LESSONS FOR LIFE

ADASS autism Lead Zandrea Stewart looks at the NICE Quality Standards published recently

Individuals who have autism have, for many years, felt that their lifelong condition is not recognised by society. Many people misunderstand autism, and a general lack of awareness leads to assumptions and prejudices.  People with autism want to be included in society and to be able to access the right support, if and when they need it, just like anyone else.

But, in order for people to receive the same level of service or outcome there needs to be a wide ranging awareness of autism across all services including health, social care, housing, education as well as with employers for people with autism in order for them to have a chance of being equitably engaged in lifes opportunities.

For some people additional support is required. This will be for many different reasons, but may result in causing distress and anxiety, preventing people from living full and rewarding lives.  It is at these times that the health and social care services need to have a greater awareness and understanding of the person and how their autism fundamentally affects them.

What is needed is a person-centred approach that focuses on outcomes for the individual and fundamentally promotes early intervention, prevention and enablement in order to ensure people with autism have the best opportunities. Considering a lifelong approach is essential in preparing young people for adulthood and help them build their skills and confidence in coming to understand how they can get the best out of the world they live in. 

I have been fortunate to be directly involved in the  autism awareness journey for many years commencing in the 1990s when I had the privilege to work with individuals who had autism and behaviour that was perceived to be challenging as an outreach worker, the recently published NICE Standards are another stage in that journey. And the Autism Refresh will be the next. 

The Nice Quality Standards should not be read in isolation, but considered alongside the NICE autism adult diagnostic guidance that was released in June 2012. In that way the terms and language used will be consistent with the Guidance they support. The Standards themselves also refer to other documents that need to be considered, including the Public Health Outcomes, NHS Outcomes Framework, Adult Social Care Outcomes Framework and the Autism Act (2009) and the National Autism Strategy Fulfilling and Rewarding Lives.

It is worth reflecting on the Nice Quality Standards as being a tool for organisations to consider as part of their development of local service provision, ensuring that best practice and quality is at the heart of service delivery. The role of the Standards is to provide a guideline to achieve the outcomes referred to in the aforementioned documents and local area needs assessments including market development.

An example of this is that the Standards state that someone with autism should wait no more than three months for an assessment to be started, and should be seen by a specialist team.

As highlighted in the National Autism Strategy Fulfilling and Rewarding Lives (which is currently in the process of its third yearly review) many adults have not been able to access a diagnosis through their local services, resulting in a lack of support and often considerable energy, time and money by individuals and their families. This also reduces the likelihood of making local connections for post-diagnostic support.

In the absence of a local diagnostic pathway, specific organisations and experts have traditionally provided this resource instead. Going forward, local routes to existing health care assessments will be a more positive and equitable experience. 

A key part of the Autism Strategy and the subsequent quality standards are to ensure that local CCGs and their partners determine a transparent local pathway. It is imperative that individuals can access this service in a timely manner and that it is delivered by skilled, trained professionals who have an understanding of autism, and who can offer the right post-diagnostic support, based on the need of the individual, within their locality. This should include access to a Community Care Assessment, primary and secondary NHS care as required, employment support, housing and so on.

Locally, the local joint strategic needs assessment, driven by area Health and Wellbeing Boards, must consider the needs of the local population and should determine how best to deliver the requirements of this population at a local level.  Therefore, the model of service delivery needs to take into account how to meet the outcomes required by the Standards.

Some areas have opted for the development of a separate specialist team, while others have an integrated model within the mainstream services with both autism-aware staff and specialist, skilled professionals in providing expert diagnosis and assessment.

As part of the third year review of the Autism Strategy, the length of time that individuals have to wait before receiving an assessment has been evaluated. The findings will feed into the (soon to be published) review documentation by Public Health England in support of the forthcoming Autism Strategy, to be refreshed by the end of this financial year. The summary paper can be found on the Public Health England Website (https://www.gov.uk/government/organisations/public-health-england)

With the current economic climate as it is, and the pressures being felt by local areas, there is a real need to consider how partners across health and social care can work collaboratively together to meet the requirements, provide timely and personalised support, and achieve positive outcomes for people.  Areas need to work together to formulate and deliver a model of support that is appropriate to local need and is cost effective and sustainable.

People who have autism may have additional complex needs including, in some cases, a learning disability. To support people in the most appropriate way, planning and packages of support must be person-centred, and focused around the individual needs of the person.

The NICE Quality Standards promote a psychosocial approach to supporting people, including those who may have complex needs and/or behaviour that challenges. The approach focuses on environmental, social and specific factors that may impact on an individual, rather than focusing on pharmaceutical approaches.

It is recognised that further sharing of knowledge and learning across key partners will provide a greater understanding of how to support individuals who may be experiencing particular challenges.

ADASS are proactively engaging and supporting partners to inform the revision of the Autism Strategy and will continue to contribute to further NICE Quality Standards.

Zandrea has managed mental health and learning disability services across social care and health for a number of years and has now joined the Winterbourne Joint Improvement Programme Team as a Principal Adviser.