To wish there was more support for those with chronic illness who want to work

It’s an online website and I think it used to be a forum. They provide all manner of guides and information to help people navigate the process of finding out what you are eligible to apply for and it explains how you navigate the forms and the criteria that they your answers are marked against. If you use the incorrect wording or don’t provide enough examples then it counts against you and everything you say needs to be backed up by evidence. That’s why the vast majority of people don’t get an award on the first application. They don’t know the “right” way to do things. The goes are put together by professionals that work/worked in the system and solicitors etc.

https://www.benefitsandwork.co.uk/

https://www.benefitsandwork.co.uk/

It's sad but I agree that your work needs aren't comparible with most employers' needs and it would mean an extra burden on other staff covering for you which often causes resentment. Working from home with very flexible hours could be a possibility.

@CantMakerHerThink sorry for the silly question but what is Benefits and Work and how do you join it?

PIP is not just £30a week. I have RA with secondary sjogrens and totally feel your pain. I’m on biologics and pain killers and also get every single bug going. I get £770 a month. It’s definitely worth you reapplying and if you join Benefits and Work they have guides will talk you through how to fill the form in thoroughly using the correct formatting and explanations and what evidence to submit. I filled in the form with their guide, had a 15 minute phone nurse appointment 5 months later and was given a 5 year award.

I can’t think of many jobs which can survive such sporadic attendance and high levels of sickness absence. I work for a very large employer but on a local level departments would struggle day to day.

Of course, the cost implications are less impactful but we take people on because we need them to perform a job. And managing high levels of absence as a manager is incredibly time consuming.

I totally get that you want to work, I would too! But the arrangements you seem to need go beyond what I would consider reasonable adjustments for most roles.

Maybe some kind of 0 hour contracts could work? Where the hours are available at short notice so you could accept or decline them based on how you’re feeling.

I feel for you. It sounds rough.

Edited to add - I do think it’s easier to get more flexibility if you’re in a role when you become disabled.

Loads of disabled people do work! Loads.
But there's a huge element of luck in terms of finding a truly supportive employer

I am really lucky. I have an unpredictable condition and I couldn't work out of the home regularly or in a physical job, but my work support me to take time off when I need to and am able to work flexibly

I have round my "safe haven" in the public sector and feel very supported.

But I could almost certainly earn 2x-10x as much if i wasn't ill and could work in the private sector. (I am lucky to have sought after skills and training)

That there are a lot of ideas for working at home for people in the same situation as OP

Haven't read full thread, but have you explored 'Access to work' scheme.

I'm in a similar (but I think less severe) position so just sharing my story in case it helps at all. I developed inflammatory arthritis during my 2nd pregnancy and for a while struggled to walk until meds kicked in. I presume the injection is methotrexate? I found same, really struggled with infections and being wiped out for a day or 2 after. So I moved to sulfasalazine which is so much better in terms of infections and not wiping me out. Have you explored other options around medication?

I also claimed PIP and used to buy a 2nd hand automatic car with cruise control which really helps in bad days as my feet and knees are the most affected.

My manager got me Dragon talk to type, supportive seating, specialist keyboard etc.

@Ezzee

Wow! 20 hours a week and 50k a year?

What on earth do you do?

I have 2 chronic illness (1 the same as yours) plus other things, I manage to work 20 hours a week sometimes more and bring in about 50k a year.
Just before my illnesses took my mobility I retrained ( 15 years ago) and I was also very lucky that a company I used to work for went fully remote so I reapplied and got the job, my line manager is understanding (ish) and I manage 85% of the time.
Not saying I'm not in pain 24/7 or knackered (chronic fatigue) but I'm now tired for a reason.
What about retraining OP?

Citizens Advice have benefits calculators that will identify which benefits you may qualify for. For example, as your income is fairly low, you may qualify for Universal Credit. That could then open the door for other forms of support.

Why?

Sounds like you need to find something you could do self employed on your own timetable. Have you thought about training to be a bookkeeper or similar? You could do small business accounts each month.

What the blazes does that have to do with the OP? And what makes you think that people aren't working?

@Riiiiiiiight OP is there a Connect to Work programme in your area yet? They are rolling them out all over the place. They offer 12 months support to get paid work (with employers who sign up to work with the scheme ) and four month support once you’re in, There are specific categories for people with physical and mental health issues who haven’t worked for a long time.

Tbf there is an Access to Work Scheme which could possibly support you. The job centre will have disability advisers who should know of suitable courses, potential employers who could accommodate your needs. Have you tried this.

Tbh though not everyone can work. My adult daughter can't work. She has had a lot of support to try though. We are now investigating volunteering.

How did you find this work? Was it through an organisation?

Avon reps and similar were a thing last century. Everything is online now.

Yup.
Plus we also need to be protected from airborne infections in the workplace.
There are some online courses you can do from home though if you would be interested in that. Contact the national careers service to see what's available in your area.
There's so e volunteering that can be done from home too. It could be calling an elderly person once a week for a chat or updating a local organisation's social media.
Do you have a local council for voluntary service? That might be a good place to start.
Also have a look at Even Break who do work coaching and advertise disability confident jobs. And the work from home hub for ideas too.
Good luck OP.

Look out for sessional work posts in the voluntary sector
I employ 3 people on this basis and have just recruited 8 more - some people only do 3-4 hours a week others work 15-20 hours flexibly

I hear you, I stopped working when my endometriosis was taking over my life and became a sahm with the full support of Dh. I could do some volunteer work when the children were at school but they knew I couldn't always guarantee I would be able to come in to do the work. As time went on I had to reduce the number of hours I could do and then it just wasn't worth the recovery time I needed afterwards.

I have always felt like a burden and hated not being able to earn my own money and pay into the family pot. I worked from being 13 years old. I hated relying on another person for financial support. Luckily Dh is an absolute gem and understands when I am having bad days. He also attended every gynae appointment with me, looked after me after surgery and has never made me feel like a burden.

Previously Dh and I shared the nursery drop offs and pick ups and the inevitable sick days but then when I became a sahm it meant Dh could commit to building his career and fortunately got pay rises.

I completely understand where you are coming from about your work but is there any way your Dh could look into another job that pays more? The only reason I am saying this is to increase his pension pot and therefore the money to cover both of you in his retirement.

I would also look into PIP again and do some research on how to fill the forms in to be more successful.

Hopefully you will find something you can do work wise. I have resigned myself to not working again and as lovely as that sounds, it would be great if I had a choice in it. I would like to work, I miss people, office banter and gossip and feeling worthwhile.

But op doesn't qualify for ESA because she hasn't worked for years ? Esa is based on NI contibutions which she won't have.

Your condition won't help, but I think part of the reason you're unable to find suitable work is having been out of the workplace for so long, causing a lack of skills.
Is a zero hours WFH type of job possible for you do you think? That way you have more say over when you can work.

I have RA so I know how debilitating it can be. I'm fortunate in that I can work full time. But because have been in the job for a very long time, predating diagnosis, my employer is understanding and offers flexibility when needed. It helps that my role is not easy to replace. I highly doubt they would take on someone with a chronic condition that limited their capacity to work.

I think you need to get onto your rheumatologist to achieve better management of your condition. You will have to keep at them as the NHS is so stretched. When you are able to, try to gain some useful skills for roles you could realistically achieve working in.
It's very hard, but please not give up hope that you'll be well enough to work again.