Meeting on 24th March

[liz2mac]

Many of you will have received an invitation, sent on to you by your treatment centres, from Dr David Edgar, for a meeting to be held on 24th March.
I have been very dubious about attending this as I could not see how it would further the work of UKPIPS. However, people whom I respect advised me that it was important for me to attend and I have said that I will go. However, I have just received the final agenda and I am concerned by it. I and the five other people representing various Primary Immune Disorders have been given ten minutes each to speak about our work, Rae McNairney and Kathryn Hennessy (who were PiA trustees until the end of February) are also speaking about their work in Northern Ireland and Scotland. Fiona Sandford, who is / was the president of the PiA has been given an half hour slot to talk to us and Dr Helen Chapel, who was for many years the chair of the PiA medical advisory panel is also to speak for half an hour. Since the only reason I will be attending this meeting is to speak on nehalf of UKPIPS members, I would be very grateful if you would give me your opinion about all of this. Please post this on the board so that it is available for everybody to see.
I will attach the Agenda for you all to see,
Thanks for your input,
Liz

Attachments:

[crocker]

I have not heard anything about this

[bamber]

Me too! Not heard from Salford Royal! New name for Hope Hospital!

[willo]

I have not heard about it either.

What format is the agenda in? My word processor nor Acrobat could not read it.

[s162216]

Hi,

At the QMC we were all shown a copy of that letter about this meeting when we went for infusions but as the specialist immunology nurse put it, it was asking for approximate numbers but with only 5 weeks notice how was supposed to do that considering that there were no details about venue, times etc?

I would like to go along to it but I've got to get the train to Glasgow from Nottingham the next day as I'm going on a Home Office Small Animal handling course that I was nominated for and accepted onto! I might be able to go along to the meeting on the 24th but I'll think about it over the week.

BTW, if your trying to read the attachment Liz has put up you need to rename the extension to '.docx' to let it be read. When you download the file add .docx to the end of the file name and word will be able to open it then.

Sam

[slf]

I think the point that strongly needs tobe made is that patients want to support one another,the role of doctors will always be important, but the sort of support we receive from each other in this forum is invaluable.
For myself i never meet similar (CVID) patients or even a specialist nurse,and only see a specialist every 6 months its terribly important to have this human contact with people who understand some of my problems.
Additionally doctors have been far from supportive to me in the past, so perhaps I have good reason to be reluctant to jump into bed with them now(not literally)
Hope all that made sense
Steve

[willo]

Thanks for that, Sam.

The reactions to the invitation seem to illustrate that the issues that are eluded to in the "PIA: What's the problem?" need to be addressed.

It is essential that Liz attends the meeting and guides the discussion in the direction of dealing with the issues.

One of the issues seems to be that too much money went on research and too little on day to day support for 'zebras'.

If we are not represented at the meeting we cannot have a voice nor influence any outcomes.

[liziJ]

Hello!

I did not receive an invitation to this event either, and in any case wouldn't be able to attend (it's my children's 3rd birthday party on the 24th!). I'm really feeling quite confused about the whole "us and them" scenario that seems to be emerging and by all the different things going on.

My nurse specialist DID email me an invitation to an event in London on 21st April called the World Immunology Day 2012 Educational Symposium for Clinicians and Patients. It says in the accompanying booklet that it's been arranged by the Immunology teams from Royal Free Hampstead NHS Trust (RFH) and Great Ormond Street Hospital Trust (GOSH), the Institute of Child Health (ICH) and Barts and the London NHS Trust (BLT). I don't know whether it's only for us patients who are treated at one of those centres?

The day is co-chaired by Hilary Longhurst (who I believe is *with* UKPIPS?) and following a very interesting-looking programme of talks, there will be workshops - one of which is called "Patient Support Groups: The Way Forward". It says this workshop will be lead by Hilary and "Patient group representatives (TBC)".

I'm going to be there as it sounds like a very interesting day. But I wondered how many others have been invited and Liz, whether you know about it? Or John, you might be able to shed some light.

I'm not sure how to do attachments on this forum, but if any of you want me to email you the patient booklet for the event on the 21st please do let me know.

Lizi

[gilliem]

I haven't heqrd a word about any of this, and I'm at Southmead hospital in Bristol every 2 weeks. I would suggest that information isn't being disseminated very well!
Best wishes,
Gillie.

