Resources for professionals for understanding living with long term conditions

In my talk Living With Pain on 7th February, I referred to several studies and other resources. Here are links to these and some additional ones on living with pain and hidden chronic illness, and improving our care.

If you were there on the day, thank you for listening, being so interested, and responding so compassionately to what I and many, many others go through. I spoke mostly about M.E./CFS and fibromyalgia but these experiences and the needs we have really apply to many other long term conditions.

I would be enormously grateful if you would share what I talked about with your colleagues and wider contacts, as this is one way of spreading much needed awareness and reaching the people we need to. All the links open in a new browser window.

Living With Pain slides with notes
The slides from my talk, along with my notes. Please bear in mind that I spoke a lot more around the content of the slides, so it’s not my full presentation. If you can think of other opportunities for speaking, any questions you’d like to ask, or ways I or Action for M.E. could support you to care for your patients, please contact me

Taxonomy of burden
The bigger picture of living with, and managing, a long term condition, how your professional role fits in, and ways you can minimise the burden through whole-person-centred care.

Stickman Communications: Common misunderstandings
Great leaflets and posters on communication skills and disability awareness, with fun and humour. The link goes to the pain communication leaflet but there are lots of others on specific conditions on the site, along with tools to help patients communicate their needs. Perhaps you could order a poster for displaying in your department or some leaflets to give to students and patients?

i news: Millions of people living in pain waiting for crucial treatment need urgent help, UK’s leading charities warn
We’ve all seen on the news the queues of ambulances and people waiting in corridors on trolleys because of the health and social care crisis, but this is just the visible tip of the iceberg as there are millions living out in the community not getting the health and social care they need. There are nearly one million waiting for diagnostic tests and scans, and over 3.7 million people waiting to start treatment, charities claim.

Functional ability scale
This was developed for young people and children but is equally applicable to adults living with chronic illness. It demonstrates the levels of ability/disability very well and is a useful aid for patients explaining what they can and can’t manage to do on a given day.

Unrest documentary film
This film by someone with M.E./CFS in the U.S. about living with a misunderstood illness and is winning lots of awards globally. It’s being shown in cinemas but is also available for screenings at universities, community centres, etc. The film is very moving and is raising so much awareness with the public, health professionals and politicians in the UK. It’s even been shown recently at the Scottish Parliament. It’s also available to view on Netflix, Amazon prime and iTunes.

M.E./CFS: a guide for pharmacy teams
A resource written with Action for M.E. raising awareness of this illness and ways to adapt your care to meet the needs of patients with M.E./CFS. Many of these ways also apply to other long term conditions or disabilities, so may be useful even if you aren’t aware of any of your patients having M.E./CFS.

Meeting the needs of people with M.E./CFS: essential facts and practical tips
A webinar I presented in November on behalf of Action for M.E., funded by NHS Scotland, which is now available to view online.

Health and social care professionals section of Action for M.E.’s website
Information for primary care and social care professionals on caring for people with M.E./CFS.

Support for patients living with M.E./CFS
You may feel you don’t have enough time in consultations to support patients as much as you’d like to. Signposting to condition-specific health charities could really help them. For example, Action for M.E.’s advice and support for patients and carers on management, social care, working, benefits and more. There is also a moderated support forum.

The Our Voices section of my blog
More about my story and guest blogs by other patients.

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