Leaving hospital: how was I going to get better?
I still remember when I was let out of hospital. As I was wheeled to the ambulance I revelled in the fresh air and feel of light rain. I was then delighted as we drove through ordinary streets, past people walking on pavements. We moved on through roads cushioned on both sides by green trees and bushes back to a home I hadn’t seen for nearly four months. It was a bright, wonderful, day.
In April 2020 my ordinary life had come to a halt as I became something less than conscious. I had taken to falling over and was unable to do everyday things. I now know that I had contracted one or more infections and that ensuing fevers led to delirium and seizures. Apart from substantial mental distress I lost physical strength, and could barely do more than remain slumped on a couch or bed. As a result, I was hospitalised as doctors tried to find out what was wrong and to devise treatments.
Although the infections and their effects were treated while I was in hospital, I was left with muscle wastage and much reduced cognitive, emotional and physical energy. So how was I going to get better? The medics said that I should eat well and try to exercise. Although they meant well it was hardly a comprehensive plan of action. How do you move on from being in an ill state to a recovering state? By the way I didn’t have Covid, however, ever-growing numbers of people who have been diagnosed with the virus, as well as people like me with other health conditions, are left wondering how on earth they are going to get properly rehabilitated.
“The art of being sick is not the same as the art of getting well.” – Tony Snow
What does rehab mean?
Current rehabilitation services no doubt greatly help some people. But, although the intention is to restore someone to health or normal life through assistance and therapy, in practice it was almost impossible for us to know exactly what I needed or to access rehab services in a timely manner. In retrospect it is clear that a major part of the problem is a lack of imagination, even vision, in thinking about the purpose of rehabilitation as well as lack of insight or concern among those responsible for making sure these services are properly resourced.
Like many, we were offered a standard 6-week package of rehabilitation services from the local council, which consisted of carers calling a couple of times a day and some visits from physiotherapists. But in reality this was way below what was required. For a start, in order for me to return home, it needed to be made safe and suitable for my needs. My wife arranged for our house to be adapted so that I had an accessible bathroom and downstairs bedroom. Luckily we had enough savings to pay for this but many wouldn’t and the provision of housing adaptations in England is still notoriously underfunded.
Next, we reluctantly concluded that brief visits from carers were not going to be sufficient and we’d need a full time live-in carer. Neither of us had a comprehensive list of what skills and experience were required but my wife did some research and we found someone, let’s call her J. She was remarkably empathetic and easy to get on with. J used her undoubted skills and experience and helped me to overcome many of the physical problems that I had on hospital discharge. Also, she really supported my strong motivation to get well. Again, we were lucky in being able to pay her for as long as needed. This fulltime option would be unattainable for many other people without the financial resources, as one government after another has dodged the urgent need to fund social care properly.
Failure by design?
I needed help in getting reasonably active (I’d previously been a keen walker). When I left hospital I was given a ‘zimmer’ walking frame but, in practice, it actually hindered my attempts to walk normally. Even when properly adjusted by a community physio, the frame made me bend forward and gave me neck ache. It was unstable when used at anything like a proper walking pace and forced me to look downwards far too much. Its design also demanded that the user only take short steps, anything longer led to hitting one’s toes painfully against a metal bar.
We looked urgently for something better, something less disabling, which resulted in an expensive distress purchase of a robust three wheeled walker. We had to do our own research and place our trust in commercial suppliers. In short, we were forced to become experts very fast and again had to delve into our savings. But this equipment also had design faults. Even after adjustment it led to muscular pains in my neck and shoulders, and it became unstable on anything other than smooth surfaces – good pavements anyone?
Despite these problems, I managed to become more mobile and the community physio thought I’d progressed sufficiently to be given an adjustable walking stick. Although I’d had a short demonstration of how to use it, it was hard work and led to aches and pains in whole new muscle groups. Once again I found that I had to adjust to it or either live with pain, or unhelpfully, walk a lot less. In retrospect I suppose the stick forced me to walk unaided, and although this can still be a bit painful, it has enabled me to move naturally again.
But I’m left wondering how many people aren’t able to get fully mobile and fit because of the poor design and prescribing of the very equipment that is supposed to help them. How many are left shuffling about slowly and bent over badly as a result? It seems incredible that, in 2021, we’re still disabling people through the provision of inadequate or inappropriate mobility aids!
There is much more to be explored about what proper rehabilitation really means. For example, just what is readily available, or not, to enable people relearn how to make a meal or wash their clothes. How can people relearn the art of ordinary conversation especially after long hospital stays with no visitors? What about self confidence, sense of purpose, or how to feel safe or capable again? You’d have to look pretty hard to find services which could help with these needs.
Also, there is one condition that I revel in and share with lots of other people. It’s called Biophilia and means I need access to greenery and wildlife, birds, bees, flowers and trees. Yet I saw no greenery during the endless months in hospital, and many people can’t access it on the outside either. There’s plenty of evidence to show how this kind of deprivation impacts negatively on health and wellbeing but it is paid so little attention by those designing health and social care services.
Finally, there is the whole domain of characteristics and capabilities which go to make up a proper, functioning, human being. For instance I’ve found that new memory problems impede normal discourse and lead to a serious increase in the ‘why did I come into this room?’ syndrome. There is also a marked increase in emotional lability, including a sometimes all-encompassing sense of frustration. I find that I’ve a new, rather unpleasant, staccato laugh. Who do I turn to in order to relearn or change these things that are all part of real rehabilitation and recovery? I have no idea and, what’s worse, I don’t know of any professionals who could help.
In an ideal world, there should be someone at community level responsible for co-ordinating post-hospital rehabilitation who can arrange access to services that are designed and tailored to maximise each person’s chances of full physical and mental recovery. This shouldn’t be a far-off aspiration. If we don’t fix these matters, the lives, health and well-being of large numbers of people are at risk – not only of the individuals concerned but also their partners, families and carers. It would be transformative and, of course, it will need proper resourcing, but probably less than what it is costing for, say, 8 miles of HS2.
