Inequalities

Inequalities in health and care experienced by people from ethnic minority groups

Last year, we reported on how the COVID-19 pandemic had a disproportionate impact on people from some ethnic minority groups in terms of higher mortality rates. We also highlighted ongoing ethnic inequalities across a number of areas, including maternal and neonatal health care and mental health care. For example, rates of detention for people from the Black or Black British group were over 4 times those of people from the White group.

This section highlights findings from work we have carried out or commissioned to explore the experiences of people from ethnic minority groups using health and care services.

Insight of staff into the experiences of people from ethnic minority groups using maternity services

We wanted to look more closely at inequalities in maternity care for people from ethnic minority groups. To do this, in July this year we commissioned a small, bespoke piece of research interviewing midwives from ethnic minority groups about:

• their own personal experiences of working in maternity services
• their insights into the experiences of people from ethnic minority groups who were using maternity services, and related safety issues.

Our interviews with midwives from ethnic minority groups for this report gave us valuable insight on equality, diversity and inclusion in maternity services in England.

The negative experiences they told us about for those using services ranged from not having the information they need about their own or their baby’s health, disengaging from services, and physical and mental ill-health.

Language and communication

There was a strong consensus across the midwives interviewed that having poor or no English is associated with worse experiences of care. This ranged from staff ‘not bothering’ to try and communicate effectively with people who don’t speak English, to actively targeting people for worse treatment. Even where women and other people using maternity services from ethnic minority groups can speak English, midwives told us they are less likely to be listened to than people in White ethnic groups:

We are still not listening to the women who are most under-served. They are being made to feel inadequate. Especially those not speaking English – it is like, speaking English gives you status and the right to better care. Staff see [people who don’t speak English] as lowly, they dismiss them. This affects care because they are not listening...

It was felt that there was not enough importance on ensuring that people are able to understand information:

Staff need to be very mindful that you will get people nodding their head but not understanding. And instead of just choosing to accept that, staff need to make sure that they have understood.

We heard about the impact on women and other people using maternity services when they were not being enabled to understand information or communicate their feelings, needs or questions. This ranged from not having the information they need about their own or their baby’s health, to very serious physical and emotional trauma with long-lasting effects.

Midwives told us of a lack of willingness among some colleagues to use interpreting and translation services. Despite these services being generally available, they are not being used consistently, as it is seen as taking too long, or not worth bothering with – especially in less critical situations, such as a routine appointment:

We have access to the interpreters, but no-one is picking up the phone to use them. It takes longer to use the interpreter, so people are not wanting to do it.

It was noted that a standard 20-minute appointment is not long enough to allow for the extra time needed for translation, so even if an interpreter is used, a person who doesn’t speak English may still not get care of the same standard:

You try and use that 20 minutes to see a woman that doesn’t speak English – it is not enough time. We talk about individualised care, but it doesn’t feel as if you can make that happen. The result is they don’t understand their care, don’t know if they need more appointments. Midwives are rushing because they have their next appointment. Things are missed.

Stereotypes and cultural awareness

Midwives told us how care was affected by racial stereotypes and a lack of cultural awareness among staff, which led to negative experiences and potential safety issues.

One such racial stereotype of Black women as being ‘aggressive’ was seen to be directed towards women using services, as well as towards midwives themselves. The midwives interviewed said this stereotype was common and not always recognised or acknowledged as being problematic by those using it – even when challenged.

The other racially stereotyping term that came up in interviews was ‘princess’ (of Asian women). Midwives thought that colleagues viewed this as an acceptable term, rather than acknowledged as offensive. One interviewee, from an Asian background, even found herself using it of people using the service, as it was so common to hear her colleagues doing so, “You wonder, has the system turned me? To fit in, you find yourself following the culture.”

The following are some examples of stereotypes, misconceptions or lack of knowledge about physical characteristics and symptoms that affect how maternity staff address clinical scenarios for people using maternity services from ethnic minority groups.

• Misconceptions around bodies – interviewees reported hearing the following said by colleagues, including senior colleagues:
  • ‘You have an African pelvis.’
  • ‘Black women have thicker skin, so they are less likely to have a tear after delivery.’
  • ‘You are African, you are tough – you don’t need pain relief, you get on with it.’
• Lack of knowledge or interest in conditions more common to some ethnic minority groups:
  • “If I bring up fibroids or sickle cell, those are conditions that affect more ethnic minority women, and I find that [staff] don’t know as much about them – and those study days are not as well attended as the ones on conditions like diabetes and pre-eclampsia. Is that because they don’t affect white women?”
• Failure to recognise symptoms that look different on the skin of people from ethnic minority groups:
  • jaundice not being recognised because staff have been trained to recognise how it looks on white skin
  • deep vein thrombosis symptom taught as the calf going red, again only applicable to white skin
  • “The white body is the norm in the textbooks, which means diagnosis is not effective in Black women.”

Further impact of poor experiences

Interviewees highlighted that negative experiences of maternity care can lead to the risk that people disengage from services, and do not attend appointments or seek care when they need it:

Even when it is partly the workload that has contributed to their poor experience, they will see it as they got poor care because they weren’t listened to or weren’t valued. They will feel that their ethnicity meant they did not get as good care as the person next door. Some of them then tend to shy away from being in hospital – they just want to leave as soon as they have the baby.

Midwives also spoke about the cumulative psychological impact for women and other people using maternity services of feeling they have not received equitable care and respect:

All these [negative] exposures to the health service involve a negative impact – we are very much focused on physical harm, but the psychological impact of this is also a form of harm – long term, it accumulates. Being repeatedly made to feel dismissed – that has a long-term impact.

