This guide can be downloaded as a pdf file here.
- Are you in hospital following an emergency of some kind?
- The older you are the more likely it is that you’ll have a fall and damage something, or a medical condition will get worse. It’s not unusual for us over 70s.
- There are quite a few stories you can read of older patients being taken into hospital all of a sudden, in an emergency: they get better, want to go home, but then find it’s difficult to do that. And the longer they stay, the more difficult it gets to go home. Staying in bed for long periods weakens your muscles, and having things done for you weakens your confidence in doing them for yourself.
- Not only that. If you have family or other people living at home with you, and they see you falling into a decline, they get to doubt their own ability to look after you, and then it’s easy to persuade them that the best place for you will be a care home.
- So what can you do? The temptation is to give up. I have a simple message for you: Don’t!
- In this booklet I offer some straightforward advice to patients – and family and friends – about how to escape from hospital while you still have your strength and confidence.
- Trapped in hospital: four dreadful warnings
- What happens to you in hospital: ‘hospital-acquired deconditioning’
- Your rights … and the reality
- There is no conspiracy to keep you in
- Three things you need to be before you can leave: recovered; physically fit; mentally fit
- Be aware of what’s going on around you
- Keep a diary
- Exercise your body
- Ask for help with keeping mentally fit
- Take advantage of NHS England’s rules about when a patient is ready to go home
- Don’t worry about being a nuisance
- Be aware of ‘hospital strategies’ for freeing up beds
- The last resort: to get more information, say you want to leave
- Advice for family and friends
- Good luck!
1. Trapped in hospital: four dreadful warnings
Here are the stories of four patients.*
Mike, aged 89
Mike was enjoying an early evening at home when he tripped over the edge of a rug and hit his head on the side of a cupboard. He remained conscious and was able to get to the phone to call 999. He was seen swiftly in A&E and was found to have no serious injuries, just some bruising.
The medical team decided to admit Mike overnight for observation, as a precaution, simply to be sure he was safe to go home. A day or two passed, during which time some tests were carried out. They all confirmed that there had been no serious or lasting damage and no underlying cause for the fall. He had simply tripped.
10 days later, Mike was still in his hospital bed. By this time he had lost a good deal of mobility, so an assessment by the physiotherapy team was arranged. The physiotherapists felt that Mike really needed assessment by the occupational therapists, and also by the social work team. All of these assessments took further time to arrange, and the days turned into weeks.
Based on the assessments, a recommendation was made for 24-hour residential care and that is where Mike was placed.
The occupational therapist (OT) who conducted Mike’s assessment felt very strongly that had the physiotherapists, the OTs and the social care team all worked together as a single unit from the outset, this scenario might have been avoided. They could have worked in parallel rather than in series, thereby dramatically reducing the time it all took.
Furthermore, the opinion of the OT and the other teams involved was that, had they worked more effectively together, Mike could have gone home, with reablement support for his mobility issues.
* * *
Jane, aged 85
Whilst cleaning her kitchen, Jane, who has had insulin-dependent diabetes for 59 years, slipped on the wet floor and fell. Jane was enjoying living independently with the support of a care package to help monitor and control her diabetes. She was seen in A&E and admitted for observation and monitoring of her diabetic control.
10 days later, Jane was declared medically fit. She was keen to go home.
There was then a series of delays with discharge, as a result of some internal communication processes not working as well as they should. Three weeks following her fall, Jane developed a severe hospital-acquired infection. Two months after admission to hospital, Jane was discharged – to a residential home.
Had Jane’s discharge been managed more effectively and rapidly, she would have been less likely to suffer a hospital-acquired infection and far more likely to have been discharged to her own home and independent life – as she had wanted.
* * *
Jean, aged 90
Another example of decline, this time in a community setting, is provided by the Embrace Care project in Cornwall:
Day 0: Jean, an elderly woman with a history of falls, has a fall at home. After a very short stay in the acute hospital, she is discharged to a community hospital.
Day 1: At this point Jean is able to use the commode, is washing herself (with some support to reach her feet), cleaning her teeth, brushing her hair, and is moving around. She says she wants to return home when she is discharged from hospital. A search begins for support at home to enable her to do this.
Day 60: After many attempts to source a support package in the community have failed, Jean is told she will have to be moved into an intermediate care setting while a long term support package is found. She spends the following two days in bed.
Day 62: Jean starts to require full support to wash herself.
Day 74: A support package has been found to allow Jean to return home. However, her needs have increased and her physiotherapist suggests that the support package is now not sufficient, and it is refused.
