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UK legal, insurance, employment, benefits, statutory services Advice offered by HDA Moderators relates to current UK law or guidelines

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Old 02-06-11, 07:09 AM   #1
telibeli
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Default Sister got her care package.

Sometime ago Sister had an assessment by adult services and was awarded around 20hrs a week in Direct Payments for someone to help with her daily needs. At the same time as this was being processed we had a Team Around the Child (TAC) meeting. Sister's OT turned up. Was slightly disgruntled that there was no talk of a care package being put together. She has been fighting for this for over a year now. Anyway, she arranged another review with various specialists. We had to keep diaries of Sister's daily activities and the support we needed to give her, the concerns we have when leaving her alone, helping the kids, etc. We had a Falls Assessment and finally an assessment with a Neuro-psychologist. Phew! That was an eye opening experience. All the little things we thought we were coping with and working out were quickly bundled up into "She needs full time, professional care. " After a very hurried month and many, many meetings we finally got the care package. She has been awarded care between 8am and 5pm each weekday. And this is all paid for by the PCT. So from 20hrs to 45hrs in one hit. Definitely worth the running around.

We are having a meeting with a care provider on Monday so we can discuss the needs and then we start interviewing. We are all very excited. It will be another month or 2 before anything is in place but we are there, finally.

We've also looked into getting support for the twins. Her daughter can attend after school clubs because she goes to a local one but her son who is autistic attends a school out of town. He has never been able to attend after school clubs because there's noone to get him there and back. I don't drive and Sister's partner doesn't finish work til long after the clubs are finished. Next hurdle but I think we cope with this one.
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Old 02-06-11, 07:53 AM   #2
Trish
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Default Re: Sister got her care package.

[QUOTE=telibeli;44799]

We are having a meeting with a care provider on Monday so we can discuss the needs and then we start interviewing. We are all very excited. It will be another month or 2 before anything is in place but we are there, finally.

QUOTE]

Well done for getting more support! Must be a huge weight off your shoulders in many respects to at least be seeing signs of real progress.

If you haven't done so already, may I suggest you look at the HDA's Home Page and lok up the factsheets for professionals?

When speaking to the Services to organise the care package for Hubs I referred the Manager to the site "useful information". I also printed off copies of the Appendices from the booklet on Healthcare by St Andrews.

Appendix 1_ I have HD – this means

Appendix 2_Tips for making life easier

http://www.hda.org.uk/download/fact-...ds-Of-Care.pdf

It helped emphasise it wasn't just me being a mother hen type of character... it had been recognised HD patients need structure etc.

Best of luck for Monday.
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Old 02-06-11, 07:59 AM   #3
jaq
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Default Re: Sister got her care package.

Great news .

Hopefully things will become easier and less stressful for all of you and your sister and family can have more quality time together rather than dealing with stressful day to day stuff .
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Old 02-06-11, 08:22 AM   #4
telibeli
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Default Re: Sister got her care package.

[QUOTE=Trish;44800]
Quote:
Originally Posted by telibeli View Post

We are having a meeting with a care provider on Monday so we can discuss the needs and then we start interviewing. We are all very excited. It will be another month or 2 before anything is in place but we are there, finally.

QUOTE]

Well done for getting more support! Must be a huge weight off your shoulders in many respects to at least be seeing signs of real progress.

If you haven't done so already, may I suggest you look at the HDA's Home Page and lok up the factsheets for professionals?

When speaking to the Services to organise the care package for Hubs I referred the Manager to the site "useful information". I also printed off copies of the Appendices from the booklet on Healthcare by St Andrews.

Appendix 1_ I have HD – this means

Appendix 2_Tips for making life easier

http://www.hda.org.uk/download/fact-...ds-Of-Care.pdf

It helped emphasise it wasn't just me being a mother hen type of character... it had been recognised HD patients need structure etc.

Best of luck for Monday.
You know Trish, it never even occurred to me to look at the info on here. I will be putting the printer to good use over the weekend. Thank you very much. It will certainly make life easier.

Jaq, I am looking forward to becoming a sister again. As you know, it's the most difficult thing to do, becoming your siblings carer. Or anyone you love. I know I will still be heavily involved in her care and don't want to change that. It will just be nice having some one to help lift the burden. I feel like I've been running two households and two families for so long now and I can feel it in my every being. I get so exhausted so easily now. I'm constantly ratty which is hideous and achieves nothing. We are lucky in that Sister is accepting that she needs support and that I need support to continue. At first it was hard getting her to see that. She couldn't understand what my problem was. She doesn't understand it, sadly she can't any more, but she has accepted that this is the way it needs to be.
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Old 02-06-11, 12:08 PM   #5
ru
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Default Re: Sister got her care package.

Hi trish i just had a look at the link you posted about i have hd this means - , its been a while since i have looked at this and i tend to forget what having hd actually means, we go on day by day coping but forget how it is to suffer with hd, now i feel really guilty coz i do repeat myself a lot and im not always patient waiting for hubby to reply! i think im gonna make sure i look at this list of what its like to have hd at least once a month just to give myself a kick up the you know what, so thanks for posting it, im sorry to go of track with the origional post , telibeli , im really glad you got the care package you deserve x
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Old 02-06-11, 01:05 PM   #6
Trish
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Default Re: Sister got her care package.

Quote:
Originally Posted by ru View Post
Hi trish i just had a look at the link you posted about i have hd this means - , its been a while since i have looked at this and i tend to forget what having hd actually means, we go on day by day coping but forget how it is to suffer with hd, now i feel really guilty coz i do repeat myself a lot and im not always patient waiting for hubby to reply! i think im gonna make sure i look at this list of what its like to have hd at least once a month just to give myself a kick up the you know what, so thanks for posting it, im sorry to go of track with the origional post , telibeli , im really glad you got the care package you deserve x
Carol,

I too felt a lot of guilt at times and there is a lot of guilt invested in my poems that's for sure. We are all human at the end of the day but I agree... carers looking at the list every so often brings us back to basics.

The bit that has always affected me the most, and I have the tears streaming down my face even now, is the line that reads...

I remember my life before I had this.

You are doing a great job, all carers are, but that list is like a Mission Statement and Mission Statements are to help focus. Doesn't help the workers have to cope with a lot of you know what which throws us all off course at times.
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