According to my calculations . . .

Moderators: perseus, *Lisa*, FluppyPuffy

According to my calculations . . .

Postby MCT » Sun Mar 01, 2009 4:53 pm

According to my calculations, if the population of the UK is 60,943,912 (as at July 2008) and of that 3% of the population have FM then there are approx 1,828,320 of us. That's more than the populations of the cities of Edinburgh, Cardiff, Belfast and Leeds combined. If 0.333% of the population have CFS/ME you can add Aberdeen to the list as well.

My question is, why is it that there are not more dedicated FM centres round the UK? From what I can gather the only ones are in London and Bristol as run by Professor Davies - not very convenient for those living in the Scotland, Wales, the north of England, and Ireland. If anyone knows of other NHS or private centres round the country please let me know.

I am considering an online petition to Downing Street about provision of specialist FM clinics or centres - there is a CFS/ME nurse practitioner in Scotland but as far as I am aware their remit doesn't cover FM. In order to get a reply from HMG I believe you need a minimum of 200 signatures.

Any comments regarding wording of a petition most welcome.
http://petitions.number10.gov.uk/FMClinics/

My get up and go just got up and went!!!

As you slide down the bannister of life, may all the splinters be facing in the right direction :)
User avatar
MCT
UKFM Member
 
Posts: 463
Joined: Fri Sep 19, 2008 10:19 pm
Location: Scotland

Postby Corinne » Sun Mar 01, 2009 5:38 pm

I think that what you have written here is pretty good- the first & second paragraph cover it all- then add that you would like to see this matter addressed & more specialised help to be available in the north of england & scotland.

Corinne x
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
Corinne
UKFM Member
 
Posts: 378
Joined: Fri Sep 26, 2008 10:38 pm
Location: Brighton, Sussex

Postby auroura » Sun Mar 01, 2009 5:40 pm

Wow when you see the statistics written down its quite amazing. I think a petition is a fantastic idea. I for one would sign it like a shot.
Sharon

Bad is never good until worse happens
auroura
UKFM Member
 
Posts: 295
Joined: Thu Feb 12, 2009 12:20 pm

Postby Kayzee » Sun Mar 01, 2009 6:36 pm

I'd support what you've written MCT and would sign up.
User avatar
Kayzee
UKFM Member
 
Posts: 95
Joined: Mon Dec 08, 2008 2:55 pm
Location: Scotland

Postby Ivyleaf » Sun Mar 01, 2009 7:05 pm

Ditto - anyone got a pen ???
Ivyleaf
 

Postby motherelephant » Sun Mar 01, 2009 7:39 pm

I heard recently that aspecialist hospital is to be built in sheffield the land has been aquired but i havnt been able to find out anymore. motherelle
Like sunshine in the morning, may this brighten up your day and show you that you're thought of in a warm and loving way.
motherelephant
UKFM Regular
 
Posts: 1045
Joined: Sat Feb 07, 2009 9:59 pm
Location: sheffield

Postby princess » Sun Mar 01, 2009 7:41 pm

yes i would sign - as far as i know there is nothing up here in Scotland.
User avatar
princess
UKFM Regular
 
Posts: 4769
Joined: Thu Apr 10, 2008 8:27 pm
Location: scotland

Postby samantha louise » Sun Mar 01, 2009 8:47 pm

really motherelle, thats interesting
samantha - louise
and my two little wiggles!
xxx

fuddle off... no,... YOU fuddle off!!
samantha louise
UKFM Regular
 
Posts: 1003
Joined: Fri Feb 06, 2009 3:41 pm
Location: yorkshire

Postby princess » Sun Mar 01, 2009 9:07 pm

MTC - very interesting!!!
User avatar
princess
UKFM Regular
 
Posts: 4769
Joined: Thu Apr 10, 2008 8:27 pm
Location: scotland

Postby MCT » Sun Mar 01, 2009 9:18 pm

Here is wording I'm planning to use for the petition:

Petition for the Provision of dedicated Regional Fibromyalgia Clinics or Centres within the UK

It is widely accepted that approximately 3% of the UK population has the extremely debilitating condition Fibromyalgia which affects every aspect of their lives. It is an “invisible illness” where sufferers may look well but suffer from chronic fatigue, cognitive problems, mobility problems, widespread pain and extreme sensitivity where even the slightest touch is very painful.

