Grievance - part two

So, the reply went a bit like this - on the adjustments needed for work, a list was sent and I was aksed - is this what you would recommend we do? BUT, in order for us to proceed, we need a report from your GP (the one who said - give up your job, I wouldn't accommodate you), as we don't have a list of what is required. Therefore this is a 'medical basis' for you being off, and can you send sick notes. So, I spent all morning on the phone and the result of that is I sent back a reply that says this

Dear HR

The last sick note that I sent I believe ran out on Fri 10th of April. It is therefore my opinion that this issue in particular has a more urgent nature, and as such I have made further enquiries as to the legitimacy ofbeing asked to provide medical certificates in these circumstances. I would like to ask if you could also confirm that the time that the time during which sick notes have been used are not part of sick leave, as was my understanding in the grievance meeting.

I have discussed the situation with ACAS and the Equality and Human Rights helpline who are at a loss as to why I would need to supply sick notes,particularly as it is asking a doctor to verify I am unfit when I am not,and would they be willing for this evidence to be used, eg. in a tribunal situation. On their advice, I also contacted Magic Union Rep Man who suggested I make an appeal. I am asking that this email be counted as appealing against thedecision made regarding point 1, in the grievance procedure. Please couldyou advise of the procedure now, and pass this email to any relevant bodies?

I would suggest that to ask a dr to ask to say I am unfit to work when I am not, is potentially fraudulent, and that the grounds for medical suspension are already established by the fact I have a definable disability. If I were blind, and I had to wait for a doctors report to verify I needed equipment at work, would I need to supply sick notes to verify my continuing blindness? Thank you for your assistance.

Signed, Me.

Many thanks to the union man who called me even though he's on holiday, and to the bank who paid me compensation for messing up my address and making impossible to pay council tax and making me wonder how on earth I am going to get a week when I am not fighting an authority on the phone over some kinda weird thing.

I also bake, make soup, write my book and make cards - coz I'm that kinda political activist - the one who'd rather be writing recipes than grievance appeals.

Post grievance fatigue

Today was the grievance.

Me, pregrievance has been a low, low time. I've been exhausted, and crying lots. That's a vicious circle when you are trying to stall well/better - my confidence has been shattered by having to fight so hard for a job, with the constant medical opinion of - please give up now. I have also collapsed an awful lot recently - making the whole are you well enough to work, a bit shaky to argue.

There was me, my union rep and the head head honcho of HR, who was actually very nice. They'd made sure I had a toilet I could use, and wore no aftershave, and made sure the meeting was well explained and ran to time. Two and a half hours, with a break.

On the issue of why am I having to supply sick notes when I am not signed off as unfit to work, I am signed off as 'I'm giving you a note because I have been told to,' they are going to take legal advice to see if that needs to continue. One doctor so far, said, I can't give you a sick note for being told I have to. The HR man said he was deciding there and then that it would not affect the amount of sick leave I'd used up.

On the issue of allergies he said, I see no problem asking people to not wear perfume or aftershave, but it can't be enforced. I think if people sprayed stuff it would be dealt with more severely. He said he would speak to the management to discuss it. I asked if I could also be given an air filter for my desk; I think that may be considered. We discussed at length ways in which the message of my allergies could be communicated.

On the issue of collapsing at work - we discussed how that was to be managed, re first aider's etc. I have to admit recently this has been a harder issue to manage - it's not always triggered by allergic reactions.We discussed the issue of ME and it's effects at length - and the run up and history.

On the issue of the induction process there was much agreement that my induction was handled poorly, that the health issues could have been dealt with more promptly and that much of this is lack of communication. The fire drill stuff should have been well sorted earlier. Yes, they will take lessons learnt from this and apply them. they thanked me for offering anything I had said to be used in diversity training to help people understand hidden disabilities - tricky to do that without identifiying you, but good point, thanks for raising it.

A Happy Disability Story

I love swimming. Water is the only area in which I am on a relative level pegging. I don't know why - but the collapsing is controllabe in the water. Even so, I always, always have a float with me, because that is way safer. It also means I use my muscles but don't overuse them. I can even have a bounce in the water - something I cannot cannot do normally. My best ceilidh for me would happen in a big pool.

