Severe episodic cluster headaches - workplace challenges — Scope | Disability forum
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Severe episodic cluster headaches - workplace challenges

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Jxrdxn_N
Jxrdxn_N Community member Posts: 4 Listener
edited March 23 in Work and employment
I’ve recently been diagnosed with severe episodic cluster headaches. My employer will do anything apart from accept the reasonable adjustment requested by my GP. I worked a 9pm-8am shift Thursday-Sunday. These have been my hours since January 2023, when I applied for the job it was for the night shift position. I am unclear on what I can and should do going forward. Rumour is that if I keep pressing for an adjustment they will move my shifts to another store over an hour away. I cannot travel as I can’t drive, they pay below the median living wage for my county and most likely won’t pay for travel expenses as it was per my request to be moved onto days and I cannot afford it, I fell into rent arrears last month and will only fall more if I can’t get this sorted. What can I do? My disability is classed as significant on my NHS records but highlighting that hasn’t done me any favors. 

I’m losing hours and money and I don’t know where to go or what to do. I’m completely lost here. I’m consistently missing nearly 50% of my hours per month due to my condition, the company have lost faith in me completely where as this time last year i was putting in up to 260 hours a month (I’m contracted 160). Everything just isn’t going my way. 

Comments

  • Bydand
    Bydand Community member Posts: 73 Courageous
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    Jxrdxn_N said:
    I’ve recently been diagnosed with severe episodic cluster headaches. My employer will do anything apart from accept the reasonable adjustment requested by my GP. I worked a 9pm-8am shift Thursday-Sunday. These have been my hours since January 2023, when I applied for the job it was for the night shift position. I am unclear on what I can and should do going forward. Rumour is that if I keep pressing for an adjustment they will move my shifts to another store over an hour away. I cannot travel as I can’t drive, they pay below the median living wage for my county and most likely won’t pay for travel expenses as it was per my request to be moved onto days and I cannot afford it, I fell into rent arrears last month and will only fall more if I can’t get this sorted. What can I do? My disability is classed as significant on my NHS records but highlighting that hasn’t done me any favors. 

    I’m losing hours and money and I don’t know where to go or what to do. I’m completely lost here. I’m consistently missing nearly 50% of my hours per month due to my condition, the company have lost faith in me completely where as this time last year i was putting in up to 260 hours a month (I’m contracted 160). Everything just isn’t going my way. 
    Hi, sorry to hear about the problems you are facing, hopefully folks on here will be able to offer advice that helps.

    Not sure what employment sector you are in but my first thought is Does your employer have an HR dept, and are you in a union.


  • michael57
    michael57 Community member Posts: 213 Pioneering
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    hi i suffered from cluster headaches for 40 odd years back in the day it was trial and error on the treatments for it the best treatment for mine was the imigran injections of course you get the funny side effects but working on the farm you just get on with it i was then seen by a leading cluster headache specialist who put me on calcium channel blockers daily and i have to say they worked very well you could still feel the headache starting but then it would drift away a few slipped through but they dont call it the brainy headache for nothing good luck in your journey  
  • Rosie_Scope
    Rosie_Scope Posts: 2,213 Scope online community team
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    Hi @Jxrdxn_N, sorry to hear you're having trouble at work after your diagnosis, it doesn't sound easy. Have you had any contact with ACAS? They might be able to help advise you on reasonable adjustments and where you stand on your employment rights. Could be worth looking into if you haven't already :)
    Rosie (she/her)

    Online Community Coordinator @ Scope

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  • Jxrdxn_N
    Jxrdxn_N Community member Posts: 4 Listener
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    Thank you Rosie, someone else recommended it to me aswell so I will be contacting them on Monday when my weekend shifts end. 
  • Jxrdxn_N
    Jxrdxn_N Community member Posts: 4 Listener
    Options
    Bydand said:
    Jxrdxn_N said:
    I’ve recently been diagnosed with severe episodic cluster headaches. My employer will do anything apart from accept the reasonable adjustment requested by my GP. I worked a 9pm-8am shift Thursday-Sunday. These have been my hours since January 2023, when I applied for the job it was for the night shift position. I am unclear on what I can and should do going forward. Rumour is that if I keep pressing for an adjustment they will move my shifts to another store over an hour away. I cannot travel as I can’t drive, they pay below the median living wage for my county and most likely won’t pay for travel expenses as it was per my request to be moved onto days and I cannot afford it, I fell into rent arrears last month and will only fall more if I can’t get this sorted. What can I do? My disability is classed as significant on my NHS records but highlighting that hasn’t done me any favors. 

    I’m losing hours and money and I don’t know where to go or what to do. I’m completely lost here. I’m consistently missing nearly 50% of my hours per month due to my condition, the company have lost faith in me completely where as this time last year i was putting in up to 260 hours a month (I’m contracted 160). Everything just isn’t going my way. 
    Hi, sorry to hear about the problems you are facing, hopefully folks on here will be able to offer advice that helps.

    Not sure what employment sector you are in but my first thought is Does your employer have an HR dept, and are you in a union.


