Working and severe asthma

[Becca91]

I have been desperately holding onto my job and have been very reluctant to make changes that make me seen as different.

I work as a nurse and I have changed jobs so that I'm not on the wards and it's less physically demanding although my position is fixed term ending in March.

I have severe refractory asthma and my consultant has told me that there is nothing more they can offer me currently. I'm still bouncing in and out of hospital with ICU admission and if I'm being perfectly honest I'm knackered both mentally and physically.

I am lucky enough to have an employment support worker who has suggested that I look at reducing my hours and shifting the balance of my life but this just feels horribly scary. She wants me to start collecting evidence for PIP.

What has others experience been of reducing hours at work and going through the process of claiming benefits. I'm terrified of the whole process if I'm honest

TIA

[Denae011]

Hi there I have the same type of asthma. I work 24 hours a week in nhs. I also get pip. You should maybe reduce ur work hours Also claim for pip you have nothing to lose and probably a lot to gain. I didn’t expect to get pip but I did.

[Becca91 in reply to Denae011]

Thanks Danae! How did you find the PIP process? Did they contact your consultant etc?

I really want to keep working and I want it to be sustainable for my health.

[Denae011 in reply to Becca91]

Hi there. I found the process ok. I just collected some evidence from my gp and I don’t know if they contacted consultant. I took my repeat prescription with me etc to the medical In the form they ask how ur illness affects you etc. They asked questions at the medical. I was nervous but it was ok. I had letters from hospital admissions and I sent letters from my consultations at out patients. I was advised to take someone with me which I did. You could contact citizens /welfare rights and they will advise you. You should go ahead and claim though.

[Smoggy1990Boggy]

Are you in a Union? Do you ever see Occupational Health? Due to the nature of your asthma you will be covered by the Equality Act 2010. I would contact Fightback and explain the situation you are in and whether they can help they have very high success rates in helping people. With things like PIP that are not means tested (doesn’t matter what savings you have) it is how the questions are answered that matter. You can claim PIP if you are working. Their number is 0161 672 7444. They have a facebook page, they do have a free helpline the number above Monday until Friday. Also on Facebook. They are based in Bury. They have a good reputation and rightly so I know a few people they have helped. Michelle Cardno is the founder.

[Becca91 in reply to Smoggy1990Boggy]

Yeah I have used my union before when I was being pulled through the sickness process and they were great. Occy health just admit that my condition is beyond them and they usually ask me what I want...and until now I've not suggested anything. I have been referred to occy health again by my manager and I'm looking at how I can make that meeting an opportunity to discuss options. I will definitely have a look at fight back thank you

[Spikedog66]

It sounds as if you having a very rough time of it so the stress of what's going on won't help your health at all. Apply for pip and get help to fill in forms, reduce your hours and make your life easier for you. I plodded on as a nurse in a busy environment for years and ended up very poorly and unable to workat the end. Honestly it's not worth it... be kind to yourself. Do a job you love but in the boundaries that are suitable for you and your health. 😊

[Becca91 in reply to Spikedog66]

Thank you! I really love my job and im hoping that they will extend my contract/make it permanent so I at least have some security...but then there will still have to be difficult conversations about what I can do. I'm having to apply for other jobs too just now and i cant apply for part time because I cant afford to just now. It's a vicious cycle and the government do not make it easy!

[Spikedog66 in reply to Becca91]

See what pip does for you and it might make your choices easier. What about 111 or community nursing or clinics for a job I know it's not nursing in a hospital which I guess that's where you are but maybe a better environment and you are still helping people and nursing but a different kind. It's difficult and frightening I know but nursing has emense scope and you may love the change you make too. Think of your health. 😊

[hilary39]

I'm so sorry to hear this. It's so hard to realize how much our lives can get bent out of shape by our ill health. I've had some reallllly low points over the past decade including one 8-10 month period where I was totally incapacitated by what turned out to be a lot of mold in the walls at my office (several of us were having breathing problems but it took them ages to fix it, so frustrating).

I started working from home just over two years ago in order to better take care of my health, among other reasons (we also moved to another country where I'm not fluent in the language! ) I went from a high-power busy enriching job to being in my pjs all day and it was a bit of an adjustment but my asthma has been wretched the past two years so the timing couldn't have been better.

I'm slowly climbing out of the asthma hole thanks to Xolair but now I have to deal with a whole other issue which is adrenal insufficiency I developed from taking too much prednisone.

All this is to say--it can be really hard to cut back, to earn less money, to curb our vision of our professional future etc. but health really is the only thing that matters and we are the only ones who can take care of ourselves.

I'm sorry again to hear how tiring and hard this has been on you--it's such an insult to injury to have to deal with vast amounts of paperwork, bureaucracy, proving our illness etc. when the reason we have to do it all in the first place is that we are too sick to function.

Has your doctor talked to you about biologics? They have been a lifesaver for me.

Good luck! Keep us posted.

