Meeting on 24th March

[liz2mac]

Hi all,
sorry for the delay, I was absolutely shattered when we got home and then up in the middle of the night to take poorly baby grandson to hospital with his Mummy.
I cannot say it was an easy meeting. There were several people who seemed to object to the fact that UKPIPS is a support organisation and not wanting to get into medical research. Others who were quite vociferous about the fact that they hadn't heard about us (we have only been going 12 weeks and as I said to Emsy some time back, the impossible we do every day!) Anyway, long and short of it is that John gave the presentation immensely well. I answered questions afterwards. Rita & Steve ffoulkes were there to support us which was SO welcome. The main thrust of the day was in trying to get the small disease specific organisations together in order to form some kind of united organisation. I stated that UKPIPS wpould not join an umbrella group, but that we would join an alliance. A lot of those present could't see the difference. However, an umbrella group, such as the PiA was, is constituted in order to go off and take decisions by itself. An alliance should be governed by its constituent groups. I am on the steering group for this and when we have advanced it to the point that we have somthing to discuss with you all, I will post the info both here and on the website. My main concern is that several ex PiA people (Rae McNairney who was a trustee until Feb of this year amongst others) have also been co-opted to be on this steering group. I am not happy about this, I'd be interested in your feed-back. I will be postuing a summary of the day, by Dr Edgar, on the website for you all to read. I suppose the main thing is that we have been accepted as the disease specific group for Primary Antibody Deficiency.
Thanks for all your kind thoughts and support.
Liz

[john]

go liz... well done you two!
i read another synopsis of the day posted on facebook, it's great to have your interpretation as well.
the steering group sounds a bit same old same old, or does it? i'm confidant that you being on it will put our best interests first.
the alliance idea is one that i will support, and i still think the only research we should get into is to offer our own experiences/lab numbers for analysis when required - we could never raise enough funds to keep a decent research team in coffee, let alone anything else.
i hope there was a good outcome for your daughter and grandson, these things do happen at all the wrong times don't they?
so, well done once again... have a good, well-earned rest now before launching yourself into the fray again!!
take care - john

[mali42]

Hi Liz
That goes for me to well done Liz and John.
I don't understand why some people would object to UKPIPS being a support organisation only and not wanting to get into research.

If we do this ourselves we can go on forever helping new pid which we all know is vital when first diagnosed and where would we be now waiting for a new pia to emerge (in limbo)
i hope your grandson is better now.
Malcolm

[davidwaldock]

*first post*

Hello everybody

Many of you will know me, and if you ask I'm quite happy to tell you more about me but there are three main reasons I'm here: first, I was diagnosed with CVID 10 or so years ago, and second I was co-opted onto the steering group for the new national patient group, having attended the meeting on Saturday, and third, Liz MacCartney invited me to join the forum.

I was one of those who is of the opinion that the difference between a group which is accountable to its constituents (whether as condition-specific groups, locality-based groups or individual members and donors) and one which is not is a constitutional question. If the constitution has an accountability mechanism then regardless of whether it's labelled an alliance, an umbrella group or a federation, the group is accountable. Certainly, there were issues with accountability previously but whilst we should learn from the past, this doesn't mean we should obsess over errors made by different people previously.

Everyone present on Saturday - including Liz and John - agreed that collaboration is vital to effective representation, and as far as I can see if such a mechanism can be negotiated to the satisfaction of all the parties involved, we shouldn't get too hung up on names.

I'm willing to stipulate that perhaps we shouldn't use the leaky umbrella device though ;-)

On the subject of research, I have slightly mixed thoughts on this issue. I always did have a problem with having large pots of cash raised by patients and donated to researchers. However, I'd like to bring a slightly different perspective to this.

First, I think it's vital that patients are actively involved in the entire research lifecycle, what is termed "upstream engagement" in the industry jargon. That is to say that patients should have a strong voice in setting the direction of research, reviewing the ethics of projects, helping to develop protocols, undertaking research and disseminating results. With patient involvement comes both power to direct the research to benefit patients and a responsibility to ensure that resources are well used.

