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Who Cares about Carers?

Sarah Kay by Sarah Kay Additional Needs

Sarah Kay

Sarah Kay

An honest (and hopefully positive!) chat through the rollercoaster journey we have found ourselves on; hopefully to raise awareness of HIE and supp...

Who cares about carers?

Now I don’t mean that in a flippant or sarcastic way, but the upcoming Carers Week has really got me thinking.

Before I had Heidi, when my knowledge of the special needs world was limited, my idea of a Carer was someone who popped in to check on, feed, and maybe dress an elderly person.

I always imagined that they were underpaid for the job that they did, but felt very grateful that there were people out there who could do that kind of thing, as I knew I couldn’t.

At least that’s what I thought!

Fast forward a few years and I am now classed, I guess, as a carer to Heidi, who has complex needs.

But I don’t see it like that. In my eyes, I am a mum to a little girl; I see my SN friends in the same way as my non-SN friends, being mums and dads to amazing kids.

Our roles though are considerably more that “just” being parents (as if that wasn’t enough on its own!).

We are advocates, physiotherapist, administers of medicines, dieticians, trained suction users, emergency trachi-change experts, play-mates, the list goes on.

Thankfully the UK government recognises this extra responsibility and offers a payment to (eligible) carers.

Now, my friends will be jealous when they find out how much it is… drum roll please… carers can claim £64.60 per week, as long as they can demonstrate they do at least 35 hours of care.

I’m no maths genius, but that hourly rate doesn’t equate to all that much, especially considering what’s involved in looking after these little beauties.

One thing to flag is that you can’t claim carers allowance if you earn more than £120 per week – because obviously then you would be far too rich and have so much money that you would end up spending it frivolously and living a life of luxury.

No risk of that happening to us as both Steve and I work.

We both used to be in fulltime employment, before Heidi, and now work part-time to share the care and responsibilities.

I know that we are lucky for now, and that things may change in the future – friends have had to give up work completely, reduce hours significantly, or make other sacrifices, without which family life would just not function.

After considerable challenges, we managed to secure a Personal Health Budget (PHB) so that we are able to employ additional carers.

Our allowance covers 2 night shifts per week and again, we are most grateful for this.

It seems to vary from region to region as to how many hours families are entitled to, but the general consensus seems to be “not enough”.

It’s not like we’re being greedy, but imagine having a new born by, who is up in the night, needing feeds, nappy changes, and cuddles.

Now imaging that going on for 3 years, and beyond, with additional needs. Not too much to ask for is it to have a little help?

When the help does come in the form of paid carers, then they have to be fully trained.

I get this, and I wouldn’t want to leave Heidi with anyone I didn’t believe to be fully competent.

But no-one trained me, no-one showed me how to lift her as she’s got bigger, and when I asked recently if we could have the same safe handling training that our paid carers have, I was told no.

It’s something that we’re still looking in to – children get bigger, and lifting them can put pressure on our backs and joints.

I worry that if I was injured, then who would be able to look after Heidi?

Caring for the carer is so important but often something that is just pushed down the extensive list of things to do.

I hope that one day soon the system will be reviewed to make it fairer, to offer more support, and to recognise what is actually involved in the role.

In the meantime though, I’d just like to do a big shout-out to all the carers.

From what I can see on the old Facebook and Instagram, there are people out there who are doing it way better than me…I’m just (as usual) winging it!


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