So, J and I are doing the swimming pool testing now. There is a nearbyish pool that is small and warmish - but has changing facilities up the stairs - not good. We got sent to other chaging rooms, but they were ground floor ones for the gym, so it was a bit, urm er, don't mind me.

There is a bigger pool a bit further away - so we went there - good ground floor changing facilities. Get in pool. Had forgotten float, so wore armbands instead. Start to swim. A lady calls me over - you can't swim the whole length of the pool. Why? Because you have arm bands on.
So, I explain, I'm disabled , it's the only exercise I can do. We chat -the pool is not much deeper in the area I can't go into, but I am allowed to swim half the pool. They have a lady with epilepsy in the same position - she wears arm bands (then let her be my friend! We can be arm band buddies!).

The lady attendant thinks the rule is crap. Would I like to see the manager? Yes please. I smile lots and lots at the manager, and I explain I know how hard health and safety is, I just wanted to pass on my thoughts. He says, well maybe we could assess you later and consider you on your condition as being ok.

So, I am very good, and me and J swim half lengths. The lady calls me over. Look she says - you can use this long float (it goes under the arms, if you drop that, your goosed. Arm bands are safer), or this training float you strap round your waist. I say, yes please, yes please, and strap the float round my waist. She will look after my arm bands for me.

The new float is BLISS. Enough bouyancy (less than the armbands, but hey, not an arguement I can be bothered having), and enough resistance in the water to make the swim fun. It feels safe, and it means I am allowed to do lengths - which I do, and race J; an absolute luxury.

We finish and get ready to leave. The lady says - would you like to keep the float, I found it in a cupboard, and it would serve the dragons right. We thank the lady lots and lots, and scarper. A strap on float is safer than holding a float, and I am like hee, hee, hee - that felt naughty.

The Sick Note

Ok, here is where we are at. I work in an office of around 40 people. I would accept if they said that under their duty of care they would be concerned that even with no perfume or aftershave it would be difficult to guarantee my safety.

I would say - well here are the potential solutions
1. Use an air filter on the desk.
2. Put me into a smaller office and see if that environment can be controlled.
3. Let me work at home.

I do not accept whatsoever that you can't ask people not to spray themselves with perfume - it's not logical - you can ask them to not eat nuts if it's harm someone else. I do accept even with that I could be ill - it's a tricky one, because health matters over principle. Now, the other problem is in the background I am iller that I was 6 mnths ago, and am collapsing more regularly. So last night went to see GP, who said he was sorry I'd been told by another GP I'd be reinvestigated and then made no action. He told me I am most likely to lose my job. I am stuck as I know I may not be well enough to work, as I am collapsing more regularly - but believe that with some mobility aid help (walking seat with seat, etc kind of help), I can get to work. That if the environment did not make me ill - I would be ok on reduced hours.

Good things he said
1. We will test your cortisol levels.
2. We will do a tilt table test.
3. He did not flinch when I said my husband and I had to use wheelchairs in supermarket as I collapse regularly.
4. He accepted that I had had a relapse.
5. I can get an OT appointment.

V concerning things he said
1. He absolutely would not ask his staff not to wear perfume.
2. If he was anapyhlactically allergic to peanuts he would not ask his staff not to eat them (or vice versa for his staff).
3. You cannot be allergic to an airborne allergy.
4. Asking people to not wear perfume is NOT a reasonable adjustment and does not consider other people's rights.

I explained I knew of a child who attended a school where people did not bring in tuna sandwiches as it would give him anaphylaxis - he said, you don't want to know my opinion about that.
My speech was slurred and I was so tired - not v convincing that I am well enough to work, I asked him - am I fit enough, and he said I am giving you a sick note because you asked me to - I am signed off with 'falls, exhaustion, etc.' Seriously.

If I really am not able to work healthwise - ok, but not if it's a case of - well that sounds too tricky. I collapse about once a week, doing activities that I wouldn't do at work - like prolonged walking or standing.. I am fighting this as fast as I can. I believe instructions needed to be clarified in writing to remind people. Then action taken if they were ignored. My grievance hearing is 31st March.

