Following representations to the Patient and Client Council (PCC) by patients and carers, the PCC agreed to facilitate a small working group of patients, carers and professionals to further understand the experience of people who are living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Northern Ireland. The aim of the project was to provide a mechanism for ME patients to be involved in decisions about future health care support for them.
The outcome has been a greater awareness of the health care needs of patients and agreement to the appointment of a part time medical lead for NI. Patients have been involved in the co-design of the job description and job specification for this post.
At what level did the PPI take place?
PPI helped the project to:
- Inform commissioning;
- Improve efficiency of a service;
- Improve quality.
The PCC, along with patients and carers established a small working group to ensure effective engagement with professionals at all levels of decision making. This lead to a regional symposium entitled “invisibleME”, which was attended by the Minister for Health, healthcare professionals, support groups, Health and Social Care Board (HSCB) members and MLAs, as well as patients and carers.
The symposium provided a unique opportunity to highlight the lived experience of patients and their carers, to also showcase good practice from other parts of the UK and to seek consensus to a framework for the way forward locally. In addition to the symposium, the working group has maintained partnership working with decision makers to try to make a difference for the thousands of ME/CFS patients here.
It has been agreed that the most pressing need is for a medical lead to ensure that patients have a correct diagnosis, to provide support for GPs in primary care and to lead in the development of services.
- Electronic engagement;
- One to one interview;
- Public meetings, roadshows and seminars;
- Focus group;
- Formalised involvement on strategic groups;
- Task and finish/project group;
- Participatory strategic planning.
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.
The PCC first became aware of Myalgic Encephalomyelitis in 2013 following a fibromyalgia/ME focus group as part of the Peoples’ Priorities report process. Following that, patients made an impassioned presentation at one of the PCC board meetings. Since then, people have been sharing with us their lived experiences, including cases of misdiagnosis that meant other conditions, such as cancer, went undiagnosed. Others described how their experience of exercise-based programmes aggravated their symptoms and they felt this had set them back in their recovery.
The most important need identified by the patients was for the restoration of a secondary care medical consultant to enable patients to get a reliable diagnosis, as well as to support GPs with the treatment and care of patients. The involvement project has provided an interface between patients, medical professionals, support groups and decision makers in the HSBC.
Service users and carers came to the PCC feeling concerned that their voice had not been listened to. Unlike other patient groups, they had a history of very actively engaging with decision makers. However, because of misunderstandings and a lack of clear clinical guidance, this engagement had been totally ineffective and without any outcome. This meant that all parties were very frustrated with years of ineffective engagement. The PCC closely with individuals and subsequently established a reference group with a view to working in true collaboration to effectively support them to have their voice heard and acted upon within the health and social care system.
This also meant that there was a need to be realistic about expectations and the limitations of what the working group could achieve. This has been supported by true partnership working with medical professionals from the Public Health Agency.
Outcomes due to involvement
The working group has secured agreement that the HSCB would develop a proposal to re-establish a secondary care medical consultant post. The job description and specification for this post has been co-produced with service users. The group is continuing to collaborate on behalf of and for people with ME/CFS to improve the existing services.
The main priorities for service users are that:
- Patients are given a proper diagnosis using a standard clinical method that will establish a proper baseline for treatment/cure;
- There is a specialist centre in Northern Ireland for the diagnosis and treatment of people with ME/CFS. the first step in this process is the reinstatement of a secondary care medical consultant to enable proper, timely diagnosis and to support them to get the services they deserve.
It is the role of the PCC to give a voice to people who may not be heard, or as in the case of ME/CFS patients, who have not been heard and not listened to, to help support them to get the services they deserve.
Feedback/quotes from service users/carers involved
“They thought my ME was depression. I was asked, ‘Why not admit you have depression?’ They thought it was all in my head.”
“It took my doctor two years to realise I had it and it was not low iron or depression. I can’t get a job as I am only able to stay awake for four hours a day and when I am awake I’m tired and sore. I wish people would take this condition seriously as I have to live like this and I have no life now and am lucky my family is there for me as I have nothing else. There needs to be more support groups out there for us to deal with it together.”
For further information, contact:
Joanne McKissick (Patient and Client Council)
web: The Peoples’ Voice Report