Understanding your rights as an older person

Your age should not stop you from being offered many of the available treatments for cancer. If your doctor does not recommend a particular treatment, it should be because it is unlikely to be helpful and not because of your age.

Some things, such as your general health, can affect how well certain cancer treatments work. When planning your treatment, your doctor should consider your particular situation. This includes your general health, your biological age (how well your body is working) and any health conditions you have. You should be treated with dignity and respect.

If you’re unable to make decisions about your treatment, your doctor will be responsible for your care. It’s hard to know if this will happen or not. In case it does, you can write down the type of treatments you would refuse (this is usually called an Advanced Decision to Refuse Treatment). Or you may be able to set up a Lasting Power of Attorney (where you give someone power to make decisions on your behalf).

If you’re unhappy with your treatment and care, you have the right to ask for a second opinion or to make a complaint.

Treatment for older people

The aim of cancer treatment is either to cure the cancer, or to control it and relieve its symptoms.

Treatments can include:

  • surgery
  • radiotherapy
  • chemotherapy
  • hormonal therapy
  • targeted treatments (that target specific molecules within cancer cells).

It’s important to discuss your treatment options and what it may involve, for example, where you will have treatment. Cancer treatment does not always mean staying in hospital – it may mean visiting a hospital regularly but not staying.

Some people find that learning more about their treatment helps them feel prepared. It can also allow you to plan ahead to ask about how you are likely to feel during and after treatment. If you look after someone who is ill (if you are a carer), asking questions can help you anticipate any extra help that you and the person who is ill might need during and after your treatment.


Research – clinical trials

Cancer research trials are carried out to try to find new and better treatments for cancer. Trials that are carried out on patients are known as clinical trials.

Trials are the only reliable way to find out if a different type of surgery, chemotherapy, hormone therapy, radiotherapy or other treatment is better than what is available already.

You may be asked to take part in a research trial. If you choose to take part, you will be carefully monitored during and after the study. If you decide not to take part, your decision will be respected and you won’t have to give a reason. There will be no change in the way you’re treated by the hospital staff, and you’ll be offered the standard treatment for your situation.


Access to treatment and your rights

Your age should not stop you from being offered many of the available treatments for cancer.

Some recent research funded by Macmillan suggests that:

  • the outcomes of cancer treatment for older people are similar to the outcomes for younger people 
  • older people who are relatively fit can safely tolerate cancer treatment 
  • it’s more common for older people to stop taking treatments, or for their treatment doses to be modified. 

Some types of treatment, particularly certain chemotherapy drugs, are effective in younger people but are not suitable for some older people. The side effects of some treatments may be more severe if you have other health problems and are taking other medicines.

If your doctor does not recommend a particular treatment, it may be because it is unlikely to be helpful or because they believe the side effects will be too severe.

If you have other health conditions, for example lung or kidney disease, it may prevent you from being offered certain types of treatment.

If this is the case, your doctor should explain the range of treatments that are available and why particular treatments may not be effective.

You may also want to ask how any other conditions you have are being taken into account, and how they can be managed if you have the proposed cancer treatment.

Like all patients, you have the right to:

  • be treated with dignity and respect  
  • see your medical records 
  • be given information about any proposed treatment, including its aims and side effects 
  • expect confidentiality 
  • ask for a second opinion 
  • refuse treatment 
  • make a complaint. 

Protection against discrimination in England, Scotland and Wales

In England, Scotland and Wales, the Equality Act 2010 protects anyone who has, or has had, cancer. Even if a person who had cancer in the past has been successfully treated and is now cured, they will still be covered by the act. This act protects you from being unfairly treated (discriminated against), harassed, or victimised on the basis of your cancer or your age. The act means it is no longer lawful, without good and sufficient reason, to provide inferior services or refuse to provide them at all because of a person’s perceived age. This includes NHS services but not those in the financial services sector (such as travel insurance).

The act also protects anyone who is caring for someone who is elderly or has cancer from discrimination, harassment or victimisation because of their caring responsibilities.