According to my calculations, if the population of the UK is 60,943,912 (as at July 2008) then there are approx 1,830,000 people with the illness - more than the populations of the cities of Edinburgh, Cardiff, Belfast and Leeds combined. Fibromyalgia is a complex condition and sufferers have great difficulty in obtaining treatment due to a general lack of understanding of the condition.

There is only one dedicated NHS Fibromyalgia Clinic, which is run by Professor John E Davies at Guy’s Hospital in London. One NHS clinic for over 1.8 million people is totally inadequate and a clinic in London is not easily accessible for those suffering from this debilitating condition living in Scotland, Wales, the north of England and Northern Ireland.

The undersigned would like the NHS to set up dedicated Fibromyalgia Clinics or Centres in Scotland, Wales, Northern Ireland and the North of England.


Any suggestions for additions or omissions?
http://petitions.number10.gov.uk/FMClinics/

My get up and go just got up and went!!!

As you slide down the bannister of life, may all the splinters be facing in the right direction :)
User avatar
MCT
UKFM Member
 
Posts: 463
Joined: Fri Sep 19, 2008 10:19 pm
Location: Scotland

Postby princess » Sun Mar 01, 2009 9:26 pm

I have ME/Fibro - could you add ME/Fibro - or is that a daft suggestion?
fiona
User avatar
princess
UKFM Regular
 
Posts: 4769
Joined: Thu Apr 10, 2008 8:27 pm
Location: scotland

Postby LinzWorld » Sun Mar 01, 2009 9:30 pm

There are other clinics. The clinics you refer to are private clinics.

There is an NHS FM clinic in the Rheumatology department at Guys Hospital, also run by Prof Davies. There is a FM clinic at Poole Hospital run by Dr Richards. There is an FM clinic and management course in Bolton and I know there are other lifestyle courses available - one in Sussex.

There may also be other clinics. Part of the issue is that they vary, but that's true of clinics for any illness.
Last edited by LinzWorld on Sun Mar 01, 2009 9:33 pm, edited 1 time in total.
LinzWorld
UKFM Regular
 
Posts: 1821
Joined: Sun Jan 13, 2008 4:07 pm
Location: Berkshire, England

Postby LinzWorld » Sun Mar 01, 2009 9:32 pm

Plus you would also want to say that prevalence is 2-5% as 2% is agreed on most often.

ME/CFS and Fibro are separate conditions and - quite frankly - we don;t want to give any encouragement to the NHS to put them together as some health authorities have tried to do this in the past and have taken it a step further and said that therefore there are no recommended medications for Fibro as there are none for ME/CFS.
LinzWorld
UKFM Regular
 
Posts: 1821
Joined: Sun Jan 13, 2008 4:07 pm
Location: Berkshire, England

Postby MCT » Sun Mar 01, 2009 10:01 pm

Linz

Is that 2.5% or 2% to 5%?

There is a FM clinic at Poole Hospital run by Dr Richards. There is an FM clinic and management course in Bolton and I know there are other lifestyle courses available - one in Sussex.


Are these all NHS run and easily accessible to anyone who needs them, I thought the only NHS clinic was at Guy's?
http://petitions.number10.gov.uk/FMClinics/

My get up and go just got up and went!!!

As you slide down the bannister of life, may all the splinters be facing in the right direction :)
User avatar
MCT
UKFM Member
 
Posts: 463
Joined: Fri Sep 19, 2008 10:19 pm
Location: Scotland

Postby LinzWorld » Sun Mar 01, 2009 10:20 pm

Yup, all NHS.
LinzWorld
UKFM Regular
 
Posts: 1821
Joined: Sun Jan 13, 2008 4:07 pm
Location: Berkshire, England

Next

Return to Politics & Lobbying

Who is online

Users browsing this forum: No registered users and 1 guest