Q. Any tips in getting involved in research?

A. Ben feels he is not qualified to give this advice! Very self-depreciating response 🙏

#BACCH

Q. Are there any key messages about service delivery for #BACCH
A. There is difficulty in trusting professionals and access to services - that is quite a challenging message for all of us

#BACCH

Q. Are there any specific mentions of barriers to/access to mental health services
A. Not currently, but there is definitely concern in responders about trusting in and feeling supported by the services once accessed

#BACCH

Q. Were any specific physical health needs identified?
A. We haven't yet got a set of specific conditions, but healthy living, weight management and dental care are a focus of responders. Sexual and reproductive health also raised

#BACCH

Q. 25% had self-reported LD. Do you have any data to corroborate what percentage of responders have a formal diagnosis?

A. Responses are anonymous, so this is not possible

The only thing they know is if a person is a care experienced person, a health professional or a carer

#BACCH

Q. How did you explore the LGBT experiences and shortfalls in support?

A. This wasn't targeted specifically but it has already emerged through the surveys as a theme and they hope to report on more

#BACCH

Next steps

Continue analysis

Targeted interviews with asylum seekers and refugees to ensure their voice not lost

@laurenfern.bsky.social did the art (I hope is right Blueskyer!

@jameslindalliance.bsky.social #BACCH

Transitions and changes in support:

- leaving care
- age thresholds
- placement transitions
- service transition
- transition planning
- Abrupt withdrawal of support

#BACCH

Early themes are emerging

Access to healthcare issues
- navigation
- appointment attendance
- experience of healthcare
- continuity
- trust

@jameslindalliance.bsky.social @commchildhealth.bsky.social #BACCH

Survey 1:
3 questions for professionals
4 for those with lived experience

276 responses (whole UK)

Analysis is ongoing

#BACCH

There is little evidence about how we can improve outcomes for care experienced children and young people

They are advocating for research here

It is funded by #BACCH, via a single anonymous donation ❤️

The James Lind Alliance was set up in 2004 and is coordinated by the NIHR

It brings stakeholders together to prioritise priority setting

They rank top 10 uncertainties in knowledge and this helps target funding

#BACCH

Next: Dr Benjamin Holter - James Lind Alliance priority setting for children and young people who are care experienced

#BACCH @commchildhealth.bsky.social @jameslindalliance.bsky.social

Q. Would you consider looking at papers not written in English
A. We acknowledge that was a limitation of the study - ideally yes, but not always feasible

#BACCH @commchildhealth.bsky.social

Navigating clinical services - factors:
Language barriers
Parental advocacy
Culturally competent providers and tools
Active listening

#BACCH #autism @commchildhealth.bsky.social

Navigating informal support - factors:

Peer support
Wider social networks

Processing - factors:
Beliefs about consequences of #autism
Partnership with co-parent (e.g. aligned/not aligned views)
Role of faith

#BACCH

They looked at a shedload of international papers for qualitative work

Recognising support needs - factors:

Differences in awareness of #autism
Advice from schools/families/friends
Ease of access to info

#BACCH

Next: Global parental perspectives to seeking a diagnosis of autism and implications for practice in a multicultural UK - Shriya Vishwanathan

There is inequity in clinical services and autism research

#BACCH #autism @commchildhealth.bsky.social

Q. Where were the patients diagnosed?
A. A mix - some in the community, some in the National Centre in Surrey

#FASD #BACCH @nationalfasd.bsky.social @salfordfasd.bsky.social @commchildhealth.bsky.social

Themes (5)

Community support and solidarity was important

Unique strengths were highlighted

Cautious optimism about research in UK @salfordfasd.bsky.social #FASD #bacch @commchildhealth.bsky.social @nationalfasd.bsky.social