Learning Disabilities, Autism and Neurodivergence Bill: consultation

Section 1: Health and Wellbeing

What We Heard

"Hard to reach", "lack of engagement/failed to engage", "did not attend", "non-compliant" "hypochondriac" are some of the ways that neurodivergent people and people with learning disabilities can be described or labelled in health care. We also heard that people with learning disabilities are often referred to as having 'challenging behaviour' when what is happening is a failure in communication.

Too many neurodivergent people and people with learning disabilities feel failed by a system they have tried to engage with, due to lack of understanding. This has fostered distrust and disbelief in the accountability of services. This can often lead to negative outcomes and a decline in quality of life. People with learning disabilities and neurodivergent people experience poorer health outcomes than the general population which can be preventable.

People with learning disabilities have some of the poorest health outcomes of any group in Scotland and die on average 20 years earlier than the rest of the population, which is largely preventable, according to research.^[128] Research also indicates that adults with learning disabilities are twice as likely to die from preventable illnesses.^[129]

The life expectation for people with Profound and Multiple Learning Disabilities (PMLD) is further reduced. There are still many premature deaths of people with PMLD caused by the lack of reasonable adjustments to facilitate their survival, causing delay or problems with diagnosis or treatment.^[130] People with PMLD exhibit a different pattern and higher frequency of health disorders which, coupled with communication challenges, lead to barriers in accessing and receiving healthcare.

Mortality is high among people with PMLD, with over 20% dying in a 10 year period^[131]. The principal causes of death arise from epilepsy, respiratory problems and difficulties in eating and drinking.

The key issue for effective health care for people with profound and multiple learning disabilities is good communication between the family, carers and all those involved health professionals. The importance of listening to the families and carers and respecting their knowledge and experience must be acknowledged by all health staff. Partnership working should also be strengthened between health professionals from the community, including allied health professionals who have specialised knowledge of persons with PMLD, and health professionals in the acute sector.

There is a need for effective procedures to be in place between GPs and other community health professionals so that in the event of an emergency admission all health staff are able to respond appropriately to the needs of the person with PMLD. There is a need to ensure sufficient training for health professionals on communication and learning disabilities in general and people with PMLD in particular.

The available evidence indicates that autistic people die on average 16 years earlier than the general population.^[132] There are many possible reasons for this gap, including poor professional understanding of autism among health and care staff, which can result in autistic people having signs of illness, or their needs, overlooked.

Autistic people are also at a higher risk of suicide than non-autistic people. Figures show that as many as 11-66% of autistic adults had thought about suicide during their lifetime, and up to 35% had planned or attempted suicide.^[133]

It is important that people with learning disabilities neurodivergent people and have good health outcomes to be able to participate fully in life. Poor health creates an additional barrier, potentially limiting or impacting the ability for people to be active in their communities, access employment or maintain relationships.

Reasonable adjustments should ensure that the needs of neurodivergent people and people with learning disabilities are included in all health services and preventative health screening programmes, and in the design and delivery of specific services and supports.

As part of the development of our Leadership and Engagement Framework, the mental health of Neurodivergent People and People with Learning Disabilities was selected as the first topic to be address by people with lived experience.

Several strands of research were carried out around mental health services and supports including peer research by our autistic and learning disability lived experience groups, as well as supporting academic literature reviews.^[134]

Key findings from the research across both groups identified shared issues around: diagnosis and/or lack of diagnosis of mental health issues; barriers and poor access to mental health services and a fundamental need for ongoing support.^[135]

What did LEAP think?

• There is a need for guidance and mandatory training for health and social care staff that is kept up to date. Implementation of training should be monitored.
• Annual health checks being implemented for people with learning disabilities must be implemented consistently without a 'postcode lottery'.
• There should be a choice about how to attend an appointment – online appointments should be made available where appropriate.
• In terms of mental health care, therapies and staff may not be neurodivergent informed, including in relation to learning disabilities. This can compound trauma.
• There is a need for trauma informed, neurodevelopmentally informed and culturally sensitive approaches.
• There is a need for timely access to diagnosis, better diagnosis guidelines and better signposting to support.
• There is a need for data on understanding and managing the demands placed on people when looking for diagnosis and other supports.

Where do we want to get to?

• Neurodivergent people and people with learning disabilities have improved health and wellbeing, live longer lives and are able to choose to be active members of society.
• The health and social care workforce is knowledgeable and skilled in treating neurodivergent people and people with learning disabilities.
• Neurodivergent people and people with learning disabilities access health care, services and supports without undue stress and the risk of traumatising or retraumatising experiences.
• Neurodivergent people and people with learning disabilities are empowered with knowledge and understanding, choice and control over their health care and treatment.

What rights do people have?

There are legislative rights in place though they are not specifically for people with learning disabilities or neurodivergent people:

• The Patient Rights (Scotland) Act 2011 (The Charter of Patient Rights and Responsibilities)^[136]
• The National Health Service (Scotland) Act 1978)^[137]
• The Health and Social Care Standards – prepared under the Public Services^[138]
• Reform (Scotland) Act 2019^[139]
• National Health Service (Scotland) Act 1978^[140]

What happens now?

National Care Service Bill – we remain committed to delivering a National Care Service (NCS) to improve quality, fairness and consistency of provision that meets individuals' needs. We are working with people with lived experience and frontline workers to co-design the detail of the NCS. Services will continue to be planned, designed and delivered at a local level, creating a person-centred, outcome-focused approach to care.

Health and Social Care Data Strategy – in partnership with COSLA, we are committed to developing a nationally consistent, integrated, and accessible electronic social care and health record. The integrated record will support people to tell their story only once and ensure that staff have the right information at the right time to deliver the right care.

