Patient Survey

[Lisa Barker]

I have been asked to try and find any patients or families of aHUS sufferers who are willing to complete a patient survey to help us in our fight for funding/ approval of the ecluzimab drug (UK) only. If you havent already completed and are willing to could you let me know so i can forward the survey onto you please. Many thanks

[Vicki Provan]

Hi Lisa.  I'm willing to do a survey for you.   We need to see Soliris available ASAP in this country.  It seems that we have pretty similar stories with aHUS.  I had 4 different GPs tell me I had a virus before the 5th one realised there was something seriously wrong and sent me to hospital!  What age is your daughter?  I have two boys aged 3 and 19 months.

[Lisa Barker]

Hi Vicki,

Thats brill if you can let me know your email ill send it to you hun as it has the person who you send it to as it has personal information. 

My daughter is 4 on the 25th of this month you have done well have 2 i struggled having one. Are you on dialysis? x

[Linda Burke]

Hi Lisa,

You're welcome to begin a "UK Forum" on this site to post links to info and activities, if you wish.  That would give you a centralized place to post, helping UK patients/families find info and interact more easily.  Best regards, Linda

[Lisa Barker]

thanks linda good idea i will try to get round this this x

[Vicki Provan]

Hey

I had my boys before all of this happened.  Thank goodness!  It's really hard work but I wouldn't be without them!  I'm on peritoneal dialysis at the moment but it's not working very well.  I'm supposed to be getting a fistula made soon and then switching over to haemo next year some time.  Do you self-dialyse or do you have a helper?  I need to make a decision about whether to do home or hospital.  Lots to think about!

Take care

V x

Lisa Barker said:

Hi Vicki,

Thats brill if you can let me know your email ill send it to you hun as it has the person who you send it to as it has personal information. 

My daughter is 4 on the 25th of this month you have done well have 2 i struggled having one. Are you on dialysis? x

[Lisa Barker]

i used to go to the hospital but am not at home and its 100% better. You have to have a carer at home they wouldnt let you dialyse at our hospital at home i someone wasnt with you it wouldnt be safe incase you passed out. I do self needle though. I currently do 5 times a week 3 hours a session. x

Vicki Provan said:

Hey

I had my boys before all of this happened.  Thank goodness!  It's really hard work but I wouldn't be without them!  I'm on peritoneal dialysis at the moment but it's not working very well.  I'm supposed to be getting a fistula made soon and then switching over to haemo next year some time.  Do you self-dialyse or do you have a helper?  I need to make a decision about whether to do home or hospital.  Lots to think about!

Take care

V x

Lisa Barker said:

Hi Vicki,

Thats brill if you can let me know your email ill send it to you hun as it has the person who you send it to as it has personal information. 

My daughter is 4 on the 25th of this month you have done well have 2 i struggled having one. Are you on dialysis? x

[Len Woodward]

Hi Lisa Vicki and Linda

As Lisa found out after she started this forum, a patient and family support group has been formed in the UK. Debbie Thelwell reported it in her blog on this site on 9/11. It has a working name of aHUSUK.

This Survey is important because aHUS Action, a body set up under the leadership of Professor Tim Goodship, is going to create a document from it to give to MPs and Peers at a meeting in Parliament in late 2011/early 2012. This document will illustrate what impact aHUS has on people and why the treatment that the Government is being asked to fund should be approved.

As far as lobbying is concerned our problem in the UK has been, that although it is known there are over 170 people with aHUS in England, Scotland, Wales and Northern Ireland, because of patient confidentiality only 24 patients/ families (actually 25 now that Vicki has responded!) are known to aHUS Action and aHUSUK. It will certainly help our lobbying and other efforts if more patients are engaged. Hopefully a UK aHUS FORUM (could the heading be broadened to this?) on this website will, amongst other things, help contribute to finding more of them.

The Foundation’s website is excellent and I, like others from the UK, have dipped into it on many occasions to learn about aHUS. In the UK the aHUS.org.uk website is going to be developed for aHUSUK’s purposes and a UK Forum is planned to emerge in that.

a HUS national groups are springing up throughout the world to bring together their countries’ patients and families to achieve their national missions.

The website atypicalhus.ning.com is a global leader and a beacon for individuals around the world. So Linda I wonder whether in the longer term, once aHUS.org.uk is fully developed, could the  UK forum on the Foundation’s site perhaps be replaced by an international groups’ forum to bring together patient groups to discuss their work. 

Meanwhile any one from the UK who responds to this forum and who would like to join in with aHUSUK, then could they let Lisa know. AHUSUK will let others know that a UK aHUS FORUM exists on the Foundations website.

Len

AHUSUK (Treasurer)