If the person you are caring for is in hospital for cancer treatment, help and services will usually be organised before they come home.
The person you are caring for may have a holistic needs assessment. This is a simple set of questions to identify any concerns they may have.
If there are a lot of things to talk about before leaving the hospital, the ward nurses or the person’s key worker may arrange a meeting. They may invite:
- the person with cancer and you as their main carer
- the cancer doctor in charge of their care
- specialist nurses
- an occupational therapist (OT)
- a social worker.
If you are the main carer, you should tell the healthcare team. It is important your opinions are listened to. You should be a part of discussions about discharge and the plans for going home.
Talk to the healthcare team if there is anything you are not happy with. They can refer you to see a social worker who can arrange a carers assessment.
The person you are caring for should have a care plan or discharge information to take home. This should explain their medicines, any special diet they need and where to get more information.
Aids or equipment can help make things easier for the person you are caring for. It can also help make life easier for you as a carer. There are also changes to the home that might help.
Some equipment is provided by the local social services. The NHS also provides some healthcare equipment. A hospital or hospice can also supply equipment before a person goes home.
Occupational therapy assessment
If the person you are caring for might need adaptations or equipment, a hospital occupational therapist (OT) will assess them before they go home. This can help you understand what equipment might help.
The OT can give expert advice on what might be suitable for the person and for your needs. Ask the GP, social worker or district nurse to refer you, or contact your local council for an OT assessment.
You can also buy or hire some types of equipment from:
- your local pharmacy – you can also ask your pharmacist about local suppliers
- medical equipment shops
- voluntary organisations and charities, such as the British Red Cross.
A nurse, OT or physiotherapist will show you how to use equipment safely. They can also tell you where to position or store it.
Some people may be able to get a Macmillan Grant to help pay for equipment.
Types of equipment
Wheelchairs and walking aids
If the person you are caring for has difficulty walking, using a walking stick, walking frame or sometimes a wheelchair can be helpful. The district nurse, an OT or a member of the healthcare team can arrange this.
Beds and chairs
If the person you are caring for needs to spend a lot of time in bed, it is important they are comfortable. The district nurse can arrange:
- a pressure-relieving mattress
- an adjustable bed rest
- blocks to heighten a bed (bed raisers)
- a hospital bed at home.
Ask the person you are caring for what could make them comfortable. They may need to try different sitting or sleeping positions. Using lots of pillows can help. For example, using V-shaped pillows can relieve pressure on the back. If the person has swollen arms or legs (limbs), you can support their limbs on extra pillows to help reduce the swelling. District nurses can usually provide a pressure-relieving cushion.
An OT or physiotherapist can give you advice on the main chair that the person uses. They may be able to provide a more suitable chair, such as a recliner chair.
Commodes, bedpans and urinals
If the person you are caring for needs to use a commode, bedpan or urinal, the district nurse or OT should be able to arrange this. You can also buy these from pharmacies or medical equipment shops.
If the person you are caring for has difficulty having a shower or bath, a bath chair, board or shower stool may help. An OT or physiotherapist can assess their needs. They can talk to you both about what would work best for their situation.
If the person you are caring for has breathing problems, the district nurses or palliative care team can arrange equipment to use at home. This may include an oxygen cylinder or a nebuliser. This gives medicines as a vapour to inhale.
Other types of equipment
There are other, smaller pieces of equipment that could help the person you are caring for. These can include things like:
- 2-handled mugs
- specially adapted cutlery
- grab rails for areas like the bathroom.
Changes to the home
Certain changes to the home can make life easier and more comfortable for the person you are caring for. An occupational therapist (OT) can suggest and arrange small, practical changes to make a home safe, comfortable and easy to live in. This could include putting handrails in the bathroom or moving the bed downstairs.
It is also sometimes possible to make bigger changes. This can involve putting in a toilet or shower downstairs or fitting a stair lift. This can take a few months of planning and involve building work. You and the person you are caring for will need to talk to an OT about any bigger changes to the home. This is to make sure you understand how the change might affect everyday life while it is being made.
If the person you are caring for lives in a council or housing association house or flat, the local authority might pay for the changes.
If they own their home or rent it privately, they may still be able to get some financial help. Ask the OT, social worker or your local social services about this. You should make any claims for financial help before you start any building work.
If the person you are caring for needs more care or is coming home from hospital, you may want to organise their room for them.
Here are some tips:
- Talk to them about which room they would prefer.
- If they have difficulties moving around, try to choose a room that is near a bathroom.
- Try to make sure you can get around both sides of the bed.
- Put a small table next to the bed, so they can keep personal things nearby.
- Ask if there is anything they would like in the room, such as a computer, TV, phone, pictures or photos.
New technologies can help people living with cancer be more independent. They can also help you to feel more reassured. These technologies include the following:
- Personal alarms – by touching a button worn around the neck or wrist, the user can contact a 24-hour emergency response centre for help.
- Telecare – sensors are placed around the home which identify if there is a gas leak or fire, or if the front door is open. They send an alert to someone in a monitoring centre.
- Telehealth – this can send information from equipment, such as heart or blood pressure monitors, to someone in a monitoring centre. They can then give the information to the person’s GP or healthcare team. This can help check conditions such as asthma, heart failure, diabetes and high blood pressure.
You can find out more about Telehealth and Telecare on the Carers UK website.
There are also mobile apps to help carers. My Organiser is a free Macmillan app that helps you plan and record things. This includes appointment times, contact details and when to take medicines. Search for ‘My Organiser’ on the Apple App Store or Google Play on your phone.
Jointly is an app that can help you be organised and feel supported as a carer.