Quicktopic posts: Jan 2004

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ICE

Postby ICE » Thu 29 Jan 2004 7:18 am

Hi Phillip - Yes I also received the sae package through the post, I was keen on being a representative, I live in North Yorkshire. On reading all the literature, it looks as though if there are meetings in the morning I wouldnt be able to get there. plus would the committe listen to someone outside the area !! I am not su sure are you ? How do other people feel on this ?

Ali

Postby Ali » Thu 29 Jan 2004 10:57 am

Jason, I have attended the Eye Clinic and the Contact Lens Clinic at the Royal Hallamshire Hospital in Sheffield, since I was diagnosed with KC in July 2002, and I have had no complaints so far. They are very thorough and I have an excellent contact lens specialist looking after me. He is also being trained to fit scleral lenses by Ken Pullman from Moorfields Eye Hospital in London. If I remember right I think my CL Specialist said that Sheffield was the Regional Unit for KC referrals, but I could have misheard.

Anyway it might be worth a visit there, good luck and let us know how you find them.

Ali

umbilica@umbilical.demon.

Postby umbilica@umbilical.demon. » Thu 29 Jan 2004 5:42 pm

Hi Philip, "ICE", and everyone.


I've now read the package in full and had a chance to ponder it
a bit.


First, Philip said:

]It started off "Dear Member" but was addressed to "Mrs"
Johnson.^ I don\t quite understand why you think this is inefficient as we are all members of the Trust (and entitled to vote for a governor) after filling in the application form.

It's not being saluted as "Dear Member" that's the problem; it's the fact they can't get my name right on the envelope! I'm not
now, never have been and never will be a "Mrs" anything. It's
pretty incompetant to get people's names wrong, wouldn't you
say? - and when they've only just registered me on the members'
list.


As to the content:

Yes, one can be a "patient" governor and live in Yorkshire. Or
Scotland or the south of France (lucky person in this weather). Just so long as you are a patient at Moorfields. And they
specifically have this "patient" category for the out-of-London
patients in the hope of getting them more involved and their
needs heard. As I understand it, the people who are patients
and also live in London (or adjacent in the certain areas listed) are classed as "members of the public" in their local geographic area, and will be counted as the "reps"/liaison people for those areas. Unless, that is, they specifically opt to be counted as
a "patient" rather than a member of the local public.

[There are also two slots for reps of patient interest groups -
quite how these are organised is not stated. Does anyone know? Does anyone know if we (the KC Group) are officially on any list of patient interest groups? - and if not, should we be?]


And this is what strikes me the hardest! The people elected
seem to be there, as much as anything, in the understanding that they are going to be "ambassadors" or possibly PR people, for
Moorfields, and a large part of their job will be to make
contacts with interested parties, community groups, community
health reps, etc etc, in their areas, talk to them all about
what Moorfields is and what it does, and inspire them with
enthusiasm to get interested, get involved and become members
themselves.

And that's what worries me about the time! - because to do that
job properly will be a full-time job and a half, just in
itself. If the newly-elected governors take it seriously and
try to do a good job of it. I suspect some will and some ...
errrm, won't do anything much. If one is conscientious, though, that will take far more time than just trekking off to
Moorfields for three meetings a year.

As regards the time of meetings - they do ask, on one of the
pieces of paper, that you tell them any special concerns about
times/days etc of the meetings so you can get to them. they
also say they'll pay expenses - and I'd presume (though feel
free to ask) that if you live in North Yorkshire and need to
come down to London the previous evening and stay in a hotel,
they'd have to pay the bill for you (though not the honeymoon
suite at the Savoy!)


While I can fully understand that an elected rep from a
particular area would be expected to represent the interests of
their local community/typical patient who lives intheir area
(eg. around where I live, they'd be a high demand for
translations/interpreters in Asian languages, and concerns that
female patients should not be expected to be alone with male
practitioners), it does concern me that these elected reps are
apparently expected to put so much time, energy and resources
into promoting Moorfields and recruiting members. It smacks of
getting volunteer labour to do lots of leg-work for free in an
area of work for which they ought to be hiring paid staff (with
relevant specialist skills).

Of course, anyone should be free to encourage their friends,
neighbours, etc to get interested! - and any Council member
going to a meeting about Moorfields' service provision in a
local area should expect to be perceived as representing it.
But I have my doubts about the concept of giving elected reps,
who are otherwise there to oversee the work and policy of the
hospital, such large burdens of, essentially, the hospital's PR
work. For one thing, it smacks of exploitation of volunteer
labour. FOr another, the skill sets required are very
different. Keeping an oversight on the board of directors, and
of the hospital's policy and strategic direction, and
representing the interests of patients and prospective patients
in those discussions, is a different type of work, and requires
different skills and aptitudes, from PR and recruitment work.
If you try and get one set of people to do two very different
sets of work, the chances are that (at least) one of them won't
get done too well. And if they try (as it seems from the
paperwork) to stress the PR, recruitment work and encourage the
members to vote people in on the stength of it, then it would be no surprise to me if it is the management oversight that doesn't
get the skills and people it needs and the board of directors get left to do as they see fit - which may not be what the patients
would really most benefit from! Also, I suspect the PR
/recruitment work would actually not get done as much as it
might, simply because of how great a demand it is to place on
volunteers.

