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.

It seems strange that Sarah and family are going to the bother of a capability hearing. Surely as OP has been there less than 2 years, they would be easier just to ask her to leave.
It feels vindictive and personal, surely they would be better focusing on getting a reliable replacement and creating a more consistent rota for everyone.

Why would you want to stay working in such shit conditions. There is a national shortage of care workers just hand in notice and get a job more suited with less draconian conditions attached.

I’m pretty sure you would end up taking many more days off if you had been asked to do twice the amount of hours you were supposed to do, work under huge pressure with constantly changing shifts that stop you from living your life.

Because disabled or not, the result if such attitude towards your staff is that either people leave or the end up ill.
Nothing to do with the OP unable to cope with the job due to her disabilities.

(and btw you can be ableist when disabled yourself, just like you can be sexist as a woman)

It is fairly clear that the relationship between you and Sarah has broken down. I don't get why you haven't left yet.

Agree with pp. You don't need to put yourself through this. The set up is not compatible with how you need to plan ahead. Sarah sounds nasty and vindictive, deliberately setting you up to fail.

Would you accept to work in such conditions though?

Because it seems that a lot if people who cared fir Sarah didn’t, even though they weren’t disabled…..
In which case, you’re probably right. She might not cope with the role. Because she has what sounds like a shit employer that doesn’t respect her.

Sarah is disrespectful, a bully, unreasonable and, quite frankly, nasty! You are worth so so so much more than this. Get signed off sick, hand in your notice and don't look back. Ignore the threats, when you are in better health you'll see them for what they are - nonsense!

You have skills that are in demand. Look for a new job today.
Maybe more structure like in a residential care home, possibly with young adults, might be more suited to you. Proper employers and proper shifts.

I work 60 hours a week on average in a high stress job that often has unpredictable hours. I also work with some very vulnerable people. It's a responsibility.

OP is in the wrong job.

People telling her to drag it out are making things worse for both parties.

Having a disability doesn't mean you can stay in any job regardless of capacity.

https://adultcarevoice.co.uk/best-websites-to-find-care-worker-jobs/

This job is no longer the right fit for you, OP, and your post reads like your relationship with Sarah and her family has broken down. If you are financially able to do so, hand in your notice and, as PPs have suggested, ask your GP to sign you off for your notice period so you can regain some equilibrium and consider your next steps.

Ignore the perceived threat about the POVA (now Barred) list. Becoming unwell on a shift is not grounds for that (particularly if you have an OH assessment which recommends for adjustments that have not been given adequate consideration and you called for emergency cover to ensure Sarah's safety).

Stay well OP - autistic burnout is a bugger xx

This is far from acceptable. Hurling abuse at a severely disabled woman who requires a team of 6. Her husband and family, as well as official services will be overseeing Sarah’s care.

Notice of future shifts are given between 2 and 4 weeks notice. That’s a lot. Due to the nature of rhe ops own disabilities, she and the role are no longer compatible.

no one needs to be abusive on line here.

You need to look at what you are being paid and if it is worth fighting for this job. Care workers are hard to find, if you want to be in the field, you can probably find another position. You can also likely earn similar or more money working another type of easy to obtain, high demand job.

sometimes you just need to accept that a situation is not going to work. This employer doesn’t respect her care team enough to try to establish a rota. I know with autism we often get fixated on the way things should work, but most people don’t operate that way. They are inefficient and frankly often a bit, let’s say short-sighted. You have to accept neurotypicals for who they are.

Totally sweeping over the bullying and lying from Sarah and her family.
Are you saying its OK to only know 2 weeks I'm advance what you're working?

Noting negative behaviour is not abusive. Sarah is hounding OP and damaging her health.

Hi all, I've just come back to this and been amazed how many replies there are. Will read through them all when I have a moment later.

1- it’s not because someone is disabled that they can’t ALSO be nasty, a bully etc… and the fact they are disabled shouldn’t stop anyone pulling them up on that
2- seeing the high level of staff rotation and the fact the OP has been doing double shifts for a long time, I’d say the issue has nothing to do with the OP disability but everything to do with the way as an employer, Sarah is treating her employees.
3- if you think that 2 weeks notice is normal re changing shifts, then good for you. But I wouldn’t dare expecting that from a family member caring for me. I’m not sure why it would be ok to expect that for paid staff. Being a paid (or unpaid) carer, even more so if you are part time!, doesn’t mean you are supposed to be devoted to that person 24/7 and should give up all hope of a private life.

u need a union.

Just because someone is disabled, even severely disabled, doesn't mean they can't be unreasonable or worse. Let alone the input from the relative. Yes, stress and pain are probably factors but you're human too.

