Going home from hospital
Many people with cancer who go into hospital need support when they go home (are discharged).
If you need practical help, equipment at home or nursing care, there are many people who can help you and your family.
We also have information and advice for carers of people with cancer.
We’ve included some comments from health professionals and people who have been discharged after a stay in hospital, which you might find helpful. Some are taken from the website Healthtalk and others are from our online community. Some names have been changed.
What type of support am I likely to need?Back to top
The type of support needed will vary from person to person. You may need help with some or all of the following:
- personal care - bathing, dressing and going to the toilet
- domestic chores - cooking, cleaning and shopping
- home adaptations and equipment - a raised toilet seat, shower seat, hand rails, pressure-relieving cushions or a stair lift
- healthcare - help with dressing wounds, injections, medication or specialist support for controlling symptoms
- emotional care - companionship or counselling.
You should only be discharged from hospital when:
- your doctors are happy that you are well enough to go home
- you have had an assessment to look at the support you may need
- you have been given a written discharge plan of the support that you’ll get
- the support described in the discharge plan has been put in place so you can safely manage at home.
The doctors and nurses will tell you when you are likely to be ready to go home. This is known as your expected date of discharge (EDD). This date will be reviewed regularly. You will be told if the date has to change because of your condition or because there is a delay organising the help you need.
Your hospital will have its own discharge policy and arrangements for discharging people. The policy should follow government guidance. You can get a copy of their policy from the ward staff.
You may go to the home of a relative or friend when you first leave hospital. The information here still applies in this situation.
How is care and support arranged for me?Back to top
If you are worried about how you’ll manage at home, tell the nurses or your keyworker as soon as possible. This will help them plan for your discharge. A keyworker is a healthcare professional – often a nurse – who is your main contact and source of support during your stay in hospital.
There are no questions that you can’t ask a keyworker. Nothing is too big, too small or too silly – that’s what they are there for.
Michael, Clinical Nurse Specialist
If your admission to hospital has been planned in advance, you should be given information about discharge planning before you are admitted. A clinic appointment (if you have one) before your admission to hospital is a good time to discuss any concerns you have about going home again.
Discharge planning can mean that you see lots of different health and social care professionals. It may be difficult to remember who each person is and what they do. If you forget any details, it’s fine to ask for them again.
It can take several days to plan a discharge, especially if a number of different services need to be arranged.
Who arranges your discharge?
Usually a ward nurse or your keyworker will make the plans for you to go home. Ward nurses work as a team, so it may not be the same nurse every day. If needed, the nurse or keyworker will involve other healthcare professionals.
Once you get home, you may need ongoing care and support from different organisations and healthcare professionals. If you do, a liaison nurse, nurse discharge coordinator or assessment officer will manage the arrangements.
It can take several days to plan a discharge, especially if a number of different services need to be arranged.
Planning the care you need
The care that’s planned for you will depend on your needs. It’s important that you and your relatives or carers are involved as much as possible in these plans.
When I came home, that was the terrifying part. You miss the all-round support that you get. But they did say to me “If you have any worries, just ring us.”
While you’re in hospital, the healthcare team looking after you will ask you questions so they can assess your needs and find out what support you may need when you go home.
Your views and concerns are important, and you will be encouraged to be involved in the assessment.
You will be asked for your permission (consent) before the assessment takes place. You’ll also be asked if the information can be shared with other healthcare professionals and organisations.
Questions you may be asked include:
- Do you have someone who can take you home from hospital?
- Do you live alone?
- Do you have relatives or friends who can help you when you get home?
- Can you manage steps or stairs?
- How do you manage with personal care, such as bathing and washing?
- Can you prepare your own meals?
- Do you need any financial support?
- Do you have any pets that need looking after?
If you don’t understand or speak English very well, the hospital can arrange for an interpreter to be there when you meet the healthcare team. You may want to bring someone with you to speak on your behalf or translate any conversations.
You should also tell them if you have any speech, sight or hearing problems. You can ask your doctors or nurses to write things down for you, or you can ask for information in large print.
After the assessment, the healthcare team will make a plan for your discharge. This is often called a discharge plan. It will include:
- the name of the person who is coordinating the plan
- details of the treatment and support you will get when you go home
- names and contact details of who will provide the support
- details of when, and how often, the support will be provided
- the name of the person to contact if there’s an emergency or if things don’t happen as they should.
The discharge plan should be reviewed regularly to make sure that your needs are being met.
Involving your carers
If you have relatives or carers who will be involved in your care, it’s important that they’re also involved in the needs assessment and discharge planning. Caring can be hard work, both physically and emotionally, and your carers may need help to support them in their caring role when you go home.
People sometimes feel guilty about being a burden to their relatives or friends. But remember that support from other services means your carers will have the help they need to care for you.
We have more information about going home from hospital specifically for carers.
Which different professionals will be involved?Back to top
District nursing care
District nurses work closely with GPs and can make regular visits to patients and their families at home. They provide help, advice and support with the practical aspects of nursing care. This includes things such as dressing wounds, injections, taking stitches out, and helping with managing stomas, catheters or feeding tubes.
