Provider collaboration review: care for people with a learning disability living in the community during the pandemic

Page last updated: 12 May 2022

This report looks at what we have found through our provider collaboration review about the care for people with a learning disability who live in the community.



During the pandemic, we have seen how providers have responded quickly to try and minimise disruption to services for people with a learning disability. In particular, we have seen how the increased use of digital technology has improved collaboration with services, and has helped to support people living in the community.

Providers have also taken steps such as redeploying staff and enlisting the help of voluntary sector services to provide people with additional care and support.

However, there is no one-size fits all – what works for one person does not work for everyone. As a result, systems have needed to and continue to need to work hard to deliver the right care.

Many of the issues emerging from our review are not new. In a lot of cases, the pandemic has simply served to shine a light on pre-existing challenges, gaps and poor-quality care.

But it has also introduced some new challenges. For example, we know that people with a learning disability have an increased risk of respiratory illnesses and a higher prevalence of asthma, among other health concerns. All of these, amongst other factors, can make them more vulnerable to COVID-19. Figures from during the pandemic suggest that there has been an increase in deaths of people with a learning disability who use services as a result of COVID-19.

Previously, we have voiced our concerns about how well services have worked together, or collaborated, to share information and ensure that people receive the right care at the right time.

In particular, we have highlighted issues with transitioning from children’s services to adult services, and how when things go wrong people can end up in inappropriate environments.

These continue to be concerns emerging from our provider collaboration review.

Challenges for systems and health and care providers

  • Understanding and managing the impact of the pandemic on people with a learning disability, including children and young people, and the long-term effects of service disruption. This includes making sure that people receive the additional support and care they need, when they need it to prevent breakdown in care arrangements.
  • Making planning of transition from children’s to adult services a priority for improvement. This includes reviewing the impact of the pandemic and considering what steps can and need to be put in place to manage transitions more effectively, in a way that is inclusive for everyone.
  • Reviewing the use of digital technology in care, ensuring that people are offered a balance of remote and face-to-face care that is individualised to meet their needs. Where digital technology is used, providers need to make sure that they have steps in place to protect the safety and involvement of people with a learning disability. This includes making adjustments to make sure it is accessible for everyone.
  • Ensuring that the needs of people with a learning disability, including any health inequalities and specific needs relating to protected characteristics such as ethnicity, age and gender, are part of a system-wide strategy. This includes having learning disability specialists or champions as part of the governance structure.
  • Integrating learning into everyday practice, so that systems have a comprehensive view of their local areas. In line with recommendation two in the 2020 LeDeR annual report, this includes reducing disparities and ensuring people are able to remain in their communities and lead their best lives

Our next steps

As an organisation, we know that how we regulate services that support people with a learning disability needs to improve. In response to this, we are carrying out a year-long programme of work to transform the way we regulate services for people with a learning disability and autistic people.

What we did

We looked at the care and support for people with a learning disability in seven areas of England in March 2021.

Local areas and organisations covered:

  • Transforming Health and Social Care in Kent and Medway
  • Humber Coast and Vale Health and Care partnership
  • Our Healthier South East London ICS
  • Somerset ICS
  • Coventry and Warwickshire ICS
  • Mid and South Essex Health and Care Partnership
  • Joined Up Care Derbyshire

As part of our review we carried out the following activities:

  • Remote interviews and focus groups with providers across the seven areas of focus.
  • Analysis of available data around local systems, including demographic, inequalities, COVID-19 outbreak analysis, and learning disabilities data.
  • Case tracking of people with a learning disability – we looked at the experiences of 34 individuals
  • Survey of people with a learning disability who use services, and their representatives
  • Engagement with national voluntary organisations.
  • Remote access to electronic patient records/management computer systems with consent from general practices.

We are clear that our report is only reflective of what we found in the areas we looked at, during a specific period time. However, many of the themes and issues arising are not new and may resonate with other people, providers and systems across the country.

Access to care during the pandemic

James’ story highlights the negative impact that not being able to access the right care and support during the pandemic can have on people with a learning disability living in the community.

While the organisations we spoke with had tried to make sure that people continued to get the help they needed during the pandemic, we found that people’s access to services – including day services, respite services and healthcare – was disrupted.