Came out of room, went into corridor, and collapsed. Husband with me - dr not. Would have saved the whole trying to describe what they are like stuff. 'I'm asking you in case I spot a pattern.' V good Dr - the pattern is this - exhaustion, emotion and certain actions that affect my concentration. Dr told me I might need to accept the fact I am disabled. Um, yes I am - and much as you are a Dr you are not an expert on disability law. He did clarify it was just his opinion - an opinon he might have been better to keep in his head - that basically went - well I would not accommodate your disability, but you know, there there, this was a hard discussion wasn't it?

I do not know what to fight at the moment. Drs seem quite content on deciding what a disability adjustment is even before it is discussed - and I am now having to prove I am well enough to work at all. Please just stay at home - never mind the loss of income. Just don't try - there is no way round this.

My managers - 3 of them, plus a senior said - you are really really good at your job, we do not want to lose you - we believe we can accommodate you.

The flip side of this is - even with resting and accupuncture and graded activity - I am very exhausted. I'd like to have a family - I wouldn't want to do anything that puts that in jeapordy.

I spend a lot of time sharing intimate details with adults who are paid to be Helpers - so they haven't a clue what to do with someone who wants to fight and get better and do things - and they have no idea the effect they have with their -Oh it's just my opinion.

Eeny, meeny, miny, mo

This post is not meant to sound bitter. But if it sounds p*****d off then that's ok.



This cartoon sums up so much. Things I could do today

1. Sort out mess WTC left me in. I have their money, it's hard to calculate what I owe them especially when they send me two letters, same info, different financial outcome. Which calculation of yours would you like me to put into mine?

2. Phone hotel for a party we are all having and explain allergies, and sensitivity to strobe in disco just in case.

3. Phone cleaners again to say - well, the stairs were not cleaned with water, as you suggested, but pine cleaner again. That one was a bitter remark; they have not done that yet, it's just a knee jerk reaction from last time.

4. Phone equality and human rights people, and union rep, and access to work - and discuss potential impending action as I refuse to send sick lines, and I suspect, prepare to fight for job.

5. Phone nurse who said she would give us an appointment for nurse again, and ask when it is, as we think it's this week.

Number four is the priority. Now, I have had lots of time recently, but most of it was spent recovering from a relapse. I have ME, my concentration is often very poor, and I have learnt how to hide it. I want to tell all the doctors, etc, sometimes the effort it takes to have long, boring nonsensical conversations about what I need, and oh, yes it is complicated. I have files of stuff ready for each organisation I deal with. Get sick, and you get a free part time job called - file it, keep it, be prepared to write about it regularly. And have good phone skills.

I am not actually a good self advocate - by which I mean, I'd rather hide in a cave sometimes than confront people. I also have intermittent collapsing that is made worse by tiredness, and other triggers, and that just spices up the whole mix.

I want a life of NOT having to say guess who I am fighting now?

Next week, J and I go to see a GP to discuss why the last GP I saw said - your case is very interesting, I am going to talk to all the other doctors, and read all your files and see if we can do anything else - why are you collapsing like this. She left the surgery two weeks later, and left no note in my file to state her intentions. I had this from the asthma test guy - I will contact the allergy specialist to discuss your medications. So, to hear again - I will help, oh, no I won't - hurt.

Allergy, work and a plethora of advice and a grievance

Ok, it has taken till Feb to get OH appointment. The doctor was the one I saw in Sept. ALL the medical notes are missing. She almost said sorry. I took MIL in as witness. We discussed the number of times being sent home, etc, and she said - I will write and ask that you be in an environment where there is no perfume and aftershave. I will also suggest a phased return as you have relapsed.

Her report says she is concerned about me being able to work long term. Relapse aside - I could work part time in an environment where people do not wear perfume or aftershave, and I was kept away from a couple of other triggers - this is not impossible. Now, I get told, ok until the environment is made safe - you are coming off medical suspension, and now you are off sick. How, I asked the HR dept, am I to get a doctor to sign me off - the OH have said I am fit as long as the environment is changed and the return is phased. She said she would be interested to see what the GP wrote.

