Reassessing chronic illness

The Scream - how chronic illness feels

A thought occurred to me this morning. I know a hell of a lot of people who were labelled with the wrong diagnosis for years before receiving the correct diagnosis. Several people I know were diagnosed with ME before later discovering that they have EDS. Others have been told that their symptoms are somataform disorder (All in the head) and all further symptoms ignored even when life threatening. (Even somataform symptoms can be life threatening.) Plenty of people accumulate conditions and symptoms but never receive a further diagnosis for it, instead having everything attributed to the first illness or ignored. For example I had burning pain for a couple of years before being told that it was diabetic neuropathy rather than being caused by my ME.

The Scream - how chronic illness feels

Given that original diagnoses may be wrong, new symptoms may be missed, new tests and new treatments become available, and new research is undertaken, it makes sense to me that after a long period of chronic illness people should get a chance at uncovering new diagnoses and accessing new treatments. I would like to see patients automatically being offered a chance to start again with a blank slate after a decade of serious illness. A new GP (or perhaps two or three) would assess the patient, new tests would be run based on the latest research, and referrals to new specialists could be made. The latest treatments could then be offered. This could be life-changing for a huge number of people. It would be important for this to happen without referrence to notes except where life-threatening treatment needs to be maintained and without patients pointing the doctors towards their preferred diagnosis. There would also have to be patient choice and other safeguards at the heart of this.

The scheme would be expensive, of course, but it could well also pay for itself in replacing ineffective treatments with treatments that work and in enabling people to restart their lives. And in any case, MPs seem adamant that all articles and disability changes often enough that we have to be reassessed for benefits every year, so I don’t see how they can complain about the cost of this scheme.

What do you think?

Author: Latentexistence

The world is broken and I can't fix it because I am broken. I can, however, rant about it all and this is where I do that when I can get my thoughts together. Most of the time you'll find my words on Twitter rather than here though. I sometimes write for Where's The Benefit too.

2 thoughts on “Reassessing chronic illness”

  1. I’m absolutely all for this. It wouldn’t have to be new GPs and specialists if they were good ones – my usual GP is incredibly open to re-examining things and looking again at existing diagnoses based on new information. However, I think most GPs, and the vast majority of specialists, would have to be new people with a blank slate.

  2. Please …please…please…please…NO!!!!

    The main result would be to cause unnecessary stress and worry to the correctly diagnosed majority (and their families), who would be needlessly retraumatised by batteries of invasive, painful and dehumanising medical tests, with a likely guarantee of losing their diagnosis and any (remaining) rights to benefits or support, unless they complied. Personally, this would make me suicidal.

    In fact it all sounds suspiciously like the ATOS reassessments for ESA. The DWP would surely get their claws into something like this as yet another excuse to make vulnerable people destitute.

    As with the breast cancer x-rays that actually trigger cancer, and the statins that fast-track you to dementia, doctors would get PAID for forcing patients to undergo every test and screening under the sun, however risky, and it would all turn into yet another murdrous scam.

    What is needed is adequate training (and dare I say a system of SANCTIONS) for all DOCTORS ensure they listen to patients, properly check out new symptoms, and keep up to date with new discoveries and treatments. Misdiagnoses generally arise due to jobsworth doctors who refuse to prise their eyes away from their computer screens to actually look at the patient in front of them. They diagnose by stereotypes – young women are depressed because they need nicer boyfriends..older women are menopausal…and so it goes. If these workshy doctors did their jobs properly, differential diagnoses would be considered on an ongoing basis, EVERY time that a patient reported a system that did not fit the mould.

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