News

Co-producing mood clinic assessment forms: Part three – ensuring we support all our patients and service users

In her third article on co-producing online assessment forms for a forthcoming Mersey Care Mood Clinic, Research Associate Helen Page discusses her work with two M-RIC public advisors to understand the perspective of service users who are neurodivergent and service users who have bi-polar disorder.

Considering neurodiversity

Improving the referral form

Working with M-RIC Public Advisor Michaela Hollens, who is neurodiverse, provided valuable perspectives on accessibility and language.

Firstly, Michaela advised on the language used in a question on the patient referral form to ask people about any “adjustments” they may need.

“Please tell us how best we can arrange appointments in the clinic to help you. For example, in what ways could we make you feel more comfortable?”

Diversity monitoring form feedback

We then talked about the diversity monitoring form in detail to ensure equality of access to the mood clinic. I had struggled to find a suitable format and we used a standard form as a starting point, but we did feel it was outdated, might put off people from minority groups and could use more inclusive language.

Michaela’s key feedback was:

• Intersex was missing from “gender” (which could be re-named “biological sex”)
• A question about trans identity was too wordy and complex to understand. It could be changed to, “does your gender identity match that of the sex you were assigned at birth?”
• The sexuality question had no option to say “asexual” and limited other options.
• A question about people’s partnership status gave a lot of wordy options which were not easy to read, with a very busy visual layout.
• Why did the form ask about education level and employment status and how are these relevant to your treatment or access to the service? She felt they were being used as indicators of social class, when what really matters to people is how their mental health affects their quality of life and self esteem.

My conclusion was that form needed further development. For example, we need to explain why it is important to collect what are called “social determinants” of poor mental health.

Sharing personal insights

Michaela shared her experience of depression as an autistic person, describing a pervading sense of melancholy with other more reactive or clinical periods of depression which come and go. She recommended adding “melancholy” to the list of symptoms (or a way of capturing the dysthymia common to people with autism) and including anxiety symptoms for mixed anxiety and depression episodes.

We talked about the prevalence of anxiety in neurodiverse people and the impact it can have on people’s mobility – she said that her stress level can prevent her from leaving the house.

Refining the episodic depression form

Michaela suggested that we make it clear that people can still have long individual episodes and can complete the episodic depression form. In other words, we need to make it clearer that the first form is for people who have not got better over time (no distinct episodes with recovery in between) and the subsequent forms are for people with distinct episodes of depression, including episodes which lasted a long time.

We also noticed there are still some glitches in my coding for one of the online forms but we will work to fix it.

Treatment details

We talked about how the clinic is aiming to help people who have tried different treatments (medication and/or therapy) and not recovered. Michaela suggested asking for details of how (or if) people took their medication as they may not have taken it as prescribed:

She also suggested some changes for the talking therapies form – the word “course” of therapy was too ambiguous.

I am really grateful for her insights and hoped to further develop an inclusive diversity monitoring form.

Understanding the perspectives of people with bi-polar disorder

My next meeting involved working with M-RIC Public Advisor Matt who has bi-polar disorder. He looked at how the wording and layout could be adapted to fit with his experience and the different treatments he had tried.

Symptom reporting

He suggested having one page for ALL symptoms, rather than a separate page for different episodes of mania/depression, particularly as people could have mixed episodes when they are high and low or could have rapidly-cycling episodes.

He also suggested we ask, “tell us about your next episode” without specifying what kind of episode it was but have side-by-side boxes on a single page, with the left box describing symptoms of low mood and anxiety and the right box describing symptoms of high mood.

Hospital admissions

Matt highlighted that people could have both a voluntary admission and be sectioned under the Mental Health Act within a single hospital stay, so we need to add that “both” option to the form.

Medication use

We discussed people’s experience of taking medication and the need for clinicians to know how people took their medication as well as what they took – to be able to decide if they tried a therapeutic dose for long enough for it to be considered an adequate trial of a NICE recommended treatment. This is important to know for people with difficult-to-treat depression as there are lots of reasons why people might have tried medications and found them unhelpful.

Matt suggested changing the language on a question about whether people took their medication as prescribed. E.g.

“Did you stop taking them suddenly or come off them in a controlled way?”

“Were you supported to stop taking your medication, for example by your GP, or did you stop them by yourself?”

We could also add a third option to responses people give so it reads:

“took as prescribed/ altered to suit me/ both”.

Matt highlighted that we hadn’t included Neuromodulation treatments so an additional form may be needed.

Matt’s expert advice has been invaluable, and we wouldn’t be able to adequately capture the experience of patients without it!