Blog, Disability, Uncategorised

Honesty, trust, mental health and health care professionals

Have had a less than positive experience recently with a local hospital, which is a shame because on the whole we’ve always had a lot of help at this particular hospital. And we’ve been there a lot!

But this particular problem is pretty big, and does make me nervous about going back there. Given the health problems my daughter and I have had this is not a good thing.

My daughter was prem, there are plenty of posts on here about it if you wanted to know more. She’s never been an easy baby, she was good as gold the first week or so after we brought her home, but then she started getting more agitated and vomiting much more. Over the months that followed we tried all kinds of medications, we changed her formula more times than I can actually remember now, and every time we made a change she’d improve slightly for a couple of weeks and then the routine would start again.

She’d be awake from 6am to at least 1am (often 3-4am), and would vomit multiple times a day, and we’re not talking posseting, we’re talking projectile. Every single day. The only time she’d stop screaming was if she had a bottle in her mouth or she was asleep – and the latter happened much less than we’d have liked, and usually only happened once she’d screamed herself to exhaustion.

Now our son had been similar, though not quite as bad, because he is lactose intolerant (as was I as a baby). I knew there’d be some fighting with doctors etc, I remember that from last time. Lots of patronising “oh he’s a baby, they are sick, it’s called posseting” comments. So wasn’t hugely surprised when we got the same with our daughter. With our son it took 6 months of arguing, and then us eventually just changing him to a milk free formula against the consultant’s advice – within 24 hours both vomiting and screaming had stopped. At which point the response was, “oh, well keep on with that then”.

All easily solved in the end.

Our daughter hasn’t proved so simple unfortunately, but the doctors have (mostly) been the same. We suspect a problem with lactose again, so she’s been cow’s milk free for most of her life now, but that hasn’t actually fixed it.

Here’s where it gets bad though, we were constantly back and forth to the doctor’s surgery or to the paediatrician asking for help – begging to be listened to. And we were constantly fobbed off – it was normal, she’d grow out of it, it was a bug… All this time our daughter (who was small in the first place) was barely keeping any food down, then just before Christmas last year we had to call an ambulance as her lips, hands and feet went blue.

She was taken to A&E where she was observed for 2 hours, and when she didn’t go blue again she was sent home. Over the Christmas period though she went blue multiple times. We went to our GP who, after speaking to her paediatrician, decided to not send her to A&E again and instead book her a paed appointment urgently.

Nothing came through, and we took her back to the GP. This time the GP raised concerns about her weight and got her admitted to hospital.

They were very concerned about her weight.

We’d noticed that she was slightly more likely to keep solid food down than fluid, and would even vomit plain water. So the first thing they decided to try was a thickened formula substitute, first of all one with cow’s milk. That resulted in a horrific amount of vomit. So then they tried a cow’s milk free one, and she kept it down!

She was in hospital for 8 days, during that time she kept pretty much everything down. The new diet seemed (and still seems to) be working. But any tests they did were coming back clear, so no one knew exactly what was causing it.

Here’s the thing, it wasn’t just her health worrying us by the time she got discharged. We went in concerned about our daughter, and left concerned about social services.

One of the consultant’s decided to refer us to SS. Now we have dealt with SS before, once happily, once less so. The first time we asked for extra help, and while they were lovely there was nothing more they could do. This was just after my son’s birth and my mum’s death, I’d asked for help prior to giving birth as I wasn’t sure how I’d cope with a new baby and a bereavement. Our experience with them was nothing but positive.

The second time our daughter was in SCBU, we were struggling. Having to spend every day at the hospital, worried about her, not feeling able to bond, separated from our son for the first time, and still trying to recover from a traumatic pregnancy and birth. It was hellish. We were referred to SS, and while we felt it was unfair to have yet another thing to think about on top of all our worries, we were ok with it. Until the social worker we were assigned refused to accept that we just couldn’t take a day away from the hospital to wait in at home for her. In the end we had to take a day off from seeing our tiny daughter to deal with them because they were throwing phrases like “take things further” if we didn’t cooperate.

So hearing we’d been referred again, at a time when we didn’t know how long our daughter would be an inpatient for, was deeply upsetting. Especially when we were being told stuff like we’d been referred in case it was us causing our daughter’s weight loss.

The staff at the hospital calmed our fears though by explaining that the department we’d been referred to was totally separate to social services, that it was routine, and that it was to see if we needed support rather than judgement on our parenting. We left that feeling positive and relieved.

Then we got home, and spoke to those who we knew would be spoken to about us.

In those conversations we discovered two quite large lies.

1 – It is social services, it is in no way separate.

2 – It isn’t routine, we’ve been referred due to concerns about our children’s welfare.

When we were worried about our daughter and feeling vulnerable they lied to us. They betrayed the trust we put in them.

I believe that, like happened previously, nothing will come of this. And I am trying to think positive and believe that we will have another positive experience with SS.

But it doesn’t change that these healthcare professionals, who we trusted, decided the wisest course was to betray our trust in this way.

3 thoughts on “Honesty, trust, mental health and health care professionals

    1. It’s never just one thing at a time is it? Mostly I’m trying to focus on my daughter doing well, she’s thriving since changing her diet so at least we’ve got something really positive going on.

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