Thursday, March 21

Rant

Today, I recieved a letter from one of the Health Visiting team. It requested arranging a home visit to "see how I was doing and if they could offer any support."

The letter infuriated me. 

It wasn't the offer of thinking about support but rather, the time that has elapsed since my Health Visitor has tried to make contact with us. The last time I saw her, I told her I was still really struggling with depression and anxiety and felt really isolated due to our (recurrent) hospital based experiences.

In that time, she has gone on maternity leave and evidently returned to work (ie. its been a while).

In that time, my daughter has recieved an official diagnosis for cerebral palsy. She has also gone from having recognised feeding problems to being entirely tube fed.

In that time we have had at least five admissions if not more to hospital, including one lasting nearly 3 weeks. This does not include planned surgery, a sleep study or sedated MRI. They will know all of this and above because the hospital sent letters for the health visiting team and my GP.

In that time, I had a minor breakdown and was signed off work for a bit. Before being made redundant anyway.

In that time, I inadvertantly stopped taking anti-depressants and am still standing. Just about.

In that time I am still a single parent with no local family, for what that is worth.

Call me needy or melodramatic, but surely at least some of that is worth a call to just say "by the way, how are you both doing?"? 

I know the reality is those who shout loudest get the most help, but sometimes you are exhausted fighting on behalf of your child for a whole different set of things to carry on fighting for yourself. 

Then, after a rather splashy, giggly bathtime I had a different thought.
Fuck it. 
It's been quite a year and we're still here. Still standing. Still smiling (most of the time). We have bad days. We have really crap days. But the good days outnumber the shit ones. I'm not the best mum, but I'm an alright one. Luckily for them, we haven't desperately needed extra support. Hands up, it would have been really nice, really reassuring, but we've done it without the health visiting team putting their oar in. We've had some support along the way from people who aren't employed to support us in that way, like off the community physio and my counsellor when I was still seeing her, as well as being blessed with a great family, friends and an outstanding network of fellow parents facing difficult challenges. 

On a more serious note, it does make me worry for families really desperate for support. I know times when I have asked before and they simply didn't know what to suggest so didn't suggest anything. Sometimes when they just didn't answer and sometimes when they said "I don't know" and didn't do anything further. I've been lucky to always have other people around who knew an answer or at least a suggestion to help. But some families won't have that, especially if at the beginning of something difficult. I don't doubt that there are many exemplary health visitors out there who do care and do go the extra mile. But there are also a lot I think, that ignore their responsibilities as being the first port of call for many parents asking who help. And they have a lot to learn to join up the dots so that families don't get to the point of being desperate for help, but have some semblance of that a long time before that point.

3 comments:

  1. This has really struck a chord with me. We are not as far on our journey as you are, but have had similar difficulty accessing help and support when needed. And boy we needed it! We are also lucky enough to have a physio who has taken it upon herself to advocate for us. And we have benefited hugely from advice you and others have given us on the Bliss message board. I am now registered as a carer and have some help from Homestart. So I think you're more than an alright Mum. Blogs like this and forums like the Bliss one are a real lifeline when those that are supposed to be thrown out to us aren't. Thank you!

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  2. Here here! And enough of the 'I'm an alright mum' business. You're an amazing Mum and even with everything you are going through yourself you still ALWAYS find the time to support others. I bet your H.V would not hold up nearly as well under the same circumstances, if even in a paid role, she couldn't be arsed. She should have handed over your details to someone else. I'd be raging too. These people who think they can pop out of nowhere when it suits them but nowhere to be seen during the tough times.. Whywould you then turn to them for support?

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  3. Can't believe you haven't had any contact in all that time! Hope you are alright x x

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