If you leave there are hospitals, care homes and other private clients who will treat you far better than this and who are crying out for staff. Take a quick look on indeed to see just how many care jobs are out there, and that's one site.

I hope you find a resolution.

I worked for many years in care, OP and you're not in the right sector. One of my main clients was a lovely man who was left a quadriplegic following a car accident. He was younger than me, and the poor bastard couldn't even clean his own teeth. He was demanding, could be snappy and rude but I never took it personally because he hated what his life had become. Other carers in the team were an absolute nightmare taking offence at his attitude, calling in sick at short notice. He had to have strangers in his home 24/7 whether he wanted them there or not.

Your client has a severe physical disability and I'd imagine she'd swap places with you in a heartbeat. If you're not physically and mentally up to the job, don't inflict your personal needs/issues onto her and expect her to work around you. FInd something that works around you better.

I’d say based with very loose HR knowledge that OP’s employers realise she’s been there just under 2 years but if they do sack her with no good reason, then OP may have recourse to take them to a tribunal or get Citizens Advice or another employment specialist involved, OP may bring her autism as reasons she’s being treated unfairly. That’s what I’m guessing though and I’m no HR specialist just have seen the way similar cases have panned out, especially recently since covid 19.

I do think the employer needs specialist care which OP can’t give and it’s not even that OP isn’t suited to this role, it just seems that after almost 2 years OP isn’t a good fit but the employer and expectations around her seem to be ever changing and very demanding. It would be interesting to know how long the other carers have worked for her.

Almost always with capability hearings on this scale, they’re biased in favour of the employer and not the employee so no wonder she feels defeated and doesn’t want to attend. I’ve had a performance plan put in place for me at one job and I knew if I completed it I’d fail as it was biased in their favour with lots of employee/employer grievances and power plays.

Thing is, I used to be good at the job until things changed this year. We got on well, and having seen the other side of the recruitment process I know this is her main consideration.

I do like caring for people but this is different. This is more like being a servant.
I'd love a mon-fri 9-5 type job, but it's not relationship building that is the issue, I quite like that (I'd go insane if I was just doing something on my own, parts of this job I'm on my own doing housework and it's the hardest part of the day, I just mentally go downhill fast until it's the sociable bit again).

I'm not sure about it "being frightening not knowing it someone was coming". Ive never not shown up for a shift, I've always got cover if ill (and covered it others are ill). She isn't alone, she has a husband and other family around if for some reason no one showed up to work. Maybe I'm finding it hard to empathise with this because I really am alone when I'm struggling. She can't seem to comprehend that I don't have someone to look after me, attend meeting with me etc.

I fund it interesting that so many are shocked at the short notice rotas - this is normal practice in my part of the NHS. The policy says we should get 3 weeks notice- but until this year, it was often less. I really struggled with it due to needing to organise childcare - other colleagues didn't seem to mind. I can see why Sarah isn't offering set shifts though- who wants permanent nights or weekends?

This is not the job for you OP regardless. In the short term, why not ask for the meeting to be via Zoom? I can see both sides of this - zero communication and sick lines when off sick really isn't acceptable to be honest, for any employer. Two periods of long term absence in a year also wont work in this role. It definitely would trigger capability. You're saying there are also issues with you becoming unwell in work and unable to get home too? The thing with reasonable adjustments is they do need to be reasonable and it is sometimes the case that an employee is simply not suited to a role. Eg my previous manager was on the spectrum and it absolutely led me to be burnt out and at the point of a breakdown. I had huge empathy towards her disability - my kids have ASD, I want them to be accepted in the workplace some day. But some jobs just aren't suited to certain people, my manager should have known she couldn't adequately perform this role. If she hadn't have left when she did, I would have.

Anyway my point is, there are many jobs out there that you are suited to and lots of amazing employers that will be lucky to have you. You don't say if you e tried to get another job or not, but you absolutely should. What's to be gained from staying in this role that is clearly completely incompatible with your own needs?

Op some of your points seem a bit contradictory. You were unable to communicate at all with your emoyer during your absence, but now you say you organised cover for all your missed shifts?

ALso the last bit of your post is so strange. Your MH sounds really bad, are you seeking help for this? Feeling a lack of empathy to her because she has a husband and family when you don't is strange and you saying your mood dips when you have to clean.

It's all quite strange to me. Anyway, hopefully you find something more suitable soon.

Since care workers are in such demand OP, can you really not a find a role that would suit your needs better? After all, you are a person with a disability too and your health needs to be balanced with the needs of the person or people you're caring for. I wouldn't stress yourself out any more with this job. Tell them you're not going to this meeting and hand in your notice with immediate effect. Nothing and no one is worth destroying your mental health for! Then look for another job that will suit you better.