The reluctant advocate story nears its end
aHUSUK had been created to support existing aHUS patients and those in the future , to get the treatment they needed when they needed it (for as long as was needed).
By mid 2016 the organisation was becoming very tired, the remaining trustees were ,as those who had dropped out along the way, exhausted by doing something that was only expected to last for a few months.
Advocating for aHUS, however, came at a time of momentous change for those with Rare Diseases and we were in the middle of this maelstrom because the drug we needed , eculizumab , came with a notorious price tag and it seemed to break existing evaluation and approval processes throughout the UK necessitating reforms of policy causing delays which aHUS patients ,unfairly, had to endure.
The Trustees therefore asked members if the charity should wound up. Most people had an enormous respect for aHUSUK and felt it would be a great loss if it was to end. But there was no appetite to rise again as those early Trustees had done at Wimpole Street. (The irony being that the Annual General Meeting in May 2016 was being held in the very same building that aHUSUK had been created in 2011). The members gave the Trustees instructions on what to do with assets and outstanding commitments.
The aHUSUK website came out in protest to the decision and crashed, preventing a report of the AGM being posted, so RareConnect was used as a backup.
aHUSUK was akin to Nanny McPhee when it was needed it was not wanted, but although many now wanted it , it was not needed.
aHUSUK had done its bit
A few months later the last aHUSUK news item on its website reported its demise.
“Today Monday 3 October 2016 is the day that aHUSUK ceases to be .
For just over five years it has worked for aHUS patients and families doing what it said it would do when a group of aHUS patient families came together in Wimpole Street , London on 10 September 2011.
It became a registered charity.
It provided a patient voice as the AGNSS, CPAG and NICE evaluations of eculizumab were done.
It provided a network for patient support and advice”
It established relationships with renal, rare disease, specialised NHS service, complement and aHUS organisations at home and abroad
It provided news and information about aHUS in over 400 wide-ranging blogs on its website
It introduced a patient card now held by over 1500 people around the UK , just in case they need it.
Its website has been a record for history of what happened to aHUS in the UK in 2011 to 2016.
Its website is ranked in the top 18 million websites out of over 600 million globally .
It run petitions which tens of thousands of people supported.
It has raised over £50,000 for research
Its trustees worked with members to punch far above their weight, replicating much of what larger and highly financially supported health charities do
Whilst it can not be said that it involved every person affected by aHUS all of the time, it was supported by enough of them for some of the time
It is now time for another organisation to engage all of the aHUS community for enough of the time to do even more for the disease which embraces and unites us all.
Goodbye from ,and to, aHUSUK as it joins the ages.”
As the Reluctant Advocate story draws to an end I would like to acknowledge the “Few” who made such a difference. The aHUSUK Trustees who served with honour , and the members who notably helped with aHUSUK’s media and fundraising campaigns.
|Honorable Trustees||Notable Members|
|Ian Mackersie||Sylwia Olejnik-Antkowiak|
|Debbie Thelwell||Stuart Anderson|
|Vera Mackersie||Tevor Mumby|
|Elena Lilley||Kimberley Balsden|
|Christine Western||Chris Higgins|
|Lisa Barker||Toni Leyalnd|
|Margaret Squires||Amanda Quinn|
|David Squires||The late Dianne Illingworth|
|Shaun McCowie||Sally Blackmore|
|Kelly Bazzichi||Janet Ford|
|The late Jeremy Appleton|
And finally an acknowledgement to Prof Tim Goodship whose work I have known about for over 20 years. His research team’s findings about a small difference in a small part of Complement made a big difference for all aHUS patients. But for me it was personal. The small difference he found is something that has been passed down through my family’s ancestors for centuries. It was the reason that I needed to overcome any reluctance to advocate.
It was Prof Goodship who made the call to action that led to aHUSUK.
On first meeting him in Newcastle nearly 10 years ago, he explained all about a “solution” that we had already heard about and been waiting over 5 years for. He told us that “we may have to campaign to get it ,write to our MP, because it might not be easy to access, it was expensive”. We told him “we would be up for that, our MP may well become Chancellor of the Exchequer after the next general election” ( and he did and was very supportive of my daughter’s cause). Little did we think what else it might entail.
I know now.
Compilation of the Reluctant Advocate blogs is being completed with more content and will be available in the alliance’s Info Centre soon.