The Integrator: Time to unmute the patient voice

In the rapid changes to services that systems have made in response to covid-19, the patient voice has effectively been silenced. Now there is rising concern about when the patient voice will be reinstated and in what format.

During the height of infection, law firms warned commissioners could face legal challenges from patient groups who feel their care was unfairly and unreasonably affected due to the widespread suspension of normal services. It warned that any consultation, no matter how short, would be of value.

This will also be the case for services that have been reconfigured under emergency conditions. Integrated care systems may need to unwind some of these rapid changes, such as the vast and sudden switch to remote consultations, to ensure they have not increased health inequalities.

Changes in London, for example, where some specialities such as a cancer have been centralised on a small number of sites, are already facing challenge from the London Assembly over the lack of consultation.

But not only does the NHS need to start consulting its population again, it must do so in a very challenging environment.

There is a growing feeling among some patient groups that they’ve been left in the dark about their care during covid.

A report by the Neurological Alliance found almost 50 per cent of patients with conditions like MS, motor neurone disease and brain tumours had seen their consultant appointment cancelled with no follow up booked in, and many didn’t receive rehab after surgery, or their usual access to physiotherapy to prevent serious deterioration in their condition.

Previously HSJ has reported that people with rare conditions had been deprioritised during the coronavirus pandemic, with one in five patients claiming the interruption to their care has been life threatening.

Growing anxiety, confusion and resentment is particularly felt by people within the 2 million-strong “shielding” group. One charity, that has been speaking regularly with those extremely vulnerable to covid, said the level of mistrust with the government is extremely high with conspiracy theories about its behaviour now regularly circulating.

There is also rising concern that charities will struggle to engage in consultations as much as they did in the past, as covid has dramatically cut their incomes.

In a webinar last month, National Institute for Health and Care Excellence’s deputy chief executive, Meindert Boyson, warned: “A lot of charity organisations will find it very difficult to continue to exist and even collaborate with NICE to the extent they did before. We need to think how to involve them [and] how to cope with patient communities who are in a particularly difficult situation now due to covid and furlough.”

There have also been concerns in the past that NHS consultations have relied on the “professional patient” – those people with the spare time that can be quickly approached when a provider or commissioner needs to show it has consulted on the changes it already intends to enact.

In the year in which the Black Lives Matter movement has finally made people realise how important it is to listen to the experience of those people less heard, and make changes based on what they say, that stance will no longer bear scrutiny.

Patients may be more distrustful, charities have less time to campaign or engage, and services already have rapidly changed, but if the NHS is to reduce health inequalities in its covid reset, patients must be both heard and listened to.