Day 78: A checklist is completed and Jean again expresses her desire to return home.
Day 89: Jean is moved into a temporary bed in a care home.
Day 185: Still in the temporary bed in the care home, Jean dies.
* * *
Ann, age unknown
The fourth patient story is an anonymized account of two visits a week apart in July 2019 to an elderly woman patient in the Royal Cornwall Hospital at Treliske, near Truro. The interviewer was from Healthwatch Cornwall. On the first visit the patient was engaging and engaged:
[Ann says] ‘I have good and bad days. It feels like I’ve been in hospital a long time – too long. … I have no idea when I’m leaving. The doctors haven’t spoken to me about leaving here yet. I’m worried about money. It’s not always possible to get what you want. I’m from a large family and wish I could be with them now. But I’m quite happy here on the ward. The food is good and I’m well looked after.’
[The visitor says] ‘We visited Ann again seven days later. It was like visiting a different patient. Last week she was engaging and although [she] clearly had a level of cognitive impairment, she had a degree of understanding and seemed happy and talkative. Today she seemed unhappy and distressed and kept repeating that she wanted to go home.’
– – –
If you want to avoid an outcome like the one these four people suffered, this booklet is for you.
2. What happens to you in hospital: ‘hospital-acquired deconditioning’
What happened in all these cases was that the patient got better in some ways but worse in others.
They got better in the sense that the injury or ailment that caused them to be admitted to hospital was put right, but they got worse in the sense that they became physically weaker and mentally frustrated and distressed. The technical term for this is ‘hospital-acquired deconditioning’.
3. Your rights … and the reality
According to the NHS Constitution: ‘You have the right to receive care and treatment that is appropriate to you, meets your needs and reflects your preferences.’ The handbook on the Constitution adds that your need for care and treatment must be met (subject to certain provisos), while your preferences should be reflected where possible.
It was the very clear preference of all the patients in the four stories that they should be enabled and allowed to leave hospital and return home. In none of the cases did that come about. The reality was that their constitutional rights weren’t effective. They existed in documents, but they did not exist in practice. You can’t depend on them.
According to the organization NHS Improvement,
up to half the reasons why patients are not discharged earlier are under the direct control of the hospital itself and often relate to ineffective internal assessment processes, lack of decision-making and poor organisation of care management.
So if you want to have the best chance of getting out at the earliest opportunity, it will help you greatly if
you know about these ‘internal assessment processes’ and can recognise them when you see them;
you can get the management to take decisions when you are ready, not just when it suits them;
you notice how your care is being managed and speak up when it’s not being managed in a way that reflects your preferences.
4. There is no conspiracy to keep you in
On the plus side, no-one in the hospital wants to keep you in unnecessarily. They would like to see you leave in a good state and happy with the care you’ve received. They would like to have your bed free to allocate to another patient. They certainly don’t want you coming back later because you’ve had a turn for the worse. So they want to be sure your treatment is working as it’s supposed to. But some doctors may be less confident than others that their diagnosis is correct. Some will simply want to keep you in for observation. And some nurses may fear that you won’t be able to cope if you go back to your own home.
Hospitals are complex organizations. There is a management hierarchy, as well as doctors and nurses, of various levels of seniority. There are other health professionals and people carrying out many ancillary and technical functions. And when it comes to patients leaving, especially older people living with frailty and living on their own, the hospital needs to assure itself that you will be able to cope, so more staff are involved in checking on this. Everyone is aware that if something goes wrong there is a buck that will stop somewhere.
The problem is that your time is not valued. So you are kept waiting: for decisions, for information, for care to arrive. Which is a sign of their failure to put your well-being first, possibly even to give any thought to how you are feeling. But you can change this.
5. Three things you need to be before you can leave: recovered, physically fit, mentally fit
For you to get yourself out through the door, there are three things you need to be:
- You need to have recovered, or be well on the way to recovery, from the accident or ailment that landed you in hospital. if you broke a limb, it must be mended. A wound must be healed. If you’ve been ill, you must be free of the symptoms.
- You must be physically fit, sufficiently so that when you leave you are able to keep yourself clean, properly fed, properly exercised. Bear in mind that without exercise physical decline can be very rapid: Jean’s two days in bed severely reduced her ability to look after herself unaided. As we see from the patient stories, hospital-based physiotherapists have in practice the power to prevent you from being discharged other than into care of some kind.