Second, there are lots of research projects which are anything but "major". Registrars in training, particularly in clinical immunology, are required to undertake small scale research projects in order to demonstrate understanding, to develop knowledge in the field and to help enhance their personal research prospects. These projects are normally quite small in scope (less than £10K, which is small, although I will grant you it's still a lot of money). However, since the major funding bodies typically issue grants of £50K up, this could mean that the very people who undertake very practical, patient-oriented projects may lose an important source of funding.

None of this means that any particular group necessarily need fundraise for research (I hate fundraising myself!), but patient research involvement - and not just as subjects! - is absolutely vital to effective representation of patients.

As a result of being co-opted, I've started blogging my thoughts on various aspects. As I said on Saturday at the meeting, I have been known to be wrong, and I would welcome your ideas, corrections, input and comments on my thoughts. There are two posts in the series so far (davidwaldock.wordpress.com/2012/03/25/representing-patients-with-primary-immune-deficiencies/ and davidwaldock.wordpress.com/2012/03/26/who-should-be-represented/ - I think the second is quite important!), and there are more to come.

This is not instead of talking to UKPIPS (I'm sure Liz would welcome your comments!) or instead of the questionnaire-driven consultation which will likely be issued by the steering group, but my personal thoughts at this time. It may be I have misunderstood issues, in which case it'd be to my benefit if my errors were corrected before the next meeting of the group.

In respect of other members of the steering group, there are representatives from each of the 7 patient groups that were present on the day, 3 representatives from regions (Scotland, Northern Ireland and West Midlands), and 8 independent members. I welcome a diversity of opinions and perspectives, especially ensuring that regions not easily represented have a voice.

For the record, I don't see participation in the steering group as necessarily being indicative of future involvement in management of the organisation beyond setting it up. My personal priority is to ensure that the who, the what, the how, the why, the where and the when is right, and to ensure that patients are empowered and at the heart of the organisation.

Thanks for reading what I appreciate is a long message.

D

[slf]

David welcome to our forum.
You certainly have jumped straight in,I was interested to read your 2 blogs,I too was at the meeting on Saturday.
It did appear that many PID patients were unaware of the meeting,and perhaps we should all be wary of representing views of 'all' patients,but I didn't hear any suggestion how this silent majority might be reached. They wont respond too a web page they don't know exists,and at least 1 hospital refused to contact all their patients(on grounds of costs),so it appears that we should all carry on and hope our efforts eventually attract their attention.
I for one was a little unhappy at the appointment of delegates,as many appear to only represent their own personal views(some valid but unsupported).
One of your suggestions that SID patients be taken on board,drew a sharp intake of breath from me. The fact that PID patients numbers are comparatively small seems to be forgotten. The idea of a forum and UKPIPS is that by coming together we can overcome the loneliness of suffering a rare and often misunderstood illness just as the other representatives of even rarer illnesses were represented,carers and patients are the only ones with an understanding of the day to day worries. Their is great strength in that smallness of numbers,I for one drew massive inspiration from those charities with very few members who were all clearly so strong and supportive,I think we should follow that path,and not look to gather more to us and dilute our strong strong unity.
Sorry going on too long and far too serious,that isn't like me at all.perhaps you've hit on something,no harm in that
Steve

[bamber]

What do you mean by SID? Secondary Immune deficiency like people affected after chemotherapy for instance? Or something else?

[bamber]

I have read the blog now and see this is what it means. But they are far too varied for us and I believe outside our scope. Also they have separate people already supporting them.

[liziJ]

Hi everyone,

David, trust you to put the cat amongst the pigeons! :-)

I have to say I'm with Bamber on this one. It's nothing to do with people not being "welcome" but people with SID are, by and large, likely to have very different experiences, health issues and support needs to people with PID.

