I set out in this series of blogs to not only tell the tale of a Reluctant Advocate , but also put on record a “History of aHUSUK”.
It is now history. When those of us, who were the in the middle of a fast moving, yet frustrating, series of events , had a chance to chat about it all, we said there should be a book about this. Then quickly dismissed the thought , believing no one would be interested, nor even believe it.
Well a “book” has been written and will be kept in the aHUS alliance “library” in the website’s “info centre”. Maybe in years to come someone might possibly be interested in the history of aHUS patient advocacy in the UK back in the old days, and find it insightful.Just as I was interested in Von Gasser and the “Birth of HUS” over 60 years since those much more significant events.
For most aHUS patients being part of a formal advocacy organisation is unlikely to happen ,and what they would do if called upon will never be tested. Neither will they know how they could have coped with it all.
Many of us have faced other serious illnesses and relied on others to do what needs to be done without knowing just what that might have entailed. Nor giving much thought to why those others did so.
For my part I did what I could. There were many thousands of people in Pharma, Clinical Research and Healthcare who had played their collective part leading up to the moment in time when a decision was made to recommend eculizumab for aHUS patients in England. All I could do as part of a patient group was to advocate with all the skills and knowledge I have acquired over the years.
The Reluctant Advocate is my testimony to what part I played among extraordinary people in extraordinary times doing extraordinary things and really achieving extraordinary results. Personally I had not done anything like it before nor I had I ever wanted to do anything like it.
Maybe it was a case of fulfilling a destiny of my aHUS ancestors, maybe it was more selfish than that.
Or just simply a deep seated optimism back in 1997 ,when in a room on a Nephrology ward in a decrepit northern hospital with plenty of evidence to the contrary in front of my eyes , that somehow good would come.
But I did volunteer and I did advocate.
Would I want to do it all again? I still do not want to. Over the five years I felt extreme anger, disappointment, confusion and frustration but also moments of joy, clarity ,added purposefulness in my retirement and yet laughter with tears in my eyes such were some of the absurdities we faced and achievement attained.
Would I do it all again if needed? If I had to. If equity of treatment for my family was at risk certainly , but I would do somethings differently.
It all remains a part of my life still and I have continued to fulfil the last wishes of aHUSUK members.
Under a new guise of Answers for aHUS I am committed to seeing that the research funds raised are used for something that will be a lasting legacy to the “few” that raised them.
I am still a member of the trial management team for the SETS study of the safe withdrawal of eculizumab , a NICE condition to its approval and which underpinned that part of aHUSUK’s vision for eculizumab that it should not only available when needed but also only “for as long as is needed”
I still keep the UK a part of an international aHUS alliance , which it helped found.
I still enjoy meeting and working with eminent aHUS Researchers from around the world and speaking for aHUS patients in their Global aHUS Registry.
I still scan the UK healthcare world for potential risks to UK aHUS patients continued care ( at green alert since the NICE decision but currently raised to yellow).
But by the end of this sentence, I will have completed one long standing commitment , to write the Reluctant Advocate’s story as a part of aHUSUK.
Note : Compilation of the Reluctant Advocate blogs is being completed with more content and will be available in the alliance’s Info Centre soon.