Have ET, can I claim benefits

I have ET, was wondering can I claim pip or any other benefits. I do work in a supermarket 20 hours a week but I am finding it a bit of struggle to manage home life and the job cos of the chronic fatigue, feeling very shaky, visual problems and generally not feeling right. I have been given a first written warning at work cos of my absence and feeling quiet depressed that they don't understand my condition and how it affect me. Any advise would be appreciated.

11 Replies

  • That's absolutely terrible of your employer. Your doctor needs to write a letter to them they obviously don't know the symptoms of your blood disorder!

    Your employer has a duty of care to meet your needs!!

    My husband has just found out he is exempt from perscriptions.

    We've sent off for his certificate of exemption.

    His got polycthamenia jak2 positive.

    Also pv and ET are covered by the critical illness.

    We are in rhe process of claiming on our critical illness insurance.

    I'm not sure about any other benefit entitlements.

    Hope you get answers soon.

  • Thanks for the reply, that's a good idea about getting doctor to write a letter, I will do that. I have had occupational health at work, in her report she said my absences are related to the medication I take, and they are unavoidable. I'm on 1500 mg hydroxicarbimide daily. I have just had a operation and been off for 3 weeks, think I went back to early but with my sickness record felt I had to. Don't get me wrong some days I feel fine but most of the time I do struggle, No 2 days are the same.

  • It's absolutely shocking the way employers that employees.

    My husband should be going on hydroxy but he's working away working 12 hrs a day battling fatigue but can't get the right time to start this drug!

    We hoping our critical illness cover policy pays out so he can take time off if needed. He's very worried about side effects.

    How long have you been on hydroxy for?

    I read taking it at night helps to get rid of the fatigue!

    I'm actually on the sick my self I had a massive blood clot in Turkey and flown home with it.

    I'm stressing about my job it should be the last thing on my mind I work morning only in a primary school.

    This is my third blood clot I'm now on warfrin for life!

    I've got factor 5 leiden clotting abnormality.

    We both falling to bits but hey ho we have to stay positive!

    Your gp needs to write to your employer that's for sure!!

    Take care


  • I been on it for 2 year. I take them just before bed time. Not had many side effect felt a bit sick to start with and the tiredness and having a low immune system. Its not fun having a condition which you look quiet health but inside your falling apart. I no the feeling abiut falling bits, and I no you no how I feel to.

  • Hi

    As Tracey said your employer has a duty of care, you have protection rights under the disability act, so things like dismissals, redundancy etc, or even job appointment decisions can not be made based on the fact you have a medical condition.

    It does sound like your employer has acted unfairly, it is important however that you do keep them fully informed about your condition etc.

    Claiming benefits is down to everyones individual circumstances and everyones case is judged on its own merits. My understanding, althought someone may correct me, is that you can only fast track disability benefits if the cancer is considered terminal.

    For myself my employer is great, i can work at home if needs be, they are always asking how i am, and if there is anything that can be done. Obviously things like home working arent always appropriate, it could be that working hours could be adjusted to help you - if you have some good days and some bad could you extend your hours on a good day to make up for those you cant do on a bad day

    Or even moving to part time - it may be that if you have to move to part time work as a result of your condition some benefits may be available - im sure on one of the government website there is some sort of clculator that tells you what you could possibly claim for.

    I do beleive that claiming disability benefits is harder now days, unfortunately this is probably down to the number of people who have claimed over the years who clearly can work.

    I think when a claim is assesed now its look at on the basis of what CAN YOU DO, rather than what 'CANT YOU DO'..if that makes sense.

    Hope things start to pick up for you...working through a condition is awful, i totally know what you mean about going back to early - been there myself as you dont want to be seen to be an illness problem.


  • I agree with Paul ( I always seem to lol )

    The assessment is based not necessarily on the actual disease you have but on how that disease affects you in comparison to an otherwise healthy person of the same age .

    Nearly everyone now seems to have to go to tribunal ( have experience because of my sons life limiting condition) .

    Your employers are a disgrace and perhaps you would feel a lot better not working for them . You should certainly be able to claim ESA . The doctors letter is a good idea because if you have to leave the DWP will know you haven't made yourself intentionally unemployed .

    Hope this helps a bit and take care .

    Helen x

  • In a word, yes.

    I had to stop working nearly 2 years ago as I was having a lot of time off due to being very symptomatic and basically being sick as a dog. My employer had been helpful up to that point: reducing my hours slightly, changing my role and being understanding about time off etc. but I was still hourly paid and hence not earning enough to pay the rent. I could also tell that work were not really happy with the situation and it was stressing me out which wasn't helping.

