I'd be really interested in comments on this editorial -written to accompany Melanie Sloan's et al, comments on communication

[Milliecox]

There is some lovely artwork to show importance of communication and some ideas on improving lupus care in general

academic.oup.com/rheumap/ar...

[whisperit]

Thanks Milliecox,

The main thought is to welcome the fact that our collective work (the authors and the LUK forum members, I mean) has clearly impressed the editors of the journal enough to warrant an editorial. Well done us!

Overall, the tone seems really supportive too. And the clear call for clinicians to act on it is especially welcome.

The caveat about the use of the term "medical PTSD" is worth thinking about, but again, the fact its been highlighted seems a step forward. Whether or not it might be used in line with DSM diagnostic criteria seems less important than acknowledging that our experiences with medical professionals are in themselves potentially pathogenic.

x

[Milliecox in reply to whisperit]

Thank you for your ideas - the comments that clinicians make can be very damaging and only yesterday this was reinforced by the news from Shrewsbury - where something has gone wrong or is not going right and the patient/family get the blame or do not get the support they need. This will not change without training. I continue to be surprised at the low level of attention given to specialist symptom control and rehabilitation, and the lack of help to reduce the socio-economic impact of this life long illness.

[whisperit]

Oh, and i love the graphic! Humanity emerging in a peer reviewed professional journal at last! x

[Milliecox in reply to whisperit]

Yes the graphics are wonderful and unusual - the artist is amazing..

[Insomniacette]

I love everything about this editorial!!! 😍

[Milliecox in reply to Insomniacette]

Glad to hear it - do hope some of the wider approaches can be implemented for people for living with lupus, as happens in some other illnesses. We are so short of psychosocial and socio-economic support.

[MelanieSloan]

Thanks Milliecox, great article and hopefully will improve awareness and support.

We are planning a trial that looks at providing a support package for people with lupus/other rheumatic diseases with courses on managing the medical relationship, diet, exercise (pacing especially), acceptance, pain management, physio, employment etc - and just that general support and nurturing in coming to terms with - and managing for the rest of our lives - a chronic disease.

If anyone has any thoughts on what to include in this type of 'nurturing' package (probably a different one for the newly diagnosed and the more experienced patient) please let me know as we need to apply for funding for the courses and views from all of us will help make it more tailored to as many people as possible.

My email is [e-mail] or can reply and chat on here as good to brainstorm ideas with the people who matter most in coming up with what would work best.

[Milliecox in reply to MelanieSloan]

Great to see this .. been unable to reply until now. have been contacted by several since editorial. Frustrating that symptom control and rehab gets suck low priority plus employment difficulties since endless research over many years demonstrating financial and social penalties of Lupus particularly in those diagnosed when teenage/before establishment of career.Cann write more by email ..have done significant work in another hard to treat symptom (shortness of breath) and used MRC evaluation of complex interventions methodology..which may seem long winded but gives firm foundation. with employment support there are lot of suggestions but no formal evaluation..

Will wrap up soon but suggest co-design of all interventions to suit individual needs and styles as well as physios lots of vocational rehab and fatigue management is done by occupational therapists. Also can suggest new group working on complex illnesses and employment

Would be good to hear what employment interventions have helped people on forum?