woman, 19, stays frozen in time as 10 month old baby due to mystery condition

Female Forum Forums General Discussion In the News woman, 19, stays frozen in time as 10 month old baby due to mystery condition

This topic contains 2 replies, has 3 voices, and was last updated by  SpinningJen 3 weeks, 6 days ago.

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    I think the saddest thing reading that article was the because they cannot put this girl into a specific box she is not receiving help that she might benefit from,  her parents are right you have to fill a checklist and only when all the boxes are ticked do you qualify for a particular help.

    it’s obvious the Daisy would have benefited from more help over the years but because she couldn’t tick all the boxes she’s been denied that and it’s wrong,  disability is disability regardless of box ticking.


    Yet another case of parents having to do the hard work as the system requires proof of things before allocating care. In my work I found it odd how some families had got all the care they needed and others tearing their hair out with the person affected having a similar condition. I do know from personal experience with my father with dementia etc that organisations will bring very heavy pressure on families to sort, what I feel to be, their problems. When he was in hospital awaiting a place in a care home (as he was incapable of living at home and our houses were not suitable) the hospital threatened to charge us for their costs. That was not good as he was in very latter stages of life so it was very stressful to our family, and we were not familiar enough with the system to sort the care. Social services were so cutback that they were little interested either. There are not enough care homes so many have a waiting list.  Most care homes don’t take or like dementia / alzheimer’s residents as they can be very disruptive and require more skilled staff. One in particular which he was accepted at phoned my brother in the middle of the same night as he was bothering another resident, saying take him now or we will call the police. Obviously their system was not very robust as he was not a violent type, mostly gentle as a lamb. He finally ended up in an NHS unit which specialised in such things and received very good care.

    From this and the experiences of another friend with a son with special needs I can say that you have to be very pushy in your approach. If people think you are coping, you will be low priority. Ticking boxes or not, if they dumped her on the doorstep, so to speak, she would get the care / support but no caring parent would do that. Even then though, I have come across some people living in care in places for years which were not really suitable in the first place. I would say though that years of caring for someone like this girl will take their toll. I don’t envy them. I have also met people whose health has suffered greatly through having to support a mentally / physically impaired adult as they can be (literally) a far bigger problem than a child, as this article implies.

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