In 2024, Youth Out Loud! surveyed young Disabled people about their experiences of accessing services and support. Feedback was generally positive, with most respondents scoring access to services as good or OK. The positive feedback from young Disabled people centred around how medical professionals treated them and how they, and their families were spoken to by staff.

Youth Out Loud! heard that the accessibility of facilities was mixed, with some services having accessible buildings but not appointment rooms and some stairlifts or automatic doors being out of order. The uncertainty about which facilities were accessible, particularly if there would be accessible toilets was highlighted as a barrier to engaging socially.

“I have been to different hospitals since diagnosis… It feels like I start again each time and doctors have not looked at my notes”

Seeking a diagnosis, which can be a daunting and drawn out process for young people and their families when they are looking for support, played a big role in the experiences shared. For those with a physical disability, or multiple health conditions, seeing different doctors and having to retell their story was exhausting.

For those with a learning disability and/or autism, receiving a diagnosis helped them to understand themselves. Adjusting to their new sense of self in their social environments and the expectations of other people appeared to be a big part of the young people’s experiences. At appointments it was suggested that other aspects of the young people’s health were sometimes dismissed after a diagnosis, with professionals becoming overly focused on one aspect of their disability or condition.

“For me my diagnosis is a really key part of who I am.”

“Part of having a disability, also involves a lot of people assuming you can’t do things. So socially someone might decide you can’t go to a certain venue or do a certain thing [and] stop inviting you. I just want to let people know, we do want to be invited even if we can’t do it, we want to be invited.”

Youth Out Loud! noted that lots of young people accessed NHS services with their parents and family members. With this in mind, the group reached out to the parents and families of young Disabled people to interview them about their experiences managing the young people’s care. Their testimony was recorded and is available to listen to as a Youth Out Loud! Talks podcast series, ‘Care access issues for young Disabled people‘.

These conversations with the parents and families of young Disabled people revealed that the burden of access issues were felt by them as they managed the administration of and travel to appointments for the young people. For young people, their experiences are contained to the appointments and settings, how they are treated by professionals and staff, how easy it was to get around the building or be examined. While the problems that are common for many NHS patients – navigating NHS administration, organising appointments and fitting them around busy lives and other responsibilities, and arranging transport – were felt by the parents.

“I had to keep pushing for my daughters health needs to be taken seriously and for her to be referred to the hospital. Took about a year to get the shared care agreement in place for Melatonin so was without vital medication while they argued who was responsible”

Parents valued the role of support workers and expressed a need for more support while recognising the challenges of recruiting and retaining staff in this industry. Interviewees shared that they felt the roles of support workers were very demanding, and low-pay was repeatedly highlighted as a barrier to the availability of skilled workers.

“More and more and more is foisted onto the support worker without raising their kudos in the eyes of society, without raising their pay and without acknowledging their professionalism in their own right.”

Youth Out Loud! reviewed the findings from the survey and interviews and developed a series of recommendations to address the concerns raised:

Recommendations for Trusts, local authorities and decision makers:

• Prioritise consistency in patient care so that patients are not required to repeat themselves to multiple professionals
• Consider approaches to employing and retaining more carers in the borough
• Standardise the age that services changes from children’s to adults and support patients through this change.
• Promote information around accessible facilities and changing places toilets
• Ensure lifts are fixed quickly and that there are policies in place for repairs to ensure people can access the facilities they want to access
• Consider temporary blue badges for people with intermittent disabilities or who are using a wheelchair while recovering from surgery
• Deliver post-op wheelchairs to hospitals so that they can be easily collected

Recommendations for professionals:

• Communicate with young people, parents and carers about the length and steps of diagnostic processes.
• Encourage people who think they or their child might have a disability to seek support and a diagnosis.
• Consider a patients’ entire experience rather than focusing on one aspect of their disability.
• Talk directly to the young person, not just their parent or carer.

Additional recommendations:

• More support and flexibility from teachers and managers when a young person needs to take time off school or work to see a doctor