Day services

Provision of, and access to, day services (including home services, education, physiotherapy and speech and language) varied.

Where people lived and how well the multidisciplinary teams worked together could impact on whether people were able to access the services they needed.

While these issues were not new, we heard they had been made worse by the pandemic.

Providers we spoke with were aware that not being able to access support services could lead to people feeling isolated and forgotten about.

To try and prevent or minimise disruption to services, providers and voluntary sector organisations increasingly turned to digital technology to provide virtual or online services and activities. This allowed people with digital devices, and the skills to use them, access a broader range of activities, social groups and educational tools and resources.

We also heard how technology was used to assist people in their daily lives. For example, one area told us that they had used the virtual assistant technology Amazon Echo to help people to set reminders to take medicines and play music.

Many interviewees spoke of the drive to do the right thing for people and remove barriers to ensure services could keep going during the pandemic. This included continuing to recruit new staff, and redeploying staff from elsewhere.

We also heard examples of providers, clinical commissioning groups (CCGs) and other organisations working together to regularly review their caseloads. This included monitoring resource and identifying people who were high risk, to ensure that no one vulnerable was missed and that people had the appropriate support.

In areas where multidisciplinary team working was already well-embedded, the pandemic improved joint working. Collaboration was seen as essential for continuing access to services, and in many cases, improving pathways for people with a learning disability.

For example, in one area we heard about how a collaborative multiagency approach between health, education, social care and parents had effectively met the needs of a young person with a learning disability during a period of crisis. Collaboration between services had helped the person to receive rapid access to specialist intervention, and they were given an appropriate education setting and bespoke curriculum.

However, in some areas day services had been stopped immediately – and for many people we heard that the number of visits they received had fallen. People also experienced a change in staff, who did not always have the right skills and experience, such as training in de-escalation and working with positive behaviour support plans. For some people and their families and carers, this made an already challenging and stressful situation worse.

Our findings are reflected in the results of the Coronavirus and People with Learning Disabilities Study for Wave 1. This found that 99% of the 621 participants reported community activities had stopped completely or reduced by the time of their interviews.

This disruption and lack of continuity of care caused distress and led to a deterioration in some people’s health, or led to them expressing their distress in ways that were difficult for others.

For example, one reviewer heard that a parent of a child with a learning disability believes that the loss of routine due to school and respite care being stopped caused distress and led to them expressing this in way that others found difficult. They also believed that the disruption to the child’s life caused their epilepsy to become less well controlled and meant the child required hospital treatment.

Respite care

The majority of families that we heard from reported that access to respite and short breaks was a significant challenge during the pandemic. At the time of our fieldwork, many families were still not able to access overnight respite care. Families were also worried and uncertain about what would happen with support services in the future.

Not being able to access respite care had a detrimental impact on the mental health and wellbeing of the whole family. For example, through our in depth review of case records we found evidence that having to provide 24 hour care for children with special educational needs had led to several relationship breakdowns with parents, and some siblings had to be placed with others for their safety and wellbeing.

Lack of access to respite services, fewer day services and increased reliance on digital technology, also increased the risk of safeguarding concerns. Some areas told us that during the pandemic they had seen rises in mental health issues, self-neglect, domestic violence concerns and non-accidental injuries to children.

As a result, safeguarding remained a priority for all the areas we looked at. We heard that safeguarding risks had been considered as part of care planning. Services told us that concerns were also addressed at regular multidisciplinary team meetings.

Healthcare services

People’s experiences of accessing healthcare services, including GPs, mental health and dentistry, during the pandemic was variable.

Areas that were better at meeting people’s needs highlighted the importance of having specific staff dedicated to learning disability roles. This included, for example, learning disability liaison nurses or health and wellbeing coaches with a specific interest in people with a learning disability.

These staff provided specialist advice and ensured that the needs of people with a learning disability were met when they accessed health services. This included:

  • Providing specific expertise around medication needs (including improving understanding of STOMP and STAMP), communication needs and reasonable adjustments
  • Performing physical checks
  • Developing hospital passports
  • Ensuring that patients known to have a learning disability were flagged on hospital records, and alerting staff to their needs.

