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Let's not make a habit of neglecting certain diseases

  • Comments (3)

Unfortunately it is often the same group of patients - allergy is one example, patients with lymphoedema another. Patients with stroke was a particularly desperate example until the launch of the stroke strategy and accompanying investment finally made a difference. Another is chronic fatigue syndrome with a report out this week detailing the continuing failure of services to patients with this condition.

The report By Action for ME found that one in four PCTs do not even commission services for this group. Rightly the charity describes the lack of change or impetus as ‘depressing’ despite repeated assurances from successive governments that the needs of patients with chronic fatigue would be met.

It is frustrating that this condition remains unrecognised and therefore untreated. Patients do not receive the help they need for their condition and have to struggle on, often for many years, with this difficult and debilitating condition. And as research shows that the sooner the condition is addressed the better the outcome, this delay in care is short termism at its worst. Relatively simple measures can make a big difference - this is not a condition that is treated with expensive drugs but is managed by a programme of symptom control, for example managing sleep problems and relieving pain. Chronic fatigue or ME affects each patient differently and to varying degrees so individualised care is important.

It seems sometimes as if there is an acceptance that a certain disease group will be neglected. Does this allow commissioners to ignore it? I hope that this is not the case and this report will shame those areas that are not offering proper services to these patients into making it more of a priority.

  • Comments (3)

Readers' comments (3)

  • Anonymous

    I think the examples you give, with the exception of stroke, are probably not of interest to the drug companies, so little investment is put into their research to produce a pill. Hence they are unfashionable conditiobs to treat. Stroke changed with the stroke strategy indeed, but I think you will find that stroke services have had to be set up within existing budgets. Stroke also falls in the category of 'fashionable drugs' such as antihypertensives, statins, aspirin, clopidogel and dipyridamole, probable diabetic medication, etc. in fact, polypharmacy. The government (DoH) did however, put funding in to set up Research Networks, one being stroke, but the networks now have to generate their own funding, whech is dependent on recruitment targets. The NHS is money driven, hence my outlook on this topic.

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  • Anonymous

    I would agree about the need for stroke services.... but there's no evidence that chronic fatigue/ME, etc. is an actual pathology, as opposed to a set of behaviours with no clear origin. Aren't we in danger of advocating fake therapies for non-existent diseases? Don't we risk advocating funding for snake oil whilst rationing access to evidence based continence care or speech therapy for stroke patients, for example?

    Psychiatry rejects the idea that personality disorder is a mental illness. It's just how some people think and behave. I think this group of 'dis-eases' is a bit like a physical presentation of something rather similar.

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  • Anonymous

    You raise two points:
    1. Is it that there is no evidence, or that we haven't found any yet?

    -either way, there is no denying that there is something (even if it is psychological) that severely limits people's living so shouldn't there be something to address it?

    2. Fake therapies? The difficulty with many of these similar conditions is that there are no drugs to deal with them (as mentioned above), so people distrust therapies that manage the conditions.

    If ME/chronic fatigue isn't an actual pathology - or at least one we understand but is affecting people, how are we responding to these people who miss out on everyday life? They manifest differently so therapies may not work the same for everyone and if the therapies are "fake" then doesn't that show the need for more research so we can actually teach people to manage the conditions?

    Surely both these points demonstrate the need for more understanding about the conditions, as well as categorizing patients as something other than "malingerers"

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