Addressing issues and what needs to be done

Some midwives saw improvements over recent years in how their trusts were addressing issues for staff and people using services from ethnic minority groups. These included:

• maternity networks to share people’s views in the running and development of services, especially when they are representative of the populations being served
• specific roles, such as cultural safety champions, as long as they are backed up with wider support and resources.

Nevertheless, there was a clear view that there is a huge amount to be done in terms of tackling inequitable care and workforce experience, and this must be based on more open acknowledgement of the root cause. One of the most common phrases used by interviewees was that issues of inequality are ‘swept under the carpet’.

Some actions were suggested to support change for people using maternity services – all requiring funding and support of leaders and managers:

• channels for staff and people using services to feel safe in reporting inequitable care, such as networks and groups, and approachable senior people with accountability
• more availability and use of translation services and interpreters to help people who do not speak English to navigate their care
• increasing the knowledge of staff about cultural practices and traditions, to address misconceptions and misunderstandings and to tackle unconscious bias
• outreach and engagement with ethnic minority communities, to better understand the needs and concerns of people using maternity services and how services can be better oriented to these.

Experiences of people from ethnic minority groups who have a long-term condition

In last year’s State of Care report, we said that there was less satisfaction among people with a long-term health condition with being able to access services when they need them and in a way that suits them. We also found links between long-term health conditions and people living in more deprived areas.

We also reported on the inequality experienced by people from ethnic minority groups, for example in terms of delays or cancellations of hospital treatment.

This year, we look at the link between these 2 groups of people, from the viewpoint of people from an ethnic minority group who have a long-term condition. This is to see how their experience of health and care differs from others in the population. To do this, we used 2 areas of work:

• We looked at patient experience surveys, where we found people with long-term conditions, particularly those with multiple long-term conditions, reported worse experiences. These experiences are influenced by a range of other factors, including age, gender and ethnicity. For this report, we focus on the interaction between long-term conditions and ethnicity.
• We commissioned qualitative research to get first-hand insights from people from ethnic minority groups who have lived experience in accessing health and social care for their long-term health condition.

Recent access to GP services

People from ethnic minority groups with a long-term condition told us that in the past 12 months, they have found it increasingly difficult to meet with their healthcare provider. For example, follow-ups are less regular than previously and there is an emphasis on them self-monitoring their condition. They have also noted a difference in how services manage appointments and reported repeated delays and cancellations, as well as miscommunication about missed appointments:

Trying to make a phone call to try and get an appointment with the doctor or the specialist, you just can't get through. So then you just give up and look for other things that are going to help me, because the process is just too long.

Interview with a Black British woman with a long-term condition

The survey of patients who have used NHS GP services was open from January to March 2023. This shows the differences between patients who have a long-term condition and those who don’t in how easy they found it to get through to someone at their GP practice on the phone. This depended on the patient’s background, with an improved experience for white patients and a worse experience for patients from ethnic minority groups. There were differences between the different ethnicities with long-term conditions, with patients from an Asian background being the most likely to report a negative experience (57%), as opposed to white patients (51%) and other ethnic minority groups (48%).

People with long-term conditions are also likely to be affected by cost of living pressures. A Prescription Charges Coalition survey of people with long-term conditions found that nearly 1 in 10 people have skipped medication in the past year due to the cost of prescriptions. Of this group, almost a third (30%) now have other physical health problems in addition to their original health condition.

People from ethnic minority groups who have a long-term condition told us they have noticed an increasing use of telehealth to provide medical care. However, many have expressed a preference for in-person appointments. They feel that care feels more human and person-centred instead of being remote and medicalised. Furthermore, some have demonstrated issues with using technology and how inequalities in access to care might be exacerbated. For example, a patient with an autoimmune condition said their doctor was unable to see a rash on their skin through the video call so put that down to their skin colour:

I had a rash on my hands and I had to take a picture of it and then send it. They kept saying ‘I can't see it, I can't see’. And I'm thinking is that because I'm Black? I don't think they made me an appointment. It wasn’t deemed as important enough because they couldn't see what I was talking about.

Interview with a Black British woman with a long-term condition

Respect and involvement

People with long-term conditions from ethnic minority groups told us they felt ‘talked down to’ about their treatment, but also that they were not being treated as individuals. Instead, they felt over-medicalised and that they had to push hard to get the medication and treatment that worked best for them.

They also said that decisions were made about their care without consulting them and that asking for things which were best for them was difficult:

That feeling of ‘I don't know what I'm talking about’. They know best. Like, they're the medical professionals. So I found that off-putting.

Interview with a Black British woman with a long-term condition

The feeling of being talked down to reflects a lack of respect also seen in our survey of patients who stayed at least one night in hospital as an inpatient during November 2022. Although the figures are low, in this survey more patients from ethnic minority groups with a long-term condition reported that they were never treated with respect and dignity while in hospital (3.4%) compared with white patients with a long-term condition (2.3%). This compares with 1.7% for white patients who did not have a long-term condition.

This lack of respect is also reflected in our survey of patients using emergency departments between 1-30 September 2022. It found that patients with a long-term condition were more likely to say staff talked about them as if they weren’t there (21%), compared with patients with no long-term condition (14%). We also saw that patients from ethnic minority groups were more likely to report the same issue (25% compared with white patients 16%). Within these groups, the biggest difference was between patients with a long-term condition from ethnic minority groups (30%) and white patients with no long-term condition (12%). This means that patients with long-term conditions from ethnic minority groups were more than 2.5 times more likely to say that emergency department staff talked about them as if they were not there, compared with white patients with no long-term condition.