- You must be mentally fit. To resume normal life you must be capable of taking decisions and organizing your activities. Waking up in the morning day after day to find yourself stuck in a hospital bed, and subject to an institutional routine, is bound to destabilize you. This will be especially so since other people will be telling you what to do, in a way that you may not have experienced since you were a child. Your circumstances may have changed very abruptly, especially if you’ve had an accident. You’re likely to find yourself feeling very sad and tempted to give up, to become resigned to your fate. But to take the decisions necessary to make a successful escape you need at the very least to be in control of what’s going on in your own head.
None of the four patients’ stories explicitly mention the patient’s mental health. But we can see that all four of them had been abruptly plucked from familiar surroundings and were now being deprived of stimulus, of control over their own daily pattern of life, and of the opportunity to discover from those in positions of power what the future might hold for them. These deprivations cannot possibly have helped them to maintain a good level of mental health. What we see in the four stories is a process that, irrespective of their physical health, inherently disables people by inducing in them a state of frustration and despair.
– – –
If you’re in a similar position to Mike, Jane, Jean or Ann, you need to resist!
The remainder of this booklet has some suggestions.
6. Be aware of what’s going on around you
We can see from the patient stories how disorienting, discouraging and generally damaging it is not to know what’s going on around you: what’s being done to you and for you, where it’s heading, and what stands in the way of your leaving.
To be aware of what’s going on around you is the first rule of resisting. Practise being observant. Notice what’s going on. What happens on the ward that you’re in? What is the daily routine? How do the staff who are looking after you behave? Do they seem well-trained and used to working smoothly with one another? Or do they get flustered easily?
Just being aware of what’s going on around you is a way of taking you out of yourself, away from brooding on how bad you’re feeling, away from sinking into depression.
Ask to see – or at least be told – what records of your condition are being kept. After blood samples have been taken, ask what they showed. Watch the doctors and nurses and other staff, and make an effort to overhear their conversations. Do doctors consult nurses about how you have been since they last saw you? How is information about your condition passed on? When someone asks a question about you, do they get a straight answer or do you detect some evasion?
Who gives orders, to whom? Can you tell at a glance who’s senior, who’s new, what the ‘pecking order’ is? How are students treated: with kindness or with mockery? How are other patients treated?
7. Keep a diary
Keeping a diary is a brilliant way of keeping tabs on what is going on for you and around you. You can jot down your observations of your surroundings, of course, and how you are feeling day by day. It is somewhere to record what you have done to keep up your physical fitness and mental fitness (see below). And it is particularly good for recording day by day what was done to you and for you in the course of your treatment and what progress you have made.
A diary can be an old-fashioned notebook in which you note the events of the day and write down your observations and feelings. If you are technology-savvy, then use a smartphone or tablet to keep notes, or to send messages to yourself or to a friend or member of your family.
8. Exercise your body
The patient stories demonstrate the huge importance of keeping up your physical fitness. You should know that for people over 80, 10 days in a hospital bed leads to the equivalent of 10 years of ageing in the muscles, and building this muscle strength back up takes twice as long as it does to deteriorate. One week of bedrest equates to 10% loss of strength, and for an older person who can just manage climbing the stairs at home, getting out of bed or standing up from the toilet, a 10% loss of strength may make the difference between independence and dependence.
So make the most of any physiotherapy that is offered. Ask to be shown any exercises that you can do on your own. If you are enthusiastic about keeping fit, any good physiotherapist will be enthusiastic about helping you: your progress will be a credit to both of you.
9. Ask for help in keeping mentally fit
Just as you wouldn’t think twice before asking for help to keep physically fit, you shouldn’t think twice before asking for help to keep mentally fit. Take advantage of any opportunities to keep your mind active. Some kind of counselling service should be available in an acute hospital, perhaps provided by a psychiatric liaison team, and a counsellor should be able (1) to suggest how to keep your mental agility up to scratch, if necessary, with games and other exercises; (2) to help you maintain your attention span when you watch news or current affairs programmes on TV, or read or listen to music; and (3) most importantly, to help you with your state of mind.
You should be able to talk to a counsellor in confidence about the fears and anxieties that you have about being in hospital and what the future holds for you. A counsellor could also act as a communication channel, someone whom you can ask about decision-making processes within the hospital and who might be willing to pass messages on tactfully to doctors, nurses, physiotherapists and other members of staff whom they know.
10. Take advantage of NHS England’s rules about when a patient is ready to go home
NHS England, the body that supervises NHS hospitals, says ‘a patient is ready to go home when all of the following three conditions are met:
- A clinical decision has been made that the patient is ready for transfer home.
