How healthcare professionals can help

Health professionals who can help after you have left hospital may include:

  • a district nurse who can arrange all your nursing care such as dressing wounds, injections, taking stitches out, and helping with managing stomas, catheters, central lines or feeding tubes
  • an occupational therapist who can provide equipment or changes to your home
  • social services who can arrange meals, personal care and advice about benefits
  • a palliative care nurse who helps control symptoms caused by cancer such as pain
  • a physiotherapist who can help get you moving and supply aids such as walking frames.

Your GP should also be told about your treatment and given details of your medicines. You will be given advice about who to contact if you have any problems or questions.

Many people may find they also need emotional support after they leave hospital. If you’d like someone to talk to, your nurse or doctor can refer you to a counsellor. There are also many patient support groups across the UK and online. Some charities also provide emotional and practical support.

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 dressing wounds, injections, taking stitches out, and helping with managing stomas, catheters or feeding tubes and central lines. 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:

  • commode
  • special mattress
  • bedpan
  • 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 to make regular visits. They are community nurses, who work in the district nurse team.

These visits will usually be from nurses or healthcare assistants from the same team. They will communicate with each other to make sure they are all up-to-date with your care.


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
  • dressing aids (a grab stick)
  • a raised toilet seat
  • handrails
  • a stair lift
  • bath and shower aids.

If you need any adaptations or equipment, you will be assessed by an OT while you are still in hospital. The OT can also assess whether you need help doing normal activities, such as washing, dressing or making a cup of tea.

They may need to visit your home to assess your needs, or they may be able to do this assessment in the hospital. This may take place either with you, or with your family member or carer. Sometimes they will ask a community-based OT to carry out this assessment once you have been discharged and gone home.

After the assessment, the OT will 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 will be done when you’re home.

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.

Valerie


Social services support

A social worker has responsibility for assessing what practical and social help you need. A social worker may sometimes be called a care manager. While you are in hospital, you may be referred to a hospital social worker, care manager or assessment officer if you need help with:

  • meals
  • personal care such as washing and dressing
  • finances.

The social worker will visit to do a community care assessment. The local authority will then 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 you with services to meet those needs. Help 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
  • holidays
  • 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.


Palliative care

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 go to 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 its treatment. 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 often, overnight. Your district nurse will assess whether you need a Marie Curie nurse and check if a nurse is available to care for you.


Physiotherapy support

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. Sometimes, they may arrange for you to have community physiotherapy if you need it.


Medical support

When you leave hospital, your GP will be contacted. Your GP will be told about your hospital treatment and future care needs, including any medicines you’re taking and any changes to your medication. If you are given a letter to give to your GP, you should make sure they get the letter as soon as possible.

If you’re not given a letter to take with you, your hospital team should have contacted your GP electronically before you were discharged. You may want to check this with your hospital team. You may also get a printed 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. We have a table that you could download and use to keep their contact details.

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.

When you make an appointment to see your GP, mention that you have been in hospital having treatment for cancer. If you are still having chemotherapy or other cancer drugs it’s important to let your GP know.

Medicines

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 are given medicine that you need to continue taking, 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 is important to ask for your repeat prescription before your medicine runs out.

You might be on some drugs longer than others. So you might need more repeat prescriptions of some medicines than others as your symptoms get better.

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.

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, a family member 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.

Your treatment may be in the form of medication that you take on a regular basis. Or you may be prescribed medication to help with side effects.

You can record the details of each of your medications. We have an example medication record that you can download and use.

To find other helpful information like this, you can order our Macmillan Organiser online or by calling us on 0808 808 00 00.


Counselling support

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. Treatment can sometimes make you feel low and moody.

There is specialist help available if you need help coping with difficult emotions. Many people find it easier to talk to someone who is 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 are going through. The nurses in the hospital may be able to give you information about your local support groups. 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.

An image of a young woman sitting using a laptop.

Kiran and the Online Community

Kiran talks about how Macmillan's Online Community gave her emotional support.

Kiran and the Online Community

Kiran talks about how Macmillan's Online Community gave her emotional support.


Dietitians

If you have any problems with your diet, you may be referred to a community dietitian. You might also see a dietitian while you are in hospital who will be able to give you advice for when you go home.

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. Your district nursing team will also be able to help arrange dietary support if you need it.

Preparing meals

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. There are also companies that deliver ready-made meals to your home.

An image of a woman holding a recipe book.

Deanne talks about help from her dietitian

Cancer treatment had a big impact on Deanne's body, but dietitian Michelle worked on a personalised eating plan to help Deanne regain her strength.

Deanne talks about help from her dietitian

Cancer treatment had a big impact on Deanne's body, but dietitian Michelle worked on a personalised eating plan to help Deanne regain her strength.


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:

  • information
  • loans of, and grants for, aids and equipment
  • holiday schemes
  • financial help
  • counselling
  • transport
  • befriending.

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 on 0808 808 00 00.


Continence advice

If you’re having trouble controlling your bladder 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.

National Key Scheme for toilets

This scheme offers disabled people access to around 9,000 locked public toilets across the UK. You can buy a key for £4.50 (including postage and packaging) from Disability Rights UK. Visit the website or call 020 7250 3222.

In Northern Ireland, these keys can also be purchased at any local council office.

Just Can’t Wait toilet card

If you need to go to the toilet more often, or feel that you can’t wait when you do want to go, you can get a card to show to staff in shops, pubs and other places. The card allows you to use their toilets without them asking awkward and embarrassing questions. You can get this card from The Bladder and Bowel Community.

Macmillan toilet card

Macmillan also produces a toilet card. We hope this card helps you get urgent access to a toilet.


Private care

Private nursing is available. However, it is 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.

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