The state of health care and adult social care in England 2024/25

Barriers and inequalities when accessing and using GP services

In last year’s State of Care report, following compelling feedback from our expert advisory group, we introduced our priority area of exploring the challenges and barriers that autistic people and people with a learning disability experience when accessing their GP practice.

The following is a summary of our findings from this project, which informs our work to tackle inequalities in health – a key factor in helping to reduce early mortality for autistic people and people with a learning disability.

Accessing GP services

Our analysis found evidence that autistic people and people with a learning disability can find it challenging when trying to access an appointment with their GP. Sometimes they face difficulties with using the technology to book appointments, such as eConsult or the NHS App.

In our focus groups, our Experts by Experience who have lived experience of a learning disability or autism told us that they would like their GP practices to offer more choice and flexibility when booking an appointment. These difficulties in accessing primary care services are not merely inconvenient but can serve as a significant barrier to receiving care.

One person who has a learning disability and is also autistic expressed difficulties using the booking app:

The NHS app is very confusing. My mum has to help me with that. In my opinion it's very hard, it's very fiddly. I don't think it's made adjustments for people who are autistic, dyslexic, have dyscalculia or people who are blind.

Difficulties accessing GP services can have a detrimental effect on people. One autistic person reported that a GP practice failed to explain the process for ordering repeat prescriptions, which meant they ran out of the medicines they were taking for their mental health needs. They described how they had to reach a crisis point in order to get the primary care that they needed:

I've usually found that by the time I get got to the point where I'm crying on the phone, they'll actually help. I did get [the medicines] in time, but it usually does end up getting to the point where I have to have quite a big reaction for them to take me seriously.

Information from adult social care providers submitted through the provider information return also shows the challenges they experience when working with primary care services. Although unprompted, providers told us about difficulties when supporting autistic people and people with a learning disability to book a GP appointment.

However, some comments described primary care providers as being more flexible around appointments, including making home visits:

Adaptations are incorporated into the appointments for individuals who prefer morning or afternoon visits or a quieter timeframe.

The GP, dentist, ophthalmologists and podiatrist will visit the service rather than have the supported people having to wait for long periods in waiting rooms, which they would not tolerate.

Using GP services

Poor communication from providers can be detrimental to people’s experiences of primary care and may leave them confused or uncertain about the next steps in their care.

Autistic people and people with a learning disability used our focus groups to express a wish for their needs to be taken seriously. Participants also shared examples of good communication from their GP practice and the positive difference this makes to their experience of care. For example, people praised staff who were reassuring and who took the time to acknowledge their needs, such as explaining things in a different way to make sure it was understood.

Comments from adult social care providers in their information return often described how good communication and information from GP practices helped them to offer appropriate care and support to people, and therefore improve their experiences.

For example, some said they had regular, scheduled meetings with their local GP practice to discuss the people who use their services. Others emphasised the importance of having a sense of familiarity between GPs and the people who use services, as it enables continuity of care and understanding of the needs of autistic people and people with a learning disability. One care home said it had worked with its GP practice for “a very long time and those we support are familiar with their long-standing Drs and staff members, including the learning disability nurse”. Another service said:

The GP, many surgery staff and the learning disability nurse are known to the people we support enabling continuity of care and understanding of their complex needs.

During focus group sessions, our Experts by Experience also mentioned the importance of having a named GP. Some participants described feeling distressed when their routine was disrupted or when having to deal with change, for example, seeing a different GP. One person spoke positively about their GP, including how the care they received was strengthened by the GP’s consistency:

I love going to the GP because I get the same routine. If there's change, it can really upset me. I like consistency. And some people don't get that.

Despite the benefits of having the same GP, the 2025 GP Patient Survey found that only 40% of people with a learning disability and 42% of autistic people who have a preferred healthcare professional said they were able to see or speak to them when they asked to ‘always or almost always/a lot of the time’.

We welcome the Code of Practice on statutory learning disability and autism training, which aims to ensure that staff have the right skills to provide care, and to boost their understanding of people’s needs. The Code will further support us to inspect health and social care providers and assess whether they are training their staff to support autistic people and people with a learning disability appropriately. It will also support us to hold them to account to ensure that they are delivering good, informed, and safe care.

Annual health checks

GPs maintain a register to identify people aged 14 and over with a learning disability who need additional support. Being on this register enables patients to receive reasonable adjustments, in addition to an annual health check.

As at March 2024, there were around 1.3 million people with a learning disability in England, yet only 347,840 (about 25%) were recorded on their GP’s learning disability register. This low registration rate means that many people with a learning disability are unable to access an annual health check and receive the reasonable adjustments they are entitled to. Additionally, about 12% of eligible people with a learning disability are registered with GP practices that do not provide annual health checks.

