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A look back at 2021

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Category: General Information

Published on Thursday, 20 January 2022 12:08

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A look back to 2021

2021 was another challenging year for not only the charity, but also everyone in society as the pandemic continued to play a big part in people’s lives. For the first part of the year during lockdown, staff were working from home full time, before rule changes meant that we could get blended working options with some days in the office.

Lockdown impact 

The year was challenging with regards to resources. We took a conservative approach with the restrictions, and this meant that volunteers did not come into the office over Covid. Less people being in the office meant we had less time to make up and send out information packs to people who enquired about the condition.  Despite this, we managed to pack up and send out information resources to 1,622 people across the UK. This was a 70% increase on the number sent out in 2020, with understandably a lot more people requesting resources by post.  

Additionally, we worked on making our information resources easier to access online at www.fmauk.org/publications in more formats which resulted in them being downloaded and accessed more frequently.  

During the year, we also got both of our Employee and Employers booklets to print, and these are now available to be requested as physical copies, as well as to view online. These have proved very popular since release and we have received lots of positive feedback from both employers and employees.  

All our resources that we provide and send out are free of charge, including the postage. It is only from donations and fundraising that we can provide this informative service to those affected by fibromyalgia. As always, any donations are greatly appreciated.  

Research 

We took the opportunity to reform our research process so that it was easier to manage the requests and sharing of the studies within our community. We had a busy year with many people approaching us to facilitate their research – ranging from undergraduate students to PHD’s and larger funded studies. We helped as stakeholders in studies involving or from Versus Arthritis, Aberdeen Epidemiology as well as PaCFIND and others. Many of our followers participated in this research which helps increase the knowledge we have of our condition and the approaches to helping those with it. Our process allows us to track from creation, through publication and then sharing the conclusions from the studies to allow our community to see what their input contributed to.  

We will continue to share all research requests that we receive whether they are biological or psychological, whether they are undergraduate or NIHR funded projects. It is for those within our community to decide whether the research is worth their time to participate in and our aims are not only to increase the scope of our knowledge of fibromyalgia but also to support and grow the community of researchers that want to work on our condition and help our community. We hope to start funding focused PhD research student(s) as soon as we are able to formulate a process and criteria.  

Facebook Support Group  

In 2021, we launched a private support group on Facebook to allow people to ask questions, have discussions and get to know others with the condition. Since launching, we are quickly approaching 3,500 people and continues to be a busy community with daily interactions between people seeking advice and help on all manner of topics. It can be found at https://www.facebook.com/groups/fibroaction   

Fundraising 

Throughout the year, people took on various fundraising challenges for the charity. Ranging from quizzes to fundraising walks, the efforts of everyone who organised an event in aide of FMA UK are extremely appreciated by all at the charity. Some highlights from the year include the following: 

- The restrictions due to the pandemic slowly eased over the year (only to be reintroduced again in parts of the UK) and events of mass participation were gradually reintroduced. 

- We had our biggest London Marathon team ever: 5 runners took part in the live race and 3 in the virtual event – raising just under £6,000 between them 

- Successful corporate partnership with Superior Wellness -they taken part in fundraising events and also donate from their sales of hot tubs. – raised just over £4500 by the end of 2021. 

- SME Midlands and South Wales Real Estate Team – Lloyds Bank charity walk raised just over £9500 

- We took steps to increase the numbers of gamers, with our “Gaming for good” campaign which ran just before awareness week. This saw online gamers completing streams whilst raising money for the charity.  

A word from FMA UK chair, Des Quinn  

Immediately prior to Covid we moved into a larger office with plans to reflect on growing the charity. Lockdown led us to adopt a conservative approach and our charity now still must take advantage of our new situation, but our finances are healthy and worries of the charities continued existence, or an uncertain future are thankfully not a concern for FMA UK unlike other charities in our sector. We have a reduced headcount of 2.25 FTEs but will be actively looking to take on new staff as normality resumes with several areas identified for the charity to expand its efforts and services. 

As chair over this period, it has been a struggle to manage the changing work practices, conditions, and newly required workflows for our new working environment. While I am a volunteer my role is required to be executive in nature and in reality, I operate as an additional member of staff. My own health (vision issues rather than fibro) has meant I am less able to flex and help and this is a challenge that impacts on our operation and presents an additional hurdle for us to manage. 

FMA UK, needs to recruit new trustees to lend their point of view, experience, and skills to benefit the charity and our vision. In addition to additional trustees, new staff and volunteer roles we want to establish a Patient Council to have a group of advocates that will participate with their views from a community perspective and help give an additional focus for the charity.  

At present that charity is faced with mounting opportunities, more partnerships than ever, an expanding vision and a financial footing that can help us make a larger impact and a difference. But we will need the right skills and motivated people whether they be volunteers or staff members. We plan to speak to the community and ask you what we should be doing. With a budget of 10 – 15 thousand pounds what would you do to make a difference in our community? 

2021 and the previous year was all about surviving in a fragile and changing landscape, but the hope is that 2022 is a time for expansion and new projects. Covid is changing people’s understanding of the origin and veracity our symptoms and there will no doubt be more people diagnosed with fibromyalgia in the coming months and years as a result. There will be more people needing our support. 

If you think you can make a difference, have a plan with or without a budget, and think you can work with us then please do get in touch.