Every Story Matters: Healthcare – In Brief

The UK Covid-19 Inquiry is an independent public inquiry examining the response to, and impact of, the Covid-19 pandemic to learn lessons for the future.

The work of the Inquiry is divided into separate investigations, known as modules. Each module is focused on a different topic, with its own public hearings where the Chair hears evidence. Following the hearings, a module report is published, which contains findings from the evidence collected across the module and the Chair’s recommendations for the future.

How Every Story Matters fits into the Inquiry’s work

The Inquiry is keen to understand the full picture of how the pandemic impacted lives and communities right across the UK. Every Story Matters is an opportunity for everyone to share their experience of the pandemic directly with the UK Covid-19 Inquiry.

Every story shared with us will be anonymised, analysed and brought together into themed Every Story Matters Records. These Records are entered into evidence for the relevant module and are published on our website once they are introduced into the relevant hearing.

This summary relates to the Every Story Matters Record for Module 3, which focuses on the impact of the Covid-19 pandemic on healthcare systems in the four nations of the UK.

Introduction The Every Story Matters Healthcare Record brings together people’s experiences shared with us: online at everystorymatters.co.uk, in person at drop-in events in towns and cities across the UK and through targeted research with specific groups of people. It does not represent the experience of the whole of the UK population but rather that of the people who have chosen to share their story with us. Future Every Story Matters Records will focus on different aspects of life during the pandemic such as social care, financial support, children and young people and other topics. This summary sets out some of the experiences shared by people about healthcare during the Covid-19 pandemic. We heard from healthcare workers, patients and their loved ones, and about the devastating loss experienced by those bereaved during the pandemic.

Experiences of the bereaved, patients and their loved ones

Some of the areas people told us about were:

Access to care

• Across healthcare settings, patients found accessing care during the pandemic extremely difficult and stressful. There was a palpable sense of fear and a reluctance on behalf of patients, and their loved ones, for them to go to hospital. This fear of Covid-19 delayed many seeking treatment for both Covid and non-Covid conditions, which led to health conditions becoming worse and people’s health deteriorating.
• Many people experienced delays at each stage of the process of accessing healthcare, including speaking to their GP and waiting for an ambulance. Once they were able to access care however, patients often experienced very good and empathetic care from tired and over-stretched staff. Many patients and loved ones found using healthcare services to be a lonely and isolating experience.
• Those with additional needs found accessing care especially difficult. For example some d/Deaf people were unable to access interpreters and experienced communication challenges due to the use of face coverings.
• Where care was perceived as less compassionate or was less accessible than before the pandemic, this led some people to make alternative choices. For example, some women decided to give birth at home rather than in a hospital.

Changes to healthcare

• Many bereaved families and friends faced significant challenges in supporting their loved ones at the end of life. Restrictions on visits meant many were unable to be present with their loved ones. Families and friends highlighted several challenges with end-of-life care, including reduced quality care and a lack of clear communication and transparency about end-of-life decisions, leaving some bereaved individuals with lasting feelings of guilt and difficulty in processing their loss.
• The restrictions placed on visiting maternity and other healthcare services also left patients and loved ones feeling isolated and missing out on opportunities to be close to the patients when they were most needed. New mothers told us how they felt lonely and afraid, while those who had experienced birth before the pandemic described how surreal it was to be alone during the pandemic.

Long Covid

• Long Covid continues to have a dramatic and damaging impact on many people’s lives. Many people with Long Covid were disappointed, angry and frustrated with their care. Healthcare services for Long Covid developed over the course of the pandemic but were inconsistent and difficult to access.

Shielding

• People considered clinically vulnerable were advised to shield for open ended and often long periods of time. They were no longer able to go about their everyday routines and activities, such as meeting with family and friends, working or carrying out their hobbies, which left them feeling isolated, lonely and fearful.

Experiences of the healthcare workforce

Some of the areas people told us about were:

• Throughout the pandemic we heard how many healthcare staff went above and beyond the usual requirements of their job. Both healthcare professionals and patients acknowledged they were working in extremely difficult circumstances. In the early part of the pandemic, there was a shared sense of purpose among healthcare staff, despite the challenges and the need to work in very different ways.
• Healthcare professionals across all settings told us how challenging it was to find appropriate well-fitting PPE which was necessary to protect them and their patients.
• People were often left exhausted and suffering from poor physical and mental health due to longer working hours, the death and distress they encountered, and other work pressures such as changing routines. Some staff faced difficult moral dilemmas, including life and death decisions, without sufficient support. Many staff found denying relatives a chance to say goodbye to loved ones especially difficult. Staff were often asked to work to different working patterns and in unfamiliar specialisms without sufficient training. Covid-19 cases among staff further impacted morale and absence rates, which increased pressure on remaining members of staff.
• The pandemic led to the introduction of some innovative solutions and greater adoption of technology across the healthcare systems.

For many, the impact of the pandemic is still felt, and they have not returned to their pre-pandemic lives.

Government guidance and resources

People told us:

• Lack of preparedness in healthcare systems resulted in a chaotic situation which left patients and staff feeling frustrated, angry and fearful, particularly in the early stages of the pandemic.
• An absence of good quality, well-fitting Personal Protective Equipment (PPE) left staff, patients and carers feeling vulnerable. The initial lack of adequate testing for Covid-19 impacted safety, working relationships and communication.
• Some healthcare workers spoke about the challenge of implementing frequently changing guidance For some, this reduced confidence in the guidelines added to a sense of chaos and confusion across healthcare systems. We also heard how inconsistently applied healthcare guidelines left some patients and their loved ones feeling confused and unfairly treated.

In summary The pandemic had a life changing impact on patients, bereaved loved ones, and healthcare workers and for many, this is still felt today. People reported that the response to the pandemic impacted their trust in the UK government and in the healthcare systems. It was widely reported there was insufficient planning and management in healthcare systems. People reported that frequently changing guidance and lack of consistency across healthcare settings, resulted in chaotic and unfair treatment of patients and put additional stress on healthcare staff. There were however numerous examples of the care and compassion afforded to patients and staff who often went above and beyond in extremely difficult circumstances. People who contributed to Every Story Matters expressed concern that ongoing pressures affecting UK healthcare services may limit their ability to adequately prepare for the next pandemic.