We all know that a large percentage of self-care management is performed by the patients ‘informal’ carer. This is especially true for patients who are significantly debilitated by their disease. So why aren’t they receiving more attention?
The results of the 2008 Carers Week survey highlighted just what effect caring can have. Notably, 77% of the nearly 2,000 carers surveyed feel their own health is worse as a result of the strain of caring, yet 95% regularly cover up the fact that their health is suffering. Not surprisingly, the majority admitted that their health problems affected their ability to care and that they are concerned about who would take on their role should they fall ill. The survey concludes that carers can’t afford to be ill.
This got me thinking, prevention is better than cure. So what can respiratory nurses do to alleviate the burden of care? After all, if the carer’s health breaks down, it then falls on the NHS to pick up the pieces – for both patient and carer.
How confident can you be that in a busy clinic or ward the needs of a patient’s carer are met? Yes, the carer might be present during consults and education sessions, but is that enough?
Carer support groups do exist here and there, but it is generally the most in need that are not able to access such resources. The needs of carers are being recognised to some extent through government initiatives, including the right of carers to seek a formal assessment of service needs. And indeed some UK respiratory centres, such as the Rotherham Breathing Space Programme, are taking lead roles in recognising and acting on the needs of carers.
The evidence to support the assertion that caring for a chronically ill loved one is significantly correlated with poor mental and physical health is staggering. In fact it is shocking. There are no easy remedies for this, especially if many carers ‘cover up’ their poor health.
Including carers in pulmonary rehabilitation programmes sounds like a good place to start. This initiative is already taking place in some services. The logistics of carer inclusion in rehabilitation may be difficult to overcome. However, given that an important aim of rehabilitation is for the patient to make lifestyle changes, it seems sensible and much more profitable to include the person the patient spends most of their time with. I know I always exercise more if I have an exercise ‘buddy’.
But let’s not forget the wider benefits of carer inclusion – if the evidence clearly indicates that their health is suffering then we could be gaining a two for one benefit with this approach. And if carers can’t afford to be ill, then I suggest the government and NHS look at innovative ways to keep them healthy.
Many carers do not define themselves as a ‘carer’ and see their role merely as an extension of their loving role. Indeed, many carers find the role rewarding and fulfilling. But this cannot distract from the evidence of the deleterious effects of caring for a loved one and our role as nurses, and that of the wider community, in trying to lift the burden. Much work is being done to try and bridge the gap, but much more is yet needed.
So, let’s not forget the often unsung hero who might be putting their health at risk to care for their loved one.