The Prime Minister’s announcement today falls some way short of a full lockdown for England, despite the potential for a rapid increase in COVID-19 cases outlined by Professors Vallance and Whitty on Monday. The devolved nations are imposing slightly tougher measures in some respects. If case numbers keep rising, we can expect more restrictions later in the autumn: there is no doubt that we are still living in an emergency period.

However, patients have told us about the heavy toll that the initial response to COVID-19 took on them. It’s vital that we do better this time around: the same problems must not be inflicted on patients a second time.

In our recent survey, patients gave us powerful and sometimes upsetting evidence of their experiences during lockdown. It was clear that those already most disadvantaged were hit hardest: people with disabilities and long term conditions reported feeling left behind, as other groups were prioritised. Some patients were left fearful to try to access care, others simply unable to; in both situations, some paid with their health and even lives. Patients were left with concerns about their health conditions worsening, and with a mounting toll on their mental health.

The NHS must show that it has learned lessons from the first wave. Fears of hospitals being overwhelmed were not borne out: the Nightingale hospitals and ‘army’ of additional staff were significantly under-used. We can see now that if we can stand up the same level of capacity again, we will not need to repeat the mass discharges and treatment cancellations that did so much harm last time, with so many people sent out of hospitals to care homes that then suffered fatal outbreaks of COVID-19. We expect the NHS to be able to continue with a substantial volume of elective care, using Nightingale hospitals and clear designation of ‘hot’ and ‘cold’ sites to enable COVID-19 treatment and regular treatment to continue at once. The NHS must focus on reducing and reversing, as much as possible, the harms caused by the backlog created earlier this year.

A further difference we need to see from the first wave is the way in which the NHS listens to patients. In acting so quickly last time, the NHS threw any notion of involving patients in decisions about their own care out of the window: what’s most alarming about that is how many NHS leaders appear to have regarded it as a major breakthrough, and something they want to keep doing over the long term, seemingly with no regard at all for what it means for patients. This must not be allowed to happen: patient involvement needs to be baked much more fully into the NHS when it rebuilds for the long term, but even during this ongoing emergency the NHS must get much better at considering the impact of its actions on patients, and involving them in decisions about their care.

So, now is the time for the NHS to set out how it will maintain momentum on its restart of regular services, how it will deploy the extra resources that we know it can mobilise, how it will consult with patients, and how it will assess the impact of its emergency measures on patients. To help it, our report Pandemic Patient Experience contains seven key principles that we recommend the NHS should follow.

  1. Recognise from the outset that the impact of the crisis will fall hardest on those who already face discrimination and inequality, including Black, Asian and other minority ethnic groups, disabled people, carers, women and gender minority populations and those living in areas of high deprivation, and that these inequalities will affect some people in combination
  2. Maintain the principles and values of patient choice, shared decision making and voice, so that services are shaped by patients, disabled people and others who most need them
  3. Ensure there are fully resourced services available to help people maintain people’s mental wellbeing, to treat mental ill health, and to ensure that no one is left isolated
  4. Ensure carers get the support they need, including emotional support, to continue to care for their loved ones
  5. Provide clear, concise and timely communication, updated regularly, about the impact of the crisis on support and services, what is available in the interim, and when and how services may begin to restart
  6. Ensure access needs are respected and met, including providing materials in different formats and languages, including signing, descriptions, captioning and transcription for all official visual content, and that people are able to access support offline if they do not have access to the internet
  7. Maintain compassionate end-of-life and bereavement support services, with clear communication between staff, patients and others, and the opportunity to be with friends and family members unless totally impossible.

Rachel Power
Chief Executive

The Patients Association has been supported to fund this survey and report through sponsorship provided by Novo Nordisk and ENGINE | MHP. Novo Nordisk and ENGINE | MHP have had no influence over the development of the survey or the content of the report.