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Parents of children with disabilities - Kat (3rd Jul 2013 - 12:26:18) Hi all, Is there anyone out there locally with a disabled child - mental or physical - who is struggling to get support from health professionals? I am fighting to get my child, who has a rare chromosome abnormality, a paediatric appointment. After several months, and as many knock-backs, I am now taking this to our local MP. If there is anyone else, who is having similar issues, and wishes to join my \'one-girl crusade\' or would like general support/contact, I would love to hear from you.

Re: Parents of children with disabilities - claire (4th Jul 2013 - 07:24:45) Hi Kat sorry you are having to struggle with support structures (or lack of them!!) Action for kids (google them)may be able to offer some support and guidance. also EDCM (every disabled child matters) have a lot of support available For children with a learning disability Mencap are politically proactive and will give advice on lobbying. Ultimately if you feel needs are not being addressed and that causes harm (or has the potential risk of harm ) you can raise it as a Safeguarding alert with the local (HANTS) child safeguarding board. If your child has a learning disability and is due to have an admission or appointment at a hospital you can approach the learning disability liason nurse for pre appointment/admission support . There is support out there but it is a disgrace that it is like an episode of the crystal maze trying to success it!!! just keep on keeping on :)

Re: Parents of children with disabilities - Kat (4th Jul 2013 - 11:01:53) Thanks Claire, It is a constant battle, and any advice of where to go for support is always welcome. Kat

Re: Parents of children with disabilities - Try Parent Voice (4th Jul 2013 - 17:49:07) There is a group called 'Parent Voice' in Hampshire which is a parent/carer forum and also has links to wider support services and short breaks. There is a parent group meeting tonight, if you can make it: at the Great Oak, Premier Inn, Petersfield GU32 3BS Thursday 4th July from 7.30pm

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