One thing I want to know more about is …?

At the end of Day 1 at the Newcastle and Cardiff Public Services seminars, we set everybody the task of completing the sentence, “One thing I want to know more about is…..?” Read people’s responses here. 

Newcastle Seminar

Outcomes for adults

• Would autism specific advocacy make a real difference to the lives of people with autism?
  
• Has all of the autism awareness training worked?
  
• Do childhood characteristics and intervention influence adult outcome in autism?
  
• How research can look into commissioning priorities, budget spend and achieving of outcomes for the whole autism population?
  
• When someone with autism adjusts well to their condition, what enables them to do this?
  
• How much is good adjustment attributable to intrinsic factors (e.g. learning, adaptation, experimentation) and exterior factors (e.g. social and occupational support, accommodating environment).
  
• I wonder whether good adjustment arises on some kind of mediation or coaching process.
  
• Can environments – city centres, public buildings, schools, social housing – be designed to facilitate access, reduce stress and sensory symptoms and produce better QoL for people with autism?
  
• What post diagnostic health service model lead to best outcomes (QoL) for adults with learning disability who have mental health conditions, and those without mental health conditions?
  
• Can we identify meaningful changes that can be implemented quickly to make a difference to people in desperate need?
  
• Most research has focussed on long timescales but something is needed in the interim.
  
• What outcomes would commissioners like to see measured?
  
• Do ‘keyworker’ service models deliver better outcomes for adults with autism? e.g. better QoL, lower levels of mental health difficulty?
  

 Research priority setting

• How might the JLA PSP take account of the views of people with moderate to profound intellectual disability?
  
• How can public services research be ethically co-produced with autistic people in a way which avoids tokenism?
  
• How can we (autistic people and organisations) have more influence on what research gets funded?
  
• Nature and extent of research projects being undertaken/could be undertaken.
  

 Learning from other sectors

• Are there approaches to research and social care in other research and health realms we could learn from?
  
• What we can learn about research-public services models in other areas (dementia, mental health, looked-after children’s outcomes, cancer etc.)?

Data sharing and working with public bodies

• Would commissioners work with researchers to share ‘big data’ within an appropriate governance framework?
  
• To what extent can/will public bodies contribute transparently to research partnerships considering the legal and reputational risks of admitting practice failures?
  
• Would LA consider funding or co-funding research data collection or analysis with other organisations?
  
• Available funding for service development?
  
• How local authority provision is quality controlled by external evaluators (NAC, CQC)?
  
• How we can build more effective partnership? Need to establish relationship between research and commissioning (partnership working).
  
• What factors influence whether a partnership works or not.

Diagnosis and diagnostic services

• How to manage diagnostic variation in research?
  
• How to manage self-diagnosis in the research population?
  
• How to manage diagnoses given by different clinicians?
  
• How to manage the population that has not achieved diagnosis (because they are not aware of it) i.e. unrecognised.

Next steps…

• Key action points and take aways from this seminar.
  
• How and when will these be followed up and reported on? e.g. collaborative research priorities, feedback on positive outcomes to delegates?

One thing that I’ve learned is:

• Using media effectively would help raise awareness of research, collaboration and partnership, generate funding
  
• Need to strengthen the link between research and commissioning – range of autism research activities which I need to found out more about to inform future commissioning – balanced approach to research, not purely shaped by autism community reps/autistic voice, and subsequently a more information approach to service development.
  
• Autism research is very important to our community. Partnership working is essential. Invite everyone to join the partnership. Listen to adults with autism. Researchers sometimes are not told or see the bigger picture. Events like this can support researchers.
• There are projects happening or in development around some crucial aspects of ageing. On the negative side, once again I have seen that local authority commissioners do not want to engage in learning how to improve the services they are paid and tasked by law to provide. The few who attended were very impressive.
  

Cardiff Seminar

Support services and what they should do

• What do ‘support’ and ‘support service’ actually mean?
  
• How do we improve social services and access to independent advocacy?
  
• Self-advocacy - How to identify self-need systems  (coping strategies)
  
• What support is there for families?
  
• Support services are crucial – but what works or is effective?
  
• Does a universal design for (education, social services, infrastructure etc) increase or reduce costs?
  
• How does a diagnostic assessment help in the management and care of autistic children
  
• Can a service intervention package reduce the age of diagnosis in children with ASD
  
• How can services work best in a preventative capacity to prevent secondary problems?

Factors that affect life in adulthood

• What predicts ‘best outcome’ for children and adults?
  
• How do the lives of adults change over the years?
  
• What are the effects of autism in old age?  What is the long term effect of medication used to ‘manage autism’
  
• Are neurotypical outcome measures damaging to autistics?
  
• What research is needed to improve outcome measurement in children and adults? How do we develop measures to be fit for purpose?
  
• What are the key ‘inputs which influence and impact on best outcomes (e.g. family support, type of intervention)

Attitude change

• Should everyone learn to accept and embrace our unique differences?  Should we change, should they change?
  
• When will we have a change in attitude that autistic doesn’t always mean poor mental health?

Guidelines and policy

• Why research recommendations aren’t backed up in practical policies that work for autism families
  
• Whether the Autism Act in England or the Autism strategies in Wales or Scotland has made a difference to services
  
• Why the NICE guidelines make general comments about interventions

Mental health problems in ASD and ASD in those with mental health difficulties

• What are the autistic traits in people with autism
  
• What is the rate of mental health diagnosis in adults of different ages

Specific topics:

• women,
  
• relationships,
  
• sexuality
  
• research methods for a diverse population