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]

 This discussion forum follows on from the thread in "Patient's Survey"
Ian Mackersie aHUSUK's Secretary is presently writing to all known contacts about the new patient and family support group in the UK.
If you are in the UK and would like to join aHUSUK let Lisa know and she will contact Ian.

Please use this as a "aHUSUK" forum to discuss and raise group issues.

As at today the epetition has reached 604 signatures and is 15th on the Dept. Of Health list.
Len

[Len Woodward]

The e petition continues to move upwards. It is at 694 and in 13 th place.  

There are members of this site from the UK (nearly 20)who are not aware of what is going to secure Government approval got the use of eculizumab in the treatment of aHUS.

If they could join the campaign we could collectively boost the signatures to demonstrate the public support got aHUS patients and their families.

I wonder how they can be approached if they are not visiting the site at present?

Len Woodward said:

 This discussion forum follows on from the thread in "Patient's Survey" Ian Mackersie aHUSUK's Secretary is presently writing to all known contacts about the new patient and family support group in the UK. If you are in the UK and would like to join aHUSUK let Lisa know and she will contact Ian.

Please use this as a "aHUSUK" forum to discuss and raise group issues.

As at today the epetition has reached 604 signatures and is 15th on the Dept. Of Health list.
Len

[Lisa Barker]

As i discussed a hardcopy of the epetition is not available which is a shame as so many of my friends have asked about one therefore i have printed off an 'information sheet' and some little miniature hand outs with the epetitions web address on. Some of the local schools have agreed to hand these out as well as some local business e.g bargain booze, hairdressers, a large antique fair with over hundreds of visitors and even my local doctors.  If anyone is keen to also do this i can email you the template i have done.

Thanks

Lisa

[Cheryl Biermann]

Most people, if you friend request them will get a notification on their email, then you would be able to do a couple of things, one would be to private message them with the pertinent information or ask them to look at the forum and reply.

 

Len Woodward said:

The e petition continues to move upwards. It is at 694 and in 13 th place.  

There are members of this site from the UK (nearly 20)who are not aware of what is going to secure Government approval got the use of eculizumab in the treatment of aHUS.

If they could join the campaign we could collectively boost the signatures to demonstrate the public support got aHUS patients and their families.

I wonder how they can be approached if they are not visiting the site at present?

Len Woodward said:

 This discussion forum follows on from the thread in "Patient's Survey" Ian Mackersie aHUSUK's Secretary is presently writing to all known contacts about the new patient and family support group in the UK. If you are in the UK and would like to join aHUSUK let Lisa know and she will contact Ian.

Please use this as a "aHUSUK" forum to discuss and raise group issues.

As at today the epetition has reached 604 signatures and is 15th on the Dept. Of Health list.
Len

[Len Woodward]

The e petition calling for Government to provide treatment
of aHUS including eculizumab is reaching 800 signatures and is well established
in the Department of Health’s top list of petitions.

The patients survey is due in this Friday 28^th
October if there is anyone from the UK who can still contribute the link is  http://www.surveymonkey.com/s/ahus

Len

 

[Cheryl Biermann]

Wow!  That was quick!  You all have done a great job getting the word out, good luck!

[Len Woodward]

Thanks Cheryl there are now more people active in the campaign.

The e petition will continue to be important up to the time the Health Minister decides next June on whether aHUS treatment is to be nationally commissioned and funded.

The earlier cut off for the survey is because of the publication schedule for a document to be launched in a meeting with MPs and Peers in Parliament early next year.Their support is important in the decision making process.

Contributors to the survey are going to be asked to volunteer to be interviewed in more depth by the authors of the document.

Before the Minister makes his decision, an Advisory Group for NHS Specialised Services(or AGNSS) will evaluate each application that has been made for national commissioning or funding of treatment.There are another seven applications, in addition to aHUS, seeking specialised service status from in 2012.

aHUSUK representatives are meeting with the Head of Policy from AGNSS next Monday(31st), to establish how they intend to hear the "patient's voice" in their evaluation and subsequent recommendation to the Minister. 

 

[Cheryl Biermann]

That sounds like a certain amount of dedication on aHUS advocates and patients, we wish you all the luck...
maybe the pricing will go down as more countries approve it for use, supply & demand???

Len Woodward said:

Thanks Cheryl there are now more people active in the campaign.

The e petition will continue to be important up to the time the Health Minister decides next June on whether aHUS treatment is to be nationally commissioned and funded.

The earlier cut off for the survey is because of the publication schedule for a document to be launched in a meeting with MPs and Peers in Parliament early next year.Their support is important in the decision making process.

Contributors to the survey are going to be asked to volunteer to be interviewed in more depth by the authors of the document.

Before the Minister makes his decision, an Advisory Group for NHS Specialised Services(or AGNSS) will evaluate each application that has been made for national commissioning or funding of treatment.There are another seven applications, in addition to aHUS, seeking specialised service status from in 2012.

aHUSUK representatives are meeting with the Head of Policy from AGNSS next Monday(31st), to establish how they intend to hear the "patient's voice" in their evaluation and subsequent recommendation to the Minister. 

 

[Len Woodward]

The date of the meeting in Parliament is now known, it is on the 17 January 2012.

An event notice has been put on this site.

Any UK  aHUS patients and/or their families will need to be formally invited by the host, the MP for Newcastle Central, Chi Onwurah.

If you wish to be invited could you let aHUSUK know as soon as possible.

 

[Sylwia Antkowiak]

Hi Lisa,

I'm based in London and have been to Newcastle Conference. I've done survey ( not sure if not too late) and e petition. I also sent the link with e petition to my friends and colleagues.

I don't have MP letter so I would be grateful if I could get a copy .

And final question how do I get to the Seminal at Houses of Parliament on 17th January

Thank you very much

Sylwia

[Len Woodward]

Hello Sylwia

Until we can get our website up and running you can contact aHUSUK via the www.ahus.org.uk site and email Prof. Tim Goodship at his address which is given the bottom of the page. He will let aHUSUK know and our Secretary Ian Mackersie will be in touch.

It was not too late for the survey. I understand that there have been about 25 responses so there is a lot for aHUS Action to use . Good work on the e petition, it has helped with getting it above 900 signatures now and is key part of the way that aHUS Action are demonstrating the "political will"  supporting this treatment.

Ian will be able to give you a template letter that  many of us have used to write to our MPs. Again it supports the "pressure" on government to do the right thing. 

The first meeting with the National Specialised Services Commissioning Team and AGNSS took place on Monday, and there will be more meeting to follow. As aHUS Action's survey will help provide the Patients' Voice to MPs etc, so will aHUSUK representations to AGNSS and we hope that you can also join with us on doing that.

Thanks for getting in touch.

 

Len

 

[Len Woodward]

Hi again Sylwia

 

Ian has joined the Foundation as a member so you could contact him down the friend route.

 

Len