Understanding your cancer care rights

What are my rights as an NHS patient?

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.

What is the NHS constitution?

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, and 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.

What should I expect from the NHS?

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.

What are my rights to GP services?

You have the right to choose your GP practice, and they will accept you unless there are reasonable grounds to refuse you. This usually includes living outside of their catchment area.

If the GP practice refuses to accept you, they must write to tell you their reasons. You can find a local GP on the NHS website. You can change GP practice at any time.

Please note there are many reasons why it might be important to register with your local practice, including emergency appointments when you are sick and your GP having knowledge of what services are available in your local area.

It is important to register with a GP as they are the main point of access to NHS care.

You have the right to ask to see a GP of your choice, and the practice will try to comply with your wishes. This may not always be possible if your GP works part-time or is on annual leave when you book an appointment.

How long should I wait to start cancer treatment?

If you have a new cancer diagnosis

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 before the cancer progresses.

 

A diagram illustrating NHS cancer waiting times across 62 days. It demonstrates what a patient should expect to happen in the first 2 weeks: this includes a GP appointment and being seen by a specialist. In the following 31 days, there should be a diagnosis, decision to treat, then first treatment.
Image: A diagram illustrating NHS cancer waiting times

 

NHS England has set a new target of 28 days from referral to finding out whether you have cancer. This target will apply to you if you were urgently referred to see a specialist through the 2-week urgent referral or the urgent screening programme pathway (this is for breast, bowel or cervical cancer) after April 2020.

If you received a non-urgent referral as your GP did not originally suspect cancer, your wait time should be no more than 18 weeks from the day your appointment was booked, or when the hospital or service received your referral letter.

However, if your GP has any suspicions about a cancer symptom they would usually make an urgent referral.

If you have a recurrence of cancer

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 you have a new primary cancer

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 to diagnose your cancer. Waiting times can vary depending on the type of cancer you have and the type of treatment you are going to have.

Can I choose which hospital I am referred to?

You have the right to make choices about your NHS care. This can include choosing the hospital that provides your care when you're referred for your first appointment with a consultant. You can speak to your GP about where and when you would like to see a specialist.

However, when you are being referred for cancer services you cannot choose which hospital you are referred to as you must be seen within the 2-week maximum waiting time. You can ask to be referred to a different hospital if you have to wait more than 2 weeks before seeing a specialist for suspected cancer.

The waiting time starts from the day the hospital receives the referral letter, or when you book your first appointment through the NHS e-Referral Service.

How should I be involved in decisions about my health?

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 talking to your healthcare team and making decisions about treatment.

Do I have the right to the treatment I want?

You have the right to receive care and treatment that is appropriate to you, meets your needs and reflects your preferences.

Speak to your healthcare team about the treatment you want, and you can make decisions about your care together. They will be able to give you more information about your care and they should support you to fully understand any decisions and choices you make.

What can I do if I can't access the treatment I want?

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 other issues such as separate 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 advisor on 0808 808 00 00, 7 days a week, 8am to 8pm.

Can I get a second opinion?

A second opinion is when you ask a doctor if they agree with your diagnosis or treatment. You can ask your doctor to be referred for a second opinion if you do not agree with them, but you do not have a right to a second opinion.

GP

If you want a second opinion from a GP, you can ask to see another GP at your surgery. Or you could consider changing your GP practice. You can ask your GP to arrange a second opinion either from a specialist or another GP. However, the GP does not have to do this if they do not think it necessary.

If a GP refers you for a second opinion, you cannot insist on seeing a particular doctor. However, you should not be referred to someone you do not wish to see. If the GP refuses to arrange a second opinion, you may wish to change your GP.

Specialist or consultant

There are several ways of getting a second opinion from a hospital consultant or specialist.

Before asking for a second opinion, it’s worth asking your consultant team to go over your diagnosis and explain anything you don’t understand. If you’re unhappy with your diagnosis or would like to consider a different course of treatment, discuss this with them. Your healthcare team will be happy to explain things, and, in many cases, there may be no need for a second opinion.

If you are still unhappy, speak to your GP. They will be able to refer you for a second opinion, either on the NHS or privately. This can allow you to get an independent second opinion. Some people do their own research to find the name of a consultant they think they would like to see.

For funding reasons, your current consultant may not be able to refer you to some specialists. They may recommend talking to your GP about getting a second opinion from another specialist. You may worry that asking for a second opinion will upset your consultant. But this is unlikely to happen. Doctors often ask for the opinion of a colleague, especially for complex cases.

People who are referred for a second opinion are treated as a new patient referral and are assessed appropriately. A second opinion with a different healthcare team may be at a different hospital which could, in some cases, involve additional travelling. Whilst waiting for your second opinion, you may wish to discuss or inform your initial healthcare team about this. If you have a serious medical condition requiring urgent treatment, we advise that you discuss this with the team and ask whether any delay in starting treatment could affect your wellbeing.

For more information about getting a second opinion, please contact our Support Line on 0808 808 00 00, open 7 days a week, 8am‒8pm.

Can I complain about NHS services or staff?

You have the right to be treated with respect and receive good-quality service from the NHS. If you feel you have been treated unfairly, are unhappy with the care or treatment, or something has gone wrong you can make a complaint.

Holistic Needs Assessment

A Holistic Needs Assessment (HNA) identifies any physical, emotional, practical, financial and spiritual concerns you may have from your cancer diagnosis.

An HNA is an assessment and discussion you may have with someone from your healthcare team. Together, you talk through your needs and concerns. HNAs are often done electronically, but there is also the option of a paper form. You will need to speak with your healthcare team for an electronic Holistic Needs Assessment.

You then agree on a plan for your care and support needs, which should lead to referrals to support and services to help meet the needs you have identified. It is called holistic because you can discuss any needs or concerns you have about any area of your life. It is not only about the physical symptoms of cancer or the side effects of treatment.

HNAs may not be standard practice in all hospitals and they may be more informal. However, there is a national government commitment that everyone diagnosed with cancer in England should be offered an HNA. If you are not offered an HNA and would like one, you can ask someone from your healthcare team about it.

For more information about HNAs, see our Holistic Needs Assessment leaflet, and the video below.


If you would like more information about your patient rights, please contact our free Macmillan Support Line on 0808 808 00 00, open 7 days a week, 8am to 8pm.