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Co-production of the Mood Clinic assessment forms: Part one – where do we start?

Helen Page is a Research Associate on the Mood Disorder Care Innovations work package. As part of her role, she has been working with M-RIC service user and carer representatives and public advisors on co-developing assessment forms for a new Mersey Care Mood Clinic. She has documented her journey to create the forms in a new series of articles. In this first article, she discusses how they started to take on the challenge of creating a pre-assessment process for the mood clinic that would save time. This would give patients more precious face-to-face time with their clinician.

 Firstly, what is the Mersey Care Mood Clinic?

Mersey Care NHS Foundation Trust is about to launch a new Cheshire and Merseyside Mood Clinic at Knowsley Resource and Recovery Centre on the Whiston Hospital site. The clinic will sit within the Neuromodulation Service. Appointments will be by referral only from either a psychiatrist, community psychiatric nurse or from a GP.

The mood clinic is aiming to help people who have difficult-to-treat depression. They may have already tried several treatments for depression (either medication or therapy, or both) but have not recovered. They may have lost hope of recovery or lost hope of finding some treatment that works for them. They might have found it difficult to tolerate unpleasant side effects of anti-depressants or maybe they have found it difficult to engage with therapy.

Why do we need pre-assessment questionnaires?

Pre-assessment questionnaires help us get to know patients – it’s a way of them telling their story.

We want to know about their experience of having depression, in their own words: How does it feel? What impact does it have on their lives? Have they had one long episode of depression lasting many years or lots of separate episodes, and if so, what caused those episodes? Did they seek any treatment? What type was it? Where did they go for help? Did it help? What has their experience been of trying different medications or different talking therapies? What kind of support do they have from other people? What kinds of stresses do they have in their lives? And so on…

Can you imagine going to mental health clinic for the first time? You have the weight of all this history, but very little time for your appointment. What do you most want the clinic to know about you? How do you tell them the detail of all that history? How do you know what is most important for them to know? What do you focus on? Can you trust them to really listen to your story and believe your experience? Will you have enough time to say it all?

I feel anxious just thinking about all of that!

We are designing pre-assessment forms to try to give people the chance to tell us their story, in their own time, before they first come to the clinic for an appointment. It will give patients some control and will make sure that clinicians know enough to ask the right questions when they meet people.

I worked with Prof Dan Joyce, who is Chief Investigator for the Mood Disorder Care Innovations work package and the Mental Health Mission’s national mood disorder network. We discussed some initial ideas and we created our first version of the forms. I learned a new system for creating questionnaires online, using a software tool called REDCap, to make the forms ready to “road-test” with our M-RIC service user representatives and public advisors.

Our first trial of the forms

We have two service user representatives who work closely with the research team on our Mood Disorder Care Innovations work package, one of which is Xiao Xiao. She is both an academic and an expert patient. She kindly spent two hours ploughing through all the questionnaire forms acting as a potential clinic patient. For each questionnaire, I asked: Do these questions make sense to you? Can you answer them? Do they need further explanation? Does any of the language need to change?

Our session uncovered the following:

• Language changes were important  for individual questions and terminology such as from “episode of depression” to “episode when you had poor mental health” for people who won’t be able to distinguish between depression, anxiety and stress. We also added in other options to the symptoms list to include words e.g. anxiety, panic, hopelessness, desperation more in line with experience, rather than a textbook definition of an episode of depression.
• Not sure options should be added to yes/no questions and we should state boxes could be left blank.
• Bugs in the system needed to be fixed such as understanding how to change an answer after you had ticked it.
• The diversity form wasn’t right – we realised it was not comprehensive enough and we needed to investigate and align to Mersey Care and NHS processes.
• Don’t assume – we should not assume people understand our NHS referral system as they may be new to the UK, and we shouldn’t expect people to know what our service jargon means.
• Guidance on completing the forms – we need to tell people how long it will take to complete the forms and that they can save them half-way through completion. Most importantly, we need to explain they don’t need to send them all at once.
• Understand there may be a language barrier – referring GPs should be asked if the person’s first language is not English or if they have any literacy problems and will need help to complete the forms.

It was a great first session and put us in a great place to make changes in time for a second stage of road testing with our service user and carer representatives. At this second stage, we got some incredibly useful feedback and brilliant suggestions. All of which I will cover in my next article which will be published soon.