Throughout the pandemic, we heard that access to medicines was mostly maintained. This included using volunteers for home-delivery services, remote supply of outpatient prescriptions, electronic repeat dispensing and prescription posting.

However, many of the areas we spoke with told us that pharmacy professionals were re-deployed to frontline roles. This meant that that specialist pharmacy support was sometimes lacking for medicines reviews. Some areas told us they used digital solutions to carry out medicines reviews for high-risk people with a learning disability.

Where medicines reviews had been recorded in line with the principles of Stopping Over Medication of People with a learning disability, autism or both (STOMP), they were carried out by a range of people including paramedics, healthcare assistants and clerical staff. In addition, we heard that pre-pandemic work on STOMP was reduced or stopped.

More generally, people experienced delays in accessing health care. This is reflected in the results of the Coronavirus and People with Learning Disabilities Study, which found that people who usually saw their healthcare professional regularly reported seeing them less or not at all since March 2020.

Despite all of the areas we looked at recognising the importance of annual health checks, pressures caused by COVID-19 affected their ability to complete these checks. This means that many vulnerable children, young people and adults did not always have the oversight of their health that they needed.

Mental health care

There was a mixed picture of access to mental health services. In particular, we heard that people struggled to access child and adolescent mental health services (CAMHS).

While this had been an issue before the pandemic, we heard that it had worsened during COVID-19. There were specific concerns around access to specialist beds, such as eating disorders.

When people could not access the care they needed, it led to a decline in the mental health of some people.

For example, we heard of one person reaching crisis point, who subsequently was detained under the Mental Health Act having previously been unable to access mental health services. As they received domiciliary care, they were not prioritised, and their subsequent mental health declined dramatically.

While we did hear some positive examples, for example CAMHS services working with schools to help people return to education, these were often down to individuals going above and beyond to support people. In one case, the mother of a young person receiving support from CAMHS, described their worker as “a lifeline through the pandemic who opened doors to services for their child.

People were concerned that integration back into society following the pandemic will lead to an increased demand for CAMHS services.

Dental care

Access to dental services and the delivery of these services was a concern in two of the areas we looked at. In particular, we heard about problems with accessing general anaesthetic and specialist dental locations being converted to intensive care units. This could lead to long waiting lists.

Not being able to access their usual dentist or dental surgery was distressing for some people with a learning disability, particularly if reasonable adjustments were not in place.

One area told us they had continued to use a mobile dentistry unit to provide continuity of care and ensure people access to dental treatment.

Another area reported that a pre-existing triage service was expanded to offer a 24-hour service, and they planned to continue at this level following the pandemic. However, we heard that there will be unmet need due to a lack of face-to-face contact.

Access to vaccinations

Our review of electronic records showed that, at the time of our review, 77% (of 146) records that noted people as having a learning disability had received at least one vaccination.

Initial guidance from the Joint Committee on Vaccination and Immunisation (JCVI) had placed people with a learning disability in priority group 6, though had given local areas scope to amend this to suit their local populations. Through local Learning Disabilities Mortality Reviews (LeDeR) or other case assessments, some areas had recognised the additional risks that people with a learning disability faced from COVID-19 and had made them a priority group for vaccination. We also heard this in our conversations with local Healthwatch organisations.

In one area local area leaders told us that prioritising people with a learning disability meant that families “felt safe, heard and cared for, it had a positive impact and was the right thing to do.”

We also heard how local areas had addressed concerns around vaccine hesitancy and how they had supported people when having their vaccination. Examples included:

  • Using appropriate communication story boards and Buzzy Bee vibration devices to reduce anxiety and block sensation.
  • Offering parents and carers vaccinations at the same time as the person with a learning disability. This reduced anxiety about leaving their adult children while they received the vaccine.
  • Offering home vaccinations, or vaccinations in people’s cars, for people who were anxious about visiting a vaccination centre.

Overall, people were positive about their experiences of receiving their vaccination, and that they felt supported and knew what to expect. One person told us that they, “knew what was happening and it didn’t hurt at all”.

