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Join our new Oxford Psychosis Patient Advisory Group (O-PAG)

We are looking for people with experience of psychosis or being ‘at risk’ of psychosis to join our new Oxford Psychosis Patient Advisory Group (O-PAG).

By ‘at risk’ we mean having distressing experiences such as worries about other people or hearing voices. It can mean sometimes seeing things that are not real. It can also mean having difficulties sleeping, including problems getting to sleep or staying asleep, sleeping for too long or sleeping at the wrong times of day.  

Being ‘at risk’ does not mean that people usually go on to develop psychosis. Many people do well with help and never go on to develop psychosis.  

The group will support two new major research studies called Sleeping Better and FOCUS.

In Sleeping Better, a new talking therapy will be given to help people to sleep better. The idea is that if people sleep better then their mental health will be better as well. As the study focuses on improving sleep, we are keen to hear from people who may be ‘at risk’ of psychosis or have a diagnosis of psychosis who have had problems sleeping.   

In FOCUS we will be testing a new antipsychotic medication called KarXT. As the study involves a drug, we would be keen to hear from people who have taken medication for psychosis.

For more detailed information about Sleeping Better and FOCUS studies please just scroll down this webpage.

Both studies have been kindly funded by the Wellcome Trust.

What would I be asked to do?

We will be asking your opinion about things such as:

  • Looking at documents that we use to recruit people to take part in our research.
  • Giving us your opinion about the design of our studies and suggesting changes as needed.
  • Helping to identify questions to ask people about their experiences of taking part in our studies.
  • Helping us to make sense of the results of the two studies when we have them.   

We will simply be asking for your opinions. We won’t ask you to share any personal information during meetings. We will keep all your details strictly confidential.   

Payment and expenses

Payment at a rate of £25 per hour will be offered. We will offer more payment for people coming to in person meetings in recognition of the time it takes to get to meetings.  All reasonable travel expenses will be covered. We will be able to provide help to people who may not have suitable equipment to take part in online meetings

Location

You can live anywhere within the UK. But we particularly welcome applications from people living in the NHS trusts that cover the areas in which the studies are taking place:

Birmingham, Bristol, Coventry, Glasgow, Newcastle, Oxford, Berkshire, Northamptonshire, Milton Keynes, and London.  

How will meetings be held?

Some meetings will take place online. Others will be in person. We will make a decision about where to meet based on the needs of the group.  Some tasks will be carried out by email and we won’t need to meet at all.

Frequency of meetings

We will need to hold at least four meetings a year for the next five years (until December 2029). We will hold smaller meetings as needed throughout the year. Some work could be carried out in between meetings by email. We will hold smaller meetings which could include simple one to one conversation’s as the needed.   

Training and support

Research is full of complicated and very technical language. Research studies need to be designed in very particular ways – and it is not obvious why this is. Just about everyone working in research always finds that there is something that they still need to learn.

We will therefore be providing training and support to everyone.

Once the group is formed, we will ask everyone what training and support would be helpful. Once we know we will arrange tailored training. We will also provide support so that you can take part in online meetings if you need it. 

What if I am interested in only one of the two studies?

That is fine. Just let us know. Some introductory meetings will be for everyone. But after that you will be free to come to whatever meetings interest you. We will probably have separate meetings for the different studies that the group is supporting. We will always let you know in advance what the meeting is going to cover.

What if I have any questions?

If you have any questions at all then please do email Thomas Kabir (thomas.kabir@psy.ox.ac.uk). You can also phone 01865 218 601.   

How do I apply?

Please email Thomas Kabir in the first instance by 5pm on Friday July 5th, 2024.

If you have any issues with email then please phone 01865 218 601 or write to Thomas Kabir at Experimental Psychology, University of Oxford, Anna Watts Building, Radcliffe Observatory Quarter, Oxford, OX2 6GG.

In your message it would be helpful if you could say:

  • Why you would like to join the group
  • Something about your mental health experiences
  • If you have been involved in research before in any way.
  • Your approximate age
  • Where roughly in the country do you live

We particularly welcome applications from those that are currently underrepresented in research including those who have not had the opportunity to be involved in research before.   

Privacy Notice 

Information about how we [the University of Oxford] will use your personal data can be found on the Compliance pages of the University website

 

Sleeping Better Logo Small

The Sleeping Better study

The Sleeping Better study aims to help people with psychosis, and people at a ‘ultra-high’ risk of psychosis to sleep better. The idea is that better sleep means better mental health. And possibly a reduced risk of psychosis. This is a four-year study funded by the Wellcome Trust. It builds on the results of two successful studies called the Better Sleep Trial (BeST) and SleepWell.

In the SleepWell study a new talking therapy was given to young people who were compared with others who received their usual treatment. There was evidence of sustained improvements in sleep problems. However, this study was small with only 40 people who take part.

In Sleeping Better study, the talking therapy will be given to two different groups of people:

  • People with a confirmed diagnosis of psychosis
  • People at a very high risk of psychosis  

Sleeping Better is almost like two different studies in one! 554 people will take part in each group. Half will be randomly allocated to be given the new taking therapy for a period of roughly three months. The other half will continue with their normal care. This is a study design that is known as a randomised clinical trial or (RCT).

As well as seeing if people sleep better we will be looking to see if people’s mental health changes. As will additionally be looking at people’s ‘cognition’. ‘Cognition’ means things like memory, attention, and being able to think clearly.

We will additionally be carrying out up to forty interviews with people who received the Sleeping Better to see what they think of the therapy that they received.

Find out more about the Sleeping Better study.

You can listen to a podcast about sleep and mental health from one of the leads of the study called Prof Daniel Freeman.                              

You can view a short video about research into ‘ultra-high’ psychosis from Orygen in Australia.

 

Focus Study Logo

The FOCUS study

The FOCUS study is a five-year study which is funded by the Wellcome Trust. One of the aims of the study is to look at a new antipsychotic medication called KarXT. This medication works in a different way to most other antipsychotics. At present KarXT seems to have fewer side effects than many other medications for psychosis. You can read more about KarXT in this great blog from the Wellcome Trust.

There are some signs that KarXT may help people with problems such as memory, attention, and being able to think clearly. These are called ‘cognitive’ problems and are common in people with psychosis. This is important as ‘cognitive’ problems are common in psychosis and none of the antipsychotics currently that we have seem to help.

The FOCUS study has three parts:

  1. We will give KarXT to people with psychosis to see if it does help people with problems such as memory, attention, and being able to think clearly.  
  2. We will look at three other studies that are all studying different interventions for psychosis. These include a study of cannabidiol, memantine, and immunotherapy.  This part of FOCUS will look at if these interventions help people with psychosis and how exactly they might work.

In the final part of the study we will be carrying out interviews and focus groups with people with lived experience of psychosis to better understand:

  • How ‘acceptable’ people find KarXT as a medication.
  • How we can we better understand cognitive problems from a lived experience perspective.   

You can listen to an episode of BBC Radio 4 ‘All in the Mind’ programme in which the FOCUS study is feature.

You can read the research paper published in early 2024 reporting the effectiveness of KarXT for schizophrenia.