Not everyone will need this type of help. If you’re fit enough to attend your GP surgery to see a practice nurse, for example to have stitches taken out, you won’t need a district nurse visit.
District nurses can also arrange for special equipment to be delivered, such as a:
- special mattress
- hoist or sling
- hospital bed.
They can assess your care needs when you’re at home and refer you for help from other healthcare professionals, if it’s needed. In some areas, district nurses can visit in the evening and at night.
If you need district nursing support, your ward nurse or keyworker will contact your local district nursing service before you go home to arrange a home visit. The first home visit you have will often be from a district nursing manager, who has overall responsibility for the nursing help you are given. They will talk to you about the care that will be provided. They may also talk to your hospital nurse or keyworker so that they understand more about your needs. After that, the district nurse will usually organise for other nurses called community nurses, who work in the district nurse team, to make regular visits. You will usually see the same one or two nurses each time.
Occupational therapy support
Occupational therapists (OTs) mainly offer practical solutions to make your home safe, comfortable and easy to live in. They help people who have difficulty moving around or doing everyday tasks such as dressing, washing or cooking.
You may need advice about adaptations to your home or extra equipment that will make life easier for you. These may include:
- a shower seat
- a raised toilet seat
- a stair lift.
When I was first diagnosed with cancer and my OT came to my home, it was like someone waving a magic wand. Within weeks all sorts of things had been installed.
If you need these adaptations or equipment, you’ll be assessed by an OT while you’re still in hospital. They may need to visit your home to assess your needs. This may take place either with you or with your relative or carer. Sometimes they will ask a community-based OT to carry out this assessment.
After the assessment, they’ll arrange any equipment you need for when you go home. Any adaptations you may need to your home can sometimes take a while to put in place. As long as it’s safe for you to go home without the adaptations, you may be discharged on the basis that they’ll be done when you’re home.
Social services support
A social worker (sometimes called a care manager) has responsibility for assessing what practical and social help you need. While you’re in hospital, you may be referred to a hospital social worker, care manager or assessment officer if you need help with:
- personal care such as washing and dressing
- finances such as benefits.
The social worker will visit and do a community care assessment. Then, the local authority will decide if they will provide or arrange the services. Each local authority has its own eligibility criteria, so the services that are provided will vary from area to area.
If the local authority agrees that your needs are high, it has a duty to provide services to meet those needs. Services that can be provided by social services or arranged with other organisations such as charities, include:
- meals on wheels
- home care (home-helps and personal care assistants)
- sitting service (someone to sit with you while your carers have some time for themselves)
- equipment and adaptations to your home
- benefits advice
- laundry service
- respite care.
Some services will be paid for by the NHS, so they will be free of charge. In other cases, social services will do a financial assessment to see whether you will have to make any financial contribution.
You may need specialist help with some of the symptoms caused by your cancer, such as pain. Your hospital doctor, nurse or keyworker can refer you to a community specialist palliative care team. These teams are often linked to local hospices and have palliative care nurses who can visit you at home. The nurses are experienced at assessing and controlling the symptoms of cancer. They can also provide emotional support for you and your family and carers.
Depending on your needs, your community palliative care nurse can also arrange for you to attend a day centre if your local hospice has one.
In some areas, palliative care nurses are known as Macmillan nurses. However, many Macmillan professionals are nurses who have specialist knowledge in a particular type of cancer, and they often work in the hospital rather than visiting someone at home.
Other nurses who can care for you at home are Marie Curie nurses. They help care for people who are no longer having active treatment and want to stay in their own homes. They can provide nursing care during the day and, more usually, overnight. Your district nurse will assess whether you need a Marie Curie nurse and check if a nurse is available to care for you.
If you have problems getting around while you’re in hospital, you’ll be referred to a physiotherapist. The physiotherapist will assess your needs and work with you to improve your mobility before you go home. If you need to have mobility aids (such as a walking frame) when you go home, they can also arrange this.
If your physiotherapist feels that you will still need physiotherapy when you go home, they can arrange an outpatient appointment for you to see them at the hospital. Occasionally, they may arrange for you to have community physiotherapy if you need it.
When you leave hospital, you should be given a letter to give to your GP. This will tell your GP about your hospital treatment and future care needs, including any medicines you’re taking and any changes to your medication. You should make sure your GP gets this letter as soon as you can. If you’re not given a letter to take with you, your hospital team should have contacted your GP before you were discharged. You may want to check this with your hospital team. You should also get a copy of this letter.
Before you leave hospital, you should be given telephone numbers for your hospital team in case you need to contact them. If you need ongoing medical support or advice, you may be asked to phone the hospital or make an appointment to see your GP. It’s important to follow this advice.
If you need any medicines when you go home, your hospital doctors will arrange for you to have a 1–2 week supply. If you’re given medicine that you need to continue taking, you’ll need to ask your GP for a repeat prescription.
Most medicines are given as a repeat prescription by your GP, but some drugs, such as chemotherapy drugs, may only be prescribed by your hospital doctors. GP surgeries may require up to 48 hours’ notice for repeat prescriptions, so it’s important to ask for your repeat prescription before your medicine runs out.
