Yes.... language matters
The language matters campaign has been launched in the UK this week, as part of Diabetes Awareness Week, with the publication of the Language Matters document by the NHS.
https://www.england.nhs.uk/wp-content/uploads/2018/06/language-matters-language-and-diabetes.pdf
Reading through the recommendations, I feel very positive about the campaign and hope that it will lead HCPs to reflect on current practice. The last thing anyone wants is for the medical profession to become tongue tied around interaction, fearing that anything said will be criticised as negative or insensitive. But, recognition of the impact that language has on living with such a complicated condition is long overdue.
Language and interaction in various situations over the last 46 years has been mixed but I wanted to share examples of my best and worst situations and the lasting impact that it can have.
Three weeks into my stay in hospital following a rather dramatic diagnosis at the age of seven and a foot abscess, which stubbornly refused to heal, I found another type 1 on the children’s ward to pal up with. We had drawn a picture – a syringe with a no entry style symbol over the top - saying “NO!” to injections. I remember showing it to a nurse on duty, feeling great pride in our drawing. Her response caused huge shock. We were fiercely told off. How could we be so stupid to express such thoughts? We would always need injections to stay alive. I am not sure which was more shocking – the ferociousness of her response or being told so bluntly about my future. In 1972, parents didn’t stay with you in hospital, so there was no-one there to sooth the upset caused. All these years later, I still remember this telling off and how I was made to feel for expressing such feelings.
Ten years ago, as blood glucose values and management started to deteriorate (I believe through hormonal changes), I asked my GP whom I saw for annual check-ups about accessing insulin pumps. I was referred to the local hospital. I had started to keep very detailed written records listing blood glucose values, times & doses of injections, carbs eaten, exercise taken and so on, in an attempt to help both me and HCPs identify any possible solutions. It was suggested that I had some sort of issue with keeping such detailed records. Different types of long-acting insulin and dose adjustments did not stop the mid-morning hypos and mid-afternoon highs. However, it was suggested that were I to try to gain access to a pump due to my constant pattern of mid-morning hypos, it would lead to questions asked about my suitability to hold a driving license. After a very tearful session with my then GP when we seemed to be in a stalemate situation with the hospital, he stated that although he couldn’t promise anything, he would talk to the hospital doctor concerned. The hospital doctor decided that I should speak to the psychology service and if they were confident about me using a pump, she would agree to it. (This felt very much like a punishment but I was willing to do anything). The psychologist stated at the end of our first appointment that there was nothing to cause her concern in recommending me for pump usage. The hospital doctor said in passing, as if to justify the whole saga, that she was concerned that I would kill myself on a pump.
I have however had some very positive conversations.
Although I am now back under routine hospital appointments, I tend to see the team at my GP surgery either once or twice a year for bloods, medication review, flu vaccination etc. It is always the same team, which is lovely, as you feel they know you and you don’t have to start back at square one explaining your history at each visit. As I sat down at one particular appointment, the first question the practice nurse asked me was “how are you?” Diabetic clinic appointments will always be different to appointments you make to see an HCP when you are unwell, as they know why you are there and will often open the consultation by pulling up your latest HbA1c result and using that as a conversation starter. But she asked me how I was! We moved onto bloods eventually and she made some comment about recognising that I always seem to have everything well managed but she wanted to make sure that I was okay…. as a person… in my life…. It may not seem a big deal but it was; not because I particularly felt that I needed to talk about any issues but that she was asking about the whole of me. The door was open for me to talk about what I felt was important - a subtle but very important difference. It still makes me smile today when I think about it.
On another occasion, I was taking part in medical research, which required a 24-hour inpatient stay. The doctor in question suggested conducting the review that would normally be done at the outpatient clinic during this research visit, to avoid an additional visit to the hospital in several months time. I hate sharing my blood test results. Despite considering myself to be a very level-headed, confident person in most areas of my life, I never feel this way when reviewing blood glucose results with HCPs. Maybe this still stems from the issues described above but there will always be some lows and highs – you can’t avoid them – and I feel that past questioning has implied that I was remiss in not avoiding them. Some HCPs focus on individual readings expecting you to remember every last detail of the situation. I don’t! Life is busy and I have found a way to manage my T1 that works for me much of the time. I don’t record details of specific situations because as the saying goes, life gets in the way. I try to reflect in general on different situations or behaviour patterns that may have caused me problems but I don’t bother keeping detailed records because no two days or responses to situations are likely to be identical, so keeping that sort of detail to review is a waste of my time. And records should be for my benefit, right?
The conversation at this review was unlike that at any other I had had. The opening comment of “these are great” and that it didn’t look like the lows I was having were too low allowed me to put any potential feelings of defensiveness to one side. I worry that a case of verbal diarrhea followed – there had been so few opportunities to talk openly and honestly over recent years without feeling I was being judged, in what I felt was a safe space, I had a lot to say.
Again, it may not sound like much but when so much energy is put into trying to maintain blood glucose levels within a certain range, it is difficult not to take comments about how well you are hitting these targets, personally. For me, the psychological impact of this sort of interaction is lasting. If I’m having a day where I seem to be battling to keep blood glucose levels above 4mmol/l, rather than beat myself up for being a bit too low, I remember these comments and now feel positive that I’m managing to avoid dropping any lower.
And is language only important when you are trying to find ways to help people reach targets? What about if you feel they have achieved them? I hope consideration will be given to the interaction with all people with diabetes regardless of where you feel they are in the management of their condition. Opening up a consultation focusing on a positive HbA1c for example may easily lead an HCP to give off signals that everything is on track and wind-up discussions without the opportunity to talk generally about how things are. Fitting any chronic condition into your life is complicated and as you reach different stages in your life, the challenges and pressures on managing the condition can change. Even if your HbA1C remains unchanged between appointments, how you are feeling about the management of T1 with the other demands in your life can change significantly. The opportunity to talk about this is important and when you feel safe doing so with HCPs that recognise the demands in a non-judgemental manner, it can equip you with the mental strength to continue with the relentless daily management of the condition until your next appointment.
