Wednesday, 25 July 2012

Sometimes, you have no choice but to give up.

Just before I begin this blog post I want to say that I am not going to name names, because actually that would make no difference anyway, and would open me up to possible legal stuff going on.  I will use the abbreviation CIN for 'Child in Need Team' and DCT for 'Disabled Children's Team', SW for Social Worker and SS for Social Services.  Mainly because I am just lazy!

So.....Rowan went into GOSH for his admission and his liver biopsy was done.  We are STILL waiting for the results however.  3 weeks later, over 10 days after we were told the results would be in.  I have had contact with the team, and they are constantly checking for results but so far nothing.  Is that a good thing or a bad thing?  Some people say no new is good news, but what actually would qualify as 'good news' and 'bad news'.  Good news is what?  Things come back normal and we are no closer to a diagnosis, no closer to finding out what's wrong, no closer to finding a better treatment plan?  Doesn't really sound like good news does it.  Is getting an answer good news?  What if that answer is a terminal answer, what if that answer means that nothing can be fixed?  What if the results come back as showing something that will require an intense treatment plan that requires lots of hospitalisation and still no 'cure' (we are fully aware that there is probably no cure for Rowan especially as he still has no diagnosis).  Is that good news?  Or is that bad news?  I guess there is no such thing as 'good news' and 'bad news' at this stage, it's just 'news'.

So whilst dealing with all this, I had news that the DCT was closing our case for Rowan.  Basically, since Rowan has been born, we have been escalating up the 'social work team' ladder.  We have been stuck amongst all the changes to the teams, so in the last 4 years (from when I fell pregnant with Rowan) we have been under 4 different 'teams' with 7 different social workers.  Each team deeming us 'too complex' and moving us up the ladder.  So.....last year after the child protection conference (which SS initiated) we ended up with two 'teams'.  The DCT for Rowan (as he is a disabled child) and the CIN team for Katrina, Cameron and Ayden as they are deemed 'Children in Need' with having Rowan as their brother, their own needs, and an 'unstable' mother.  The DCT funded a childminder for the older 3 children on a Thursday as an assessment they did said that we would hugely benefit from a 'break' a 'day to ourselves' seen as our family is so full on all the time.  A day that I didn't have to rush to do the school run as our childminder picks them up from home and drops them off at 6pm.  They also sorted out a play scheme for us last summer holidays so the older 2 children went for a week each, and Ayden went to a childminder too.  They used to organise taxis for school runs when one or the other of us was away, I can't organise it myself, because of their ages, they need to make sure the driver is all checked, and therefore another organisation need to book it (even though it's the same company we always use). 

So....Rowan has his nursing care package which is funded 80% by health (so the NHS) and 20% by social care (SS).  Then the childminder started to be paid by the CIN team as it was for the older children.  SS made promises that they would input support so that I could do my DBT course as safely as possible.  So they'd put extra childcare in.  I was feeling fairly......supported?  OK so I'm not a huge fan of social workers, well, my social workers.  I hold a grudge because of the child protection process, and the amount of times they've promised things and taken them back.  But I did kind of feel like we were getting somewhere.

On the Monday we were off to GOSH, I checked my emails on the way.  I had an e-mail from the DCT SW which basically said that they were closing the case.  Now,  I was somewhat shocked, but they tried assuring me it would all be ok, and they weren't closing the case, they were moving him to a more appropriate team, to be with the other children so we have one social worker, not two, it will be more co-ordinated.  My team went nuts.  There was no question time, no discussion opportunity they were just closing the case, end of story.  No room for movement at all.  I was not happy either.  They were trying to assure me that all would be ok again.  We wouldn't really notice any change, everything would carry on as it was.  I don't handle change very well, and was really worried.  Who was now paying Rowan's care package as it comes from the DCT budget.  No one would answer me from the DCT as the case was now closed.  So I started emailing the CIN SW to find out, again she was ignoring my questions.  The worst things you can do to me is lie, ignore me, or hide things from me. 

I repeatedly asked over the course of the week (while I was in GOSH) what was going on and if someone could explain to me what was happening to the promise of support and I heard nothing.  So instead of stressing over it, I concentrated on Rowan's admission and keeping my mind focused on what was happening at the time.  If you've ready any of my posts from that week, you will know that it was pretty chaotic. Due to the stress of the journey home, both for Rowan and I, and the change of going from hospital to home, it always takes a couple of days for everyone to settle back to reality.

The Saturday was filled with cleaning, washing, tidying etc.  And then Sunday was a PJ day.  At about 2pm I checked my emails, just expecting the usual junk mail, maybe someone tagged me in something on facebook, or some company offering me 99% off deals.  And there appeared an email from the CIN SW.  Yes it was a Sunday.  The email basically asked me if I could update her on an appointment I took Katrina to, as she was completing the core assessment on Katrina before they closed the case.  Erm......hold on......CLOSE THE CASE? So I emailed back, just clarifying what she was saying and yes, they were closing our case.  All 4 children's cases.  So all that 'we're transferring Rowan to a more suitable team' stuff was complete crap.  When I asked how long until the case was closed I was told 10 days.  We had a meeting between that Sunday and the following Thursday and she was going to say something then with her manager there.  So actually they were only going to give us 7 days notice.  Once again, no room for discussion nothing.  So, I had lots of questions.  Here were my questions with the answers I was given.....

