Other Useful Information
We have a duty to make sure you are cared for in a safe environment and that we protect and uphold your rights. As a patient, it’s important to know your rights and understand how they affect your care.
What role does research play at The Royal Marsden?
Research is an important part of developing better treatments for cancer. Many specialist centres like The Royal Marsden take part in clinical trials or research studies.
These trials may be assessing the effectiveness of a new treatment compared to a standard treatment. If the new treatment produces better results or offers fewer side effects, it could go on to be widely used for all people with a particular cancer.
How does this involve me?
You may be asked if you would like to take part in a clinical trial, for example, to test the benefits of a new or improved type of chemotherapy.
If a clinical trial is an appropriate treatment option in your case, your consultant will discuss it with you to help you decide whether or not you want to take part. The booklet Clinical Trials gives more detailed information and is available in information racks throughout the hospital.
As insurance policies can differ you will need to speak to your insurer about whether the trial is covered by your individual policy.
There are several national cancer information organisations which can let you know about clinical trials currently in progress or provide links to online clinical trial databases.
Where do I go for more help and information?
Our Help Centre offers two services: the Patient Advice and Liaison Service (PALS) and the Patient Information Service. These services provide different kinds of information, support and advice to patients, their families and friends, and staff involved in their care.
In Chelsea, the Help Centre is on the ground floor of the Chelsea Wing, in the day care area. In Sutton, the Help Centre is to the left of the main entrance, at the top of the ramp.
How to contact the Help Centre
You can contact the Help Centre by dropping in, phoning or emailing. The free phone number is 0800 783 7176 (please note that your call cannot be redirected within the hospital from this number) or email firstname.lastname@example.org.
Patient Advice and Liaison Service (PALS)
We like to know when we are doing things well but, more importantly, we need to be told when things go wrong so that we can put them right. If you have any issues or concerns about the hospital please let PALS know about them. The service can help address a wide range of issues and suggestions from patients may be incorporated into hospital policies.
If you wish to make a comment about your personal experience of the service or care you have received in the hospital please speak to the relevant service manager, such as the sister, charge nurse or head of department. Comment cards are available in all areas for this purpose.
Alternatively, please contact the Private Care Matron or the Private Care Front of House Manager.
You should never hesitate about raising a complaint or concern. We take all feedback constructively and assure you it will not affect your ongoing care.
If you feel your concerns haven’t been resolved, please tell a member of staff in the Help Centre, who will liaise on your behalf to try and resolve issues. They will also be able to let you know how to raise a concern or complaint.
You can also submit feedback online at royalmarsden.nhs.uk/feedback
Viewpoint is a patient‑led scheme run by PALS for collecting general comments, suggestions and observations anonymously from patients, their families and friends. You can find wall‑mounted Viewpoint stations, with comment cards and post boxes throughout the hospitals.
Patient Information Service
A diagnosis of cancer can have a huge impact on you, and on your family and friends. It can also raise all kinds of questions. The Patient Information Service is here to help.
We can give you comprehensive information about cancer itself, as well as cancer treatments and their side effects. We can also give you advice about the practical help and support available for living with cancer, such as how to find self‑help and support groups near your home. Staff are available during Help Centre opening hours to guide you through the information and to offer any advice and support you may need.
We publish a number of booklets and leaflets about cancer and its treatments at The Royal Marsden. This information has been awarded the Information Standard, a quality mark for health information.
Information is also available as books, CDs, and DVDs, all of which you may borrow from the lending library at each Help Centre.
The Royal Marsden website
Our website provides a wide range of information about the hospital and the services we offer. You’ll be able to find details about our consultants, the treatments we provide, general information about cancer and much more.
How do you keep my health information confidential?
Your personal health information is kept in records written on paper, held on computer or both. We make sure that all of our records are stored securely at all times. The Royal Marsden has a duty to maintain full and accurate records of the care we provide.
