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 medication that suppresses my immune system 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 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.

1. 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.
2. 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.
3. 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.
4. 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

1. Shared decision making
2. Personalised care and support planning
3. Enabling choice, including legal rights to choice
4. Social prescribing and community-based support
5. Supported self-management
6. Personal health budgets and integrated personal budgets.

Through these standard models we seek to create the balance between specifying a national, consistent standard and enabling flexibility for local adaptation and implementation. We also seek to align to or build on existing personalised approaches that have been adopted by both social care and health in many areas.

• Medical treatment can create lasting trauma in patients that may affect their future ability to seek out and receive healthcare.
• People with treatment related trauma need informed, sensitive, and supportive care in all healthcare settings.
• Help patients with treatment trauma feel involved and empowered during decision making.

Education into practice

• How could you establish whether your patient has experienced any treatment trauma?
• What support could you offer a patient who has experienced treatment trauma?
• How and when could you explore your patient’s concerns about treatments and any potential side effects?

• Ask the patient if they would like to have the conversation and how much information they would want.
• All healthcare professionals reviewing patients with chronic conditions, patients with more than one serious medical problem or terminal illness, should initiate shared decision making including advance care planning in line with patient preferences.
• Conversations about the future can and should be initiated at any point. The conversation is a process not a tick-box, and does not have to reach a conclusion at one sitting.
• Be aware of the language you use with patients and those they have identified as being important to them, and try to involve all the relevant people in agreement with the patient.

• “What matters to you?”
• “What’s important to you today?”
• “What is worrying or annoying you?”
• “How can we best support you?”

The outcome of these discussions is fed into the weekly MDT meeting and reviewed by all those involved in the patients’ care and then action points are agreed upon in response. Ask, Listen and Act.

This suite of questions has helped us listen to and action what matters to patients. These conversations have significantly changed the focus of the MDT, ensuring that discussions are centered on areas of greatest concern and importance to our patients. 

So, has it made a difference? Practice has changed and the suite of questions have become embedded in practice. 100% of patients, every week, are offered a "what matters to you?" conversation; patients are now presented in the MDT by stating their name, age and then what matters to them, before even their diagnosis or symptoms are discussed.  

Each week the team learns vital pieces of information that we would not have known, had we not asked these important questions. It has also helped professionals connect on a more personal level with patients and anecdotal evidence has shown an increase in job satisfaction. 

Key learning points

• You can’t guess what matters to patients.
• Some people find it uncomfortable talking about what matters to them.
• What matters to patients can change, so it's important to not only ask once.
• Asking what matters helps us to see patients more as people and connect with them on a different level.
• Three elements make what matter to you successful – Ask, Listen and Act. 

Discussion

• Asking patients "What matters to you?" is a powerful, simple question that can positively influence care, practice and job satisfaction. It costs no additional money. Research is now needed to investigate the financial implication of not asking "What matters to you?" and perhaps the emotional implication to our patients if we omit the question...
• Take a few minutes to think how you would answer: What matters to you today?

The letter she sent, and the patient’s response are reproduced here:

Dear XXXXX,

Thank you for your kind and thoughtful letter, it has been shared widely with the teams and the named individuals and has had such a positive impact.

I’m the head of nursing for the Surgery and Cancer Board and the wards and departments where you received care. I’m also one of the four deputy chief nurses for UCLH and one of my responsibilities is to lead the trust-wide Sisters Forum. It is attended by more than 40 senior nurses and midwives every month who lead wards and departments across our various sites. Last week I took your letter to this forum and shared it with the sisters and charge nurses. I removed your name but kept the details about the staff. I read your letter verbatim and then gave the sisters and charge nurses the opportunity in groups to discuss in more detail. I asked them to think about the words you used, the impact of care, their reflections and how it will influence their practice. Your letter had a very powerful impact on us as a group and really made us think about how we pay attention to compliments but especially the detail of your experience and what really matters. I should also share that this large room of ward sisters were so moved by your kindness, compassion and thoughtfulness for others.

We are now making this a regular feature of our Trust Sisters Forum and will be introducing this to the Matrons Forum – sharing a compliment letter and paying attention to the narrative, what matters most to a person.

Thank you again for taking the time to write this letter and by doing so, having such a wide lasting impact on the teams, individuals and now senior nurses from across UCLH. We have taken a lot from it and will have a lasting impact on the care we give.

The patient replied:

Thank you so much for your email and feedback. As a family we were truly moved on hearing what impact the compliment has had. My son said – “really uplifting”. I would just like to add that if you ever need any input from a user of your services please do not hesitate to contact me again