Saturday, July 19, 2008

Patients' Presence Counts (and other NICE case info)

PATIENTS' PRESENCE COUNTS: NICE - AUTUMN JUDICIAL REVIEW.

Dear All,

The 17 July 2008 UK High Court decision on the NICE ME/CFS Guideline
Judicial Review is a major breakthrough. From the very bottom of my heart:
thank you to all who worked quietly and diligently behind the scenes, gave
of their time, energy, money and support and thank you very much to those
who enabled me to be there. We have a long way to go and a lot to do in a
short time before we have a shot at achieving success but: hope is now
restored. Whilst outcomes are of course not guaranteed, for the first time
in the UK, even though it is on narrow points of procedural law and not on
wider medical science issues, we at long last have the prospect of a fair
hearing before an institution with real power to act in our favour.

Now the really important bit for the hearing itself... the first thing both
counsel and our solicitor said yesterday was they felt the fact that the
court had been full of patients had a significant impact upon the outcome.
Justice Cranston clearly expressed compassion towards ME patients generally
as well as the litigants in particular. Again, this morning, I have been
contacted by our solicitor to say that patient support prior to the hearing
and in the public gallery was crucial. I believe therefore that it is
absolutely imperative our solicitors now try to secure a courtroom with a
large public gallery and we/you all work to absolutely pack it with
well-behaved (that part is very important) and informed patients and carers
for both days of the autumn hearing. If patients cannot attend then send a
relative or friend in your place. Even if so many people attend that some
have to wait outside in the hall this will send an absolutely invaluable
message to the Judiciary, press and beyond.
We simply have to let the
establishment know that we will not go away and we will not stop struggling
until we get proper science, proper medicine, proper care and nothing short
of justice.

PLEASE can folk start organising to attend the hearings now? Spread the word
as widely as possible within the ME community and friends and family. It is
impossible for me to be involved much in this aspect of things myself as I
have to focus on matters legal. Why not consider organising discounted
block-booked overnight accommodation at a nearby travel-lodge or student
residences: perhaps with a coach or two to ferry folk from accommodation to
the court on both days? This is highly doable and would be self-financing by
the individuals. The importance of this hearing cannot be overemphasised.
Please therefore; someone or some team of individuals please get organising!
I know it is a lot to ask but we have got to garb this opportunity one
hundred per cent.

We will let you know dates, times and room number as soon as we know them. I
am afraid that the Royal Courts of Justice building is not particularly
disabled-friendly but I managed to get around in a wheel chair and we should
not be put off. Please, please, please DO go to the hearings if you can and
if you cannot please send someone in your stead. Information regarding court
location, access and services can be found at the web address below.

Many thanks and very best wishes to you,

Kev Short.

http://www.hmcourts-service.gov.uk/cms/list_admin.htm

[Permission to Repost].
- - -

NICE JUDICIAL REVIEW & MEDIA COVERAGE.

Dear All,

I have been advised not to give media interviews prior to
completion of the NICE Judicial Review hearing this autumn. Advice
that I am more than happy to take and all media enquiries on NICE/JR
etc should be directed to our solicitor, Jamie Beagent, at Leigh Day
& Co (see below). I would be most grateful therefore if any of you
are contacted by the media for my personal contact details that you
do not give them out and instead direct the media to the solicitors.
I have been repeatedly contacted by the local BBC. I have also had a
local newspaper reporter knocking on my and my neighbours' doors last
night and wish to avoid this as I have a lot to do and am struggling.

jbeagent@leighday.co.uk
Leigh Day & Co, Priory House, 25 St John's Lane, London,EC1M 4LB.
Tel: 020 7650 1248/020 7650 1240 / Fax: 020 7253 4433 /DX 53326
Clerkenwell
http://www.leighday.co.uk/

Many thanks and best wishes,

Kev Short

- - -

A summary of proceedings that took place in the High Court on Tuesday 17 June 2008 is available in the news section of the ME Association website:

http://www.meassociation.org.uk/content/view/590/70

The news section also contains press items covering this important legal case.

- - -

Jamie Beagent (our solicitor) and (separately) Ian Gibson MP et al were interviewed on: BBC Radio Norfolk:
'Breakfast with Stephen Bumfry'.  Programme: 7am to 10am, Thursday 19 June 2008.

Unfortunately this radio item on ME/NICE JR is not in one block but is scattered throughout the programme.

The main piece is at:
0:20:34-0:29:26 (approx) (Kev Short and Doug Fraser's solicitor, Dr Ian
Gibson MP and a producer (?)
on the program whose nephew has it - E-mail from him read out).

https://download.yousendit.com/75E3CC9025578384

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