«
»

Top

Working life and chronic illness: the experiences and solutions of Carenity members

Published 6 Jun 2019 • Updated 7 Jun 2019 • By Louise Bollecker

Is it possible to continue working when you have a chronic illness? Through our major international survey, we wanted to understand the patients' daily professional lives, their difficulties and their solutions.

Working life and chronic illness: the experiences and solutions of Carenity members

Survey conducted in May 2019 among 1,753 Carenity members in France, the United Kingdom, Italy, Spain and the United States. For more relevance, we present here the results given by Carenity members in the United Kingdom.

Chronic illness has a strong impact on professional life

We wanted to understand if having a chronic disease had an influence on your career path. For the Carenity members who responded to the survey, the finding is clear: on a scale of 1 to 10, they rate the impact of the disease on their working lives at 7.4.

impact of disease on professional life

Working life is mainly disrupted by fatigue (impact of 8/10) resulting from the disease. This podium is completed by chronic pain (7/10) and attention and concentration disorders (6.7/10).

impact of disease on career path

>> Chronic fatigue: read patients' experiences and solutions

On the other hand, medical care (frequency of medical appointments, how treatments are administered) does not seem to be the aspect that affects working life the most. However, a score of 6.2/10 was given to the impact of side effects of treatments on work.

A majority of patients have already taken leave because of their illness

Faced with fatigue and other symptoms of their illness, patients may no longer be able to work as usual. 65% of respondents took time off work because of their illness in the past 12 months. In 35% of the cases, it was sick leave. In total, over the past year, respondents were absent from their positions for 70.7 days. Craftsmen, traders, company managers and executives and higher intellectual professions were more numerous not to take time off.

The distribution of leave taken because of illness:

time off work because of illness

Nearly half respondents received work accommodations

For 52% of our respondents, no adjustments have been made to limit the impact of the disease on their working lives. For the 48% who were able to benefit from adjustments, it was mainly a reduction in working time that was proposed (41%), followed by an adaptation of the missions (22%) and teleworking (21%). A change of work was proposed to only 14% of patients. 

>> Working life: what rights for reintegration do patients have?

Compared to other countries where the survey was conducted, the United Kingdom is the country where members have benefited most from work accommodations.

“Always be honest with your employer and people you work with as education is the best solution.  People don’t know what you need unless you tell them.”

Accommodations for patients:

work accomodations

The Equality Act 2010 states that an employer has to make ‘reasonable adjustments’ to avoid you being put at a disadvantage compared to non-disabled people in the workplace. For example, adjusting your working hours or providing you with a special piece of equipment to help you do the job.

“What I need? Not sitting on broken chairs. Being allowed to take regular breaks. Having somewhere to lie down and not to be judged for needing to do this. Access to ice packs. Transport available to get me to the workplace rather than public transport. Education for colleagues and managers to stop them from judging”

Patients lack knowledge about available financial support

80% of the Carenity members who responded to the survey do not receive any financial support related to their professional life. While 43% are not eligible and 7% have not taken any action, 38% do not know of any financial assistance from which they could benefit.

>> How do I know if I’m eligible? Check the benefits calculators here

If you’re ill or disabled, Employment and Support Allowance (ESA) offers you financial support if you’re unable to work or personalised help so that you can work if you’re able to. Unemployed, self-employed and employed people can apply.

Discrimination related to illness in the workplace

52% of respondents to this survey spoke openly about their illness to all the people they interact with in the workplace. "Only" 13% of the people knowing about the disease were unpleasant.

“I don’t believe any solutions will be made in the near future to accommodate mental health illnesses. There’s still a lot of lip service out there with no real practical way of implementing it. It remains a stigma in the work place, unfortunately.”

Nevertheless, 50% of patients felt discriminated against. 35% of them blame their employer.  It’s against the law for employers to discriminate against you because of a disability. Remember that the Equality Act 2010 protects you and covers areas including: application forms, interview arrangements, aptitude or proficiency tests, job offers, terms of employment, including pay, promotion, transfer and training opportunities, dismissal or redundancy and discipline and grievances.

discriminations against patients

Carenity members' solutions to better integrate patients into the labour market

We submitted several solutions to the patients who responded to the survey. Many were approved, but three were preferred by our members:

- Carry out actions in companies to raise awareness of chronic diseases.
- Adapt the working environment by creating spaces for resting and/or isolating oneself (e. g. to take one's treatment)
- The State should financially help patients to be better equipped, hence adapting more easily to the work life (transport to the workplace, adapted chairs/offices...)

78% of patients also saw fit to promote the professional transition of patients with chronic diseases to a more appropriate profession.  

On the other hand, only 46% of our members are in favour of the obligation of companies to employ people with chronic diseases. 16% of patients are against it and 38% have remained undecided about this measure.

“Unfortunately my director said I was not up to standard and sacked me. Saying my concentration levels are not very good.”

Thanks to respondents Thanks to all the members who participated in this study!

Thank you to all Carenity members who shared their experience to advance the integration of chronically ill people into the labour market. Below you can read more of their opinions and solutions regarding patients' professional lives.

“To have more information about the illnesses available so more people getting a better understanding of what there colleges have to endure whilst still trying to carry out their daily work activities”

Financial help to allow people to work part time would be good. Understanding that not all disabilities are visible and that just because we force ourselves to go to work and smile, doesn’t mean we don’t go straight to bed when we get home.”

