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.

I worked in this job for more than a year with no issues. It's only because things have changed there that it's become so hard.

I'm not being paid huge sums but it is 25% over minimum wage which is good for care work. This is important as I can't cope with a full time job, yet live alone so have to manage somehow.

I can't just walk into another job. I possibly could with a care job, but this job has broken me and I can't cope with changing shifts and weekend work any more. I also injured myself physically which GP described as an "occupational hazard" and I'm just done with it. Also having to be shrouded in plastic aprons in a hot environment, and the damn masks...

(It's crazy, I worked long hours during the heatwave last summer, I coped fine with it. And last year I worked 25 hours a week compared to 16 now. But this year has just driven me into the ground.)

I have no idea how I'll get another job without references.

Before this job I was unemployed for over a decade. I'd had poor mental health/lots of trauma... Had to get better alone as mental health services despised me. Really bad times.
Had to figure it all out alone, get some private therapy, eventually twigged I might be autistic and eventually got diagnosed...
Did get a degree in this time too.

But this was my first job after all that. I had to go anywhere that would be willing to employ me. Started on 10 hours/week (was still able to claim disability benefits for a time) and once I'd got into the swing of things was doing 25+ hours/week. It was supposed to be a first step then a better job.

There's something else in my life I don't want to talk about but it made sense to stick this job out a bit longer, rather than get another one this year (obvs I wasn't expecting things to go so wrong at work this year).

I seem to be totally fucked.
I've no idea how to get another job with basically no CV or references.
Yet I need one as I am not entitled to benefits any more (savings - was extremely lucky to inherit enough to buy a flat with a v small mortgage, an absolute godsend to massively reduce housing costs so I can work part time. But I need a new job to be able to buy! So financially I'm not in a desperate situation but it's a bit of a disaster as buying is on hold whilst deposit is eaten into to pay rent).

OP from the challenges you've described here, surely you should be entitled to disability payments - have you sought assistance with completing the application? It is tricky to word it comprehensively enough so help can be useful. NAS may have help available.

You can definitely get a new job. Why do you think you won't get a reference? Most reference requests only ask for basic info. The periods of absence won't help, but the longer you wait, the worse this will be. Surely you need to at least try.

Have you had any employment advice @WorkNightmares from an organisation that helps people with autism to navigate the world of work? I'm just wondering if a call to The Autistic Society might be helpful? They have a section of their website dedicated to employment:

https://www.autism.org.uk/

Help drafting an email would be really helpful actually. That's very kind of you.

I haven't called ACAS, I did wonder about it.

Are you sure it would count as constructive dismissal? (Also this is what I'm worried about, feel like a total dick for even thinking about this.) What difference would it make if it was? If it's anything financial it would be social services I end up fighting, as they fund it all.

And surely I won't be able to get a reference? Or at least not a worthwhile one.

I'm so worried about this. I had been counting on this job to get a decent reference to get a better job. I've sacrificed so much for it, especially this year, and now I have to leave with fuck all but a sense of failure.

Can future employers tell if it's been constructive dismissal? Ie. would I look like an unemployable horrible person who filed a claim against a disabled person? And what about sick leave... It's so awful, they won't know it's because the job caused it.

I would jack it in personally and look for another job. Everywhere seems to be looking for people.

@WorkNightmares a lot of references now don't go into detail, ours just state job title and dates of employment.
Agree with others you need to leave asap. She sounds like a terrible employer.

I don't think people should be rushing to call Sarah a bully either.

However, she works in a professional field and actually manages people at work, so the idea that she's helpless in managing her care team isn't quite right.

Also the reason there are up to 6 PAs is that she prefers to have many people on very low hours.

The job requirements were fine when I started. It's the job that has changed, not me.

It's very odd because from a disability rights POV of course she should pick and choose what she wants done and how. But as one of the humans on the other end of it I'm very aware that comes at our expense.

I pulled out mid shift, after arranging cover, ONCE.

I worked in this job absolutely fine for over a year. The job expectations have changed.

@greyhairnomore - that’s true lots of the more recent references I’ve had have been purely dates and place worked. One ex boss did write a few nice extra bits but he didn’t have to.

OP, I’m sure you can get a CV put together even if it’s just with details of this job, your degree and other things. Maybe speak to a professional CV writer.

How long have you worked for her? You mention a year but have taken several months off? You might need to demonstrate discrimination for your disabilities to claim unfair dismissal if less than two years. Try not to think if this personally, the arrangement is not working on either side. As long as you get a reference move on rather than battle.

An employer though, is entitled to make changes as to the T&C of your employment if she sees fit and it’s reasonable.

It looks like she has 6 PAs on very low hours, is this to save money?

I’m not sure if you are dismissed this would fall under constructive dismissal as you’re having a capability hearing.

If I were you I’d call ACAS, citizens advice and maybe get a free 30 min consultation with an employment lawyer to see where you stand. I’ve had the latter before when I’d worked in a job for 6 years and suddenly my boss was stating to recruitment agencies untruthfully that I was dishonest. In the end I just left but I’d had 6 years blemish free work record there and survived a few rounds of redundancy too.

