UK aHUS Patients

[Lisa Barker]

At such a crucial time in the UK with regards to getting funding for eculizumab it is important for patients and their families to do as much as possible to help this along.

At the moment there are over 150 aHUS patients in the UK but unfortunately we do not know all their details e.g name, e-mail etc... due to patient confidentiality which means we cannot contact them to send the relevant surveys and give them the information they need to help with this great challenge.

 

Therefore I am asking if any of you out there haven't already been in touch with anyone about the patient survey, MP letter and the e-petition could you please contact me though this forum so I can get some details from you please. 

 

Thanks again for everyone's support!

[Len Woodward]

A short update on aHUSUK:

• the Patient Voice submission will take place throughout April. 14 people will be interviewed including patients carers and family members. The final report will be reviewed by aHUSUK in early May and a presentation given to AGNSS on 14 June, the day that they will decide on their recommendation to the Minister of Health;
• the  e-petition  signatures continue to grow and now stand at over 2400;the Rar
• aHUSUK have also been asked to feedback to the UK Rare Disease Plan consultation document;
• Lisa Barker has also joined as one of the charity's trustees.

[Cheryl Biermann]

Good luck and congratulations on Lisa's inclusion as a trustee!  I'm marking my calender and will say a little prayer for this.

[Lisa Barker]

Thank you Cheryl, have already been given plenty of tasks to 'get stuck into' since becoming a trustee which is good to be helping in some way. I feel proud to be part of something that is helping patients just like me and am honoured to be given this role. 

[Len Woodward]

A chance to give an update on aHUSUK at last!

For the past couple of months our focus has been on the Patients Voice project.

With the help of some research assistance from the NHS and with contributions from 14 of our members, an excellent piece of qualitative reseach has been produced on what it is like to have and be treated for aHUS in the UK.

aHUSUK has given the report to AGNSS, the body that is to decide on whether it will recommend the use of eculizumab to all in England who need it .

On Thursday this week (14th) my daughter will represent aHUSUK patients when she gives a presentation to the 40 member AGNSS committee and sum up the findings of the research report.

After AGNSS have made its decision about commendation, it will be put into a black box(really) which can only be opened by the Minister for Health when he is ready to make his decision.We do not how long that will take!!

Meanwhile we will continue to make MPs and the public aware of the application through letters and support of the e petition which has reached a remarkable 2637 signatures.

Personally I am looking forward to attending the 2nd SHUa Conference in Paris this coming weekend and meeting up with some of the people I now know from this site!!

 

[debbie thelwell]

Fingers crossed for the 14th I know Emma will be Fantastic as our voice!
The report is so powerful they cant help but be afffected by it and It will make the difference needed for all with AHUS

[Lisa Barker]

I can't believe how far we have all come in the past year so much positivity through so much trauma.  Emma is an outstanding person who dedicates so much and I truly believe that our application is one of amazing quality, truth and could not of been achieved unless all the people involved had not contributed so much. Fingers crossed everyone. 

[Cheryl Biermann]

What an exciting time for aHUSUK! I am positive Emma will do wonderfully.  Whenever anyone speaks to the movers and shakers of one country, it makes a difference to all.  It is an invisible web which continues to spread and reach into the darkness of misunderstanding and lack of knowledge.  My prayers are with y'all.

[Len Woodward]

Thank you Cheryl, Emma has been touched by the support shown by everyone including you guys in the States

The submission is now done and both report and the presentation have been acknowledged by the NHS recipients for their richness and excellence.

AGNSS' recommendation is now in the  black box awaiting the Health Minister's consideration, decision and announcement and we have no idea when that will be!!!!

Hopefully the sun will shine for a few weeks to make the wait a little more tolerable!

You are so right about the "invisible web" . Emma and i going to Paris tonight to attend the French aHUS conference tomorrow and also where we hope that a federation of european nations' aHUS patient groups will emerge ..  

 

  

[Len Woodward]

Quick update , still no sign of the sun shining , wettest June on record!

Nor has  the "black box", with the recommendation in, arrived at the Health Minister's office; so said the Earl Howe in the House of Lords on Tuesday.

[Cheryl Biermann]

You

must be getting our rain, one of the hottests driest Junes on record, Mo. feels like Texas!    I bet y'all are getting impatient with the "black box", keep the faith.

[Len Woodward]

So it is the Missouri rain we are getting ,thank you very much!!

Yes things are getting  a  little tense. 

I had hoped that we would hear something this week, because it is National Transplant Week in the UK (Pass it on) and the politicians  pack up for their Summer holidays next week. 

[Cheryl Biermann]

I posted this to FB with a passionate plea for prayers, a little global prayer chain can't do anything but help, right?