I am writing this at a time when the relationship between the NHS and the patients it serves has been profoundly disrupted. The COVID-19 pandemic has taken a well-documented toll in terms of lives lost and, we increasingly understand, serious long-term effects for some people, as well as short but highly unpleasant periods of illness for many. Drastic steps were undeniably needed to contain it. But it is equally undeniable that these emergency measures have themselves taken a significant toll on patients.

From May to August this year, nearly a thousand patients told us their stories by responding to our online survey. Whether the emergency measures were always the right ones, or were done as well as they needed to be, will undoubtedly be investigated in the future. For now, we want to use our new report to set out patients’ experiences during the first stage of the coronavirus emergency, and draw lessons for what might be done this winter and beyond.

The testimony we received from patients is a rich mix of stories, covering care quality of all shades. Some themes emerge strongly, however. People told us of their frustrations in being cut off from the support that had previously been essential to their daily lives. Many have had treatments and other support postponed or cancelled; in some cases this may be understandable, but a lack of information about how services would restart left people in the dark (although plans to restart services have to a large extent been set out since the survey period). Disabled people and people with long-term chronic illness told us they feel left behind.

Government letter didn't arrive for eight weeks and so I didn't know what help was available or who to contact.

Just been left to manage alone. No shopping priority. Gone into survival mode: food and shelter. Not in the shielded group but high risk of dying. Just been left.

As an unpaid carer, trying to look after two people who really don't get what lockdown means and what we have to do to stay safe, I am finding the stress levels grow daily. Trying to keep others happy and feeling safe is emotionally draining and there is no release valve.

There were some good experiences too. People told us about ways in which mutual aid groups, neighbours, faith groups and friends helped them with essential tasks like shopping, or just to stay in touch with other people. Government initiatives such as food parcels worked well for some, and there were stories of helpful and compassionate care.

The services I access have responded really well, adapting protocols to keep me safe when I visit for treatment and to minimise my hospital visits. I have received support by email if needed.

But respondents also often told us about times they didn’t feel listened to, or didn’t feel safe. There is a risk during crisis situations that the views and wishes of patients get lost in the need to get things done. This includes whether patients feel respected, if they have enough information, and if they feel they have positive relationships with professionals. When these things don’t happen, patients can be left isolated and afraid.

In my local hospital I noticed very few staff at all levels wore any visible indications of their name let alone their function. When you can see only the eyes of a person caring for you, can’t hear their voices, it was most frightening.

The COVID-19 crisis is ongoing, and there are likely to be new health crises in the future. We think government, the NHS and others need to listen to patients when planning their responses. There needs to be recognition that some communities and groups will be harder hit than others, or will be affected in different ways; services will need to be available to them in ways that work for them. Good patient experience must remain a priority, so patients and others feel safe, well informed and respected. People need support for their mental health and wellbeing, and systems need to be in place so that no one – including people caring for others – is left isolated. No one should be unable to be with their loved ones at the end of life, unless it is absolutely, truly impossible.

She was left on a ward on her own for a week, terrified and lonely, and she died alone. The ward did not tell the daughter until a few hours after she had died. I could not believe they were so inhumane… it was so tragic that all the work about dignity of dying has gone out the window for COVID-19.

The responses to our survey give particular insight into the experiences of older people with long term conditions. Most of the people who responded to our survey were aged over 55 and were white, 65% being women. We know this means we are missing the voices of some communities and groups, including younger people, Black, Asian and other minority ethnic people, and those who identify as LGBTQ+. Some of these groups already face barriers to accessing safe and high quality healthcare, and have been disproportionately affected by COVID-19. We are committed to widening our reach and membership as we grow.

Finally, I’d like to thank all of you who took the time to share your experiences, good and bad, at an often difficult and confusing time. We will be using what you told us to make sure that the Government, NHS and others understand the impact of their decisions on patients, both for their future planning and when work is launched to review the decisions made in this time of emergency.

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.