Q Exchange
Improving accessibility for autistic adults in primary and acute care
- Proposal
- 2020
Meet the team
Also:
- Dr Ian Ensum (Consultant Psychologist – Bristol Autism Spectrum Service)
- Jules Pflaum (Occupational Therapist – Bristol Autism Spectrum Service)
What is the positive change that has emerged through new collaborations or partnerships during Covid-19 that your project is going to embed?
Autistic people die on average 16 years earlier than the general population and are more likely to have diabetes, obesity, stroke, hypertension and Parkinson’s disease (Dern, 2015). Difficulties accessing timely, good quality healthcare is a significant factor in the increased morbidity and mortality seen in autistic people.
Healthcare inequalities have widened for autistic people during Covid-19, due to reduced access to health and care services (NAS, 2020). A priority in the Long Term Plan is to reduce health inequalities due to autism.
During Covid-19, we have had more engagement with GPs and acute Trusts around how to work effectively with autistic patients.
This has led to promising collaborative work between us as a specialist autism provider and colleagues in primary and acute care. We are collaborating with BNSSG CCG to maintain and build links with the Local Authority for broader reach and engagement.
What does your project aim to achieve?
The purpose of the project is to develop the clinical skills, environment and resources for staff in primary and acute health care settings, to improve the quality and accessibility of services for autistic people.
Skills: we will provide comprehensive, specialist training on autism awareness, reasonable adjustments and communication strategies to frontline staff.
Environment: we will collaborate with service providers and practice managers to explore how their environments can become genuinely autism-friendly.
Resources: The RCGPs have produced a toolkit on reducing health inequalities among autistic people, although uptake has been poor. A goal of this project is to embed these, along with novel resources we will create, into primary and acute healthcare systems.
The goal of this project is to reduce healthcare inequalities experienced by autistic people by preventing avoidable illness, increasing annual health checks, and improving engagement of autistic patients and carers with long-term management of health conditions.
How will the project be delivered?
• A project worker will proactively engage with identified surgeries and acute settings for 12 months to provide training and advice on autism, co-produced with an expert by experience, who will be involved throughout the project.
• The project worker will be the point of contact for any further liaison and training, so partner organisations have rapid access to the service. Following the end of the project, this role will be taken up by the wider team, to ensure it is sustainable.
• As a service we are fully engaged with the research community through involvement in multiple NIHR-funded research trials. We are therefore well-placed to utilise emerging evidence-based practice to inform this project.
• Rigorous QIA, EIA and DPIAs will be carried out to identify and mitigate any risks. We will establish a steering group with stakeholders, and experts by experience will be involved in co-production throughout.
How is your project going to share learning?
We will host online events throughout the project for colleagues in primary and secondary care, in addition to commissioners, researchers and service managers where people can learn, network and share good practice.
We will collaborate with colleagues in local Universities around developing a research design that will enable us to evaluate the impact of the project in terms of outcomes, quality improvements and service user/professionals’ satisfaction.
This data will be written up, submitted for publication and disseminated through relevant professional bodies and networks. We will also host an event for healthcare providers and commissioners to present the findings and maximise impact.
We will collaborate with the NHS England Autism Programme Team to exchange information and data. Similarly, we will engage with colleagues at the RCGPs, for guidance with dissemination. Finally, we aim to present the project at national and international conferences to share its findings with the research community.
How you can contribute
- Linking with others who are working in a similar area and could collaborate on this project.
- Constructive review during the planning and delivery of the project.
- Contributing examples of similar projects and outcomes.
Plan timeline
31 Mar 2021 | Identify surgeries and acute care settings |
---|---|
31 Mar 2021 | Recruit Project Worker. Establish steering group with Expert by Experience |
30 Apr 2021 | Train Project Worker, plan workshops and identify training resources |
31 May 2021 | Start workshops with GP surgeries and acute care settings |
31 May 2021 | Take baseline outcome measurements |
30 Jun 2021 | Establish training and liaison partnerships with surgeries and acute care |
30 Jun 2021 | Take mid-way outcome measurements |
31 Mar 2022 | Take final outcome measurements |
Comments
Peter Dudgeon 12 Oct 2020
Hi Rosi,
Myself and my colleague Emma Adams (Health Transformation Partnership) are supporting the Health Foundation this year by fostering conversations between Q members and encouraging collaboration. We were Exchange applicants last year, so we’re hoping that our experience can help others, as their ideas develop.
It struck me, reading through your idea, that you've given a great deal of thought to your ambitions and to how you wish to share learning.
I don't know if you are aware, but there is a idea called: 'Volatility, uncertainty, complexity & ambiguity + Quality Improvement + Plan Do Study Act' which seeks to engage with a GP practice, to identify a specific service pathway, to bring some consistency and certainty to that pathway. I wondered whether it might be worthwhile linking with Tom, the project lead, as accessibility of care for autistic adults might be a challenge they could address. I suggest this, not to say that the ideas might merge, but to suggest that they could perhaps complement one another.
If I can help you make further connections, of course I will, but in the meantime, I wish you the best of luck with your idea.
Pete
Rosi Shepherd 14 Oct 2020
Hi Peter,
Thanks for your suggestion of linking with Tom Rose's idea. Tom's plan to create visualisations of SOPS to ensure consistent pathways in GP surgeries does relate to our idea of improving accessibility for autistic adults in primary and acute care. Our team will make contact with Tom to learn more about his idea and consider collaborating.
Thanks for your good wishes and your idea of linking the two projects.
Rosi
Petra Bryan 7 Oct 2020
Hi - This is a great project to ensure the confidence and skills are developed. I wondered if you'd considered joint training between primary care and acute : so that this also builds awareness of the different challenges, support that people (patients) may need in either setting, and a by-product may be greater appreciation of joint working in this area?
Petra
Jules Pflaum 14 Oct 2020
Hi Petra, thanks for your suggestion.
It would be helpful to arrange joint training for primary and acute care settings, which may be easier to arrange now that we are working remotely. This may also help with ongoing joint working and peer learning as you say.
Thanks, Jules (I'm also affiliated with the 'Improving accessibility for autistic adults in primary and acute care' idea).
Rammya Mathew 22 Sep 2020
I think this is a great idea; one of the main barriers to doing this well in primary care is having the confidence, and I think that can only be attained through robust training. Toolkits are helpful but not enough on their own. Red Whale which is one of the big providers of primary care education do have some good CPD material on this topic so it might be worth trying to liaise with them.
Parts of this project may also align with the learning disabilities QI module that GP practices are being asked to partake in - from experience it's always good to try and align with incentives in the system, as practice staff often only have the time/ resource/ headspace for things they are required to do.
Rosi Shepherd 30 Sep 2020
Thanks Rammya, it is useful to think about incentives for GP staff to engage, given the pressure on their time and resources. It’s helpful to see how the learning disabilities module has been adopted in GP practices and to be realistic about the pressures on practice staff. As you say, toolkits should be supported by training to create sustainable change, otherwise staff may be aware of them but not have the confidence to use them.
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