Protection against discrimination in Northern Ireland

People with a disability in Northern Ireland are protected by the Disability Discrimination Act 1995. This means you cannot be discriminated against, harassed, or victimised on the basis of your disability, including by health services.

The law also protects people with cancer and carers who are also employees from direct discrimination and harassment in the workplace in Northern Ireland.

At the moment, in Northern Ireland, the law only protects against age discrimination in employment, vocational training and education, and not in services such as health or financial services.

More information about discrimination laws

For detailed information about your rights under disability discrimination laws, contact:


Personalised treatment

There is no single treatment that is right for everyone so it may be difficult for you and your doctors to decide which is best for you. Doctors should personalise your treatment. This means planning treatment to suit your particular situation. They should consider your general health and your biological age (how well your body is working) rather than just how old you are in years (your actual age).

They should also be sensitive towards any religious or spiritual beliefs that you may have shared with them. For example, this could mean providing you with information about therapies that could improve your spiritual well-being, such as meditation.

NHS services should be provided equally to everyone, regardless of age, gender, race, disability, sexual orientation, religion or belief.


Treatment guidelines

There are official national guidelines and standards that explain what should happen when someone receives cancer treatment. These guidelines and standards may differ depending on where you live in the UK. You can ask your healthcare team to show you these documents.


Respecting your dignity

You have a right to expect that the people caring for you will respect your privacy and be sensitive to your needs.

This may be as simple as them asking you what you would like to be called, rather than assuming that they can call you by your first name. It also means giving you privacy during physical examinations. If you find a situation embarrassing or distressing, then let the doctor or nurse know so that they can help to make things more comfortable for you.

You may feel a range of emotions during and after cancer treatment. You may find it helpful to read our information about feelings and the emotional effects of cancer.


If a drug isn’t available

If a treatment that may help control your cancer isn’t available to you, it can be difficult to know what to do. To begin with, it’s important to talk to your cancer specialist. You can then both decide if it really is the best treatment for you.

You may decide that you want to apply to the organisation that is responsible for health in your area (your local health body) for a treatment.

Each nation has a different name for local health bodies:

  • In England, they are called clinical commissioning groups (CCGs).
  • In Scotland and Wales, they are called health boards.
  • In Northern Ireland, they are called health and social care trusts.

If you want to apply to your local health body for a drug or treatment, you'll need to follow the procedures they set out. These may differ from region to region. Some local health bodies have leaflets or information on their websites explaining what you should do. Your specialist will also be able to explain the local process to you.

If you live in England and are denied a particular drug because it is too expensive, you may be able to access it through the Cancer Drugs Fund. This is a special fund set up by the government. It is only available after all other sources of NHS funding have been investigated. If you think you may be eligible for the fund, you can discuss it with your specialist.

The governments in Scotland, Northern Ireland and Wales decide separately how they spend their money on health. All three have chosen not to create a Cancer Drugs Fund, but are looking at different ways to improve access to cancer drugs. In all three countries, you and your cancer specialist or GP can apply to your local health board, asking for it to make a treatment available to you as an exception from its usual rules.

We have more information about what you can do if a treatment isn’t available in your country.


Accessing cancer information

Information can help you make informed choices. You should be given as much information as you need to help you understand your diagnosis, treatments and possible side effects.

If your eyesight is poor, many organisations, including Macmillan, produce information in large print. We can produce Braille or large print versions of our information resources on request. Some of our booklets are also available as audio CDs.

If you have hearing difficulties or are deaf, some of the videos have British Sign Language translation.


Consent

Before you have any treatment, your doctor will explain its aims to you. They will ask you to sign a form saying that you give your permission (consent) for the hospital staff to give you the treatment. No medical treatment can be given without your consent. Before you are asked to sign the form, you should be given full information about:

  • the type and duration of the treatment
  • its advantages and disadvantages
  • any significant risks or side effects
  • any other treatments that may be available.

