back from hospital

[Wumm]

hello everyone,

I hope you are all as well as you can be. I would like some advice please if anyone can help.

My medical history is fibromyalgia, endometriosis stage 4, IBS, depression and anxiety (survivor of trauma and abuse currently in therapy), chronic hep B (asymptomatic)

1. I have been in hospital for 4 days and just got home due to endometriosis flare. They reckon I need surgery for hydrosalpinx, endometrioma and deep endometriosis together with a colorectal surgeon. I was only provided with pain relief meds that I normally take as well as oramorph in hospital. They won’t send me home with any morphine just my normal pain meds of codeine amitryptylime nefopam paracetamol.

2. I also suffer with fibromyalgia muscle stiffness and recently was told my left side was weaker than right although not related to stroke or anything. They think it’s just the fibromyalgia.

3. I am now going to see the pain clinic for chronic pain. I use a crutch and just got my disabled badge. Is there anything I should be asking the pain clinic for please? My main problem is debilitating pain from my conditions. The meds don’t seem to do anything for me now. Also I struggle to get around and have to stick to one floor in the house. I’m in a private rent, can I get support with things like stool, grab rails etc in private rent? If yes who do I contact for this please?

4. I have also applied for a review of my pip so I can get enhanced rate. Citizens advice helped with filling the form but I haven’t heard anything back from them yet. I am currently unemployed and really tight for money, does anyone know how soon they will respond please? And what can I expect from the process of review? I currently get daily living standard rate only.

5. As my family can’t afford for me not to work even with the benefits I currently get. I am wanting to go back to work. I managed to secure a home based cqc job. I am having a welcome call next week and just wondering if there’s anything I should be asking them in terms of reasonable adjustments please? Also has anyone had any experience of access to work with home based working please? What did they offer and how please?

Thank you for your time and I look forward to reading your replies.

[KittyTherapy]

Hi, I can't answer all your questions but re. The grab rails/ other equipment - I wonder if a referral to occupational therapy would be helpful, I know that they can order things like this for patients and they may even be able to give practical advice about returning to work. With reasonable adjustments- I work a mix of patient facing and admin duties so for me one of my adjustments was just flexibility in my duties, hybrid working, I was also able to get an amendment to the absence trigger points (increase the margin before triggering absence targets/formalities) and flexible start/end times (so long as i work my hrs i can flex when i start/finish). Could also ask for permission to take more mini breaks. It definitely helps to come prepared with some suggestions when you have your occupational health appt x

[Wumm in reply to KittyTherapy]

Hello Kittytherapy,

Thank you very much for your advice. I did think I may need to go through occupational therapy, I have asked my GP for a referral but they haven’t done anything the two times I asked. Is there another way you know off say self referral?

Yes your suggestions for reasonable adjustments are quite good thank you. My proposed new job will be full remote so I’m lucky in that regards. I think flexible start/finish times and breaks will def help me.

Thank you once again for your reply x

[KittyTherapy in reply to Wumm]

Hi,

Some occupational therapy teams may accept self referrals but each team is different. Might be worth just googling where your local team is and seeing if they have any advice online about the referrals process. Other than that I would say go back to the GP again and don't let them fob you off, I know it can be uncomfortable but I find the more direct I am the better. Clearly say you want a referral and give reasons why, ask why they are denying you this/ what their rationale is and ask that they record/ document their decision to deny you. Is there a friend/ relative that can accompany you to your GP appt? That can help too. If they still wont refer you then i would write a complaint (this is why proper documentation is needed) and ask for a second opinion. Good luck!

[Wumm in reply to KittyTherapy]

Thank you Kittytherapy, my husband just googled and we found that we could self referral to the occupational assessors with our local council so he’s done the referral. It’s just going to take a long time before they get to us but at least that’s one thing off our list. Thank you so much xx

[KittyTherapy in reply to Wumm]

I just remembered i think my colleague at work has been through access to work and they were able to provide equipment (for both in the office and when working from home), they've issued her with an amazing chair which I think had massage and heated features (she has chronic fatigue syndrome) and also an adjustable desk which moved up/down. Also issued her with specialist cushions and there may be other things but I can't recall fully x

[Wumm in reply to KittyTherapy]

That’s great thank you very much ❤️ xx