It’s not possible, as far as I am aware as to how to do an accurate scream in text form so can you, the reader, insert a scream of your choice in this box please? [ …….. ]
I was just earlier in a very long meeting with social services and health, duration of some 2 and a half hours, and it was predictably a meeting to arrange a meeting.
We have moved into a different spectrum now of social worker, now we have 4 layers of management turning up to meetings, heaven only knows how much money is wasted by this amount of staffing but I should think it were substantial.
Much of what was discussed were items already raised and not acted upon in previous meetings.
At this point I acknowledge just how dull this may seem to anyone not fully aware of our family situation and the inner working of social services and health … I shall try to elaborate as I go along.
To place a summary we can say this:
Social Services agreed over a year ago that we are entitled to 70 nights of respite in a residential short term centre per annum.
This conclusion was reached virtue of a very badly done carer’s assessment and an assessment for Jermaine but mainly the latter. We have just in the passed month submitted a revised and far more comprehensive carers assessment which has highlighted far more need than the original so we can safely say that the figure of 70 nights should be seen as a starting point and not a definitive to respite requirement.
As of this day we still have 42 nights of that allocation unassigned and unlikely to be assigned because Jermaine has a need for near 24 hour nursing care and no establishment within social care has nursing care provision. The PCT (Primary Care Trust) will no longer provide a district nursing service as their nurses have refused to work with Jermaine because of his very difficult behaviour.
Health have assessed Jermaine as meeting their criteria but can realistically only offer one week per month running Monday to Monday and that week would be a week of their choosing unless adjustments can be made which cannot be guaranteed and cannot be applied for more than 3 months in advance. They claim to have no obligation toward the family (carers) at all and only meet the needs of the client. This does not excuse social services from their obligation to the carers but this fact seems to be continually overlooked. I am looking into their legal obligations but suspect they have none and these will transpire to be just guidelines.
Just a couple of hours ago I was informed that Health has agreed to take Jermaine into one of their assessment centres in Rushden for a period of at least 4 weeks but possibly longer. It would appear they can keep him as long as they feel there is a requirement to complete their assessment.
The main issue here is, and I acknowledge this needs to be done at some point, if he is in there for more than 28 days then the benefits we receive for him cease. If the benefits stop, in theory I need to sign on as able to work which is, in reality, a lie as I need to be home for when he returns again. But during that time all benefits get screwed up and we will have to survive on a very small income until it balances up again. There is a solution, I could transfer my claim for Carers Allowance from Jermaine to Zoey, and this would appear to be reasonably simple using a boring white ‘mini form’ to change names and it could all be done within a week. True, the income support side still need sorting but at least it is they that would owe me money, not the other way around.
My head is currently spinning. In a best case scenario we get a break from Jermaine for 4 weeks and lose no money and hopefully something is in place after that to prop up respite provision. I feel that is overly optimistic but we stupidly live in hope!
