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Coming out of hospital

Introduction

This section is about hospital discharge - when someone comes out of hospital. Leaving hospital can be a difficult experience, especially if the hospital stay has been a long one or the person leaving hospital is unable to function as they did before, either physically or mentally. It can be a difficult time for carers too.


You may not really have considered yourself a carer until now but might be trying to adjust to a completely new situation, perhaps bringing home with you an elderly relative who used to live alone. Or you may have been managing to care for someone at home until now but be unsure whether you can provide the extra care they will need after their hospital stay.


This section will help you find out what your rights are, what help you might be able to get and how to get it. It looks at:

  • hospital discharge planning

  • the NHS’s responsibilities for long-term care
  • the day someone leaves hospital
  • getting help
  • if you feel you cannot care
  • how to complain.

If you are not sure about your situation, you can get information and advice from the Carers National Association CarersLine on 0345 573 369, or:

  • a disablement association
  • an Age Concern branch
  • a carers’ project
  • your local community health council (local health council in Scotland or district committee for health and  personal social services in Northern Ireland).

These should all be listed in the phone book. If you can’t find the phone number ask at your local library or council offices.

In Scotland, social services are run by social work departments. In Northern Ireland they are run by Health and Social Services Trusts.

Hospital discharge planning

When someone is discharged from hospital it means that the doctor in charge of their care is satisfied that they are well enough to leave hospital, providing they have any support or help they need. What happens to them after they leave hospital, ie where they go and what help they get (if any), should be planned while they are still in hospital as part of hospital discharge planning.

A hospital discharge plan should include:

  • the name of a specific member of staff at the hospital who is responsible for checking that the patient is discharged properly.

  • details of any support, help, equipment or adaptations which are to be set up before discharge and information about who is responsible for rheir provision.
  • details of any contacts to be made to the community health services, e.g. GP, district
    nurse, social worker.

 Hospitals are meant to take special care when discharging patients who:

  • live alone
  • are frail or elderly
  • live with an elderly carer
  • have a serious illness or a continuing disability
  • have a mental illness
  • are in need of special help, e.g. they are incontinent 
  • have communication difficulties eg they have been paralysed by a stroke
  • are terminally ill. 

Many hospitals have made great efforts to improve the way in which they discharge patients but there are still occasions when they aren’t up to standard. If you are not happy with the way in which the person you care for is discharged, you can complain.

The NHS’s responsibilities

Since the introduction of care in the community, many things that used to be provided through the NHS are now provided through social services.* As a result, some people have been discharged from long-stay hospital wards (which are free as part of the NHS) to private nursing homes (which they have to pay for themselves). A complaint about this to the Health Service Ombudsman led to a review of the NHS’s responsibilities for long-term care and as a result, guidelines on hospital discharge were issued in April 1996. The NHS’s responsibilities are summarised below.

The NHS has a duty to fund a range of services including:

  • rehabilitation and palliative (relieving but not curing) care;
  • in-patient care under specialist supervision in a hospital or nursing home for people who need it because:
    • they have complex or intensive health care needs
    • they need to use specialist health care equipment under the supervision of specialist NHS staff;
    • they have a rapidly degenerating or unstable condition requiring specialist medical or nursing supervision.
  • respite care, particularly for people:
    • who have complex or intensive health care needs and require specialist nursing or medial supervision or assessment during respite care;
    • who could benefit from active rehabilitation;
    • receiving palliative care in their own homes but who are in need of respite.


Health authorities must develop guidance on eligibility including:

  • the criteria to be used to decide whether or not a patient will get NHS-funded care
  • the range, type, location and level of services which will be funded.

When discharging a patient from hospital, the consultant must consider how best to meet a patient’s needs, in conjunction with others involved in the patient’s care. In particular, they should decide whether NHS-funded care is warranted according to the responsibilities listed above and the health authority’s guidance on eligibility.

If you feel that the hospital is not fulfilling its NHS responsibilities, you can complain. The local community health council can help.

* In Scotland, social services are run by social work departments. In Northern Ireland they are run by Health and Social Services Trusts.

Leaving hospital

On the day

Leaving hospital can be traumatic, especially if the person you care for has been in hospital for a long time or has been seriously ill.

What the hospital should do

There a number of things the hospital staff should do on the day to make sure a patient is discharged properly and that the discharge goes smoothly. You might like to use this checklist to make sure your relative or the person you care for is discharged properly. If you are not happy with the day of discharge, you can complain.

Checklist for the day of discharge

1. Has your relative been given at least 24 hours’ notice before being discharged?
2. Has transport home been arranged if necessary?
3. Have any property and valuables been returned to the patient?
4. Have any essential equipment, training or fitting been supplied?
5. Has your relative’s GP been told that they are being discharged?
6. Have any medicines needed until the relative sees the GP been supplied?
7. Has information about symptoms to watch out for and where to get help if needed been provided?