We have a legal duty to keep information about you confidential, secure and accurate. We will share this information inside the NHS or with outside organisations, such as your insurer, only if it is necessary for your treatment and care. Anyone who receives information about you from us is also under a legal duty to keep it confidential.
We will not give information about you to organisations such as benefits agencies, employers or the media without your permission.
We will make sure, through contract terms and staff training, that everyone who works in or on our behalf understands their duty of confidentiality, what it means in practice and how it applies to all parts of their work.
We are committed to data protection and take great care to ensure that your data is looked after properly. Only staff who are involved in your care will be able to look at your record. If we find that someone has deliberately accessed records about you without permission or good reason, we will take action that may include disciplinary action.
How do you use information about me?
What information do you keep in my health care records?
During your visit or stay at The Royal Marsden we will ask you for information about yourself. We keep information about you so we can care for you safely and effectively. The information will be kept on a computer or paper record (or both).
The Royal Marsden has its own electronic patient information system which provides a greater degree of security than paper records. Only those involved directly in your care, which includes diagnosis and treatment, and the quality of healthcare provided are allowed access to your information.
How do you use my health information?
The people caring for you use your information to:
- Provide treatment
- Check the quality of your care
- Help you make good decisions about your health
- Investigate complaints.
They will share relevant information with other staff involved in your care or those checking its quality (unless you have asked that we limit how we share your record). This makes caring for you safer, easier and faster. We may need to share information about you with other people involved in your care, such as your GP, dentist, health visitor or community nurse.
We will not share health information that identifies you (particularly with other government agencies) for any reason other than providing your care, unless:
- You have agreed
- The information is necessary for your care and treatment
- We are required to do so by law.
Sharing information with family and friends
It is important that we know with which family members or friends we may share information about you. When you first attend the hospital and register, we will ask you the name and contact details of your next of kin. This person does not need to be related to you but should be able to reflect your wishes at all times, even if you are unable to do so yourself.
Giving permission to share your information
You have a right to limit the health information about you we can use or share. If you want to do this, tell a member of staff providing your care. Please note that limiting the information we can share may make it more difficult for us to provide you with the best possible care.
Usually we will not share your personal health information with people such as a relative, carer or friend without your permission.
However, there are exceptions: sometimes, the law requires us to share your personal health information without your permission – for example, to investigate a serious crime or to protect a child.
Helping us improve our service
We may use information about you to help us provide a better service and improve the patient experience. When we use information about you, your name, address and other information that identifies you is removed whenever possible. If we do need to use information that identifies you, we will explain to you how and why your information will be used.
If you would like to know more about how we use your personal information, please call the Help Centre on 0800 783 7176.
How can I access information?
Access to letters about you
You can choose to receive a copy of letters about you written by one health professional to another, such as letters between your GP and your hospital doctor. Sharing these letters will help improve communication between you and your healthcare professionals. This should in turn give you a better understanding of your planned care.
You can read more about access to letters in the leaflet Copying letters to patients available in all outpatient clinics.
Your right to know and see your health information
You have the right to know how your personal health information is used. You also have the right to see your health records, although if you wish get a copy this is subject to a fee. There is a £10 administration charge for providing copies of your clinical notes and a fee of 25p per sheet for any copies made, up to a maximum cost of £50.
If you would like to view or receive copies of your clinical records, you need to complete a Subject Access Request under the Data Protection Act. In order to do this, you can write to:
Access to Health Records Officer
The Royal Marsden
Surrey SM2 5PT
You can also call 020 8642 6011 and ask switchboard to put you through.
We will arrange to provide you with a copy of your information within 21 days of receiving your request and all the information needed to process it. You have the right to ask for your information to be changed or blocked.
If the information we are holding about you is incorrect, or causing you distress or harm then you can apply to have the information amended or deleted. If you ask to change or block any information in your records, we may need to contact you to ask for additional identification.
Please note that we cannot give you confidential information about other people, or information that a healthcare professional considers likely to cause serious harm to the physical or mental health of you or someone else.
