Breaking down barriers to healthcare – listen to Contact’s latest podcast episode
5 mins read
Friday 24 October 2025
Neurodivergent and disabled young people and their families from underrepresented communities have less access to healthcare services.
They have poorer health and life expectancy as a result, and many of these young people and families are not involved in health care decision making and are less heard within research.
Explore this topic in our latest podcast episode
In our latest podcast episode, we speak to Mary Mulvey Oates, Contact’s Manager for Early Years Participation and Insights. Mary co-led an eighteen month research project to explore what can be done to improve access to healthcare for these communities.
We are also joined by Donna Phipps, Chair of the Liverpool Parents and Carers Forum (LivPac), and one of the parent carers involved in the research. Donna tells us about her lived experience as a parent of a neurodivergent young man, her work to ensure local health services respond to families’ needs, and offers some practical advice for parents.
Listen to the full episode of The Helpful Podcast for Families of Disabled Children on your preferred podcast platform, or you can watch it on our YouTube channel.
Research findings
Mary told us that the research findings were powerful and, at times, hard to hear. Many families said accessing healthcare was stressful and sometimes even traumatic. Parents spoke of difficulties in:
- Booking appointments.
- Communicating with professionals.
- Feeling judged or discriminated against.
- Repeatedly having to retell their stories.
Some children and young people faced overwhelming hospital environments or physical access barriers. For example, one wheelchair user had to be carried into a GP surgery because there was no ramp.
Mary explained how cultural misunderstandings and lack of reasonable adjustments often compounded these barriers.
“Interacting with services was sometimes described as causing trauma”
There were also positive examples of professionals who listened, adapted, and created calm, supportive spaces where families felt seen and heard.
Read more about the research project including a summary of the findings for all the community groups included in the research, including young people with additional needs, and parents who are themselves disabled or neurodivergent.
Tips for parents accessing healthcare
As Chair of the Liverpool Parents and Carers Forum, Donna has gained valuable insight into the challenges families face when accessing healthcare. As a parent carer of a young person, she combines this understanding with her personal experience to offer advice to any parents listening who face similar issues.
She told us:
- Share your needs. Let professionals know if you or your child are neurodivergent, disabled, or need reasonable adjustments.
- Find out what’s available. You can ask for interpreters or sensory adjustments, and check if there is a Learning Disability (LD) Nurse available.
- Prepare in advance. Write down your key questions and bring all relevant paperwork to appointments.
- Take care of yourself. Think about what you need to make the appointment go well, not just your child.
- Ask for clarity. If you don’t understand something, ask professionals to explain or repeat it.
- Find your local Parent Carer Forum. They can help you connect with others, share experiences, and raise issues collectively.
- Use community support. Follow your local Parent Carer Forum or Contact’s Facebook group for advice and updates.
Ways healthcare professionals can better support families
In the episode, we asked Mary and Donna what healthcare professionals can do to help reduce barriers for the underrepresented communities featured in the research. Mary acknowledged that:
“Often we noted that systems were falling short and that really kind, compassionate staff were having to route around the systems that created barriers”
But if possible, practitioners can strive to do the following where possible:
- Start with compassion. Small acts of kindness and humanity make a big difference to anxious families.
- Offer reasonable adjustments. Ask, “What would help make this appointment go well for you and your child?”
- Read the notes. Avoid making families retell their story repeatedly – it can be exhausting and retraumatising.
- Use clear communication. Avoid jargon and acronyms – use simple language and visuals where possible.
- Provide interpreters. Don’t rely on family members to translate sensitive medical information.
- Check accessibility. Ensure physical access needs are met – ramps, quiet spaces, sensory rooms.
- Work with community partners. Collaborate with trusted local organisations who know and support these families.
At Contact, we believe every family deserves to be heard and supported when it comes to their child’s healthcare. Through projects like Access to Healthcare North West and our By Your Side hospital support service, we’re working to amplify parent voices, challenge inequalities, and help shape services that truly meet families’ needs.
Please note, the views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Where can I listen?
You can subscribe to our podcast on your platform of choice:
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Or visit our Acast podcast homepage.
You can also find our podcast episodes on our Youtube channel, or listen below.
The project featured in the episode was grant-funded by the National Institute for Health and Care Research. Based in the North West of England, it was collaboratively developed between Contact, Alder Hey Children’s NHS Trust, Edge Hill University and the North West National Network of Parent Carer Forums (NW NNPCF).
