David camreon needs to do more than sort one thing out

[SqueezyLouise]

I saw on the news today about resbite well I think there's alot more needed to be done , if I could of wished for a bomb to hit me or somin to take all the crap away I would of done along time ago , I ave 5 children I never had no issues before regarding my kids but havin a little girl 4 with spina bifida it's been a nitemare , she's amazing as a family we stick together but I'm sick of aving to fight for things and get nothing , arging that we want to be left alone , medical staff are a nightmare , council are to , we don't need a socail worker but without one we can't get free nappies for school grants to adaped house or anything , just because my little girl is disabled doesn't mean I should be treated like I do , I think we are all sick of it to be honest and I'm sick of writing letters to complain and getting no where

SL, I agree with you totally. We have social services involvement that I don't want as it is so intrusive but, the plus side is we do get resources from them.
I think it is about time that there was a 'real' partnership between those that need services and those that hold the purse strings. We have been lucky thus far but I am fed up to my back teeth of being the football between the practitioners who assess our need and those that hold the purse strings (this includes the LEA as well). Their internal financial squabbles are not our problem. They have a duty to provide resources for our children and it is neglectful and financial folly for them not to do so as the cost of the breakdown of the family unit further down the line is far greater.
Listened to some bloke on the radio this morning saying that there were stat guidelines for childrens services providers to adhere to.
Again, fairytale stuff - we all know there are guidelines but try telling that to your local authority. His suggestion was to vote for different councillors if your LA is letting you down - fat chance of that being effective when the issues do not affect the majority.

We have a severly disabled child.She has retts,epilepsy.scoliosis and is tube fed.We have to fight for everything.Shower chairs,beds,arm spilints,nappies,wheelchairs, everything.We have to take on the authorities all the time.We have haqd to use our mp to get a wheelchair and the health and parlimentery ombudsman just to get suitable nappies.When our daughters feed delivery turned up once everything else was there but no nappies when i rang the feed company they said it was out of stock and they would deliver in two weeks we had enough for 2 nights.Our social worker has told us not to ask for directed payments.We are allocated 24 nights a year respite this year we have had about half of that.It may well be that there is no money but my daughter is still here we still have a job to do in looking after her 24 hours a day we cannot do that if we do not have the equipment and services.Recently we had to wait for 9 weeks for URGENT cheat physio.Is this right.

It's terrible I had doctors try accusing me of all sorts not to my face but in my little ones medical notes but I no why they did it they feel there's always that might neclect the child because there's a disability and we should ave a socail worker but i think it's rubbish a person who hurts a child would regardless of disability and not everyone should ave a socail worker pushed in there face , I got are local council say to my 4 year old she's a danger to her self for being a wheelchair user and a liability crawling on floor coze kids may trip over her so we had to change schools I took all my kids out of that school , it's blimin wrong I tell you why that happened the council adaped so many schools bout 5 for disabilitys now they expect the children to go to these save money I didn't agree n put them in a school that needs to be adaped u no what they said where are they goin to get the money from they wanted me to feel sorry 4 em ,

I think Riven is representative of many stories. I hope that is not forgotten

Well said, Donkey

We got told if we want free nappies we need a socail worker and a assesment so I told them to stick it I think it's wrong Ashley as spina bifida and needs to use catheters but there not bothered, it's like I had to do all the training at school the nurse didn't turn up we got told we not high enough priority coze resbite and specail schools come first but that's wrong what about us who don't take resbite ?

All these complaints ave been taken up for years even when my sister was alive 20 odd years ago and my other sister 40 odd years ago . Parents / charitys all sorts ave begged for change and help with all this nothings ever done

www.mumsnet.com/Talk/_chat/1129157-have-asked-ss-to-take-dd-into-care/AllOnOnePage#23306847

Post on Riven's thread then. I did.

Don't they realise that if they don't supplt the services more disabled children will end up in care and that will cost the country far more.

Its such a sad sittuation .

I have tried to get a social worker and was told by my hv that i don't need one (this was back in the summer when i was suffering from depression and anxiety), the hv sent someone to my house to talk about finding a cllub for my dd's to attend during the holidays to give some respite, by the time they got back to me the summer was over (so total waste of time sending someone to my house in the first place), we still have no social worker and no kind of respite. My situation is a lot different from Rivens, my dd's don't need the level of care that Rivens Dd needs, i can't imagine how hard it must be for her to get through each day.

I wouldn't bother with socail workers , ashleys 4 and when she was just 3 week we got one I threw her out because apart from her feelin pitty on us and finding out are life story and offering to take my baby away before she left the house she wanted to check the house all over asked why she said well now ur a mother of a disabled child some leave there children in there own crap with out beds n that , I told her straight and made a complaint they said sorry and manager got sacked but ied never go back to them not when u here do many storys aswell , I've also been told many times in Bridgend by medical staff that somin needed to be done with socail services here before somin goes wrong !

