In line with the aims of the NHS-Led Provider Collaborative programme, the North East and Cumbria Specialist Services Partnership (NE&C) Provider Collaborative is working to reduce reliance on inpatient care and invest any savings into alternative interventions that help young people stay well at home. The Provider Collaborative funds the Intensive Positive Behaviour Support (IPBS) team, which supports young people who display behaviour that challenges others and works closely with the young person and their family to help the young person live at home or in their community.

Working closely with families requires regular engagement with them to better understand the challenges they face, to provide support and to make sure the family, the young person and the IPBS team work together. To facilitate meaningful engagement, the Provider Collaborative used some of the savings to commission  third sector organisation Skills for People to provide a formal family support worker role on a pilot basis. This role provides direct and signposting support to families who are referred to the IPBS team.

Annie Carden, Family Support Worker says: “Families have expressed how helpful it is to have a worker with lived experience who understands the daily stresses that comes with living with a child with a disability and behavioural difficulties. They have appreciated the little things such as making a phone call to a provider, writing a letter of support for a housing application and just listening when things get overwhelming.”

The family support worker provides contact details of relevant organisations and services and also makes contact on a family’s behalf, if required. Specifically, the family support worker helps the team connect with, support and work with the young person’s family. They do this by building a relationship with the family and supporting the family member to express their concerns and wishes with the IPBS team. This helps to ensure the clinical team is meeting the needs of the young people they are supporting and the families are able to implement care plans. This role also signposts families to additional support that may be beyond the remit of the IPBS team but may have a positive impact on the young person’s wellbeing.

Garry Schulz, Programme Director, says: “I’m delighted that our status as an NHS-Led Provider Collaborative has enabled us to develop this innovative role and improve the support offered to families of young people with a learning disability and/or autism. The work of the Provider Collaborative has led to a reduced reliance on inpatient beds and, through the reduction in inpatient bed use, the savings we’re able to generate as a Provider Collaborative are available to us to reinvest into local, community-facing services. This has made it possible for us to test and evaluate new innovative approaches such as the family support worker role, building the evidence we need to hopefully secure on-going investment where these roles work well for our population.”

The value this role brings to local families and young people has been evidenced in a recent evaluation. Feedback from both families and clinicians who have worked with the family support worker has been very positive. Families have indicated that they have a much better awareness and understanding about the types of support available to them locally. Similarly, the IPBS team has reported how valuable this role has been in meeting the young person and parents’ needs to make sure there are no barriers to implementing or continuing with a care plan at home after the IPBS team’s involvement. Consequently, this may help them to continue to implement a care plan or at least need less consultation with intensive services in future, therefore reducing the likelihood of readmission for the young person. Furthermore, the IPBS team has been able to use this role to support the on-going evaluation of the IPBS team itself; to work with the families to understand and capture the impact of the clinical team’s intervention, and look for opportunities to improve the clinical service and pathway.