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"Appalling experience."

About: Derriford Hospital

I suffer with Fibromyalgia, CFS, Insomnia, Chronic lower back pain, neck pain, knee and hip pain. While explaining how unhappy I am in life due to my quality of life, and that I believe there is something that hasn't been diagnosed causing the issue, the consultant asked me "why do you want a label for it?" Aside from the fact that that's why people come to hospitals, to be diagnosed and treated, I was insulted that my in-depth answers were taken and ignored. I was treated with no compassion or understanding and am still having to put up with daily debilitating chronic pain, lack of energy, and having little to no restorative sleep. His solution was a body reprogramming course for I weeks, reading online materials, and no helpful medication or route to insomnia diagnosis and treatment. I can't be the best father to my 3yr old daughter, or the best partner to my woman, I barely shower or keep basic routines, and I can barely do any housework. I'm bedbound exhausted 14-18 hours a day with pain and no sleep, yet I'm expected to take up an 8 week course. Yet another specialist unit, another appointment, and yet again, I feel unlistened to, not taken seriously, and like I'm unable to get my life back. I hope others aren't in the same boat. Cognitive Behavioural Therapy, Gainful Excersize Therapy, Body Reprogramming. These are not helpful therapies, and has been proven time over. Nice guidelines even stopped suggesting them! I asked to be taken off of the duloxitine as it's being used off-label for pain management but it's effects aren't noticed by me - the person I saw ignored that too. Recent studies also show chronic pain users that are perscribed antidepressants for off label pain management, 71% of patients end up with dementia or other memory issues. I'm heavily disappointed in my experience, and want to be taken seriously but this appointment has been more of the same previous experiences I've had.

I understand I have neuropathic pain, but I also have chronic back and neck pain that the gabapentin simply won't touch, or my damaged knees and hip, or my burning feet, or lactic acid build up in muscles from simply walking 50 meters.

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Responses

Response from Derriford Hospital 14 months ago
Derriford Hospital
Submitted on 27/02/2023 at 07:16
Published on nhs.uk at 19:10


Dear Mr Read

I am so sorry to read about the problems you have experienced.

Whilst I can see your name, I wonder if you could please get in touch with our Patient Advice & Liaison team (PALS) to let us know which area or speciality this relates to. That way, we can look into your concerns and ask the service involved to respond to you directly.

PALS can be contacted on 01752 439884, or by email at plh-tr.PALS@nhs.net

I have registered your contact under PALS 71228, so please quote this when you contact PALS so they can align your website comment.

Many thanks

Alison Stanton

Patient Services

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