Learning Disabilities, Autism and Neurodivergence Bill: consultation

Section 2: Mandatory Training in the Public Sector

What we heard

One of the key themes we have heard through our scoping exercise, and from stakeholders and the LEAP, is that that there needs to be greater awareness, understanding, and training on learning disabilities and neurodivergence. In particular, there is a need for this when these groups are trying to access help, support and services and to exercise their rights.

It is thought that better awareness of the needs and experiences of people with learning disabilities and neurodivergent people will help to reduce stigma and also improve their access to the services and support available to them, improving overall outcomes for these groups.

Whilst there can be training options available to public sector professionals to help them better understand and communicate with people with learning disabilities and neurodivergent people, undertaking this training is not a statutory requirement and is not necessarily developed or delivered by people with lived experience. This means that people who work in public services, such as in the NHS or social care, the police and prisons, can choose to do training or not, if it is available to them. It is also not available consistently across different public services or delivered to a set standard. It can therefore vary in quality and effectiveness.

There are some examples of good practice where there is a focus on disability awareness training in some public sector areas, in a way that is tailored to specific roles, such as some examples seen across transport (as discussed in another section of this consultation).

We have heard that there is a particular need for increased awareness, understanding and training across the health and social care workforce. In England, the Health and Care Act 2022^[81] introduced a new legal requirement for all health and social care service providers registered with the Care Quality Commission (CQC) to provide employees with training appropriate to their role on autism and learning disabilities. In England, the UK Government's preferred and recommended training for this purpose is called the Oliver McGowan Training.^[82] We have heard that people would like a similar requirement for training in Scotland. One of our LEAP members told us that:

"Like many other autistic people, I struggle with expressing pain. I can't express pain on a sliding scale, so when my doctor asks me what my pain level is on a scale from 1 to 10, I can't answer. This means my pain has often been dismissed or not been taken seriously, leading to misdiagnosis and prolonged pain in the past.

Cont…

"Doctors who rely on body language and tone when making diagnoses can miss important symptoms when assessing me. As an autistic person, I don't express these things in the way they expect. This can cause them to not take me seriously when I tell them about my symptoms.

I'm not good at verbal communication. Thinking of answers in the moment can be challenging for me, so I have to prepare a list of my symptoms when going to the doctor and practice what I'm going to say. Some doctors view this with suspicion and accuse me of sounding "too rehearsed". They think I'm trying to trick them.

I need doctors to understand my differing communications needs so I can receive the same level of care as everyone else.

Autistic people face a documented barrier to healthcare access, and the difficulties in communication is one of the main reasons."

Another example from LEAP members on why training should be mandatory is the experience of people with learning disabilities when presenting at hospital in pain or in a health emergency. It can often be their experience that health professionals and clinicians can overlook the presenting health issues, believing that the symptoms or behaviours are to do with a person's learning disability without looking at anything else that could be wrong. This is called 'diagnostic overshadowing'.

Feedback from consultation on the National Care Service highlighted that social care staff think that "There is a need for more consistent and appropriate training to develop the essential skills for a variety of roles, and ensuring the time for development is also crucial"^[83]

Besides our work on the National Care Service, the need for awareness raising and training for public sector staff on learning disabilities and neurodivergence has featured consistently across our work, including:

• Complex Care (Coming Home Report)^[84]
• Our Mental Health Strategy^[85]
• Mental Health and Capacity Reform – including the Rome report^[86] and the Scottish Mental Health Law Review^[87]

What did LEAP think?

• Disability awareness training is needed across all of the public sector, and training specific to neurodivergence and learning disabilities is also needed as part of this or in addition to it. Some training is outdated and isn't developed by or delivered with lived experience.
• There is a need to always include people with lived experience in developing and delivering training. Mandatory training should be co-designed, coproduced and co-delivered with lived experience groups.
• Lived experience trainers should be able to access appropriate support for training delivery as well as appropriate payments for training work undertaken.
• There is a need for trauma informed, neurodevelopmentally informed and culturally sensitive approaches.

Where do we want to get to?

