More power to you: M.E. patients found to be the least empowered

How can we become more empowered, and what do health professionals need to know to enable this?

This is an article I wrote for Action for M.E.’s magazine for supporting members, InterAction.

A survey of 4,000 patients with long-term conditions found that those with M.E. were the least empowered compared to those with multiple sclerosis, Parkinson’s disease or mental health conditions. Empowerment was also lower in women and younger people.

Research has shown that if people are confident in managing their health and seeking the help needed from health and social care services, they have better health outcomes and in turn a better quality of life. With this in mind, the NHS Five Year Forward View, which sets out a vision for the future of the NHS, aims to encourage a culture change from healthcare being something that is done to us, to something that is done with us.

The empowerment study, published in the journal The Patient – Patient-Centered Outcomes Research , aimed to find out what factors affect how empowered people with long-term conditions feel, and to identify gaps where patients are not getting their needs met for various reasons, so that both patients and our healthcare providers can take steps to close these gaps. The study found that many factors come together to make someone empowered to manage their health with general themes of interaction with their health professionals, ability to assert their health needs and priorities, confidence and ability to navigate the health system, and knowledge of health condition and treatments, shown below.

Factors found to contribute to patient empowerment

Although the study set out to examine patient empowerment in general, people with M.E. in the survey scored the lowest for all of these factors involved in empowerment. This will come as no surprise as this correlates with the difficulties we know people with M.E. have in accessing healthcare, as highlighted in Action for M.E.’s 2014 Time to Deliver survey

Overcoming the barriers

It’s easy to see why people with M.E. are the least empowered, as there are many barriers we face along the way on our patient journey. M.E. itself is a very disempowering illness; it’s really difficult to be assertive when we’re unwell and to communicate our needs due to cognitive difficulties such as brain fog. The study’s authors suggest that being disbelieved and the stigma M.E. patients face is on a par with that experienced by people with HIV, hepatitis C and mental illness, and contributes further to being disempowered.

Both health professionals and people with M.E. need better information about the illness and ways to manage it. For this we need more biomedical research, and better awareness of M.E. within the NHS. All patients need to be treated with dignity, respect and as equal partners in managing our health. Even if we’re assertive and knowledgeable, being ignored and disbelieved is a huge barrier people with M.E. face in healthcare. It can be very frustrating and distressing not being trusted to know our own body and mind. Health professionals need to enable us to be more empowered.

We know there’s a reality gap between what NHS policies say and what we experience. That’s why empowerment is part of Action for M.E.’s strategy. This research adds extra clout to the charity’s calls for better support, information, and person-centred care for people with M.E.

What can we do ourselves to give us confidence in managing our health and getting the help we need?

  • Use Action for M.E.’s self-advocacy guide, Nothing about M.E. without me , and All about M.E.: symptoms and management booklets to find out your rights and tips for communicating with health professionals about what you need. Find other helpful resources by Action for M.E.
  • Sign up with your GP surgery to access your health records online so that you can see test results, referrals and letters from specialists. Find out more from the NHS on this here
  • Be a critical thinker in order to recognise scientifically sound and authentic information on the internet – healthwriter Cathy Stillman-Lowe wrote an article on navigating the health information minefield, and we will be publishing this on my blog soon.
  • Find some useful tips on responding to disbelief in this article by counsellor Joan Crawford in InterAction 90
  • If you have difficulty communicating verbally or remembering information because of your M.E. or any other illness, let health professionals know what your preferences are for overcoming these. They must now provide information in a way that helps you because of the NHS Accessible Information Standard. Read my blog on this

Comments are welcome. Check out my guidelines for comments and leave yours below.

One thought on “More power to you: M.E. patients found to be the least empowered

  1. If you try to be assertive Drs look at you like you’re mad. They are too quick to dismiss this type of illness as made up or all in your head. In my experience they are reluctant and unwilling to try to help as they simply don’t know what to do. They won’t try to let you guide them. You know your body best but they won’t listen. As a consequence I rarely see my gp.

    Liked by 1 person

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