The 2019 Neuro Key, Carers From Diverse Communities project has been delivered through:
- The Neuro Exchange Information Hub at the Bridge Care Centre, Middlesbrough
- Outreach through visiting peer support groups
- Liaison with three representatives of national Charities
- Liaison with staff from the Specialist Occupational Therapist Community Neurological Rehabilitation team.
The project aimed to analyse the barriers that stop carers from identifying themselves to mainstream services and to deliver outcomes for at least 23 carers through advocacy, information and support.
Recommendations:
- Value the caregiver contribution by;
- Recognising the impact of co-producing a care pathway to reduce stress and relationship breakdown.
- Reducing the focus on ‘client’ or ‘recipient of a service’ and be more approachable to sharing expertise and long term problem-solving.
- Have open and honest discussions to manage expectation and promote freedom of choice in decision making.
- Strengthen preventative models of care to address the level of unmet need for emotional or psychological support.
- Address the lack of continuity between services and personnel. There is widespread fragmentation of communication chains and thereby, relevant information becomes lost, homogenised and unsuitable or not timely.
- Construct transition pathways in the school leaving year to provide access to or signpost to mental health and peer support for both the parents and the young person when managing a range of neuro-development conditions such as Tourette’s, ASD, Sensory disorder or Foetal Alcohol Spectrum Disorder.
- Mitigate the gulf between rhetoric and reality. There is a widening gap between the bureaucracy of the commissioning specifications and lived experience which deeply impacts on caregivers, not only from their own perspective but managing the frustration of the person they care for.