“Work is central to human existence and the motive force for all economies. For individuals, it provides structure and meaning and is good for people’s health and wellbeing, as well as their financial health and prosperity. Moreover, work benefits families and is socially inclusive.”
Professor Dame Carol Black wrote these words in her report to Tony Blair’s government Working for a healthier tomorrow in 2008 - a year after NRAS’ first national survey and report on the ‘impact on work of rheumatoid arthritis’ (RA). Ten years on, in late 2017, NRAS published its second report Work Matters following a major survey of more than 1,200 people with RA.
NRAS is the only patient-led organisation exclusively providing help and support to all those living with RA and Juvenile Idiopathic Arthritis (JIA) in the UK. In our 2017 survey, over 60% of the respondents were in paid work, slightly higher than the number reported in 2007. But our survey indicates that many with RA struggle to find the kind of job they want and need. It seems that finding a job with the right kind of support and a flexible approach by the employer is extremely difficult.
You can get RA at any age over the age of 16 and there are over 400,000 people living with this progressive, painful, autoimmune condition across the UK. Three-quarters of people with RA are diagnosed when of working age.
RA is often invisible, and it can be difficult for employers and colleagues to understand the variable nature of the disease. However, despite a high proportion of survey respondents disclosing their RA to their employer, many still find their employers are a long way from doing what is needed to help them work successfully, despite their RA.
Many people use their annual leave to attend hospital appointments and find themselves being passed over for promotion or other opportunities. Unsupportive employers can cause huge anxiety, depression and a dread of going to work.
Being diagnosed with an incurable, progressive disease such as RA, is challenging to come to terms with. You desperately want your life to carry on as normal, but you quickly realise that you are going to have to make adaptations. There may be some things that you will no longer be able to do in the same way. But with the right help and support, the impact of the disease can be minimised.
This is especially the case in the workplace. There are many simple and inexpensive things an employer can do to help someone with RA or other long-term condition. The obvious ones in an office-based environment are adjustments to computer, desk, chair, keyboard etc. Flexible working so that on bad days, the person can work from home can be enormously helpful. Flexible start and finish times can help with travel and dealing with early morning stiffness and fatigue. The government’s Access to Work scheme can also be very helpful in enabling use of taxis when necessary for example, rather than using public transport, but many employees and smaller employers are unaware of it.
We know that line managers in particular can make a massive difference to work accessibility by being supportive of and flexible with their employees. They can literally make or break the emotional wellbeing, self-confidence and self-esteem of their employees. It’s for this reason that we’d like to see widespread training being provided for line managers on how to support staff with long term conditions. A great example of an employer addressing such issues head on is set out in the John Lewis Partnership’s Working Well campaign.
With millions of people living and working longer with a single or multiple long-term condition such as RA, employers must be supported to find ways to better and more flexibly support these people to remain in the workplace, providing financially for themselves and their families, contributing to society, and ultimately reducing the disability employment gap. We cannot afford to ignore the enormous pool of talent that this group of people represents.
NRAS have launched a video with Ailsa Bosworth interviewing with Rain Newton-Smith, Chief Economist at the CBI, on how employers can better support for those with long-term health conditions. Watch it here.