Your Experiences of Accessing Neurodevelopmental Services

We heard:

• 63 (51%) responders have been referred to, accessed or tried to access Neurodevelopmental Services for themselves and 49 (40%) responders for their child.

• 86 responders were very dissatisfied with waiting times for an assessment with the Neurodevelopmental Service.

• 73 of responders told us they have had challenges in accessing GP services.

Respondents to our poll told us:

Waiting lists
“Waiting lists are so long and at the end of it, there is no real support available, apart from a leaflet.”
“The waiting times are too long and there is very little communication or updates to those who are waiting for assessment.”
“I have been on a waiting list for an adult Autism referral since December 2021.”

Cost
“I have needed to pay £3600 over the last 3 years to get a diagnosis for my daughter before she reaches 18 (13 when referred with 5 Yr CAMHS waiting list). ”

Appointments
"There is a real lack of knowledge, awareness and compassion in all health care services and the challenges for neurodiverse people accessing appointments, managing during
appointments.”
“When in hospital A&E my neurodiverse children are left for hours in the main waiting room, which is overstimulating and distressing. They are unable to vocalise how poorly they are, which often means it is guess work on my behalf.“

Next steps

As the public champion for local health and care services, Healthwatch East Sussex will continue to work in partnership with commissioners and providers to monitor the experiences of patients and the public in accessing health and care services locally and explore how ongoing improvements may be delivered.

We will also send it to East Sussex County Council, NHS Sussex, Healthwatch England and others to share this insight and encourage its incorporation into future initiatives.