Having information helps you to feel less isolated and to realise that there is often help available to you if you know where to find it. It can reassure you and relieve some of your worry and stress.
Information makes it easier to anticipate some of the challenges you and the person you are caring for might face, so you can be prepared and plan ahead. It helps you to get the right support at the right time.
It helps to have information about the cancer itself, a list of organisations and healthcare professionals who can provide support as well as information on support that may be available to you as a carer.
Information about services
There is a lot of information available about cancer, caring for someone with cancer and organisations that can help.
Ways to access important information:
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Ask the hospital social workers, practice nurse, district nurse, or your general practitioner (GP).
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Carers who provide ‘regular and substantial’ care are entitled to a carer’s assessment from social services. This will look at your ability to continue caring and take into account things like work and other family commitments. Social services can provide help such as breaks from caring as a result of this assessment. To get a carer’s assessment, contact your local social services department.
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Find out if there is a local cancer information and support centre
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Every hospital has a Patient Advice and Liaison Service (PALS) which should be able to direct you to local sources of cancer information.
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Your local hospice may also be a good source of information.
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The internet may be helpful. It’s always important to go to sites where the information is reliable and checked for quality.
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If you would like to find a self help and support group, you can phone the Macmillan CancerLine on freephone 0808 808 2020 for information about groups in your area.
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Always try to follow up the leads you are given – you’ll find there is a lot of information, help and support out there.
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Don’t be put off if you find someone unhelpful when you are looking for information. Keep on asking until you get the answers you need.
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If you want to get involved in influencing cancer services, contact your local user group. You can find out if there is one in your area by contacting the Macmillan CancerLine on freephone 0808 808 2020.
Information on cancer
Having detailed information can help you understand more about the particular cancer you are dealing with. It is important to remember that there are no definitive answers – this is your personal journey, specific to you and the person you are caring for.
Do not be afraid to ask questions and repeat them if you do not understand the answer. This list of important questions has been compiled by people who have experienced a cancer journey, and they may help you on yours.
Information booklets can be very useful. Visit your local information and support centre or phone the Macmillan CancerLine on freephone 0808 808 2020 to find out what’s available.
Again, the internet may be helpful, but it’s important to go to sites where the information is reliable and quality checked.
Many organisations concentrate on a particular type of cancer, such as lung cancer or breast cancer. You can find out about some of these organisations by phoning the Macmillan CancerLine on freephone 0808 808 2020.
As a carer you might want information that the person you are supporting isn’t, and may never be, ready for. Remember to be sensitive to their information needs also.
Other information sources
For more information about groups that support carers see our Cancerbackup website.