by Jann Landles, Hon Secretary, Vasculitis UK
In the European Union, a disease is defined as rare when it affects less than 1 in 2000 people. The European Commission defines rare diseases as ‘life-threatening or chronically debilitating diseases which are of such low prevalence that special combined efforts are needed to address them’. With 15 systemic vasculitis disease phenotypes and several subsets, some of these diseases being very rare but not all of them life threating, you can begin to image the issues facing Vasculitis UK.
Like many small charities, Vasculitis UK was created by relatives in response to the loss of a loved one, and running a national charity to support people with a vasculitis condition in the years before the internet proved difficult. The trustees of Vasculitis UK looked at what issues they needed to tackle and the funds they had to tackle them with and realised that to achieve progress would require significant input by themselves and other willing volunteers.
From feedback from members and their families, one of the first issues to be tackled was the provision of reliable information. In common with many patients when finding they have a chronic, incurable disease, they look for further clarification. What they found was often out of date and caused great alarm rather than reassurance. Vasculitis UK set out to address this information gap.
With the help of some IT specialists, the trustees worked with vasculitis specialists to build a body of accurate and current information that can be easily read by patients and non-specialist staff, and then made it available both through the web but also in printed material. The production of this information (the Route Map for Vasculitis) involved several trustees and six months for one acting as the editor in a full-time commitment.
I joined the trustees of Vasculitis UK in 2012 after being diagnosed and treated for Granulomatosis with Polyangiitis while this labour of love was still in progress. Following the example of my fellow trustees I also got involved working at an operational level. My initial task was to propose a revamp of the telephony used for the Help Line. This has proved a successful initiative and VUK trustees man the help line from their homes nationwide on a rotational basis, responding to enquiries on a wide range of topics such as seeking a referral for a second opinion or accessing benefits.
For a while I also managed the fundraisers on behalf of the organisation. Like many other charities, Vasculitis UK is entirely unfunded and relies entirely on donations from supporters. The fundraiser management role is time consuming but it is time well spent as vasculitis patients and their friends and family work very hard to support our objectives. With increasing numbers of people undertaking sponsored events on our behalf, it has become necessary for Vasculitis UK to have several of us take an active role to ensure we process it all and take the time to thank everyone.
While looking for opportunities to raise awareness of the condition, we identified that we needed the support of a larger, more inclusive organisation. ARMA provided the framework and opportunities to network with other organisations with similar aims and issues. Having represented Vasculitis UK at Policy meetings, and seeing the value the organisation offered, including access to larger wider range of resources that would not normally be available to a smaller charity run by volunteers, I decided to run for a trustee post with ARMA. I hope in the role of ARMA trustee I can work with the small charities and help them represent their interests.
Being a small charity requires that we multi-task. This year, for the first time, Vasculitis UK joined other ARMA members in the ARMA village at the Rheumatology conference in Liverpool. This was our first conference; it was undertaken to raise awareness of the charity and Vasculitis conditions; it was organised and manned by trustees. Even the Chairman has several roles, including acting as a patient representative on a number of national and international bodies that review treatment and guidelines, such as EUVAS and the Specialised Services Clinical Reference Group.
So why do we do it? Why are we both chief cooks and bottle washers? Well, it is easy for us to recall the lack of information available to us when we were told of our conditions, not so long ago. And now our progress is emphasised by the feedback we receive, such as: “I use the information from Vasculitis UK to help healthcare providers understand the issues that affect me;” or “Thank you so much. We sometimes feel really alone with this, your support means the world.”