Caring for Someone Coming Out of Hospital

It can be a very worrying time if you are thinking about caring for someone who is coming out of hospital and who can no longer care for themselves in the same way as before.

You may not have considered yourself a carer until now and so will need to come to terms with a completely new situation - perhaps, for example, bringing home an elderly relative who used to live alone.

Or you may have been caring for someone at home but are now unsure whether you can provide the extra care they will need after their hospital stay.

Here is some information you may find helpful when dealing with this situation:

• Who decides when someone should leave hospital
• What the hospital staff should do when a patient leaves hospital
• How you can help ensure the leaving day is organised properly
• What support can you and the people you care for get after leaving hospital
• What to do if you feel you can't be a carer
• How to make a complaint

Who decides when someone should leave hospital

The doctor in charge of a person's care decides when someone is ready to leave hospital - the hospital staff may talk about 'discharging a patient'.

If a doctor says a patient is ready to leave hospital, it means they are satisfied the patient is well enough to leave hospital as long as any necessary help or support continues to be provided.

Need more help? Guidance on what the discharge plan should contain can be found in the Dept of Health's good practice guide "Hospital Discharge Workbook" available from the Department of Health, PO Box 777, London, SE1 6XH, Fax 01623 724524 or from the Health Literature line 0800 555 777.

What the hospital staff should do when a patient leaves hospital

Once a doctor decides a patient can leave hospital, the hospital staff should take special care of those 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 (e.g. they have been paralysed by a stroke)
• Are terminally ill.

This special care involves making proper plans for a patient's departure (this is called a hospital discharge plan

The plan will include information about what needs to be done to ensure a patient is properly cared for after leaving hospital and who is responsible for providing this care.

How you can help ensure the leaving day is organised properly

Leaving hospital can be a traumatic experience for both the patient and you the carer.

Hospital staff should do a number of things to ensure the leaving day is as stress-free as possible. You can check whether the day is organised properly by looking at the following checklist:

• Has the patient been given at least 24 hours' notice before being discharged?
• Has transport home been arranged if necessary?
• Have any property and valuables been returned to the patient?
• Have any essential equipment or training been supplied?
• Has the patient's GP been told they are being discharged?
• Have any medicines been provided that are needed until the patient sees the GP?
• Has information been given about symptoms to watch out for and where to get help if needed?

You, 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 (e.g. is it clean and tidy? Is it warm enough? Is there any food or milk in the house?)
• If the person is going home alone, making sure someone goes with them and perhaps stays for a few hours or days if necessary
• Making sure there are no hazards in the home (e.g. mats that someone on crutches could slip on).

What support can you and the people you care for get after leaving hospital

The person you care for may need a variety of special support when they come out of hospital. You may also be worried about how well you can cope without help.

It's therefore important to find out exactly what support you can get - remember, it may be your or the person you are caring for's legal right to get some types of help.

Help may be organised (but not always paid for) by the health service or the local authority social services. If not, you may be able to get help free of charge from an organisation such as a charity or self-help group or you may have to pay for it privately.

Social Security Benefit entitlements may be available to help meet the extra costs of care. If the person leaving hospital requires help with personal care or supervision or they have problems with walking and getting around then they may be entitled to a disability benefit. Claiming either Disability Living Allowance or Attendance Allowance could lead to the carer being able to claim Invalid Care Allowance or having some other entitlement. The hospital may have a special department which can advise further on benefits and help with any form filling.

Health services

The NHS has a duty to pay for a range of services that may be needed by the person you care for. This includes:

• Rehabilitation work
• Palliative care - this means providing care which involves the relief of suffering
• Respite care - this means providing care so that the normal carer can have a rest
• Specialist health support.

Some health services are provided by the hospital after a patient has gone home (e.g. home visits from a hospital physiotherapist or speech therapist) but most health care is provided by the local health services.

Depending on a person's need, local health support may be provided by a doctor (called a GP), district nurse, health visitor, physiotherapist, community psychiatric nurse, speech therapist, continence adviser, or a Macmillan or Marie Curie nurse.

Social services

The person you care for may be entitled to receive support from the local social services department.

The kinds of help that might be provided include:

• Practical help at home (e.g. 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 (i.e. someone sits for short periods with the person you care for)
• Community alarm (i.e, an alarm button fitted in the home that links to an emergency service).

