‘You Said, We Did’ – July 2025

Our activity in July 2025 included:

You Said

An individual told us they felt their communication needs, relating to their autism, were not being understood, considered or respected by the professionals responsible for their cancer care. 

We did

We shared the NHS Accessible Information Standard which outlines how services should communicate, resources from Macmillan about neurodiversity and cancer support, and signposted them to Patient Advice and Liaison Services (PALS).

You Said

We heard from an individual experiencing an issue with pre-payment arrangements for their ESCC funded carers. The caller was unsure how to request an advocate after a recent change of provider. 

We did

We provided the contact details for South West Advocacy Network (SWAN) who now provide a range of advocacy services to residents of East Sussex accessing and using Adult Social Care. 

You Said

An enquirer reached out to us for information about getting a learning disability diagnosis in adulthood and access to learning disability support services in East Sussex. 

We did

We shared resources from Sense advising on initial appointments with their GP. We also shared the details of East Sussex Learning Disability Team and information about Mencap’s Learning Disability Helpline for further assistance if required. 

You Said

An individual contacted us for information and help following their relative’s dementia diagnosis. They were unsure about the patient pathway, treatment options available, and how to access support.

We did

We provided information from the NHS on What to do if you've just been diagnosed with dementia  and signposting to Alzheimer's Research UK as well as the Alzheimer's Society and Dementia UK Admiral Nurse helplines who can support with specific queries and next steps.