Professor Suzanne Verstappen et al – Written evidence (YDP0035)
Call for evidence: Launch The House of Lords Public Services Committee inquiry into the transition from education to employment in young disabled people
I am a Professor of Epidemiology at the Centre for Musculoskeletal Research, the University of Manchester. My main research interests are on the impact of rheumatic and musculoskeletal diseases (RMDs) on employment. In the last two years I have started several studies to gain a better understanding of the impact of juvenile onset RMDs on education, vocation and employment and on barriers and facilitators students at the University face in collaboration with internal and external researchers. Previous research and ongoing research addresses some of the questions included in this call for evidence.
Background
Entering and staying in paid employment may be challenging for young adult. Finding the right job, becoming financially independent, having (short-term) contracts and dealing with the mental/physical demands of the job are all factors young people entering the workplace face. For young adults with juvenile onset chronic conditions (e.g. rheumatic diseases, cystic fibrosis, asthma, inflammatory bowel disease) there may be further opportunities or barriers they face when looking for a job or when in paid employment. Not being able to work in a healthy and supportive working environment may have a negative impact on an individual’s disease and mental health.
At the University of Manchester (UoM, Prof SMM Verstappen) and the University of Dundee (Dr A. Farre) there is an interest in vocational readiness and gaining a better understanding about the barriers and facilitators young adults with juvenile onset rheumatic diseases (jRMDs) such as juvenile idiopathic arthritis, lupus and vasculitis face when entering the labour market and to stay in the labour market. jRMDs are auto-immune diseases in children with an onset of diseases before the age of 16 years. These are chronic conditions and inflammation may cause damage of joints and bones. Some of the jRMDs also involve other organs. The disease often fluctuates over time and patients frequently report fatigue and functional disability. Although treatment of jRMDs has improved in the last two decades, there is still no cure for jRMDs. Therefore, the majority of children/adolescents with jRMDs will continue to have problems when transitioning into adulthood. During this period adolescents/young adults will also start to make choices about their career and commence paid employment and thus this period is very important. This has also been highlighted in the NICE transition guidance where educational and vocational aspects are key components of an holistic care plan.
Despite the importance of understanding the impact of jRMD on career choices and employment, compared to some other adult onset rheumatic diseases, there is very limited research in this field. As part of a large international project, a systemic review was conducted (and currently updated for publication) to evaluate the impact of jRMDs on work compared to the general population or healthy controls to inform the EULAR Points to consider on work (Verstappen et al EULAR 2022; Boonen et al, 2023). Only a few studies were identified and results were slightly controversial. Some studies showing lower and some showing similar or higher employment rates. It is possible that some young adolescents leave education earlier because of their disease and seek employment. It might also be possible that some patients stay in education longer or it may take longer to find paid employment. Previous studies have shown that educational attainment is crucial to successful employability.
In a recently published systematic review (Farre et al, 2023) evaluating 43 studies, we found that vocational development is an important area to address, but very limited research has been done in jRMD (n=8 studies). The aim of this systematic review was “to identify and synthesise the experiences and benefits of addressing vocational issues in the provision of healthcare for young people (YP) with long-term conditions (LTCs)”. Overall, thematic synthesis of qualitative studies (n = 23) resulted in seven recommendations for intervention (psychological support; information/signposting; skills training; career advice; healthcare-school/workplace collaboration; social support; flexible/responsive care). The narrative synthesis summarised results of 17 interventions (n = 20 quantitative studies). Transitional care was the intervention type that most comprehensively met our proposed recommendations.
In another of our studies exploring pre-vocational and early employment needs of young people with long-term conditions from the perspective of occupational therapists, the majority of respondents (75%) perceived a need to address vocational issues for young people in their setting, although only 22% reported that there was a designated member of their multidisciplinary team who would address these issues (Pidgeon CHJ et al, BSR2022). Moreover, the right career advice received at school can have major implications for future job prospects/satisfaction. In the WorkMatters survey, conducted in collaboration with the National Rheumatoid Arthritis Society (NRAS), young people with jRMDs consider their condition when planning their career. Eight out of 14 respondents said that they changed their career path because of their disease. Reasons to change their career path included physical demands of jobs, to be able to manage their symptoms and to stay healthy. However, 8/14 respondents did mention that their condition was not considered when advice was provided by career advisers at school.