Philip:
Rosemary, what region are you be thinking of representing or
will you try for one of the three patient positions?

I live in London E10, so would come within the North-east London region. Though this non-existent "Mrs Johnson" has for some
strange reason been sent a pack with an application form for the out-of-London "Patient" constituency.

But I don't think I will, having read the stuff, because of the
emphasis on the outreach, promotion of Moorfields and recruiting new members stuff. That is:

a) I don't see that as being something for which I have
particular skills, aptitude or interest. I happen to think I'd
be good at the top-level oversight, and at representing views of established patient groups, but not the other.

b) I can't see myself having the time to put into doing th
eoutreach work well. I rather expect I'll be finding myself
working a lot in the evenings (when my clients are not at their
office jobs...) and that the required meetings with community
groups, etc, would likely be evenings too.

c) I somehow haven't the stamina for all that hassle it would
inevitably involve about having to contact all the organisers of all those community group meetings , some of them several times
or being passed round several people, about ensuring there is no flash photography in all those meetings, and making sure there
really won't be, and no doubt reading them the riot act about
how they are in contravention of the DDA and thus acting
illegally and need to pull their socks up when they come back
with the normal stupid responses. And after all that, some of
them won't give a damn and flashbulbs will start popping off
anyway ..... no thanks! I've little enough eyesight left to
lose, thanks.


ANother thing that strikes me is that I've seen absolutely
nothing in the paperwork, nor for that matter on the website,
that shows any sign at all of recognising the Social Model. Oh, of *course* it is a hospital, so medical/health care issues are
very much the bread-and-butter of the work of a hospital, and of **course** the availability and patient-orientedness of good
quality health care is very important! But personally, I've no
time for the Medical Model and have no wish to spend much
precious time in things which sound all too prone to get bogged
down into Medical Model stuff. I'd rather put my (finite)
energies into work firmly grounded in the Social Model (eg. my
union Disabled Members work, or the disabled women's group I
belong to...)


Anyone who is interested in standing for this, I wish you
well! Strength to your elbows in standing firm agains tthe
Medical Establishment, and all that. Do keep us posted on how
you get on.


Has anyone else been reading this and got any other, or further, views on this? ANyone coming to different conclusions about the outreach/recruiting work or the balance of activities?? (I'd
love to be convinced I'm misreading this!)


I wonder how many applicants there will be standing for those 17 positions?? - and did anyone else notice that though there are 3 "staff" position, there is not one mention of the staff unions?


Rosemary

--
Rosemary F. Johnson

David Bennett

Postby David Bennett » Fri 30 Jan 2004 5:14 am

Reply to "Mandy" who wrote..
"My sons KC seem to be getting better, does anyone Know why ? He is on drugs for his high blood pressure has this got something to do with it ?"

Mandy, as far as I am aware Blood pressure has no bearing on the curvature of the cornea. So I very much doubt that the medication has had an effect on the KC. I wonder if the origional diagnosis of KC is correct? as it *rarely* gets better, KC either stays static or more commonly changes to relect the changing corneal curvature. I hesitate to use the word "worse" as strictly speaking KC does not really "worsen it just changes...but that's just semantics and the beauty of the English Language I guess!)May be that your son has a hish astigmatism associated with a stable corneal ectasia (odd curvature. I have a few patients like that in my practice all of which are relatively stabll and despite me thinking.."this must change" at their next visit It rarely does!

hope that helps
David

Andrew MacLean

Postby Andrew MacLean » Fri 30 Jan 2004 5:27 am

Rosemary asked about folk getting her name wrong.

I agree with you, although I think your problem is more with the way they use your title, or rather the use of the wrong title.

Whatever,Ii take the view that names, and by implication titles that modify names, are deeply personal. To get a name wrong is either just careless (as it is safe to assume that the correct information was originally given), or just a way in which large organizations let ordinary people know that the organization feels itself more important than the person.

I have one of those complicated Scottish surnames; MacLean. You would be surprised by the number of ways in which organizations can get this wrong!

I also have an odd title, or rather Gerundive (a special sort of title the nature of which either modifies a title or attaches to my forename and not the surname). It too is often misused, so that hospitals have plenty of opportunity to put me in my place in their scheme of things!
All the best with the Moorfields Foundation status. Others of us may be following the same way in the future, so it'll be good to know how things are working out with you all.

Yours aye

Andrew MacLean
On 29 Jan 2004, at 22:42, QT - umbilica@umbilical.demon.co.uk (Rosemary F. Johnson) wrote:

>
< replied-to message removed by QT >


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