If you are unhappy with your care

People often develop close relationships with their healthcare team. But some conversations can be difficult.

There may be:

• something you want to feedback or complain about
• a decision about your healthcare that you disagree with
• a problem with how your healthcare team treats and communicates with you.

Starting a conversation about this may feel like a lot to cope with when you are already coping with cancer. You may feel that you are not being listened to, or that your concerns are not being taken seriously. 

If you need to have a difficult conversation with a healthcare professional, the tips on this page might help.

Our Easy Read publication 7 steps to equal health care can be useful for people with a learning disability. It uses simple language and pictures to explain how to advocate for good healthcare.

People often worry about having a difficult conversation with their healthcare professional. You might worry about the following:

My healthcare team will start to treat me differently, or they will think I am a difficult person to deal with. 

It might help to remember that you are talking to your healthcare professional to improve things. Talking about a problem is often the first part of solving it. If it goes well, you should feel more satisfied with the situation. Your healthcare team should have a better understanding and will work with you to deal with your concerns. Raising a concern will not affect your care or the treatments you have.

I cannot challenge my healthcare professional because they are a specialist.

Your healthcare professional has specialist training and knowledge, but you are the expert about you. We have more information about shared decision-making. The NHS aims to provide care that is right for each person. If your healthcare team has not correctly understood what your needs are, it is okay to tell them what is important to you.

The person I talk to already has ideas about me that will affect the way they talk to me or treat me. 

We all make assumptions about other people based on what we think we know about them. These ideas or biases can stop us from hearing what the other person really thinks or wants.

For example, a healthcare professional may assume you want to be treated in a certain way based on what they think your religion is. They may have incorrect ideas in general about people from your cultural background. They may assume you will or will not want a certain cancer treatment because of factors such as your age, sex, gender, sexual orientation, disability or social situation.

These assumptions are often unspoken and difficult to identify. The people involved may not be aware of them. They may believe they are treating you in a fair and unbiased way.
If you think a person’s attitudes might be affecting a conversation, the following tips might help:

• The person you are talking to is a professional and may welcome feedback so they can learn and offer better care. If you know an attitude is causing problems, you may be able to say something that helps them correct it.
• Healthcare professionals are there to help you. Their job is to get it right and make things better for the people they care for. Try to be positive as you talk to them. Assume they want the best for you and want to understand you well.
• Think about your own attitudes. Are you assuming the conversation is going to be difficult or that the person will not listen? Will this affect how the conversation goes?

If your healthcare team is treating you less well than someone else, this is called discrimination. We have more information about coping with discrimination below.

Think about what you want to talk about. What are the issues or problems? What do you want to achieve from the conversation. Do you have questions you want answered?

You might find it helpful to write this down. Or you could talk through what you want to say with someone close to you. This may help you work out exactly what you want to say. It can also help you practise and feel more confident.

Is there information you should take to the appointment or anything you should research before you go? Try to be as prepared as you can.

Is there anything that will help you communicate or make you more confident?

If English is not your first language, you can ask for an interpreter to attend appointments with you.

Do you want a someone else to be involved? This could be a friend, family member or carer. Or you may have a support person or advocate who helps you get your views and wishes heard. If someone comes with you, tell them what you want them to do. Do you want them to listen and take notes? Do you want them to speak on your behalf or ask questions?

Think about the conversation. Did it achieve what you wanted? 

If you are able, follow up the conversation with an email or letter to the healthcare professional or team involved. This can be a useful way of showing you understand what was decided and confirming any next steps.

You may not be happy with how the conversation went, perhaps because:

• you do not feel the person listened or heard you
• your questions have not been answered
• your issue was not taken seriously
• the person you spoke to did not communicate effectively, or even politely.

It is not always easy to know what to do next. Sometimes it is helpful to talk to someone close to you. If you have strong or difficult feelings about the conversation, you may find it helpful to give yourself time to think. 

If you are still unhappy, you could try one of the following options:

• Ask the healthcare professional, or someone else in your healthcare team, if there is another way to communicate with them. For example, could you email your questions to someone in the healthcare team?
• Write to your healthcare professional or healthcare team explaining why you are unhappy with the conversation you had. Sometimes writing the problem down makes it clearer and helps the person you talked to understand how you feel. 
• Make a complaint or give feedback to the healthcare service involved. 

Sometimes the problem can be sorted out by talking to the people involved. It is a good idea to try this before making a formal complaint.

To begin with, it is usually best to speak to the healthcare professional involved. If you are worried about how to start a conversation about your care, we have more information about challenging conversations with healthcare professionals (see 'Having difficult conversations with a healthcare professional' at the top of the page).

If you do not feel comfortable or able to do this, you could speak to someone else in the healthcare team. This might be the person’s manager. 

If you decide to make a formal complaint, find out about the complaints procedure. You can ask your healthcare provider for a copy of the process. Or you can usually find information online. 

For information about making a complaint about NHS healthcare in:

• England, visit nhs.uk
• Scotland, visit nhsinform.scot
• Wales, visit gov.wales
• Northern Ireland, visit nidirect.gov.uk.

For more information about making a complaint about private healthcare, contact your healthcare provider.

Making a complaint can feel like a lot to cope with when you are already coping with cancer. You might find it helpful to get support from someone close to you. Talking about the problem may help you work out what you want to say in your complaint. Or they may be able to help you by filling in forms or being in meetings with you.

You can ask someone to complain on your behalf. You usually need to give them your permission in writing to do this.

