This is the 2019/20 edition of State of Care
It has become clear that COVID-19 has had a disproportionate effect on some people with protected characteristics: people from Black and minority ethnic (BME) backgrounds, older people, and people with some long-term health conditions and other disabilities have been hit harder by the pandemic and its knock-on effects. These unequal effects have affected health and social care workers as well as people in need of care.
While we are yet to understand all the reasons for these disparities, they do serve to highlight the inequality in health outcomes that existed before the pandemic. For example, we analysed data on colorectal cancer pathways, which suggests that patients from BME backgrounds and from the most economically deprived backgrounds are at disproportionate risk from late diagnosis and are less likely than average to access the national screening programme.
This raises questions about whether people from BME groups and those who are from economically deprived backgrounds are less likely to have easy access to other types of screening or early interventions, including those that might put them at greater risk from COVID-19. People from all BME groups represent 36% of those admitted to critical care services with COVID-19, and are up to twice as likely to die from the disease in England, compared with people identified as White British.
Analysing our data about death notifications in adult social care from 10 April to 15 May, we found that the proportion of deaths in all adult social care services due to confirmed or suspected COVID-19 was higher for Black (49%) and Asian (42%) people compared with White people (41%) and people from mixed or multiple ethnic groups (41%). This difference increased when looking at care home settings only, where 54% of deaths among Black people and 49% of deaths among Asian people were related to COVID-19 compared with 44% of deaths of White people and 41% for mixed or multiple ethnic groups. We also received a 134% increase in notifications of deaths of people with a learning disability, compared with the same period the previous year. These notifications were from providers registered with CQC to provide care to people with a learning disability. Of these deaths, 53% were from suspected or confirmed COVID-19.
Along with others, we have raised concerns about a lack of testing for adults with a learning disability and autistic people living in residential care settings, and the staff who work in them. While access to testing for this group was introduced from early June, a gap remained for people who live independently and receive care in their own homes.
A survey by the Alzheimer’s Society found that 76% of care homes reported that GPs have been reluctant to visit them , and another survey by the Queens Nursing Institute found that 32% of care home leaders found it difficult to access GP services on behalf of the people they care for. These indicate that older people, those with dementia, those with a learning disability and autistic people living in residential adult social care settings may be at greater risk from general health problems being left untreated, as well as COVID-19.
In a joint statement on 7 April, we expressed concerns that advance care plans, sometimes including Do Not Attempt Cardiopulmonary Resuscitation orders, were being placed on groups of older people and disabled people without individual discussions taking place to make sure this was appropriate. These plans should only ever be made on a person-by-person basis.
We made another statement in August when it became clear that some older and disabled people living in care homes were not getting access to urgent hospital treatment, and this may have been based on assumptions that some groups are less entitled to care and treatment than others rather than on clinical need. Where the right processes are not followed, this may indicate an attitude that older and disabled people’s lives are worth less than others’. This would be unacceptable and discriminatory, and may breach people’s human rights.
Organisations and individuals must reflect on these issues, put in place protocols to eliminate them, take steps to eradicate the underlying causes, and move towards normalising discussions of advance care plans with individuals.
In our third COVID-19 Insight briefing, published in July 2020, we talked about how collaboration has been essential to creating an effective response to the pandemic. This may be all the more important for people with some protected equality characteristics, who we know can be more severely affected when organisations within the health and social care system do not work well together.
Pregnancy and maternity are protected characteristics under the Equality Act 2010. Disparities in maternal and neonatal mortality rates for women from BME groups are persistent and well-documented. Women from minority ethnic backgrounds have poorer experiences of care and face additional maternity risks, with maternal mortality rates significantly higher than for white women. These disparities have only been exacerbated by the pandemic: research shows that Black women are eight times more likely to be admitted to hospital with COVID-19 during pregnancy, while Asian women are four times more likely. We support the work of the Maternity Transformation Programme Board, who are developing a national equity strategy for action to tackle this important challenge.
We carried out engagement via surveys and interviewed groups of people with different equality characteristics, to find out about their experiences of care since the beginning of lockdown measures. We heard there was a feeling that communication from the health and care sector had not always been done well, with some people left feeling uncertain about what services were available to them during this time.
We heard about overcrowding on wards for people with mental health conditions, raising concerns around infection control. More positively, of the people we surveyed, 73% of those who had tried to access gender identity clinics had found it very or somewhat easy to do so, and of that group, most people felt their needs had been met.
In our letter to the chair of the Women and Equalities Committee earlier this year, we stressed that blanket measures, such as a total ban on hospital visitors, had a disproportionate effect on some faith groups and people who do not speak fluent English and their families. This may also have had an impact on the confidence of people from these groups in the NHS as a whole; where people do not feel their needs are being taken into account, they may be less likely to seek help for health problems, whether related to COVID-19 or not.
In our survey of the experiences of hospital inpatients during April and May 2020, we found worrying indications that some groups of people have found their hospital stays more difficult than others:
- Across several of the questions we asked, people with dementia (including Alzheimer’s disease) had worse experiences:
- They were least likely to say they were involved in decisions about their care or received answers to questions that they could ‘always’ understand
- They were least likely to ‘always’ understand staff who were wearing PPE.
- Among groups with long-term health conditions, they had by far the lowest rate of feeling able to keep in touch with their families during their stay in hospital (23% said they ‘never’ spoke with friends or family while in hospital).
- Deaf people, those with a learning disability, people aged over 85, and autistic people also found it particularly difficult to understand staff when they were wearing PPE.
- Younger adults were the least likely age group to report feeling they were ‘always’ treated with dignity and respect while in hospital (78% compared with an average of 86%). Patients who had a pre-existing mental health condition, that was the reason for their admission, were most likely to say they were ‘never’ treated with dignity and respect during their stay (13%)
We will publish the full results of this survey in November 2020.
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This is the 2019/20 edition of State of Care.
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Contents
Quality of care before the pandemic
- Quality overall before the pandemic
- Care that is harder to plan for was of poorer quality
- Care services needed to do more to join up
- Adult social care remained very fragile
- Some of the poorest quality services were struggling to make any improvement
- There were significant gaps in access to good quality care
- Deprivation of Liberty Safeguards
- Inequalities in care persisted
The impact of the coronavirus pandemic
- The impact on people
- The impact on health and social care staff
- Infection prevention and control
- The unequal impact of COVID-19
- The impact of COVID-19 on DoLS
- Innovation and the speed of change
Collaboration between providers
- How did care providers collaborate to keep people safe?
- System-wide governance and leadership
- Ensuring sufficient health and care skills where they were needed
- The impact of digital solutions and technology