I did some work with Liz Hunt and Liz Price (both from HULL university) - focused on NHS employees and their experiences of work in the NHS. It was sad (but not unexpected) to find out how little knowledge there was of people living with lupus and trying to work, and therefore how little support people received. Sadly many eventually stopped work, any work, altogether, and all faced working at a lower level than their skills and experiences warranted and had a cut in income. It was noticeable that some very young people felt their careers blighted from the start. I now have a grant to look a little further at NHS employment practice.
The paper is open access so you can download it without charge - it is a preprint when it is fully edited I will post it again.
Congrats Milliecox 👏👏👏👏👏 this is VERY IMPORTANT work you’re doing + getting published...On so many levels
Eg re this study: every time I read 🦓 NHS staff telling us here how poorly the health system supports them, my heart breaks & I think: so if it can treat its own this way...no wonder the health system is as predisposed to support civilian lupus patients as callously as our Camb Univ/LUK forum research is establishing it does.
We’re all in the same boat. am finding similar situations on my other 🦓 forums, eg U.K. Primary Immunodeficiency Disease & Gastroparesis + Intestinal Failure Forums...and now the NHS has got to function under the added pressure of Long COVID patients....
seems to me the system can never do better by us 🦓 ‘civilians’ if its own 🦓 staff get such poor support.
Thank you for your kind remarks and support for the work I feel although employment is linked to health it is not taken up by any research bodies - I know there are people who can work only minimally which is why promoting retirement and/or benefits plus work is important - even if someone can only work 2 hours a week and get paid for it (and we can see remote working is now very possible) it may potentially make a different to their health.
I think this work is applicable to many illnesses some common (e.g. MS) and some with only 1 or 2 sufferers and everything in between hence wanting to promote the characteristics FICCS - please do send round to any organisation or body or person including unions who seem deaf to these sorts of issues to help promote ideas
Hi Milliecox, this is very important work, well done. I have to say though that as a retired NHS worker with lupus I had great support from my colleagues, boss and the system. I wonder if it was because of the area I worked (strategic development) and therefore not directly 'hands on' with patients - have you been able to analyse it in this way or is this something you might include in future work? Good luck,Heather
Thank you It is very variable the support that people get - I was more hurt by ignorance than unhelpful ness - most people were very helpful but I did not realise there was such a dearth of information on how to improve things nor the implications of the pensions arrangements which are hopeless for people with FICCS.
I do think people in very physical jobs where you have to be there at fixed times (e.g. nurses) have a much harder time but it should still be possible to keep their skills in the workplace with some imagination and thought - academics tend to find it easier (though travel and long days are an issue but remote working will be more recognised in the future) ...I do note however that a reasonable proportion of the sample were in office jobs and one in HR who cautioned people about telling anyone - 'I know I'm in HR' sad.
I was working in a wonderful trust in the North East who I am sure would have supported me when I got ill and would have saved my career. Unfortunately I moved to the North West and had a totally different experience of nursing, bullying was rife. I shortly after became ill with multi auto immune illnesses and my caseload was increased amongst other decisions when it was already not humanly possible to maintain safety as it was x
Thanks Michelle - yes I am afraid the Trust's response can make the illness worse - thank you for relating this very sad story. I hope you are on the road to a decent modus vivendi now and as I said above I do think it is hard for nurses but there's need to be more effort to keep those skills in the workforce.
It never fails to astound me how the so called “ caring services” routinely fail to support their own. It was the same in Social Services if someone was sick, bereaved or not coping they were considered a liability often because of the sheer pressure of work and capacity of the workforce. What you are doing will make an impact on the experiences of our wonderful NHS staff. P,ease keep us updated and thank you xx
Thank youCecily - yes I do hope I can continue with this area of work as it is very much neglected and I share your astonishment that hospitals, the charitable sector and areas like social services are often the worst at supporting people - two work - related charities told me that the NHS and teaching were the worst at supporting their staff with illnesses. Thank you for your support and I think your analysis re workload is an important one - everyone is under so much pressure already that redistributing the work (often done crudely) will be unpopular (and there are other problems that people have) and staffing levels need to be adequate before people have holidays, study leave, and sick leave - all entirely predictable. Thanks again Sara
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