- A multidisciplinary team decision has been made that the patient is ready for transfer home.
- The patient is considered to be safe to discharge/transfer home.’
So if you feel you are being held up in hospital when you ought to be released, you should ask which of these conditions has not yet been met.
If it’s condition 1, ask when the decision will be taken. Who will take the decision? Has a meeting been arranged? If not, why not? When will it be arranged?
A doctor may tell you he or she needs to say you are ‘medically optimised’ before they will be willing to discharge you, which sounds as though it is a decision which you can play no part in. But you can always ask some questions: ‘How will you know when I am medically optimised?’ ‘What will you be looking for?’ ‘How close am I?’
If it’s condition 2 that’s holding up your discharge, ask who the members of the multidisciplinary team are. NHS England says they are expected to be people from all the relevant professional groups who have knowledge of you and the support you will need in your home setting. If you want members of your family or carers, or friends, to contribute, then you can ask for them to be involved too.
The role of the multidisciplinary team is to balance your requirement for health care, your desire to return home as soon as possible, the harm you might suffer if you stay longer in hospital, and the risks of being discharged home too early and having to be readmitted.
As you can see, what decision is arrived at will depend heavily on judgments. Hospital staff will judge your healthcare needs and the risks of early discharge, and may well want to be on the safe side, as they see it. So you will need to prepare in advance by thinking about your needs and how they will be met: that’s needs for food, warmth, personal care, getting up in the morning and to bed in the evening, laundry, domestic cleaning and so on.
If you will need help, it would be very sensible to have this arranged before any meeting, so you can show people that you have thought about the arrangements you will need to make and have put them in place.
Finally, if it’s condition 3, safety, that is still to be met, aim to ask in advance of any meeting what concerns staff might have about how you will fare at home, and do your best before any meeting to arrange to satisfy these too.
There’s an extra point to make here. Doctors in some hospitals are being encouraged to ask every day: ‘Why can’t this patient go home? Why not today?’ There’s every reason why you should ask exactly that question too. Do so!
11. Don’t worry about being a nuisance
Many people spend their lives not wanting to be a nuisance. ‘I didn’t want to bother the doctor’ is often given as the reason for not going to the surgery earlier with a complaint that subsequently turns out to be serious. As a child, you may have learned that asking a lot of questions at school or home will get you labelled ‘disruptive’.
If you definitely want to go home, and are resisting being kept in hospital, you will probably have to be really determined. Doctors may want to keep you in for more tests, like Mike, ‘to be on the safe side’. If you have close family, they may worry that you won’t regain your former liveliness and will become (more) demanding. So you will have to speak up for yourself.
You may never have done this before. Perhaps you know some argumentative people and don’t like them very much, and don’t want to become like them. Put such qualms aside!
12. Be aware of ‘hospital strategies’ for freeing up beds
If the powers that be think there is nothing more that they can do for you – you are ‘cured’, or ‘healed’, or whatever – they will want you out of your bed, to free it for an incoming patient. If you aren’t able to move back into your own home, or able to afford a room in a private residential home, they will look for a place for you supported by local authority social services in a care home. The person doing this could be a ‘discharge coordinator’.
If there is a shortage of beds or rooms, you may be offered just a single place, no choice of where to go. Now you have a dilemma. Do you accept what you are offered or hold out for something more suited to your preferences, such as somewhere close to where you previously lived?
Being placed in this situation is bound to cause you some anxiety. What can you do?
The first thing to do is to ask what options are available. Being able to make a choice will show you if there is somewhere else that you might prefer. It will also help you get clearer in your own mind what your criteria are for choosing a place. And it may open up the possibility of explaining what’s in your mind to the discharge coordinator and having a reasoned discussion with him or her.
If you aren’t offered any option, be very wary. In particular, do not sign anything! Signing a piece of paper will mean you are agreeing to something, and it may not be immediately apparent what it is that you’re being asked to agree to. Say that you need to think about it. And hold on to the piece of paper, so you can show it to visitors.
If you have family or a close friend, the discharge coordinator may bring them into the discussion. This will introduce further complications, of course. Family members may have their own views about what’s best for you, which could be different from yours, and about whether your needs are likely to become more demanding, and what help they might be in a position to provide for you. So careful negotiation will be called for here.
