Help us improve patient information

Thank you for your interest in taking part.

Below is some information about the project and a short form to register your interest in taking part.

What is the purpose of this project?

The aim of this work is to understand the current patient information provided to patients who have recently experienced cancer care services at Imperial College Healthcare NHS Trust and how it could be improved. Patient information includes a wide range of things that you receive, or access, to understand or manage your care, such as leaflets, appointment letters and information online. We are focusing on several pathways, including breast and bladder cancer. The insights we learn will inform our work to improve patient information.

Our hospitals aspire to provide high quality care for all patients. We know we can do more to support people, and we would like to understand what we can do differently to improve experiences for our patients.

The information you share on your experience of our cancer services will be kept anonymous. Whilst we will be sharing a summary of what we learned in this project, nothing we share will have any identifiable information about you or your care.

Who are we looking to speak with?

You are eligible to take part if you have been treated for breast or bladder cancer at Hammersmith, Charing Cross or St Mary’s Hospital.

We are interested in speaking with people from a broad range of backgrounds, including underrepresented communities and those with a disability, impairment or sensory loss.

We would recommend applying as soon as possible to get involved. This opportunity will close at 23:59 on Sunday 9 March.

Who is leading this project?

We are working with the Helix Centre, part of Imperial College London’s Institute of Global Health Innovation, to undertake this project. This project is part of a wider programme of work that the Trust is doing to review and improve cancer services.

The Helix Centre has been funded by the Trust to carry out this project.

The Helix Centre is a research lab that is part of Imperial College London and located in St Mary’s Hospital.

The Helix Centre designs and evaluates products and services that tackle major health challenges by putting people and their needs at the centre of what they do.

What happens if you agree to take part?

  • You will participate in an informal conversation up to 60 minutes that can be conducted online through a video call, over the phone, or in person depending on what suits you best. We can provide an interpreter if you require and would allow up to 90 minutes for the interview in this case. If you have a preference of speaking to a man or woman, we will aim to accommodate this. If you have other accessibility needs or preferences, please let us know.
  • During the conversation we will ask you questions about the patient information you received and how it could be improved.
  • After our conversation, the project team will review the notes and patient information. They will summarise the issues for future improvement. A summary of the results will be shared with you.
  • We work closely with public members with lived experience to influence our work and often get their input on key project activities. We may involve a public member on the project team to analyse anonymised interview notes to compare with our interpretation of the findings.
  • With your permission, we may use anonymous quotes in our report, future studies, and/or publications.

What are the benefits and possible consequences of participating in this project?

  • The benefit of participating in this project will be to help inform potential improvements to patient information for cancer services across Imperial College Healthcare NHS Trust, making a difference to the experience of many other patients.
  • For taking part, you will receive a £25 “One4all” voucher valid at a range of stores for taking part.
  • A possible consequence of participating in this project is that you may be asked to revisit some parts of your care that you would rather not talk about anymore. This may lead to you feeling uncomfortable, emotional and/or upset. To minimise this risk, we will make sure you are able to guide the conversation, and we will make sure we only discuss topics that you feel comfortable to explore. We suggest you have a break after the interview to get some fresh air, speak to a family member or friend or can have a debrief with a member of the team after. You may also choose to end the interview at any time.

How will my privacy and confidentiality be preserved?

Under the law, Imperial College Healthcare NHS Trust is considered the data controller of any data relating to you that we process for this programme. The Trust is legally required to process your data in compliance with the requirements of the UK General Data Protection Regulation (UK GDPR) and the Data Protection Act 2018, in addition to its own internal policies.

We will only process your data with your consent. Your participation is entirely voluntary and you are free to withdraw your consent at any time, without giving any reason, and without any adverse consequences or penalty.

Subject to your consent, we will securely retain the data that we collect from you through the below questionnaire after six months. After that, we will delete the data in a secure manner.

For more information about how the Trust processes your data and what rights you have, please refer to our privacy policy. If you have questions about your data protection rights, you can contact the Trust Data protection officer at: imperial.dpo@nhs.net.

Contact for further information

Thank you for taking the time to consider speaking with us. If you have any questions about this project, please email imperial.userinsights@nhs.net.

Further sources of support and information

If you are looking for information or help from cancer support organisations, there are further resources listed below.