1.  What is happening to Rowan's care package as SS are paying 20% of it, how can they be paying a package for a child who has no open SS case, and if that's the case, who will be reviewing the package?  (basically every 3 months two people come out to discuss the care packaged and decide if we need more, or less hours, and one person is from the NHS, and the other is a SW, as those are the two 'organisations' funding the package.)

Well, it's highly unusual, but someone, somewhere, somehow will be funding the package still.  Don't worry.  Oh and we have no idea who will be reviewing it, probably just any social worker.  (Going to make decisions based on a child they know NOTHING about......going to be interesting!)

2.  What is happening regarding the childminder we have for the older 3 children?

Well, that will no longer be funded as you will no longer have an open case to SS.....(This is where I lost my rag, and responded with 'How the hell can you assess that I need a childminder, fund it, then take it away with no warning, all along you've bleated on about how my children need stability, and then remove one of the most STABLE situations they have right now.  One adult they trust that's not a parent.  And what is meant to be happen now, I have made commitments (OU) based on that childminders support).....and that is was NEVER going to be long term (although we were also never told otherwise).  They said they were not saying that we did not need or benefit from a childminder, but they wouldn't be funding it.  So we need to fund it ourselves, and any extra childcare we need will have to be bought in by ourselves.

3.  Ok, so what if I can't afford the childminder, that you as a services assessed that I needed a year ago, and despite the fact that the situation has not changed, you now decide no longer needs to happen?

Um.....well......tough (Ok, maybe they didn't say the word 'tough' but that's what I heard).

4.  Why are you closing the case?  (Ok I guess most people would have this as question one, but I was MAD)

There are no child protection issues, the children are well looked after, there are no concerns about them, we are good parents.  Therefore we do not meet their criteria as they now only deal with children on a child protection plan, or children they are removing from their parents.  So.....if you are a good parent, sacrificing your own health, your own sanity, your own life, then you don't need (or deserve) any help looking after your children in order to be able to look after yourself a little bit.

5.  You say there have been big changes in our circumstances, can you name some?

Lots of things have changed.  (Like what?)  Lots of things (Such as?)

6.  We have a child in need plan, not all of the 'actions' on that plan have been completed, yet you are closing the case?  How?

All the actions are completed.  (So what about the ones about seeking help, for me to explain self harm to my children?)  There were no resources available, so there is nothing we can do.  (That's a rubbish excuse, that I have been fobbed off with for 6 years now, and you lot told me you would help me with it, and now it's not possible!?)

7.  So when do we actually lose the childminder?

Well we will pay her until the end of August.  Then it's up to you whether you continue to pay her or not.

8.  So, I assumed the help that was promised for me to do my DBT course is also revoked?

There were never any promises made.  (This is where my mental health worker chips in 'erm, yes you did, you asked hours, what the commitment was like, what CMHT (community mental health team) were asking for') and their response, was 'we understood the commitment, but we never said we would help with childcare.  There is nothing documented to say that we said we would help' (equally, when discussing the situation, not once did you say you were NOT going to help)

So, whilst all this discussion was going on, I started asking other questions, such as, what happens now then.  I had given up fighting.  What was the point? No one was listening to me.  No one was going to listen to me.  And I just started getting upset.  I worked my arse off of my kids.  I tried so hard to help myself, I agreed to therapy that I'd said no to for years, I started an OU course, and it feels like I have been penalised.  We were in a meeting with all these questions.  I started to raise my voice.  The SW told me she'd 'sort this' and 'phone them' and 'do this' and 'do that'.  I was seeing red.  So I told her to 'stop feeding the room bullshit, you are leaving in a week's time, these things have been outstanding for over a year and now magically you are going to solve all the problems in a week, bollocks'.  The SW manager pipes up, and tells me to calm down, and that SS closing is a good thing.  (Clearly I don't see it that way).  Basically at the end of the meeting it was agreed that we would step down to a team called the 'core offer team'.  They have service coordinators that help sort out messes likes ours.  We were under that team before, until we were moved to the DCT.  They are not social workers, but we felt so supported under them.  They do not have a budget though, so they can not pay for childcare.  I felt like I got the consolation prize.  But I had to admit defeat.  I wasn't going to win. 

