Winter 2019 – Volume 2 Issue 21

CHAIRMAN’S REPORT ON 2019

I’ve been told off, scolded, reprimanded and made to promise that next year I won’t be so frugal with my posts. If I have a failing it’s that I don’t keep everyone informed of what I have been doing on your behalf. I admit that my blog posts have been few and far between the past year and I can do nothing but apologise and promise that I won’t be so neglectful in the coming year.
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.
WEBSITE

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:

Source of Traffic by Country
1. UK (61.95%)
2. US (22.43%)
3. AUS (4.86%)
4. CAN (2.26%)
5. India (1.3%)
6. IE (1.2%)
Demographics of Website Visitors
Gender:
75.2% female
24.8% male
(note this relates to access to the website not membership)
Age of visitors
18-24: 8.51%
25-34: 20.14%
35-44: 18.98%
45-54: 19.46%
55-64: 17.85%
65+: 15.06%
Interesting stuff eh? More data is available such as referring sites but I think that’s enough to be going on with for the time being.
And for 2020 look out for a new updated and fully revised website with more interesting information on it.
THE HORSE THAT WON’T DRINK
meeting with NICEAt the end of 2018 we reported two major achievements. Firstly, the report that we compiled for the National Institute for Health and Care Excellence (NICE) had been accepted and we were pleased to be told that we had made the case for NICE to produce a Guideline on the Diagnosis and Management of Pernicious Anaemia. In short, NICE has agreed there is a need for a full review of how PA is diagnosed and treated. However, in August we were disappointed to not have made it onto NICE’s shortlist (what they call their commissioning stream) and so we would have to wait at least another year. It felt like the old saying that you can lead a horse to water but you can’t make him drink. However, we didn’t give up. I applied for a Bursary to attend the NICE annual conference in Manchester in April and met with the Director of Guidelines for NICE. I asked him what I could do to make our application a priority and would any political pressure be of any use. I was told that whilst NICE had other priorities any political pressure might help. There was a problem however; Brexit was dominating the work of all political parties and all politicians and so it was difficult to get the ear of interested decision-makers. We organised a Reception at the Welsh Assembly in June and received some very positive responses. And, in early December we received a copy of a letter from the Minister of Health for Wales, Vaughan Gethin to the Assembly Member of one of our members who had taken the trouble to write to her AM. The letter stated that the Minister had asked his Chief Medical Officer to meet with me along with the Chair of the Welsh Haematology Task Force in the new year. That will be an interesting meeting.
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.
CONFERENCE

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.

We did, however, have enough funds in reserve to carry on with the conference which was universally hailed as a success. Already three new research collaborations have been formed and we are looking forward to working with the research teams next year.
Conference videos of all the presentations can be accessed here.

Manchester Conference
In April I was back in Manchester to speak at another conference – this time on the ‘Challenges of Diagnosing Vitamin B12 Deficiency. This was organised and hosted by Axis-shield, the company that has developed the ‘active B12 test’. My presentation was based on the result of our survey of members’ experiences in getting diagnosed and was well-received.
Marathon

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.

TRIBUNALS AND APPEALS
I attended three Employment Tribunals and six Benefits appeals this year. These are usually quite traumatic times for our members and I can appear only as an ‘expert witness’ to tell those hearing the tribunal or appeal that, contrary to what most doctors believe, the symptoms of Pernicious Anaemia do not miraculously disappear once treatment is started but continue to affect the patient to some degree or other. In one appeal I was unable to attend and a simple ‘witness statement’ was enough to help our member. We have a 100% success rate at these hearings.
LOCAL SUPPORT GROUPS
These continue to grow; 5 new groups were started and we had 31 Support Group Meetings in 2019. We now have 15 groups in the UK of which the leaders arrange meetings and talks that help relieve one of the worst aspects of PA – the feeling of solitude. Karyl Carter will be taking over the administration and support of the support groups in the new year. We are hoping to arrange a meeting of all support group leaders in the Spring.

DOCUMENTARY
During the summer I travelled to various locations in the UK to record members of the society talking about how their Pernicious Anaemia has impacted on their work life, social life and family life. The film is now being edited and will be available in the Spring. Many thanks to those who agreed to be filmed.
NETHERLANDS CONFERENCE
In October I was invited to speak at a conference in Rotterdam on various aspects of B12. After my presentation it was good to meet some of our members who live in the Netherlands.
NEW MANAGEMENT STRUCTURE
Following a meeting with one of our members who has just retired as a Management Consultant we will have a more formal management structure in 2020. The major problem is that our management team are from all over the UK. Now, using specially designed software, those volunteers who carry out a role for the society will have their duties carefully mapped out and be able to communicate with others on the management team – something we haven’t had the luxury of before.
CARDIFF METROPOLITAN UNIVERSITY
We forged new links with Cardiff Met this year when a team of four young designers collaborated with the society to produce posters and other hard copy media to highlight the problems with the diagnosis and treatment of PA. The group also designed media interfaces that will be used to raise awareness of the disease. One of their classmates – just 19 – surprised the team by announcing that she was eventually diagnosed with PA in her teens but only after suffering for many years undiagnosed.
HELPLINE
We continue to offer a telephone helpline service to our members between 8am and 12 noon on Tuesday, Wednesday, Thursday and Saturdays. In December, four of our members attended a Training Session to learn the do’s and don’ts of taking calls and I look forward to them putting their newly acquired skills to work in the new year.
OTHER
The above is just a snapshot of what’s been happening. The telephone calls to the helpline are the most time-consuming. Most calls last around 45 minutes and we get around four a day. The tribunals and appeals take up most of the day and have to be prepared for and written evidence gathered and collated. The most important issue for 2020 will be to ask our members, now that Brexit has been sorted (well sort of) and there’s no General Election on the horizon to contact their elected representatives both at regional and national level to ask them to write to NICE urging them to make our Guideline on Pernicious Anaemia to be made a priority.
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.

2020

Upcoming Events

There are no upcoming events at this time.

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.

Please contact us if you would like any further information. More information can also be found here.

We are tremendously grateful for all those who make particular efforts to raise money for the society. Sky-divers, Marathon Runners, Bake-Offers, Walkers and Swimmers have all helped raise much-needed funds for the society. Please let us know if you would like to participate in any event and would like a t-shirt or running vest to help raise awareness amongst the general public. You can also get yourself sponsored whilst raising awareness and fundraise for the Pernicious Anaemia Society.
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.
SEARCH THIS WEBSITE
FOLLOW US
Subscribe to our latest news and stay updated!

Pin It on Pinterest

Share This