Help us improve patient information for the Gestational Trophoblastic Disease Service

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 quality of the current patient information provided to patients, who are being monitored or cared for by the Gestational Trophoblastic Disease (Molar Pregnancy/GTD) team at Charing Cross Hospital. We want to understand how this patient information could be improved. What we learn will help inform us for future improvement.

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 know that patients often have not heard of molar pregnancies, trophoblasts or choriocarcinoma prior to their diagnosis and finding reliable information can be challenging. You may also have found it difficult to be monitored remotely by the GTD team and receive letters in the post or to contact the team directly for test results.

The GTD team at Charing Cross Hospital 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 the GTD service 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 monitored or cared for by the gestational trophoblastic disease service at Charing Cross Hospital within the last 12 months. This includes various groups of patients, for example:

  • Patients who have had their HCG monitored using the postal system and contacted the screening service for results and advice
  • Patients who required clinical management, such as drug treatment or surgery

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 9th 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 its screening and treatment services.

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

The Helix Centre is a research facility 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 that can take 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 have 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 members of the public 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 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 aspects 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.

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 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.

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 support organisations, there are further resources listed below.

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
  • 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.
  • Nafsiyat - A charity offering intercultural therapy in over 20 languages to people from diverse cultural communities in London.
  • 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. 

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

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

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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