With the Government’s 10 year plan promising to improve the care of ‘groups most failed by the current system’, Kathy Oxtoby takes a look at how ICBs are caring for those with learning disabilities and what needs to improve
When you look at the state of care in the NHS for people with a learning disability, a concerning picture emerges – one of health inequalities, nursing shortages, avoidable deaths, and individuals missing out on vital support.
There are around 1.5 million people with a learning disability in the UK, including over 1.2 million adults aged 18 or over.
On average, people with a learning disability are dying almost 20 years younger than the rest of the population, according to the Learning from Lives and Deaths – People with a Learning Disability and Autistic People (LeDeR) report for 2023, published in September 2025.
ICBs in England have statutory responsibilities to plan, commission, and fund health services for people with a learning disability. But there are fears that changes to the system will have an impact on their care, following the announcement of the NHS England and Department of Health and Social Care (DHSC) merger, and the cuts to ICBs.
Dan Scorer, head of policy at learning disability charity Mencap, says: ‘We’re very concerned that with the merger of DHSC and NHS England, as well as the merger of ICBs into larger bodies with staff spread more thinly across wider areas, the needs of people with a learning disability may be given less focus amidst these significant structural changes and reconfigurations at a local level.’
ICBs are also responsible for ensuring staff receive appropriate training, such as the Oliver McGowan Mandatory Training on Learning Disability and Autism, to meet the needs of people with a learning disability.
These new training guidelines for the care of people with a learning disability launched earlier this year, with the code of practice becoming final on 6 September. The aim of this is to improve safety and deliver more personalised care to patients and follows the case of Oliver McGowan, where healthcare staff failed to understand how autism presented alongside his epilepsy.
So how are systems caring for those with a learning disability and what more can be done to provide the best for patients?
Innovation and challenge
As with ICBs generally, there is variation across the country regarding the healthcare being delivered to people with a learning disability.
There is innovative work and good practice taking place in the system, such as in Bath and North East Somerset, Swindon and Wiltshire ICB, where a specialist inpatient unit to meet the needs of people with a learning disability or autism and who require specialist mental health care is being developed.
Partnering with Avon and Wiltshire Mental Health Partnership NHS Trust, The Kingfisher centre will open in March 2026 and provide therapeutic, person-centred support closer to home.
Cornwall and the Isles of Scilly ICB have a number of services to help support patients with a learning disability. These include Citizen Checkers which helps settle patients back into their community after being an inpatient and Patient Partners which works across GP practices to ensure services work well for patients with a learning disability.
‘We are particularly proud that in Cornwall and the Isles of Scilly, very few people with a learning disability need to be sent out of county for a mental health placement,’ says says Susan Bracefield, acting chief executive at Cornwall and Isles of Scilly ICB.
More than 75% of people with a learning disability on GP registers in Cornwall ICB received a health check in 2024-25, she adds. And the number of people on the learning disability register has increased from 3,248 in August 2024 to 3,312 by August 2025.
Meanwhile in South Yorkshire ICB, more than 22,200 NHS staff have completed the Oliver McGowan training to date, which is over 40% of the regional workforce.
But while there is good practice taking place in the system, there are also challenges.
‘We’re currently still seeing challenges of systems not being joined up and with gaps in delivery,’ says Mr Scorer.
‘Healthcare leaders must build and maintain services that ensure teams on the ground have the time and information to work together, particularly in the case of patients with very complex health and/or support needs.’
Commissioners should ‘ensure they’re actively encouraging their services to meet the needs of people with a learning disability and to be seeking opportunities to reinforce the message that meeting these needs is a priority’, he says. ‘It’s important their own systems do not reinforce or create barriers to care.
‘We frequently hear about a breakdown in continuity of care and confusion over who is ultimately responsible for a patient at what point.’
Finance changes
Dr David Crichton, chief medical officer at NHS South Yorkshire, added that the recent decision to move most of the System Development Fund (SDF), including learning disability and autism funds, into core ICB allocations, will also present challenges.