Spoke to ACAS who said - write back and say - I cannot provide sick notes as I am fit to work. So I did. Eek.

I spoke to a legal team and they said, raise a grievance. So I am. Eeek.

I had asked HR if I was in a wheelchair and they couldn't fix a ramp so I was sent home, would I need to send in sick lines, and they said - we will not answer that. Your case is being judged on its merits.I am doing all this in my pyjamas. I'm just a little lady. I had the phone put down on me, because I said - I am angry. Apparently, that is abuse.

I'm running out of chains of command.

Told ACAS, do you want a laugh? I said my allergy doctor had said - I think you should stay at home and be a housewife. I said, I had to tell all my principles I was taking them home in a bag, as I'd run out of fight after an hour of chat.

Actually, what she said was this - go home, and get pregnant. Potentially more positive than the nurse who said -'How will you cope if you have a baby!?', and yes, it is good to hear that if I was pregnant then it might help my immune system even if temporarily. Apparently, according to this nurse (the only disabled pre-pregnancy nurse I've heard of), I do not have God's right to ask people to not wear perfume, and I full of imaginary mummy boldness said - yes I do.

However, apparently three years of management can be reduced to this - oh, well, never mind, chain yourself to the sink, for goodness sake. No pressure of course, on a couple who would very much like children but do not hold a holy grail in fertility promises.

Thank you homeopathic hospital and acupuncture man. Five sessions with needles (cost £140) and I am no longer requiring 13 hours sleep. The homeopathic Dr said - I can hear this is such a struggle, I know it was hard for you even to get in today for this appointment, I will treat you in my allergy clinic, and I have seen multi sensitive people improve. Thank you everyone who made the wedding so much fun, and possible, and with wheelchair assistance when I was biting my hand to stop clunking over.

The best image that stays with me yet, is arriving at my sisters house, before Christmas and she is cleaning her toilet with scent free baby wipes, and drinking wine. Ingenious, and the best perfume free inventive adjustment I saw all that season.

They asked for it back : (.

Well WTC caught up with me - they want the money back. Darn. I was looking after it so nicely. And they sent a complicated letter that means that somehow I owe them even more money than that back. Well, how much will I miss all this when it stops - we are practically family now - could've set up a fab wee investment agreement. A kind of I can guard your cash if you like agreeement.

Allergy 3.

Phoned Human and Equality Rights people and there is no definition of what is a reasonable adjustment at work but if you disagree, go through the internal compliants procedure, and if not satisfied an employment tribunal. So, here is what has been happening. I had a further meeting with my manager, and went through again the adjustments I would like to try. I think I have done this five times now. It's taken three months to get the air freshener out of the toilet. The meetings are exhausting. Would I try moving desk - not till I see Occu Health first. Also, had to explain to my embarrassment that the open cupboards at one of the team sections smells of pine also makes me ill, and that actually where I am is not as bad as perfume plus pine furniture.

Then I walked back to my desk, to find that the men had sprayed body spray in the toilets, and I had to get sent home.More chat, more meetings. Now a poster in the toilets asking people to refrain from spraying perfume. Last week, a risk assesment manager comes to chat (where has he been - I've never seen him before!). He tells me - well we can't ask people not to wear perfume or aftershave. So I go through again what affect that is having. One hour later, I look at my work colleagues who look at me going sleepy, and they say - 'we can smell it.'

A cleaner had opened up a bottle of disinfectant. By the time I got out the room I was unable to walk properly. I was attended to by a first aider wearing strong perfume, and sent home in a taxi smelling of incense. I had a rash across my chest, and called NHS 24 who said - if it gets worse call an ambulance.So, major ME relapse, and then a very odd phone call. A senior manager explaining I am on full pay, but have been asked not to go to work until this is sorted as they have a duty of care to me, and want to make things better before I come back.My head was buzzing - I was like, ok, but I would like to talk to my union about it. I have slept about 13 hours every night since that last reaction, I felt like a bus had hit me.