    Bydand said:
    Jxrdxn_N said:
    I’ve recently been diagnosed with severe episodic cluster headaches. My employer will do anything apart from accept the reasonable adjustment requested by my GP. I worked a 9pm-8am shift Thursday-Sunday. These have been my hours since January 2023, when I applied for the job it was for the night shift position. I am unclear on what I can and should do going forward. Rumour is that if I keep pressing for an adjustment they will move my shifts to another store over an hour away. I cannot travel as I can’t drive, they pay below the median living wage for my county and most likely won’t pay for travel expenses as it was per my request to be moved onto days and I cannot afford it, I fell into rent arrears last month and will only fall more if I can’t get this sorted. What can I do? My disability is classed as significant on my NHS records but highlighting that hasn’t done me any favors. 

    I’m losing hours and money and I don’t know where to go or what to do. I’m completely lost here. I’m consistently missing nearly 50% of my hours per month due to my condition, the company have lost faith in me completely where as this time last year i was putting in up to 260 hours a month (I’m contracted 160). Everything just isn’t going my way. 
    Hi, sorry to hear about the problems you are facing, hopefully folks on here will be able to offer advice that helps.

    Not sure what employment sector you are in but my first thought is Does your employer have an HR dept, and are you in a union.


    HI thanks for the response, I think we have a HR but management have never mentioned them or how to contact them. Since I posted my situation on the forum it’s come to my attention that another night worker has been moved onto the day shift instead of me. So HR will need to be found and contacted also. My manager hasn’t been off for a few days so I’m waiting for her return to work.
  • Bydand
    Bydand Community member Posts: 73 Courageous
    Options
    Jxrdxn_N said:
    Bydand said:
    Jxrdxn_N said:
    I’ve recently been diagnosed with severe episodic cluster headaches. My employer will do anything apart from accept the reasonable adjustment requested by my GP. I worked a 9pm-8am shift Thursday-Sunday. These have been my hours since January 2023, when I applied for the job it was for the night shift position. I am unclear on what I can and should do going forward. Rumour is that if I keep pressing for an adjustment they will move my shifts to another store over an hour away. I cannot travel as I can’t drive, they pay below the median living wage for my county and most likely won’t pay for travel expenses as it was per my request to be moved onto days and I cannot afford it, I fell into rent arrears last month and will only fall more if I can’t get this sorted. What can I do? My disability is classed as significant on my NHS records but highlighting that hasn’t done me any favors. 

    I’m losing hours and money and I don’t know where to go or what to do. I’m completely lost here. I’m consistently missing nearly 50% of my hours per month due to my condition, the company have lost faith in me completely where as this time last year i was putting in up to 260 hours a month (I’m contracted 160). Everything just isn’t going my way. 
    Hi, sorry to hear about the problems you are facing, hopefully folks on here will be able to offer advice that helps.

    Not sure what employment sector you are in but my first thought is Does your employer have an HR dept, and are you in a union.


    Bydand said:
    Jxrdxn_N said:
    I’ve recently been diagnosed with severe episodic cluster headaches. My employer will do anything apart from accept the reasonable adjustment requested by my GP. I worked a 9pm-8am shift Thursday-Sunday. These have been my hours since January 2023, when I applied for the job it was for the night shift position. I am unclear on what I can and should do going forward. Rumour is that if I keep pressing for an adjustment they will move my shifts to another store over an hour away. I cannot travel as I can’t drive, they pay below the median living wage for my county and most likely won’t pay for travel expenses as it was per my request to be moved onto days and I cannot afford it, I fell into rent arrears last month and will only fall more if I can’t get this sorted. What can I do? My disability is classed as significant on my NHS records but highlighting that hasn’t done me any favors. 

    I’m losing hours and money and I don’t know where to go or what to do. I’m completely lost here. I’m consistently missing nearly 50% of my hours per month due to my condition, the company have lost faith in me completely where as this time last year i was putting in up to 260 hours a month (I’m contracted 160). Everything just isn’t going my way. 
    Hi, sorry to hear about the problems you are facing, hopefully folks on here will be able to offer advice that helps.

    Not sure what employment sector you are in but my first thought is Does your employer have an HR dept, and are you in a union.


    HI thanks for the response, I think we have a HR but management have never mentioned them or how to contact them. Since I posted my situation on the forum it’s come to my attention that another night worker has been moved onto the day shift instead of me. So HR will need to be found and contacted also. My manager hasn’t been off for a few days so I’m waiting for her return to work.
    Hi again, if your organisation is big enough to have a dedicated HR, then they should also have access to an Occupational health provider. Your GPs recommendation really means nothing at this point, however would be used as evidence as part of the OH referral.

    Dont make it personal between yourself and your manager, but you need to be proactive at this stage. It can be easy to take things very personally which is why it’s important that you make sure all policies are being followed and a process has been started officially which works to everyone’s benefit.

    I would as a matter of priority contact HR, explain the situation and ask to be referred to OH due to the difficulties you have been having medically and how this has affected you.

    once under OH then everything should be recorded and the decision to a large extent is taken out of the control of others. The recording part is very important as it gives you protection from others perhaps misrepresenting the situation and provides evidence of how any medical disability affects you.