But bear in mind that the discharge coordinator will have their own agenda. If they are under pressure to free up your bed, they may promise you that a place in a home that you don’t much care for will be only temporary. But remember Jean’s case. She was held in a ‘temporary’ bed for more than three months, a period that ended only when she died. We have to ask: Did ‘parking’ her in this way simply allow staff to turn their attention to the pressing needs of other patients? Once she was out of sight did that mean she was out of mind?
13. The last resort: to get more information, say you want to leave
If, despite your best efforts, you are finding it difficult to get information from the hospital about what lies ahead, you have one more weapon in your locker.
The hospital should have a policy to support adult patients wanting to self-discharge against medical advice. You can make use of this not to help you find yourself suddenly out on the street but to find out what is keeping you in.
It will be the policy of the hospital trust to support both you and the staff members involved. They will want to help you to understand why medical opinion advises a continued hospital stay and understand the possible implications of your decision to ignore medical advice.
The staff involved will be under instructions to try to discover from you what your reasons are for wanting to self-discharge against medical advice. So this is your opportunity to explain the frustrations that you are experiencing.
Describe the delays you have encountered, the promises that have not been fulfilled, the lack of information or the contradictory or erroneous diagnoses or other information you’ve been given. And say how these have left you feeling, and if you think your mental health has been suffering.
Your diary and any other notes that you have kept will be really useful in this situation.
Bear in mind that the consultant or other clinicians in your medical team will have a duty to establish the reasons why you wish to self-discharge and to address any issues that can be resolved at this point. This is your opportunity to give your message loud and clear. You should make sure, by the way, that what you are saying is being recorded.
Ideally you will be able to stay and complete your treatment, and that will happen smoothly and expeditiously. This is, I think, a reasonable expectation for you to have.
14. Advice for family and friends
First of all, please read through this booklet and look for ways in which you can encourage the patient – your friend, let’s say – to help himself or herself. Check that they are getting exercise and mental stimulus, and keeping a diary so they can write down their experiences and thoughts. Encourage them if they seem to be losing hope.
Bear in mind that even though your friend may look tired and depressed, that doesn’t mean they are going irreversibly downhill and will be incapable of looking after themself when they get out. Yes, be realistic, but also optimistic, and share your optimism with them. Make plans for their departure.
Be your friend’s ally. They may have questions about their treatment and prospects but be shy about asking them. So ask their questions for them. And don’t let anyone drive a wedge between them and you. If you are asked to meet with anyone from the hospital or a social worker, say, you might get useful information from doing that, so it could be helpful, but don’t get drawn into withholding information from your friend. That would put you in a very difficult position: you could find yourself becoming a kind of conspirator against them. Your friend must be able to trust you. If they can’t trust you, who can they trust?
And remember that, as mentioned above, if an attempt is being made to persuade your friend to accept a moving-on bed somewhere inconvenient with no alternative offered, that is an indication that they simply want them out of their bed as soon as possible. If you support your friend in staying put until a better offer is made, staff may try to label you uncooperative and make you feel guilty. If your friend is given no option and no reasons, my advice to you both is: stick to your guns!
15. Good luck!
I wish you every success.
And I would be very interested to hear about your experiences. You can email me at peter.levin/@/spr4cornwall.net (without the forward slashes, of course). Messages received will be treated in strict confidence: no details enabling identification of yourself or the hospital concerned will be published without your agreement.
* Sources of patient stories
Mike and Jane: Newton, Why not home? Why not today?, 2017
Jean: NHS Kernow et al, Embrace Care, A Summary of the Diagnostic Findings, July 2019
Ann: Healthwatch Cornwall, Delayed Transfers of Care: What it’s like for patients and families,
Care Quality Commission, What can you expect from a good hospital?, 2016
Department of Health and Social Care, The NHS Constitution for England, October 2015
Newton, Why not home? Why not today?, 2017
NHS Kernow et al, Embrace Care, A Summary of the Diagnostic Findings, July 2019
S Gordon, KA Grimmer & S Barras, Assessment for Incipient Hospital-Acquired Deconditioning in Acute Hospital Settings (Literature Review), Journal of Rehabilitation Medicine, 51(6), 15 March 2019
Department of Health and Social Care, Handbook to the NHS Constitution for England, October 2019
NHS Improvement, Guide to reducing long hospital stays, June 2018
Jane Cummings, ‘We should all support #EndPJparalysis’, NHS England Blog, 23 February 2017
NHS England, Monthly delayed transfers of care Situation Report, November 2018
Royal Cornwall Hospitals NHS Trust, A Policy to Support Adult Patients Wanting to Self-Discharge Against Medical Advice, August 2017