Some organisations also provide information and support to patients making a complaint. We have contact details for these organisations in ‘Help with your complaint’ (see below).

You should make the complaint as soon as you reasonably can. This means it can be investigated while the people involved are still available and can remember what happened.

Complaints about the NHS should be made within 12 months of when the event happened, or from when you were first aware of it. The time limit can sometimes be extended if there are reasons why you could not make the complaint within this period. For example, you may have longer to make your complaint if you were grieving at the time.

It is best to make a complaint in writing, but it can be made in person or by phone.

You should give as much information as possible so your complaint can be fully investigated. Focus on the main issues and leave out anything that is not relevant. Try to keep your explanations as clear as possible.

Try to include:

• dates of when and where the incident took place
• names and positions of the people involved 
• details of any other discussions about your complaint that have already taken place – include dates and the names of the healthcare professionals you spoke to 
• questions you would like answered and a list of the things you are not happy about
• what you would like to happen as a result of your complaint
• your name, address, phone number and email address.

You can send a written complaint by letter or email. Keep a copy of everything you send, and a note of when you sent it. If you make a complaint in person, a member of staff should record it in writing. Some hospitals, GP surgeries and clinics have websites that allow you to submit a complaint online.

Many hospitals and GP practices will have a complaints manager or team. You may be able to find their contact details by looking at the hospital or practice website, or checking their complaints procedure. If you are not sure who to send your complaint to, the following may help:

• If your complaint is about a GP, contact the surgery’s practice manager or complaints manager.
• If your complaint is about an NHS hospital, contact the hospital trust’s chief executive or the hospital complaints manager.
• If your complaint is about a private consultant or hospital, contact the hospital manager or hospital complaints manager.

You can get details of the complaints process from the NHS in your country, or from the private healthcare provider you are complaining to. The process will explain when you should expect a response to your complaint. It will also explain when and how you will be told the outcome of your complaint.

Make a note of the date that you expect a response. If you do not get the response on time, you can write or phone to ask what is happening.

Local resolution

Most complaints about healthcare are sorted out by the healthcare service involved. This is called local resolution. You should receive information about what has happened because of your complaint.

For example:

• if there was an investigation, what this found
• an appropriate apology
• an explanation of what has been learned and any changes that will be made.

If you are not satisfied, you can ask more questions or for more information.

If you do not believe your complaint has been properly investigated, or if you are unhappy with the response, you can complain to an ombudsman. This is an independent official who investigates complaints against businesses or organisations. There are different ombudsmen for:

• NHS care in England – Parliamentary and Health Service Ombudsman
• Social care in England – Local Government and Social Care Ombudsman
• NHS and social care in Scotland – Scottish Public Services Ombudsman
• NHS and social care in Wales – Public Services Ombudsman for Wales
• HSC Northern Ireland – Northern Ireland Public Services Ombudsman
• Private healthcare – Independent Sector Complaints Adjudication Service.

You should contact the ombudsman within 12 months of when the event took place, or from when you were first aware of it. You will need to fill in a form to explain why you are not satisfied with the way your complaint has been dealt with. The ombudsman will decide whether or not to investigate your complaint further.

If a healthcare provider has done something wrong when treating you, you may decide to take legal action. A clinical negligence claim is legal action to try and get compensation if you have been injured because of something your healthcare provider did wrong. Compensation usually means a payment of money.

You can get advice about taking legal action at any time. But if you take legal action during the complaints process, the NHS may stop investigating your complaint. Taking legal action may also affect whether you can complain to an ombudsman. An ombudsman will not usually investigate a complaint that is being considered in court, or has been to court.

Complaints and clinical negligence claims should both give you information about what went wrong. They may both lead to a formal apology or changes in practice to stop the event from happening again. But a complaint will not give you any money or compensation.

You can find more information about getting legal advice and taking legal action:

• The Law Society, The Law Society of Scotland and The Law Society of Northern Ireland list solicitors and have information about getting legal advice.
• Action against Medical Accidents (AvMA) gives advice and information about claims for compensation. If you cannot find the information you need on their website, you can call their helpline on 0845 123 2352.

Making a complaint can be difficult and upsetting. It may be painful to remember or talk about what happened. If you still need medical care, you may find it hard to trust your healthcare team.

Making a complaint should not have a negative effect on your treatment or care in any way. But people often worry about this. It may help to talk to your healthcare team, so they understand your worries.

Each person has their own way of coping with difficult situations. You may find it helpful to talk to family, friends or someone outside of your situation, such as a counsellor. Other people prefer to keep their feelings to themselves. There is no right or wrong way to cope.

Our Online Community is a place where you can share experiences with people who know what you are going through. You might also find our information on coping with your emotions helpful.

The list of organisations below may be able to offer you advice and support. You may also find it helpful to talk to a counsellor who can listen and help you deal with your emotions. Call us on 0808 808 00 00 to talk to our cancer support specialists, who can give you advice about finding a counsellor in your area.

We want everyone affected by cancer to feel our information is written for them.

We want our information to be as clear as possible. To do this, we try to:

• use plain English
• explain medical words
• use short sentences
• use illustrations to explain text
• structure the information clearly
• make sure important points are clear.

We use gender-inclusive language and talk to our readers as ‘you’ so that everyone feels included. Where clinically necessary we use the terms ‘men’ and ‘women’ or ‘male’ and ‘female’. For example, we do so when talking about parts of the body or mentioning statistics or research about who is affected.

You can read more about how we produce our information here.