Frustration!!!

Submitted by Kitty on Thu, 09/01/2011 - 20:54.

I am someone who has great appreciation for the NHS and all they do and I am very grateful for their help but.... I'm sorry to say this but sometimes they do let us down. I feel I do a lot of chasing and often being pushed from pillar to post.

To summarise my lastest frustration - we've been trying to get feeding and sensory support for our youngest who has problems with eating and struggles with mess and dirt on his skin. We were also advised to get support for swallowing problems (choking) which could be linked to sensory (although other theories have been put forward recently).

So we've been trying to get support for these things for close to 3 years. We've been on various waiting lists and recently got moved from one hospital list to another. I was told a referral was written to S.L.T and O.T 2 months ago but when I rang this week to ask where we are on the waiting list I found we weren't on either waiting list and no referral had been done.

Not only this but I was told that these services may not be able to help anyway because SLT only help with structural oesophageal problems and its not yet know if my son has any. and OT have a 5 month waiting list and as they dont yet have a referral we aren't even on that list - plus they want to send us a questionnaire first to see if they can even take us on. So, having been discharged from the other hospital and not being guaranteed to be taken on at the new one we are left with nothing at the moment.

I need to fight for support but I no longer know who to fight? and what to fight for as I dont know myself how much is physical and how much is sensory?

Yes I'm a bit frustrated with the NHS today, but most of all I feel frustrated with myself - at my own ineffectiveness to get support for my son.

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Submitted by angie21 on Thu, 09/01/2011 - 21:55.

Do not beat yourself up, you are a wonderful mum. But I agree it is so hard to get support, even after people finally believe there is something wrong!

Submitted by Kitty on Fri, 09/02/2011 - 06:56.

Thanks Angela, just fed up with walking into closed doors and not knowing whats the for the best half the time. There is not enough support for children with gut issues, and for the problems that come with it e.g feeding issues, sensory, psychological impact etc. I really want to find a way to change that for everyone.

Submitted by Guest on Sat, 09/03/2011 - 10:37.

Hi Kitty,

I understand how you feel, but I am now so certain that will not change. The best support we can get is from each other and it helps me so much. Before this I felf v isolated and alone and feel like I am going mad. I still feel the mad bit now. For instance, why do the kids scream more with me when they have pain/ reflux. Constantly, through my head is, is it me!! Am I doing it wrong?

You are right about the pyschological impact, it is huge on the whole family. I never know if I am doing the right thing and always doubting myself. And the impact on the kids, I try not to think about it. So worried about them starting school and nursery. Will he have a screaming fit at nursery? How will they deal with it? Or is it just with me. The Cons said he almost def suffers reflux, but if that is so, why does it happen so much more with me. Or is that just the balance of probabilities.

Submitted by Kitty on Sat, 09/03/2011 - 20:03.

Hiya

I am glad using the site has helped. It helps me too to talk to other mums and I can honestly say i've had some fab advice and info from other parents!

its not you - its just the fact that you are with them more and they are relaxed enough with you, and at home, to let out their frustrations and upset. My boys are the same - good as gold out when they are distracted and our eldest pushes himself to get through school with no complaints, but at home they'll let it all go and get upset and tell me how they are really feeling. Or our youngest will throw huge tantrums and hit me but I know he doesn't mean it, he just has to let it all out somehow and somewhere and thats what us mums are here for!

I doubt myself constantly too! hence my blog about being upset with myself that I can't seem to get them the help they need. I'm rubbish at complaining and pushing and I think thats my weakness. I worry about giving more meds, not giving more meds, having tests or not having tests.....

Maybe this is natural when you aren't given clear cut answers or given a complex diagnosis?