Care and support

Our survey of patients using emergency departments showed that fewer patients from ethnic minority groups with a long-term condition reported that expected care and support was available when they needed it after leaving A&E (53%). This compares with patients from ethnic minority groups with no long-term condition (68%), white patients with a long-term condition (61%) and white patients with no long-term condition (72%).

The people we spoke with for this report who are from an ethnic minority group and who have a long-term condition also spoke of a lack of follow-up from their healthcare professionals. They felt that in instances of lifelong conditions, there should be greater emphasis on health care delivered in the longer term.

For example, one person noted that they were only provided with 3 sessions of physiotherapy, essential to managing their condition, but could not understand how that would be considered appropriate for a life-long condition:

The day I was discharged from the hospital, I felt that I should not just be allowed to leave like that. The following day, I took my daughter to school. And then I lost consciousness. So just imagine what if I died or something tragic just happened? So yes, I just feel that there's supposed to be a follow-up, don't just leave people. And I just felt is it because I am from a Black community. Honestly, those things just come to my mind; I just don't expect to be left alone like that.

Interview with a Black Nigerian woman with a long-term condition

Linked to this lack of follow-up, some people we spoke with said that, although they understood medical professionals had expertise, they lacked the lived experience. This meant they sometimes felt unheard, but that support groups with lived experience acted to alleviate this tension.

People felt these support groups gave them a source of empowerment, as they also offered advice when dealing with healthcare professionals and allowed them to understand what to ask for if they experienced symptoms or side effects:

I went online for a few support groups, exchanging messages with people that have the same condition. Just hearing their stories. It makes you feel more empowered. I take injections every two weeks. It is painful and scary. Even the doctors, they're great, but they don't do that on themselves. They understand the disease, but they don't go through it.

Interview with a Latin American (South American) woman with a long-term condition

Looking for other sources of support could partly be explained by the results of the survey of people who have used GP services. This shows that people with a long-term condition were more likely not to have confidence and trust in their GP practice based on their last appointment (7%) compared with those with no long-term condition (6%). We also saw that patients from an ethnic minority background were more likely to report the same issue (9% compared with 6% white patients). Within these groups, people from ethnic minority groups with long-term conditions were twice as likely to say they did not have confidence and trust in their GP practice (10%), compared with white people with no long-term condition (5%).

As well as a lack of lived experience, a lack of cultural competency was also seen as being a barrier to receiving good-quality care. A South Asian man with long-term conditions emphasised the need for better cultural awareness so that care plans are complete and appropriate: “The lack of cultural competency in service design and provision is clearly an issue. How can you prescribe a care plan for people that you don't understand”. This mirrors comments about cultural awareness expressed by midwives.

Our findings on the experiences of people with long-term conditions from ethnic minority groups are reflected in other research:

• A review carried out by the Race Equality Foundation concluded that the “intersection of disability and ethnicity results in compounded discrimination”. The review stated, “Such discrimination exacerbates inequalities in access and experiences of healthcare for people with a learning disability from ethnic minority backgrounds”. By comparing life expectancy, the review found that the average age of death for people with a learning disability who are from an ethnic minority group is 34 years – this is just over half the life expectancy of white counterparts, at 62 years of age.
• A report by the National Institute for Health and Care Research on how mental health services meet the needs of people from different ethnic groups found that mental health services often did not consider wider factors such as how racism, migration stress, and complex trauma can affect people’s mental health. People who participated in the research wanted more personalised care that was less medical. But mental health professionals said a lack of time prevented them from providing more person-centred care.

Focus on care for people with sickle cell disease

Sickle cell disease is a long-term condition. People with the disease produce unusually shaped red blood cells that can cause health problems. This includes very painful episodes known as sickle cell crises. Sickle cell disease is particularly common in people with African or Caribbean heritage, therefore any poor care in sickle cell services will have a disproportionate impact on this group.

We know that people with sickle cell disease do not always receive high-quality care. In No One’s Listening, The Sickle Cell Society reported on the findings of the All-Party Parliamentary Group inquiry into avoidable deaths and failures of care for sickle cell patients. The inquiry found:

• evidence of sub-standard care for sickle cell patients in general wards or emergency departments (A&E)
• low awareness of sickle cell among healthcare professionals
• frequent reports of negative attitudes towards sickle cell patients and a weight of the evidence suggests that such attitudes are often underpinned by racism
• concerns leading to a fear and avoidance of hospitals for many people living with sickle cell.

To focus more on this area, our Medicines Optimisation team spoke with Chief Pharmacists and their clinical colleagues at nearly all NHS trusts in England to gain a better understanding of how prepared they were to ensure that people who experience a sickle cell crisis can access timely and effective pain relief, in line with national guidance.

People experiencing a crisis are often treated in acute hospital or ambulance settings. NHS trusts told us that people sometimes choose to go to specialist trusts because they knew they would be able to access the specialist teams there. Some specialist centres recognised the need to engage better with smaller trusts to enable them to benefit from their expertise. Specialist trusts also said they couldn’t always get quick access to detailed information from secondary and primary care providers about the people they were treating.

Some community and mental health trusts viewed sickle cell treatment as the responsibility of the acute trust, so they didn’t see a need to develop their own guidelines or provide awareness training for staff. But, as people with sickle cell can be using any healthcare setting, it is crucial that providers consider how to support someone experiencing a crisis. This includes providers that care for people who are detained, such as in mental health and prison settings where access to acute services may be delayed.

We also found that:

• not all trusts had policies or procedures to support staff to offer safe and effective treatment, including the right pain relief
• some trusts had policies for either children or adults, but not both
• there was a gap in the knowledge of agency staff.

