Guest blog by Kim Ryley, an expert by experience on the Expert Advisory group for the Taskforce on Multiple Conditions.
“The question therefore is not whether a Man would choose to be always in the prime of Youth, attended with prosperity and health; but how he would pass a perpetual life under all the usual disadvantages which old age brings along with it.”
Jonathan Swift, Gulliver’s Travels
As a 60-something man with a diverse range of long term medical conditions, who with luck could live for another 20 years, I have been ruminating on this increasingly pertinent insight lately. Although some of my conditions are long-standing, others have been diagnosed sequentially over the past 20 years. All are incurable, though largely treatable to some extent, so a good quality of life is intermittently possible for me.
Along with the growing number of people like me, I am one of the best “customers” the NHS has. Indeed, those suffering the complexities of “multimorbidity” (as it is offputtingly known) now constitute about 75% of all hospital admissions and GP appointments (albeit with few “frequent flyer” perks). Even with the best of care, we will return again and again, often with growing frequency. Maintaining an acceptable level of good health and quality of life for us is now the greatest challenge facing our beleaguered Health and Care services.
My own experiences, in concert with those of many others like me, show that these services are not well placed to respond to this challenge in their current form. With increasing medical and social care specialisation, it is not uncommon for patients to receive skilled interventions separately for each of their specific ailments, without any of the professionals involved having a complete overview of their needs or taking a holistic and coherent approach to their total care package.
Within a labyrinthine care system, people are expected to navigate without a map or any hope of co-ordinated support for their particularly difficult journey. For the individual involved, all too often this can feel like an inhumane, Kafkaesque experience. This can be even more true for those who develop long term conditions before old age, who face an even longer uncertain future.
Daily life lived with multiple conditions can be exhausting and takes a surprising amount of time and effort. There is often little appreciation for the mental strain such ailments cause. It is not uncommon for people with multiple conditions to feel like a good part of their adult life is spent in the psychological equivalent of A&E. People with multiple conditions rarely feel entirely well, even with timely and appropriate treatments, and it is easy for them to end up overwhelmed by growing restrictions to their life, and to become prone to anxiety and depression. Such a situation is also an unhelpfully frequent reminder of one’s own mortality.
It is my belief that what people in this position most want is not simply greater life expectancy, but hope that they can maintain the life they want to lead, free from suffering. Achieving this will require a radical rethink of the traditional implicit contract between doctor and patient. It is not always possible for medical professionals to diagnose, treat, and cure to send us back into society restored and renewed. The notion of always being able to “make us better” is a nonsense for those like me, with incurable, multiple, long-term conditions.
We need a different (more humble, thoughtful and compassionate) kind of care where our voices are heard. We can be helped to manage our own health well, so that we can avoid a slow deterioration which robs us of a fulfilling life. The necessary changes in Health and Care services this will involve, will not happen overnight. But, we can start by improving the understanding and behaviours of medical and other care providers, as well as of those likely to develop multiple long-term conditions.
Such an “inversion” of the NHS would place a new emphasis on sustainable, community-based support, which is accessible, integrated and flexible. It would educate and afford respect to every person to have the confidence to take more active self-management of their care arrangements. Taken together, this would ensure that in the future, “complex bunnies” like me (as my GP kindly referred to me recently) have better experiences. With a greater sense of control over playing the cards life has dealt us, we can go on beating the odds.