Understanding your cancer care rights

We know that being treated for cancer can be an overwhelming and confusing experience.

This section is designed to make things clearer and help you to understand what you can expect from your cancer care and NHS staff.

It contains some common questions you might have during your cancer journey. If you feel like some of your rights aren’t being met, then you can follow this toolkit to empower you to change this.

The NHS Constitution sets out your rights and responsibilities as a patient. These include:

• free access to health services, except in some situations such as if you’re not a UK resident
• not being unlawfully discriminated against
• being treated with dignity and respect
• being treated by appropriately qualified and experienced staff
• being protected from abuse, neglect, and care and treatment that is degrading
• choosing your GP practice and expressing a preference of doctor within your GP practice
• receiving care and treatment that is appropriate to you
• accessing NHS services within the maximum waiting times
• not having to share sleeping accommodation with patients of the opposite sex when you are admitted to hospital
• receiving suitable and nutritious food and hydration to sustain good health and wellbeing
• receiving information about the test and treatment options available to you, what they involve and their risks and benefits
• being given access to your own health records and to have any factual inaccuracies corrected
• being involved in planning and making decisions about your health and care being able to accept or refuse treatment that is offered to you having access to drugs and treatments that have been recommended by NICE (National Institute for Health and Care Excellence) if your doctor says they are clinically appropriate for you
• receiving care and treatment that is appropriate to you, meets your needs and reflects your preferences being able to complain if you’re unhappy or if things go wrong.

As an NHS patient, you should be:

• treated with dignity and respect and not be abused or neglected
• cared for in a clean, safe, secure, and suitable environment
• treated professionally by qualified and experienced staff and not be unfairly discriminated against.

You can read your full set of rights in the NHS Constitution.

If your GP sends you for an urgent referral for suspected cancer, you should be seen by a specialist within a maximum of 2 weeks of the referral date.

If you are referred to a specialist, you should not have to wait longer than 62 days from the referral before starting treatment. If you are diagnosed with cancer, you should not have to wait more than 31 days from the diagnosis and a decision to start treatment before you have treatment.

Please note that it is important for your healthcare team to make a fully informed decision and cancer waiting times are in place to ensure treatment happens as soon as possible.

In England, the NHS aims to take no longer than 28 days from referral to finding out whether you have cancer. This target applies to you if you had:

• an urgent suspected cancer referral
• a referral to have breast symptoms checked, even if cancer is not suspected 
• an abnormal breast, bowel or cervical screening result and are referred for further tests. 

NHS England has a waiting-time target for cancer that has come back (a recurrence). They say that you should start treatment within 31 days. This time starts from the meeting in which you and your doctor have agreed on your treatment plan.

If your doctor has diagnosed a new primary cancer rather than a recurrence, you should wait no more than 2 months (62 days) to start treatment. This time starts on the date that the hospital has received an urgent referral for suspected cancer.

You might have to wait longer if you need extra tests. Waiting times can vary depending on the type of cancer you have and the type of treatment you are going to have.

You have the right to be involved in planning and making decisions about your health and care with your healthcare team.

You can speak to your healthcare team about being involved in any decisions about your health. This is often referred to as ‘shared decision making’. You should have a conversation about all your concerns and needs, and what matters to you. This can help you to think about what’s important to you when making decisions about your treatment. A tool called a Holistic Needs Assessment or a Concerns Checklist may be used.

You can ask your healthcare team for information and support about the tests and treatments that are available to you, including what they involve and their risks and benefits to you and any side effects on your health. When making these decisions remember you can involve your family and carers.

You can also request to access your medical records to help you better understand your condition, treatments and cancer care. Doctors write to each other about your care. They should aim to send you a copy of their letters or emails. If you do not get a copy, you can ask for one. This can help you make decisions about your care. Please note that you should only request this if absolutely necessary, as accessing records can take a long time.

Your doctors will not be able to give you any treatment until you have given your consent.

We have further information about making decisions about treatment and questions to ask your healthcare team.

You might feel disappointed if you can’t have the treatment you would like. You may find it helpful to talk to your healthcare team. Ask them whether there are other treatments you can have or if you can take part in a clinical trial. You can read more about clinical trials.

It is worth remembering that treatment decisions are complex and are based on the evidence as to what is best for you at your stage of cancer. They also take into account any other medical problems you may have. This may limit your treatment options.

You might be able to talk with other people who have tried to get the same treatment. It can be helpful to share experiences. Ask your specialist whether they can arrange this for you.

Alternatively, the Macmillan Online Community is a place to share your experiences, get and provide emotional support to other people who may have a similar experience.

If you would like advice and support about not receiving the treatment you want, speak to a Macmillan Support Line adviser on 0808 808 00 00, 7 days a week, 8am to 8pm.

Everyone has the right to be treated with respect and receive good-quality service from the NHS. If you have been treated unfairly, are unhappy with the care or treatment, or something has gone wrong you can make a complaint. You can give feedback and complaints anonymously if you do not want to be identified.

The feedback and complaints process is different depending on where you live. You can find out more about how this works and the support available in your area:

• England
• Scotland
• Wales
• Northern Ireland.

You can also talk to someone from your team about your concerns, if it feels safe and comfortable to do so. Sometimes they may not realise that there is a problem. Giving feedback about this may help your team make things right. Many healthcare professionals welcome feedback so they can learn and offer better care.

Whether you decide to make a complaint or not, it is useful to get support. Start by talking to someone you trust. This may be someone close to you or a healthcare professional you know well. You may also find it helpful to contact:

• the Macmillan Support Line
• the Equality Advisory & Support Service (if you live in England, Scotland and Wales)
• the Equality Commission for Northern Ireland (if you live in Northern Ireland) offer information and support about unfair discrimination.