So – that was 2016

Jan 4, 2017 | Pernicious Anaemia Society | 0 comments

About this time of year, I take the time to reflect on what the society has achieved in the past twelve months. I’ve been writing these reviews for around 10 years now and there are always several significant developments that have taken place that has helped us to achieve our goal of getting the way in which Pernicious Anaemia is diagnosed and treated thoroughly reviewed by somebody who knows what they are doing and who will recognise the positive input that this society can have in bringing about change. Because whilst we do our best to offer advice and support to patients with Pernicious Anaemia and their families and friends we really do need to get to the root cause of all of these problems faced by sufferers and bring about change. Bringing about change will only be achieved via a thorough review of the problems with the diagnostic process and treatment. And in 2016 we went some way towards achieving this.

I’ve identified the following main accomplishments from 2016:

The Conference

Firstly, it was at the end of the year that we held our first conference for three years. And this year we were successful in getting funding from the Big Lottery; a process that began in March of last year. It wasn’t until September that we were told we had been successful in our application and so we used the money that we held in reserve, in case we didn’t get the Lottery money, to have the event professionally recorded.
The conference was to celebrate our ten years as a registered charity and gave us the opportunity to bring together all of the medical professionals that we are working with, either directly or indirectly, so that they could report on the progress they are making in helping to bring about change. We are currently involved with 8 research projects where our input is helping to give the patient’s perspective on dealing with PA. It took an awful lot of planning and even though we began preparations in March not everyone invited to make a presentation could attend. But the main collaborators were there and the feedback we had from them was extremely positive. At least one future collaborative project between two of the researchers at the event is now being formulated which shows just how important these events are.

The Garden Party

Another big event began in March when I was invited to Buckingham Palace to a Garden Party that took place in May. It was, I suppose, in recognition of the work I do on behalf of the society; but it was more than just that; it was recognising that the society is a credible patient support group that deserved to be listened to and that’s why I was to be found wandering amongst the great and good of the UK and the Commonwealth on that chilly May afternoon, stumbling around the grounds with my walking stick, in my ill-fitting suit especially bought for the occasion. Ever since I started the society, we have always faced this problem of being taken seriously, of being recognised as a credible voice of a patient group. The Garden Party, with its formality and dignity showed that at last we, as a society, had arrived.

NICE

In April, I had a thirty-minute meeting with Prof David Haslam, the Chairman of NICE who has asked to be kept up to date with the work of the society, and this wasn’t the only time I would be involved with NICE. In November, I attended an Information Day which was attended by all the major charities in the UK and I was able to network and gain some valuable information. In early December, following a conversation with two of the officers of NICE, I received an email asking me to let them have dates when I would be able to attend another meeting with the intention of them updating their guidelines on the diagnosis and treatment of Pernicious Anaemia. I’m still waiting to hear back from them as I write this review. Again, it’s knocking on the right doors, and being listened to as a credible representative of a special group of patients that has all the promise of bringing about change.

The Website

In June, our new, user-friendly website went live. This was the culmination of around two months of writing and re-writing, testing, re-designing and testing some more. And since the new website went live we have received an enormous increase in traffic to the site and in the number of members joining the society. This increase is undoubtedly due to the new three categories of membership that we’ve introduced. And, yes, it is possible to upgrade to the new Gold category of membership at any time…..

I passed my Grade 3 Saxophone exam in July – Wahey!

In between these milestones I have been quietly working away in raising awareness of our problems. I’ve met with the manufacturers of one of the three main Assay hardware used to detect Active B12 with the intention to raise awareness among health professionals of the health and economic benefits of introducing the Active B12 test into laboratories; I’ve met with three potential research teams; have met with current researchers to provide them with further information; written letters of support for members involved in employment tribunals or having other employment issues; met with teachers and lecturers to explain how the symptoms of PA don’t magically disappear once treatment has begun; answered an average of five telephone calls per day; tried my best to keep my blogs updated and somehow turned my attention to the main objective of this year, 2017.

MBE

Oh! And I was made a Member of the most excellent Order of the British Empire for my work for people with Pernicious Anaemia. And that means I get to go to Buckingham Palace again sometime soon.

2017

Now, I bet you’re wondering what the main objective is for this year aren’t you? Well, I can tell you – it’s a whole new documentary about the problems with the diagnosis and treatment of Pernicious Anaemia that I’m about to start writing; and that will take priority over the writing of the second edition of my second book – Living with Pernicious Anaemia – which I hope will be published in the autumn around the same time as the documentary becomes available.

Finally, I will take this opportunity to thank you for your continued support and to wish you and your families a happy and prosperous new year.