A Patients and Families Support Group

A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

Changes to Specialised Services- aHUS a leader

Changes to Specialised Services- aHUS a leader

The media has featured a number of stories of changes taking place in the provision of specialised services and access processes to new treatments, including changes to the role of NICE in England.

An article in The Guardian (click here)  illustrates the response from some charities, who are a part of the Specialised Healthcare Alliance (aHUSUK and now  Answers for aHUS  is also a member).

One thing learned from aHUS patients experience of accessing eculizumab and gaining an expert centre to deliver a highly specialised service is how processes are always in a state of change and terms are frequently redefined , particularly “affordability”. The exceptionally  extended aHUS /Eculizumab evaluation process ,2011 to 2015 ,permitted  aHUSUK to become  “expert” in the  way things are done. It got to know that “affordability meant affordability”

From what can be seen none of these changes is going to affect the  current  aHUS Specialised Service.  There is no need to ration service. Real experience turned out to be closer to what aHUSUK believed to be the case, than other “triangualtions of assumptions” used by experts to vastly over estimate what costs would need to be afforded adversely affect the decision.

The Withdrawal of Eculizumab Study is an another  example of the NHS, clinicians and patients working together to make the excellent service aHUS patients even more affordable, with even better clinical results for patients.

Not arbitrary but evidenced based, and with patient safety and engagement paramount.The NHS would therefore do well to let this leading patient/provider partnership take its course for the benefit of all.

Leave a reply