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12-Sep-2016

 

A Hidden Condition - patient stories

Today, the Patient and Client Council has published a compilation of fibromyalgia patient stories called ‘A Hidden Condition’, which highlights the experience of patients living with fibromyalgia.

Fibromyalgia is a long term condition that causes pain all over the body. It doesn’t reflect any specific identified problems with joints muscles, or bones and impacts on every aspect of a person’s life – physical and emotional. 

Speaking at a Fibromyalgia Knowledge Exchange Seminar, held in Belfast today, Louise Skelly said

“In our Health service, if we are to make a true difference for patients, then we need to listen to each other – its not patient vs professional.  We’re all equal, and bring different strengths and expertise, which helps solve problems.

“In Northern Ireland, there are few services available to people with fibromyalgia, and that’s something we’re trying to change.  Granted, there is no cure for condition, but there is evidence that treatment can ease some symptoms and improve quality of life.  

Louise summarised "For the past few years, we’ve been working with people with fibromyalgia, and medical professionals to try and bring about services in Northern Ireland. It’s a long road, and its not finished yet, but some progress is being made.”

The Patient and Client Council continues to help people have their voices heard on Health and Social Care services in Northern Ireland.

Read 'A Hidden Condition' online, or request a hard copy by emailing your name and postal address to info.pcc@hscni.net

 
 
 

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Previous comments ...

Jennifer 22-Sep-2016 at 17:10 hrs

Newly diagnosed with fibromyalgia would be interested in reading hard copy of a hidden condition thank you

 
 

Barbara Feasey 22-Sep-2016 at 04:44 hrs

Please may I have a hard copy too. Thank you.

 
 

L Stevenson 16-Sep-2016 at 12:04 hrs

I would really appreciate it if I could have a copy of A Hidden Condition.
Kind regaards,Linda.

 
 

Patient and Client Council 13-Sep-2016 at 15:41 hrs

Hi Karen and Annette
yes we'll get a hard copy to you both. We'll email you privately for more details.

 
 

Annette Graham 13-Sep-2016 at 13:47 hrs

Hi Patient and Client Council

May I have a hard copy of A Hidden Condition Many thanks.
Regards
Annette

 
 

Karen Evans 13-Sep-2016 at 10:19 hrs

Can I please have a hard copy? I have suffered from this awful disease for years x

 
 

Patient and Client Council 13-Sep-2016 at 09:53 hrs

Hi Kimberley, yes we'll get a hard copy to you. We'll email you privately for more details.

 
 

Kimberley McDonnell 13-Sep-2016 at 09:25 hrs

Hi may i get a hard copy please i would be most grateful. Thank you x

 
 

Patient and Client Council 13-Sep-2016 at 08:10 hrs

Hi Leanne and Susanne
yes we'll get a hard copy to you both. We'll email you privately for more details.

 
 

Leanne mccarron 13-Sep-2016 at 07:48 hrs

Can i have a copy of the book please? Thank you x

 
 

Susanne Weir 13-Sep-2016 at 00:29 hrs

Could I please have a hard copy? Thank you in advance of your help.

 
 

Patient and Client Council 12-Sep-2016 at 17:14 hrs

Hi Fiona, yes we'll get a hard copy to you. We'll email you privately for more details.

 
 

Fiona McColgan 12-Sep-2016 at 17:10 hrs

Could I get a copy please?