For service users and carers

We are HEER!

We are a group of service users and carers established in 2006. We all have lived or learned experience of mental health services, and we’re passionate about research.

We provide our time and expertise to improve mental health research outcomes.

The HEER group members:

• are passionate about research,
• have lived and learned experience, and
• feel that mental health research can be better when we work together.

What we do

We support researchers through all parts of their research project from idea to design and on to sharing the results. We provide guidance on how to improve and make the research more appropriate, relevant and accessible to service users. We help to make good research.

We meet on a monthly basis and the meetings are currently running as hybrid so you can attend in person or virtually.

Joining the HEER

Please contact the Research and Development department if you would like to express an interest in joining the group.

You can email us at research.lypft@nhs.net.

Or call us on 0113 855 2387.

We are very keen to hear from people with dementia and their carers to help us better understand this disease and find new ways to improve care and help people live well with dementia.

The National Institute for Health Research (NIHR) in partnership with Alzheimer’s Research UK and Alzheimer’s Society have developed Join Dementia Research, a service which allows people to register their interest in participating in dementia research and be matched to suitable studies.

Sign up to Join Dementia Research to find out what research you could take part in.

The service is aimed at people with dementia and their carers, but anyone with and without dementia over the age of 18 can sign up and people can register on behalf of someone else.

We have created a database of active research projects which we are participating in.

This is currently contained in a Microsoft Excel document.

We know this isn’t the most accessible way to display the information so we are currently working on a better online database, and we’ll upgrade it as soon as we can.

If you would like to find out more about participating as a service user, carer or member of staff in any of these studies, or you’d like to request this information in a different format, please contact our Research and Development Team by emailing research.lypft@nhs.net or calling 0113 855 2387.

What is Consent for Contact for research?

Volunteers who take part in research play a crucial role in improving the lives of thousands of people every year. Nearly all research needs help from those affected to make this possible. Through research we can develop better treatments and you can help us to achieve this.

This is your opportunity to express an interest in hearing about research you could get involved in. If you are happy to be contacted about research we will record this in your medical records.

You may be asked about this by your care team or the Trust research team at any point throughout your care.

Alternatively you can contact us using the details below.

What type of research could I be involved in?

There are different types of research you may be invited to take part in. Some may be looking into the cause of health conditions others may be finding out if new treatments and therapies can improve people’s health. All research you are invited to take part in has been approved and is safe to run in the NHS.

Taking part may involve talking about your own experiences, completing a questionnaire, or trying out a new talking therapy, or treatment. Participation may include face to face meetings with a researcher or via phone or video call.

Taking part is usually in addition to your current treatment plan and should not affect care you currently receive. There may be incentives offered for taking part such as vouchers, or cash to thank you for your time. Some also reimburse travel costs and expenses.

We will always let you know details of what is involved before you decide if you would like to take part. You will also be given plenty of time to think about it and ask any questions.

Agreeing to hear about research opportunities is different to other offers such as contributing to Trust surveys and evaluations of services you may be accessing – these will be offered via other teams within the Trust.

What happens if I agree to being contacted about research?

By agreeing to contact you are not agreeing to take part in specific research, just to hear what opportunities are available to you.

If you agree we record your permission on your medical records. You will receive a copy of an information leaflet to keep.

Prior to contacting you, we check your medical records to determine your eligibility to studies. Your medical records contain information about your health, care and treatment. By checking these records, we can check your suitability for a study based on things such as symptoms or current medication.

We will then approach you to let you know about opportunities you may like to take part in. You may be contacted via email, phone, or letter however our research team will try where possible to use your preferred method of contact if you have one recorded in your medical record.

It’s possible that the team may not contact you for a while. This may be because there are not any current studies suitable to share with you so please don’t worry if you haven’t heard from us straight away.

What happens if I don’t agree or want to change my mind?

It is entirely up to you whether you want to be contacted; you can change your mind at any time. You don’t have to give a reason and this won’t affect your current care.

We will make a note on your medical records so that we avoid contacting you in the future. Your care team may still approach you about specific research they feel may be beneficial, or may ask about your interest in being contacted in the future so you have the opportunity to agree at another time.

To notify us of a change or if you don’t wish to be contacted you can contact us via the details below.

What happens when I am discharged?

At discharge your care team may ask if you would like to continue to be contacted. If not asked, your original decision will remain. There are lots of research studies that you can continue to take part in even after discharge.

Will my personal details be kept confidential?

All Trust staff comply with the Data Protection Act (2018) to make sure your confidentiality is protected at all times. Our Trust Research Team and your care team who have approved verification checks access your medical record. Your information is not shared outside of the organisation.

If you are approached about a research study that you would like to take part in, your information may be shared with external researchers at that point but only with your permission.

Talk to us about Consent for Contact

By email at research.lypft@nhs.net

By phone on 0113 85 52387.