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A few weeks ago, a painful and rapidly-swelling elbow forced me to pick up the phone and ask for help. I have rheumatoid arthritis, treated by immunosuppressive biologic drugs and complicated by other health issues. In ‘normal times' I am supposed to see my consultant every six months. But due to Covid-19, I had not seen her in two years and was muddling along by myself. So I wrote myself a script, made sure I had all the information I needed and psyched myself up to fight for an appointment with whoever I reached after navigating the hospital switchboard. Amazingly, I got through to my rheumatologist’s secretary at the first attempt. I explained my situation and, if I’m honest, was shocked by the compassion and understanding she showed me. “That sounds really difficult, I’ll get you an appointment as soon as I can.” She found me a phone appointment in six weeks time, apologised for the wait and the fact that it wasn't in person, and gave me the number of the rheumatology nurse helpline in case they could offer me anything else in the meantime. I couldn’t have felt better served or more cared for. It left me wondering why I hadn’t called before. And then I remembered the reasons - and realised this pleasant interaction felt like an anomaly. Why patients don’t ask for help There are so many reasons that stop patients proactively seeking the care they know they need, including: lack of clarity about who to contact or difficulty getting through. difficult past interactions that left you feeling dismissed and belittled. lack of follow-up when you have been in touch before. believing there are others worse off, that your needs aren’t important enough. previous harm or treatment mistakes. believing you will be ‘adding to the problem’ of the Covid-19 elective care backlog. Most patients, particularly those with a long-term condition, will identify with some of these reasons. But central to most of them is the idea of damaged trust, and it is many separate experiences that contribute to this erosion of patient confidence. Trust in the NHS, or any healthcare system, is a nuanced picture for each individual patient. But it warrants attention, as lack of trust has a huge impact on patients’ ability and willingness to access the healthcare system that, after all, exists to look after them. That in turn negatively affects their health outcomes and safety.[1] Two years into this pandemic, trust is more important now that it has ever been, but I fear that with every strained conversation and cancelled appointment, it is gradually ebbing away from patients. Patients and the NHS - it’s complicated In a healthcare setting, relationships are complex as they are not just about individuals, but a whole system. When I sit on the phone to a locum GP, both of us come to the consultation with loaded preconceptions - she of the thousands of patients she has seen, and I of the many doctors I have sat opposite before. The weight of the system sits heavy. The impact this has on experiences of care should not be underestimated. Increasing trust between patients and clinicians is key to patient safety, and for patients with long-term conditions, lack of trust can have a particularly profound effect. A good example of this is the UK Government’s vaccine rollout in Spring 2021. The universal public message was “Don’t contact us, we won’t forget you.” While I understand where this message came from - the need to protect immensely stretched NHS services - I wonder whether anyone in that comms meeting considered how that would be heard by some of the people it was aimed at. People who had been told they were ‘clinically extremely vulnerable’, who in some cases had spent months at home, alone. People for whom the vaccine meant freedom. People who are more likely than most to have experienced ‘being forgotten’ by the NHS before. In the end, anxiety about this led many, myself included, to call their GP to find out if they were ‘on the list’. In my case, I was accused of trying to ‘queue-jump’ while a friend at another GP surgery was told they were being ‘a nuisance’. My purpose in sharing this is not to have a go at individual staff, who were undoubtedly under huge pressure, but to highlight the impact that even brief interactions can have on a patient’s trust in their health services. I have certainly noticed that I am more reluctant to contact my GP since that incident. It was lack of trust that the system would look after me that made me call, and the call itself that further eroded my faith in the compassion and competence of the health system. Better communication builds trust People are often at their most vulnerable and anxious in healthcare settings, meaning that interactions have a particularly profound effect on how they view their treatment and the people involved. As a patient, here are four observations about how improving NHS communication could increase patient trust in the healthcare system. None of them are novel suggestions, but the need to prioritise them feels particularly important at the moment. Increase understanding of shared decision making Patients and clinicians alike need to really understand shared decision making and the role that patients have in ensuring their treatment is right for them. Shared decision making takes longer,[2] but it has proven benefits in reducing harm and improving outcomes.[3] We need better education for all parties about shared decision making if it is to become the norm for healthcare in the UK. It is encouraging to see organisations developing tools that can help patients prepare for consultations and understand which information will be useful to share, but we need to make sure all patients can access them. Address concerns and past harm A consultation needs to be about more than just the symptoms a patient is experiencing at that moment. Doctors who take time to understand where a patient’s hesitations come from are able to instil trust and help deal with those concerns. Allowing space for patients to talk about difficult healthcare experiences and feel heard can make a huge difference. This takes time, but those additional minutes are an investment in the patient’s health and future healthcare interactions. Trust works both ways, and as a patient I feel more relaxed and able to listen to a doctor’s expertise when they take my lived experience seriously. Identify and train the gatekeepers Clinicians understandably can’t be accessible to all patients at all times, so receptionists and other staff act as the gatekeepers to treatment. That’s why it is so important that these individuals communicate well with patients. A conversation that leaves a patient feeling unimportant and dismissed, even if it is polite, results in frustration and resentment, not just towards the gatekeeper but perhaps the whole department, hospital or NHS. Their role is vital in building patient trust and confidence, as my phone call with the rheumatology secretary demonstrates. Training and good systems that allow gatekeepers to offer the right information and support will help ensure patients don’t feel they are being denied access to the care they need. Maintain contact and foster transparency Many patients recognise the limitations placed on the NHS because of the ongoing impact of Covid-19; they just want to be kept in the loop. I have heard very little about my ongoing treatment from either hospital specialty I am under since January 2020. I have no idea whether anyone is looking at my regular blood test results or whether I’m even still ‘on the books’. I don’t know what I should do if I need support, and when I’m likely to be contacted next. Contact takes a bit of time, but it means patients don’t feel forgotten and gives them license to seek help when they really need it. Perhaps it’s time to invest in systems that make it easy to contact patients and bridge the gap between now sparse appointments. A question of resources Sadly, each of these solutions require something NHS services are very short of at the moment - time. NHS staff are under immense pressure every day, with record numbers leaving the NHS under the strain of Covid-related PTSD or simply having ‘had enough’. As staff become fewer, the pressure on remaining staff builds. Patients feel this strain and sense the pressure, and doubts about whether the system really has their back can grow. The issue of trust is a complex one with no easy fixes, but the more we can facilitate positive interactions and relationships, the more confidence all parties will have in our healthcare system. If trust can be built and maintained, patients like me will feel safer and more at ease when they need to access care. Of course, whether the government sees enough value in building trust in the NHS to properly invest in it, is another question altogether. References [1] F Chipidza, Rachel Wallwork and Theodore Stern. 'Impact of the doctor-patient relationship'. Prim Care Companion CNS Disord. 2015:17(5):10 [2] S Lenzen, R Daniëls, M Amantia van Bokhoven et al. 'What makes it so difficult for nurses to coach patients in shared decision making? A process evaluation'. International Journal of Nursing Studies. 2018:80:1-11 [3] C Okoli, G Brough, B Allan et al. 'Shared decision making between patients and healthcare providers and its association with favorable health outcomes among people living with HIV'. AIDS and Behavior. 2021:25:1384–1395