If you struggle to remember what drugs to take and what time of the day to take them, you may find it easier to use a pill organiser or to have your medicines dispensed in a calendar blister pack:
- Pill organisers (dosette boxes) have compartments for the day and time when your medicines should be taken. They can be bought from most pharmacies. You or a relative or friend will need to fill the pill organiser with your medicines.
- Calendar blister packs come pre-prepared by the pharmacy and include the day and time when the medicine should be taken on the pack.
Talk to your hospital team if you think that a pill organiser or calendar blister pack will be helpful for you when you go home.
Prescriptions are free in Northern Ireland, Scotland and Wales. If you live in England and are having treatment for cancer or the effects of cancer, you are eligible for free prescriptions. To apply for free prescriptions, you will need to ask your GP to fill in a form (form FP92A), which you can collect from your GP surgery or oncology clinic. We have information about prescription charges in our Help with health costs section.
What other support is available?Back to top
Some people need emotional support as well as practical help when they go home. The impact of cancer can lead to depression, feelings of helplessness and anxiety. We have information about the emotional effects. There is specialist help available if you need help coping with difficult emotions. Many people find it easier to talk to someone who’s not directly involved with their illness.
If you’d like to be referred to a counsellor, speak to your nurse or doctor about this before you go home. They can arrange for you to be referred to a doctor, counsellor or social worker who specialises in the emotional problems that affect people with cancer.
Patient support groups
After being discharged from hospital, some people find it helpful to talk to others who have been in a similar situation. Joining a support group for people affected by cancer can give you or your carers the chance to talk to others who can understand what you’re going through. For more information about support groups, call our cancer support specialists free on 0808 808 00 00.
You may want to join an online support group or chat room for people affected by cancer. On our online community you can chat to people in our chat rooms, talk about your experiences, share your thoughts and feelings, make friends and join support groups.
If you have any problems with your diet, you may be referred to a community dietitian. Qualified dietitians are experts in assessing the food needs of people who are ill. They can review your diet and take into account any specialist dietary requirements you may have. They can give you advice on which foods are best for you, and also whether any food supplements would be helpful.
Some people may need help to prepare their meals. Your family or carers may be able to help, or you can talk to social services about meals on wheels. There are also companies that deliver ready-made meals to your home.
Voluntary services and charities
Voluntary organisations and charities play an important role in providing help and support to people at home, and their carers. They offer various types of help, including:
- loans of, and grants for, aids and equipment
- holiday schemes
- financial help
Your nurse or keyworker should be able to tell you about local voluntary organisations and charities. You can also get information from our cancer support specialists.
If you’re having trouble controlling your bladder and/or bowels (incontinence), it can be emotionally and practically difficult.
Your district nurse will be able to help you and may suggest that a continence adviser visits you. This is a specialist nurse who can give advice and information about aids and equipment to help you cope with continence problems.
Private nursing is available. However, it’s very expensive and may only be practical as a short-term solution.
There are many private nursing agencies that can supply qualified nurses to come to your home. Try to use an agency that has been recommended to you. Or you can ask social services or a carers’ or cancer support group for advice. The British Nursing Association can also provide you with information.
Your local phone books will list agencies under the heading ‘Nursing Agencies’ or you can search online.
Your discharge checklistBack to top
Before you go home, you may find it helpful to check the following:
- Do your family and carers know when you are going home? Can someone take you home? Or has your hospital transport been arranged?
- Will there be someone to meet you when you get home?
- Or do you have keys to get in?
- Will there be food in the house? Will the heating be on (if needed)?
- Do you understand how to take any drugs or dietary supplements you need to take at home?
- Do you know when your next outpatient appointment is?
- Do you know what care has been arranged for you when you go home and how to contact everyone?
- Do you have a contact number for your hospital team?
- Do you have all the equipment/supplies you need to use at home, such as continence pads or stoma bags?
- Has your GP been told about your discharge?
- Have you been given a letter summarising your care in hospital?
- Have you been given a statement of fitness for work (previously known as a sick certificate), if you need one?
We’ve listed a sample of the sources used in this section below. If you’d like further information about the sources we use, please contact us at firstname.lastname@example.org
- Coming out of hospital. November 2012. Carers UK.
- NHS Choices. Hospital discharge and carers (accessed October 2013).
- Ready to go? Planning the discharge and the transfer of patients from hospital and intermediate care. February 2010. Department of Health.
- NI Direct. Leaving hospital (accessed October 2013).
- Factsheet 37: Hospital discharge arrangements. February 2013. Age UK.
- Leaving hospital: a guide to discharge planning for relatives and carers. 2010. NHS Lothian.
- Lees L. Exploring the principles of best practice discharge to ensure patient involvement. 29 June 2010. Nursing Times. Volume 106: No 25.
With thanks to: Dr Tim Anstiss, Visiting Research Fellow; Dr Charles Campion-Smith, GP and Macmillan Medical Adviser; Pauline McCulloch, Colorectal Lead Nurse; and Heather Nicklin, Macmillan Specialist Palliative Care Social Worker.
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