My mental health worker tried.  He said things in that meeting that I really didn't want people to know.  And although I know some things are my fault, because, although I will sit here, on the Internet, and admit to the world that I see and hear things that aren't real, there are thing that I do not share with anyone, and only share with my mental health worker at a push.  I have real issues with trust, especially with professionals, and this is exactly why.  They make promises, then say they didn't make them at all.  Making me feel like I made it all up in my head.  I came out that meeting feeling awful.  Some of the way that I have been feeling recently was made perfectly clear, the amount of 'risk' I present to myself was also made clear, and yet, despite SS stating on numerous times that my 'mental health is just as important as the children's health' they basically told me at the meeting that they don't care.  My ever decreasing mental health state, has nothing to do with them, because they are children's services.  My mental health state is to be sorted by the community mental health team.  So all this rubbish that is told to families about 'working together' and 'looking at the whole family' is a load of rubbish.

Leaving that meeting with the consolation prize, I tried to move my focus to looking at the core offer team, and hoping they will be able to help me feel more secure.  A couple of days after the meeting, the SW emailed me again.  We do not fit the Core Offer Team criteria either.  They are refusing to offer us a service.  I felt like I'd been repeatedly kicked in the stomach.  I am trying to help my children as much as I can.  I do the work of several professionals, paid in love and smiles and cuddles by the children, and I do not deserve to have an identity of my own it would seem.  Basically my mental health worker told everyone in the room that I have a 'suicide plan, with intent'.  Now, it's not an attention seeking plea, it wasn't a 'last ditch attempt' to get them to keep the case open.  There are lots of the things going on for me that are causing huge problems for me.  I have had a really big downward spiral with my mood in the last few weeks.  And this whole situation made me feel completely worthless.  Like I meant nothing to anyone except my children.

So, where does that leave us now?  With a CAF.  Do I have any hope that this will work out OK in the end?  No.  Do I have any choice but to just let it happen?  No.  I had a CAF when I just had Katrina, single parent, mental health issue.  No physical health issues at all.  And there wasn't much that could be done for us then (before all the budget cuts).

Right now, I have given up fighting.  I have given up arguing with services over what I want and/or need for my children, and for me.  I have given up fighting to keep my mood stable.  It's through the floor and below.  I have given up fighting my way through each day.  I let chaos happen around me.  I don't chase things, I don't argue, I don't question things.  That requires energy that I just don't have.  Maybe not fighting, in time, will make things better.  If I'm not so hung up on being combative with everyone, maybe, even though nothing will be sorted, I won't be so stressed.  I attend appointments, but with no 'everything is ok' face.  I shrug like I can't be arsed, I am physically in the room, what more do they want?  Services are not there to help out struggling parents, who are saving the government thousands every year by doing the job of therapists, nurses, PAs, doctors, taxis, educators every single day, trying to enable our children to reach their full potential.  Don't ask for help if you need it.  The answer will be no anyway.

Since I originally type this out, my mood has further deteriorated.  I have shut down.  I don't want to be around people, I don't want to join in idle chit chat.  I do the bare minimum to get through the day.  Right now we are in limbo, no social work team, no caf, no core assessments completed.  No hope of Rowan starting nursery in September.  I don't want to reply to texts, or emails or phone calls.  I don't want to bring anyone else's mood down.  Like I said I do the bare minimum.  I had to take Rowan to the hospital today to get more antibiotic as the poor little dude is in pain constantly and is having issues with a recurring rash, and losing weight etc.  I don't want to be so miserable, but I can't change it, if I could I would.  I wouldn't even bite your head off if you insulted me or my children. 

It has also transpired, that this whole situation may have come about, because Rowan has no diagnosis, and therefore fits no box.  Therefore SS don't know what to do with us, what help we need, or where to send us for advice/support.  So they close the case because they have 1000s more that they do know what to do with.  Obviously that's not official, but it's the general feeling a lot of our team have, and a lot of people I have spoken to.

So for now, I am existing, not living.


  1. I wish I had the words to reassure you, or a magic wand to make it all better. I totally understand how you're feeling right now, and you're so much more honest than me about it, because when I have bad days and weeks I can't even blog about it, I just close down, like you are now. I wish I could say it will get better, when you're in such a shit situation how could it not? and yet without the support you deserve how can you have the time and space you need to recover. I really hope you can get some legal advice or some way to challenge them - I know you don't feel like doing it now but I can't see that they'll do anything without a boot up their collective arses. Thinking of you. Take the time you need and get what support you can, at least CMHT is standing up for you x x

  2. Claire I am so sorry to hear about all of this, the way you have been treated is horrendous. I don't understand why Rowan has been taken of the DCT - he is still a disabled child.

    A few other places you might be able to get help, when things have got better and you have some energy to face it: you could try the Citizen's Advice Bureau as they may be able to advise on what support you should have.

    Also, is there a children's hospice anywhere near you? Not that Rowan or any of your children are going to die or need a hospice in that sense (which is more like adult hospices) but children's hospices can often provide extra support for children with long-term medical conditions, children who have "life-limiting conditions" - I imagine Rowan's complex medical needs limit the quality of his life. A diagnosis is not necessarily required - I worked briefly in a children's hospice, and they supported a chld with no diagnosis.

    I'm glad your CMHT is on your side at least, and I really hope the rest of the services sort themselves out. Good luck, I'm thinking of you.