I also agree with Steve in that through UKPIPS and formerly PiA I felt strength and solidarity in being part of a relatively small group of people that all suffered from related rare conditions. If we were to include a range of people with SID I think there's a danger that those of us with PID would end up feeling marginalised. So many of our big, common issues would not be very relevant to people with SID ... the long road and struggle for diagnosis, for example.

If we were to include people with SID then in a way this could negate the need for us to even have our own organisation. If the argument is that people with SID face some common issues with us so should be included in our organisation, the principle could work both ways: what would stop someone arguing that we, then, should join AIDS/HIV support groups instead of "wasting" time and resources on our own group?

That's not to say there cannot be exceptions to the rule. If someone with, say, Goods Syndrome, contacted UKPIPS to say they have a SID but feel they have a lot in common with people with PID, and would like to be part of our collective experience and support - I cannot for a minute imagine that a single one of us would turn them away or tell them they're not welcome.

But generally I feel strongly that our organisation should be FOR people with PID, ABOUT people with PID and run BY people with PID.

Lizi

[bamber]

Mar 27, 2012 18:57:09 GMT @davidwaldock said:

You might want to tell the person on this forum who I know has a SID that they're not welcome.

As I don't have access to everyone's records - I don't think I will even consider this. You obviously know more than me. You asked for opinions - don't get upset if you don't agree with the answer. We are all individual and I don't know everyone. Maybe there is a good reason to include - but without the facts how should I know. I was always involved with people with mainly CVID. I don't pretend to know every thing.

[mali42]

The person with goods syndrome has more in common with PIDS than SID and would not get the support and advice if they were on a SID forum as it is a very rare condition,

So common sense has to be used in these cases and I agree with Liz who put it so much better than I could.
Malcolm

[bamber]

OK. But it was about SID in general. I am not a medical person - so how would I or anyone else know what every condition is? I have friends with HIV and seen friends go through Chemo - they have so many different issues and remind me too. I am ready to be educated - but without details I and many like me would just see the general head line.

[liz2mac]

Hi David,
Thank you for taking up my suggestion of joining us. As I said on Saturday, if you feel we are doing somthing wrong, then the way forward is to join us and put forward your opinions. If the majority of UKPIPS members agree with you, then that would inevitably lead to policy change. As to secondary immune deficiency. David, please don't provoke, you know as well as the rest of us that primary immune deficiency is a problem unaddressed anywhere but by specialist groups. That was the whole point of the meeting on Saturday. Whilst those living with a secondary immune deficiency are welcome to follow our forum and draw any help they can from it, this organisation is constituted to offer support for PAD & PID (primary antibody deficiency and primary immuno deficiency). We must concentrate on this disease specific need, just as the other organisations represented on saturday concentrate entirely on the specific diseases that they are constituted to offer their service to. As to research, none of us at UKPIPS in any way disagrees with your statements and a lot of us would support an organisation set up to fund-raise for research into PAD or related PID's. May I suggest that you turn your undoubted enthusiasm and drive towards starting such an organisation? I am more than willing to "enable" you to do so. Be warned though that this would be time consuming, expensive and you will inevitably open yourself to criticism from others who feel you are not doing it the way they feel you should; and tell you that you are not representing them in what you are doing. If after this warning you still want to go ahead with putting all your resources (time/energy/money) to setting up a charity for research, be assured of my very best wishes and accept all of the advice and information that I am able to offer you. Maybe you could include secondary immune deficiency in this charity? Message me on this forum if you would like to take this idea further.
Best wishes
Liz

[davidwaldock]

I think it's disappointing that a group of people who are under-represented and excluded are seeking to exclude a group who even less represented.

I'm incredibly glad they wouldn't be turned away, but I think they deserve more than to be hanging on to our coat-tails and to have more than the scraps from our tables. Obviously I'm not suggesting that this should be the role of UKPIPS, but I wonder if we shouldn't consider them at a national level. It would be good if they had a voice, but equally I don't want to impose on them.

