Experience of Care Week – Why listening to our patients’ concerns makes all the difference

Dr Gero Baiarda

In the current climate of ever decreasing funding, it is easy to forget that the NHS was established to treat people and not just their illnesses.

As an NHS GP, I admit it’s easy to become distracted by other tasks during a consultation. Our time and resources are so limited that it becomes tricky to give the patient in the room our full attention. With this in mind, the NHS is specifically targeting ‘experience of care’ for improvement.

Although good patient experience is linked with more effective treatment and disease resolution, the primary objective of the NHS remains clinical outcome. As the following case shows, this can lead to tragically unsatisfactory patient experiences.

Laurence’s Story

Laurence Withey was a popular 20-year-old Classics student. When he developed persistent abdominal pain, he returned home for further hospital investigations. Abi Withey remembers vividly being told repeatedly that her son was ‘too young’ to have a serious diagnosis and that his pain should subside in time.

Tragically, he went on to be diagnosed with a rare but now orange-sized tumour, and died seven months later. Every reassuringly dismissive remark felt poorly judged in retrospect.

Abi’s response was not to seek somebody to blame but to set up ‘Laurence’s Campaign.’ Her aim is to improve communication between young adults and medical professionals. (Read what happened at laurencescampaign.blog)

What are the obstacles?

We both recently took part in a fund-raising 24 hour Radiothon, and it was clear that Abi had already identified the constraints that hamper effective dialogue. Because of their huge influence on funding, clinical targets are still primarily aimed at treating the disease rather than the patient. The inevitable side effect is dehumanisation of healthcare.

Furthermore, although UK Universities excel at producing doctors who can make diagnoses, they spend very little time teaching us how to communicate them to patients. Clarification of complex medical concepts is an acquired skill, but as Einstein said, ‘if you can’t explain it simply, you don’t understand it well enough.’

With no incentives or time set aside for provision of a good patient experience, this fundamentally human aspect of healthcare can be forced by the wayside. I am not making excuses; I agree that it’s unacceptable.

So, how can we practically improve the Patient Experience?

Instinctively, NHS staff understand the importance of listening to patients and involving them in decisions, but it is difficult to translate these good intentions into something practical. Invariably, we resort to collecting copious patient feedback, but this usually results only in a mountain of data we have no idea how to use.

What I have found refreshing about Laurence’s Campaign is that the motivating force is a mother’s love for her son. Abi already knows what she wishes had gone better in Laurence’s case, and therefore makes not only observations based directly on her own experience but also suggestions that would have helped in his case.

Why is there sometimes a failure of communication between young adults and clinicians?

We should not forget that young adults, especially University students, are unaccustomed to looking after themselves. There is no longer a parent there to tell them that they need to seek medical advice, and they are often reluctant to access clinical care for fear of ‘wasting the doctor’s time.’

In Laurence’s case, his youth also counted against him; it’s true that we don’t expect young people to become seriously unwell, but Laurence’s case shows that something being rare does not mean it never happens. After medical reassurance, there often has to be a marked increase in symptoms before young adults will ‘bother’ the doctor again even if they remain worried.

What can be done?

Laurence’s Campaign aims to establish communication skills courses and counselling support for clinicians.

Breaking bad news takes its toll, and the natural response is to develop deliberate detachment as an act of self-preservation. This can only further hinder communication. UK doctors are not obliged to offload regularly with a counsellor as they do in the US, but access to this facility would vastly improve the patient experience.

There are also plans to provide advocates for young adults. These volunteers would accompany the uncertain to consultations with medical professionals. Just the presence of another adult is often enough to give patients confidence to ask questions that might otherwise be kept to themselves.

I often wonder why doctors do not routinely print off and hand to the patient a copy of the notes they have just written. Just this simple act is enough to expel all uncertainty about what has been said. I frequently do this for my dermatology patients so there is no doubt as to what cream is intended for where and how often.

GP surgeries are now required to have Patient Participation Groups, but young adults are a very particular subgroup. Although it is true that collaboration between the NHS and national charities helps implement patient-centric changes, it is likely that focusing on working only with registered charities may overlook the needs of young adults altogether, not to mention the invaluable contribution to be made by smaller campaign groups.

And finally…

When I began work as a GP, I hoped somewhat naively to be able to help everybody. Sadly, clinical outcome is frequently something outside my control. It is not unreasonable, however, that every patient should expect NHS staff to listen properly and treat them with dignity.

Experience of Care week serves as a reminder of what the NHS was established to achieve. Laurence’s journey was undeniably heart breaking, but it serves to remind us of exactly why ensuring a good patient experience is invaluable.