Improving medical outcomes in lupus: enhancing the effectiveness of the medical interview and improving patient support

‘When I asked for help and support it was not there’: current NHS employment practice and its impact on people with systemic lupus erythematosus

“…The detrimental impact of unemployment, the need for active rehabilitation of those with post-COVID inflammatory fatigue and brain fog, and the possibilities for flexible furloughs from work have been part of the current national discussion and are particularly relevant to this cohort. Long COVID rehabilitation clinics have been established rapidly, whereas they do not exist for people with SLE or for many people with other long-term conditions or for those requiring rehabilitation after accidents or other surgical treatments [ 22 , 30 ], which is inequitable.…”

“…It is time to move on from documenting the negative impact of SLE on educational and employment opportunities for those who live with it, to find solutions that will benefit not only individuals and their families but also health services and wider society and, it is likely, others with FICCS [ 30–32 ]. The aspirations of successive NHS reports, published over many years, need to be implemented rather than endlessly publicized.…”

“…The punitive approach to managing those with debilitating long-term conditions needs to be eradicated by better training of and support for managers and the use of excellent, specialist OHS and vocational rehabilitation services. The NHS needs to support rehabilitation for people with all sorts of illnesses and accidents in the same way that it has rapidly provided rehabilitation for those with long COVID [ 22 , 30 ]. This study suggests that the if NHS continues to use its current workforce practices, it will not retain those of its staff with persisting symptoms from long COVID, which has many similarities with SLE in its reported impact on functioning.…”

“…The participants stressed the need for greater awareness of lupus and its impact on employment. This could be included in position statements of academic lupus organizations and charities [ 30 ], and the medical faculties of vocational rehabilitation and occupational health need to highlight, for example, counter-productive employment practices, such as the Bradford factor and the ill-health retirement regulations [ 19 , 25 ]. High-quality research is needed to test early employment support [ 20 , 27 , 31 , 32 ] that will overcome the current barriers that people with SLE and other FICCS face in trying to live as healthy, productive and normal lives as possible, which will benefit not only themselves but also the NHS and wider society.…”