David Cameron suggests LOCAL AUTHORITIES and not the Government responsible for implementing much need help and resources to parents/carers of disabled children. Like so many posts here, I have a son like David Cameron sadly lost, Cerebal Palsy, Intractable Epilepsy which he had extensive brain surgery for and complex needs, on the spectrum for everything. We as carers are unsung heroes and so much taken for granted. We have to fight for everything both medically and educationally. Never any light at the end of the tunnel. Mr Cameron was fortunate he accessed the NHS and had numerous nurses for his son. We the ordinary parent do have this luxury or resource. My sons Epilepsy intractable, lifelong medications and 24/7 care. We parents are human beings not robots. Not enough specialised people for understanding disability, especially rare disabilities. When is someone going to address this and help us parents. We battle against all sorts of trials and tribulations, and it is both exhausting and rewarding with a disabled child/young adult. We do not need the constant battles against the system. I totally empathise with the parent and recognise at times we have had enough and maybe cannot carry on! Who actually recognises us parents and the unconditional love and support we give our children??

David Cameron suggests LOCAL AUTHORITIES and not the Government responsible for implementing much need help and resources to parents/carers of disabled children. Like so many posts here, I have a son like David Cameron sadly lost, Cerebal Palsy, Intractable Epilepsy which he had extensive brain surgery for and complex needs, on the spectrum for everything. We as carers are unsung heroes and so much taken for granted. We have to fight for everything both medically and educationally. Never any light at the end of the tunnel. Mr Cameron was fortunate he accessed the NHS and had numerous nurses for his son. We the ordinary parent do not have this luxury or resource, as resources are limited and getting no better. My sons Epilepsy intractable, lifelong medications and 24/7 care. We parents are human beings not robots. Not enough specialised people for understanding disability, especially rare disabilities. When is someone going to address this and help us parents. We battle against all sorts of trials and tribulations, and it is both exhausting and rewarding with a disabled child/young adult. We do not need the constant battles against the system. I totally empathise with the parent and recognise at times we have had enough and maybe cannot carry on! Who actually recognises us parents and the unconditional love and support we give our children??

Well said I'm sick of being treated different too , that's all I want is Ashley to ave what she needs like adaptions done seating wheelchairs , I want her to be treated the same as others in school so she Can lead a normal life ...and I want to be left alone to bring up my kids not to ave to sit there noin medical staff are goin behind my back

What? Like he told the banks their financial problems were their own making and therefore should sort it out themselves?

I also have a DD who has severe memory and language issues, but not to that extent but she still needs constant supervision, we have tried everything from SS,CHAMS, school even our local MP, and still have no help or support for her, her school is very uncopeprative but due to a 3yr battle with the ed psy they tested her and now assessing her, ( i personally think they gave in due to it going to tribunal and changed there minds the week before we were due in court.) Iam now back to the waiting game on decissions but still get no help in the mean time.

Following on from my earlier post. I have been pro-active! Have constantly had meeting after meeting with people, medical, educational, social service. Went to my local MP, local MSP. Mr Cameron if you read these posts, why is it like this for us parents. Why such a battle? Can you explain to me , because no one else can. I have to travel down south to look at a possible placement 'Special Needs' for my son as nothing here suitable in Scotland? Why is that, he does not tick the boxes so to speak with Local Authority. I do not want my son just fitting in, he needs the right Sensory Integrated Approach. The list goes on and on and on. So the parent who is at her wits end, there are thousands more like her, myself included!

It's shameful the way we are treated I wish I found this site before to be honest back last year I was accused of leaving my little girls clubfeet even though we tryed for 3 years to get them corrected but nobody could do it with out a big op which we read would make her worse so I contacted a surgan who was on the BBC and we put a refural in to see him , Ashley got her feet corrected we took all the kids to Blackpool from Wales , then later we found out medical staff had before hand acused us of neglect and said if her feet were done shed be walkin ( I mensioned this in blackpool and they told us the truth we didn't neglect her there hospital did it for nothing because our stupid trust refused funding for her ( now david c should read that one ) money again and again

Yeh everything is always our fault.We are not nurses or trained.We are parents and its about time we got the help we deserve.

I might as well be medically trained I was left 3 month training someone up to do my littles catherters we got told they only had 5 nurses some were off sick and we wernt high enough priority app , I wanted to be there wiv Ashley anyway but there should of been a nurse I was back n for school 2x a day even though I ave 5 kids

These messages are the same time after time, relentless for us carers all over Great Britain. We are exhausted, sleep deprived, we have lost our identity, who we are. We are individuals whom are supposed to know everything concerning our Disabled Child. It would cost Local Authorities/Government Billions to take these children into care. The resources are unvailable because we the parents are seen to be coping!! Why can't we be given acceptable help in the home and adequate respite?