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

If the assessment shows the person needs help, the local authority still needs to decide whether or not it can arrange or provide the services that are needed. Unfortunately, if the resources aren't available a service may not be provided, even if the person needs it. Also, some services may be provided for free but others may involve a charge.

Remember that you can also ask to be assessed by social services to see whether you need support as a carer. For further information about carer's assessments

Charities or voluntary organizations

There are lots of charities and voluntary organisations which offer a variety of help, including:

• Information and advice
• Loans and grants
• Holiday schemes
• Counselling and befriending
• Transport.

You may also find that some organisations offer hospital aftercare schemes - this involves providing things like rehabilitation and medical treatment.

Self-help groups

There may be a self-help or support group in your area that you and the person you are caring for may be able to join. You will get to meet people in a similar position to you, get advice and information on problems you are facing, and may even receive direct support.

Private help

Caring for someone or being cared for can be very expensive, so it's important to make sure you get all the free or subsidised help you are entitled to before paying for any private help.

To get private help you can advertise or use an agency that specialises in providing the support you need. Local agencies are listed in the Yellow Pages. Please make sure you check someone's references first - this involves contacting people they have previously worked for to ensure they can do the job properly.

What to do if you feel you can't be a carer

It can be very hard to make a decision not to care for someone or to no longer care for someone when they come out of hospital.

You may think you are letting them down but please try not to feel guilty. Looking after someone is not always easy or satisfying, and caring can be physically, emotionally and financially draining.

If you have been caring for someone for a long time and you now think you can no longer cope, you may find it particularly difficult to come to terms with. You may think that the time has come to consider a residential or nursing home but are not sure you are doing the right thing.

The important thing to remember is that you can continue to care for someone even if you are not looking after them in your own home - it's just that the caring is done in a different way. And you may find that you are able to spend more quality time with them rather than collapsing exhausted at the end of the day.

If you can't care and a person is due to come out of hospital

You may need to make important decisions quickly when the person you are caring for is in hospital, but don't feel pressurised by hospital staff who may make assumptions about the amount of help you can offer. If you need more time to decide, tell the staff. It's better to be realistic than to over-commit yourself and then find you can't manage.

If the hospital staff continue to assume you will care for the person even if you say you can't provide the care that's needed, you can complain or refuse to provide care.

How to make a complaint

It's not always easy to complain but it may be the best thing to do for you and the person you're caring for.

If you're not happy with a hospital's plans for a person coming out of hospital:

• What to do if the person you care for is about to come out of hospital but you don't think they're ready or you don't think you can look after them
• What to do if you're not happy with the decision to send the person you are caring for to a residential or nursing home
• What to do if you are not happy with something else about a hospital's plans for a person coming out of hospital

If you're not happy about the way a person is cared for after leaving hospital:

• What to do if you are not happy with the support provided by the health services after a person leaves hospital
• What to do if you're not happy with the help provided by social services after a person leaves hospital

What to do if the person you care for is about to come out of hospital 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, write to the hospital's General Manager/Chief Executive and ask for a review of the decision to discharge the person you are caring for.

You can also refuse to look after someone when they come out of hospital and so try to force the services to make other arrangements for their care. Or you could ask for the person to stay in hospital until the help you think is needed is provided.

What to do if you're not happy with the decision to send the person you are caring for to a residential or nursing home…

A patient can refuse to be discharged but they do not have the right to stay in hospital indefinitely. If this happens, they must be offered care at home instead. If you are not happy with the care that is offered, you can ask the health authority for the area in which the patient normally lives to review the decision not to provide care at hospital. 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

What to do if you are not happy with something else about a hospital's plans for a person coming out of hospital…

Start by complaining informally to the nurse in charge. If you aren't satisfied with their response, make an appointment to see the consultant. If you're still not happy, phone to make an urgent appointment with the hospital's General Manager/Chief Executive. If you're still not satisfied, write a formal complaint. If you're not happy with the hospital's response, contact the Health Service Ombudsman.

What to do if you are not happy with the support provided by the health services after a person leaves hospital…

Start by talking to the health professional but if you are still not happy, you can complain to the local health authority or your local Community Health Council or local Health Council (Scotland).

What to do if you're not happy with the help provided by social services after a person leaves hospital…

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 your local councillor.

This document was provided by Carers UK. www.carersonline.org.uk