In some areas we spoke with, it was noted that there was higher vaccine hesitancy among people from Black and minority ethnic communities. To encourage take up, these areas had taken steps to specifically engage these communities. This included, for example, delivering webinars by practitioners from Black and minority ethnic communities.

As attention turns to recovery, a key challenge for health and care providers will be to look at the long-term effects of service disruption people with a learning disability experienced during the pandemic. It will be key for providers to work together to consider what additional support and intervention will be needed to manage the impact of COVID-19 on people with a learning disability. This includes ensuring that people receive the right health and care support at the right time to prevent a breakdown in care arrangements.

Information and support

Through our engagement with national stakeholders, we heard that national guidance was confusing and had not considered the needs of people with a learning disability. For example, exemptions for people with a learning disability leaving the house for exercise were only included after lobbying.

Not having clear advice increased anxiety for people with a learning disability, including children and young people. One person described themselves as “hiding in my house” because they were so fearful due to the changing restrictions.

Many of the areas we looked at had noted the increased anxiety for people trying to understand the changing rules around shielding, social distancing, and use of personal protective equipment (PPE). We found evidence that they had tried to address this through good communication and desensitising measures.

In one area, domiciliary care agencies felt empowered to support people to go out for more exercise than the guidelines allowed. In other areas providers had worked with people and families to reduce fears around the use of PPE. For example, one hospital liaison nurse lead had filmed herself putting her PPE on so that people with a learning disability would be less anxious about seeing professionals wearing PPE in hospital or clinics.

We heard other examples of areas working strategically to understand and meet the needs of people using their services, including providing accessible information and making reasonable adjustments where required.

However, people’s experiences of care and support varied. How well services were meeting people’s needs was often down to pre-existing relationships with families, or good working relationships between individual practitioners.

We also heard examples of how individual professionals had stepped outside of their usual roles and responsibilities, going above and beyond to ensure that care was safe and sustainable. For example, one parent described their care coordinator as a “lifeline” during the pandemic who would ensure that she was available when needed. This provided much needed support to this parent and a confidence that their child’s needs would be met despite the difficulties they faced.

One person told us that they would rate the support they had from all their services as a 10 out of 5. He told us the people who had worked with him were brilliant. We did not find any evidence that this was as a result of system pathways, but down to pre-existing relationships. This means that we cannot be assured that this was the lived experience for all people with a learning disability in that area.

Information sharing about COVID-19

Generally, people felt well informed about the pandemic and why they could not see friends and family, and how to stay safe. This was reflected in some of the responses to our survey where people told us that they were aware of the need to keep themselves safe and prevent the spread of COVID-19:

“I understood the importance of wearing a mask, staying in, distance, after a few months when it did not go away.”
“Know that everyone wears masks, wash hands and keep distances.”

While people understood the need to use PPE, wearing face masks in particular could be a barrier because they found it difficult to hear or understand what was being said.

Some people mentioned using online resources and virtual events to find out more information about COVID-19. However, of 621 people who took part in the wave 1 study of Coronavirus and people with learning disabilities, 30% said they had not found it easy to find good and accurate information about COVID-19.

Mainly people received information through their care and support workers, or friends and family. We heard that this was because they were better at explaining the information in a way that they could understand:

“My support workers explain all about COVID [and] the changes which don’t stay the same. My support workers know me well and explain so I can understand.”
“The news on the television is not very clear. I don’t always understand what it all means. My mum is the one that translates it all for me.”

A priority in many areas was making sure that people with a learning disability understood that health services were still open, and would not avoid seeking treatment. Some of the ways in which providers and local areas managed this included:

  • Ensuring that information about accessing the service (such as opening hours) was available online/on websites.
  • GPs texting patients with a learning disability to let them know services were still available during the pandemic.
  • Launching a 24/7 information and advice line to provide increased support and signposting.

Most areas provided information about services, and the pandemic more generally, in an accessible or easy read format. Some had also made information, for example about changes to services, available in alternative languages or storyboards.

“At one of the acute trusts, the learning disability liaison service created a ‘social story’ that showed the changes to how people entered the hospital and created a resource pack to help people access services understanding the changes. The social story was a step-by-step photo story showing the way into the emergency department and how it had changed.”