[liz2mac]

Thank you all for your posts so far, Willo, noted and understood. Sam, WELL DONE for being invited to attend the mmeting in Glasgow re animal handling course. This, of course, demonstrates one of the issues. UKPIPS should enable us to live our lives to the full, not prevent us from doing so. Thank you Sam for expressing a wish to attend on Saturday. Lizi, the meeting in April is quite seperate and has been organised by the some of the Hospitals in central London who treat PID people (zebras!!) and is a totally seperate and very welcome event which should be interesting and stimulating for all of us who attend.
The meeting on this coming Saturday (March 24th) is really a mopping up operation following the demise of the PIA. Dr Edgar has taken a main lead in this and I am afraid the issue which concerns me most is that it has not been organised by patient groups, for patient groups, but has been organised by a Dr's organisation who appear to be heavily influenced by the PiA. The Chairperson of the PiA has stated that he and his fellow trustees of the PiA will hold a meeting after this Saturdays event in order to "award" their chosen organisation the assets of the PiA. Personally I want nothing to do with these assets at all. Event their contentious mailing list of members is of no interest to us. I know that it was very out of date and I would rather we reached people through our internet activities and through the centres that treat us all. However, the two things that may hang on this meeting are whether or not the majority of Immunologists chose to work with us and whether or not the pharmaceutical companies will support us with some sort of financial assitance. All of this would not be an issue if we, the charities currently working for all types of zebras were in contgrol of the agenda and speakers lists. We are not, we were not wvwn consulted as to whether this date was appropriate for us.
So, to summarise, I feel that this meeting has been organised by the PiA who are hiding behind Dr Edgar and UKPIN (google it), with a possible intention of the PiA having a big say in how the zebra's support organisations are constituted from now on. They want an umbrella group to emerge. I don't want this. No way should another organiosation over whom we have no control be able to represent our needs at government level or be able to gain funding on the basis that they are representing zebras.
Any way, please continue with your comments, I really need to know your opinions and thoughts on all of this.
Liz

[slf]

I note that as a further business beneath the agenda,it offers the opportunity for suggestions for further discussions.
Might it not be pertinent to add a suggestion of our own, to perhaps forgive the past ills of the PIA and offer admittance to our own Medical Advisory Panel as an honoured position of trust.
Of course such acceptance does silently accept that there were indeed ills to forgive.
I am sorry if this appears devious but it could reconcile so many things
Steve

[liz2mac]

That is wise advice, however all of the Dr's involved (apart from Dr Chapel who is now retired) were indeed asked if they would like to be a part of our MedPan. We are still waiting to hear from them some two months later............................
Liz

[mali42]

Hi all
Well done Liz for your talk on 24th, I'm not sure if ten minutes is long enough to put our point across,
PIA did some good things and not so good from what iv read but I just want to look forward now and ukpips seems to be the way as only we truly know what being a pid entails so we need to push it forward but its still early days and hopefully in a few years or sooner it will be more recognised as a good thing by the immunologists nurses etc,

That is dissapointing about the Dr's involved not even replying to being a part of medpan maybe thats something you can bring up at the meeting.
Malcolm

[ssoneil]

Whilst the acquisition of old PIA assets might not be top of our agenda, it would still be helpful to know what is going to happen to all past patient data collected through the PiA. This shouldn’t just be ‘awarded’ to an organisation on the basis of a 10 minute presentation.

UKPIPS is a patient led organisation, representing the interests of patients. However, with the ‘right’ support from the ‘right’ Doctors, I would actually be in favour of seeing any funds that we do generate being evenly distributed between patient support and supporting the research of the Doctors that have shown courage and supported us.

My point is the money we raise shouldn’t be pushed entirely into patient support, nor should it go entirely to research. It would be sensible to find a happy medium.

Good luck at the meeting on Saturday!

[susand]

Hi,
With reference to Lizig's message about the World immmunology day symposium on the 21st April (which is patient's Day, clinicians day is the 20th) I rather think it has been organised by the hospitals named on the cover of the invitation and is directed at all immunology patients of those hospitals only. So it is an individual (is that the word I need? I have corrugated cardboard acting as my brain today), not a national event, and funding has been sought for it. As Liz says, it sounds a very interesting agenda and I have put myself down for the workshop on patient support.
I guess this has been an initative of these hospitals, designed to coincide with World Immunology day and other centres could have organised functions if they had so wished.
As regards the meeting on the 24th March - well, this is the first I have heard of it too. No news, no invitation.

Sue

[liziJ]

Liz and Sue, thanks for clarifying about the 21st April - as I said, I think I was getting very confused about the whole situation. I'm really looking forward to it.

I wonder if there will be an opportunity for UKPIPS people who are there to briefly get together? Would be nice to start putting some faces to names!

Lizi

[s162216]

Hi,

Unfortunately I've decided that I'm not going to the meeting now - things got a bit hectic yesterday (long story involving writing a formal report, not being able to print the last 5 pages and running about 250m at top speed to another building and up to the third floor in about a minute and half to submit it 30 seconds before the recipting desk shut) and I need to get ready to go to Glasgow tomorrow. Shame as I was really hoping to go.
I will definitely go to any any similar meetings in the future though should there be any.

Sam

[mali42]

Hi Liz
I hope the meeting went well yesterday and you feeling ok after your recent infection.
Malcolm

[john]

same from me too liz.
tell us what happened when you can
take care - john

[liziJ]

Yes I'm dying to know what went on! Hope it wasn't too painful for you Liz ...?

Lizi x