Intended for healthcare professionals

Rapid response to:

Editorials

Patient and public involvement in covid-19 policy making

BMJ 2020; 370 doi: https://doi.org/10.1136/bmj.m2575 (Published 01 July 2020) Cite this as: BMJ 2020;370:m2575

Read our latest coverage of the coronavirus pandemic

Rapid Response:

Lack of shared decision making during covid-19

Dear Editor,

This is a very important piece highlighting the lack of shared decision making and patient involvement during the covid-19 pandemic. The impact for patients, who have had no choice but to interact with health services during this time, has been profound on the level of care delivered.

As I have Type 1 diabetes, being admitted to hospital always strikes me with fear. I worry that my diabetes management and control will be taken away from me. Being an inpatient during the covid-19 pandemic however was even more concerning. Having all of the same concerns as usual, plus the added worry of infection and stretched services.

When the UK lock down was announced I was also 8 months pregnant. I had spent the last couple of months creating a detailed plan for my diabetes management during my stay in hospital. This included ensuring my diabetes was well managed through the induction process, agreeing on when I would be able to self-manage my diabetes and when my healthcare team should take over. I felt supported and that my preferences were being taken into consideration, making me feel much more at ease for my stay.

Going into hospital for my induction I knew that the hospital would feel very different to normal, but I had not imagined that this meant all my shared decision making and plans would be disregarded. My plan detailed the importance of me needing to have as much information as possible about food type and timing to help me manage my diabetes. None of this was communicated which then resulted in me having a very high blood sugar during the induction. This was potentially very dangerous both for me and my baby. We were told that a c section would have to happen due to my unstable blood sugars. I had to explain the reasons why to the healthcare team. Luckily, they listened and understood but all of the work we had put into the plan seemed wasted.

During my stay, health professionals spent as little time with us as possible. They would only come in the room to do the tests they needed. There was no discussion on how they could help manage my diabetes other than a ‘what is your blood sugar level?’ through a slightly opened door. I would try to ask questions whilst they were doing tests which they often answered as briefly as possible whilst rushing out of the door. I understand that there may have been a fear of being close to patients, but I wish they would have shared this. I felt alone and found the first few days managing my diabetes, a new baby, and difficulties in feeding very challenging.

I felt so disappointed that all our planning was cast aside. I felt like my care was being completely dictated by my healthcare team, rather than my wants or preferences. I understood that things in hospital would be different, but I never imagined we would feel completely cut off from all decision making.

Becoming new parents during the pandemic has meant we have missed out on so much, but our relationship and trust with health professionals has also been greatly affected. Since the birth we have only received a letter from our health visitor to say they will be in touch, at some point. I can only hope that patients will now be involved in the planning for how health services will now pick up these families with new additions.

Competing interests: No competing interests

14 July 2020
Emma J Doble
Patient editor
BMJ
Derbyshire, UK