Care planning

The areas we spoke with recognised the importance of careful care planning and information sharing to help people to move between services, and to avoid having to have repeated interactions with professionals.

Where services were working together and sharing information effectively, for example through the use of health passports, they were better able to ensure people received appropriate care and treatment that met their needs.

“Olive has benefitted from multidisciplinary support and intervention during the pandemic. Effective discharge planning, including contributions from learning disability nursing and therapy services; together with the development of a health passport with Olive’s family, ensured that she received appropriate care and treatment required to meet her needs.”

However, as is illustrated by Dennis and Harry’s stories, we found that information sharing between services and multidisciplinary teams was often lacking. This affected care planning for individuals, and the ability to ensure they were receiving care that met their needs.

Transition planning between child and adult services

During our review we found that the quality of transition planning varied. In the majority of areas we heard that it was either not present or was weak. Some areas told us that there were no existing transition planning pathways.

Not planning and co-ordinating the care of people when moving between child and adult services can mean that they do not always get the right care and support that meets their needs.

Not only did COVID-19 serve to highlight these issues, but the pandemic had made transitions even harder because of a lack of effective assessments and not being able to meet new providers and care organisations.

Issues with transition planning are not new. We have previously given clear recommendations, for example in our report Out of sight – who cares?, that this needs to improve. Organisations across local areas need to work together to ensure that transition planning is made a priority for improvement. This includes reviewing the impact of the pandemic on people moving between children’s and adult services. Local areas need to consider what steps can and need to be put in place to manage transitions more effectively, in a way that is inclusive for everyone.

Additional support

Some areas took a multi-agency approach to providing people with additional help, such as additional appointments and increased hours, to keep them safe at home and reduce hospital admission where possible. For example, one area had provided outreach support, by telephone, for people who would normally attend day services.

However, this was not consistent across the different areas we looked at, with people reporting mixed experiences of getting additional support. For example, while some reported being able to get extra help with ease, others told us about initial difficulties:

“Got extra support for shopping and didn’t have to ask. They asked me what I need.”
“I needed support with food shopping and cooking, and it took about 6 weeks to start.”

In many cases people had to rely more heavily on friends and family, or voluntary sector services for help with getting food and medicines, as well as getting information.

Some systems noted the potential impact if support from the voluntary sector does not or is not able to continue as we come out of the pandemic.

Digital technology also played an important role in enabling people to receive support in a different way than they normally would. Online resources were created and delivered through websites and apps to provide education and information as well as self-guided care and activities. In one area domiciliary care agencies created online activities for clients to use. In another area we heard how occupational therapists created a sensory website. For some people the move to using online support had helped them to engage and actively participate more than they had before.

For example, one area had introduced the use of avatar robots, called AV1 Robots. These robots supported young people who were off school, because of long-term illness or mental health issues, to keep engaged with school life and their learning, especially being part of their friendship groups. The robot attends the young person’s lessons at school, and the child then connects to the robot via an app so they can still take an active part in their class. Fifty-seven robots enabled shielding students to stay connected and have been used at all ages and across all education phases with students with physical and mental health illness.

While it is encouraging to hear how digital technology was able to support people, this was not accessible for all. For example, the Coronavirus and learning disability study highlighted that only 25% of 621 participants had downloaded and used the NHS COVID-19 app. We also heard how people missed being able to do their normal activities.

Use of digital technology

During the pandemic, digital technology was used across all systems to provide some types of care remotely. This helped to keep people, including people with a learning disability, safe from COVID-19.

Remote access

Providers told us they had increased their use of digital technology, such as Microsoft Teams and ‘Attend Anywhere’ to provide remote consultations. In addition, we heard that some areas had introduced specialist software and tools to support communication and deliver assessments of people with a learning disability.

For people like Sunil, who had the skills and confidence in using technology, we heard that virtual consultations helped to improve their access to care as they removed the barriers imposed by travelling to appointments, particularly cost and time. It also gave family and carers greater opportunity to attend appointments and be more involved in the person’s care.

In one area we heard that the local clinical commissioning group (CCG) saw increases in attendances for vulnerable adult meetings from the vulnerable adults themselves – the CCG established that for those people, being able to attend a meeting in their own environments was less intimidating and therefore they were more willing to attend.

