AIBU to give up work due to poor health

[VelvetLady88]

My health has been deteriorating for around a year. I've had bloods & head MRI & CT scans done but they didn't show anything wrong. I have a neurology appointment in 2027 so I'm not expecting to get a diagnosis until then.
I work in healthcare & have had to stop clinical practice. I now support my team in an admin role & have reduced my hours but I still find this causes me pain & extreme fatigue. I was advised by my GP to stop driving & inform the DVLA who have revoked my licence & I now have a 2hr commute each way on public transport.
My GP won't sign me off sick anymore as it didn't improve my symptoms & said it's up to me to work with managers for more reasonable adjustments to be put in place but I don't know what else can be done & Occupational Health couldn't suggest anything the last time I was there.
My GP referred me to Social Work & my Social Worker suggested applying for disability benefits. She has also arranged for carers who give me a hand to shower & make our dinner & sometimes feed me dinner on a bad day & arranged a cleaner. I could have a carer in to help me get ready in the morning but the care agency can't start til 7am & I need to be out the house by then to go to work. My work can't change my start time as I need to be in for a meeting & to supervise junior staff.
I feel if I give up work it would conserve the little energy & hand movement I have left so I can spend time with my family. I could also use my wheelchair more to conserve my energy. My symptoms are worse on my work days. I don't normally need help to eat my dinner on the days I don't work.However, I worry about the loss of structure in my day & week & how I will manage to get another job when I recover. I work in a supportive team but I feel frustrated I can no longer do my clinical role & guilty when I see my team stressed but I'm not allowed to help them. I was offered redeployment to a different team but the departments weren't any closer to home so I decided to stay in original team as they know me & are good at doing small things like making me a coffee & opening packaging at lunch. I would miss their chat & banter if I leave. I don't know what to do for the best.

I had to give up work due to ill health several years ago and worked in the NHS in what sounds like a very similar role to yourself.
Giving up work is hard but if it will benefit your life then this is what you should do. I did ‘mourn’ my old job but have now come to terms with being disabled. I get full PIP which keeps me going. You will find things to fill your day either in the paid or voluntary sector.
You need to get OH to say you are not able to fulfill your job role and get retirement on medical grounds. Hopefully your GP will be a bit more supportive of this.
I would not and could not wait till 2027 to see a neurologist and personally I would find the money from somewhere to go for an initial consultation privately, generally this costs around £300 and then once on their books you can be referrred back to the NHS by them if you need follow up. You really need a diagnosis for your own sanity and to know where things are going from here. Reach out to your professional body about any advice or help they can give you.
Good luck

If you are getting cater support you will be entitled to Pip.

You need to leave work or at least reduce your hours considerably.

Thanks for the replies. I can't get retirement until I get a diagnosis & even then I was told it will be difficult to get retirement in my 30s unless I get a palliative diagnosis. Money is very tight since I've dropped my hours so.going private isn't an option just now.

Pip isn’t early retirement. It’s a disability benefit. And you don’t need a diagnosis.

It must be very hard for you being so unwell so young. You simply cannot wait until 2027 for a diagnosis. You clearly have a significant illness and you may be able to be treated for it and at the very least get the diagnosis you need. Please talk to your GP about needing an urgent referral or simply go private. Borrow money if you have to- it could help financially in the long run if you are able to qualify for illness benefits. I hope things work out for you.

If your neurology appointment is at your trust they can usually expedite it via occupational health if it is impacting your ability to work, to hopefully get you some answers sooner.

What diagnosis have you come up with yourself. I know medics should not try and diagnose themselves but you mush have some thoughts? I have hypermobile Ehlers Danlos Syndrome which gives me severe pain in my back and extreme fatigue. This does not show up on any scans or blood tests and is a clinical diagnosis. My spine is falling to pieces now due to the lack of normal collagen and now imaging is very abnormal but it wasn’t for years. I retired when I was 43 but had been off sick for two years prior to this.
It took me 30 years to get a diagnosis but now things should run more quickly. Can you pull in any favours? Get on your colleagues to talk to the neurologist directly and get seen asap. This must be awful for you. If you are a doctor there are hardship funds that give money for specific things and getting a diagnosis is the most important thing now.
Sending you virtual hugs

I work in Learning Disabilities & don't know anyone that works in Neurology. I thought it might be MND or MS but the scans were clear.

Don't resign, look at the ill health retirement route was the advice my union rep gave me. I was retired under tier 2 of the nhs ill health pension scheme in my 30s (it does happen but obviously harder to get) but maybe tier one would be easier to get (I seem to remember you can be moved up to tier 2 if you had more evidence).
I was signed off sick, then dismissed on ill health grounds (this makes it easier to get benefits as its proof that your unfit to work). At the same time I applied for PIP and esa. Your GP is not being helpful, could you see someone else?
Before you do anything speak to your union, I was with the RCN and they were really great, they even gave me a grant to pay for a wheelchair and cover two months bills which was such a welcome surprise.
Your right the hardest thing for me has been the loss of my career, routine and loosing the social aspects of working. However if it comes to a point where the good aspects are less than the detrimental aspects and you can no longer do your job it may be time to think about your options.

Can you talk to one of your doctors in the unit? They must know you are ill. You may find that they help you out and get a friendly neurologist to see you. I hate asking people for help but in your position I would keep asking someone to help me until someone did!!!!
Also have you gone through ‘right to chose’ about the appointment. You may be able to go to a different hospital within the same or a different trust.

Hello I too am in this situation can I ask you about finances? I get PIP in the form of a motability car and £441 per month. What other benefits can be claimed if I retire through Ill health?