Work realities with a chronic illness

I am writing this post as I was going through some problems at work and felt compelled to write about how to manage things when you work for an employer and have health concerns.

The Disability Discrimination Act (DDA) 2010 defines a person with disabilities as someone who has a physical or mental impairment that has a substantial and long-term adverse effect on the ability to carry out normal day-to-day activities.

This means that the DDA covers a vast array of physical and mental conditions and the UK government website goes further to explain what substantial and long-term are classified as:

• ‘substantial’ is more than minor or trivial, eg it takes much longer than it usually would to complete a daily task like getting dressed
• ‘long-term’ means 12 months or more, eg a breathing condition that develops as a result of a lung infection

So if your health condition falls into this category then you are legally defined as disabled. This results in being protected under law in terms of discrimination in the work place, alongside the other 8 characteristics which are protected under Equality Act of 2010.

In reality this means that your employer cannot discriminate when recruiting, interviewing, making job offers, promotions, training opportunities or in disciplinary and redundancy procedures. They also have to make “reasonable adjustments” to accommodate you in the workplace and make sure that you are not disadvantaged in any way compared to non disabled colleagues.

Now this is a huge grey area, as what on earth does “reasonable adjustments” actually mean?

As the gov.uk website states “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.” This all has to work around business needs and if they can do it.

Since I returned to work in November 2014 I had a special chair and assessment to support me sitting at my desk, I also had a foot rest a special mouse designed to reduce stress and pain in your hand whist using it, and rests for my wrist whilst using the keyboard. I was seeing an Occupational therapist at the time and she wrote to my work asking for me to work in an office with parking available outside the entrance, to be in a quiet environment, to have a break every hour among other things. I was doing a phased return to work at this time and they had welfare meetings with me every fortnight after I had seen my doctor and specialists to discuss my hours and how I was getting on.

I eventually asked to work from home, work from offices closer to home, change which office I am at depending on what I am doing after work to reduce driving times and to have a work station assessment to see if there is anything else that they can do with my desk to make it less painful for me. These were either denied or  were put in place, so some were seen by my employer as “reasonable adjustments”. Unfortunately this may not be the case for every employer, and as all of us have varying health issues and will not respond to things in the same way we will need different things adjusted to make work accessible for us. I am still involved with a grievance about some of the issues surrounding my treatment by my employer after my health condition became more severe and debilitating, so I know that this can be a very challenging and lengthy process!

Access to Work is a fantastic and little known service which provides amazing support to disabled people in work. When I returned to work I spoke to them about support with travelling to work as I was really struggling to drive and knew that I needed an automatic car, but couldn’t afford it at the time. I rang the helpline 0345 268 8489 and they were brilliant! I was allocated a caseworker and we discussed what I was struggling with and what support I required. We decided that getting Taxi’s to work on day’s when the pain in my arms and legs was at it’s worst was a sensible option and I was sent a form to complete and my employer had to sign it, I got quotes from a couple of taxi firms, contacted Access to Work and I was was all set up! I used it a few times and the refunds were quickly paid into my account. They will look into your needs for work and provide accessible access, telephone headsets, keyboards, adjustable desks and chairs, IT programmes or support workers to support visually impaired employees, the list goes on and on. If you need it to be in work, they will try and figure something out! If you are just starting with an employer then they will pay the full cost, (as long as you meet the eligibility criteria) and if you have been in work for a while then your employer will be asked to contribute, but this depends on a couple of factors, so just ask. This is a massively under utilised service as most people have never heard of it! You can apply if you have either mental or physical disabilities and also if you are self employed, so give them a call.

Another area of financial support that you can access is PIP, Personal Independance Payment which is the new version of Disability Living Allowance. This benefit is paid if you are in work or not depending on if you meet the criteria, so you do not need to be out of work to claim this and it will not affect your work or any other benefits that you are receiving.

My personal experience of this was a bit of a challenge, so I’ll start by telling you my Mum’s experience. She is a self employed hairdresser and did not have any idea that she might qualify for this benefit until I suggested that she apply. It took her a long time to get her head around claiming for anything and kept saying that she wasn’t that bad. She suffers from Rheumatoid Arthritis and Fybromyalgia which cause chronic pain and she struggles with day to day tasks. After eventually completing the forms (they are very long and time consuming) she sent them off, was invited to a medical pretty quickly, missed that one as she turned up on the wrong day, (don’t you just love brain fog!) got a new appointment again very quickly, had her assessment and was awarded the lower level of the daily living component, (there are 2 elements to the benefit, Daily Living and Mobility). Her award came through quickly and she purchased an automatic garage door as she had been struggling to close it so this was a massive help!