Our conversations with trusts highlighted these gaps, and prompted many to review their practice (such as policies and training). We are following up with trusts to make sure they have made improvements in these areas.

More positively, other trusts were responding to the Sickle Cell Society’s report by reviewing guidelines, carrying out audits, working through action plans and determining how to ensure people with sickle cell disease are clearly flagged on electronic health records. Specific responses to improve treatment included:

• an app developed by an ambulance trust to give clear and up-to-date clinical guidance
• an acute trust that had developed a specific route for admission for people with sickle cell disease, enabling them to avoid waits at the emergency department and be linked directly to the on-call haematology team to be treated rapidly
• a mental health trust that had proactively ensured that people with sickle cell disease were linked in with the appropriate specialist teams for regular review.

Autistic people and people with a learning disability

For too long, autistic people and people with a learning disability have faced inequalities when accessing and receiving health and social care.

Our inspections of services for these groups of people have a deeper focus on the cultures in these services. This is so we can understand people’s experiences – both positive and where they may be at risk of harm and not treated as equal citizens.

Barriers to equality

Successive reports have shown how autistic people and people with a learning disability face barriers to equality when using services that are vital for promoting their independence and quality of life.

Our progress report on ‘Out of sight – who cares?’ in March 2022 found there were still too many autistic people and people with a learning disability in hospital in mental health inpatient services. They often stay for too long, do not always experience therapeutic care, and are still subject to restrictive interventions. While people are in these limited and sometimes overly restrictive environments, they will not be able to be equal citizens and are at high risk of human rights infringements.

Our report found that challenges in the system, such as a lack of community services, prevented people from accessing early intervention and crisis support in the community, which can be particularly difficult for autistic people. They then end up in hospital as an inpatient.

The numbers of autistic people and people with a learning disability in hospitals are still high – at the end of June 2023, there were 2,035 inpatients. Over half have been there for over 2 years (1,125).

Our recent Mental Health Act Reviews also show that autistic people and people with a learning disability continue to be in hospital inappropriately when they should be receiving care in the community. Inappropriate hospital placements can cause considerable harm, especially if a person is in long-term segregation. Mainstream psychiatric inpatient care environments are usually bright and noisy and unsuitable for neurodiverse people.

In November 2022, we published ‘Who I am matters’, a report that looked at what autistic people and people with a learning disability experience when they need physical health care and treatment in hospital. We looked at a range of treatment and support, from minor injuries in emergency departments to surgery – all of which can cause anxiety for anyone. The report found not only issues around critical patient safety, but also key equality issues.

Needs arising from other protected equality characteristics, such as age, race and sexual orientation, risked being overshadowed by a person’s learning disability or autism because staff lacked knowledge and understanding about inequalities. All too often, good care came from specialist staff or individual members of staff going the extra mile for people they were caring for.

People also told us they found it difficult to access care as reasonable adjustments, such as communication aids or sensory tools, weren't always used.

In line with our strategic ambition to tackle inequalities in care, we presented some perspectives from autistic people on challenges they experienced when using primary care services. How you see me matters included aspects like the importance of consistency and seeing the same healthcare professional to reduce anxiety. Using these personal experiences will help to improve how we assess healthcare providers that deliver care for autistic people. They also highlighted areas where providers and systems can improve experiences for autistic people by:

• providing training for staff to meet regulatory requirements, noting the Oliver McGowan draft code of practice on statutory learning disability and autism training that was out for consultation until autumn 2023
• making reasonable adjustments to premises, processes, and communication
• ensuring timely access to diagnostic assessments for autism and support after diagnosis – autism may present differently in different age groups, genders and ethnicities
• working together with other services to co-ordinate people’s care.

In ‘How you see me matters’, people also described how short appointments with a GP or dentist make it difficult for them to fully discuss all the concerns that led to the appointment, and to make shared decisions about their ongoing care and treatment.

This is supported by a recent NHS Race and Health Observatory report on access to healthcare services for people from ethnic minority groups who have a learning disability. This found that inadequate reasonable adjustments, including unsuitable methods of communication and inflexibility with appointment times, inadvertently resulted in sub-standard care and treatment. For example, one carer described a lack of easy-to-read information about the health check, no flexibility around appointment times, and not enough time for the GP appointment itself:

There’s supposed to be adjustments and the guidelines suggest that GPs should have extra time for all of these appointments as well. There was absolutely none of this and it took literally 10 minutes to do his blood pressure, height, weight, and the general nodding of heads saying ‘consultants are dealing with this so we don’t need to talk about it’

As part of our ongoing activity in this area, we’re working to identify what CQC can do that will have the most impact on the health of autistic people and people with a learning disability. A key area of work will be around identifying the barriers and issues for these groups of people in being able to see their GP. For example, we want to focus on the quality of annual health checks and action plans to ensure referrals and onward assessment, diagnosis and treatment are made at the right time to reduce mortality.

Findings from our inspections

To help respond to the issues described above, we are continuing to develop our approach to inspections and assessments of services for autistic people and people with a learning disability. We are doing this to really understand people’s actual experiences – ‘What is it really like to live in or use this service?’. We will also support providers to do the same.

To help us identify closed cultures in services, we focus on listening and observations as well as using Experts by Experience with recent personal experience of health and care. We will continue to strengthen and embed this approach, through our new assessment framework and out-of-hours visits, to listen to and spend time with people. We will continue to look at how we can spot signs of a closed culture early.

One finding from our recent inspections of services for autistic people and people with a learning disability is a lowering of expectations – that less than good care is good enough, because we are still recovering from the pandemic.

