Home » Fibromyalgia: a hidden condition

Fibromyalgia: a hidden condition

This project aims to explain the impact that fibromyalgia has on people’s health, family life, work and hopes. In particular, their frustration with the time taken to get a diagnosis, the lack of understanding of the condition on the part of many healthcare professionals and society, and the lack of effective medication and support for self-management.

The key aim of the involvement is to identify how services could be improved within existing constraints and how people can be true partners in their care. The main outcome to date has been the development of a regional care pathway for fibromyalgia.

At what level di the PPI take place?

  • One to one;
  • Service delivery.

PPI helped the project to

  • Improve efficiency of a service;
  • Inform commissioning;
  • Increase ownership.

Background

This project was developed with the assistance of people living with fibromyalgia who wished to highlight issues relating to their condition. A steering group was established with a view to reporting and raising awareness of the condition. The aim of the project is to understand the experience of a small number of people living with fibromyalgia.

It also seeks to raise awareness of people’s experiences in relation to:

  • Getting a diagnosis;
  • Living with the condition;
  • Experience of Health and Social Care in Northern Ireland.

Through listening to people’s experiences, this project seeks to provide an understanding of what the challenges are for people living with fibromyalgia and highlight potential gaps in their health and social care services.

Aim of involvement

The PCC has a statutory duty to promote the involvement of patients, clients, carers and the public in the design, planning, commissioning and delivery of health and social care.

They key aim of this involvement project was to provide patients who suffer from fibromyalgia with the opportunity to share their experience and to be true partners in the development of solutions for service improvement.

Method(s) of Involvement

Challenges

  • Need to ensure appropriate research governance arrangements;
  • Size of project – a small qualitative study project;
  • Need to support patients throughout the project to go back to them to ensure their experience is accurately reflected.

Outcomes due to involvement

A report been developed outlining the experiences of service users and identifying key areas for change moving forward, including;

  • The recent scoping exercise by the Public Health Agency (PHA), which identified opportunities to provide more effective care for patients living with chronic pain, should be reviewed in light of the specific issues raised by people in this report. A needs assessment should be produced by Health and Social Care commissioners to understand how many people live with fibromyalgia and wha t services need to be developed for them.
  • A coordinated care pathway to support people living with the condition is currently being co-produced in partnership with patients, carers and professionals.

Feedback/quotes from service users/carers involved

“I don’t know if my story will help anybody but, hopefully, it will show that you can go from being a relatively normal person in society to living in your own wee world quite quickly.”

“I was taken into hospital with extreme pain down my side and around my diaphragm and neck and I collapsed a couple of times. They removed my gall bladder and I woke up in intensive care. When I woke I couldn’t move and that was the start of what I now know is chronic fibromyalgia.”

Further Information

For further information, contact:
Joanne McKissick (External Relations Manager, Patient and Client Council)
Email: Joanne.mckissick@hscni.net
Tel: 07881636320
Web: Fibromyalgia patient stories.