The National Institute for Clinical Excellence (NICE) guidance on supportive and palliative care has been developed closely with people affected by cancer. It makes clear what those involved in delivering care and support should strive to provide, and helps patients with cancer readily understand what it can really mean for them.
About the guidance
The principles are based on a document from the National Institute for Clinical Excellence (NICE) - an organisation set up by the Government to provide the public and health professionals with guidance about the standards of treatment and care the NHS should strive for in England and Wales.
The document, published in Spring 2004, is called: Guidance on Cancer Services: Improving supportive and palliative care for adults with cancer.
As well as the full version, there is a shorter public version, both available from the NICE website: www.nice.org.uk
Or you can call 0870 1555 455, quoting the following reference numbers:
Full guidance - N0474, Shorter version - N0476
The key principles are below, or you can download: Living with cancer: What you can expect from the NHS [PDF, 230 Kb] for a summary.
NICE guidance - key principles
The following text is from Macmillan Cancer Relief's leaflet, Living with cancer: What you can expect from the NHS, which sets out the key principles of the NICE guidance. The leaflet can be downloaded below.
In essence, the new National Institute of Clinical Excellence (NICE) Guidance on living with cancer, means you can expect a good quality of care and support to allow you to live your life the way you want to.
Services should be appropriate and accessible to you, whatever your culture, ethnicity, or disability. You, your family and carers have important skills, knowledge and abilities, so you should be involved in decisions about your care, and the team of people looking after you should listen to your views and act upon them as far as possible.
In particular, NICE means:
You can be involved in decisions
You can always express your views or worries about your treatment and care, and ask as many questions as you like. The health staff caring for you should allow you to do this and support the choices you make, wherever possible. You know more than anyone else about how cancer affects your life, so it is important that your views are taken into account.
You can expect your health team to communicate clearly with you
You should feel confident that the doctors, nurses and other health staff caring for you are honest and sensitive when talking to you, and explain things in a way you understand.
You can expect your health care team to communicate clearly with each other
You should also feel confident that all the health and social care team members are communicating well with each other. You shouldn't have to keep repeating your story unnecessarily, because all of those caring for you should work together and keep each other informed of developments.
You should be told where you can get help and advice
You should be given the name and contact details of a member of your care team who is familiar with your treatments and care, and who you can get in touch with if you need any information or advice.
You should be offered as much information as you want
If you want to know more about your cancer, its treatments, and the support you can get (from self help groups and complementary therapies, for example), the information should be freely available to you. The health staff looking after you should offer it and be happy to discuss it with you. If you do not get the information you need, you are quite entitled to ask.
Your social and practical needs are important
The health staff looking after you should be aware that your needs are not only physical and medical. They should ask you about the kind of practical and social support you may need as well - for example, childcare, cleaning, shopping, or money and benefits advice. They can also put you in touch with people and local organisations who can help.
Your emotional and spiritual needs are also important
Health staff should be aware that some people want emotional and spiritual support, and help you to find it - if that is what you want. Feeling shocked and upset is normal. Talking to other people who have had cancer may help - through self help groups, for example. If you are finding it particularly hard to adjust, you may want support from one of the many types of health professional who specialise in helping people cope with the emotional consequences of cancer.
You should be offered help living with the effects of cancer and its treatment
Some NHS services, known as rehabilitation services, help people manage the effects of cancer and its treatment. These services - provided by people like physiotherapists and dietitians - should be available to people before, during and after treatment. You can ask about the services available to help you live with any changes you are facing.
Your family and other carers are important too
Health and social care staff should ensure that your families and friends are asked about their needs, particularly at crucial times such as diagnosis or bereavement, and get all the emotional and practical support they need. If it isn't offered, you or they are quite entitled to ask.
You should expect a speedy response at times of greatest need
If your needs are changing rapidly because your cancer is getting worse and you are very ill, medical, nursing and social services should respond and adapt quickly to ensure that you maintain the best quality of life. You should feel confident that specialist advice is available 24 hours a day.
Your preferences about where and how you die should be respected
If time is short, the health staff looking after you should find out about your wishes and needs (for example, whether you wish to remain at home or continue with treatment), and act on them - if that is what you want. The wishes of your family and carers should also be taken into account.
You can be involved in making cancer services better
Those who plan NHS cancer services have a responsibility to involve people with cancer, and use their valuable experience and expertise to help improve standards. If you want to do this, you should be supported - for example by being put in touch with your local cancer partnership group or Patient and Public Involvement Forum.
What can I do if these things aren't happening?
These are recommendations that have been set out by NICE, not rights. They have been welcomed by health professionals, and services in the NHS and elsewhere will be expected to make sure they meet them. But this could take time. Achieving these goals depends partly on having enough trained staff. People with cancer can play an important role in ensuring that these changes happen - by being active in their own care, asking questions and being involved in the development of cancer services.
If you have any particular concerns about your own care that you would prefer not to raise with the professionals looking after you, contact the Patient Advice and Liaison Service (PALS) at your hospital/local Trust, or if you live in Wales contact your local Community Health Council.
If you or someone you care for would like to become involved in planning or commenting on cancer services, you can ask a health professional to put you in touch with your local cancer partnership group. Or, you can contact Cancer Voices, an independent network of people affected by cancer who want to have their say in improving cancer services. You can get more information from the Macmillan CancerLine.