The finest hour of the few.

The Challenging Journey to bring Treatment those in the UK with Atypical HUS

The Finest Hour of the Few:  Part 11 in The Reluctant Advocate series

 

So we now had a message and had a target audience in mind and some plans for how it would be delivered.

But what started as a four hours a month task at the start had rapidly passed four hours a week and was now four hours a day for most aHUSUK trustees and would now move to 2 to 3 times that for some. We were doing what Public Relations professionals would do but in our case for no pay but just because it mattered very much. (Probably a key test for patient advocacy if it does not matter that much, do not do it).

Members of Parliament (MPs) were our first key audience. Earlier aHUS patients and their families had been asked to write to them to tell them about aHUS and the AGNSS evauation of eculizumab. We were advised to do that because MPs would have to write to the Health Minister who would have to reply. That correspondence would all go into a “file” at the Department of Health. The replies from MPs fell into the pattern “The treatment is being considered by AGNSS so they would have to see the outcome before taking further action”.

AGNSS recommendation was now known and aHUS patients had been treated unfairly so we asked them to take up the case once more. They did but now there were more than twice the number of letters sent and the Health Minister had to justify why the health reforms were punishing this small group. The file had grown considerably and this was just for a very rare disease patient cohort.

There was another way to make MPs aware and that was through an ‘Early Day Motion” which if sufficiently supported could permit the matter to be discussed in Parliament but if not would raise some awareness. Sadly this is a much discredited element of parliamentary democracy because it was in competition with nonsense motions about “ support for football teams which had been promoted or won a cup competition”

There was one other way to get it into Parliament and one which would be a major challenge and a very high mountain to climb. The petition.

There were two types of petition –  written and online

The online petition or e- petition was a formal process run by parliament itself which offered a formal response from the relevant  Health Minister if at least 10, 000 people signed it. It would also be debated in Parliament if 100,000 people supported it. We had supported an e-petition previously submitted by an organisation of aHUs clinicians to raise awareness and which was expected to raise a few hundred supporters. aHUSUK got involved and raised over 2500 signatures . Not enough but we were told that it was someone’s job at the Department of Health to monitor emerging issues and we had got aHUS on to the first page of Health issues and into view.

This time it would be aHUSUK that would be the petitioners and we would need to get many more people involved and get many more to support us. We wanted visibility but moreover we wanted a response from the Health Minister.

The written petition was the traditional democratic process. It could be delivered directly to the Prime Minister to get the Health Minister to act or could be handed over to the Speaker in Parliament by an MP or MPs to go to the Health  Minister to respond. We applied for it to be done both ways.

All very well but we had to get signatures. Firstly we created a call to action portal on our website . Anyone wishing to support the e-petition could be taken directly through to the “signing page” by clicking on the portal button. But we also needed to get people to come to the site and this was going to take more than newsletters to our members. We also created Facebook and Twitter Accounts.

The social media is a very powerful tool when it comes to gaining on line support. Posts and tweets to primary followers need to be shared and retweeted by them to their followers and so on to other followers if the petition was get the outreach to get petition signed. And it happened on some posts a reach of 20,000 or more was achieved, not all led to signatures but if 5% or 10% did it would boost numbers greatly. It was also a good thing if someone with a high profile with lots of followers was to support you . The lead singer of Dr Hook (songs: “Sylvia’s Mother” and “If you’re in love with a beautiful woman”) Dennis Locorriere gave his support and asked his fans to sign our e-petition.

We begun the e petition on 26 February and by Rare Disease Day 48 hours later we had already got 1000 signatures . We set ourselves a target to get 10000 signatures by St George’s Day, 24 April and “ By George we got it”.

Our petition was in the top three health topics and matching topics affecting 100, 000s or more people.

The written petition demanded a different approach . It could include those not on line and also was easier for all signatories to do. Families were galvanised asked all and sundry to sign the petition, neighbours, parents in school yards, window cleaners and so on. Some grandparents also stood in town squares and asked passers by and others stood out football grounds and got 1000s of support signatures.

By 25 March we were booked to present the first tranche of the petition containing 15000 signatures to 10 Downing Street. 6 members of aHUSUK were allowed into Downing St to hand it over. It was filmed and featured on national and regional TV.

Some  images of the presentation can be seen here and here

 

The second tranche was to be handed over in the House of Commons and split between two MPs who had been asked and had agreed to support us. So another another 20,000 to 30000 signatures petition were duly handed over some six weeks after the Dowing Street handover.

In addition to this some aHUSUK members had appeared on national and local radio and TV, as well as in national and local newspapers. A small number of aHUSUK members had created considerable noise, all of which was being noted at the Department of Health. It was now May 2013.

It had mattered to aHUS patients and so the few had done it for each other, even for the benefit of those aHUS patients yet to come, even for those who had chosen not to join in the battle.

The aHUS few’s finest hour.

 

 

The Reluctant Advocate:  Read the Series  (Click Title links below)

 

 

A change in gear  Part 1

 

Where the heck did that come from?  Part 2

 

Now where is my tutu?  Part 3

 

Hurry up and Wait  Part 4

 

Much ado about nothing Part 5

 

“It’s  BLOODY  scary!”  Part 6

 

Don’t Rain on Our Parade!  Part 7

 

The Higher You Build Your Barriers   Part 8

 

Good Will Come Together?  Part 9

 

What do We Need?  When do We Need It?  Part 10