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.
Detailed Information
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.
Raise Awareness
“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.
This is an intriguing step forward. I really hope that for patients like myself, we get better support for our symptoms and that the provision for more regular injections are provided and taken seriously.
Acknowledgment of the effect that pernicious anemia can have on trying to have a normal life and some support would be nice. To have more frequent B12 injections would be wondrous.
I couldnt agree more!
I really hope so so. I wish I could do more to help campaign for this. I have suffered for years and I fight to have my injections given 6-8 weekly despite my dreadful neurological issues if my injection is late.
The first step on a long journey. It is your dedication that has got us this far. We must all keep hanging on and hope that as the years roll by that a more sensible protocol and better treatment becomes available.
I’ve had P.A. for 46 years and for the first four decades I lived in complete ignorance of what it was all about as none of the nurses who gave me my four weekly injections of cyanocobamalin B12 ever asked me how I was getting on.
It was only after having noticed a return of some neurological symptoms in the run up to my next injection and my “one size fits all” doctor refused to increase their frequency that I joined The Pernicious Anaemia Society and asked on the then forum the question “Am I the only person in the world….”?
I then started to learn and managed to persuade my now GP to let me have three weekly injections.
VERY GOOD NEWS. A BIG THANK YOU for the effort Martyn Hooper is putting into all this. Especially knowing he has been diagnosed having pernicious anaemia himself.
To be deficient in vitamin B12 has a huge impact on someones life. To know that a simple REGULARLY GIVEN injection that isn’t costing the NHS all that much, could make all the difference, now that should be taken very seriously. If the cutting back on regularly given injections, this has happened in my case, is a money matter, then I suggest to look into a different way of Administering this ‘Injection’, as that is where I think the cost cutting is being made. We know in most cases orally taken medication is not an alternative, therefore TEACH us (or willing partner) the correct way of self injecting and send us on our way with a regular prescription and periodic blood testing. It will safe the NHS so much money. Now that is in my understanding a much better way to run and to budget for the Nations Health System.
Let us hope NICE will after research period, see sense and act.
Fingers crossed that this will be a small step. However, from little acorns growth big oaks! I’m the grand old age of 74. So work out for how long I’ve been “suffering” !
I sincerely hope this dialogue in the UK will help us here in the US as well! Praying for a wonderful enlightened update to treatment!
Yippie! Somebody else from the US. We need a support group here as well. I am tired of giving into PA. Luckily my Dr. will let me have my injections as often as I feel necessary. My question is why has no one addressed diet or exercise? I have friends with different autoimmune diseases and they found changing a few things in their environment have “helped”. Has anyone heard of anything
I took your info to a Dr & she was quite rude & abusive & basically refused shots & questioned how I knew I had PA.I had been going to same surgery for 24 years & was diagnosed several years ago by a now retired Dr.I am sick of begging to get shots.Lack of B12 is literally killing me.I have so many auto-immune diseases that I have lost count.To top it all off I now have been diagnosed with Factor 5 Liedens disorder & have passed it on to at least 1 child.
Why are Drs so damn ignorant regarding PA.I am told that as long as my levels are up when they do blood tests I do not need a shot.
Meanwhile I am suffering severely & do not have quality of life.
Better off to be a drug addict,I would get free methodone,what a joke.
Any advice on how to educate Drs greatly appreciated.I am in Australia.