Growing Older Planning Ahead - for adults with a learning disability

Healthwatch across the Tees Valley worked in partnership with North East Commissioning Support on behalf of the North East and North Cumbria Integrated Care Board (NENC ICB) to explore how support can be improved for family, carers, and older people with learning disability (aged 40+ to reflect the early onset of chronic health conditions such as dementia) when they can no longer stay in the family home.  They used a variety of research methods to reach 50 people.

This work has highlighted the challenges facing family, friends, carers and service users when looking to plan for future needs. This delicate and difficult conversation could feel better supported if clear transition pathways were communicated in a timely manner. 

There are areas of good practice that would be beneficial to learn from for the future planning and commissioning of service delivery. People told of how important it was to be able to remain within the local area,  so future commissioning should ensure that provision, wherever possible remains within the locality. 

Clear communication needs to be embedded within the transition process. This should form part of early discussions and continue with regular reviews to ensure that service users feel safe and happy and are able to access support while maintaining choice and control. 

From the intelligence gathered professionals said that service users may not feel prepared for the transition into supported living – it may be useful if day services could support service user in development in this area to further aid the ability of service users. 

The report has recommendations on communication, introductory visits, location,  reflection and review, transition and best practice.