Chair's Update

Chair’s Update – What’s been happening

25 Jan, 2020

Well, I promised you in my report in the last newsletter that I would keep you all better informed of what I’ve been up to and so, here we are, in the third week of the new year and I’m keeping up with my New Year’s Resolution and sitting here writing about what has been happening.

Telephone Helpline

Firstly, I want to say a big thank you to our new Telephone Helpline Volunteers who attended the training session back in December and who are now taking calls from those who are seeking information and advice. And it’s not only members and other patients who call, we’ve taken calls from a Haematologist, Paediatrician and several GPs already this year.
The participants in the training session found the module extremely useful and gave them the confidence to begin taking the calls – some of which can be extremely harrowing. How it works is the volunteer tells us when he or she is available to take the calls and then we divert the calls to the helpline during those hours.
We are thinking of holding another training session so if you are interested in helping to man the helpline and were unable to make the last session please get in touch.

Meeting with Chief Medical Officer

One of our members from Cardiff wrote to her Assembly Member back in the Autumn asking her to write to the Minister for Health in Wales and requesting that he contacts NICE to urge them to make the Guideline on the Diagnosis and Management of Pernicious Anaemia a priority. The Assembly Member had a reply stating that the Minister would be asking the CMO to meet with this society. An hour-long meeting has now been scheduled for Wednesday 26th February and I’m busy putting together a briefing pack for the Minister and the CMO. More on this in the next update.

NICE Guideline on Multiple Sclerosis

The Draft Scoping Consultation on MS has now been published and I’ve been asked to comment on it. We know that a great many of our members who have developed neurological damage due to late diagnosis were originally investigated and even diagnosed with MS, and so it’s important that we raise awareness of this and that it is addressed in the Guideline. I will be commenting for the PA Society but if you would be interested in taking part in the development of this or any other Guideline as an individual you can find out more information about how to do so by clicking here.

Support Groups

Karyl has now taken on the role of being the Support Group Coordinator and will dedicate her time to providing information and support for existing and emerging groups. We are busy producing a Do’s and Don’ts leaflet that will help to provide a framework within which the group will operate, and we are planning on holding a training session for existing and potential group leaders in the Spring as it’s important for us to protect the PAS brand and support our volunteers. Find out more here in our recent news post.

Quiz Time

Our finances had an unexpected boost in the new year when the organiser of the Prince of Wales Pub in Coychurch, near Bridgend, contacted the office to tell us that they were going to give us £750. The pub holds a regular quiz night and every year presents cheques to local worthy causes. And this year we were to be one of the worthy causes. I went along and received the cheque last week. Our thanks to all the quizzers for thinking of us. I even put on a jacket and tie for the event!

Tribunals

I’ve already been asked to attend a PIP Appeal as an expert witness next month – the first of this year. Because we don’t charge for me appearing, we have had to ensure that people are not joining the society just to make use of me and so we now have a rule that we cannot appear on behalf of members unless he or she has been a member for 6 months. Having said that, if there is genuine need, we can be flexible on this. We ask that my travelling expenses be reimbursed along with the cost of any budget hotel stays if necessary.

Patient Safety Transitional Research Centre

Now here’s an interesting development by Manchester University who contacted us at the end of last year. The Patient Safety Transitional Research Centre wants to investigate and research the impact of PA on patients, and as part of their application process for a grant they have teamed up with a local artist, Emma Barnard, to produce an artwork to support their application.
They are holding an event on March 11th 2020 at the Manchester Meeting Place between 10am and 3pm. They want patients with PA to tell the artist about their experiences to help produce a visual depiction of your experiences to show to health decision makers. They can pay up to £25 for travel expenses and you’ll get a £15 voucher for attending. Oh! And you get free refreshments.
This will be a great way to catch the attention of health decision makers and make them aware of the problems with the diagnosis and treatment of PA so if you’d like to attend please contact Dr Natasha Tyler by email.

Update

New Management Structure

A meeting was held last week (20th Jan) with Petra Visser, our website-manager, and Stephen Ganter, a member of the society and recently retired Management Consultant and me to discuss a new potential management structure of the society where people working with and for the society would become aware of what different people were doing and easily access all the information needed for their work. The meeting was extremely successful and the new management tools and facilities are currently being developed and implemented. More of this in the next update.

1 Comment

  1. Anne Jones

    All good I’m sure but sitting here reading this after having been diagnosed 15 years ago I just want to scream and shout
    “help! Get the GP’s clued up to active b12, to properly understand the frequency of jabs, testing for folate and other deficiencies like Vit D and HURRY.
    And remember people like me would love to join this and that and go here and there but we hardly have the energy to exist!!!!!”

    Reply

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