    The role of OH is to mediate between you and the employer and their recommendations are usually followed, this would include using reasonable adjustments and what that may consist of and for how long. It may well be over a period of time and will be reviewed.

    you have to be aware though that they also represent the employers interest and it is not always possible for an employer to accept reasonable adjustment recommendations.


  • Jxrdxn_N
    Jxrdxn_N Community member Posts: 4 Listener
    Options
    Bydand said:
    Jxrdxn_N said:
    Bydand said:
    Jxrdxn_N said:
    I’ve recently been diagnosed with severe episodic cluster headaches. My employer will do anything apart from accept the reasonable adjustment requested by my GP. I worked a 9pm-8am shift Thursday-Sunday. These have been my hours since January 2023, when I applied for the job it was for the night shift position. I am unclear on what I can and should do going forward. Rumour is that if I keep pressing for an adjustment they will move my shifts to another store over an hour away. I cannot travel as I can’t drive, they pay below the median living wage for my county and most likely won’t pay for travel expenses as it was per my request to be moved onto days and I cannot afford it, I fell into rent arrears last month and will only fall more if I can’t get this sorted. What can I do? My disability is classed as significant on my NHS records but highlighting that hasn’t done me any favors. 

    I’m losing hours and money and I don’t know where to go or what to do. I’m completely lost here. I’m consistently missing nearly 50% of my hours per month due to my condition, the company have lost faith in me completely where as this time last year i was putting in up to 260 hours a month (I’m contracted 160). Everything just isn’t going my way. 
    Hi, sorry to hear about the problems you are facing, hopefully folks on here will be able to offer advice that helps.

    Not sure what employment sector you are in but my first thought is Does your employer have an HR dept, and are you in a union.


    Bydand said:
    Jxrdxn_N said:
    I’ve recently been diagnosed with severe episodic cluster headaches. My employer will do anything apart from accept the reasonable adjustment requested by my GP. I worked a 9pm-8am shift Thursday-Sunday. These have been my hours since January 2023, when I applied for the job it was for the night shift position. I am unclear on what I can and should do going forward. Rumour is that if I keep pressing for an adjustment they will move my shifts to another store over an hour away. I cannot travel as I can’t drive, they pay below the median living wage for my county and most likely won’t pay for travel expenses as it was per my request to be moved onto days and I cannot afford it, I fell into rent arrears last month and will only fall more if I can’t get this sorted. What can I do? My disability is classed as significant on my NHS records but highlighting that hasn’t done me any favors. 

    I’m losing hours and money and I don’t know where to go or what to do. I’m completely lost here. I’m consistently missing nearly 50% of my hours per month due to my condition, the company have lost faith in me completely where as this time last year i was putting in up to 260 hours a month (I’m contracted 160). Everything just isn’t going my way. 
    Hi, sorry to hear about the problems you are facing, hopefully folks on here will be able to offer advice that helps.

    Not sure what employment sector you are in but my first thought is Does your employer have an HR dept, and are you in a union.


    HI thanks for the response, I think we have a HR but management have never mentioned them or how to contact them. Since I posted my situation on the forum it’s come to my attention that another night worker has been moved onto the day shift instead of me. So HR will need to be found and contacted also. My manager hasn’t been off for a few days so I’m waiting for her return to work.
    Hi again, if your organisation is big enough to have a dedicated HR, then they should also have access to an Occupational health provider. Your GPs recommendation really means nothing at this point, however would be used as evidence as part of the OH referral.

    Dont make it personal between yourself and your manager, but you need to be proactive at this stage. It can be easy to take things very personally which is why it’s important that you make sure all policies are being followed and a process has been started officially which works to everyone’s benefit.

    I would as a matter of priority contact HR, explain the situation and ask to be referred to OH due to the difficulties you have been having medically and how this has affected you.

    once under OH then everything should be recorded and the decision to a large extent is taken out of the control of others. The recording part is very important as it gives you protection from others perhaps misrepresenting the situation and provides evidence of how any medical disability affects you.

    The role of OH is to mediate between you and the employer and their recommendations are usually followed, this would include using reasonable adjustments and what that may consist of and for how long. It may well be over a period of time and will be reviewed.

    you have to be aware though that they also represent the employers interest and it is not always possible for an employer to accept reasonable adjustment recommendations.


    Wow that’s an amazing amount of information I wasn’t aware of. Thank you I’ll do just that. I am aware that the adjustment had to be reasonable, I was moved onto the late evenings due to having signed a contract for night shift, and was contempt with it for a while but after finding out that the new hire night shift supervisor has been moved onto a 9am-3pm shift pattern, I no longer see that change as reasonable as it was also the managers decision. I feel I am being discriminated against.

    Its only word of mouth but one of the day shift supervisors has been moved off his 7am-3pm shift pattern to accommodate me because I’m “falling off” which I cannot help due to the medical condition. None of these things have been told to me by management and I seem to be the only employee who wasn’t aware of any of this until 48 hours ago. 

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