A Patients and Families Support Group

A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

Author Archives: highpeakweb

SUPPORT FROM aHUSUK MEMBERS

SUPPORT FROM aHUSUK MEMBERS

The success of a Patient Support organisation depends on its members and aHUSUK is no different . The support aHUSUK has received over the past couple of years has been remarkable.  Members have contributed to much to the activities surrounding the application for eculizumab to be available to all who need it for as long asContinue Reading

GOOD NEWS FROM CPAG

aHUSUK received the following letter from NHS England this morning: Dear all Thank you for attending the CPAG meeting on Friday. I am writing to confirm what we told you after the meeting. You can share this email with colleagues. CPAG made the following decision about reimbursement of eculizumab for atypical haemolytic uraemic syndrome (aHUS). Continue Reading

CPAG MEETING HELD

CPAG MEETING HELD

The second meeting aHUSUK attended was with the NHS England’s Clinical Priorities Advisory Group. It is difficult to understand where this fits into NHS England ‘s evolving decision making set up but it does seem to perform some of the work  that used to be done by AGNSS. aHUSUK  attended the meeting the day afterContinue Reading

NICE EVALUATION-FIRST STEPS TAKEN

NICE EVALUATION-FIRST STEPS TAKEN

This week saw two important meetings attended  by aHUSUK .The first of these was with NICE to see the initial stage of their evaluation begin– the scoping stage -where they establish and define what they are going to examine and how they will do it . They decided :- they were reviewing eculizumab; to beContinue Reading

BBC NEWS Health tourism: Foreigners face charge to access NHS:

BBC NEWS Health tourism: Foreigners face charge to access NHS:

There is a story on BBC News this morning (which be read by clicking here) about health tourism and the launch of a consultation to look at the way the  resources used by the NHS are paid for to treat non EU visitors . This is a delicate matter because of the illegal immigration aspectContinue Reading

SO, WHERE IS OUR aHUS NATIONAL CENTRE OF EXCELLENCE?

Nearly a year ago aHUSUK posted a news item about Lord Howe’s decision on what was going to happen to AGNSS’ five responsibilities once it ceased to exist. As it was a month after the meeting held by AGNSS to review  eculizumab and an aHUS specialised service for England , little did we know thenContinue Reading

E-Petition Response : We will save some aHUS patients, but not others says department of health and they blame AGNSS for it.

E-Petition Response : We will save some aHUS patients, but not others says department of health and they blame AGNSS for it.

Over 10000 people said let all aHUS patients have access to eculizumab  as AGNSS recommended. Department of Health tells them NO. The Department of Health says it will be given to some and precedence will be given to those who caused them not to implement AGNSS recommendation for existing patients i.e. future patients. Those aHUSContinue Reading

E PETITION RESPONSE :WE WILL SAVE SOME aHUS PATIENTS BUT NOT OTHERS SAYS DEPARTMENT OF HEALTH AND  THEY  BLAME AGNSS FOR IT

E PETITION RESPONSE :WE WILL SAVE SOME aHUS PATIENTS BUT NOT OTHERS SAYS DEPARTMENT OF HEALTH AND THEY BLAME AGNSS FOR IT

Over 10000 people said let all aHUS patients have access to eculizumab  as AGNSS recommended. Department of Health tells them NO. The Department of Health says it will be given to some and precedence will be given to those who caused them not to implement AGNSS recommendation for existing patients i.e. future patients. Those aHUSContinue Reading

CATCH 22 for aHUS Dialysis Patients

CATCH 22 for aHUS Dialysis Patients

The NHS England discriminatory policy caused by the Department of Health failure to support AGNSS’s decision, made a year ago tomorrow, to provide equal access to those in England who would benefit,  has left aHUS dialysis patients in the situation where to receive eculizumab for a transplant  they need to be unstable and ill; butContinue Reading

14 JUNE ….one year on of a life on diaysis

14 JUNE ….one year on of a life on diaysis

On Friday (14th June) it will be a year since AGNSS met and decided to recommend a national specialised service for aHUS patients. One year on  most aHUS patients who were ill this time last year  and for years before have not received funding for eculizumab even though NHS England have conceded that for adult aHUSContinue Reading