What a Great Day

15 Dec, 2016

Pernicious Anaemia Society

The conference has been voted a huge success; not only by those who attended as patients but also by the medical professionals and other scientists who were there.
Last Saturday, the tenth anniversary of the society being entered in the Charity Commission’s Register. And we celebrated by bringing together all of the researchers that are leading innovative investigations into the diagnosis and treatment of Pernicious Anaemia. The brief given to the researchers were that they should keep their presentations as simple as possible in order that all attendees could understand what was being said. And they did a tremendous job; using plain English to explain what is necessarily very complicated science. The evening before we had hosted a dinner for all speakers and that was the time when the guest speakers were able to explain in more detail what they were doing.
There was a great buzz in the room throughout the day; but sitting listening to the presentations was just part of what was going on. Delegates had the opportunity to speak with Employment lawyers about any workplace issues they were having and there was a representative of Thyroid UK who was at hand to offer advice about this common comorbid condition. And the publisher Hammersmith Health Books was also there selling copies of various publications including all three books by Martyn Hooper, the current Chairman of the society.
The event was serviced by a 6-man film crew and three cameras. One of the cameras, was dedicated to conducting interviews with the speakers and any delegates who had a story to tell. These interviews were conducted by Alastair Greener and will be used as the basis of a documentary that we will be making in 2017.
Delegates had ample time during the tea/coffee breaks to share their experiences of diagnosis and treatment with other sufferers and all had a conference ‘goody bag’ consisting of a pen, diary, notepad, trolley key-ring, lapel badge and window sticker. All of these will help raise awareness of the society’s existence.
We’ve had some excellent emails from the speakers with all of them stating that they had learned something from the event. And at least two new collaborative research programmes are now in the pipeline.
We plan to hold the next conference in 2018 if we can access the funds.
What was disappointing was that 23 delegates didn’t turn up. Whilst three people told us that they would not be able to attend, twenty just didn’t show. Which is a shame because we could have easily sold their tickets.
Roll on 2018! Goodness knows what we will have achieved by then!

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4 Comments

  1. Trudy Stone

    Glad to hear it went well. Am looking forward to the do co. I hope it will air world wide.

    Reply
  2. Jason Levett

    Great to know this was a success. Sadly work commitments meant I was not able to book a place.
    It’s taken months to get diagnosed but only with B12 deficiency, the cause is still a mistery. Many issues with GPs just not recognising symptoms and being over reliant on blood tests that they don’t understand with no one apparently knowing anything about functional B12. It’s a learning exercise for many GPs and they have a lot of learning to do.
    It took 4 months to be formally diagnosed by a haematologist at King a College Hospital before the NHS would entertain treatment. The haematologist was very sympathetic to my condition but also to previous specialists who did not recognise the condition, partly because most of my symptoms were not readily recognised and not well documented for B12 deficiency.

    Reply
  3. Michelle Cheatley

    Great venue, Good food, Very informative day.

    Reply
  4. Christine Reeve

    Definitely a great day with opportunity to mix with other sufferers as well as professionals who were very willing to answer queries and listen to people’s stories. Presentations were clear and informative and it is so heartening to know that PA/B12d seems to b coming out of the dark ages! Thanks to all who took part in making the day such a success – most of all for the hard work put in by Martyn and all at the PAS offices. Hopefully another can be arranged for end of this year or early 2018.

    Reply

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