ICS0046

Written evidence submitted by Mencap

• Integrated Care Systems mark an attempt to integrate health and social care on a system- and place-based level. People with a learning disability often need support from both the social care and health systems due to their care needs and often complex health needs, which are common for people with a learning disability. Sadly, people with a learning disability can often miss out on the care they need from both systems, and fall through the gaps between the services. ICSs must provide the joined-up support that people with a learning disability often need.
• It is for that reason that people with a learning disability should be front and centre of considerations about the new ICSs from the perspective of commissioning, service provision and, crucially, engagement and communication. This means providing engagement opportunities that are accessible and that meet the varying needs of everyone, including those who are traditionally harder to reach.
• There is evidence emerging that integrated practices are proving hard to develop, with health and social care continuing to operate in silos, especially at a time when resources are tight. Clear guidance on ways of working will be crucial to the government laying down its expectations for a more collaborative approach that will benefit local populations, including people with a learning disability.

Pledge

Mencap has launched a pledge for ICSs ( https://secure.mencap.org.uk/en-gb/register-treat-me-well-pledge-pack ). We are calling on leaders in Integrated Care Systems across England to publicly show their commitment to delivering the health and care support needed by people with a learning disability.

This is to reflect the fact that:

• 1,200 people with a learning disability are estimated to die avoidably every year, when timely access to good quality health care could make all the difference.
• People with a learning disability die earlier than the general population – women die 26 years earlier, and men 22 years earlier. 
• Around 2,000 people with a learning disability or autism are locked up in in-patient hospitals when most could be living in the community with the right support.
• Despite wanting a job and being able to work, only 5% of working age adults with a learning disability known to the social care system are in employment.
• 88% of people surveyed recently said that their loved one with a learning disability is often or always sad.

In signing the pledge, ICBs commit to change this by:

• Nominating a system champion for learning disability and autism with responsibility across, and a sound understanding of, both health and social care.
• Working with primary, secondary, acute and community care and mental health providers to put reasonable adjustments in place so services are safe and accessible.
• Ensuring that our system provides joined up and co-ordinated care for people with a learning disability with complex health and support needs. 
• Analysing their LeDeR data and producing an action plan to reduce the number of avoidable deaths of people with a learning disability.
• Supporting the timely roll out the Oliver McGowan Mandatory Training.
• Building robust community support and reducing the number of people with a learning disability being detained indefinitely in mental health hospitals.
• Working with councils and the voluntary sector to make sure there are services to reduce loneliness and boost the confidence of people with a learning disability.
• Involving people with a learning disability and their families in meaningful engagement, co-producing services as standard.

Mencap wants to make sure that the experiences and needs of people with a learning disability are not forgotten, and that ICSs deliver on the vision set out in the NHS Long Term Plan in 2019, as well as looking forward to the opportunities presented by the commitment in the Health and Care Act 2022 for every ICB to have a lead on learning disability and autism, and on implementation of guidance coming out of the Down Syndrome Act 2022.

Prioritisation of people with a learning disability

People with a learning disability must be a priority for Independent Care Systems (ICS). They are a group who need substantial support from health and care services due to their needs, and the unacceptable inequalities this group continues to face. Changes to the health and social care system must work in the best interests of people with a learning disability and their families, avoiding creating additional barriers and addressing the long-term causes of inequalities.

Systems must be created to support, and encourage, joined up working, and not inadvertently create barriers for those patients who require accessible communication, extra resources, and/or collaboration between services. To make lasting change we must ensure that systems at every level, and individual services and the people who work in them, can meet the needs of people with a learning disability. Once this step change occurs, this must be monitored with clear lines of accountability.

Learning Disability Lead on Integrated Care Boards (ICB)

The NHS Long Term Plan sets out important priorities in realtion to health and care for people with a learning disability1, and the most recent Learning Disability Mortality Review (LeDeR) report from King’s College London makes a number of key recommendations specifically towards ICSs2. The Autism Strategy sets the expectation that all ICBs focus on learning disabilities and autism at the highest level. It recommends a named executive lead for learning disability and autism3. We believe for the aims of the Long Term Plan, and the recommendations from the LeDeR report to be actioned effectively, consistently met and monitored, ICSs must have a responsibility to prioritise the needs of people with a learning disability.

Within the 2020 LeDeR report there are a number of recommendations for ICS’s specific to addressing the needs of people with a learning disability from BAME communities, who are disproportionately affected by health inequalities4.