A few adult social care providers noted in their information returns that even if people were listed on the register, staff shortages at GP services meant that people did not receive their annual health checks:

The people we support have not received their annual health review in the past 12 months as the GP has no resources to complete them.

More positively, other providers talked about the importance of effective joint working with GP services who deliver annual health checks as part of their support plan. For example, one service described their work with the local GP service to facilitate an “Annual GP health check with 6-monthly review of their medication [as part of] a collaborative approach to meeting the needs of the people using [their] service, which starts with their person-centred support plan.”

Reasonable adjustments

Through our focus groups, autistic people and people with a learning disability told us that they are not consistently offered reasonable adjustments as their needs were not recorded in their records. This put the onus on them to ask for reasonable adjustments or to arrange adjustments for themselves, and they sometimes lacked the confidence to do that:

With reasonable adjustments, I can't go up to them and ask, I'm just not confident enough. So if they've got on my notes that I'm autistic, it would help if they actually ask what would help, rather than expecting me to say.

People in our focus groups described how they found waiting for appointments difficult or anxiety-inducing, or that the noises and lights in waiting areas were distressing:

Waiting in the waiting room just doesn't work at all for me.

We shouldn’t have to wait that long, because we all get anxiety when we have to wait a long time.

People also spoke about the importance of having clear and accessible information. One person mentioned that, even though their practice had easy-read versions of leaflets, they were not on display and patients had to ask for them at reception. They said:

If you want something in easy-read, they've got to actually find it. Why can't they have a leaflet there like all the other leaflets? Why is it hidden away?

Our analysis of comments in adult social care provider information returns also found that the right reasonable adjustments were not always in place to make primary care a positive experience:

There is lack of understanding of the need for reasonable adjustments for people with learning disabilities and autism among most healthcare professionals, and that often leads to delayed treatment. Health inequalities still exist.

However, comments also described GP services that made reasonable adjustments in accordance with people’s individual preferences when running annual health checks – this indicated a person-centred approach to the provision of care:

The GP's learning disability nurse will visit the service for any medication reviews or health reviews and vaccinations. They will visit our care home so the experience for the residents is more person-centred. This will also ease their anxieties.

Essential visits, such as learning disability annual reviews, are maintained in the GP practice or at the service due to people’s preferences and requirements.

Independent Care (Education) and Treatment Reviews

In 2019, we published our interim report ahead of our Out of sight report, which focused on restraint, prolonged seclusion, and segregation for autistic people and people with a learning disability. In response, in November 2019, the then Secretary of State announced that all autistic people and people with a learning disability in long-term segregation would have their care independently reviewed, which led to the introduction of Independent Care (Education) and Treatment Reviews (IC(E)TRs).

IC(E)TRs are in-depth reviews of a person’s care and treatment. They investigate whether:

• the person’s rights are being upheld
• the Mental Health Act Code of Practice is being followed
• restrictions are being kept to a minimum.

They also aim to move people out of long-term segregation, as autistic people and people with a learning disability should not have to endure prolonged segregation.

In November 2023, the final report by Baroness Hollins recommended that the Department of Health and Social Care, NHS England and CQC should commit to funding and delivering interventions to reduce the use of solitary confinement and move people to the least restrictive setting and out of hospital as soon as possible. The previous government asked us to take the lead on IC(E)TRs for 2 years, with reviews starting in May 2024. The following section describes our early findings of ongoing work and analysis based on 16 early IC(E)TR reports and a focus group with IC(E)TR panel chairs. In this analysis, we found that many reports noted changes which had not happened for people, often where recommendations from previous reviews had not been completed. However, we are already seeing the impact of our IC(E)TR programme to support people to leave long-term segregation.

Our analysis focuses on how people are supported to leave long-term segregation while highlighting factors that prevent this from happening soon enough. We also analyse the care and support people receive while in long-term segregation. The scope of IC(E)TRs means we cannot give a detailed understanding of preventing long-term segregation. To help address this, we are working with our external oversight panel to identify practices that help to prevent long-term segregation. We expect providers to have a culture that respects the rights of autistic people and people with a learning disability, provides skilled, trauma-informed therapy, follows the principle of least restriction, and promotes recovery.

Discharge planning

Discharge planning was viewed as an important aspect of supporting people to leave long-term segregation. Some review reports noted that there was no discharge plan in place and recommended that providers start to create a pathway for people to leave long-term segregation by working with other stakeholders, such as commissioners and local authorities. Reviews often recommended that these plans were developed in collaboration with the person and those who represent their best interests.

