No one Cares about Learning Disabilities/ early age Dementia

[charles47]

Had an Email this morning requesting us to attend a meeting of the Health Overview and Scrutiny committee in The Council House discussing Dementia. They want us to talk about our experiences!!!! Am so looking forward to it!! Only problem is that we need a few hours of care for our daughter. Will see if we can get it, but think we will !!

How did it go Jeanette?

And congratulations on the petition - 254 and counting!!

[Jeanette]

[b]Hi Charles .Just came in to update those who have shown such interest and supported me so well. Must say I am delighted you remembered the meeting!!!
I was expecting hard councillors whose main concern would be saving money, but they where so nice and so concerned ,and i think they did believe everything they where told![
To make it easier for my husband and myself(and two professionals who helped families with a person with dementia)they made it an informal meeting.wecould say whatever we wanted and they could ask anyquestionsthey wanted too. One of the councillors started crying because her aunt who she loved dearly ..had dementia!! See very close to home!!!
We where given approx one and a half hours, so plenty of time!!
I am so pleased we where asked..I am so pleased it was informal..I am so pleased THEY LISTENED and hopefully BELIEVED!!
It felt like two minutes, but it felt like I was achieving something positive in my awareness campaign too.[/b][/b]

[charles47]

Sometimes it takes hearing about something like this from people like you that makes the difference. It puts a face to a set of statistics and sometimes will result in a change. It may only be a small change - but you have to start somewhere.

You've done really well to even get to meet with councillors, let alone to have so much time to state your case - well done!

[Bluebird]

well done Jeanette, you should be really proud of yourself.

Bluebird xx

[rosemary]

Well done Jeanette.You came quite some distance in a short time.

x x

[Jeanette]

Another update for you. Had a visit today from our new social worker. (Met him once before) He said that it had been agreed our daughter could receive a 1 to 1 care worker and offered a place back at her old day centre. It isnt our first choice of a base so am hoping more thought will be given to that. There are masses of ifs and buts, but we are at least on the road to getting a service suitable to her needs. I am sure all this has come about because of the petition,and awareness campaign that you have all supported so extremely well. We shouldnt have to go to these extremes to get what is needed for the people we care for!!
thanks to all of you and will continue to update as hopefully..things happen!!

[rosemary]

Well done Jeanette,

You have done marvellous with this so far, and at least now you are making steps forward you can continue to build on it.

Rosemary

[Jeanette]

Here is another update for those interested, My daughter is in the process of having an assessment completed, and also a departmental meeting is being arranged. Her Social worker seems very keen to attempt to do as we want,but of course only time will tell!! The SS seem to want to force Carers to use Direct Payments but it just isnt suitable for our needs. (though I know it is very good for some) I just wish they would stop asking!!! There appears to be NO choices,and of course there should be!!
If they listened to Carers and acted on what we said ..how much easier our lives would be!
Am reminding you ,if you havnt signed my petition and would like to ..here it is again.I have until 12th April to get as many signatures as possible. I would be eternally grateful to you!!!


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

Jill.

[rosemary]

Thanks for keeping us posted Jill. I am curious to what the official response will be to your petition.

x x

[Jeanette]

Can only guess Rosemary ..and my guess would be.....£150 million has been put in the pot for the next few years and they will say that is for L/D as well as the rest of the population of people with Dementia. I have asked in our city how much 'we' will get but have had no answer. I feel that the awareness 'project' has been very useful and hope the petition will also raise awareness too, as well as hopefully channeling money in 'our' direction.
What ever happens.. have done my best and know at least something has come out of it. Have certainly learnt there are unknown people out there who genuinely do care and have put themselves out to assist me! That in itself boosts my morale!![/b]

[Caring_Mind]

Have signed - good luck Jeanette xx

[Jeanette]

Thanks 'Caring Mind' .I do appreciate you taking the time and trouble to help me. [/b]

[charles47]

Jeanette, you may be interested to know that one or two influential people in the world of Learning Disabilities have signed your petition. One, Cally Ward, has a son with learning disabilities in his 30s and has worked for the government's Valuing People Support Team - I think she is currently the National Lead for Carers for this team. Always nice to have support from the right people!

[Jeanette]

Thank you for that info Charles. I often look at the names of people on there, and of course know a few of them personally,know the names of Carers who write on the boards and the rest I donot 'know' or hardly know at all. Always hope some are important enough to take my concerns forward, and so can hopefully help redress this appalling situation Carers like myself find ourselves in. Because an illness is RARE nothing out there for us!! I really do hope this £150 million for people with Dementia will state that L/D MUST be included!

[pixienubbins]

will your potition still be active on the first of April as my ban is lifted then so i can start signing and (god forbid) starting new ones!


i hope the social worker will continue to support u and listen!