Moving from an illness state to a recovery state

Most people most of the time recover in some form from having an illness and are then regarded as `well’.  Some don’t and may come to be regarded as ‘invalids’ by others – and even by themselves! 

Equally some people might only experience a partial recovery, or perhaps a full recovery from one condition or illness but not from another. But the way that illness and wellness are talked about and thought about continues to rely heavily on the assumption that we are well or we are ill, alongside the millions who are categorised primarily as `disabled’. This isn’t good enough, not for patients, not for carers, and not for medics and healthcare staff.

Obviously in reality quite a lot of people are seeking or receiving medical help or treatment at any one time, and so might be partly ill and partly well.  For example, each year in England, there are over 16 million hospital admissions, and an increasing number of those admitted have long term health problems. However, some are new admissions and may be among the 23 million annual admissions to A&E.  Also we mustn’t forget that many will be admitted after seeing their GP: there are 300 million-plus GP appointments each year.

So there’s a large and broad spectrum of people moving in and out of `wellness’ and `illness’ at any one time, and there are some rather important consequences for policies and practices.  For instance from my own experience as a long stay hospital patient last year, I found that one of the most significant issues  that I faced was how do you move on from being ill to live in a recovery state? In my experience there really was a difference between the two …

From Illness to …

Briefly, when I was quite ill in hospital, I was in a world full of routines, medical testing and intrusions into my body by a variety of instruments, with a truncated social life bounded by words exchanged with those in hospital garb.  I was also dependent on them, not only for treatment but also for food and water, clean bed clothes and so on.  At the same time, I felt I was an object of interest to medics because of the complicated illness that I had.  So being ill was in effect a complex social construct, not just a matter of infections and my body’s reaction to them.

For, apart from the boredom, generalised anxiety, and periods of acute fear or pain, I found that hospital life and time were all-encompassing, especially as visitors were barred because of Covid..  For example, I wasn’t the only patient to look forward to doctors’ hospital rounds or a test in another part of the hospital.  We inpatients were both anxious to be visited by the medics and often terrified at the prospect. At the same time, I was aware that some people were content or resigned to being in bed most of the time and to being partly ignored.  Meanwhile what the nursing and other healthcare staff were doing provided a backdrop of interest, and this was of particular concern at times when we needed to ‘call a nurse’.

So, I found that in addition to having a particular medical condition and illness, being hospitalised brings with it enough features to add up to what I’m calling an ‘illness state’.  In this state we patients are thrust into a world of dependence and varying degrees of fear and anxiety.  It is also often a state of insulation from the world outside wherein many everyday tasks, responsibilities and problems are effectively removed from us.

This not a new thought, for example NiCE lists 483 results for `institutionalisation’.

These features of the illness state were often thrown into stark relief when hospital discharge loomed and I became increasingly aware of how tense and jittery patients often became at this time.  Most of those who were going back to their own homes really looked forward to doing so, while others in a less fortunate situation still wanted to leave.  I also saw how difficult it was for many people if they were not discharged at a promised time or date.  Consequently, at times I found myself referring to us hospital inpatients as ‘inmates’.

When I was eventually discharged, I still remember how wonderful it was to go into the ambulance which was my vehicle to freedom.  I mention this to underline how deeply emotional hospital discharge can be for patients, possibly not all, but for a lot of us. Like many others I found the ambulance staff friendly, supportive and quite brilliant.  They might only have been doing their, admittedly difficult, job but I felt ridiculously grateful!

Moving on

Trying to move on to a useful recovery state can depend on these, often-fraught, matters relating to hospital discharge.  In my case I did not have a ‘discharge plan’ despite being promised one.  This meant that I didn’t have any information about post-hospital medical reviews or appointments and I was left taking a number of powerful drugs with strong side effects, possibly in perpetuity.  My GP did try to help but in the end my wife and I had to arrange appointments with a number of specialists.  We managed to call a halt to the polypharmacy I’d endured but this in itself was stressful and certainly didn’t help recovery.

Many others highlight the importance of effective discharge, see for instance, Heléna Herklots on the Royal College of Surgeons of England website.

After discharge, after the short-term elation and fear in equal parts of coming home, the patient is suddenly in a different world and has to find out how to be, more or less anew, more or less remade.  But, as in my case, you can feel stuck, still being a `patient’, still unwell and having to deal with a regime of medications and medical appointments.  Also, returning home especially from as, in my case, a long hospital stay, can require a profound emotional adjustment.  There was the business of getting to re-discover my own home.  This was made more difficult but physically easier too as my wife had arranged for necessary adaptations inside our house.

For myself, and I am sure many others, this was a time to consider rehabilitation – whatever that means (sometimes not a lot really). I’d been offered a standard package of free community services, but only for 6 weeks or so, and at the time of the offer we couldn’t determine what I really needed. We did take up some of these and the services did help a little, though they were not really holistic, nor were they offering rehabilitation as such. In my case expectations of progress came to predominate this period of after-hospital life.  In my mind I have characterised this phase as the recovery state.

Adjustment can be hard

Others’ expectations can become unrealistic, onerous, and also perhaps gratifyingly loving and supportive.  Consequently problems can arise because neither we, nor our relatives and friends, have usually received any appropriate support or training in how to be or what to do in this situation. Of course those with long term experience as carers may better equipped to help but much depends on whether this help is available in the first place.

To move successfully to a `recovery state’ also often involves finding one’s way through the range of services at community level, such as physiotherapists and district nurses. To say the least, it is not helpful from the patient’s perspective that, beyond initial referrals, these are generally run quite separately from equivalent physiotherapy or other hospital-based services – some sort of seamless service would really be of help here.

The recovery state is, in my view, a difficult but potentially useful and very important phase in a person’s life, and for their carers and relatives as well.  Yet it seldom seems to attract sufficient attention among healthcare providers and politicians.  Most of us are probably aware of someone whose recovery has been stalled because the person has not received help when they needed it, too often because services have been cut to the bone or beyond.  Some may also be so stressed or struck down by depression, for instance, and may not be able to access appropriate support.  And, without receiving the right help at the right time(s), an ex-patient can easily feel abandoned and fearful for their future.

So how can hospitals and community services help to ensure that people successfully and usefully move on to maximise their recovery?  Posing this question seems to invite an obvious answer – ‘pay more attention!’ Beyond that, it is about helping people to find a route forward that is clear and achievable and about making the resources available.

Finally, things have moved forward a lot in regard to some medical conditions such as strokes and heart attacks, and post-Covid services, where more comprehensive multi-disciplinary services are available (or meant to be available) to help people recover.  But this holistic approach needs to be available across the board, otherwise too many people may be stuck unnecessarily in an illness state and that’s simply not good enough.

“Health is a state of complete physical, mental, and social well-being, and not merely the absence of disease or infirmity”.  World Health Organization

For a discussion of common health and illness concepts see, for example: Disease, illness, sickness, health, healing and wholeness: exploring some elusive concepts by Kenneth M Boyd in the BMJ.

NOTE: `Integrated Care Systems’

Fundamental changes are taking place in the organisation of health and care services in England.  According to the Government’s NHS Long Term Plan, from April 2021, all parts of England are meant to be covered by Integrated Care Systems – which are described as new partnerships between the organisations that meet health and care needs across an area.  The implications of these significant developments will be discussed in a future Post.

See also explanation of these plans by the King’s Fund and critique by the NHS Support Federation.