“I actually worked at a doctor's and they threatened me with disciplinary actions so I had to leave as I couldn't cope and that was 10 years ago.  If the medical profession doesn't care or understand how can anyone else?”

“I think enough is already being done. It is up to the individual whether to continue in the professional environment they are in after their diagnosis & condition has stopped them from doing that career position.”

“There are very few jobs that will take on anyone with a chronic illness or disabilities as there are many other people without after the same job. Provide more incentives to employ chronically disabled people.”

Survey conducted in May 2019 among 1,753 Carenity members in France, the United Kingdom, Italy, Spain and the United States. For more relevance, we present here the results given by Carenity members in the United Kingdom.

1

avatar Louise Bollecker

Author: Louise Bollecker, Community Manager France

Community Manager of Carenity in France, Louise is also editor-in-chief of the Health Magazine to provide articles, videos and testimonials that focus on patients' experiences and making their voices heard. With a... >> Learn more

9 comments


avatar
Unregistered member
on 18/06/2019

My disabilities prevented me from working since 2001, when an accident at work was the FINAL straw. I had RSI following a whole day of fabricating and welding very small brackets used in the bed frame making sector, basically two days work in one. Since then I have had THREE Heart attacks, and suffer from Ankilosing spondilitis, Osteoarthritis, Hypertension, Diabetes Type II, Obstructive Sleep , Micro vascular angina, MINIMUM 40 TABLETS A DAY  and 6 INJECTIONS per day then I have to go for tests for this and tests for that, hospital for this and hospital for that. I have so many appointments with different bodies, that NO employer will give me a job. I sometimes get a phone call and I hear that an appointment has been cancelled and could I possibly get to hospital, some 23 miles away within 90 minutes? Yes. I always grab such appointments because you can be on waiting lists for so long. Maybe it's my GP who says that a blood test result has come back with a worrying note from the lab saying that my kidney is 'leaking' protein, so off to the GP I trek. Some weeks I may have one or two appointments in different hospital's and a doctors appointment Oh! and a trip to the dentist, then there is the Podiatrist on Thursday morning 8-30 am the list goes on and on, I cant remember the last time I had a week without one or two appointment's somewhere.

I WOULD LOVE A JOB.  Maybe one day??

Just keep thinking POSITIVE.......... 

Richard ( the human pin cushion )..... lol..... lol 


robjmckinney • Ambassador
on 19/11/2019

Before my decent into more serious health issues I had herniated discs dominate my working career leading to eventually ending working for me. Instead of looking for solutions, changing careers I worked to the destruction of my discs. Eventually more serious conditions dominated my health ending any chance of a return to work. Though today there seems greater support for disabled conditions in the past there was virtually none. Plus a secret society in understanding your medical condition, alternatives and support within the benefit system. 


nickyg
on 19/11/2019

I have ankylosing spondylitis rheumatoid arthritis fibromyalgia and chronic fatigue.i worked in a charitable organisation working in care good money actually had some life and despite being a long way I enjoyed my job lacked some opportunities which could have benifited the organisation but didn't want that that's their choice how ever I have had these conditions now for 13 years in december.i had time off for my illnesses yes my rota got changed about the only support I got in reality.i wanted to stay full time.everyone on the ward knew of my conditions and thankfully was helpful and showed it. My managers was always informed before job started they knew all conditions and was given updates required by me by law. No problem with that I arranged as many appointments around my rota as possible as had plenty notice the odd at short notice but again managers fully informed but did my best to keep appointments to days off which was better then previously. The problem I have with them was managers then didn't support me with this information but used it against me to sack me for my disabilities hence why now I am taking them to court as they have caused more damage then good which they were explained to beforehand including under medical advice so no employment with a disability is hundreds time worser off and people don't want to know you and despite laws in place to protect us I will find out now wheither the law is going to protect me or screw me up further and cost me my future.i have fought these conditions for so long now my body's wrecked but my mind is still capable and I do want to work and yet I face more discrimination now then ever and makes me sick when I see company's get awards saying they are good on disability ethnicity and equality which has happened with this company etc but kick out the ones who are in that group as afraid their reputation falls and believes best for them really?.


lesmal • Ambassador
on 24/11/2019

My epilepsy commenced at the age of 16. I then spent a year at Polytechnic completing a secretarial diploma... From there I started working with a great company who I spent 9 years with... They understood my epilepsy, helped me go through the bad days and gave me time off for doctors' and hospital appointments when required. Due to relocating I left them but then wasn't allowed to work or study in another country until I had proper residency which took 3 years to obtain! 

Since then I started on social media to advocate, educate and give support on epilepsy. I now do volutary work both on social media and for a health wellness centre, which I love. 

I also do voluntary editing which keeps me out of mischief! 

You will also like

Assisted Dying: What Patients and Their Families Really Want

Assisted Dying: What Patients and Their Families Really Want

Read the article
Working life: what rights for reintegration do patients have?

Working life: what rights for reintegration do patients have?

Read the article
Are you a carer? Know your rights

Are you a carer? Know your rights

Read the article
How to make a complaint to the NHS

How to make a complaint to the NHS

Read the article

Most commented discussions