I suppose it started in February of 2016 when I received a telephone call from a lady who told me she was calling from The Cabinet Office.
“Would you like to go to a Garden Party in Buckingham Palace?” she asked.
“Of course” I replied
“Somebody would like to meet you” she said.

And so it was that in May of that year I was found wandering around the gardens of Buckingham Palace in my ill-fitting suit. I never did get to meet the Queen though I did see the top of her pink hat bobbing among the thousand or so people there.
Before she had ended the call, the lady from the Cabinet Office told me that she has vitamin B12 injections (that’s her, not the Queen). I asked her if she had Pernicious Anaemia but she told me that she hadn’t had a firm diagnosis but her doctor “thinks she has”.

Anyway, fast forward to November 22nd of this year. There, lying on my doormat was an envelope that was “On Her Majesty’s Service”. Above the address window were the words
URGENT
PERSONAL
And underneath the little clear plastic window were the words
CABINET OFFICE

I suspected that this was another invitation to another Garden Party but, on opening it, I realised that I was being offered an Honour in the form of becoming a Member of the Order of the British Empire for “services to people with pernicious anaemia”.
The letter informed me that the Prime Minister had taken the advice of the Head of the Civil Service and Main Honours Committee and was going to recommend to Her Majesty that “she may be graciously pleased to approve” me to be appointed an MBE.

I had to return a form that informed the writer that I would be pleased to accept the honour and the letter stated that I would hear nothing more until I was told the date that I would be invited to Buckingham Palace for the Investiture.
It was made clear that this was all in the “strictest confidence” and the only person I might tell would be any Press Officer attached to the society (we do have a volunteer who looks after this side of things who I called immediately).

And that was it. Nothing was to be announced until 22.30 hrs on 30th January, and the London Gazette would then publish the full list and this would appear in some national newspapers in full the next day.
And so, in recognition not only of the work that I have done, but the work of all the volunteers and helpers of the society do to help us do what we do, I have been made an MBE.

And what does that mean? Well, without doubt the biggest thing is that the society is now recognised as an active patient support group that is legitimate and trustworthy. And this is no mean achievement but the end of a long process that started with the society becoming a registered charity in 2006, (not as easy as you may think), and ten years of gaining credibility so that decision makers involved in healthcare would hear what we have to say. And to achieve the credibility we had to act in a manner that identified the due processes involved in getting things changed and by observing established protocol and diplomacy; and remember, diplomacy is a branch of good manners.

Yes, it’s been frustrating, and it’s taken a long time, but now, as a respectable voice of patients with pernicious anaemia, the society’s voice is now being heard although there are still some who need convincing that the problems with the diagnosis and treatment of the condition need to be thoroughly evaluated by somebody who knows what they are doing – a medical professional.
It’s all a far cry from the early days when a GP at my local surgery laughed at my intention to start a society. “There’s no need for any such thing” he scoffed. Well, look at us now.

Thank you to whoever it was that nominated me for the award. And thanks also go to those health professionals who provided references to the work that the society does. Holding the award gives us even more credibility and I’m hopeful that it will open even more doors in 2017.

Finally, I wish all of my readers a Happy and Prosperous New Year. I will write an end of year Review in the next week or so. You’ll excuse it being a little late – I’ve been concentrating on other things!

See also the Press release

More on this story:
Wales Online

Martyn Hooper, who has dedicated his life to fighting for better recognition of what he has dubbed a ‘forgotten disease’, also received an MBE.
Martyn, 57, from Brynmenyn, Bridgend, who received the recognition for his services to people with pernicious anaemia, said: “I am privileged to be made a member of this distinguished order and I accept it graciously on behalf of all those who help the PA Society do what it does.”