We believe that beneath the duty to consider the needs of people with a learning disability, ICS’s must also be required to understand, consider and meet the needs of people with a learning disability and their families from BAME communities.

We welcome the fact that each ICB will have a learning disability and autism lead and that this will be set out in NHS England statutory guidance for all ICBs. Given that people with a learning disability straddle both health and social care systems in a way that many other cohorts do not, it is essential that this role is able to bridge that gap effectively and for integrated practices within ICSs to facilitate that level of dual working. The learning disability and autism lead must be filled by someone with suitable expertise in both systems, or else they risk exacerbating the existing predilection towards an overly medical approach to learning disability.

Oliver McGowan Mandatory Training in Learning Disability and Autism

The training will ensure that health and social care staff, at the right level for their role, will have the knowledge and skills to provide better health and social care outcomes for people with a learning disability and autistic people. The training will be focused on raising awareness and understanding of autism and learning disability amongst health and social care professionals. It does not include training about treatments or specific interventions.

The training will provide staff with the confidence and skills to provide reasonable adjustments and better support autistic people and/or people with a learning disability in their care. Its content is based on the Capabilities Framework for Supporting People with a Learning Disability and the Capabilities Framework for Supporting Autistic People, both of which were developed with autistic people and people with a learning disability and their families.

One of the most important elements of the training, and something that Mencap and National Autistic Society have long called for, is that it is co-designed and co-delivered by people with a learning disability, autistic people, family carers (people with lived experience) and experts in the subject matter.

Mencap led one of four delivery consortia that piloted training for groups of health and social care staff, with our partners National Autistic Society, Royal College of Nursing, Access all Areas Theatre Group and Be Well Learning and Development. Along with people with a learning disability and autistic people, we were responsible for designing and delivering trials of the training to health and social care staff.

An independent evaluation of these pilots showed that the training was perceived by professionals as high quality and a good use of people’s time – with positive responses to all the training from approximately 90% or more of participants.7 We are delighted to be continuing out work with Health Education England to be supporting the national rollout of the training.

Following government acceptance of an amendment to the Health and Care Act, 2022, which put the training into law from July 2022, the Secretary of State for Health and Social Care is required to consult people with lived experience and other expert bodies in the drafting and revising a code of practice relating to delivery of the mandatory training. This requirement will be crucial in ensuring that the training is delivered to a consistent and high standard across England.

Linked to the above is the requirement for the Secretary of State to lay the code before both Houses of Parliament for approval and scrutiny as well as requiring the Secretary of State to review the code every three years.

Workforce Reporting

• The workforce is crucial to meeting needs, including people with complex needs who may require significant adjustments, planning and support. This includes providing all staff with adequate training. Rolling out the mandatory Oliver McGowan Learning Disability and Autism training must be a priority of the Government. All staff must be able to make basic adjustments to care and communication, but they must also be able to understand when specialist support is indicated. This specialist support is most often provided by learning disability nurses, a profession currently in crisis due to critically low numbers. Addressing and monitoring the learning disability nursing shortage must be a key element of the annual workforce report.
• There are approximately 165,000 vacancies in adult social care. Without regular assessments of staff sufficiency, and the impact of Government policy, there is a risk of undermining the support that can be offered to care users, if there are not enough staff to provide them with care.
• We believe there is a compelling argument to better monitor the state of the social care workforce to ensure that is sufficient to deliver high quality support and to be of sufficient size to meet the needs of all who access care and support. We believe the Government should provide independent assessments every two years on the current and future workforce required to deliver care across England alongside healthcare and public health services.

Transforming Care

It is very welcome that PAC has taken two previous inquiries into this issue, the 2017 report ‘Local support for people with a learning disability’ and in 2015 ‘Care services for people with learning disabilities and challenging behaviour (51st report)’.

Latest NHS Digital figures show there are 1,965 people with a learning disability and/or autism currently in inpatient mental health units with 93% detained under the Mental Health Act. Many are there due to a lack of the right support in the community and not because they need inpatient mental healthcare.

