Improving the care for people with autism and learning disabilities

In October 2019, the Care Quality Commission (CQC) released their annual assessment of healthcare and social care in England. The document, aptly named ‘State of Care’ reported that, despite challenging times, most of the care given across England is good and, overall, the quality is improving slightly. However, they also reported that service users are not always having good experiences and sometimes people don’t get the care they need until it’s too late and things have seriously worsened for them.

One of the sectors that was negatively highlighted in the report was the field of learning difficulties and autism. Even the cleverest spin doctor would be pressed to find a positive way to summarise the care in these areas. With 14 independent mental health or learning disability hospitals rated as inadequate and put into special measures in 2019, the CQC report was clear in its findings that ‘the care given to people with a learning disability or autism is not acceptable.’

Treat me well

Difficulties in accessing the right care can mean that people with a learning disability or autism often end up detained in unsuitable hospitals, being cared for by staff who simply don’t have the appropriate skills. Being in hospital is never an easy experience, but when someone struggles to understand or communicate with the world around them, being placed in an overly restrictive environment must be bewildering beyond any level of reasoning.

Person-centred care is a buzz word across all health and social sectors, i.e. care should be tailored to the needs of each individual. The only way this is possible is if staff have adequate skills, training and support. Yet, the reality is far from ideal – one of the issues that CQC inspectors found was that too many mental health and learning disability services are run by staff who are ill-prepared to care for their patients, the majority of whom have severe and enduring complex needs.

These findings are backed up by research from Mencap, the learning disability charity, who state that 1 in 4 healthcare professionals have never been given training about learning disability. Through their ‘Treat me well’ campaign, Mencap have been promoting the simple changes in care that can make a big difference, for example better communication, more time and clearer information can all help to make sure someone with a learning disability is treated well in hospital.

The move towards mandatory training

Following the tragic death of her teenage son, Oliver, in 2016, Paula McGowan campaigned and petitioned for compulsory training for all health and social care staff. At present, specialised training packages for people with learning difficulties and autism are seen as an additional bonus. However, this is set to change next year. Paula’s campaign led to a public consultation which addressed specific questions around training – the results of which were overwhelmingly in favour of the principle of mandatory training for all staff caring for people with learning difficulties and autism.

‘Right to be heard’, the Government’s response to the consultation on learning disability and autism training for health and care staff was published on 5^th November 2019 and outlines the next steps to rolling out mandatory learning disability training for health and social workers in England. A series of trials is due to run in 2020 before a wider roll-out of the training. The targeted programme will be named in memory of Oliver McGowan and it is widely hoped that this will help to improve the quality of care for people with a learning disability and prevent other families suffering what the McGowan’s have had to endure.

Aspects of training

Though the exact nature of the learning disability and autism training has yet to be formalised, it is expected to resemble the key themes addressed in the consultation:

Understanding learning disability and autism

This will address topics such as:

• Helping people understand autism
• Foetal alcohol syndrome disorder
• Neurodiversity, including conditions such as ADHD
• The challenges faced by people with learning disabilities or autistic people in the community, such as hate crime, exploitation etc
• The role of the family and carers
• Awareness of other conditions which often occur alongside autism: epilepsy, Obsessive Compulsive Disorder, social anxiety, dyspraxia, Pathological Demand Avoidance, Ehlers-Danlos Syndrome
• The increased risk of suicide in an autistic person
• Sensory processing issues – awareness of how light, sounds and the environment can overwhelm people. The impact of touch sensitivity

Legislation and rights

• The Care Act 2014
• The United Nations Convention on the Rights of Disabled People

Making reasonable adjustments

• Communication differences for autistic people with sensory sensitivities
• The role of specific communication methods such as: Makaton, TECCH techniques, visual timelines, social stories, symbols, Applied Behaviour Analysis, Team TEACH
• Awareness of issues autistic people may have with communication and practical advice on ways to communicate with autistic people
• How to involve and make best use of the knowledge and expertise of the family member or carer.
• Potential differences in males and females

Varying needs of staff

As with any speciality, staff will have differing training needs depending on their exact role. So, it’s likely that there will be different levels, or ‘tiers’ of training and that a mixture of face-to-face and elearning will be used.

• Tier 1: Those that require general awareness of people with a learning disability and autism and the support they need.
• Tier 2:  Health and social care staff and others with responsibility for providing care and support for a person or people with a learning disability or autism, but who would seek support from others for complex management or complex decision-making.
• Tier 3: Health, social care and other professionals with a high degree of autonomy, able to provide care in complex situations and/or may also lead services for people with a learning disability or autism.

These tiers are further explored in Skills for Health’s capabilities frameworks: Core Capabilities Framework for Supporting Autistic People and Core Capabilities Framework for Supporting People with a Learning Disability

Working in collaboration with Skills for Care, the National Autistic Society and Opening Minds, these frameworks describe the skills, knowledge and behaviours which people bring to their work and are used to support development and planning of the workforce and inform the design and delivery of education and training programmes.

Looking forward

As with all changes, it will take time, effort and a lot of resources to see the impact of new training programmes. But the recent announcements are widely seen as positive steps forward to ensure that people with a learning disability or autism get the best possible healthcare.