New Diagnosis & Treatment - reportable as change?

Hello,

Wonder if anyone is able to kindly give me some advice on this? Any help much appreciated as I've been worrying myself silly about this. . .

So, I've recently had my PIP review forms to complete and have sent them back (this is my second review since going from DLA to PIP). This has been stressful, as I'm sure most here will understand, what with the worry about the process/outcome and all the dwelling on my problems to fill this in. I have an anxiety disorder and this process has really ramped up a lot of nagging, persistent worry for me - so am not sure if I am worrying excessively about this issue.

I mentioned on the form that I started CPAP therapy for sleep disorder(s) in Summer 2019. This is in ADDITION to my two main conditions that I receive PIP/ESA for - M.E./CFS (at the more severe end, where it affects my mobility, etc and I am basically housebound with it) and an anxiety disorder.

Basically, I am always thinking of ways to try and improve my health/situation as I am keen to enjoy positive change after over a decade of illness. I had remote contact with a local NHS sleep service who told me I did not have a sleep disorder (without seeing me), so I sought the help of a charity and used their home testing service. This independent, home testing, that I paid for myself, showed signs of sleep disorder - so the charity kindly arranged for another NHS sleep clinic many miles from my home to take me on, and they agreed to send me a CPAP machine to trial that treatment. I have never met, or even spoken to this clinic - our only contact has been via email. I have been using this treatment since, but have not (yet!) experienced much of a benefit, if any at all. My sleep remains terrible and unrefreshing - and it certainly has not taken away my M.E./CFS or improved my anxiety problem.

There has been no change as far as how I continue to be affected by those longstanding conditions that I receive my benefits for. My G.P. told me this trial/new diagnosis is an additional diagnosis and is supportive of my efforts to try and help myself. I expected a review by telephone with the sleep clinic after a year, but because of COVID and their staff being redeployed, this failed to happen in 2020.

I sought advice when I started the treatment; both a charity and citizens advice told me there was no need to inform PIP or ESA, because this wasn't a change they need to know about, and that I should simply add it to my forms when reviewed (as I have done so for PIP). My understanding has been that this is not a change that affects my benefits but now I am worrying whether this is mistaken and what the consequences are if I have made a mistake here in not informing them earlier. I am an honest person, and would tell them promptly if I was enjoying freedom from my conditions that I have received benefits for - I wish that was the case!

Is this right or should I have informed them earlier? Should I write to ESA and let them know too now?

Thanks

Glen