In one care home, people with a learning disability were not supported to go out and participate in activities that were meaningful to them. We reviewed records for 3 people and found limited evidence that they were able to pursue their individual hobbies and interests – both within the home and in their local community. For example, one person enjoyed swimming and their care plan stated they should be supported to go swimming once a week. However, there were no records to show evidence that this person had been swimming since before the COVID-19 pandemic and staff confirmed this.

When we discussed the shortfalls identified during our inspection, the registered manager told us they were disappointed and explained the impact of the pandemic on the service. However, they recognised it was now time to improve.

Supported living

To understand why autistic people and people with a learning disability experience inequality, we’re listening to experiences and working with other partners to improve care and how services are regulated.

In last year’s State of Care, we reported how we had set up the Supported Living Improvement Coalition as part of improving our regulation and achieving equality for autistic people and people with a learning disability. The Coalition’s aim is to drive the improvements needed to change outcomes for people who access supported living, which can enable adults to live in their own home with the help they need to be independent. Partners in the Coalition include people who use supported living services, advocacy groups, care providers, local authorities and housing association representatives.

The discussions and issues raised so far in the Coalition have provided much learning, with some main concerns:

• there are failures in the system in which supported living services are operating, which hampers their ability to respond when people need support
• there are inconsistent outcomes for people using supported living services, as not everybody receives the same level of personalised care; for example, relationships between people and staff could range from being like a “friendship to a hotel staff worker”
• a lack of funding can mean that budgets are prioritised above truly person-centred approaches to supporting people.

Concerns around funding for supported living services are supported by our Market Oversight financial data. This shows a large fall in profitability in ‘specialist services’, which include supported living services and other residential and homecare services for autistic people and people with a learning disability.

Profitability is calculated using ‘EBITDARM’, which is a high-level measure of profit that excludes key expenses such as rent, depreciation and interest charges. It shows that profitability in these specialist services has declined consistently between September 2021 and March 2023 (by 5.1 percentage points to a profit margin of 14.6%).

Higher staff costs have been the key factor in this profit reduction for specialist services (increasing by 3.4 percentage points). This is further exacerbated in residential settings, which have a higher use of agency staff and are more affected by recent inflationary increases in non-staff costs, such as heating and food.

Some providers have told us they may have to hand back unsustainable packages of care:

One of the issues we’ve had over the last 12 months is having to use agency and that has absolutely [scuppered] us in terms of any surplus we might have had.

Quote from a provider during research interviews with Supported Living Improvement Coalition partners

We are concerned that, although specialist providers such as supported living services tell us they have achieved some efficiencies using rostering systems and overtime, these efficiencies alone are not enough to guarantee financial sustainability in the long term. Services such as these are more likely to be funded by local authorities, so they are less likely to be able to subsidise packages of care by increasing private fees (compared with care homes for older people, for example). Increased funding for these specialist types of service is vital to be able to support autistic people and people with a learning disability in the future.

Alongside funding, Coalition partners said that the broader economic context was having a significant impact on the lives of people in supported living, with people being at particular risk of not being able to fund their own care.

The attitude of staff was discussed as a barrier to good supported living. Although some Coalition partners talked about support staff being “really good, caring people”, others talked about the impact of negative attitudes shown by staff. One person with lived experience talked about feeling discriminated against by support staff.

Restrictive practice

We are able to hear the views of people with lived experience, their family members and partners in the wider system through our Expert Advisory Group. The group helps us to set the direction and focus of our activity in driving improvements in care for autistic people and people with a learning disability. Members told us that the use of restrictive practice can cause trauma and harm to those experiencing it, and fed back to us that:

• Autistic people and people with a learning disability need more support to communicate their needs and be listened to, and have those needs acted on. Blanket policies and a lack of person-centred care and care planning cause issues and frustration.
• Staff need to get to know the people they support. Too often, they use the threat of restraint to respond when they find it difficult to interpret or manage the way a person is communicating. This is often due to a lack of training, a poor relationship between staff and people, or just not having enough time.
• There is insufficient funding for research into alternatives to restrictive practice, and not enough independent advocates.

The Expert Advisory Group asked us to act to help reduce the use of restrictive practice, and we have made it one of our priority areas. We have now shared our policy position on restrictive practice, which clarifies that we expect leaders of services, systems, and all those working in health and social care to take immediate steps to identify and reduce restrictive practices in their services, where possible.

It is not acceptable that there is still a big inconsistency in outcomes for autistic people and people with a learning disability.

As well as reducing the use of restrictive practices, strong leadership is critical in bringing together people, those speaking up on their behalf, staff, providers, and system partners, to:

• ensure better availability of community-based options to reduce hospital admissions and provide actual choice for people to receive safe, preventative and high-quality care where they live
• improve the equality of access to health services, including reasonable adjustments, to keep people well, reduce health crises and prevent early mortality.

Children and young people

Last year, we highlighted how services, especially for mental health, were struggling to meet the needs of children. We have engaged closely with children and young people to hear first-hand about their health and wellbeing, as well as their experiences of services.

Mental health

Through our inspection and monitoring activity over the last year, we can see the continuing impact of the pandemic on the mental health of children. Too many children have long waits for mental health support, fuelled by increasing demand and staff shortages. The mental health charity, YoungMinds, recently reported that the number of urgent referrals of children to crisis teams has reached a record high. The data also found that the number of children and young people undergoing treatment or waiting to start care using children and young people’s mental health services reached 466,250 referrals in May 2023, the highest number on record.

Providers tell us that children typically present with worse mental health issues than before the pandemic.

