The Chairman of the Pernicious Anaemia Society has been contacted by the Director of Guidelines for the National Institute for Health and Care Excellent (NICE) and asked to complete a Template for a Topic Selection Pre-Referral Briefing.
This is the first stage in getting NICE to issue a set of Guidelines on the Diagnosis and Management of Pernicious Anaemia.
Since the Pernicious Anaemia Society came into existence, and it became evident that there were serious problems with the way in which the disease is diagnosed and treated, our main objective has been to get someone who knows what they are doing (i.e. a Doctor or team of Doctors) to undertake a thorough review into the problems that patients face in getting an accurate and timely diagnosis and adequately treated.
This, after so many years of campaigning, is now being considered by NICE.
However, this is going to be a very long drawn-out process. We have to state our case under a number of headings provided by NICE which requires some detailed information. We are currently in the process of asking our Round Table Members (our research partners) to offer any suggestions as to what must be included, though the submission itself will be from the PAS as a patient support group rather than a professional body.
“We have to be aware that, just like other patient support groups, we cannot tell doctors or medical organisations what they should be doing”, says Martyn Hooper MBE, the current Chairman of the PAS.
“We are in an unique position to provide NICE with the data we have from our membership surveys, papers published by our research partners and other interested parties and even case studies of patients’ experiences; however all we can do is use this information to Raise Awareness of the problems faced by our members. And this is what we are able to do well which is why NICE have asked us to be involved in the process” he says.
From now (November 2017) and as long as there are no serious problems encountered, it is unlikely that the new Guidelines will be commissioned until mid 2019 and then another three years or so, at a cost of around £750,000, until the new Guidelines are produced. There are no short-cuts and even though there is an urgent need for them, strict procedures and protocols have to be followed in order to ensure that the evidence gathered is robust and trustworthy.
A Long Journey
“I like to think that, at last, we are at the start of a long journey, but it is a journey that is both necessary and beneficial not only for patients but for healthcare practitioners as well,” says Martyn.
We would like to thank NICE for providing us with the opportunity to work with them and we are grateful for the help and support of our Research Partners and other interested parties in relation to this exciting development.