#MillionsMissing & Northern Ireland

Today is 25th May and the day of the global #MillionsMissing campaign, where empty shoes are being used to represent active lives lost to ME.

These are my shoes, but they don't get the wear they deserve.  

Since March 2012 I have been unable to work, and incapable of walking normal distances.  The soles of these shoes remain without the scuffs from the paths that I might have trod since the day that I got ME. 

Of course I found other paths in life - not ones to "walk", but rather ones I've been pursuing in a more sedate manner.  This blog is one such new path.  

My activity with the charity Hope 4 ME & Fibro Northern Ireland is another.

In fact Hope 4 ME & Fibro NI are supporting #MillionsMissing campaign with an empty shoe demonstration at our up and coming conference - "Chasing Competent Care" on Monday 6th June. You may recognise the shoes in this flyer for the event!

We hope to get  a big attendance from patients, carers, medical professionals and other interested individuals.  There has been a lot of interest to date. (Click on the images below for more detail)

Care for the estimated 7,000 ME patients and some 22,000 fibromyalgia patients in Northern Ireland is almost non-existent and, where it is provided it is largely inadequate.

To quote Joan McParland:

"If you're a patient in NI and completely satisfied with your quality of life and having no hope for a better future, then just ignore and eat more cupcakes!
: the lack of a dedicated NHS Consultant

: the lack of supporting specialist NHS services

: the lack of education within the medical community

: the lack of awareness within the general public

: the fact it's almost impossible to get an accurate diagnosis

: the fact you will most likely be sent to mental health clinics

: the fact you will be advised to exercise and little else.

: the fact HSCB have done nothing since 2009 other than

agree the situation is 'frustrating.'

: the fact HSCB are insisting future NHS services will offer 

only Condition Management Programmes claiming 'many'

patients will return to work after 12 'talking treatments!'

: the fact HSCB medical advisers have reversed the decision 

to give financial support for our medical professionals 

education training events unless we solely promote NICE 

Guidelines (includes GET/CBT and little else)

: the fact parents are being put under investigation if their

child does actually get a diagnosis of ME.

: the fact, many medical professionals are interested enough 

to actually request educational material from our patient 

charity.

: the fact none of the above will change by talking, moaning, 

groaning sessions, being frustrated, being angry or just

accepting the intolerable situation. 

And more....

OR if at all able, join us in the Stormont Hotel on 6th June

OR send a family member or friend.

OR request your name be added to a pair of empty shoes here.......

https://www.surveymonkey.co.uk/r/CKTTPB3

OR post, deliver your empty shoes to any 'Hope' trustee, addresses available on request by PM."

*

Our event is advertised on #MEaction.net here:
http://millionsmissing.meaction.net/locations/united-kingdom/belfast/

Also you can keep up to date with Hope 4 ME & Fibro NI activities on our announcements page here:
https://www.facebook.com/Hope4MEFibro/

Please also check out the #MillionsMissing tag on Twitter. 

Thank you for your interest.