National Debate - Direct Payments & Continuing Health Care

Hi everyone,

I'd like to start a debate and seek advice on the issue of Direct Payments and Continuing Health Care as although raised locally is a national issue. This relates to cases where family members care for their relatives and due to their health circumstances changing the person in receipt of care moves to CHC criteria and then Direct Payments cease. The concern is that this does not promote the person in receipt of care/treatment or their carer with any choice, control, dignity and respect - particularly for an informal caring relationship that now requires formalisation for care that has been provided for a number of years and the legal requirements of becoming an employee/training.

To help explain this a little further I've provided 2 case studies.... the families in both these circumstances have been quite distressed and upset about this situation. The issue in case study 1 was not helped as the circumstances changed to become End of Life Care and the Mum has since died - the stress this situation caused the family in the months leading to the end was really not acceptable.

Case Study 1
XX was caring for her Mum who was paralysed following a series of strokes and also blind. XX and her sister YY each got Direct Payments for 15.25 hours per week. Mum had deteriorated in the past 6 months and required a CHC assessment. XX was advised that she was no longer eligible to receive Direct Payments and that a care provider would provide Mum's care as CHC was required. XX wanted to continue to care for her Mum but as she had given up her full-time employment to care for her Mum she could not manage without the Direct Payment funding. The only way XX could continue to provide care for her Mum and be paid was if she registered with a Care Agency, be CRB checked and undertook various training courses to prove she could care for her Mum e.g. moving and handling, health & safety etc. A neighbouring Local Authority has similar cases whereby the CHC is paid from the NHS to Social Services who then pay the carer - therefore there are some discrepancies on how CHC and Direct Payments are applied.

Case Study 2
This lady had nursing needs due to mental health issues and a rectal prolapse due to these circumstances the Mum only wanted her daughter to care for her who was willing to do this. Continuing Health Care was granted, the carer continues to be paid via Direct Payments until she is employed by an agency as a carer (but she would only be expected to look after her mother) who CHC can pay.

From discussions with colleagues, I am confident that these cases will not be stand-alone and that other localities will have similar cases. Whilst I understand that there are quite strong legal limitations on the usage of CHC funding and Direct Payments I'd appreciate some national advice on this issue and hope that others will share similar issues to progress further.
Thanks,
Tracy