Research by the NHS Confederation also supports these findings. This estimates that in the next 3 to 5 years, 1.5 million children and young people will need new or additional support for their mental health, including seeking treatment for eating disorders. In the last 2 years, the number of children and young people being referred for urgent support for eating disorders has increased by nearly three-quarters – at a time when mental health services have seen increased demand and waiting times.

Young Champions group

Towards the end of 2022, we recruited a group of young people aged between 13 and 25 from across England as ‘Young Champions’. The group’s purpose is to:

• steer and challenge CQC on how we engage with and listen to young people and embed their voice and views across our work
• support our colleagues to speak to young people about their care
• encourage other young people to give feedback to CQC
• support young people to develop their skills and confidence.

Issues such as mental health were central to the Young Champions’ life experiences, and the reason why they joined. One applicant said, “I believe that the voices of young people needed to be heard about mental health.”

We invited the Young Champions to help us inform this year’s State of Care by co-designing and testing a survey about their experiences of health and care services and circulating it within their networks. We received feedback and experiences from 159 young people. The following results reflect the experiences of this group of young people rather than necessarily representing the experiences of all 13 to 25-year-olds.

Nearly 2 in 5 young people (38%) reported having a problem with their mental health (diagnosed or undiagnosed) in the last 18 months. When asked to describe these problems, many referred to anxiety or depression, with a small number saying they had attempted suicide or thought about it:

I have seen child and adolescent mental health services face-to-face twice – once in October last year for an initial appointment and once a few weeks ago. I begged to see the crisis team in person because I was very suicidal. This is after a 2-year wait and being in the most urgent category since February. I have felt like this before and it has been very dangerous not getting the support I need. I feel failed.

(Respondent to young people’s survey of health and care)

When asked about the factors they believed contributed to young people’s mental health problems over the past 18 months:

• three-quarters (76%) of young people thought social media had contributed
• 7 in 10 (71%) thought academic pressure had played a role
• 7 in 10 (70%) thought the pandemic had affected young people’s mental health.

Asked about the other effects of their poor mental health:

• 68% said their diet and physical health had deteriorated
• 57% had decreased academic performance
• 53% had strained relationships.

Of those who responded, 7 in 10 felt that the services they accessed, such as counselling or crisis helplines, did not help them or they were unsure if they had helped (35% felt that the services they accessed didn’t help them, 35% felt unsure):

I am a young [late teenage] female. I have struggled with my mental health for years and only last October one person mentioned to me at a CAMHS initial appointment that I might be autistic. I have been dismissed and not listened to for years, despite displaying clearly autistic traits, but I believe because I am a young female it has been missed and I now suffer with anxiety and depression from not getting the support. I also live in a rural area and there is a definite lack of mental health services and funding.”

(Respondent to young people’s survey of health and care)

When asked about general health and care services, only around 3 in 10 respondents were able to access all the services they needed in the last 18 months. The most reported barrier to access was waiting times for appointments or diagnoses. For example, one person complained of an “Extremely long waiting list and not enough long-term help”; another said, “Bad experience with dentists – no NHS options in the area, so issue has gotten worse”. Availability of face-to-face appointments was also a concern.

These findings reflect what we are seeing through our inspections and monitoring – for example, a significant increase in waiting times for community children’s services, such as speech and language therapists. A recent report by NHS Providers and NHS Confederation warns that long waits can often affect outcomes for children more severely than adults because delays in assessment and treatment have a knock-on effect on communication skills, social development and educational outcomes as well as their mental wellbeing.

The British Dental Association (BDA) has warned that inequality in oral health care among young people is set to widen, as research published in May 2023 estimates that over 15 million appointments for children have been lost since the pandemic lockdown. NHS England data up to the end of June 2023 shows that 5 million children have not been seen by an NHS dentist for at least a year.

The BDA warns the lack of access will disproportionately affect lower income, higher needs families – widening the UK’s oral health gap.

Government data also shows that the tooth extraction rate in NHS hospitals (which indicates a lack of primary care dentistry) for children and young people living in the most deprived communities was nearly 3 and a half times that of those living in the most affluent communities. Also, tooth decay was the most common reason for hospital admission in children aged between 6 and 10 years.

Our survey of young people found that around 3 in 10 (29%) had a very positive or positive experience when trying to access the health and care services they needed, but 13% had a negative or very negative experience (31% did not respond to this question).

When asked if young people felt like they had been treated fairly when using health or care services, only just over half of respondents (55%) felt they had. Some young people (18%) felt unsure if they had been treated fairly and 13% reported that they didn’t feel like they had.

Of those who were unsure or felt they hadn’t been treated fairly, the most common reason was because of their age. Some other young people felt like they weren’t treated fairly because of where they live (16%), their disability (14%) or their gender (12%). A few young people said they thought they were treated unfairly because of their ethnicity, with one saying, “The way I'm viewed and listened to is often different because of misconceptions and it makes opening up hard”.

Equality for the health and social care workforce

In this section, we look at the inequalities experienced by staff working in health and social care services.

Equality for disabled staff

The Workforce Disability Equality Standard (WDES) is a set of 10 specific measures for NHS organisations to compare the workplace and career experiences of disabled and non-disabled staff.

Overall, results indicate poorer experiences for staff with a disability. For example:

• the proportion of staff with a disability who experienced harassment, bullying or abuse at work from managers (16%) was higher than staff who did not have a disability (9%)
• a higher proportion of staff with a disability (28%) felt pressured to work when feeling unwell compared with staff who did not have a disability (20%).

Workforce equality for ethnic minority staff in the NHS

Data on the NHS Workforce Race Equality Standard shows the vital contribution to the NHS made by staff from ethnic minority groups.