‘While this provides greater local flexibility to target resources where need is greatest, it also places a clear expectation on ICBs to protect funding for interventions that are proven to prevent harm and reduce avoidable admissions. Local systems will have to demonstrate strong stewardship to ensure these gains are not lost as national ringfences are removed,’ says Dr Crichton.
Moving some learning disability funding into ICB core allocations, is a shift that brings ‘both opportunity and risk’, he says. On the positive side, he says it enables ICBs to align and pool budgets more effectively, reduce duplication, and direct investment to where data and local intelligence show the greatest need. This supports integrated commissioning and place-based decision making.
‘The challenge lies in maintaining focus amid wider financial pressures. Without robust local governance, clinical leadership and co-production with people with lived experience, there is a risk that successful initiatives lose visibility or momentum. Protecting what works must remain a shared priority across the system,’ says Dr Crichton.
Inequalities in care
Inequalities in access to care for those with a learning disability also persist.
‘It’s shameful people with a learning disability are dying on average around 20 years younger than the general population, and that people with a learning disability from ethnic minority groups die even younger – only around four in ten live to see their 65th birthday,’ says Mr Scorer.
‘In 2025, no one should die early because they don’t get the right treatment. Poor quality healthcare causes health inequalities and this is reflected in the fact nearly four in ten of all deaths among people with a learning disability are deemed avoidable.’
The Nuffield Trust has said that opportunities are being missed to help avoid these deaths and enable patients with learning disabilities to live longer.
A report called Preventing people with a learning disability from dying too young by the Nuffield Trust said there are ‘large inequalities in access to health services’ for people with a learning disability compared with the rest of the population.
Researchers looked at five key areas of healthcare in England that people with a learning disability should have access to: prevention of obesity, cancer screening, mental health support, annual health checks, and early diagnosis of conditions.
They found ‘clear evidence that people with a learning disability are not always able to get equitable preventive support’.
‘Many opportunities for support that could help to stop people with a learning disability from getting sick and dying too young are being missed as a result of disjointed care, and information and communication that are not well suited to the people they are being provided to,’ says Jessica Morris, a fellow at the Nuffield Trust, who co-authored thereport.
The report found that people with a learning disability are more likely than the rest of the population to be obese, cancer is often diagnosed at a later stage for people with a learning disability than for the rest of the population, and people with a learning disability are more likely to have mental health problems, but access to good mental health treatments is often poor.
The CQC’s annual State of Care report published this October, shows that the majority of people with a learning disability are missing from their GP’s learning disability register.
‘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,’ the CQC says.
This October, in a joint letter sent to GPs across the country, health secretary Wes Streeting, and Ismail Kaji, Mencap’s government engagement officer, who has a learning disability, called on all GP practice staff to proactively identify and record eligible patients on their GP learning disability registers, and ensure they receive annual health checks and health plans.
Providing annual health checks and health action plans, the letter says, ‘ensures access to additional support (such as vaccinations, immunisations and cancer screening), accessible information and tailored support to meet their reasonable adjustment needs’.
Mr Scorer says GPs must prioritise getting everyone onto the learning disability register and complete annual health checks, where existing and potential health conditions can be identified and treated early on. ‘These initiatives work and we must keep doing them.’
‘Being on the register gives people with a learning disability access to annual health checks that have been shown to help reduce unmet need, as well as enabling them to access cancer screening and also other reasonable adjustments,’ says Ms Morris.
Annual health checks are also ‘a good way of picking up health problems earlier’, she says.
The Nuffield Trust report’s recommendations include that ICBs should use local data ‘to review the number of people on GP learning disability registers and organise targeted information campaigns to encourage people to join the register’.
These campaigns could be co-produced with people with a learning disability, working with local communities to drive improvements, says Ms Morris.
Shortage of learning disability nurses
Another challenge is the shortage of learning disability nurses.