  • Macmillan cancer navigator service at Imperial College Healthcare NHS Trust (ICHT): This is a single point of contact for Imperial College Healthcare NHS Trust cancer patients and their families, helping you to navigate your care and resolve queries that you may have. Navigators can access information about your appointments, connect you to appropriate services and signpost you on to further support. They can additionally book you in for a telephone call back from your Clinical Nurse Specialist (CNS) if you have a query that requires clinical input.
    o The service is open Monday to Friday 8:30 to 16.30 (excluding bank holidays). Call: 020 3313 0303
  • Macmillan cancer information and support service at Imperial College Healthcare NHS Trust (ICHT): The Macmillan information and support service provides free, confidential support and information to anyone affected by cancer. The service offers the opportunity to talk to one of our team one-on-one about whatever matters most to you, as well as a range of weekly virtual groups that provide the opportunity to connect with other patients in a relaxed environment. The Macmillan welfare and benefits adviser can offer patients tailored advice on additional financial support. There are physical centres at Charing Cross and Hammersmith Hospitals and offer virtual and telephone support.
    • The service is open Monday-Thursday (excluding bank holidays), with various drop-ins available within our physical centres. For more information, please call 020 3313 5170 or email imperial.macmillansupportservice@nhs.net
  • Maggie’s west London: Maggie’s is a cancer charity that provides the emotional, practical and social support to people with cancer and their family and friends. The centre combines beautiful architecture, calming spaces, a professional team of support staff and the ability to talk and share experiences with a community of people who have been through similar experiences. Maggie’s centres are warm, friendly and informal places full of light and open space with a big kitchen table at the heart of the building. Maggie’s west London is located in the grounds of Charing Cross Hospital but is independent of our hospital.
    • The centre is open Monday to Friday, 09.00-17.00. For more information, please call 020 7386 1750.•
  • Macmillan Support Line: The Macmillan Support Line offers confidential support to people living with cancer and their loved ones. This support line is a national line provided by Macmillan and is independent of our hospital

If you have been affected by this questionnaire, we have listed some organisations below that may be able to offer some support.

  • Samaritans: Free 24/7 phone line to talk through any issues you're facing. Call 116 123. www.samaritans.org
  • Shout: Free, confidential, 24/7 text support line in the UK, offering texters immediate support with issues such as suicidal thoughts, depression, anxiety, panic attacks. Text 85258. https://giveusashout.org
  • Nafsiyat - A charity offering intercultural therapy in over 20 languages to people from diverse cultural communities in London. https://www.nafsiyat.org.uk/
  • The Black, African and Asian Therapy Network: The UK’s largest independent organisation to specialise in working psychologically, informed by an understanding of intersectionality, with people who identify as Black, African, South Asian and Caribbean. https://www.baatn.org.uk/

Patient advice and liaison service (PALS): If you have any suggestions, comments or concerns about your care or that of the person you are supporting, please contact our PALS team for advice:

The PALS team will listen to your concerns, suggestions or queries and is often able to help solve problems on your behalf.

Alternatively, you may wish to complain by contacting our complaints department:

Complaints department, fourth floor, Salton House, St Mary’s Hospital, Praed Street, London W2 1NY

Please note: This is an evaluation of current patient information provided as part of care pathways and the people conducting this evaluation are not medical professionals and are not able to answer any questions you might have. If you have any concerns about the medical care that you have experienced, you should contact the Patient advice and liaison service (PALS) and complaints team at Imperial College Healthcare NHS Trust. If you have already made a complaint, please be aware that the team in this session will not be able to address this complaint any further and will direct you to the complaints or PALS team.

Express your interest and consent to take part here:

* Required information

Do you consent to:

(a) the responses you provide in this questionnaire being collected, stored and reviewed by the project team to determine whether you are eligible to take part

(b) being contacted by the project team to be invited to an informal chat and take part as described above

(c) being contacted by the project team about project updates, or other opportunities to provide feedback

Cancer services are provided by Imperial College Healthcare NHS Trust at Charing Cross, Hammersmith and St Mary's hospitals.

We are asking this to ensure that we are including a wide range of people throughout the project.

We are asking this to ensure that we are including a wide range of people throughout the project.

We are asking this because we know people living in different areas have varying experiences of healthcare services. If you would not like to share this, please leave it blank.

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