Since 2018, the number of staff from an ethnic minority group has increased by over 100,000 (with representation of the total workforce increasing from 19% to 24%). An increase in internationally educated nurses and international medical graduates is likely to be a significant contributor to this.

A large increase in 2021/22 saw the number of staff from ethnic minority groups increase by over 27,500.

London had the highest proportion of staff from ethnic minority groups at 50%, while the South West had the lowest proportion at 13%.

Staff from ethnic minority groups are still under-represented at the top of the NHS. Although they represent nearly a quarter of the workforce, they make up just 1 in 10 of very senior positions.

There are some signs that staff from ethnic minority groups are beginning to be represented more in NHS leadership positions. The total number of staff from ethnic minority groups at very senior manager level has increased by 70% from 201 in 2018 to 341 in 2022. However, these numbers are relatively small: in comparison, there were 2,754 staff in very senior manager levels in White ethnic groups.

Although the NHS is working to improve the inclusivity of recruitment and promotion, in 2022, White applicants were 54% more likely to be appointed from shortlisting compared with applicants from an ethnic minority group. This is lower than 2021 (61%), but higher than in 2018 (45%).

Experiences of staff from ethnic minority groups

Staff from ethnic minority groups also continue to have poorer experiences compared with staff in White ethnic groups.

The NHS Staff Survey National results briefing 2022 describes how staff from ethnic minority groups were 4 times more likely to experience discrimination from patients, people using services, their relatives or other members of the public in the past 12 months than staff in White groups (20% compared with 5%).

And in 2022, a higher percentage of staff from ethnic minority groups (29%) than White groups (27%) were harassed, bullied, or abused by patients, family, or the public. This figure is particularly high for female staff from a White Gypsy or Irish Traveller background (43%).

We look in more detail in the section on workforce about increases in international recruitment, as well as concerns about modern slavery and human trafficking.

Through our inspections and Give feedback on care service, we hear how staff working in hospitals, care homes and in other health and social care services are subject to racism. We have published a Statement on tackling racism within health and social care alongside an open statement to healthcare providers signed with the NHS Race and Health Observatory, Nursing and Midwifery Council, and the General Medical Council. This makes clear that leaders should ensure that health and care staff across the country are protected from racism, or any other form of discrimination, as they go about their vital work.

Experiences of midwives from ethnic minority groups

Our interviews for this report with midwives from ethnic minority groups gave us valuable insight on equality, diversity and inclusion in maternity services in England.

Career progression

We identified that career progression was one of the key challenges affecting midwives from ethnic minority groups. They reported a range of issues in this area, all broadly feeding into reduced opportunity to develop and progress, compared with counterparts from White groups.

Midwives said they were less likely to be represented in leadership and managerial roles, and noted a pattern of White colleagues being better prepared for, and more likely to secure, promotion.

There was a view that promotion was based on ‘who you know’, rather than who would be good for the job:

The talk on the shop floor is ‘so and so will get the job because they are very pally with so and so on the panel’. Who goes out with who for drinks, who is in the same circle. Not about merit and considering who would be good for the job. It’s based on people having the same cultural background.

Midwives from ethnic minority groups may also be disadvantaged in the job interview process. People on panels may not include those from ethnic minority groups, which does not set an encouraging and supportive tone. Even when it does happen, a midwife from an ethnic minority group told us she did not feel she had an equal voice to white people on panels.

Cultural norms may also affect interview performance. For example, cultural perceptions around eye contact affected one midwife during an interview, where her lack of eye contact was construed as a sign of poor communication or even rudeness: “Getting this feedback throws me, because culturally where I come from, making eye contact would be very disrespectful. I was disadvantaged by their lack of understanding of that.”

Culture

In our 2021 report, Safety, equity and engagement in maternity services, we highlighted the importance of open and inclusive cultures. We described how this was not only necessary for good clinical care, but that it also helps to drive a culture of safety and improvement.

However, in our interviews, midwives described a culture in which it is normalised for people from ethnic minority groups to tolerate discrimination from colleagues, and work harder to progress than their white counterparts.

They experienced and witnessed colleagues’ language and behaviours that reflect racial stereotypes and a lack of cultural awareness.

Midwives found themselves having to act as educators about race, explaining aspects of culture or religious practices, such as wearing the hijab. Or explaining why certain words constitute a microaggression and are therefore not acceptable to use:

They will say about a [White] staff member, ‘that person is so passionate’, and when it’s a Black person, it is called ‘aggressive’. Even though those two people are saying the same thing.

Some midwives told us they were frustrated by being expected to act as interpreters for people using maternity services. While they want to help, this is not part of their job, and made them feel ‘used’ by colleagues:

You feel used for translation. I would be pulled here, there and everywhere to translate, and it is not part of my job. But I am doing it because that is the worst thing for someone – to be in an emergency situation and not know what staff are telling you.

As well as colleagues explicitly drawing attention to their difference, midwives talked about more subtle behaviours that contributed to them feeling a sense of exclusion, a lack of belonging and not feeling part of the team:

I feel like I can’t be my true self in work. I might be somewhere and there are 2 midwives talking and the conversation stops when I come in. You want to reflect and offload with other midwives about patient care. So it’s very hard when you don’t feel you have anyone you can do that with.

A very common theme in the interviews was around speaking up about concerns – whether about patient care, or about mistreatment of midwives themselves. There was a clear view that speaking up was likely to be a negative experience, and that the risks and consequences of doing so had to be weighed up – ‘how will this affect how I am treated against my desire to call out unfair treatment’.

