Parliamentary Seminar on aHUS in the UK

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Comment by Len Woodward on January 19, 2012 at 7:25am

Helen

Although the application for a Specialised Service currently applies to NHS England a question was asked at the Seminar about the provision of eculizumab  in Scotland.

As a result some families with relatives in Scotland are wanting to start a movement to get eculizumab provided in Scotland. As you are living in Scotland and have had a very sad experience of aHUS would you be prepared to join in with the other families in a Scottish movement.

If so we can put you in touch with other relatives. aHUSUK  will also support the the Scottish Group and would welcome someone to be become a Trustee for Scotland. aHUS Action would no doubt also be prepared to support the Group in any dealings with the Scottish Government.

I have made a friend request so that we can message each other if you prefer.

Look forward to hearing from you.

Len 

Comment by Len Woodward on January 18, 2012 at 4:43am

The Seminar was well attended and held in the Houses of Parliament  Attlee Suite, named after the Prime Minister, whose Government formed the NHS after WW2.

MP Chi Onwurah, who hosted the meeting and who is supportive of the campaign, introduced the speakers including Prof Tim Goodship, who is an authority on aHUS, and Josie Godfrey from the NHS, who is managing the Specialised Service application process. 

The two other speakers were aHUS patients. My daughter Emma and Vera Mackersie talked about their experience of aHUS . Emma spoke about what had happened to her  over the fifteen years to the day since she first heard the term haemolytic uraemic syndrome in hospital in Manchester, and her life on dialysis. Vera  spoke about how receiving eculizumab as part of a clinical trial in Newcastle  has made such a difference and confirming its effectiveness.

The audience responded well and many statements were made and questions asked about aHUS and its treatment.

As just one  part of the overall campaign the Seminar was a success in raising awareness and support.

A further noticeable outcome was the way the aHUS patients and families, many of who had only previously communicated by e mail or telephone or through the Foundation's website took the opportunity to get to know each other and a positive feeling of united purpose has emerged. 

Comment by Linda Burke on January 17, 2012 at 10:27pm

Thinking of our aHUS families in the UK today - looking forward to new info about this seminar at the Houses of Parliament.

Comment by Linda Burke on January 15, 2012 at 1:43pm

Just posted this seminar on Twitter and on the aHUS FaceBook page (see links on the Home Page here).  Feel free to log on to our aHUS FaceBook page to add comments about this important event....

Comment by Len Woodward on January 10, 2012 at 3:57am

Hello Helen

I am very sorry to hear about your daughter and understand what it is like to be a carrier of the factor h mutation.

A number of patients and families have found the distance too great to attend the seminar .

More are attending the first general meeting of aHUSUK in Solihull which is more central. The meeting is on 28th January 2012 at the Holiday Inn and, apart from dealing with  the business of the charity there will be a mini conference in the afternoon with expert speakers about aHUS.

Perhaps you would like to come along.

More information is available on the website  www.aHUSUK.org  and shortly it will also have a forum too, which you may wish join.

Len

 

Comment by Helen Macqueen on January 9, 2012 at 4:31pm

Due to the distance I will not be able to attend.  I have recently been found to also have the factor H mutation which caused my 20 year old daughter to develop aHUS in June 2010 for which she did not survive as the treatment was not available.  I hope the future is better for others.

Comment by Linda Burke on November 4, 2011 at 11:06pm

Thanks for adding this, Len.  You'll note under the tab "News & Patient Materials" that we've created a down-loadable aHUS brochure that you may wish to distribute at this event.  (We do have specific files available for printing services, too)