We also found that providers had not held discussions about discharge or leaving long-term segregation with some people:

In half of the places that I've been recently, they weren't really having those discharge conversations. In two cases they were having lots of really positive conversations. They were recording what the person's views were, what they wanted when they moved out, what sort of place they wanted to live, where they wanted to live. They were in regular communication with that person's family.

[IC(E)TR Panel Chair]

IC(E)TR panel chairs told us about instances where providers did not have discharge plans for people, citing the 2 main contributing factors as:

• a lack of knowledge
• a lack of leadership and drive.

For example, some clinical teams lacked the knowledge and the expertise to work with autistic people and people with a learning disability, which could be a barrier to people moving out of long-term segregation. This included knowing how to support people’s communication requirements and supporting them in ways that reduced anxiety around change.

A lack of leadership and drive could lead to a culture of ‘stuckness’ where, although staff might want to support someone to leave, a team might become collectively uncertain about how to do this.

By contrast, panel chairs said they had seen some effective interventions when stakeholders from external initiatives came into services to work with people and staff to reduce people’s time in long-term segregation. These independent stakeholders provided the leadership and direction that was sometimes lacking internally. They often implemented a human rights-based approach and focused on staff building a good relationship with people in long-term segregation to better understand their wants and needs.

Providing joined-up care from services and professionals

Enabling people to leave long-term segregation cannot happen through the inpatient team alone. It requires joined-up care delivered between services and professionals, including:

• active involvement from the most appropriate specialist community teams in supporting a person’s transition
• active involvement from the relevant integrated care boards and local authority
• commissioners working to remove barriers
• sharing skills and knowledge to support the person during the transition to life outside of long-term segregation.

Panel chairs told us about the key role of commissioners in progressing people out of long-term segregation, with some having seen “commissioners who are passionate about getting the person out”. Where this was working well, commissioners knew the person, they were in contact with their family or supporters, and attended meetings. One example was of a commissioner who was quite firm and challenging with the provider, and really clear about what they wanted from the provider and the direction of travel. This showed that leadership from outside of the clinical team facilitated people’s progression out of long-term segregation.

Another potential barrier noted to leaving long-term segregation was the complicated commissioning landscape. If someone's inpatient care is funded by the integrated care board, the commissioner is responsible for both the inpatient and community care along with the local authority. However, if the person is in secure care or mental health services for children and young people, then the provider collaborative is responsible for commissioning the inpatient stay.

The provider collaborative is not responsible for community provision, but needs to work closely with the integrated care board and local authority to effect discharge. This means that there are often difficulties in understanding who is best placed to discuss discharge planning with the person. This is because the professional who has the relationship with them often does not have enough information to discuss what is possible. This includes understanding the person's wishes for their future.

We were told that this difficulty in understanding was further hindered by an inability or failure of some commissioners to actively engage with other stakeholders in people's discharge planning while they were an inpatient. A chair told us this was sometimes made apparent during IC(E)TRs by a lack of engagement from integrated care board commissioners in the review process: "the integrated care board just refused to come to the IC(E)TR" citing reasons such as "we haven't got enough time to come to the IC(E)TR" or saying they "don't come to IC(E)TR on a matter of policy because the provider collaborative is involved". The chair argued that this "is about the integrated care boards who are responsible for the discharge planning, being at the table", which in their experience appeared to vary from review to review.

The level of involvement from community teams varied in preparing people to leave long-term segregation. One chair said they had not seen any occasions where the team in the community were already in place, and another noted times when there were challenges involving the social care team. They believed a lack of connection between services caused by moving people ‘out of area’ was a potential barrier here.

On the other hand, panel chairs also spoke about community teams going into hospitals to build up the knowledge, skills, and relationships to work with a person as part of their transition out of long-term segregation, which was thought to contribute to a more successful discharge.

Arrangements for future accommodation

Panel chairs said there were 2 main routes out of long-term segregation:

• reducing restrictions so the person is no longer being segregated from the rest of the ward
• enabling the person to live in the community outside of a hospital setting.

People in services that are unable to provide a suitable environment for step-down support could face longer periods in segregation. One review report noted:

The person would need gradual stepping down of the restrictions. We were very concerned that there was no ward into which the person could be re-integrated.

Ongoing searches for appropriate accommodation were noted in several reports, with one saying a person was ready for discharge but that no suitable housing had been identified.