My experience was to complete the form in August 2014 with the help of a physio and occupational therapist, we thought we’d be able to answer the questions correctly and put forward the details of my condition, how wrong we were! In October 2014 I received a letter stating that my claim had been rejected, so I put in a reconsideration. I had sent through updates on my condition and medications as requested and stated that I hadn’t even been asked to attend a medical so was very unhappy with being rejected out of hand. A few more months went by and I chased it up regularly and in February 2015 I received a letter stating that my reconsideration had been rejected. I was devastated and by this point I was struggling with work after having moved to an admin position and was not up for a fight, but I knew that I was entitled to this support, so I sat with a friend who has a better understanding of the process than me and we sent off an appeal, using the information on the Disability Rights website to help use with the answers. I received another letter inviting me to an appeal hearing in July 2015 and thought I’d better get some professional help with this! My friend recommended Disability North and I got in touch with them and was assigned to Steve who was a brilliant support and gave me very helpful advice. They often attend appeal hearings with clients but unfortunately Steve was unable to attend mine, but I managed to get through 2 and a half hours of being interviewed by a panel consisting of a Judge, a Doctor and a care worker. There was also a representative from DWP there to give their side of why they had not awarded me the points.

It was a horrible experience and I was told by the clerk of the court that they usually lasted about 30 mins and that I had done really well! I felt battered, it was bad enough having to justify myself to 3 strangers, but the DWP rep wasn’t disagreeing with me anymore over the 2 extra points that I wanted as I had been given a toilet frame by Gateshead council a few months previously and they now saw that I needed it so were happy to give me the points!!! So it was the panel who felt they needed to question me for that long!

To anyone applying for PIP I would say do it, but get some help before you do anything as you could have the experience that I did. The Citizen’s Advice Bureau also provide support and advice for applying for PIP and there are a number of organisations across the country that provide support, so get in touch and get the help you need.

Have a read of my recent blog about my experience of getting my PIP reviewed this year: PIP assesment https://adventuresofstickgirl.wordpress.com/2016/06/15/pip-assesment/ via @stickgirlvic which was much quicker, but still not great!

I thoroughly believe that working can help both your mental and physical health, my doctors and other health professionals all agree that having a structure to your day, being able to interact with people and affect the world brings huge benefits to people. After working as an employment advisor with people on ESA with chronic health conditions and now being in the same situation myself I know how hard it is. Just claiming benefits is a stressful and depressing experience, but knowing that you are doing something to help yourself and your future is great. I’ve had to leave my “proper job” this year due to being off sick more often than I was there! Working a 9-4.30 day was just too much for me, and add in the stress and challenges of redundancies, disciplinaries and grievances and it was just more than I could manage. So now I am claiming ESA and on long term sick, but I am still working my Aloe Vera business as well. This helps me have a structure, I do 2 meetings a week and then plan my deliveries around seeing friends and family. It means that I have something to focus on, keeps my brain working and gives me a sense of purpose and feeling that I am worthwhile and productive. 

Doing “permitted work” on ESA is such a brilliant idea as it enables us with chronic health conditions to slowly build up to getting back into work making enough to support ourselves. My plan is to carry on doing a few hours a week retailing my products and build a team of 5 other people who want to do the same thing. With my management, training, coaching and advising experience I am really excited to be able to help people to build their own businesses around health problems, and other commitments. This will mean that I can adapt my week to be doing training, planning and support with my team and continue to work a little around my health doing something that I love and being able to help people as well. If you know someone who wants to build up to a full time income doing a few hours a week with products that are amazing, and a company that has been going for 38 years then let me know and I can talk them through what it involves.

If you’d like any more information on discussing and implementing reasonable adjustments in your workplace, claiming ESA or PIP or doing permitted work then have a look at the links below or get in touch.

I know that I am lucky to be able to do as much as I do, even though it is getting smaller and smaller at the minute! I am a warrior! I am a fighter who is up for a challenge, and I am committed to making my future as amazing as it can possibly be, within my limitations, and putting myself and my health first!

Good luck with doing what you can when you can! 

Vic xx

References:

https://www.gov.uk/definition-of-disability-under-equality-act-2010

http://www.equalityhumanrights.com/private-and-public-sector-guidance/guidance-all/faqs

https://www.gov.uk/employment-support-allowance/eligibility

https://www.gov.uk/access-to-work/overview
https://www.gov.uk/pip

http://www.disabilityrightsuk.org/personal-independence-payment-pip

http://www.disabilitynorth.org.uk/

https://www.citizensadvice.org.uk/