Prioritise inequity of access to neurodevelopmental disorder services
Key messages
Getting help from health services for a child with a neurodevelopmental condition is not easy.
Ethnic minority families often face more barriers when seeking support:
1. There is a lack of understandable and culturally adapted information.
2. The support system is complex.
3. Communication with professionals can be difficult.
Service providers could provide more:
1. Understandable and culturally adapted information.
2. Community-based services that respect culture and beliefs.
3. Professional development including cultural competency.
To tackle inequality of access:
1. Design and deliver simpler, equitable pathways.
2. Improve culturally sensitive and accessible communication.
3. Implement mandatory cultural competency training.
4. Enable cross-sector delivery at system and place level.
5. Embed community engagement in commissioning.
All children deserve to thrive
Neurodevelopmental disorders can affect how a child thinks, learns, feels, or understands the world. Getting help for a child with a neurodevelopmen tal condition, such as autism (ASD) or attention deficit hyperactivity disorder (ADHD), is difficult. It is emotionally demanding and NHS systems are not easy to navigate.
Access to services is unequal. Evidence shows that ethnic minorities lose out the most. This means 1 in 10 children with a neurodevelopmental condition are underserved by the NHS. The cost of racism is extensive, as already highlighted by the Children’s Commissioner .
Children grow up fast. Early intervention supports children to thrive and costs the NHS less over their life course. Family life, school life, and future prospects are positively impacted.
NHS staff want to be able to provide better care. Let’s start by making changes on the ground.
What we know
Our research team wanted to understand more about this unequal access to NHS services. We worked with people with lived experience to plan our research.
We interviewed 42 caregivers.
Ethnicity:
The caregivers told us they face extra challenges when trying to get help.
Communication with professionals can be difficult. Some caregivers struggle to explain their worries. English is not always a first language.
At times, professionals may misunderstand concerns or not take them seriously.
Caregivers and children may feel ignored or dismissed.
We spoke with
A lack of clear information early on. Information received is hard to understand. It is hard to share with family members.
The support system is complex.
There are many steps, services, and long waiting times for all families.
Language barriers, cultural differences, and low trust can make this system even harder to use.
Signs of a condition can be missed, leading to delays in support.
Professionals identified four key barriers
1 Lack of understanding and awareness of neurodevelopmental disorders.
2 Stigma - Fear of judgement or blame can stop caregivers from asking for help.
3 Discrimination from family and community.
4 Understanding how and where to seek support.
What can help?
There are three steps in the process of seeking help:
Step 1: Awareness & Recognition
‘If you don’t know what you’re looking for, how are you going to find it?’
Caregiver
All three steps can be helped by:
Culturally tailored information that is understandable and easy to share. This helps families understand their child’s needs and where to get help.
“There needs to be more conversation within communities for people to understand.”
Professional
Step 2: Recognition transitions to concern
‘I kind of dismissed it, but I started noticing some signs which made me wonder. Like signs of something that was unusual, I just didn’t want to explore it.’
Caregiver
‘I had to really push the GP because he thought I didn’t know what I was talking about.’
Caregiver
Step 3: Seeking help from professionals
Community-based services that respect culture and beliefs. This improves access to support. Individuals can make a difference.
“We’re fed up because South Asian women are stereotyped in the health industry.”
Caregiver
Professional development including cultural competency.
Listening, explaining clearly, and working with families really help.
“Sometimes racism comes into how we look at children when they’re in the minority.”
Professional
Recommendations
Our research points to 5 clear recommendations for commissioners and service providers:
Design and deliver simpler, equitable pathways
Integrated Care Boards (ICBs) should ensure pathways are streamlined. Make them easy to navigate and reduce variation between providers.
Improve culturally sensitive and accessible communication
Providers need to work with partners to ensure communications meet local population needs. Consider language, culture, disability, and digital access.
Enable cross-sector delivery at system and place level
To support prevention, access, and continuity of care ICBs should resource and coordinate joint working (e.g. across NHS, local authority, primary care, and VCSE partners).
Take action
Implement mandatory cultural competency training
Mandate all commissioned providers to deliver high‑quality cultural competency training. Align training with workforce equality standards.
Embed community engagement in commissioning
Mandate meaningful, ongoing community engagement within service specifications, contracts, and performance monitoring.
Equitable Healthcare is a right for all.
Are your staff fully supporting families from ethnic minorities?
Our research can help influence change in the services you deliver. Contact us for more guidance. ? ? ?
Can your service work better with community partners to produce clear and culturally appropriate information?
How can you build more trust from ethnic minorities in your service?