• Public sector staff who work directly with members of the public have confidence and skills in being able to understand the needs of neurodivergent people and people with learning disabilities, resulting in improved services and communication and reduced health inequalities.
• Neurodivergent people and people with learning disabilities feel listened to, valued and understood by public sector staff who are take account of their individual needs

What happens now?

In our Towards Transformation Plan^[88] there is a commitment to explore establishing mandatory autism training and learning disability training for all NHS staff.

We currently fund NHS Education for Scotland (NES) to engage with NHS Boards on the Autism Training Framework^[89]. The framework provides training on a tiered pathway from "autism-informed" to "expertise in autism" and is available online to all NHS and Social Care staff to ensure they have knowledge of autism in a way that is tailored to their role.

NES has also developed online learning for staff working with people with learning disabilities. This provides an education and training hub designed to meet the needs of staff on a range of topics including trauma, health inequalities, behaviours perceived as challenging, and improving psychological care and support.^[90]

The National Autism Implementation Team (NAIT), funded by the Scottish Government, is a practitioner researcher partnership based at Queen Margaret University. It has produced professional learning materials on autism for schools and early years establishments.

We have also provided funding to support the establishment of a FASD Hub in Scotland with the aim of providing support, training and advice to families, carers and professionals supporting children affected by FASD. Funding has also been provided to the Fetal Alcohol Advisory Support and Training Team (FAASTT) to allow the delivery of training to improve knowledge, attitudes and confidence in professionals working with individuals with FASD^[91].

Our Leadership and Engagement work on Mental Health and Accessing Services is currently underway, led by autistic people and people with learning disabilities. These lived experience leaders create resources and training to inform and support health and social care staff to increase awareness, understanding and skills. The resources are being piloted between October and December 2023 in some GP practices, NHS 24 and the Scottish Ambulance Service.

Currently, under the Patient Rights (Scotland) Act 2011, Scottish Ministers must publish a Charter of Patient Rights and Responsibilities^[92] that summarises the existing rights and responsibilities of people who use NHS services and receive NHS care in Scotland and what you can do if you feel that your rights have not been respected.

The 2011 Act gives patients the right to receive healthcare that:

• considers their needs;
• considers what would most benefit their health and wellbeing; and,
• encourages them to take part in decisions about their health and wellbeing, and gives them the information and support to do so.

The Charter states that:

• When accessing and using NHS services in Scotland I have the right to safe, effective, person-centred and sustainable care and treatment that is provided at the right time, in the right place, and by the most appropriate person; and, as part of this,
• My needs, preferences, culture, beliefs, values and level of understanding will be taken into account and respected when using NHS services

What can the LDAN Bill do?

Whilst there are training resources available across the public sector, including in health and social care, undertaking this training is not currently mandatory, or a statutory requirement. This can lead to inconsistency in the experience of neurodivergent people and people with learning disabilities, which has been reflected in the feedback we have received from the LEAP and others with lived experience. The need for better understanding and knowledge through consistently applied and available mandatory training has been a key theme raised with us.

We know that having access to staff in public services who are informed and able to understand and communicate with people effectively can make a significant difference:

• People are more likely to engage with services;
• People are more likely to seek help and support at an early stage meaning crisis can potentially be avoided;
• Staff will feel more confident in meeting needs successfully; and,
• Early engagement with health and social care supports will allow a greater focus on prevention and reduce health inequalities.

Proposal 1: Mandatory Training for Public Services

We therefore want to consider how we make training mandatory for public facing staff in some public services.

In the first instance, we would like to consider implementing the same approach as in England, by placing a mandatory training requirement on health and social care staff.

However, we could also consider extending this to other public sector areas. For example, the justice system, which could include the police and prison staff, and in the education system for teachers and other educators. This is discussed in more detail in other sections of this consultation.

Although the approach in England relates specifically to training on autism and learning disabilities, we could consider a broader approach for training to be inclusive of neurodivergence more generally, as well as learning disabilities.

As part of our approach to mandatory training we want to think about how people with lived experience should be involved.