Is there anyone, anyone at all out there who has been through anything like this? I feel isolated and scared. I see OH on tue - the original appt was in a place only accessible by car which would have cost loads in a taxi, and now is in a place I can get to by taxi that I can afford.

Eternity

I have been ill for about eighteen years. Sometimes I’ve lost count how long it is – and no matter that I’ve had half a lifetimes practice; it does not stop me waking, shocked every morning.

I lie there, and think – seriously, am I not better yet? An eternity of flu – an eternity of waking up thinking, I’m sure sleep is meant to be refreshing, and that it’s not normal to feel like several days and nights have passed without it. The singing of a nervous system that has who knows what wrong with it, sends a constant buzz around my ears and down to my fingertips. There are pressure points all around my skull, and my limbs, and my back, and my legs that all take turn to ache, or burn or just niggle away. Once they get massaged, I am astonished just how much pain there is in the depths of my muscles – all the time. Maybe today my head will hurt, or I will get muscle twitches after walking short distances, or muscle spasms in my hands after more strenuous activity. It’s winter now – so my teeth hurt a lot it seems to be a sinus thing, triggered by allergy, or infection or both. My head feels taken over – there is a solid lump of not me in there.

It’s like a grey metal cloud that lives at the front of my head. It makes me dizzy sometimes. It eats up the energy it takes to sit up, or stand up. I never stand without having to concentrate, and sometimes very hard just to keep my legs straight. Worst case scenario – once my speech slurs, and the wobblies hit, I hit the ground very fast, with eyes shut, ears open, but with a slip of time missing. I know I’m going to collapse just before it happens. Just. Sometimes at the point my legs melt. Then there is a blank bit, and then I am on the ground. That bloody ground – it knows how to catch you, but not very well. It’s like a stupid flat thing just rushing up to you, as your muscles do nothing, so you end up like a floppy girl sucked into gravity’s magnet.

Not the best for not alarming people. On the floor, is actually not too bad; that is if you excuse the firmness of concrete, or the nip ping of gravel in your knee.

I have a body clock that is screwed. My mood is tempered by whatever is going on in my immune system/hormones/energy now. It’s got its own pattern – if I get too low, chances are I’m knackered. If I get a bit high, and giggly; chances are I am knackered, and up for a round of increasing insomnia – known in ME land as – I’m wired to the moon tonight, and too tired to sleep, and yes it looks like I’m better, but actually my brain is acting like a kid on coffee – tomorrow you know there will be tears. And possibly a solid night requiring twelve hours sleep. Or a broken night. Or a long night followed by something like lunch, and then more sleep, and another day missing from the calendar.

I never ever ever feel well. Not free to walk, or run or dance, or not measure how much I’ve done well. Not actually no pain all day well.

I am shocked when I wake up. Is this not going to stop then? Yes; I had IBS, and now I don’t – progress, fab. Yes; I stopped having migraines after changing my diet for the third radical time. Yes; I used to be unable to work, and I’ve worked part time. But not once has the rabbit eating the middle of my brain with its eternal appetite stopped.

I was asked recently, before prayer for healing; what is it that bothers you about this the most.
I replied, that I hated not being myself. Me, well, would have been a disaster relief nurse who worked in war zones. Or a teacher (I had a place in college for four years held open; they really really wanted me). Or a manager full time. Or just me.

Not somebody who has to say – oh flickering lights; don’t mind me I’ll cover my eyes, so I don’t clunk over. I would eat everything – and not just once. I’d cook and write recipes, and be adventurous. Not; excuse me as I turn down many social occasions with increasing allergies.

Careful? F**k careful. I hate not being spontaneous to the point of actually even being able to run for a bus. I hate having to talk, and debate, and negotiate and consider. I fear being like the ill person in the media. They are the tiresome ones, the wheezers, the easily portayed. The moaners. They – oh do be careful with me – I might snap.

I hate having to say that – actually an astonishing amount of everyday life is too much. Too cold, too draining, too blocked off.

I would love to wake up, and have the luxury of saying – I can’t be a***ed going to the gym, when actually if I wanted to I could ceilidh myself into a stupor and it would not matter. It would not end up in – you’ll never guess what kind of relapse I had then, eh?