Research Associate Helen Page

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Co-producing mood clinic assessment forms: Part two – an initial road test


In her second article on co-producing assessment forms for a forthcoming Mersey Care Mood Clinic, Research Associate Helen Page discusses the insightful feedback and suggestions made by our M-RIC service user and carer representatives.

Please note in this article some service users have asked to be referred to by their initials rather than first names.


Our next stage of the development process was a further session with two Service User and Carer Representatives (SUCRs) Jeanette and CB, our expert patients.

It was quite an emotional day – sharing life stories; experiences of depression and experiences of asking for help (some good, some awful). They provided an extremely useful and honest assessment of the initial online forms we are asking patients to complete when they are referred into the mood clinic.

Feedback after reviewing the forms

They said:

  • Clinicians need to ensure they read the information on the forms thoroughly, so patients don’t have to repeat themselves.
  • Bad memories could be triggered by being asked for specific details about episodes of depression.
  • Depression can start in childhood – a lot of the questions assume that your first episode of depression was as an adult.
  • Memories can be vague or missing because of trauma.
  • It might not be easy to see your life in separate episodes if you have had depression for many years.
  • Completing a form may be too difficult and it may be easier to tell your story verbally. Ask at the beginning of the process: “Would you like a phone call or are you okay filling in these forms yourself?”.
  • We may need a different form for people with long-lasting (rather than episodes of) depression.

This feedback helped me consider staffing for the clinic. There needs to be someone available to support patients who is familiar with helping patients complete medical research questionnaires.

Considering language

Another useful insight was to add and place stress on the words, “If you can, describe your experience of depression, in your own words.” It’s so important to realise that this process of remembering isn’t easy and can be upsetting. In CB’s words, “people might not want to go there”.

On advice of our SUCRs, I took out a question asking if people could identify what caused each episode of depression. They felt this could be too triggering and is a lot of personal information to add to an initial form, when you don’t yet know the person who will be reading it.

Capturing information about medication and therapy

We had quite a long discussion about the forms capturing people’s use of (psychotropic) medication. I had designed them so that people would fill in a separate form for each medication they are currently taking and have previously taken. The forms asked about dosage, length of time they had taken the medication, side effects, how effective they felt it had been, withdrawal effects etc.

Both SUCRs agreed they could see the point in asking specific questions about current medication (and from their own experience, this could mean filling in up to five of these forms), but when they looked through the list of all the named medications, it didn’t make sense to fill in a separate form for all their past medications. Instead, they suggested a single form for all past medications with tick boxes and more detailed questions underneath. That’s so much easier!

Similarly, they suggested a single form for therapies rather than multiple forms with questions such as:

  • “Have you tried any of these therapies? Tick any you have tried…”.
  • “Which of these therapies was the most helpful and why?”
  • “Why do you think they worked or didn’t work?”

Additional suggestions from our SUCRs included:

  • Asking “have you identified any therapy that you think would help your treatment?
  • Removing the question, “Did you find anything difficult about engaging with your therapy?” as it sounds judgemental and a later question better captures this information.
  • Changing a question about whether people felt they had recovered after receiving therapy to asking if they felt their symptoms continued after therapy finished.
  • Adding in more focus on people’s own resilience and coping strategies by asking, “When you have found things difficult in the past, what have you found has helped?”

Overall, it was a thorough but enjoyable session and provided me with vital information to further edit the forms. I am so grateful for their willingness to co-design these assessment forms to make experiences better for others using their unique expert-patient insights.

In the next article, I will look at how we ensure the forms are suitable for service users who are neurodivergent and service users who have bi-polar disorder.


Read more

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