Carers' views on social workers sought.

[nelliejo]

No idea what the time limit is on this thread - when you need replies in by!

I approached local SS 11 years ago on advice of the experts at the professionals meeting to diagnose son's autism.
Took 9 calls over the course of 4 weeks to get someone to call me back - whenever I rang I was told the person I needed to speak to was unavailable but they would ring me back. They never did until the 9th call.
I was told they couldn't help me because my son "not disabled enough, he's only got autism" - left me speechless and deeply hurt at a time when I was feeling very vulnerable as still in shock at diagnosis.
When I found out later about carer assessments and rang to ask about how I got one was told I wasn't entitled to one.
I do not have a good opinion of SW - they seem to exist to make life MORE difficult for those already struggling, not better.

[cheekipixi]

Hi, I thought it was just me but registering here has changed my thoughts entirly with regard to being alone, on the way I have been treated over the yrs by the 'proffessionals', saddens and appauls me greatly, because these are children that nobody seems to want to help and especially by the ones that CAN help. Only a little while ago I sent below to CARERS questions because not only have we as parents of these children had such a hard time with our children but we also have the impossible job of getting, advice, support and believed.

Thank you for your advice, you got back to me very quickly, thank you.
I have already approached my local Authority some 8 yrs ago and for doing so I have been 'dragged' down the protection route 3 times now for having bipolar. It took me 4 yrs to get an assessment completed for being a carer, this was completed Dec 2008, I refused to sign it as it was all wrong, to date I still await this. All their assessments are always wrong. My son is now classed as a LAC child even though I was the one that fought for respite for him for 2 yrs, my son is at the moment having 1 night overstay per month but has been assessed as having 2 separate respite carers on alternate weekends but this is still 2 overnight stays which is 1 night every other weekend. My son attends a special school in West Kirby (out of county) and I managed to get this for him. He has a proposed statement, which I fought for for 4yrs, I completed and sugned this just before Christmas 2009, they authorities lost the first completed proposed statement and I am still awaiting the final, all in all this has taken 5yrs. My son is not allowed to go to after school clubs (as in cubs, scouts, dancing etc) he has amongst many other disabilities severe behavioural problems for which he is highly medicated but still these clubs refuse to except him and that is with myself or a sessional worker attending with him. Barnardo's have refused to help him, Crossroads have just turned him down, where they were to come into my home and sit with him for 2hrs an evening, once a month to enable me to attend a support group. My son is a brilliant street dancer, self taught but he cannot access this kind of activity and even the group which is run by the authority for disabled children won't accept him as the authority do not see him as disabled, even though the Disability Rights Commission have stated he should most definitely come under the category of 'Disabled'. We as a family have been subjected to the most horrific abuse from neighbouring children and their parents because my son is different and even Social Services, the police, NHS services etc have mentally abused and neglected him and us as a family. Trying to get some sort of justice up to now has been impossible and the abuse continues.
I do apologise for this rant, just a low day today.
Thank you anyway for your advise and thank you to all carers support for the priceless presents as without their support I know I wouldn't be here today to carry on the fight for a better future for my son.
All the best
Kim Bell[/i]

[Matt Carers UK]

When I found out later about carer assessments and rang to ask about how I got one was told I wasn't entitled to one.

The eligibility for a carers assessment is very broad. I don;t know your circunstances but it seems very possible they are acting illegally in refusing you an assessment over the phone. The fact they have not assessed your son as not being severely disabled "enough" to need help, doesn;t mean you are not in need as a carer.

http://www.carersuk.org/Information/Hel ... smentguide

The law says you have a right to an assessment if care for someone for 'a substantial amount of time on a regular basis'. The relevant legislation here is the Carers (Recognition & Services) Act 1995 and the Carers & Disabled Children Act 2000.

Sadly, not all professionals are aware of carers' right to an assessment and some carers are wrongly told that they are not entitled to one. If this happens to you and you believe you are entitled to an assessment, you should put your request in writing and ask why they are refusing you an assessment.

[nelliejo]

Hi Matt,
appreciate the info, only wish I knew about CUK 9 years ago
unfortunately I'm even LESS likely to get an assessment done now than I was then. Eldest son now 16 and has just heard he has a place on an extended-learning college course so my caring hours will be reduced from September.
I needed the help when the boys were small and had the challenging behaviour, etc. I spent years on waiting list for Crossroads but never made it to the top either
Used to feel very bitter that never had any help from anyone (their father, my family, professionals, charities, etc) and did everything myself with no input from anyone except 20mins at CAMHS twice a year.
Now I look at my kids and think - I got them to this stage - this is MY success and mine alone, and I'm very proud of that. Knackered, but proud
Once he's settled in to college I'll be haunting you for info on getting back to work though so you have been warned

[Matt Carers UK]

I'm sure others will relate to that - knackered but proud! Maybe we should have it on some T shirts.

