RIP aHUSUK 2011-2016

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
Emma Woodward Maya
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
David Webber
Claire Webber
Gavin Smith
Claire Smith
Chris Kilty
Jemma Kilty
Darren Frost
Mike England
Fiona England
The late Jeremy Appleton
Kelly Nott
Mark Nelson
Gillian Read
Kay Yeowart
David Yeowart
Nora Slope
Janet Slee
Clive Edgar
James Dowling
Nicola Dowling
Keren Burdett
Jack
Clive Edgar
Vicky Rogers
Kath Woodward 

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.