This was the title of a recent editorial in the British Medical Journal (BMJ2016;352:i1651) It took my eye because, over the last 8 months I have been a main carer for someone who has become very dependent – chairbound with limited mobility – as a result of bilateral lymphatic/venous insufficiency of her legs compounded by a period of 6 weeks total immobility in hospital during an episode of refractory septicaemia.
Looking back over a long career as a health service planner, manager and policy wonk I can trace the rising prevalence of references to carer needs. I have no doubt that I used the term a lot myself but without really understanding the full implications of the carer role. It has become just one more part of that large vocabulary of buzz words that health service and social services people use without really understanding their deep meaning.
To quote from the BMJ piece, “Population ageing and fiscal austerity are set to increase the reliance on family carers, who already provide much of the support for people with long term health conditions. Although most carers are willing, providing care can be hugely stressful, affecting mental and physical health and resulting in social isolation and financial hardship. When under strain, carers are less likely to be effective, increasing the risk that the care recipient is admitted to hospital or a care home. Health systems could reduce strain on family carers by routinely considering carers’ needs alongside patients’ needs in everyday healthcare decisions – a concept we term “ care proofing”.”
“Few clinical studies have collected data on both patient and carer outcomes. From a research point of view there needs to be a twin focus on collecting more data on the effect of patient interventions on carers, and routinely using these data to inform reviews, meta-analyses, and economic evaluations. The National Institute for Health and Care Excellence already stipulates that economic evaluations of new healthcare interventions should consider carers’ outcomes as well as patients’. This is rarely done although recent methodological advances ought to support this practice.”
“One problem with existing forms of carer support is that the interventions often come too late, with carer stress treated as an inevitable side effect of the patient’s condition.”
My own experience of being the sole carer plus main housekeeper has been both arduous and tedious. Pushing wheelchairs, moving glideabout commodes, and manipulating rotundas and molift risers is hard work. None of these bits of equipment seem designed to make life as easy as possible for the carer who in many cases – not my own fortunately – may be old and/or frail.
By its very nature the carer routine is more or less the same every day and for a sole carer it does not often allow for any significant amount of time off. It is mind numbingly boring.
Another feature that I had not anticipated is the emotional stress that arises from the inevitable empathy that develops with the patient particularly when the patient is a spouse or close relative. Their pain and discomfort becomes one’s own. For me this has been the most problematic aspect of the role.
Disappointingly, in the course of my carer career, involving lots of district nurse visits and occasional GP contact, very rarely has my own state been asked about. It clearly is not part of their normal agendas. But these are busy people with more than enough to do dealing with their patients’ needs. It seems to me that someone within each general practice and within each District Nursing Team ( and probably within each Social Services Community Care Team too) should be give a specific responsibility for “carerproofing” their services. Interestingly another piece in a recent edition of the BMJ made reference to a carer support scheme in Derbyshire where a GP, appreciating the plight of some carers, contacted the county Carers’ Association as a result of which it established a Carers’ Clinic in the GP’s Practice premises available to both practice patients’ carers and others. It seems that responses to this development have been strongly favourable with a lot of positive feedback. GPs in the practice have become better at identifying carers and now feel there is something to offer them. The net result is that the local clinical commissioning group is now supporting the integration of care support workers into 17 other general practices in the county.
I think this is an interesting, probably a necessary development, but not sufficient. It needs to be supplemented by the designation of specialist carer support individuals as proposed above.
Ultimately, the carer issue is just part of the broad wellbeing agenda. The wellbeing of the carer should be a legitimate issue in its own right. But more than this, the wellbeing of the carer inevitably affects the wellbeing of the patient as well, of course, as vice versa.
In a way therefore the ignored carer syndrome is but one symptom of the absence of wellbeing awareness in the NHS. A regrettable state of affairs which no one seems concerned about.
Paul Walker, May 2016