Look forward to you coming back and haunting us in September

[nelliejo]

Cheers Matt - love the t-shirt idea. I got some made up for the boys xmas before last - says 'define normal'

People treat them with a bit more respect now

[MAstudent]

Thank you so much to everyone who replied to my request. I am closing this post as I have now submitted my work, which was a powerpoint presentation in which I included some views of users of this forum in order to get students thinking. But please don't forget, social workers can be informal carers too. Thanks again.

[Lazydaisy]

Thank you so much to everyone who replied to my request. I am closing this post as I have now submitted my work, which was a powerpoint presentation in which I included some views of users of this forum in order to get students thinking. But please don't forget, social workers can be informal carers too. Thanks again

We had a talk one Carers Day from the Head of Social Services, who talked about when he and his wife had been informal Carers for his mother-in-law. He said how marvellous the Team was, when he needed extra support, he phoned in the morning, and they had the support set up by the afternoon!!!!!!I was not the only one to stand up that day and comment on his remark, and how did he manage to get the support, as nobody else could get it that quickly.

It may have been nice if MA student had commented on whether he/she had actually learnt anything from this topic, or if he/she had even felt it has been worthwhile to read what we as Carers are saying. It feels as though we have been dismissed.

[marie66]

Matt, when we are asked for opinions etc. it would be nice if we at least had an opportunuty to see the end result so we can see how we were quoted!

Can Carersuk look at that? as things stand with this section, we really don't know how we are recorded in any of these documents, powerpoints etc.
Can anyone in Carersuk check we are not misquoted?

The way things are just now doesn't sit well with me so I've now stopped contributing.
marie x

[MAstudent]

Dear Marie and LazyDaisy, As I wrote in my original request, no names have been included in my work. Are you aware that what is written on the Carers UK forum is accessible to anyone online and is therefore already in the public domain? You do not have to become a member to view the content, only to post.

[Lazydaisy]

Fully aware.
In the last ten months, nobody from Social Services has been in touch to see how my elder son,who has a Learning Disability, is coping, after the sudden death of his brother.As one of our complaints to them involved trying to prove that Insulin dependent diabetes could be fatal if not kept under strict control and I kept being told not to exaggerate, then perhaps they are giving us a wide berth;both my boys had type 1 Diabetes, and the younger one died because of it.If I had not had to fight Social Services constantly for the correct procedures to be followed by Learning Disability staff,(and believe me, I have tons of paperwork from and to them to prove it), then perhaps I would have been able to apply my brain to the needs of my younger son and he would still be alive. I feel very bitter towards them.
There is one person who has been in touch a couple of times;the Learning Disability nurse who became involved after our complaint. She works within the LD multidisciplinary team, but is employed by the NHS, and when our complaint proceeded, it had to be done through two complaints, one NHS, one Social Services, so I have two lots of paperwork for exactly the same complaint. The mess that Social Services made took me two years to sort out, including getting a lie taken off my elder son's medical notes.(oh, and incidentally, when I was able to prove the lie, it was only the NHS who apologised, not Social Services).
Unfortunately, there is still no comment about whether you found the comments useful or whether they are likely to help.

I am having a bad morning this morning, and I don't mean to sound offensive. If the words have come out wrong, I apologise, but this really is exactly how I feel.Along with the tears and exhaustion of grief and long process of mourning, I have to continue to be a 24/7 Carer for my son and my husband.

[simone]

I haven't been lucky with Social workers either. They did not want to listen to my point of view of my daughter's. I am now refusing to see them and everyone wants me to forget but I can't.

[AspieMum]

As a result of my now ex-husband's behaviour my children were on the At Risk Register for a while. My experience of their social worker was she did the nearly impossible and found somewhere my Aspergers Syndrome could be diagnosed on the NHS but although she was from Children's Disabilities (because previously Sure Start had requested they fund some day care time for the twins as a form of restbite which social services had started paying for at this time but I found out when I moved that they didn't actually meet the criteria for children's disabilities) she really hadn't got a clue about Aspergers Syndrome and the misunderstandings were constant and continually putting my children at risk of being wrongly taken into care (which would have done them a lot of harm). Also they assumed because I had undiagnosed Aspergers Syndrome I must be neglecting the kids (which they later realised was not the case). What I went through felt like a form of abuse and abuse that was legal. I was left fighting (not physically) the social workers as well as my then husband, the children's dad, in an attempt to keep my kids safe and being abuse in one form or another by both my then husband (who was phyisically abusing the kids as well and the social workers were preventing me protecting them properly) and the social workers. After I moved away with my mum' and dad's help the case was closed and they were removed from the At Risk Register. The experience left me terrified of social workers.

More recently I tried to get some help from social services but even though both my twins qualify for higher rate care commponent DLA and lower mobility and my oldest for middle rate care and lower mobility they don't meet the criteria for getting any help. They did not tell me this themselves. My twins' school had to find out for me.

[Echo]

"Carers' views on social workers sought."


Really????????

[charles47]

Know what you mean, Echo!

As the originator of this thread has now completed their study, and the consultation is over, I'm locking this thread. If anyone has any comments about their own experiences and needs to let off steam, there's plenty of space on the other parts of the forum!