I have had a horrendous time as a career of my Autistic son. For last 16 years, life has been a total battle field of sleeplessness, demoralisation and stressful deprivation and debt. My daughter aged 14 , despite my continual efforts , remains undiagnosed by authorities even though she had a statement in primary school. I have had to fight tooth and nail to try to get everything my Autistic son needs and its cost me my marriage, we have been homeless and destitute and at times very desperate and afraid.. Its various multi agencies, via the council & social services all spouting the same jargon about lack of funding that have been the absolute bane of our lives.
They are so patronising and will do anything not to spend money on your disabled child ;they usually argue your child is not disabled enough for funding and its likely you will have even more of a battle on your hands, if the disability your child has, is for example Autism, which at first glance may not be that obvious but passed off as bad behaviour.
My daughter is failing at school; her statement was removed without my consultation , under the that farce of an action plus register when it first was implemented at primary school. I believe she has ADD but the psychology service wont diagnose her they say she doesn?t meet the current criteria the government has set to warrant diagnosis. I get one night respite for my son and that?s it.
There are so many discrepancies I could tell you about that have forced this family to the brink. It would take a book to explain all the under handed antics that this now broken family has had to endure at the hands of these encroaching so called agencies. I look back and shudder as I remember. For instance I recall having to get help form Men-cap to sue council / social services for housing. My two disabled children were forced to share a small bedroom and were attacking and biting lumps out of each other , the kids would not sleep I was totally exhausted . Still neither agencies or the local MP would help and the head of social services at the time rang to threaten me to stop the court case .She was angry as lawyers I had hired discovered the social worker she had assigned to the family, was not qualified so the recommendation for special needs housing this so called social worker had made were not accountable. I won the case with help from community care lawyers men cap helped me to get and not long after that we were given a four bedroomed house to rent. It took over two years to achieve and I nearly had a breakdown.

Education is terrible quagmire I tried to get my son into an autism school after moving to another bough but after being forced to home educate my son while pursuing a two year tribunal that cost £8,000 I was told there now was no place for my son .This happened when my husband got a job in another county,where I also had the support of family that lived there also , after he graduated and we had to move South to his new employment.. I will never forget how badly we were treated by all the agencies there.........they refused support and appropriate schooling and the stress of it all broke my marriage and my family apart. My husband left to follow his career and I ended up becoming a single parent carer in debt, right back in the area I left( initially in temporary housing) because that area was the only place I could get a special needs school placement for my son..

I am not surprised at the current head lines, it been going on for years one way or another.
I once did a short course in sociology and the lecturer told us that in the class system disabled people and their carers were the underclass. My retort to this was project where I interviewed carers and recorded why they were in this so called underclass. My lecturer read their comments and statements of how badly the system had let careers and their family down and it made him nearly cry, he was clearly shocked. In my view the governments are guilty of dusting disability off their shoulders with their so called ?Care( ????? ) in the community,? policies onto families who are made to pay the highest price but still it goes on and on and on........and we the carers are made to pay dearly in so many life devastating ways?.......
Now I would love to move to a different part of the country nearer to family but cant... ask any carer why I can't and they will tell you once you move county the authorities there will probably refuse services to your child in one way or another and life becomes so impossible ?. so am stuck miles from my family and their support........ alone, tired and without hope....my story is not unique....as the headlines show today unless you actually scream out from the highest roof tops that its really the end help is now where to be found .Its a disgrace that we as parent/carers in this day and age of awareness really be forced to the emotional extremes of having to literally dump our disabled kids on the door stops of city council offices before we are listened to by powers that be....there should have been help when it was needed instead of the exclusion and devastation the so called system with all its nit picking lottery post code criteria actually did nothing but destroy my family.

Hi

I identify totally with what you have written. Have added some posts. I have had Medical now Education battles. On my own with my son. At present no suitable school here in Scotland, so going to source a school in England on Tuesday next. Your are right it has never got any better. My son now 11 years old. It never ends. Did not know about this site until today. Someone, somewhere has to take some responsibility ie David Cameron as he has first hand experience of having a Disabled child. My son has same as his son had also complex needs. It should not be like this at all, the vulnerable/disabled should not have to endure this twilight zone' You cope with so many emotions having a disabled child. No one said life easy whatever is dealt to you, but this constant battle with resources that should be applicable, and easily avaiable to Carers AND their families intolerable.

Hi Guys,

I registered with Mumsnet a few years back when I was looking for a home job ( I saw on a tv programme that this was the best place to look and not get ripped off ) Of course I forgot all about it and now the email I used is gone lol.

Anyway what brought me back, and back posting is the Story about Riven. I've been looking through the posts and feel sad angry and lots of other emotions all mixed up. I too have a disabled son and have had to fight for what he is entitled too. Still fighting now!!

I have posted on the FB page.

Just want to say please no one give up fighting for your children. Maybe if we all fight together as one we can make a difference.

I have herd the council or ss get more money if they get kids to foster or more points or somin sure that's why they do it , they want people to put there kids in care to get this I think , I've read this on the website before don't no if others ave herd this aswell and us givin up is playin in to there hands , we are not bad parents like they all make us feel