Participants overwhelmingly felt that issues were ‘swept under the carpet’, or addressed only superficially, showing a lack of genuine accountability either by individuals or the organisation.

Interviewees also highlighted that historical and cultural factors play a role:

It goes back to culture and growing up – our parents and grandparents came here and worked and they struggled and there is this narrative of being grateful – you don’t say anything, racism is normal, you stay quiet and move on – that has been so ingrained in you.

The impact of the challenges and issues experienced by midwives from ethnic minority groups were felt in terms of reduced wellbeing, mental health, confidence, motivation and career options.

Addressing issues and what needs to be done

There was variation in the extent to which the midwives interviewed were aware of any work underway in their trusts to address challenges and issues for staff from ethnic minority groups, and the extent to which they thought this work was making a positive difference. Interviewees who were more aware were those in roles with a specific remit around equalities, and they, along with the other interviewees, generally agreed that awareness of any improvement work or initiatives ‘on the shop floor’ was low.

All interviewees agreed that it is hugely important to staff and people using maternity services to have ethnic diversity within the workforce that reflects the population it serves – particularly at senior level. This is because it helps to ensure there is awareness of the reality of racism and discrimination, as well as helping staff to:

• feel equal and represented
• have role models and advocates for progression
• feel able to speak up and raise concerns.

Why is it that in the hospital we don’t have staff that look like the women who are using maternity services? Women want that – they tell me, ‘I feel I will be more open and therefore get better care’.

The midwives interviewed felt there was a need for more education and mandatory training about race and culture, and more opportunities for staff to talk about race in informal ways, such as:

• events celebrating colleagues from the Windrush generation
• more support and encouragement at senior level for grassroots action
• building trust by acknowledging and addressing issues.

Tackling inequalities in health and care

It is clear that the pandemic and the cost of living crisis have widened and exacerbated inequalities – both for people using health and social care services and those who work in these services.

The 2023 Edelman Trust Barometer Special Report on Trust and Health found that the cost of living crisis is regarded as the number one societal factor worsening health. Seventy-one per cent of respondents to the survey in the UK said that inflation is negatively affecting their health. The report also highlighted that the cost of living crisis risks making socio-economic health inequalities worse. Over half (58%) of respondents on lower incomes said there is a gap between how well they’re taking care of their health and how well they should be, compared with 39% of high income earners.

Data from the Office for National Statistics shows that in 2018 to 2020, female healthy life expectancy at birth in the most deprived areas was 19.3 years fewer than in the least deprived areas; for males it was 18.6 years fewer.

In this report, we have highlighted people who are more likely to face inequalities in access and experience when using health and care services, including:

• people from an ethnic minority group
• people who have a long-term condition
• autistic people or people who have a learning disability
• children and young people.

There are still some basics that health and care providers need to improve, such as:

• more consistent compliance with the Accessible Information Standard to help fulfil their legal responsibilities under the Equality Act 2010
• providing more consistent access to interpreters
• having a better understanding of how structural racism can disadvantage people.

While there is still room for improvement once people step through the door of health and social care services, even bigger gains will be made through addressing equity in access to services and tackling some of the underlying causes of health inequalities. Because inequalities vary by area, each area must have its own tailored response to meet the needs of its local population.

Reducing health inequalities is the most effective way to improve both the health of people in England and to invest in people’s futures. Health spending should be seen as an investment, rather than a burden. And systems need to see reducing health inequalities as their core purpose.

Working to reduce health inequalities

As part of our work funded by the Regulators’ Pioneer Fund, we published some guidance in March 2023, which explains what innovation is, along with examples of innovative practice in NHS GP providers that aim to reduce health inequalities. This followed work, which we are continuing, around fairer regulation for GP providers, led by doctors from ethnic minority groups.

The guidance shows that innovative practice to address health inequalities:

• needs to be tailored to an individual GP practice and the needs of its population
• doesn’t have to be about treating disease or illness – it may focus on improving life chances and the overall physical, mental and social wellbeing of patients
• isn’t just about developments in technology – indeed, sometimes these advances may exclude certain groups, such as people with particular disabilities and people facing poverty
• is often more successful when delivered collaboratively across a system.

Examples of innovative practice included a GP practice that secured funding through its primary care network to carry out staff training and get involved in the Pride in Practice programme to support the LGBT+ community to have better access to GP services. The practice revised its policies and language to be more inclusive of LGBT+ people and supported staff to challenge any homophobic or transphobic language or actions.

Another GP practice supported a community centre to set up a ‘health befriender scheme’ for asylum seekers and refugees. This helped these patients navigate the NHS and access help and support for their health needs by matching up new arrivals with asylum seekers and refugees who had settled in the local community to support them with booking appointments and getting to consultations.

Systems and inequalities

One of our core strategic ambitions is tackling inequalities in people’s access, experiences and outcomes when using health and social care services. To help fulfil this ambition, we are starting to look more at the different factors that affect health and care in our new assessments of providers and local systems. We need to be able to feed this back to integrated care systems to help reduce health inequalities and improve quality of care.

Local authorities and integrated care systems have a responsibility to ensure they apply effective approaches to reduce health inequalities between geographic areas. This could be through:

• funding the expansion of an effective model across the system
• convening services in an area to share best practice
• providing peer support services to share learning among services.

Effective areas seem to have a clear health inequality reduction strategy, strong delivery structures and clearly defined, multiple levels of local autonomy to reduce health inequalities.

Engagement with communities is vital in defining strategic local-level and neighbourhood priorities for tackling health inequalities and in delivering trusted interventions at local level. We discuss more information about how local systems are responding to the challenge of inequalities and how we are assessing them in the section of this report on Systems.

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