27th Day of Lent: Going without hope of genuine consultation and influence

Metz Der Tod Rahels

Rachel writes:

“Carers once believed that Norfolk & Suffolk NHS Foundation Trust (NSFT) listened to the views of people with mental health problems and their carers. Currently, people are unable to understand why NSFT’s Carer and Service User Councils bar attendance from people who use mental health services and their carers. This exclusive policy is bizarre!

The new framework of carer and service user involvement consists of seven locality groups. These are supposed to be chaired by people who use services and/or carers and tasked with communicating concerns and suggestions to the ‘new’ Service Users and Carers Councils. The majority of these groups have not even elected a chair after nearly one year of operation. Locality groups are very poorly attended and are not representing the views of those who rely on mental health services at a critical time when services are being slashed and dismantled. Presently, NSFT’s website does not have information or minutes of the meetings that are taking place.

A separate, ‘overarching’ Trust Service User/Carer Development Group has been formed to decide strategies without any service user or carer representatives.  Who is accountable for what – and to whom – is not clear when once there was a clear line of communication between those who need mental health services and the Trust. I am told that only one carer and three people who use mental health services attended the last Norwich City locality meeting. This hardly constitutes representative involvement for probably the largest concentration of people who rely on mental health services in the Trust.

People with mental health issues living in the community will be seeing their care co-ordinators less regularly. Those in a stable condition will have their medication and Care Plan reviewed up to twice a year. Apparently, visits from clinicians will be available only at times of crisis. Contact with carers will be minimal.There will be a great deal more responsibility put on family carers. Carers of people with complex, enduring mental health conditions are often on 24 hour call, even when we are sick or on holiday. Carers will need more support as community services are reaching the point of crisis management.

The questions that need to be asked are:

How is the Trust responding to carers’ needs?

Are locality groups in their present form an effective interface between users and providers?

Why are NSFT’s Service User and Carers Councils and the Trust Service User/Carer Development Group not open to service users and carers?

Why have NSFT’s service users and carers been excluded from vital Service Governance meetings when they used to be welcomed?

Finally, I have no confidence that the views of stakeholders are adequately and genuinely represented within the Trust’s new Service User/Carer framework. I have lost hope that the Trust will consider the needs of carers and their caring role.”

3 thoughts on “27th Day of Lent: Going without hope of genuine consultation and influence”

  1. found this really interesting as i am currently waiting for a response from NSFT regarding this very issue…it is like trying to get blood out of a stone.  My request for copies of minutes has not yet been actioned, I wonder if it will be!!

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