Winter 2019 – Volume 2 Issue 21
CHAIRMAN’S REPORT ON 2019
And so, with Christmas over and the New Year just arriving, I thought it would be a good idea to look back at 2019 and let you know what the society has been doing to help address the serious problems with the diagnosis and treatment of Pernicious Anaemia.
And it’s been a busy year. Visitor numbers to the website keep growing and an analysis that I presented to the Trustees at this year’s AGM show the following website data.
There were over half a million views of our webpages (528,871) by 173,191 users over 241,663 sessions. 84% of visitor were new visitors; 16% returning visitors who would spend an average of 2:35 minutes viewing an average of 2.19 pages. We have a very busy website and already these figures are being exceeded. Want some more data? Ok:
1. UK (61.95%)
2. US (22.43%)
3. AUS (4.86%)
4. CAN (2.26%)
5. India (1.3%)
6. IE (1.2%)
(note this relates to access to the website not membership)
And for 2020 look out for a new updated and fully revised website with more interesting information on it.
My other involvement with NICE centred around the Guideline Scoping Meeting for Multiple Sclerosis. I had been invited to attend the meeting which would explore the issues surrounding the diagnosis and treatment of MS. As so many of our members are originally diagnosed as having MS (myself included) before being diagnosed as having Sub-Acute Combined Degeneration of the Cord Secondary to Pernicious Anaemia (SACD) I thought this would be an ideal opportunity to tell the doctors and researchers who were going to produce a new guideline on MS that it was important to assess the B12 status of patients to rule out SACD. At the meeting I made the point that this should happen but that doctors should be aware that the serum B12 test is seriously flawed and Homocysteine and MMA should be used alongside the Active B12 test. I was completely ignored. There were three Consultant Neurologists on my panel who took no notice of what I had to say. One even told me that my figures relating to the incidences of B12 deficiency were ‘seriously overestimated’. I had left home at 5am to get to the meeting in London by 10am. As I travelled home on the train a suicide outside Reading meant the journey was delayed by three and a half hours which added to my melancholy. I won’t give up but we need your help. Please tell your MP’s that the NICE Guideline needs to be made a priority and ask him or her to write to NICE to make the organisation take more notice. We in the UK have a new government and an awful lot of new MPs who will be hoping to help their constituents.
In January we began to make plans for our 2019 conference that would concentrate solely on the way in which Pernicious Anaemia is treated. It would be an opportunity for our research partners to convey to members and each other their latest findings. We were again disappointed to hear that, despite three re-submissions our application for funding was turned down by the Big Lottery.
Conference videos of all the presentations can be accessed here.
Now here’s a positive! Elise Dyer, one of our members who lives in France, offered to raise funds by running in the London Marathon for us. We duly applied for a Silver Bond place and we were successful. Elise embarked on a lengthy training programme and successfully completed the race raising several thousand pounds for us. When I asked Elise what she would like the money to be used for she didn’t hesitate to nominate the filming and live-streaming of the conference. And so, it was thanks to Elise and her sponsors that we were able to record and broadcast the December conference. Elsie is now a Trustee of the society and is busy organising several fundraising events for the next year.
If you are interested in taking part in any fundraising event please contact her by email.
As in all other years, 2019 was a matter of two steps forward and one step back. But we are getting there.
On behalf of everyone at the PAS, I wish you and your families a Happy and Prosperous New Year.
Please let us know if you would like to attend one of these meetings by sending an email to the event organiser. Their details can be found here. These meetings are a great way to meet fellow sufferers and make new friends – and remember it’s all free.
Want to make sure you will receive invitations to upcoming meetings in your are? Update you email preferences here.
NEW SUPPORT GROUPS
New groups were started by our member in West and East Sussex and Bedfordshire and meetings are being planned for the new year.
We’d love to expand our network of local support groups. The society can help by emailing an invitation to all members within a certain geographical area and promoting the event on our website and social media, but it takes someone special to find a suitable venue and organise refreshments etc. If there isn’t a Support Group in your area you may want to think about starting one up.
Check out what others have done for the Society and how to start your own fundraise event or if you want us to promote your event on our Fundraising page, News page and social media.