You or other family members or friends can also help the day go smoothly by:

  • Bringing some outdoor clothes to the hospital if necessary.
  • Providing or arranging transport if this is not being organised by the hospital.
  • Making sure the person’s home is in order if they’re going home eg is it clean and tidy? is it warm enough? isthere any food in the house? is there any milk?
  • If the person is going home alone, making sure someone goes with them and perhaps stays with them for a few hours or days if necessary
  • Making sure there are no new hazards in the home, eg mats that someone on crutches could slip on.

 

Getting help

There are a number of different types of help the person you are caring for might need when they come out of hospital. These might be organised (but not always paid for) by the health service or the local authority social services.* If not, you might be able to get help free of charge from a voluntary organisation, charity or self-help group or you might have to pay for it privately.

* In Scotland, social services are run by social work departments. In Northern Ireland they are run by Health and Social Services Trusts.

Health services

Some health services are provided by the hospital when a patient is discharged eg home visits from a hospital physiotherapist or speech therapist. But most health care is provided by the community or primary (local) health services.


The main people providing help are listed below:

  • GP- the GP (family doctor) should be informed by the hospital that the person you are caring for is coming out of hospital. They can arrange other kinds of community health care if needed. If the person you are caring for is staying with you temporarily they can register with a local GP for up to three months and still remain registered with their own GP.
  • District nurse - a district nurse might visit to change dressings or give injections. They might also be able to arrange equipment such as bedpans or a commode.
  • Health visitor - a health visitor might visit to give advice and information on coping with day-to-day problems when the person you are caring for comes out of hospital.
  • Physiotherapist, community psychiatric nurse, speech therapist, continence adviser, Macmillan or Marie Curie nurse - ask the GP if you think the person you are caring for needs to see any of these people when they come out of hospital.

If you’re not happy

If you’re not happy with the community health services provided, you can complain. Start by talking to the GP or district nurse. They may be able to arrange for extra help. If you still aren’t happy, you can complain to the District Health Authority or the Family Health Services Authority. These are both listed in the phone book. You might want to get advice from the community health council.

Social services*

The kinds of help that might be provided by social services include:

  • practical help at home, eg cleaning, shopping, bathing and toileting 

  • disability support aids and equipment
  • adaptations to the home
  • provision of meals at home or elsewhere
  • residential care
  • sitting services
  • community alarm.

Some of these might be free but others will have to be paid for at least in part by the person you are caring for.

Getting an assessment

If the person you are caring for needs help from social services* when they come out of hospital, a hospital social worker or someone from the local social services department should visit them to make an assessment of their needs. If you think the person you are caring for should have an assessment and no one has suggested it, contact the hospital social worker or the local social services department* and ask for one. The telephone number of the local social services department will be listed in the telephone book under the name of your local authority.

Once someone has been assessed as needing help, the local authority decides whether or not it can arrange or provide the services the person has been assessed as needing.

The help offered will depend on how much money the local authority has to spend and how it has set its priorities. Unfortunately, if the resources aren’t available a service might not be provided, even if the person you are caring for has been assessed as needing it.

* In Scotland, social services are run by social work departments. In Northern Ireland they are run by Health and Social Services Trusts.

Being assessed as a carer

You can be assessed separately as a carer to determine whether or not you need support and help in order to be able to continue to care. (You might also be entitled to benefits - contact CNA’s CarersLine, a Citizen’s Advice Bureau or a Welfare Rights Unit to find out.)

If you’re not happy

If you’re not happy with the help provided by social services, you can complain. All local authorities must have a complaints procedure. Contact the social services department* and ask to speak to the person who deals with complaints. If you don’t get anywhere, write to the Director of Social Services or contact a local councillor.

Voluntary organisations or charities 

Different voluntary organisations offer different kinds of help, including:

  • information and advice
  • loans and grants
  • holiday schemes
  • counselling and befriending
  • transport
  • in some areas there are hospital aftercare schemes.

Self-help groups

There might be a local self-help or support group which you or the person you are caring for can join. Some groups are concerned with specific illnesses or disabilities while others are for carers. They will be able to give you advice and information about where to get help and may even be able to provide some help themselves, eg a sitting service.

To find out about voluntary organisations and self-help groups, contact CNA’s CarersLine on 0345 573 369 (Monday-Friday l0am-midday and 2pm-4pm).

Private help

Make sure you are getting all the free or subsidised help you are entitled to before you pay for any private help. To get private help you can advertise or use an agency. Local agencies are listed in the Yellow Pages. Make sure you get good references.

* In Scotland, social services are run by social work departments. In Northern Ireland they are run  by Health and Social Services Trusts.