Questions:
General
1) What barriers do young disabled people face when leaving education and entering the job market and workplace?
There are several juvenile onset chronic diseases, including juvenile onset rheumatic diseases (jRMDs) such as juvenile onset idiopathic arthritis, lupus and vasculitis. The onset of jRMDs is before age 16 years, impacting both adolescents and young adults. Joints and bones of are often affected, resulting in functional disability. However, other organs may also be involved and people with jRMDs often report fatigue and pain. Due to the chronic and fluctuating nature of jRMDs, the disease may impact on education, vocation and employment. However, there is very limited research in this area. Furthermore, with a shift in the labour market where many young people work in a gig economy with short-term contracts (e.g. independent contractors, on-call workers), the uncertainty and high demands of these jobs may negatively impact on their health.
A large research project has recently been started at the University of Manchester (PI Prof SMM Verstappen, Co-I Prof KH Hyrich) in collaboration with researchers and (paediatric) rheumatologists at the University of Dundee (Dr A. Farre), Great North Children's Hospital (Dr Flora McErlane) and Liverpool University hospital NHS Foundation Trust (Dr Nicola Goodson). This research project is funded by the Nuffield Foundation in partnership with Versus Arthritis (Oliver Bird Fund). (Juvenile onset rheumatic diseases: education, vocational readiness, & employment - Nuffield Foundation).
The aims of this 2.5 years research project include:
1) To compare educational outcomes and career aspirations between adolescents and young adults with jRMD and controls.
2) To evaluate barriers and facilitators adolescents and young adults with jRMDs experience when making career choices and when entering the labour market.
3) To compare education rates and employment rates of adolescents and young adults with jRMDs with the general population.
4) To assess indirect costs and factors associated with worse work outcomes in adolescents and young adults with jRMD.
Support for young disabled people
3) How effectively do education systems provide career advice, guidance and support which meet the needs and career aspirations of young disabled people?
These questions will also be addressed in the abovementioned project. In addition, the University of Manchester will be conducting a survey (Autumn 2023) within the Faculty of Biology, Medicine and Health to gain a better understanding of opportunities and challenges disabled students face when participating in the higher education institution environment (PIs Prof SMM Verstappen and Dr H. Haroon). The survey contains further questions about accessibility, service use etc.
Public services as good practices
Decisions about whether to invest in Rheumatic and Musculoskeletal Diseases (RMD) related workplace interventions and/or adaptations may depend on the costs of the implementation and the possible benefits of some of these interventions/adaptations. However, little is known about what information organisations, including non-profit organisations, need to make these decisions. Furthermore, some organisations may not be aware of the occurrence of certain conditions such as RMDs in people of all ages. Often RMDs are seen as diseases of older people. The awareness is crucial when hiring young personnel and to retain young people with disabilities. The aim of an ongoing research project at the University of Manchester is to explore the motivations and evidential requirements for employers to invest in workplace health initiatives (Dr M. Eden (lead researcher), Dr J. Higgerson, Prof. K. Payne, Dr W. Whittaker , Prof SMM Verstappen (PI overall research project; work is undertaken as part of the Centre for Musculoskeletal Health and Work, funded by Versus Arthritis and the Medical Research Council). Semi-structured interviews have been conducted with large non-profit and profit organisations in the UK. Within each organisation the director, a line manager, and a representative with a workforce health remit were interviewed. Preliminary results of showed that all participants believed that investment in measures to promote employee health and well-being could positively contribute to their organisation’s efficiency. In contrast to organisations with mainly an older workforce, in one organisation with mainly a younger workforce, low RMD prevalence rates meant that these conditions did not specifically influence decision-making. It thus seems important to raise awareness of juvenile onset chronic diseases which are less well-known by employers and line managers.
21 September 2023
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