Too unwell to attend capability hearing, job changes forced me out, total nightmare

[WorkNightmares]

Will try to keep this as brief as possible but it's complicated and I'm stuck in a nightmare. Have name changed as it's very outing but must include details so it makes sense...

I work as a PA for a disabled person (lets call them Sarah) funded by Direct Payments from social care. Sarah has a very severe physical disability. I'm one of a team of 6 who provide personal care, do housework etc. We're all on part time contracts but expected to be potentially available from 7am-11pm, 365 days a year. (Actually, point to note - potential new starters (job has high turnover) are apparently allowed to be unavailable certain days, which doesn't seem to apply to everyone.) I've worked in this job just under two years.

I have autism (diagnosed as an adult) which I disclosed at interview. I don't have problems reading body language or other "obvious" traits but I do struggle. This has been a very difficult year for me in various ways, and unfortunately work has majorly contributed to that.

I ended up having two months off sick in the summer after reaching complete (autistic) burnout - the first couple of weeks I couldn't really hold a conversation or eat properly or anything. I also struggled with suicidal ideation.

I returned to work and had to deal with a harsh/antisocial timetable as well as a very upsetting meeting where I felt overwhelmed and unable to speak up for myself. I managed to continue for a while and thought it was going to be ok but have ended up breaking again and being signed off again.

Obviously the fact that my boss is the same person that I provide care for created a very unusual, and now difficult dynamic. In another job I'd feel more able to stand up for myself or ask for reasonable adjustments that actually help, but I feel I can't say anything and am treated as though it is a personal failing to be off sick or struggle in any way, and directly against my job description to not completely willingly and smilingly serve, or to cause any stress to Sarah. I feel frozen in fear and swing between feeling angry and guilty.

It wasn't like this when I started. Some things are to do with the dynamic and how it feels and some are actual changes to job conditions. I actually worked about 50% more hours last year (I'm now reduced to contracted hours only), but things are so much harder now despite fewer hours.

One big issue is the timetable. Random, at 2-4 weeks notice. This means you can't book anything in advance to avoid working days, yet also more last-minute things end up being missed because you didn't know to book it off work. This has been a real problem for me this year as I've missed chances to be with friends or do nice things that help my mental health. I'm single, regretfully childless, and live alone so this stuff is important to me not to end up hopeless and isolated. (I did try to explain this when asked to explain at returning to work meeting what had led to burnout, and was told by Sarah's relative (there for her support) that "work comes before social life". This comment is haunting me.)

When I started this wasn't so much of a problem as we could ask not to work on specific days/times if we'd something planned, and our hours would be timetabled to avoid these. When short staffed we were encouraged to do this rather than take holiday (which we'd get paid for if not used). We we told this would change when there were enough staff but it's gone too far - on a 16 hour contract (a full days work is 12 hours) I'm expected to take holiday just to ensure a specific afternoon off.

Another issue is expectations that contradict. For example being told we can't book any holiday when short staffed earlier in the year, yet also being told I should have taken time off sooner to avoid burnout. I used to feel valued and that there was give and take, now I feel like a failing servant.
I should say - I was actually good at my job and also at providing last-minute cover, but the conditions are killing me now.

I had an occupational health assessment a week ago (triggered by summer absence) and it has been recommended that I be given a fixed working pattern as a reasonable adjustment. I seriously doubt this will be considered "reasonable" and pretty sure I'm about to be fired. (Another point to note - one staff member is given one regular day on the timetable, but no one else is. This is Sarah's preference.)

I've been summoned to a capability hearing, with six days' notice. This is at work (Sarah's house). I've been told I can take someone with me, but I don't think there is anyone who is actually suitable to accompany me, let alone at such short notice.
I cannot go to this meeting - I have to manage things in my life to avoid meltdown or shutdown, and atm I'm on the edge all the time. I cannot ignore the warning signs of meltdown, I have to keep myself safe. I'm terrified I'm being forced to do something that will make me ill, and that I won't be able to keep myself safe to get home or afterwards. It's been so long since I had a public meltdown and I can't bear the humiliation and pain. I know very few people who could even cope seeing me like that, so can't ask for support.

