Monday, 24 March 2014

Light at the end of the tunnel

Well, there is no denying it, these last few months have been incredibly difficult.  And although there are more challenging events coming up over the next few months, we can see a bit more clearly when and how life may settle down a little.

Jessica seems to be in a better place, health-wise. She has managed a couple of consecutive weeks at school (hooray!), and we managed (yet another) chest infection, but this time at home without needing to go into hospital. We have got the hang of the NG tube now, and can clearly see how it is making a really positive difference to both Jessica's life and the rest of the family's life. I will blog about this is in more detail another time. Jessica is having her tonsils removed soon, which should hopefully mean we don't need the night-time oxygen and oxygen monitoring, and shortly after that, she will be having a Gastrostomy which will replace the NG tube.

We are moving forward with the plans to adapt our house, and now have a bit more of an idea of how this will work. We are looking at ceiling hoists and through-floor lifts, as well as working out issues around the bathroom and access in and out of the house.  We will be receiving a Disabled Facility Grant (DFG) from Social Services, as well as contributing to the changes ourselves.

This process is supposed to be done in collaboration with the relevant team at Social Services, but I have to say, we have not had a great experience here (slight understatement). I don't think the "assistance" we have had could have been any more unhelpful, obstructive or less individualised if they had tried. This attitude has significantly increased the stress we have been under, and we have only been able to make progress with this process because we hired our own architect (something I would strongly recommend to anyone having issues with the DFG process) and pointed out to Social Services their various statutory duties to a disabled child (again, something I would recommend).

And the problems we have had have not even been just about money. We wanted to (and probably are going to) purchase a piece of equipment that meets Jessica's needs far more than the standardised, textbook adaptations that Social Services wanted to do, which would be far more appropriate to an elderly person after a stroke, rather than a 4 year old child. The piece of equipment was recommended to us by another OT who knows Jessica very well, so we are happy that it is suitable for Jessica, and it is actually cheaper than the plan from Social Services. However, they refused to even consider it, because "we've not done it before". It is crazy that in the current climate, huge amounts of money could be spent on things that don't even meet people's needs.

However, after a lot of arguing and presenting of our very good reasons for wanting to have this piece of equipment, and Social Services not being able to give any good reason as to why we shouldn't have it, they have finally agreed that we can go ahead.

Our other success has been to reinstate some respite care for Jessica, but again this has been a huge effort - fighting (begging?) Social Services for some help - after our previous arrangements became unsuitable for Jessica due to her increasing care needs.  We have only had 3 nights' respite since July 2013, and since December 2013, Jessica's care has become a lot more complex with the NG tube and night time oxygen. We have no-one else apart from me and my husband who can currently look after Jessica. Obviously her school can, but she has often been too unwell recently to go to school, and has missed much of the last few months' schooling. Caring for Jessica,  24/7 without any break in sight, as well as trying to keep on top of everything else going on, has been very difficult, and has taken its toll, both physically ( I am in constant pain from lifting Jessica) and mentally; I desperately need some regular breaks.

The support we have had from Social Services through this time has been shocking. I know there are financial pressures, but that really is no excuse for the rudeness, and blatantly uncaring attitude that we have witnessed and received over the last few months, as well as their attempts to clutch at any straw to avoid them having to meet even their most basic legal obligations towards support for a disabled child and her family. I can totally understand why people give up trying to get the input they need (and are entitled to) and succumb to despair.  It can be exhausting and draining.

But we have got there, and I am taking Jess to a place this afternoon that she can hopefully go to for some respite care. I have already looked around it, and met the staff, and I think it would really suit her and that she would really enjoy spending time there.

So yes, there is some light at the end of the tunnel, even though it seems very far away. It has been a difficult few months, and my advice to any other families out there is to keep fighting for what you need - nothing is going to be offered to you on  plate, even to the point of you very likely being given misleading information (or even completely inaccurate information regarding Social Services legal duties to you). Do your research, and stand your ground. It is your child and your family that you are fighting for. Although it is so, so exhausting, and it really shouldn't be so hard.

1 comment:

  1. Oh well done you for fighting Jessica's and your rights. I'm so sorry it has been such hard work. That makes my 8 weeks (and still ongoing) of battling to get my kitchen worktops and kitchen tap repaired under warranty seem piffling - and I get to sleep too. Hugs to you all, and congratulations for smashing through the imaginary red tape.
    Rosey x

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