Factor #3: Lack of integrated and holistic care provision
The term integrated care is often used to describe initiatives aiming to deliver increasingly joined-up care, which is arguably of particular benefit for those with complex chronic health conditions. These initiatives advocate joining up hospital-based care with domiciliary and community-based care, along with greater streamlining of mental and physical healthcare on primary, secondary and tertiary levels, and improved integration of health and social care. It also requires greater emphasis on multi-disciplinary approaches so that patients who require care from within different specialisms (neurology, gastroenterology, urology etc.) are treated more holistically.
It would appear however that the ideal is far from reality at present within the NHS, with many chronically ill people reporting that they feel they are slipping through the cracks in the system. I have spoken to, and worked with, many chronically ill people who have experienced being passed from one specialism to another, with specialists giving conflicting advice, prescribing medicines that are contraindicated with medicines prescribed within other specialities, or simply getting lost in the system, having to wait months or even years to see a specialist, only to be told that their complaints are more the purview of another specialism.
The lack of integrated specialities is in part down to the reductionistic nature of the biomedical model (supported largely by medical school curricula) which essentially reduces the human body to an aggregate of organs and systems which are treated as if they function more or less independently, rather than an integrated whole. If the patient has a bowel problem, they are referred to a gastroenterologist and, if tests come back normal, they are declared ‘essentially well’; it is typically not considered that, for example, the gut problems might be associated with an undiagnosed neurological or connective tissue condition.
The idea of treating the ‘whole person’ is one which the NHS allegedly ascribes to, but I’ve never met anybody severely affected with a contested chronic illness who thinks that they are being treated like a whole person in the healthcare system. In fact I’ve lost count of how many such patients have told me they don’t even feel like they are treated as a human being. Many complementary and alternative medicine (CAM) approaches are based on holistic understandings of the patient; approaches which have generally been vilified by Western medicine for lacking in evidence base. No matter what CAM approaches may lack in evidence base, they may have something to teach Western medicine about truly listening to the patient. Saying that, hubris exists in CAM as it does in Western medicine and I am increasingly concerned by patients (understandably) turning in desperation to expensive yet ineffective alternative treatments. It should be recognised that patients generally turn to such alternatives because they are not being helped by mainstream healthcare.
Numerous structural factors in the NHS prevent healthcare professionals from truly listening to their patients, factors which form the main discussion points in this series of articles. There are however many other factors to be considered, such as the ten-minute appointment slots which are typically offered in primary care with GPs. With the best will in the world, it is not possible for a GP to listen to all of the concerns of highly polysymptomatic patients (such as Long Covid patients) in ten minutes, especially when those ten minutes also include clinical note taking, ordering of tests and onward referrals. It is sometimes possible to book a double appointment, although this is not always made clear to patients. This system may have to change now that the NHS is having to take highly complex, medically uncertain, chronic illness seriously.
It would appear that, as a result of the pandemic, the need for multidisciplinary (integrated) post-viral or post-infectious specialisms is finally becoming clear to those in a position to implement them. The NHS has recently announced the setting up of multi-disciplinary specialist clinics for Long Covid, with a £10 million investment this year. Had anybody in such a position listened to chronically ill patients (especially perhaps post-infectious groups such as ME/CFS and chronic Lyme) at any point over the last few decades, this provision would already be in place, and Long Covid patients would not be cast adrift at the very moment when they most need healthcare.
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