Many respondents to our survey spoke positively about being able to access GP appointments quickly, usually by telephone or video call. However, we also heard that increased reliance on technology stopped some people from accessing the care they needed because they did not have a device to connect to the internet, their internet connection was poor or because they did not know how to use a computer or access the internet.

However, providers recognised that digital alternatives were not a ‘one size fits all’. Where appropriate, some providers had continued to offer face-to-face support.

In addition, some health and care professionals told us that the use of digital technology created challenges with building relationships with people who use services or with identifying signs of deterioration in health and well-being or safeguarding concerns. For example, our review of electronic records showed that physical health checks took place in only 23% of 87 telephone appointments and 78% of 117 face to face appointments.

This was a particular concern for people with more complex needs, where they may need to rely on family members or carers to support and/or speak for them during a remote consultation.

While there were definite benefits to the increased use of digital technology, both providers and people who use services told us that there was no one-size fits all approach, and that there needed to be a balance between remote and face-to-face consultations.

Digital challenges

Not everyone had access to the internet or digital technology or knew how to use this. Some areas had tried to address issues with access by supplying people with devices, such as tablets and laptops, but in some cases availability was limited.

Where people struggled to connect to the internet, for example because of lack of access to or poor-quality Wi-Fi, we heard that solutions were limited. Solutions that were mentioned included providing signal boosters or care phones. For example, one area had developed a care phone that didn’t rely on Wi-Fi, but used a sim card and was preloaded with contacts.

There were also examples of how areas had provided people with a learning disability and their carers with training and support on how to use digital technology. This included, for example offering help over the phone, and the creation of ‘digibuddies’ who offered peer-to-peer support to get people online.

Safeguarding concerns

Not only did reliance on digital technology prevent some people from accessing care, it also presented the risk that important signs and symptoms might be missed. This increased the risks of misdiagnosis and missing signs of deterioration in a person’s wellbeing. It also increased the risk of professionals not uncovering potential or actual abuse and/or harm.

There were also additional concerns about the safety of individuals online, with some areas reporting an increase in internet safety incidents. To address this, some areas had put measures in place such as educating people how to be safe online.

Looking to the future

Going forward, providers recognised there needed to be flexibility around the use of digital technology in delivering care.

A few systems described how they had involved people who use services, including people with a learning disability, in the design, monitoring and evaluation of digital solutions. This helped them to understand whether digital solutions were appropriate and met the needs of people within their population.

Where people are less confident in using digital technology, or rely on family or carers to help them during a call, there is an increased risk that they are not able to be fully involved with decisions about their care.

As a result, it is important that when reviewing the use of digital technology in care, providers need to be thinking about what steps can be built in to prevent this from happening. This includes ensuring that even where people may not have the capacity to make a specific decision, their best interests are pursued through active involvement and their consent is sought. Providers also need to ensure that they make adjustments to make it accessible for everyone.

How systems worked together

A key focus of our provider collaboration reviews is to look at how systems work together in a strategic way to meet the health and social care needs of the people that live in their local area.

By systems, we mean the commissioners, providers, local authorities and patient representative bodies that together form integrated care systems (ICS).

When they work well together, we find that systems have good working relationships in place. This includes effective sharing of information, as well as reviewing of and learning from incidents and feedback.

For the purpose of this provider collaboration review, we looked specifically at how well systems worked together to meet the needs of people with a learning disability during the pandemic.

Service planning and delivery

At the time of our review, while some areas had become an ICS, others were still working under the old model of sustainability transformation partnerships (STP).

In each area, the ICS or STP is responsible for overseeing the planning and delivery of services at a strategic level. This includes identifying the needs of people and any gaps in service. It also involves making decisions about system-wide priorities and investment in services. Liaising with providers and other stakeholders is a key part of this planning.

Some areas we looked at had a clear plan for the delivery of services for people with a learning disability, and had made changes in response to the pandemic. For example, preventing hospital admission became an important priority during the pandemic. To help reduce new admissions, some systems told us they had started using the Dynamic Support Register. Other areas had extended contracts to ensure continuity of service.