If you feel that you cannot care

If you have thought about the possibility of caring for someone when they come out of hospital and you have decided that you can’t do it, or that you can’t do it any longer, try not to feel guilty. Looking after someone is not always easy or satisfying, and caring can be physically, emotionally and financially draining.If your relationship with the person coming out of hospital has always been difficult it is unlikely to get better because you have started caring for them. It is unrealistic to expect a poor relationship to improve because you are spending more time together. If anything, the strain of looking after someone, especially if they are ill or in pain, is likely to make matters worse.

If you have been caring for someone for some time and you are now thinking that you can no longer cope, it may be difficult to come to terms with this. You may be thinking that the time has come to consider a residential or nursing home but are not convinced that you are doing the right thing. The important thing to remember is that you are not giving up caring by doing this. You will still be a carer but in a different way. And you may find that you are able to do more for the person in terms of spending quality time with them rather than collapsing exhausted at the end of the day.

If you can’t care and discharge is imminent

Important decisions may have to be made quickly when the person you are caring for is in hospital. You may be put on the spot by hospital staff who may make assumptions about the amount of help that you can offer. Ask for more time. Try not to feel pressurised into agreeing to anything you are not happy with. It’s better to be realistic than to over-commit yourself and then find that you can’t manage. If the discharge process continues despite the fact that you have said you can’t provide the care needed, you can complain or refuse.

How to complain

If you’re not happy with the hospital’s discharge planning for the person you are caring for you can complain. You might want to get advice first from CNA’s CarersLine or your local community health council. You might also be able to get support from your MP.

1. If the person you care for is about to be discharged but you don’t think they’re ready or you don’t think you can look after them, start by telling the nurse in charge. If you don’t get anywhere and the discharge process continues as before, write to the General Manager/Chief Executive and ask for a review of the decision to discharge. You can also refuse to look after someone when they come out of hospital and in this way try to oblige the services to make alternative arrangements. Or you could try increasing pressure to keep the person in hospital until the help you think is needed is provided.

2. If you’re not happy with the hospital’s decision to discharge the person you are caring for into a residential or nursing home, they can refuse to be discharged. However, if they do this, they lose the right to occupy an NHS bed indefinitely. If this happens, they must be offered a package of care at home instead `within the options and resources available’. If you are not happy with what is offered, you can ask the heath authority in which the patient is normally resident to review the decision not to provide NHS in-patient care. The health authority will usually seek advice from an advisory panel which will recommend what action should be taken, unless it is clear that the patient’s needs fall well outside the criteria for in-patient care. If the health authority is asked to review a decision it should give an explanation to the patient within two weeks. If you are not satisfied with the outcome, contact the Health Service Ombudsman.

 
3. If the complaint is about another aspect of hospital discharge:

  • Start by complaining informally to the nurse in charge.
  • If you don’t get a satisfactory response, make an appointment to see the consultant.
  • If you’re still not happy, phone to make an urgent appointment with the General Manager/Chief Executive of the hospital
  • If you are still not satisfied, write to make a formal complaint
  • If you’re not happy with the hospital’s response, contact the Health Service Ombudsman at one of these addresses:

England 
11th floor
Millbank Tower
Millbank
London SW1P 4QP

Tel 0171 267 2035

Wales 
Pearl Assurance House
Greyfriars Road
Cardiff CF1 3AG

Tel 01222 394 621

Scotland 
Ground floor
1 Atholl Place
Edinburgh EH3 8HP

Tel 0131 225 7465

Northern Ireland 
Office for Northern Ireland
Commissioner for Complaints
33 Wellington Place
Belfast BT1 6HN

Tel 01232 233821 
 

Carers National Association

If you’re looking after a sick, disabled or elderly relative or friend, you’ll find Carers National Association (CNA) can help you.

Giving you the information you need

We believe that all carers have a right to the best information possible. That’s why our CarersLine is staffed by leading experts in carers’ rights. They answer over 20,000 enquiries a year. A quarter of these calls are from carers who learn about benefits they didn’t even know they were entitled to.

Offering you the support you want

Other carers are in a good position to offer information and support. Carers National Association can put you in touch with your nearest CNA branch or local support group. We also have offices in different parts of the UK which can tell you about the carer support services in your area.

Working to give you a better deal

Perhaps you want to know what is being done by Carers National Association to win a better deal for carers. Here at CNA we campaign on behalf of all carers. And we’ve had our successes too. As recently as 1996 CNA campaigned for the Carers Act which gave carers legal recognition for the first time. We’re now working to make sure it brings real improvements to carers’ lives. And we know much more needs to be done.

Join CNA

By joining Carers National Association you will be joining the carers’ movement and helping us to speak with a stronger voice.

Carers association