Transforming Care is a priority in the NHS long term plan. Previous commitments to transform care have not been met. The target set in 2015 (the ‘Building the Right Support’ 3-year closure programme) to reduce inpatient beds for people with a learning disability and/or autism by 35-50% and develop the right community support across the country by March 2019 was missed. Following this the Government promised to reduce inpatient beds by 35% (equivalent to an inpatient rate of 37 adult inpatients with a learning disability and/or autism per million population) by March 2020. This target was also missed. The latest target (set out in the NHS Long Term plan) is for a 50% national reduction in inpatient beds (equivalent to an inpatient rate of 30 inpatients with a learning disability and/or autism per million population) by March 2024.

Transforming Care will need to be a priority in the work of ICSs. Whilst there has been a slow reduction in the number of inpatient beds nationally, this masks the differences between individual ICSs. Progress so far across the country is very patchy. Latest figures show that only 20 out of 42 ICSs have met the adult inpatient rate promised by March 2020, and for a number of ICSs the adult inpatient rate is increasing.

There is still a lack of clarity as to how the work of Transforming Care Partnerships (TCPs) (48 of which were set up across the country in 2015 to transform care) is being embedded in ICSs so that objectives are successfully delivered. It is essential that guidance for ICSs and LD/autism leads on ICBs sets out what is needed. The Government’s new Building the Right Support Action plan was published in July 2022 but this does not include ICS-level plans. We would like to see ICSs publish plans as a matter of urgency for how they will ensure the right community support is developed in line with the Building the Right Support service model. The right community support is essential to meet NHS long term plan commitments to Transform Care and to lay the foundation for effective Mental Health Act reform, as set out in the draft Mental Health Bill, which is another important part of tackling the inappropriate detention of people with a learning disability and/or autism.

It is essential that the integration agenda learns from the failures of the Transforming Care programme to date, as well as from the pockets of good practice where some progress has been made. Transforming Care was portrayed as a ‘blueprint’ for integration – as success crucially depended on health and social care working effectively together to ensure people could get the right support at the right time in the right place. However, 11 years on from the Winterbourne View abuse scandal (following which -in 2012- the Government had promised to Transform Care for people with a learning disability and/or autism) there has been too little progress.

A key issue is the perverse financial incentives in the system which can push people inappropriately into inpatient care and keep them stuck there - the average length of stay is over 5 years. People can end up in inpatient units due to unwillingness to fund the community support needed. Currently, if the LA doesn’t provide the support needed, the person’s needs can escalate and they can end up in an inpatient unit funded by health. There is no incentive for the LA to fund the right support. The perverse incentives apply to admission as well as to discharge. It is essential that in ICSs, health and social care to work together to meet the needs of people with a learning disability and/or autism, including the use of pooled budgets and other measures which will help tackle perverse funding incentives.

Transforming Care must remain a key priority within the new structures. More clarity is also needed about what the monitoring and accountability arrangements will be. There must also be learning – and clarity for local people about what will be done differently - to ensure people with a learning disability and/or autism get the right community support and the objectives of Transforming Care are finally delivered.

The role of social care

While Mencap welcomes the new collaboration duties between health and social care, we are concerned that the premise for it is based on delivering against NHS priorities, such as the NHS Mandate, rather than against shared health and social care objectives. Consequently, Integrated Care Boards (ICBs) are largely a health body with very little oversight of, or alignment with, the provision of social care.

We also have concerns about the role of Integrated Care Partnerships (ICP), which will better represent local needs for social care and health provision, but these could have little impact on ICBs. This is due to the fact that ICBs will “have regard” to ICPs recommendations.

Health

The shocking health inequality people with a learning disability face is largely driven by barriers accessing timely, good quality healthcare. People with a learning disability are likely to have a higher number of long term health conditions, as well as complex support needs. It is essential that the ICB is able to plan and deliver healthcare services which meet the needs of people with a learning disability. This includes ensuring that services are accessible, able to make reasonable adjustments to care, able to co-ordinate care and work in partnership with others, and able to access specialist learning disability support when it is needed to ensure people can access care. Without this people with a learning disability will continue to be at grave risk of missing out on the care they need and dying avoidably. Furthermore, the role that unpaid carers, and social care workers play in supporting people with a learning disability to stay healthy, and access medical care when needed cannot be understated.

Integrated Care Boards must also be able to plan to meet the needs of people with a learning disability in any public health emergency, such as the coronavirus pandemic, and public health needs in general, for example supporting people to take up the offer of breast and cervical screening (uptake is currently low). For all these reasons we believe it is of the utmost importance that meeting the needs of people with a learning disability is a priority for Integrated Care Boards.

October 2022

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