I don't know what the hell to do.
The awful thing is that is it work that is making me feel so horrendous. Every time I start to feel a bit better or think of a sensible way forward (for example cutting hours to one, regular day of the week, plus continuing to provide short notice cover on occasion) I get another email that makes me feel terrible and too scared to say anything. I had one this week telling me I was compromising her safety* because I hadn't provided a sick note fast enough so she didn't know whether to get cover. This was after keeping her informed how long the note would be for, chasing up the GP, and a delay on the GPs part. And the occupational health report that stated I would need 2-4 weeks more off.

[*This is concerning as she previously mentioned/threatened I could be put on the POVA register (like child protection but for vulnerable adults) for compromising her safety by becoming unwell on shift (she also seemed really displeased with me immediately calling for emergency cover once I realised I couldn't continue).]

Sarah has also previously stated that my emergency contact is insufficient as I don't have someone who can drop everything and collect me from work, and that I should have someone who can help sort sick notes and communicate on my behalf (this was from when I was first off in the summer, and couldn't really think or communicate). I don't have someone who can/will do this.
It's so upsetting and frustrating that I am expected to have some sort of upaid carer always available, whilst Sarah - who has an actual care team, family/husband around who can help is supposedly in grave danger if a member of the team is off.

I feel angry that I am being set up to fail by a meeting I cannot possibly cope with (presumably so I can be fired without notice), and that my job conditions have changed to the point I can't continue, that expectations have pushed me over the edge, that I can't ask for actually helpful reasonable adjustments, and that having a disability and trying to manage it is seen as a personal failing (by another disabled person!), and that expectations are contradictory. I used to feel that the job, and Sarah, were wonderful, now I feel I accidentally joined a cult I'm about to be kicked out of for not being sufficiently devoted.

If it was a company I'd be fighting for my rights (and hoping they would pay me off tbh, it's too toxic to go back) but as it's a disabled individual I feel like a total twat for even typing that.

Sorry this is so long, any advice appreciated.

Just leave and get another job. Nothing is worth this bullshit.

This. Just email saying you're not attending, hand in your notice and get signed off for the rest of your notice period. You need to prioritise your health.

It doesn't sound like you are well matched to the client. Other people do not manage their care assistants in such a random way.

From her perspective, I can see that you having had the time off and struggling would be a problem - she is physically dependent on you and has to be able to trust you and trust that you will show up, and the other people on the rota may not be able to pick up what would have been your days over a long period of time. It may have been quite frightening not knowing if someone was coming.

Do you actually like this type of work? I just wonder if you would be happier doing something more structured with clearer shifts or 9-5 and less 1:1 relationship-building.

She could have structured shifts if Sarah was more reasonable.

Why on earth wouldn't you keep the rota to set days for the same people once you'd established what works for everyone? Then everyone knows where they are.

Find a different, more reasonable employer op. There must be plenty of care jobs, with the turnover in that industry.

You need to leave this job, you are being taken advantage of and have done your best so it's time to walk away. Hand in your notice and get signed off sick.

In my area (and I think everywhere is similar right now) places are absolutely crying out for experienced care staff and you will get a new job quicker than you think.

In your position I'd go for something like a hospital (I'm NHS) or care home, where it will have a proper management structure and a process for arranging time off.

I don’t think zero hours care jobs provide a good work-life balance for anyone. They’re ‘needs must’ jobs. Add to that your own health conditions or being neurodiverse and it’s a recipe for disaster.

If I were you I’d look for something far less high-pressure and walk away from this shitshow.

was told by Sarah's relative (there for her support) that "work comes before social life"

This won't get any better. They don't respect you one iota.

You must have brilliant skills to do this line of work, and everywhere is crying out for carers in different settings; put yourself first OP and look after yourself- I wouldn't go I would hand my notice in and look elsewhere. Nothing is worth destroying your own health and life over, especially when there are so many other opportunities out there.

She sounds like a complete bully. Threatening to put you on a register because a GP delayed for note is disgusting.

Do everything you can to leave.

This job is not for you. Find one that suits your needs and skills. The fact that you don’t feel that you can attend your own capability hearing says it all.

I mean this kindly but this is not the right job for you, and you are not the right person for the job (no judgement, I couldn’t cope with that level of demand or uncertainty either).

Employers only have to make reasonable adjustments to help you complete your duties... I can’t see any reasonable adjustments that would work for both you and your employer.

If you otherwise like the role, have you considered working for an organisation that provides care, rather than directly with the client? You might find that a larger organisation has more leeway in meeting your needs.

