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As i have mentioned before (see CBT (2) and CBTupdate) i get an HPI payment through my employer’s insurance scheme, and they forcefully “encouraged” me to go to CBT.

Recently i went to see my NHS specialist and the insurance company wrote to him for a copy of his report (they like to see everything related to my health). He has written them a great letter and i thought i would share my joy by copying the important parts below:

Her condition has deteriorated significantly…her physical activity is reduced to 5-10 minutes without needing to rest… She is dependant for her ADLs (Activities of Daily Living) on assistance from her partner. Her memory and concentration is poor. She needs to sleep during the day.

She is not fit for work of any kind at present and is unlikely to be fit for work in the next six months, as a minimum.

Since she last had involvement with our team her condition has deteriorated. This is in part because you company required her to attend CBT with a therapist who has no knowledge of the management of CFS/ME – this has contributed substantially to her decline and was an entirely inappropriate intervention which should have been discussed with me first, as her treating clinician.

Her depression is secondary to her underlying physical condition. There are no secondary psychological conditions preventing her recovery.

I would note that from the tone of your letter and from the approach you have taken to my patient that you view her illness as entirely a psychological one. This is entirely unacceptable and demonstrates an inadequate knowledge of the current theories of the aetiology of chronic fatigue syndrome. CFS(ME) is classified as a neurological disease under ICD-10 and as a physical disabling condition in the NICE guidelines of 2007. Current research has shown that there is a genetic susceptibility to develop the illness, which in about 50% of cases can be triggered by infection, as in (my) case. We believe that infection leads to a dysregulation of the immune system, probably involving the IL-6 – IL6R system, which in turn leads to generalised autonomic dysfunction, the degree of which can be correlated directly to the level of fatigue. The muscle pain in CFS(ME) has been shown to be due to lactic acid accumulation in the muscles secondary to abnormal muscle blood flow. Functional brain imaging and neuroendocrine testing has shown that depression and CFS(ME) are completely distinct. I trust that henceforth you will treat her condition from the appropriate medical perspective.

It is so good to have this statement of support from the specialist. Hopefully it will keep the insurance company off my back for some time, although since i told them how i was not well enough to go to CBT any more they have not contacted me much at all, just sending the annual review documents/forms to fill in. After ringing me every two weeks over a long period before i went to CBT to check how i “felt” about it, and me forcing myself to go twice, despite how totally draining it was to answer an hour of personal questions, and not wanting to go at all, there seem to have been no repercussions to me stopping it. If only i had known that before! I think the insurance company are very fickle…

On a more general note it is so reassuring to read his statement about CFS/ME. Despite having seen him several times before and attending regular group sessions with his team, i was never completely sure of how he felt about the illness and it’s causes etc, which affected my experience in those groups. The support they offer is obviously very limited by the NICE guidelines, and i found it of limited use (despite this, the specialist advises me to go again – deep joy), but it is good to know what he thinks. He genuinely seems to care about pwME and our cause and wants to help us. It must be very difficult for him not to be able to do more.

Well, i was supposed to have CBT on Monday. I was not well enough to go, so cancelled for the second time in a row. This time, however, i spoke to the psychologist who does it and he asked if i wanted to make another appointment. I said that i felt that the chances of me being well enough at any given time are quite slim and that even when i did feel able, such as the last time i went, i suffered a bad flareup of symptoms and felt very unwell for about a week afterwards, and that i did not think this was a reasonable thing to have to go through. I said that i thought it was better that i don’t hold up his waiting list and waste appointments as i did not feel this was the right time to try to attend CBT… not that i think there will be a better time 😉

 

He was very understanding. He said he had had contact from my insurance company (who had “suggested” i had CBT in the first place) who wanted a written report from him. I had already told him that i was uncomfortable with them and the information they have gathered about me, some of which i felt was not particularly relevant or accurate, so he told them he would have to show me anything he wrote before he sent it. Very nice of him. So after i said i did not think i would be coming back he offered to write a letter to the Insurance company on my behalf and said he will email it to me to check beforehand. I have not had it yet and i hope he does do that. He even asked me what i wanted it to say! I said that if he could back me up that i do not seem well enough to attend and also if he felt comfortable to say that he does not feel i am in dire need of CBT right now, i would be very grateful… he has only seen me for two hours in total and that was just asking me a lot of questions and setting the scene i felt, rather than actually doing CBT… so we will see what his letter says…

Also i did contact the DLS (Disability Law Service) and explained my situation to them, that i felt bullied into CBT and worried what they would “suggest” i undergo next, or that they would stop my payments… i don’t think i should say exactly what they said but they sent me a good email of suggestions of what to do if they do continue to make claiming difficult 🙂 Thanks DLS! I feel more empowered! Thanks also Rachel for sending me the link in response to a previous post on CBT.

I probably should have told him more specifics of how badly attending had affected me last time as it was like i had used up all my cognitive function in one go answering all his questions and spent the following couple of days lying in bed and my brain was in meltdown – random thoughts flew in and out – i couldn’t remember certain things and kept thinking i had forgotten things (i probably had!) and it was all a bit traumatic. Although maybe if i told him that he would think i needed more CBT… sigh! So for now i am released from it, or at least in the process of, i am just waiting for the phone to ring though… the insurance company have not rung me for ages and it has been so nice to be left alone as they were ringing me very often for a while there before the CBT started… i suppose i will have to start screening my calls again… sigh. I always ring them back but sometimes i just am not in the right frame of mind to deal with their stupid questions…

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