[slf]

I am sorry David I don't understand your point at all,if you joined a football club you would'nt expect to include the rugger fraternity splendid as they are,its a different game,it's not shunning them or discriminating against them.Perhaps i dont understand the point you are making am I missing something here?
Steve

[bamber]

I think he is talking about Goods syndrome - which now I know a bit about I can understand the need - but I didn't before. But as far as the the other SID's I know about. I can't see see them including themselves with us any way.

David you are going a strange way about asking for opinions and comments. You really are. We are ready to listen - but we are here because we have a rare condition and we need support.

[liziJ]

Mar 28, 2012 5:55:19 GMT @davidwaldock said:

I think it's disappointing that a group of people who are under-represented and excluded are seeking to exclude a group who even less represented.

I'm incredibly glad they wouldn't be turned away, but I think they deserve more than to be hanging on to our coat-tails and to have more than the scraps from our tables.

I didn't see anyone saying this is what they want? I'm struggling to understand why this is such a sticking point for you David - rather than all of us discussing, debating and hopefully eventually agreeing on the priorities for people with PID?

I'm also not sure about your comment that people with SID are even less represented than us? I can, for example, think of at least one very high-profile charity specifically for people with HIV/AIDS, as well as a plethora of smaller charities working to support people with HIV/AIDS in a number of areas. Likewise for Cancer patients who are experiencing SID as a result of Chemotherapy.

Obviously I am only guessing, but I would imagine that for the vast majority of illnesses and conditions that lead to people having SID, there is a relevant support organisation.

I know that Goods Syndrome has been mentioned a few times, which I know is incredibly rare and so probably doesn't have its own patient organisation. So can I clarify David - is your issue ONLY regarding anyone with Goods Syndrome or are you looking to include all/other people with SID?

I also don't understand what you mean by "considering them at national level". I don't know if I'm the only person who's unclear on exactly what outcome you'd like David, but maybe if you could explain a bit more clearly exactly what you would like to see happening it would make it easier for this discussion to move forwards?

Lizi

[liz2mac]

David,
This forum is set up to support each other, not to make people feel uncomfortable or to be devisive. Your posts are doing both. Please contain yourself on this forum to peer support. If you have issues about whom 'A PID Organisation' represents please contact the 'A PID Organisation' trustees, whos nmes you can find on the website.
Liz

[liziJ]

On a different note but following on from Saturday's meeting - Liz, I know Dr Longhurst is already involved with UKPIPS but I wondered if you had discussed the organisation with the other immunologists? If so, what exactly do they know about us?

Lizi

[willo]

Hi all

David Waldock has a very unfortunate way of stimulating discussion, I remember some of his posts, usually challenging someone's believe in anything that was outside of scientific method; or undermining moderators advice on the PIA forum not to exchange personal details in posts.

As Lizi says there is support already in place for people with some SIDs. Would a person with cancer want to join UKPIPS for support? I don't think so. The same goes for people with H*I*V/A*I*D*S.

What we should do as a community is provide links to appropriate support groups on the UKPIPS website.

The members of this forum, I'm sure, will welcome anyone with an interest in PID whether sufferer, carer, with similar symptons or just interested in discussing the day to day issues faced by us.

On the other hand UKPIPS is the responsibilty of its trustees but, I'm sure they would discuss issues with UKPIPS members before making far reaching decsions.

As a member of UKPIPS I am satisfied with what it has been set up for; equally as a member of this forum I am very happy with the contributors' positive input.

[liz2mac]

Hi all, I'm away for a few days, only iPhone access, so short replies. Lizi, the immunologists were sent a full detailed letter about UKPIPS & who we were, what my background in Not-for-Profit world is. The few who did reply said they were waiting for last Sat meeting. The impression I got was that they would feel their skills best used as reps on medical panel for umbrella rather than select disease specific group. UKPIPS is currently concentrating on antibody deficiency as we simply don't have resources to care for all pids