Sunday, 29 November 2015


I had an assessment by the Adult Social Care social worker last week. Despite my reservations, it seems to have been the right thing to do. We have been allocated a further eight hours per week funding for respite care and help with the house. We were both so relieved that B cried. We can use some of it for a carer to be with N so that we can do things with L; or for a carer to take me and L out (in lieu of me being unable to drive) or for someone to be with both children whilst B and I have a couple of hours to ourselves. It has come at a really good time, as L is clearly desperately needing one to one time.

In the meantime, the Continuing Health Care Panel meet on Tuesday and, please, please, please, with luck and, oooh, maybe, a modicum of organisation and even, god forbid, competence, Children's Social Care might have got their act together to get our case looked at for some overnight respite.

This is now becoming reasonably urgent as N's breathing is not what it could be. She had a Sleep Study last week, which picked up low oxygen levels a few times in the night and a general rise in CO2 as the night went on. This would account for the continuous waking. We have very mixed feelings about it. On the one hand, it's rubbish. She is being referred to Bristol to the respiratory people again, who may want further tests. On the other hand, it's bloody nice to be validated - we've both felt that the social work people have been implying that we are laying it on a bit thick with the amount she wakes up in the night - it's only really the hospice people, who have her overnight too, who have made supportive noises.

It's all a mess. The whole bloody thing is a mess. In addition, one of N's carers is leaving after Christmas. Our sparkling new Live In Carer (tm) is picking up the two nights a month that she was doing; but if the CHC Panel goes to plan on Tuesday, that still leaves us looking for people to fill in another six nights a month. I want to have a small team of people that N knows well who can provide enough flexibility to cover for illness and holidays between them. I think we are looking for three or four people - and now we only have two, one of whom can't do nights at all.

Plus, the rate we are getting from the council to pay carers is derisory - a lot of families are adding an additonal four pounds per hour to the rate themselves in order to ensure continuity of care. We might be able to use the help we get from the wonderful Team Nenna to do this - but currently that is still paying for the two overnights a month, because of the fuck ups getting the overnight care from the CHC people in place.

Last week I had three afternoons where I did nothing but lie in bed and fit and doze. L is being very difficult and we are finding it hard to work out what is 'normal' eight-year-old boundary pushing behaviour and what is a product of having a poorly sister and incapacitated mother. School are being brilliant and extremely supportive and we have lots of things in place. But keeping those strong boundaries in place for him all the time is exhausting for both of us.

This all sounds really bloody negative when I write it out. We are not moping around sobbing winsomely all the time, I promise, although I sometimes think that I do nothing but whine here any more. I look back at my earlier blog posts where I actually tried to make people laugh with my writing and I don't recognise that woman at all.

I *am* thankful for our life. I am thankful for my beautiful children and my incredible circle of friends and family (of choice and blood). I am thankful for where we live. I am thankful for the professionals that help us. I am thankful that I can read and look at pictures and drama and the countryside and see beauty in all those things.

It is just very hard to remember that sometimes.

Friday, 13 November 2015


We have been waiting since May for Barnardoes/Social Services to get their collective act together and find us the overnight care that we were promised in early May. The Continuing Healthcare Panel said we could have a sleep-in carer to do a 'waking night' for two nights a week. Barnardoes couldn't find anyone suitable, so at the end of August we all agreed that it would be best if they gave us the budget and we recruited someone ourselves. This then had to go back to the panel to be re-approved. It was too late for the paperwork to go in to the September panel - they meet once a month in the first week - and Social Services failed to get the paperwork in for both the October and November panels.

This was partly because the Social Worker who should have been dealing with it has gone off on long-term sick - practically Career Progression if you work in Social Care I think - and failed to write up the notes from the Annual Review meeting we had in the Summer Term with all of N's professionals, which was supposed to double as a Child In Need Review Meeting. They therefore had to arrange a repeat of the meeting, which took place last week.

This was quite good, in theory; because our situation has changed since the summer. Fits* etc.. And N is not coughing as easily as she was - her cough is quite weak. And she's not walking at all now - we are still waiting for Botox. B is still doing all the night waking because I am not really all that well. He is exhausted. We finally jumped and have recruited a Live In Carer** who is helping with Stuff generally. We are paying her out of various different pots of money for the different tasks that she is undertaking. If she is doing Caring stuff then we are paying her out of the Caring pot. If she is doing other stuff we are paying her out of other pots. Social Services seemed appalled at the concept in the meeting; but I really can't see why this is so difficult for them to understand, particularly since currently we are funding it all ourselves, with the help of the wonderful Team Nenna; but the shiny new Social Worker they trotted out at the review meeting last week seemed to get stuck on it. This is the person who came to chair the review without meeting any of the family, incidentally.

In summary, we are still waiting for the funding to come through. Everyone at the meeting agreed that the funding application should go through. We are now asking for two nights a week and for funding for a carer to take N for swimming/pool physio and to Colouring Club after school on a Monday with her friends.

Social Services also want me to have an assessment by Adult Social Care because they think that that might unlock some more funding for help with the things I am no longer able to do to parent effectively. Like drive. Or housework. Or lift stuff. There wasn't really any acknowledgement that the failure to put in care that they promised back in May has effectively broken my health. It's just another hoop to jump through and more people to add to the four dozen or so already involved.

I am really pissed off and disheartened by every single interaction we have with Children's Social Care. They leave me feeling judged and found wanting. And in actual fact, it is them that are failing to support us in caring effectively for N. They swan in, they pronounce loftily, and they swan out promising to help; and then you don't hear from them for six months until you are on your knees begging. At which point another shiny new person arrives, pretends to care about us, promises the earth and then fucks off again.

So there we are. I'm not on facebook so much at the moment - my head filled up with politics and I had to back off a bit as it was starting to come out of my ears. It might be a positive side effect of that that I need to blog more often than I have been doing.

I've got rid of loads of poultry and downsized the business by the way. I've been referred for CBT to try to help with the siezures and not stressing about stuff is apparently the way forward. So B is taking on most of the wrangling of Things. This is hard for both of us because I've been doing it for years and find it hard to let it go; and he finds it hard to do.

For today, that is all.

* Did I mention that I started having stress-related siezures back in August? I think I must have done. It seems a long time ago now. I've been checked out for all sorts of nasty things and basically it's stress. My brain is just unplugging for a bit becauses it can't deal with stuff. It happens when I get agitated (so a *lot* when I'm dealing with Social Services) and when I get tired (all the bloody time). I'm conscious and aware when they are going on and sometimes they last for up to ten or fifteen minutes and then I come out of it for a bit and they start again.
**Hint: if you are in the position where you are going to recruit a Live In Carer, they must NOT be described as an Au Pair even jokingly whilst you are searching for the right terminology, because Social Services flip out at the idea of funding an Au Pair. A Live In Carer is fine though.