Good luck OP. Finding that one job doesn’t work for you doesn’t mean that you won’t thrive in a different role or organisation

Wow! I worried someone was writing my story at the beginning!!
I work as a PA to an individual, am Autistic, and also had 3 months off over the summer to due burnout!!

The difference is the person I work for has a case manager as they are unable to manage the package themselves.

We have contracted hours, HR, and any spare hours are done as bank shifts should we wish to.

I've done this or similar work a very long time, and never known a whole team to be run this way!! Everyone should have stated hours, OR does your contract say x number of hours per week, rota to be given x amount of time in advance?
I've previously worked in jobs where I'm given my rota 4 weeks in advance- so I could plan stuff, just not long term. That no longer works for me.

I personally would cut my losses and leave. There is nothing good for you left in this position.

Would you be more able to attend the meeting over zoom?

If you feel capable you should speak to the CAB for advice.

If it was a company I'd be fighting for my rights (and hoping they would pay me off tbh, it's too toxic to go back) but as it's a disabled individual I feel like a total twat for even typing that.

People with a disability can still be nasty, horrible people. They're still human afterall!

Just leave? I don't understand why you have dragged it out this long.
I can't imagine you are being paid huge sums to stay so why have you stayed in a job that has caused you burn out like this?

And I "don't understand" why you would leave such a judgemental comment. There could be a whole array of reasons - some related to OP's own disability.

Good luck OP - ignore the ignorant.

You are being bullied. She is a nasty, unreasonable person.

No one could cope with this.

Care workers are in high demand. You will be able to find a new job very quickly.

Can we help you draft an email to resign and request a reference? Have you called ACAS? ACAS will liaise with your employer on your behalf in cases of constructive dismissal, which this would be.

So they will get a guarantee of a reference and monies owed without you needing to speak to her or go to the meeting.

This, they are horrible bullies and are wrong ly using legislation to guilt you into submission.
Leave ASAP!.

Just leave op. You’re fighting a fight that can’t be won, your needs and the job requirements do not match. You need to look for alternate employment that suits your circumstances and Sarah needs to find an alternate employee who can commit to the role as it is.

I'd leave. It's clear that the meeting is not going to be fair and balanced and looking at both sides of your scheduling issues. Sarah is asking for fairly unreasonable working conditions for her support workers and IMO is putting herself at risk by doing so. If she had a set roster then shifts would be covered and that would be known in advance.

As someone said upthread, just being disabled doesn't make you a fair or nice person or a good employer. All the support workers who work with my family have been with us for years and communication goes both ways. We have set shifts with flexibility as needed on both sides.

I am a personal assistant and it's the sort of tile where the most important thing is how you get on with your employer.
Could you try and look for another Pa role with a more easy-going employer?
Good luck op

Speak to ACAS about support with the meeting but honestly it sounds as though you would be well out of it.

Look for a care job with a proper management structure, either in a care home or hospital or if you prefer to work in the home via a case manager or agency.

You need a lawyer. Sounds like a possible constructive argument unfair dismissal to me.

Get another job.

They want someone committed who isn't going off long term sick and hasn't got emotional difficulties or life difficulties that get in the way of doing job. Their relative is disabled and needs support, they don't want to have to manage your needs as well.

Come on OP, be fair.

There are plenty easier jobs out there. Do yourself yourself and your employer a favour.

In my area, they are crying out for care workers. This job just isn't working out for a myriad of reasons but you still have your skills.

Have you approached anyone else in your area for work? My friend works in a care home and has a 2 month rota known at all times and does book holiday in advance outside of this so they must have a way of building these into a rota. Have you approached any local care homes for work?

I really think folks should not be rushing to judge Sarah and hurling abuse that she’s nasty or a bully. This woman is severely disabled and has a care team of 6. This is likely to have am impact on her needs, behaviour and management skills, there are clearly others involved in Sarah’s care and ensuring what is required is provided. if the job requirements don’t suit the op. Then she needs to leave.

I feel you’re being set up. Awful employee who is focused on her own needs and failed review the issues and made adaptions. She could easily follow the recommendation to give you a set shift pattern but refuses. Are you able to tell her your availability more generally ..‘I can work any day but not Saturdays, Fridays or Thursdays’ If you are not with a union, join one immediately and talk through the issue with them. You need representation and professional advice.