You’re not the right fit for Sarah any more and vice versa. It’s no reflection on you OP. You have not failed. Let her know you’ll leave quietly if she gives you a reference and part semi-amicably if you can. None of this is worth a ton of faff and hassle.

To those commenting on Sarah having 6 staff on low hours - I would imagine this is so she has plenty of back ups when there's sickness or someone leaves. Relying on one or two would be very risky in her position.

If I've ever had a random sick day I've arranged cover (this includes going into work physically ill until someone could relieve me, as shift starts v early before colleagues are awake). Obviously once I was signed off sick for longer the rota wasn't my responsibility. Fwiw I know someone else who works there so did happen to know that she covered all my shifts and was glad for the extra work/money at that point. I did worry about it which is why I forced myself to carry on for as long as possible. I was devastated when I had to go off sick.

I wasn't really able to communicate properly with anyone when I first reached burnout. (It's a thing that can happen with autism but I honestly don't remember it being anywhere near that bad for years and years.) I had communicated I wasn't ok and would be getting a sick note, I didn't leave her not knowing at all. I couldn't seem to get it together to do the basic things, talking, showering, making food seemed horrendously complicated.

What gets me is that she expected me to magic someone up out of nowhere to look after me. My comment about not having a husband and family around was directly in response to a poster saying it would be terrifying for her not knowing if someone was going to show up. It's not as if she's alone. (And not have I ever simply not shown up.) Whereas I am, and do not have back up close people to turn to if I reach the point I can't function.

I'm not seeking mental health help because (a) the services wouldn't see me, and (b) I'm not having a mental health problem, its just actual things in my life that are difficult, whilst trying to recover from autistic burnout. I normally face all the difficulties with humour and resilience, but I have been floored and need to recover.

At this point you need to accept that this job is over.

It may be worth offering to resign in return for dropping the capability proceedings and getting an ok reference.

I think you need to think very carefully about the outcome you want to achieve and try and negotiate that outcome. Going down the formal employment law route would not keep your job and it is very stressful and long drawn out but of course you have the right to pursue it if that’s what you really want. If you are dismissed before you have two years service then you can only claim unfair dismissal under discrimination grounds for your disability. Good luck with whatever you decide to do and as others have said you may wish to take advice first.

Skilled carers are in high demand. Just leave this role, it sounds awful.

Apply to do agency care work. It will be fine reference and CV wise.

Checking back in and seeing how you're doing, OP. Hope some of the thoughts shared on the thread were of use to you and experienced as supportive. 🌻

Sarah sounds like a bully and I wouldn’t expect it to get better. Honestly you need to take care of yourself and if this is not the right job/making you ill I’d be looking elsewhere

Oh OP, I feel for you! I worked for a ‘Sarah’ as a live-in, he was incredibly difficult to work with, wouldn’t speak to me unless it was for something he wanted me to bring, clean or do, and never once uttered a single good morning, please or thank you. He only let me sleep for four hours a night as he wanted me up till midnight providing care, then to get up and start cleaning every day at 4am before driving him 20 miles to work, terrified I was going to crash and kill us both because I was so exhausted. I wasn’t allowed to keep my own phone on me even when he was at work for 9 hours, just a PAYG he gave me so he could summon me.

It felt like a fucking labour camp, I was so physically and mentally burnt out after just four weeks of that shit that I had a bit of a breakdown and rang my agency to beg for immediate cover before I jumped off the roof of his block of flats, so hats off to you for doing two years! Life is WAY too short to work for Sarahs ❤️‍🩹

@WetBandits
That sounds absolutely horrendous. Glad you got out asap.

Sarah is nowhere near that bad. I suspect what has happened is a misjudged attempt to avoid being taken advantage of or being too soft on employees. Unfortunately from the PA side this means the previous give and take that balanced out the harder aspects of the job has disappeared. Especially hard coming back from sick leave and being guilt tripped and treated as if it's a personal failing right at the point I needed to be gently eased back in.

I've ended up stumbling on a load of psychological literature on the subject of disabled employer-PA relationships which has been fascinating! The themes and difficulties that come up are exactly the sort of things I've been wrestling with.

Anyway. I handed my notice in.
Thank you all for the advice and support.
I'll probably be posting again soon once I've got myself together, with a job hunting advice thread! In the meantime I'm thinking about @SwishSwashSwooshSwersh 's suggestion about agency/bank care work for the time being.

Good for you! There's better employers out there.

@WorkNightmares have you ever considered working as a PA on a self employed basis?

That's what I do. I also am autistic and have ADHD. I'm not employable as an employee realistically.

I set my fee at a reasonable rate but one that offers me an ok standard of living with only working part time hours.

I pick the clients I work with and have multiple clients for fewer hours rather than an all eggs in one basket approach.

I also only take on clients who is not critical if I'm unable to attend for whatever reason.

I set my own schedule making sure I have decent amount of breaks, ring fence days off and am just generally more in control of my life.

Well done, OP, in putting your own wellbeing ahead of someone who, let's face it, has a track record of being unable to retain PAs.

Onwards and upwards!!