Positively, some reports also described adaptations to people’s next accommodation. In one instance, various stakeholders, including those responsible for funding, had come together to arrange a person’s future home, ensuring they identified a property close to the person’s family and had arranged the required adjustments and adaptations.

Are people’s rights and requirements supported?

People in long-term segregation required providers to implement personalised adjustments to help them transition out of segregation as soon as possible.

Adjustments included specialist equipment to meet sensory requirements, such as resources to help a person to sleep, which an occupational therapist at a service had implemented.

However, the IC(E)TR reports and panel chairs highlighted how some environments might contribute to the restriction of some human rights – including environments with limited privacy and access to appropriate outside spaces. The reviews also highlighted instances where people did not have access to equipment or environments that sufficiently met their requirements. For example, one review report highlighted that a person’s specialised sensory equipment was lost for months, but no further action was taken to replace it.

In IC(E)TR reports, we found evidence that some people were not receiving assessments, and some people’s assessments were being carried out in a way that did not properly identify their requirements. These issues meant that adjustments were not always made to enable them to progress out of long-term segregation. For example, one review report notes that “It had been long identified that the person needs a speech and language therapist assessment. However, the provider was not able to provide this due to funding”.

IC(E)TR reports highlighted the value of staff who are able to adapt, which is needed to support people’s changing needs (for example, sensory requirements and preferences, and mealtime preferences).

This demonstrates the importance of a personalised approach – rather than a standardised or prescriptive approach – to supporting people in long-term segregation. One panel chair underscored the need for people to be “supported by staff every day whom they know, who are passionate about getting them out and getting them to live their best life and reducing restrictions.”

The IC(E)TR reports also included examples where staff made personalised adjustments for people after completing training on the best way to do so.

By contrast, the reviews showed that where staff had adopted a more inflexible approach, people did not receive person-centred support. This sometimes stemmed from avoiding positive risks that could improve people’s experience. In one example, staff intended to move someone from their placement in long-term segregation to 3 different hospital-based settings in quick succession. The IC(E)TR report highlighted the “extremely detrimental” impact that this could have on the person and suggested that one move into more permanent accommodation would deliver an approach that centred more on the person’s experience than on organisational process and protocol.

Focus groups also highlighted that, when providers were not aware of the circumstances in which a person was admitted into long-term segregation or about their lives outside it, it is difficult to have a holistic understanding of the cause of any trauma they may be experiencing. This means there is a risk of people being treated in an unhelpfully standardised way rather than being given effective person-centred care. Trauma within long-term segregation was also noted in Baroness Hollins’ report where it was said that “Traumatised people are further traumatised by inappropriate hospital environments which do not make provision for their sensory and communication needs” and that some people were “further traumatised by the social and sensory deprivation they experience during lengthy periods of enforced isolation, as well as by the hospital routine and environment”.

We will continue to analyse themes from our IC(E)TR reviews, including feedback from people and loved ones participating in the reviews as the programme continues.

Medicines support for autistic people and people with a learning disability in hospital

In 2024, our Medicines Optimisation team asked hospital pharmacy teams how they were supporting autistic people and people with a learning disability to access medicines while in their care. This was part of our annual engagement calls with chief pharmacists at 192 NHS trusts, including acute, mental health, ambulance and specialist tertiary centres.

Health and care passports for autistic people and people with a learning disability provide healthcare staff, including pharmacy staff, with the right information to help them give the right care and treatment.

We found that knowledge of these tools varied, with pharmacy staff from mental health trusts being more familiar with them than acute trusts. Passports that were kept updated were seen as a good opportunity to support conversations about each person’s needs, especially before they are discharged.

The Reasonable Adjustment Flag is a national record that shows a person’s needs and may include details about reasonable adjustments. NHS services need to be fully compliant in using it by 31 December 2025. Many trusts told us they did not use their pharmacy IT systems to identify autistic people and people with a learning disability, although a few described the advantages they had seen since using the flag. For example, in one trust, the flag alerted the appropriate staff when people are admitted so they could implement reviews and support at the right time. This made a positive difference for people.

Chief pharmacists were able to tell us about various ways they were helping staff to develop their knowledge and skills to support autistic people and people with a learning disability, for example:

• using bespoke training on learning disabilities
• developing a pharmacy learning disabilities champion role
• running a learning disabilities educational week.

We asked trusts if they had any examples of good practice in how their pharmacy teams had helped people during their admissions to hospital. Overall, where NHS organisations understood the people they cared for and worked collaboratively within the local system, access to medicines tended to be more seamless. However, good practice was not universal, and further work is needed to ensure that autistic people and people with a learning disability have a better experience with medicines while in hospital, and when their care is transferred to another service.