Achievements 2019/20

Supporting social care with new standards

Social care services are a vital lifeline for people using them, offering them the chance to live the best quality of life they possibly can. Many adults using social care also have complex health conditions and they and their relatives want to feel secure in the knowledge that they are getting the support they feel they need to achieve their health and wellbeing goals. Sharing information and having ‘joined up’ systems can help us to do that, and will support people to achieve their own personal ambitions. 

This year we began work on standards that determine what information needs to be shared so that people facing physical and mental health challenges can get the care and support to achieve the best possible quality of life. We started by working with key organisations across the UK who are already using digital information sharing on a smaller scale to make big improvements to care. These projects have since been developed into national standards that can be used anywhere within the UK. More than 1100 people have been involved in the project’s development, which includes 250 contributors to online workshops and more than 800 survey respondents.

In addition to holding group discussions with carers, people who use services and professionals, we also invited 20 people as regular users of social care to share information they felt was most important to them in order to support them in living their best life. Because of lockdown we took advantage of digital alternatives and asked people to make a video, audio diary or take part in a virtual interview. The people included individuals with learning disabilities, long-term conditions, those who had experienced homelessness and people currently living in care homes. In addition to information ‘about me’ the completed standards will cover health and social care information in care homes, information shared with local authorities, information shared following a referral from hospital for additional support and what needs to be shared from a care home in an emergency admission.  

The new suite of  social care standards will be published before the end of 2020, supporting better information sharing between social care and health. Once published, the standards will enable  information sharing within social care and with healthcare providers. While the standards we are developing focus primarily on supporting information exchanges between care homes, local authority and health services, we will also be looking into what work needs to be done around information sharing in domiciliary care in future.  

My eldest son Shane is 22. He’s loving and affectionate and enjoys gardening, baking, swimming and visiting museums.  Shane has cerebral palsy, a visual impairment and a severe learning difficulty. Over the years it has been difficult navigating through a system that is obsessed with labels. We have found that clinicians will record data that they find useful, and the social system will prioritise keeping someone safe, with little room for dreams and aspirations. 

But good care is not enough for me. It keeps us alive and safe, but improved care is where we are listened to, valued and understood. It means our goals and health ambitions are taken into account and support is offered to help us achieve them.

Sam Bergin- Goncalves

Citizen lead, PRSB