Despite this, we found that services were often planned by providers themselves or were a result of collaborative arrangements between providers and other stakeholders at a more local level.

In other areas people with a learning disability were not prioritised or specifically addressed in the strategy but considered along with the general population.

One primary care network group told us that people with a learning disability were often put in the ‘vulnerable’ category, rather than being considered people with specific and complex needs.

The pandemic highlighted gaps in information about people with a learning disability living in the community. For example, one area told us that it had ‘found’ a number of ‘hidden’ people with a learning disability who had not been known to services before. They were found because many had older carers who had fallen ill.

In addition, we heard that the pandemic had shone a light on service gaps for transition between child and adult services, completion of annual health checks, out of hours support, hospital discharge and outreach, forensic and crisis support.

In order to meet the needs of people with a learning disability, a key area of future focus for systems should be to make sure that comprehensive plans to meet the needs of people with a learning disability are part of a system-wide strategy. This includes having learning disability specialists or champions as part of the governance structure to make sure there is a clear plan to commission the services needed for people to remain in their community, with the right support to do so.

Support for staff

At the same time as ensuring the continuation of services, systems put in place measures to protect the safety and wellbeing of staff. This included:

  • Infection prevention and control (IPC) measures, such as providing personal protective equipment (PPE), cleaning, testing, social distancing and providing taxis in order to avoid public transport.
  • Encouraging and supporting staff to be vaccinated. For example, one area had set up a vaccine inequalities oversight group, which was looking at why there was lower uptake of staff from ethnic minorities.
  • Risk assessments for staff in frontline roles. This allowed organisations to plan IPC measures, staff redeployment or remote ways of working, as well as keeping staff safe.
  • Supporting staff who were shielding or deemed at risk to work remotely.
  • Wellbeing events to boost morale, including staff in conversations about the ‘new normal’, resilience support, and one to ones and appraisals with a wellbeing focus.

One area told us about the establishment of “Take 5 Rooms” in their local hospital. These were private rooms that gave staff the opportunity to speak to a colleague from human resources to ‘sound off’ and de-escalate or de-brief in a safe space after difficult days.

Systems recognised the potential long-term impact the pandemic could have on the health and wellbeing of their staff, but continuing to provide adequate staff support will be an ongoing challenge for the immediate future. This may be an area of focus that systems will need to assess.

Collaboration and information sharing

Communication and collaboration greatly affected how well systems worked together. While there were a number of examples of providers and organisations collaborating and sharing information, this was not always taking place at a strategic level.

In some areas, the pandemic had helped to improve collaboration and system working. In particular, the increased use of, and reliance on, virtual communications had made it easier to bring health and social care staff and people together to share information and make collective decisions more quickly. This helped to build stronger relationships between the different health and social care services, and improve the care people received.

We also heard how systems had used funding more collaboratively to respond to the increased risk for people with a learning disability. Some parents noted that there had been a more flexible and creative approach regarding personal care budgets, and the appointments of personal care assistants.

In many areas, people spoke of an improved understanding of the roles of different organisations across the system. In turn, this had led to positive improvements and outcomes, such as better engagement and signposting between services, and improved multi-agency working.

For example, in one area expectant mothers with a learning disability were supported through a planned multi-agency approach (this existed before the pandemic, but the process was strengthened during the pandemic through remote multi-agency discussions, which promoted early identification of these mothers). There was one named midwife working across two hospital sites, which had supported consistency in approach.”

We also saw evidence of increased sharing of electronic records and patient information. This meant that when a person accessed a service, the service would already have the relevant information and care could be tailored to meet their needs.

One area had launched a new integrated digital electronic record in November 2020. This was used widely across the area, giving people access to health and care information in one digital record. The system had flags for different population groups and specific areas of care, for example a learning disability flag and whether they had a do not attempt cardiopulmonary resuscitation decision (DNACPR) in place.

Health inequalities

On average, men with a learning disability die 23 years earlier and women 27 years earlier than the general population, often of preventable causes. The 2020 annual LeDeR report highlighted that people of Asian or Asian British ethnicity were 9.2 times more like to die between 18 and 49 year than a white British person.