This October, a coalition of leading charities, campaigners and health organisations, spearheaded by the learning disability charity Mencap, wrote to health secretary Wes Streeting warning of ‘an imminent collapse in learning disability nursing that threatens the lives of thousands of people with a learning disability’.
The joint letter highlights a 43% decline in learning disability nurse numbers since 2009, that whole regions have been left without training courses as universities close programmes, and the predicted collapse of the profession by 2028 if urgent action is not taken.
The letter called on the Government to recommit to and fund training targets promised in the NHS Workforce Plan, launch national recruitment campaigns to attract new learning disability nurses, guarantee financial support for students and employers to sustain training and apprenticeships, and set minimum staffing levels to ensure safe care and protect lives.
‘Numbers of learning disability nurses have gone down by over 40% over the last 15 years,’ says Mr Scorer. ‘Whole regions, such as the south east now have no institutions offering learning disability nursing courses, with further courses regularly closing across the country. The forthcoming NHS Workforce Strategy urgently needs to address this.’
Jonathan Beebee, Royal College of Nursing (RCN) professional lead for learning disability nursing, says: ‘There is a serious concern about the future of registered nurses in learning disabilities. Over the past 10 years, the number of nursing students choosing learning disability nursing has significantly decreased.
‘This decline reduces the supply of future registered nurses in learning disabilities for local health and social care. This reduction in a skilled workforce to address the health inequalities faced by people with learning disabilities is highly concerning.’
Government ambitions
Looking ahead, the 10 year plan sets out the Government’s vision for the NHS – but what does this mean for people with a learning disability?
Ms Morris says with the ‘big shifts’ in the 10 year plan from hospital to community and treatment to prevention, ‘both should encompass people with a learning disability and improving their early access to health and care support’.
However, she says there is a lack of specific initiatives to improve care for people with a learning disability and autism in the plan.
She says the overall concept of moving care closer to home would help to benefit people with a learning disability in terms of bringing health professionals together and coordinating care better. ‘We know that care coordination is an issue for people with a learning disability, especially those that have multiple health conditions.
‘However, there are severe staff shortages and already huge pressures on the current community care system, so there’s a long way to go in realising the end goal here.’
Mencap is ‘supportive of the shift from hospital to community, particularly in relation to the ongoing work to ensure hundreds of the 2,025 people with a learning disability and autistic people detained in mental health settings are discharged into the community’, says Mr Scorer.
‘We welcome the Government’s leadership on the Mental Health Bill and in future removing learning disability and autism as grounds for detention.’
On Neighbourhood Health, he says it is ‘vital the 43 pilot areas are engaging with people with a learning disability and their families, as they plan new integrated services’. ‘This could be a huge opportunity, but only if marginalised communities are at the heart of designing new services.’
The shift from analogue to digital also presents opportunities, but only if new technologies are designed with and tested by people with a learning disability, such as an expanded NHS App, he says. ‘If we get it right for people with a learning disability, we will make services usable and inclusive for all. It is important that non-digital options are retained, to make sure people who experience digital exclusion are not further marginalised.’
Mencap would like to see ‘a healthcare system built to meet the needs of people with a learning disability, that recognises when someone has a learning disability, understands their needs, and flags them to the appropriate people and services’, says Mr Scorer. Services need to have the systems and resources they need, as well as ways of working that anticipate and address people with a learning disability’s needs as everyday business, he says.
‘We want people with a learning disability to get the reasonable adjustments, support and accessible information they need and staff who are well trained and have the capacity to meet their needs.
‘We need strong and informed learning disability leadership at all levels of the healthcare system, with clear aims, guidance and accountability. We want to see healthcare professionals communicating and making decisions together.
‘If the Government is serious about achieving the shift to prevention, we need ICBs to embrace social care and the joined up person-centred approach to supporting someone to live their life to the full,’ says Mr Scorer.
‘We have a very long way to go before everyone with a learning disability has access to the same quality of physical and mental healthcare as everyone else.’