Access to information about the hospital
The Freedom of Information Act came into effect on 1 January 2005. The Act gives members of the public a general right of access to recorded information held by public authorities. You can ask to see information about the hospital under this Act. Any information we hold at the time a request is received will be eligible for release unless it is covered by an exemption.
Making a request
Anyone can make a request under the Act. There are no restrictions on your age, nationality or where you live. Please ensure you:
- Put your request in writing, using either the Freedom of Information form at royalmarsden.nhs.uk/foi or a letter marked for the attention of the Freedom of Information Manager at our Chelsea site.
- State clearly what information you want.
- Include your name and address.
When we receive a request for information, we will consider the request and respond as soon as possible. This will be no later than 20 working days after receiving your request. The Act allows us to extend this deadline in certain limited circumstances.
How can I help The Royal Marsden?
Become a Foundation Trust Member
As a Foundation Trust, we give greater say in how we are run to local people, staff and all those who use our services, including patients, their families and carers. Our members reflect these groups and help us ensure that we are providing the very best service we can – a service built around the needs of the community.
Members are represented by elected governors who sit on the Council of Governors. They play a key role in shaping the strategic direction and governance of The Royal Marsden.
Membership is free to join and open to anyone over the age of 16 who resides in England.
As a Member you will be able to:
- Receive information that keeps you up to date with our work, including a copy of the RM magazine
- Be invited to Members’ events which range from clinical presentations to behind-the-scenes tours of the hospital and leading-edge technology
- Have a say on how to improve patient care and services
- Vote to elect your governors or have the opportunity to stand for governor.
You can choose to be involved as much or as little as you like.
How to apply
There are several ways in which you can apply to become a member. You can:
- Collect a membership form; these are displayed around the hospital
- Complete an application form online royalmarsden.nhs.uk/membership
- Ask the Corporate Governance team to post a form to you by calling 020 7808 2844.
Become a Friend and volunteer
The Friends of The Royal Marsden is a voluntary organisation that exists to help patients. The Friends raise money to provide activities, equipment and extra comforts for patients. The Friends also provide services such as the cafeteria and mobile shop. You can call The Friends on 020 7352 3875.
For more about the work of the Friends and how you can volunteer, please see the Friends of The Royal Marsden leaflet available around the hospital or in the Help Centre. You can also call the Friends on 020 7808 2982.
Support the charity
The Royal Marsden Cancer Charity supports the work of The Royal Marsden by raising money for the hospital. There are all sorts of ways to get involved and show your support, from taking part in fun runs to giving a donation online. Find out more at royalmarsden.org
What else can I do to make a difference?
Join the Patient and Carer Advisory Group
The Patient and Carer Advisory Group provides patients and carers an opportunity to improve the Trust’s current and future services and the care provided to patients.
The self‑run group works with the Trust on a variety of projects and committees where the views of patients and carers can help make the hospital a better place for patients.
For more about the group and how to get involved, contact the Quality Assurance Team on 020 7808 2176.
Volunteer at the Biomedical Research Centre
The Biomedical Research Centre (BRC) is a partnership between The Royal Marsden and The Institute for Cancer Research which supports the innovative research that takes place. Any patient, carer or member of the public can become involved with the research undertaken at BRC. For more information on how you can participate, visit cancerbrc.org
Other ways to make a difference
We value the feedback we receive from our patients and we try to provide as many ways as possible for them to share their experiences and have their say in how our services are run. There are a variety of opportunities for you to become involved, depending on how much time you have, the areas you’re interested in and how you want to take part.
For example, you can contribute by email, by post or by telephone, as well as attending a meeting or joining a committee. Some projects will be short term while other projects may continue over a longer period of time.
For more about the different ways patients can get involved, call The Royal Marsden Help Centre on 0800 783 7176 (Freephone) or see the ‘Make a difference’ leaflets which are available from the Help Centres or at the Viewpoint stations.