Suicide Prevention Strategy - we are considering inequalities and diversity to ensure we meet the suicide prevention needs of the whole population whilst taking into account key risk factors, such as poverty and social isolation.

Mental Health Strategy Delivery Plan – this includes our current commitments to both annual health checks and the development of adult neurodevelopmental pathways for better diagnosis and support.

Dementia Strategy - we will have an enhanced focus on equalities, working with others to help minimise the structural barriers to participation, diagnosis, treatment, support and care, regardless of ethnicity, race, sex, gender reassignment, sexual orientation and additional disability or neurodivergence.

Racialised Health Inequalities -we are implementing the recommendations made by the Expert Reference Group on Covid-19 & Ethnicity in 2020.^[141] As part of this, we are building understanding of and commitment to addressing racialised health inequalities, taking an anti-racism approach. Action to date includes the establishment of the Racialised Health Inequalities in Health & Social Care Steering Group, and the development of an action plan with commitments across health and social care.

Lived Experience leadership and engagement on mental health and accessing services – we have brought together and are supporting lived experience groups of autistic people and people with a learning disabilities to create their own resources for health and social care professionals. The aim of this work is to increase professionals' awareness of these conditions and what is needed to support these groups to access support and services. The resources are being tested and evaluated between November 2023 and January 2024 within a variety of settings, including primary care GP practices, NHS 24 and the Scottish Ambulance Service.

Adult neurodevelopmental pathways – the National Autism Implementation Team (NAIT) is supporting NHS Boards and HSCPs to develop adult neurodevelopmental pathways. We funded a series of pilots around adult pathways for support and diagnosis. The report was published in March 2023 and we have accepted and are working on the recommendations.^[142]

Neurodevelopmental pathways for children and young people -there is a separate neurodevelopmental pathway for children and young people. In 2021 we published the National Neurodevelopmental Specification for Children and Young People: Principles and Standards of Care^[143] which sets out seven standards for service providers to ensure that children and young people who have neurodevelopmental profiles receive the right support.

What can the LDAN Bill do?

The Bill can help to create the right conditions for people with learning disabilities and neurodivergent people to access supports and services successfully when they need them, helping to prevent illness and improving overall health and wellbeing.

Proposal 1: Neurodivergent and Learning Disabilities Strategies

The overarching themes section sets out proposals for statutory strategies. We are proposing legislative requirements for these strategies in future and we could set out what the strategies must include. For example, in relation to health care, we could ask Health Boards, Integration Authorities and Local Authorities to set out in their local strategies how their workforce planning and service planning has taken into account the needs of the neurodivergent and learning disability populations.

Proposal 2: Mandatory training for the health and social care workforce

The overarching themes section sets out proposals around mandatory training. Earlier in this section, we set out that in England, the UK Government has introduced a new legal requirement for all health and social care services registered with the Care Quality Commission (CQC) to provide employees with training appropriate to their role on learning disabilities and autism. In England, the UK Government's preferred and recommended training for this purpose is called the Oliver McGowan Training.^[144]

We propose to legislate for a similar training requirement for health and social care in Scotland in the LDAN Bill. However, we could take a wider approach so that the mandatory training focusses on learning disabilities and neurodivergence - not just learning disabilities and autism.

Proposal 3: Inclusive communications and Accessibility

The overarching themes section sets out proposals on inclusive communications. We propose to legislate for neurodivergent people and people with learning disabilities to be able to request access to alternative means of communication where the offered means of communication is not suitable work for them. This could mean being able to request an online or telephone meeting rather than face to face, or other forms of communication.

We also propose better access to easy-read versions of public facing communications and documents. This could include a broad duty to make them available on request as well as an automatic duty to provide them in certain circumstances, such as a duty on NHS Boards and HSCPs to require appointment letters to automatically be produced in easy read.

In addition, we also propose legislating for an Accessible Information Standard for Scotland which would be applicable to NHS Scotland organisations.

We also plan to do more work to look at how far existing complaints systems meet the needs of neurodivergent people and people with learning disabilities.

Proposal 4: Patient Passports

We could place a duty on Health Boards, HSCPs and Local Authorities to ensure that a person's "passport" is able to follow them through whichever care pathways they are accessing, such as a hospital or care home admission, and that these passports include important information about their needs and preferences, including how to communicate with them in an accessible way. This could be similar to Advance Statements^[145] that can be used by people with mental health conditions, or it could be based on PAMIS's Digital Passports.^[146]

Passports like these help medical professionals to know how best to support people, their preferred treatments or communication styles, and can reduce barriers and frustration when people have to repeatedly restate their needs. There is currently no statutory duty placed on patient passports and, although they are encouraged as best practice, implementation is inconsistent.

Proposal 5: Annual Health Checks

We are currently rolling out annual health checks for people with learning disabilities across Scotland. A health check will be offered to everyone who is eligible by end March 2024, backed by £2m of funding per year. Given the significantly poorer health outcomes of people with learning disabilities, annual health checks will provide a mechanism to mitigate risk, monitor delivery of treatment, and measure impact. The rollout of health checks is backed by significant evidence of the benefits this can have. We want to consider including the delivery of annual health checks as a specific legal duty in the Bill.

Autistic people, people with FASD and ADHD also have poorer physical health outcomes and/or a lower life expectancy than the general population. There are many possible reasons for this gap, including poor professional understanding of among health and care staff, which can result in these groups people having signs of illness or their needs overlooked. Without the right understanding, these groups can miss out on adjustments needed for them to engage in medical appointments which can lead to distressing experiences and avoiding seeking advice. We could include a duty in the Bill which, in effect, extends the current annual health checks for people with learning disabilities to autistic people. We could also consider extending this to people with FASD and ADHD. We would want to first gather more evidence of the need for this.