The current situation of the secondary mental health service - the professional providers of care, is that we have done all we can [ - that is, within the culture of professional care we presently hold, and the resources we have been given - ] so we will drop further care in your family lap where we can, discharge others where there is no family, to discharge/dump them into whatever 'iffy' domicile situation we can find, and let the continuing illness take them away from us, so that we can get on with the other priorities that are hitting us - until there is an acute breakdown of care which the public can see, when we will have to remove them for a while, let things settle down, and start again; they - the people who are going to continue to be vulnerable - do not have the insight to know how that usually turns out, and in any case, do not have the personal robustness to complain.
The only problem we will have is when they do something awful' as they breakdown again.

But ' they were not ill enough as we saw them' to forestall that outcome. [ and we had no beds ] Nobody reported to us enough observations to us: we had not left them that contact.

 

Cynical ?

Our area carer support worker manager, just before retiring 2007-8, after six years in post, put out a 'leaving summary conclusion ' from the 'word of mouth' experience of the Carer Support Workers [ CSW ] appraisal of how carers were managing now.
[ carers of family members wirth serious and enduring illness is the CSW remit - they were seeing 700 approx. families each year ]

The response from the CSW's, was that things were worse than they were when the CSW's started six years ago.
In many more families Carers are more burdened , more despondent, less helped, see less hope in their current situation , were more debilitated and near to despair, about the future.

A community mental health team on their 'rounds' checked out their current experience, questioned carers and saw the same worries.

Letters asking for Carer Enablement Grants expressed the same degree of burden; some heart-breaking.

I tried through a Carer LIT sub-committee of the local Trust to suggest the Healthcare Commission be invited - when they did their Mental Health Trust hospital service appraisal, to interview or distribute a questionnaire to a sample of these carers. It got interest but nothing followed.

I wrote to the Healthcare Commission suggesting the same thing; no response

[ June 2009 what happened - 2007 , the CSW manager replacement had other duties, added to her remit and left 2008, there was then no replacement appointed for eight months - a temporary replacement, well qualified, showed she could do the job and indeed improve it's work for carers in distress, but she was not appointed, the job description never settled, and the CSW workers in post, left wondering and bewildered, there future insecure, and knowing the support given by their current temporary manager, could only be ephemeral and lacking authority of a full time future.]

This is the National Standard Framework expectation for carers - the basis for the funding the Local Authority Social Services got from central government to provide Carer Support services around 2002
Go to the last paragraphs

Nobody wants to know about the services to continuing schizophrenia except when some tragedy reveals a failure in the ability of a current local service to deliver sufficient contact and care.

I tried to invite the local Primary Care Trust to do their own sampling , together with the local Mental Health Trust.; no response.

What can I do next to put the plight of family carers [ and landlords ] , and therefore also of the people they are caring for, before those who fund and provide supporting service.

I am attempting to persuade those staff, doing the local Carer Assessments, to put into that assessment, a review of what care breaks there had been, within the previous week - on the basis of the daily diary from that week - the local Carer Assessment inteviewers to put into their assessment something like " What 'breaks' from caring in the week did you get last week - if it was a typical one - say Monday am pm - tuesday am pm - etc etc .....no extra staff of course, but maye we will see some response.

How does one get the attention of the deaf - or rather those that hear, but do not stick it their memory and put it into some action desk !!??

Anybody got any ideas about how to catch the ear, and persuade the purchaser/providers ?? What's the pathway in the system ?

Are their any Charities - pressure groups - which have clout, and would use it to influence those who dispense funding ?

To this simple end.

Take a sample of those people who are providing domestic assistance to sufferers from residual schizophrenia which continues to need support; that is the community carers - families, landlords, supported housing. Ask them what 'breaks from being cared for, what breaks from caring, within the week' were present during the previous week.

Take the previous week if that was fairly typical

Put the question; what was the sufferer doing on Monday am/pm on Tuesday am/pm ... and so on through the week.

Or. maybe easier, during the week to come, note in a diary - each hour - or maybe just am/pm, what the sufferer is doing ; what time they are spending on their own, out of touch ; maybe what time they are with you during the day; do they eat with you.

Record the activities which gave carer/landlord/supported housing - a break away from caring to do something for themselves, and the sufferer with residual difficulty out of their illness, something they would come to want to do, meeting with people other than at the domicile, of interest, of training, of education, on a settled commitment, and in a regular way.

With this information, the facts can be laid out, so that funders and planners, can be asked to state publicly, whether this degeee of burden on patient and carer, is what they accept, or not.

P.S. ... Hey, I have it ! This the way forward , I think . Go on - open the door, go out and post.

---

Write to this new Care Quality Commission CQC

The new chief executive - Cynthia Bowers - of this new - part health commission - is bound to be ? open to suggestion after her experience in missing out over the Mid Staffs hospital disgrace - on her watch

Can we carers not all write and tell her that - as in Mid Staffs [ her predecessor - the HealthCare Commission - exposed appalling standards at Stafford hospital while she was responsible for supervising its performance ]

- it was the local family carers who noticed and were prepared to persist, and that led to exposing such failures - the consequences lie heavily upon the families.
and who will be prepared to stand up, report them, and continue to remind them.

 

Ask her to make sure the Healthcare part of her job - the visiting Inspectorate examination of Mental Health Trusts includes a questionnaire - interview - of the local family carers of those with serious and enduring mental illness - to discover what help they are getting from regular and reliable 'breaks within each week'

Go for it . Come out of hiding for Pete's sake. Work out a questionnaire. Then find and obtain somebody appropriate, able and funded to do it

The point - to Publish and be Damned !

When the facts are known, the thrust of the recent NICE update .... 4.6.9.2 Routinely record the daytime activities of people with schizophrenia in their care plans, including occupational outcomes .... will have a measurable presentable backing for a campaign.

PS 2. Gp practices are now mostly group practices: they will have twenty to thirty sufferers on their books - names and addresses known; some of them discharged from secondary care.
Those with carers should have them docketed on the card/ IT entry of the sufferer.
Why not a Practice survey led by the Gp's, people generally accepted as trustworthy with confidentiality.
Do the same survey - breaks in activities away from th domicile during the week ??

Or your local Carer Support workers get them-selves commissioned and funded by the local Primary Care Trust or anybody else