    As MPN's are a chronic disease (and now especially as they are classed as Neoplasm's) you should have no problem with being put on ESA. Initially you might have to get a certificate from the GP (but your Consultant might be able to help here - not sure check with them), I had to for the first 6 months - always fun: GP: What is wrong, Me: Still got me incurable disease - honestly, every time! After that I was put onto the Support Group whereby you don't need to get certificates or attend interviews etc and you receive slightly more money - again this is due to the chronic nature of our condition. I did have some help before I started claiming as I was put onto an independent Benefits Advisor at the hospital and strongly suggest doing this first - or going to Citizens Advice.

    Have a look here, not much in-depth information but might be a start:


    Also, could I suggest contacting your HR people, maybe at a higher level than the store you work at, as they will be ripe for you hitting them with a tribunal if they sack you due to you being ill.

    All the best,


  • Hi sjdard, , unfortunately the responses regarding PIP are correct. It is an extremely hard benefit to successfully apply for as opposed to the old DLA. And for good reason, to drastically reduce the benefit bill by billions (less the amount paid to likes of ATOS and Capita for 'delivering' the savings). As others say you have to evidence how your condition affects your daily living over about 10 activities and the help you might need and the type of help which include:

    Preparing Food, Washing and Bathing, Managing Toilet Needs, Dressing/Undressing, Engaging with Other People Face to Face. These are Care elements and there a few questions to do with Mobility. Some claim one or the other, some both. Each question has a number of descriptors and having a point score. You score points for how much help you need against these.

    If you score 8 points you qualify for Standard Care (about £22 per week) . If you score 12 points you qualify for the Enhanced Care (about £82 per week).

    ESA is easier to claim for but again as someone said a letter from GP or Consultant helps your chances of being put into the Support Group immediately. The DWP seem to hold great store in GP support in my experience.

    If considering either benefit claim my advice (FREE !!) is to pay a modest subscription to on line site 'Benefits and Work' who have walk through guides, advice and pointers which take some of the pressure off being faced with the form and increase your chances of success many fold. .

    Take any advice regarding your employer and hopefully you will get some sort of result there as they are treating you shoddily.

    Good Luck to you and anyone else considering doing battle with the DWP !! 😱😱😱

  • Thank you for your comment, it has help me.

    With regards to work, I do feel hard done by, I had 4 sickness in 26 weeks. I had to have my gall bladder removed, another time was connected to, when I was taken to hospital from work in an ambulance. The other two were cold/flu related. In my disaplinery in which I was given my first written warning, it was explained. There are 3 stages to dismissal. I'm on stages 2 now, I am only allowed 2 sickness period in the 26 weeks. I have had one already as I had to have another operation, next time I'm off it will go again to a disaplinery, where I will get a second written warning, then I'm only allowed 1 sickness period in 26 week. After that it's dismissal. I am really worried about this, as it the season for virus and colds are coming up, as my immune system is comparmised and I work on a busy supermarket check out and likely to catch somethinG I am a member of the gmb and I'm sure they will advise me. I did have an occupational health assessment and she did say due to the medication I take my immune system is comparmised and sickness will be unavoidable. So I don't know where I stand with this. I'm feeling very vulnerable and don't know what to do. i try my best to keep going but there are time I feel unwell it hard, I feel all I am is a bum on a seat and not a person. Don't get me wrong I no my sickness impacks on the company but I have a genuine condition that can effect me on a daily basis.

    Any advise much appreciated.

  • Morning

    Does the business have a HR department? If its one of the bigger chains, tesco, morrisons etc etc they will have and i would ask for a meeting with them, explain you condition to them and im sure they will do what they can to help.


  • Hi.I have been on DLA and mobility allowance for 13 years due to arthritis in both hands and feet reducing my ability to doing things like cooking and walking . I was recently invited to move to PIP and despite being even more incapacitated than my original assessment - I have had both allowances stopped. I have severe fatigue, neuropathy, B12 deficiency. I have had 5 surgeries on my hands and surgery on my spine. my feet hurt just sitting never mind walking. I have ET which was discoverd after a TIA . I have recently finished work because I could no longer cope with the pain or the tiredness. my illnesses and side effects do not count towards PIP and I have to return my car. I am now effectively trapped in my home. I'm too young to claim state pension and because I have a small pension of 180 pounds per month I cannot claim Esa. I'm devastated. it's not enough to have a disease that's debilitating. the DWP have to make your life worse.

    good luck to anyone trying to deal with them.


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