Many of these premature deaths could be avoided by giving people equal access to health and social care services. This includes making sure that health and social care professionals have the appropriate knowledge and skills.

During the pandemic, many people with a learning disability were at increased risk from COVID-19 due to pre-existing conditions. However, we found that the physical healthcare needs of people, including how COVID-19 may present in people with a learning disability, were not always taken in account by systems.

We did find evidence that some systems had started to plan around health inequalities for people with a learning disability, but this was not consistent.

One system told us that they had identified the need to better understand the lived experience of people with a learning disability. Another system had identified the need to help people who might have anxieties around patients and staff wearing personal protective equipment (PPE) and having to physically attend doctor’s appointments.

A few systems had identified the need to ensure providers and staff across the system understood the health inequalities experienced by people with a learning disability. In particular, one trust had identified that A&E staff needed better training.

Some of the systems that we looked at also recognised the need to better understand how other characteristics, such as a person’s ethnicity, affected the inequalities that they faced.

For example, we heard of individualised risk assessments and information being made available in alternative languages or storyboards in order to meet the need of people using their services.

However, in more than one area we heard that the health inequalities of people from Black and minority ethnic communities with a learning disability were relatively unknown.

Given the increased health risks faced by people with a learning disability, particularly people from Black and minority ethnic communities, we are concerned by the lack of focus on health inequalities. Systems need to consider why this has been overlooked and what actions need to be taken to address this.

Shared learning

Systems told us that they had started to evaluate and share learning from ways of working during the pandemic.

The need to respond rapidly and adapt services due to the pandemic had led health and social care staff to reflect on the best way of working going forwards. This included evaluating what had worked well and should be continued, and what could be done differently.

Where changes had been positive, organisations were keen to continue rather than reverting to previous ways of working.

In one area, we heard that as part of efforts to reduce admissions to hospitals, the learning disability and mental health teams supporting children and young people had started to offer intensive home support.

This had highlighted the importance of earlier intervention at home, and the positive impact that avoiding inpatient care could have for the child or young person.

We heard that using a blended approach of face-to-face and remote consultations supported people to access timely provision to meet their health needs. One parent described video calls to support in managing how her child expressed their distress as 'brilliant'… multi-agency working to a co-produced crisis plan, supported the person to remain at home and avoid hospital admission.

LeDeR reviews had taken place in all of the systems in our review. However, reviews were at different stages, and learning and awareness among professionals and organisations varied.

Where LeDeR reviews had taken place, most systems told us that they did not involve medicines specialists who were trained to understand the needs of people with a learning disability. We also heard that medicines leaders were not always aware of the recommendations from these reviews or how learning was being shared across the system.

We heard that in some areas the LeDeR reviews had led to changes. For example, in one area plans were being developed to address health inequalities, which included listening to families. In the second area, they were working to better understand the impact of cancer screening for people with a learning disability.

While we heard that some learning was collaborative, we found that it was mostly at a provider rather than system level. There was little evidence about how this learning was shared or how it had led to changes. In one area, we did not hear any examples of lessons being learnt.

In line with recommendation two of the 2020 LeDeR annual report, systems need to ensure that learning is integrated into everyday practice so that systems have a comprehensive view of what needs to change in their local areas. This includes taking action to reduce disparities when planning services. This, together with shared budgets and joint responsibility across the system, will help systems to develop services that enable people to remain in their communities and lead their best lives.

Improving our regulation of services

The findings of this PCR support our wider ambitions to improve our regulation of services for people with a learning disability and autistic people.

As an organisation, we know that how we regulate the services that care for people with a learning disability and autistic people needs to improve. In response to this, we are carrying out a year-long programme of work to transform the way we regulate services for people with a learning disability and autistic people.

Above all else, we want to make sure that services for people with learning disability and autistic people are good. To do this, we are focusing on three key areas:

  • Registering the right services – I use services that support me in the way I want to live and where I want to live.
  • Supporting providers to improve – I will not be asked to move to a service that isn’t safe, I won’t be expected to continue to live in a service that doesn’t meet my needs.
  • Influencing the improvement of care pathways and ensuring that people are receiving the right care at the right time – I can access local services that meet my needs and get the right healthcare when I need it.