made the group’s status credible. Local funding pots were offered to us! We gained small grants from the local Voluntary Action and Sport England to start up tai chi classes after lock down.

Tai Chi and Fibro

With regular practice, Tai Chi and Qigong exercises have a holistic benefit to keeping our mind and body as healthy as it can be within our personal limitations, with or without a chronic illness diagnosis. Having benefited from these exercises and sharing the benefits with other people in the community, Tai Chi is helping make Fibro and CFS/ME credible. Dr Lam’s Tai Chi for Arthritis gives people who are otherwise unable to exercise conventionally, a manageable starting point.

The group’s work and success has also elevated us in Tai Chi and Qigong circles. Dr Lam featured us in a bigger article in his newsletter and our other Tai Chi and Qigong school, the Deyin Institute, have asked us to give a presentation at the Chinese New Year Wellness Conference. The theme is how Tai chi and Qigong is benefiting Fibromyalgia and CFS/ME sufferers.

The more we attend tai chi gatherings, the more instructors and practitioners we find with Fibromyalgia; like us they too want others to benefit. I don’t think Fibro Active would have succeeded today without incorporating tai chi into our programme. Not just because of the benefits, but also the income from our community classes helps sustain the group.

Strictly No Falling

Moreover, we have been featured in the Age UK magazine. When we first started running classes for the community, we were approached by Jo Briggs the co-ordinator of the Strictly no Falling, Age UK, Derby and Derbyshire programme that umbrellas hundreds of chair-based exercise, tai chi, Otago and postural classes for people at risk of trips and falls.

Working in partnership with SNF (Strictly No Falling) has enabled us to reach out to more Fibro and CFS/ME sufferers from all over the UK and say, it is ok to move and improve your strength and balance.

Also, we were chosen as one of 15 classes to be part of a focus group for an independent audit undertaken by Nottingham University, to help identify the quality of work the SNF classes are providing, in order to support a new funding bid next spring. I think being endorsed by the Queen will help go towards it!

Erewash Borough Council

Looking back to when we first set up the group, our programme needed to be 60% exercise and 40% other. We were initially supported by Kev Hatton from Active Erewash, part of Erewash Borough Council. We have applied for EBC community grants and more recently we were funded to attend a British Health Qigong instructor course.

It’s quite hard to be featured in ‘EBC Today’, their magazine, however we have achieved this by thanking the council for their funding and showing the community what we are doing after qualifying as qigong instructors and extending our falls prevention programme. Surprisingly, we are being featured in the Spring edition with a write up of the Queens Award Presentation.

Being featured really does elevate your cause to the community; I get more feedback from people who see our monthly articles in the free magazine which comes through the letterbox than I do from social media. But to be featured in the local council magazine twice on the bounce will really expose our work in the community.

Fibromyalgia is recognised

Furthermore, the leader of Erewash Borough Council, Cllr Carol Hart and the Mayor of Erewash, Mrs Donna Briggs both attended the event. The following week we received a letter from the council to ask if they could come and talk to group members regarding a consultation for regenerating our local town centre. They want people with Fibromyalgia to have an input! They want our group members to be a focus group!

The group brought fibromites out of isolation and created a community; this community, still searching for credibility has now been recognised by the Queen and suddenly Fibromyalgia has a voice!

Holding our heads high

Some of us have been searching for credibility for over 30 years; now we have found it, what can we do with it? Is it the credibility we have been searching for? Maybe not but it’s a start. When the lady from the council joins us at our meeting, we will be able to hold our heads high and not be embarrassed for having an illness no one tries to understand. We can highlight the difficulties we have going shopping and socialising. The fact we need accessible toilets nearby and adequate disabled parking. Highlighting how we become over sensitised to smells, noise, lights and movement, plenty of seating, preferably undercover, to allow us a quick recharge, accessible entrances for those in wheel chairs or who are unable to navigate stairs. Not only do these points apply to us, but they are relevant to the rest of the disabled community.

A Global Voice

These small steps of recognition will cascade globally in newsletters and articles, they showcase the group and our work. They pass on ideas for others to take forward and in this global society, they can follow our website and social media platforms and connect from afar. Closer to home we can meet and connect with the sufferers around us, it highlights our partner organisations who have helped us deliver a professional programme, making a serious contribution to society which previously has been invisible.

However, we cannot become complacent. If we don’t keep shouting from the hill tops, we will return to being invisible. Fibromyalgia is a lifelong thing for us, however, those who haven’t got it will soon forget about it, if they are not reminded. So, the cycle of networking and advertising continues, our campaign for awareness doesn’t rest. Support for our members is our priority, achieving our aims and objectives is a huge part of this.

Taking our voice into 2022

2022 looks like another busy year with all our events; hopefully, keeping everything crossed, we are aiming to try again, with the Mothers’ Day Pamper Event, as previously this was booked to go ahead on the day of lock down. At the time of reading this article, we will have started advertising our ‘Walking to Awareness’ campaign which starts at the end of March. This year ‘Awareness Day’ falls conveniently on a Tuesday which is our usual meeting day, so watch this space as we could make it a little bit special!

Once again, this year we are theming the months for our programme delivery. In January we are looking at connecting with the community, we’re starting with our AGM and the consultation focus group; this will highlight our needs for access and support in the town centre. We will finish off the month looking at how we can reduce loneliness and isolation and the affect it has to us, on an emotional and physical level. On that note, we have just identified the subject for our next article.

Previous
Previous

What Does Healing Mean When You Have An Incurable Illness?

Next
Next

Can you learn more about FMS by observing the position of Planets?