If you don’t understand what you’ve been told, let the staff know straight away, so they can explain again. Some cancer treatments are complex, so it’s not unusual to need repeated explanations.

You are also free to choose not to have the treatment and should be told what will happen if you choose this option. You also have the right to suggest a treatment that you think is the best option for you, even if the people treating you disagree.

Tips for talking to your doctor

Find out how to get the most out of your appointments with a GP or doctor.

About our cancer information videos

Tips for talking to your doctor

Find out how to get the most out of your appointments with a GP or doctor.

About our cancer information videos


Mental capacity

Mental capacity is the ability to:

  • understand and retain information
  • make decisions based on that information
  • communicate the decision.

For example, a person may be unable to make a particular decision at a specific time about a proposed treatment because they lack mental capacity. If a person lacks mental capacity to make a treatment decision, a doctor must act in their best interests and attempt to get information about what they would want from those close to them.


Confidentiality

Doctors and other health professionals aren’t allowed to share details of your diagnosis and treatment with family, friends or carers without your permission. They also have to involve you in any discussion about your care. Discussions are only allowed to take place without you if you have given permission.


Advanced decisions and lasting power of attorney

Some people write down, while they have capacity, what treatments they would refuse and under what circumstances they would refuse them. This can be helpful in case a time comes when they can’t make or communicate treatment decisions. This is called an Advance Decision to Refuse Treatment. It can also be called an Advance Directive or Living Will.

If you want to allow someone to make decisions about your care on your behalf, you can set up a Lasting Power of Attorney (health and welfare) if you live in England, Scotland or Wales. There is no Power of Attorney to give someone the right to make welfare decisions on your behalf in Northern Ireland, but you can say how you would like to be cared for using documents like an Advance Care Plan.

In every country in the UK, you can set up a Long Term Power of Attorney that allows someone to make decisions about your finances and property on your behalf.

Our booklet Your life and your choices: plan ahead gives more information about planning your future care. There is one version for England and Wales, and two others for Scotland and Northern Ireland. We also have a booklet called Sorting out your affairs, which has more details about planning you financial affairs.


Making a complaint

Most of the time, treatment and care within the NHS goes well. However, this is not always the case and you may be unhappy with the care you have received. Discussing this with the healthcare professionals involved or another person on the team can often resolve the issue. It’s a good idea to raise any concerns you have at the time you notice them so that they can be addressed promptly. However, if this doesn’t work, or if you feel talking about the issue with the people involved won’t help, you may want to make a formal complaint. Complaints can also be made by someone acting on your behalf, with your consent.

All hospitals and GP practices must have someone who is responsible for dealing with complaints, usually called the complaints manager. Your local hospital or trust will have its own complaints leaflet that explains the national complaints procedure that they must follow. They can give you a copy.

In England, if your complaint is about hospital care, you can contact the hospital’s Patient Advice and Liaison Service (PALS). PALS can usually help solve problems or they can put you in touch with the NHS Complaints Advocacy Service, which can give you advice about making a formal complaint about any NHS service. Your local Healthwatch branch can also tell you how to contact the NHS Complaints Advocacy service.

In Scotland, you can get advice from your local NHS Board. Find contact details for your local board.

In Wales, help and advice is available from your Community Health Council. Find your local health council. Its details are also in the phone book.

In Northern Ireland, you can get help and advice from the Patient and Client Council. You can also call 0800 917 0222.

A good place to get free advice about making a complaint is your local Citizens Advice Bureau.

The Older People’s Advocacy Alliance (OPAAL) offers independent advocacy services which can help to ensure that all relevant procedures are used, all options explored, and sufficient attention is given to the circumstances of each individual cancer patient. We have more information about making a complaint, advance decisions and power of attorney.

Back to Coming to your decision

Finding out your treatment options

Knowing basic information about your type of cancer and different treatments options can help you to make an informed treatment decision.

Making your decision

If you’re struggling to come to a decision about treatment, try following these five steps.