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Patient and public involvement in research study
Dear community, I am a postgraduate student at Imperial College London. I am conducting my MSc dissertation at the Royal Brompton Hospital with children and young people with Cerebral palsy. I need to apply a questionnaire on how they perceive their treatment, but I would like your opinion on whether this questionnaire is…
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Help me please
Dear god I am losing the will to live, my eleven year old daughter has just had her hundredth tantrum this week. Kicking, lashing out, spitting. She is very tall and very strong. My husband is still up there as I’m sobbing down stairs. We have four hours respite a week from this and have a two year old son. Help us please!…
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How to raise awareness?
Hi, I'm Isabelle. I'm 16 and I want to raise awareness for my disabled brother dan who i look after. Hes 24. He has several disabilites such as cerebal paulsy, epilepsy, a shunt due to meningitis which altered his CSF as a baby and he broke his neck at 6 years old. I've started him an instagram page in hopes to make…
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Support for my sister - what can I do?
Omg, where do I start.....? My sister has haemeploega (Not sure about the spelling) after a hit and run accident nearly 50 years ago My parents have kept her Molly coddled and won't hear about any help for her in terms of physio or any kind of walking aid, they've basically kept her more disabled cos it's easier for them…
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Early years SEN
I have a boy who is nearly 3 who has a speech and language delay. I am also looking at schools at the moment for next year and am wondering if he is likely to get a statement of SEN and if so how? Thank you
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Hints or tips to increase calorie intake?
This query is from a community member who wishes to remain anonymous: When caring for an elderly person who has little appetite and is losing weight, does anyone have any hints or tips to increase calorie intake and help them gain some weight? I care for someone in their 90s and they are eating so little despite offering…
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Tell us once system does not work
my husband died in February and I followed the tell us once, two weeks ago I received a Phone call informing me that I was in aarrrears with my rent and since my husband was deceased I needed to pay fulll rent. I am awaiting my benefits claims to be sorted and visited the uncan Center for some support the lady was helpful…
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E Z Lock Chair
Hello: My daughter has a Bolt on the bottom of her wheelchair to hook into our vans EZ lock system. Due to this bolt doorways in the house can be a problem. I have cut out a portion of the threshold in order that she may enter and exit easier, but the empty space is enough for mice to enter as well as cold weather. Has…
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I am the mum on an amazing 3 year old boy diagnosed with Cerebral Palsy
Hi everyone, I am the mum on an amazing 3 year old boy diagnosed with Cerebral Palsy Right side Hemiplegic, Developmental (including speech). He was born very premature and life expectancy was 20%! Here we are almost 4 years on. I have just resigned from my work to concentrate on him and getting him ready for reception in…
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Looking for others with a sibling in residential care
Hello everyone, my name is Jenny. I do not have any disabilities myself but my sister does. She has recently moved into residential care, and while she is flowering I am finding it exceptionally difficult to adjust. Are there any other siblings out there? It would be lovely to get some support. Many thanks Jenny
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Does anyone here have dystonia oromandibular?
dystonia oromandibular.Does anyone else have this disability..?thanks/
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Hi I'm new looking for advice.
Hi Everyone My name is Charlene, I'm a single Mum and one child. I'm looking for help on a few things. My daughter is 11yrs old and has autism. 1st is my Daughters school appeal for secondary school. Where can I get advice to prepare me for my appeal hearing and what kind of evidence would I need. 2nd I'm looking for clubs…
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Help with extra care days, spitting, and being violent
Hi there my daughters name is Harmony and she has autism I need help with extra care days please.
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Struggling with son waking during the night
My son is 4 and has been diagnosed with asd I've been begging for melatonin and keep saying there is a waiting list to see a clinical nurse it's making me I'll he can wake up every hour or tops is 4 hours I really need some help I feel that he has been diagnosed and then I've just been left without any help and I'm…
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HRM "virtually unable to walk"
Hello, My 3 yr old has hypotonia, developmental delay, hyper mobile joints, faltering growth and is currently being assessed for a neurodevelopmental condition. He currently receives mrc. He can walk but not very far at all very slow and wobbly loses balance etc. He has a wheelchair from wheelchair services. Really don't…
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Arranging home help for mum?
Live near barrow in cumbria. I work full time and also spend a number of hours daily caring/looking after my mum. There are no ither family so it is me who manages mums household and finances shopping etc. I want to arrange for some at home care/ help for a few hours twice a week but could do with some recommendations if…
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So much going on .
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I am a disabled parent with 6 disabled children and I really need some help
Hi I live in South West London in the LB Wandsworth. I am married. I have an adult diagnosis of ADHD, Agoraphobia and I have funding agreed for an ASD diagnosis with SLAM. I have formal EP tested IQ in the 'gifted' bracket. I believe I have what was previously called Aspergers or HFA. I also have sensory processing…
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Recently disabled and struggling to cope with not being able to be an active mum
Hi. Not sure if this is the right place to look for advice and support for my situation. So please let me know if not applicable. Thank you. I became physically disabled on 30th June 2017. It took 6 months of tests and fearing my brain was the problem before I was diagnosed with progressive deterioration of the lower spine…
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Don't know where to turn
My son is 30 how do I get him assed.?. I know he will call into the spectrum some where. I'm struggling
