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Very Early age dementia in Down's syndrome.

Helen33

Registered User
Jul 20, 2008
14,697
Dear Jilljay

I've signed and will pass it onto others who I am sure will sign.

Well done you:)

Love
 

lesmisralbles

Account Closed
Nov 23, 2007
5,543
Do you query places like Crossroads for example as to what they offer and whether their training covers very early onset dementia in people with Downs Syndrome?


I have to say that the Crossroads lady when she came to do an assessment on Ron's needs did not know what Lewy body was:(
So, I suspect a lot of people, even the professionals are not up to speed.
Barb X
 

jilljay

Registered User
May 22, 2005
74
Birmingham
Thank you

Thank you so much those who have signed my petition.It is extremely kind of you as I know how hard a carers life is,and you finding time to try and make the gov aware of an appalling situation in my home and around the country is commendable. I hope I can return the kindness in some way!!
34 have signed so far and I need at least two hundred.
I will up date if I hear anything.
Thanks once again.
 

jilljay

Registered User
May 22, 2005
74
Birmingham
Thank you Janet ,Every signature is soooooo important. 71 have signed up to this morning, so need another 129.Have my fingers crossed.Will do my very best for these young people (including my daughter of course) who are just ignored because of their age and disabilities!!!
Life just isn't fair but in this case ....totally unjust!!!

http://petitions.number10.gov.uk/uk-ead-ld/

Please anyone reading this ...your signature is vital to help young people with Learning disabilities and dementia. My own daughter went into this very cruel disease at 32 years old!!

thank you for reading my message.
 
Last edited:

Sam Iam

Registered User
Sep 29, 2008
3,151
58
WEST OF THE MOON
Jilljay,
I have signed your petition. I chose to care for people with LD and sympathise with you so much, the folks I care for deserve so much more than they recieve. XXX
 

jilljay

Registered User
May 22, 2005
74
Birmingham
Thank you so much Joanne,Julie and Sam.The petition is now at number 115 so only 85 more and the gov has to answer!!!!If I told you just how much we had been let down I dont think you would believe me ,but will tell you this bit.In the last few years have had four proper specialist social workers ..All did barely nothing to help and all left with out informing us.We also had an agency Social worker sent to do an assessment.He was given all the wrong forms.The ones he was given where for the elderly.my daughter was only about 38 at the time. the last one we saw was a duty social worker about a month ago.Bet you know what is coming!! Have not heard anything from him either. So hope you can all understand why my petition is important to me!!
Thank you everyone for being so kind and supportive on here.
I often think ..what goes around comes around so hope all of you will receive the same type of kindness and support too if and when you need it.
http://petitions.number10.gov.uk/uk-ead-ld/
 

jilljay

Registered User
May 22, 2005
74
Birmingham
Just an up date on my petition.Only need 6 more signatures to get the minimum necessary for it to go to the gov!!Everyone has been so kind to sign and I wont forget it thanks everyone.!!http://petitions.number10.gov.uk/uk-ead-ld/

 

jilljay

Registered User
May 22, 2005
74
Birmingham
Thanks Sam .Have reached and passed 200 now. It was 223 the last time I looked.I was told ,The larger the number who sign ,the more notice that will be taken. I just hope the time and trouble everyone has taken on our behalf ..wont be wasted! I have now started to approach the media.Just my favourite national daily paper at the moment,but will see if they appear interested at all? Usually I am an optimist, but on this particular topic just wonder how much further I can go?? Have brought it to the attention of SO many professional people already!!! Anyway still have a bit of energy left so will see!

!http://petitions.number10.gov.uk/uk-ead-ld/


Here it is again just incase someone else wishes to sign it.
Thanks once again everyone!!you are MY Carers champions!!
 

Rowangarth

Registered User
Jan 26, 2009
2
North Birmingham
Neew service located in Birmingham

There is a new private Day Centre in North Birmingham which is able to provide support. They accept direct payments and people funded by social services. They cater for anyone aged 18 - 65 with a disability and have working age dementia clients as well as learning and physical disabilities. They provide a far more appropriate environment.

Have signed your petition by the way. Good Luck
 
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jilljay

Registered User
May 22, 2005
74
Birmingham
Hi Rowangarth, I believe I know the place you are talking about.Have read a brochure,which sounds very good, and talked to someone from there.Was told it wasnt suitable for our needs,but hopefully in the future might concider doing something suitable on my side of the city.What ever happens in the future there is still nothing out there for people like my daughter now. For the majority..People who are 50yrs and over are called people in early age dementia. my daughter was 32yrs old ,and is now 41yrs old.So a specialised service is needed,And needed ASAP .I dont want her to go in a residential home,but stay in our home with her Mom and Dad who love her!
Thanks for signing my petition .I do appreciate it.
 

Rowangarth

Registered User
Jan 26, 2009
2
North Birmingham
Hi again,

Would be interested to know who you talked to because I think you may have been misinformed. If you contact me on the number I sent you in the private message, I would love to hear from you. I have heard today about a service in the south of the city. I am uncertain which bit of Brum you live in.

Am happy to help if I can.
 

jilljay

Registered User
May 22, 2005
74
Birmingham
Will contact you tomorrow 'Rowengarth'am very interested in what you are saying. I did answer you tonight in the private box but for some reason the message wouldnt go. your day centre is a long way from my home ,but I do think I should have been made aware of it!! We where sent to most corners of the city to see if various places where suitable. None had been trained in Very Early age dementia and L/D and there where other reasons too. I did think when I started my awareness campaign someone would contact me saying there was a service out there!!Up til now you are the first (even though to far). Am very pleased for those you have there.
Thanks for offering your help.
 

jilljay

Registered User
May 22, 2005
74
Birmingham
Appreciated your time for a chat yesterday 'Rowengarth' A very interesting conversation. Both ways I hope! Although not suitable (possibly only because of the distance)it does tell me that new 'centres' are opening up and we as carers are not aware of them! I am still of the opinion that very early age dementia is still not being concidered. (or hardly, unless it is brought to the attention of a new service), only the over '50s'needs. Have now reached 235 in my petition and have sent it to our local councillor,Our MP,the director of Social Services and Health,and a letter to The Daily Mail. None of these have responded positively yet! (other than the councillor said he would make enquiries.)
So it goes on and I am still in a fighting mood.(not physically ,lol)
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,332
Kent
Hello Jilljay

Sorry. I signed ages ago but must not have received a verification email and to my shame forgot all about it.
I have signed again and hope I get my email this time.
 

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