[Amy2091]

Hi, I have severe eosinophilic asthma and work 30 hours (ignoring any overtime) a week in the nhs. Can I just ask how you got an employment support worker? Did you need to go via occy health? This seems really beneficial! Thankfully my job is very undemanding and I no longer do any clinical work. Would your management team support you with a job transfer? I understand that with the work you have put in to become a nurse that you wouldn't want to give that up entirely but there are many band 5 and above jobs that are essentially just an office job/manager role? If you're just on fixed term atm maybe look around now for something that is more suitable to you personally long term, I'm sure you will receive an excellent reference. How old are you if that isn't too personal? Is early retirement an option? If not do you really want to give everything up? Putting in a work life balance is brilliant - I put one in a few months ago and it has changed my life so much, they also have very little reasons where they can refuse someone, you do however need to be in your role for at least 26 weeks before you can apply so if you are changing jobs you may struggle. I'm sure unison can offer advice if you're a member, sometimes even if you're not.

Collecting evidence for pip sounds useful, especially if they will support you with your case. I've been debating applying for a blue badge and pip myself but I've never really opened up to anyone at work about how severe my asthma is even though the majority of my leave is taken to attend 3 consultant appointments at least every 4 weeks atm. I also have a very manic life outside of work with caring for a loved one so wasn't sure I'd be taken as seriously as I hoped I hate how much asthma can affect our daily lives and very few people seem to understand just how much which is why a lot of us try and keep it to ourselves where possible

[Becca91 in reply to Amy2091]

Hi Amy! I'm 28 so this feels scarily young to be thinking about reducing hours. I definitely want to keep working, in fact work really keeps me going as people are not focused on my asthma! I've never heard of a work life balance scheme...I wonder if the NHS has one?!

My employment support working is through my local MH trust (I have MH support due to the anxiety of not being able to work/living with asthma). When I said this week that I thought I might have to look at PIP I was stunned when she said 'oh its just taken you 2 years to realise this' I am very fearful of taking money away from others and worry that I 'dont really need it'. I have to say I didnt realise the amount of adjustments I've made to cope and it's not been fun to face but ultimately I want to have some quality of life and dont feel I have that now as I'm using A/L to cover apts and I'm not getting a proper rest. It's really hard and people really dont understand the impact of severe asthma X

[Amy2091 in reply to Becca91]

I completely relate! I am 28 too and I applied for my work life balance in the nhs. Search your intranet and print it off, that's all I did (HR could also send you one on request), I live in wales, not sure if it's much different in England? But it's really easy, you don't need to say why you have applied either, just write basically what you want, hours/shifts. They can only say no based on 1 in 6 reasons (and it's very rare - depending on how supportive your managers are) and you can also appeal their decision. It has to be accepted or declined (including appeal) within 3 months legally their end. The only downside is you need to be there 26 weeks before you can put one in but it's the best thing I have done! If anything it means you can manage appointments better around shifts etc.

I would defo go ahead with the pip, the worst they can do is say no, but others on here have done it and won so it must be worth it, and your anxiety issues will all contribute in your favour. I feel the same, I have supported my mam for years with other medical conditions and applying for her pip and tbh it is hard work! But it's worth it eventually. Start looking at the future, I'm not sure if you have a family of your own yet but if not take that into consideration for the future, do you really want to be running around am making yourself worse with rubbish shifts or choose ones that allow you some rest time?

You can also self refer to occy health, I've not used them myself but colleagues have and have said they are brilliant for support and they've sought advice regarding diabetes and minor shoulder injuries. Good luck!

[Philgn]

May seem a silly suggestion for you but, I couldn’t work indoors when I was at my worse or do anything manual, I got a job driving a tipper lorry and which was loaded for me, the hardest thing was getting up in the cab which I could manage, after 20 years I changed to driving a cab, work when your fit scenario. 76 years an asthmatic and still hanging in there

[Ayeup]

This subject is so relevant to my situation at the moment. I've gone from working full time to having to take partial retirement earlier than I anticipated due to severe eosinophilic asthma. Mentally it's a real challenge as I never asked for help before or admitted I was struggling. I'm waiting for Xolair and as the time goes on I'm struggling with even part time hours. I'm going to try and get PIP. I've never claimed anything before. I would say at 28 you need to be totally honest with yourself and then with others as to what you would be able to do work wise and claim PIP to support you in your work life balance. I feel for all on here who are struggling with work. It's very hard admitting you cant do what you want to. Good luck and I hope you get sorted 🤞

[Smoggy1990Boggy]

How are things now Becca?

[Becca91 in reply to Smoggy1990Boggy]

Hey how are you? I hope your managing to keep safe!

Things have all gone a bit weird hey with everything but I managed to get complete the PIP form with help from a welfare benefits team who were amazing and now I suppose it's just a case of waiting....I suspect things will be on hold now though.

Work wise I'm in a tricky position because my current contract ends at the end of June. I have applied for a new role in the same team and they have been very supportive and totally not fussed about my health/ the prospect of making reasonable adjustments so I will just have to see where that goes.

For now I'm working from home as I'm in the shielded group (like most of us here probably are) and occy health have said this might work in my favour if I can show I can work from it may be that we can discuss that as a reasonable adjustment later.

I think I'm definitely still fighting with myself over the fact that my life needs to change to sustain my health and that is a slow process but I will get there I'm sure!