“More than 1 person on the Journey”: A Comparison of carers needs for service users cared for both in and out of area

Background

Throughout the course of the past 6 years the Mental Health Learning Disabilities (MHLD) Placement Coordinator for the South London and Maudsley NHS Foundation Trust has been monitoring, reviewing and progressing the care of service users with forensic and complex needs in placements out of area. The placements are geographically disparate and range from the north to the south of England and to Wales, the variety of settings range from specialist community placements to hospital inpatient services across varying levels of security.

The OOA service has made a number of improvements in this time towards meaningful carer engagement however there is still a long way to go to achieve full and meaningful engagement across the whole of the carer group. From experience many carers have reported to feel “out of sight and out of mind” and are often isolated and left out of visits and contact.

Carer Events

A series of carer events were held to:

Engage with carers

Look at the needs of this group

To see what could be done to promote more meaningful engagement across the whole group

Compare the needs of both the in and out of area groups and to see if they differed.

To see what was general to all groups and therefore could help to inform the local and national agenda.

The events consisted of focus groups and presentations and was held over 2 with invites issued to carers known to MHLD teams, community social care teams and charitable organisations from the 4 boroughs of the Trust.  The event also invited other key carer.

Summary and Conclusions

From the consultation we found high levels of unmet need in a number of domains. These included; accessing information, being valued as a contributor by services, significant day to day challenges e.g. financing appointment, maintaining work/life balance, lack of formal support structures and lack of meaningful involvement. We found more similarities than differences between the issues faced by OOA and non-OOA carers. Nationally carer legislation applies to all  but does not recognise clear differences in the challenges faced by carers such as sourcing funds to assist with visiting service uses in their out of area placements.

The project cannot deliver on everything on the carers’ wish list however; it can liaise with agencies, provide feedback and make recommendations in order to enable carers to care.

The Authors would like to thank the Maudsley Charitable Trust whose help and finance made this consultation possible. These findings will be disseminated to a wider audience via a specialist mental health journal which have commissioned the write up of this project: Emery, H, Jones, B and Chaplin E (submitted 2012) “More than 1 person on the Journey”: A Comparison of carers needs for service users cared for both in and out of area, Advances in Mental Health in Intellectual Disability.

 “Family carers of people with learning disabilities have usually been carers for the lifetime of the person they care for. These carers are often described as having a lifetime experience of caring. This may mean they have been caring for 30, 40, 50 or more years. They have been through lots of different experiences as carers and had to cope with many changes.” 1

“Caring for someone with a learning disability is from day 1 a whole life of caring”Carer’s view expressed during a focus group 2012.
 
Report here: carer report for trustees final
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