Ninjabetic – It’s not just a questionnaire…

Recently a friend and I were discussing her PhD subject. We talked about the use of questionnaires for research purposes and we agreed that questionnaires which could provoke negative thoughts and feelings from people with diabetes need to be followed up with the offer of a debrief and support. One reason for this is that questionnaires we are given often open up deeper questions and emotions that perhaps we don’t often bring to the surface. I’ve written about this before and I have openly declared that I wouldn’t fill in another PAID (Problem Areas In Diabetes), or similar, questionnaire until the offer to talk through my response is given. This doesn’t need to be with a psychologist – I’d be pushing my luck to expected that – but I do feel there needs to be ongoing support available from a healthcare professional should any emotions arise as a result of answering, what can sometimes be, quite invasive and sensitive questions.

Talking with my friend made me think back to a time that I’ve pushed to the back of my mind. I was seeing my GP for my diabetes, and after my second or third appointment he asked if I wouldn’t mind helping his son with a project; his son was a medical student wanting to talk to someone newly diagnosed with diabetes. Bearing in mind I was 16 and still very new to the world of chronic illness, I didn’t know which feeling these questions may evoke (I’m unsure if he used an official questionnaire or his own). At such a confusing time I didn’t know how I felt about diabetes; I was so new to it but I knew that I didn’t want to think about how hopeful I felt about my future on a scale or 1-4, or how depressed I felt about living with diabetes. I remember feeling that I needed to get away from that situation, as an already confusing and difficult part of my life had been laid out in front of me on a piece of paper and there was nowhere to turn to make sense of it.

My next experience was filling in an official PAID questionnaire; these are designed to measure diabetes specific emotional distress. It was presented to me in an appointment with no explanation of what it was or why I was asked to complete it. A few questions in and the tears started to fall. The questionnaire was taken away, incomplete, and the appointment continued. There were no questions asked about what had caused my reaction.

In no way am I suggesting that these questionnaires should not be used, in fact I think they could be an incredibly valuable tool in our care

I have recently been told that I shouldn’t use my own anecdotal experience to suggest change and in a way I think this is a fair point, however my experiences are real and they contribute to a bigger picture. With that I took to social media (Facebook – allowing for an in-depth response) to ask about other people’s experiences, both local and further afield. Very few people (from the 31 responses I had), received a positive outcome from a PAID questionnaire. PAID was described as depressing, emotional, a paper exercise and a tick box. Some talked about the questionnaire results preventing them from accessing technology, with no suggestion from their diabetes team as to how they could change that. The vast majority of people said that they had no feedback whatsoever from the questionnaires and a few people said if their results showed they were suffering from depression, there was no offer of help or support to address that.

In no way am I suggesting that these questionnaires should not be used, in fact I think they could be an incredibly valuable tool in our care, however I think the way they are implemented needs to change. Would we be given insulin without explaining what it is and the effect it will have? Would we be given a glucose meter without being told what the results mean and what will happen based on them? Why should a psychological assessment be any different? Could questionnaires help people to understand their thoughts, feelings and behaviours better? Could they ensure access to technology is delivered in the safest way for the patient, rather than just denied? Could they provide healthcare professionals with the insight they need into why patients struggle with certain aspects of their health? PAID was designed for clinicians to identify diabetes-related emotional distress in their patients and to explore options for overcoming any issues – an important part of our ongoing care and self-management – am I wrong in wanting this to happen as it should?

As always, I’m aware that change needs suggestions as to how it could happen. Could those feeling overwhelmed be directed to the Diabetes UK Careline? Could those who haven’t accepted their diabetes be directed to self-help tools or literature? Could those feeling alone with diabetes be informed of the local peer support groups or the many social media sites set up by patients to help with this? Could those feeling burnt out be directed to a local service where they can discuss this with trained professionals? I’m aware that change takes time and money, however there are many suggestions which could be very effective.

I’ve recently been told that I can’t have it all when it comes to my health, but in this case there are options for patients whose results show that they need support; options that will take minutes, if not seconds, to suggest… and a suggestion costs nothing. Somethings it’s not the huge extravagant overhauls of services that we need. What harm will come from trying vs the harm that may come from not?