Not yet recruitingOBSERVATIONAL

How Can the Experience of Hospital Outpatient Departments be Improved?

This project wants to find ways to improve hospital outpatient departments, particularly for people with nerve conditions like Neurofibromatosis Type 1 (NF1) and NF2-related Schwannomatosis. These conditions can sometimes mean people have sensory challenges, and the study wants to make sure hospital spaces are comfortable and inclusive for everyone. Researchers will work closely with both patients and hospital staff to understand what it's like to visit or work in these departments. They'll use a special method to gather ideas and suggestions, and then work together to design new ways to make things better. The project will run for four years.

At a glance

Status

Not yet recruiting

Sponsor

King's College London

Enrolment target

Start

01 Sep 2026

Estimated completion

01 Jun 2029

Neurofibromatosis Type 1 (NF1)NF2-related Schwannomatosis

What is this study about?

This study, called 'How Can the Experience of Hospital Outpatient Departments be Improved?', is all about making your visits to hospital outpatient departments as good as they can be. It's specifically looking at how people with certain nerve conditions, like Neurofibromatosis Type 1 (NF1) and NF2-related Schwannomatosis, experience these departments. The reason for focusing on these conditions is that people with them often have sensory challenges, meaning bright lights, loud noises, or busy environments can be particularly difficult.

The main goal is to improve these hospital spaces and make them more welcoming and comfortable for everyone, especially those with sensory challenges. To do this, researchers will be working hand-in-hand with both patients and the staff who work in these departments. They believe that by bringing everyone together, they can get the best ideas for improvements.

Over the next four years, the study will use a well-known approach called 'experience-based co-design'. This basically means patients, carers, and staff will share their experiences, identify any problems, and then work together to create solutions. It's about making sure any changes truly reflect what people need and want, making your hospital experience better.

Key takeaways

This study wants to improve hospital outpatient departments, focusing on making them better for people with nerve conditions and sensory challenges.
It involves patients, carers, and staff working together to identify problems and design solutions.
You can choose how much you want to be involved, from sharing experiences to helping create new ideas.
No new medications or treatments are involved; it's about improving experiences.
You can stop taking part at any time without it affecting your care.
The study is for patients aged 16+ from Guy's and St Thomas' NF team and their carers, or staff in these departments.

Who may be eligible?

To take part in this study, you would generally need to be a patient aged 16 or over who has appointments with the Neurofibromatosis (NF) team at Guy's and St Thomas' NHS Foundation Trust. It's also important that you feel you have some sensory challenges, as this is a key focus of the study. Carers or family members who come with these patients are also welcome to join.

Hospital staff who work with people with nerve conditions at Guy's and St Thomas' NHS Foundation Trust can also take part, no matter their job role.

However, if you are under 16 years old, or if you are unable to understand and agree to take part (give informed consent), you wouldn't be able to join this study. Very new temporary staff who have worked less than one shift are also not included.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 16 years old or over?
Do you attend outpatient appointments with the NF team at Guy's and St Thomas' NHS Foundation Trust?
Do you feel you experience sensory challenges?
Are you a carer or relative accompanying a patient from the Guy's and St Thomas' NF team?
Are you a staff member working with nerve conditions at Guy's and St Thomas' NHS Foundation Trust?
Can you understand and agree to take part in the study?

Answer every question to see your result.

What does participation involve?

If you decide to take part, you can choose how much you want to be involved. Some parts might involve researchers quietly observing in outpatient waiting areas to understand how things work. If you prefer not to be observed, you can simply let staff know.

You might be invited for a short chat while you're walking to your appointment, or staff might be asked to join a group discussion. If you want to be more involved, you could also attend workshops over time. In these workshops, you'd work with others to identify problems and come up with ideas for improvements.

Everything is optional, and your consent will be checked at each stage. Sessions might be audio recorded, but you can stop taking part at any time without needing to give a reason. The whole project will run over four years, but your personal involvement will depend on the activities you choose to join.

Potential risks and benefits

Taking part in this study offers you a chance to actively shape and improve hospital outpatient departments for yourself and others, especially for people with sensory challenges. By sharing your experiences, you can help create a more inclusive and comfortable environment. There are no direct medical benefits or risks involved, as this study doesn't involve any treatments or medications. The main 'risk' is giving up some of your time. However, you have the right to withdraw from the study at any point, for any reason, and this won't affect your medical care in any way.

Locations (1)

Guy's and St Thomas' NHS Foundation Trust
Verified postcode
London, United Kingdom

Common questions

What is Neurofibromatosis (NF)?

Neurofibromatosis (NF) is a group of genetic conditions that cause tumours to grow along your nerves. These tumours are usually not cancerous, but they can cause various health problems, including sensory challenges.

What does 'sensory challenges' mean?

Sensory challenges mean that your senses (like sight, hearing, touch) might be more sensitive or react differently to things around you. For example, loud noises, bright lights, or busy environments might be overwhelming or uncomfortable.

Will I have to take any new medicines or treatments?

No, this study is not about new medicines or treatments. It's about understanding and improving how hospital outpatient departments feel and work for patients and staff.

How much of my time will this take?

It depends on how much you choose to get involved. You might take part in a short chat, or attend workshops over time. You can choose to be involved in as much or as little as you like, and your commitment will be discussed with you.

What if I change my mind after joining?

That's absolutely fine. You can withdraw from the study at any point, for any reason, without having to explain why. It will not affect your medical care in any way.

How to find out more

Rona Inniss, MSc, RN

rona.inniss@nhs.net +44 207 1889976 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.