Carer's review

[Reds]

I receive help from a local County Council but a review is coming up. Person on phone said they are looking at ways of not giving sums of money out. The help I am given pays a Councillor which is great support due to my husband having Alzheimer's diagnosed at 58, now in 60s. I care for him dearly but his behaviour and ways affected my confidence and caused anxiety.

Just hope it doesn't have to stop! If anything matters are worse now due to incontinence. Think rather hard to be given something and then for it to be taken away!

Would be grateful for any help as I am worried about the appointment.

Reds

 

[father ted]

Hi Reds,

Please don't worry about the review. Firstly the person you spoke to should not have said they are looking at ways to cut the money. We all know that councils are trying to make cuts but your first point of contact should at least be positively encouraging n'est pas?

Secondly if your counsellor is a good one and you have a good rapport you may want to stick with him/her but in our area(South London) carers can access free counselling sessions for around 8 sessions. I was told there was a waiting list but I rang up anyway. I felt so low I broke down on the phone and they then saw me pretty promptly. The lady I saw was helpful and after 2 sessions I felt much better- just the relief of talking confidentially to someone who was not involved. See if you can get that where you live.

If your husbands needs have increased you should be looking at an increase in help both financially and services wise. Is he getting Attendance Allowance? Is he on the right rate?
Before the review I would speak to someone on the Dementia helpline for advice on what points to make at the assessment. Regards x

 

[Reds]

Hi Reds,

Please don't worry about the review. Firstly the person you spoke to should not have said they are looking at ways to cut the money. We all know that councils are trying to make cuts but your first point of contact should at least be positively encouraging n'est pas?

Secondly if your counsellor is a good one and you have a good rapport you may want to stick with him/her but in our area(South London) carers can access free counselling sessions for around 8 sessions. I was told there was a waiting list but I rang up anyway. I felt so low I broke down on the phone and they then saw me pretty promptly. The lady I saw was helpful and after 2 sessions I felt much better- just the relief of talking confidentially to someone who was not involved. See if you can get that where you live.

If your husbands needs have increased you should be looking at an increase in help both financially and services wise. Is he getting Attendance Allowance? Is he on the right rate?
Before the review I would speak to someone on the Dementia helpline for advice on what points to make at the assessment. Regards x

Thank you. I hope will be ok! x

 

[Reds]

I am so disappointed with the carers assessment. The County Council are going to stop my direct payment and the support worker who takes my husband to a day center, which means as a carer I will not be getting any support from the County Council. Shocked, when they have helped for a couple of years and they offered it.

Reds

 

[Everton Annie]

I am so disappointed with the carers assessment. The County Council are going to stop my direct payment and the support worker who takes my husband to a day center, which means as a carer I will not be getting any support from the County Council. Shocked, when they have helped for a couple of years and they offered it.

Reds

Hi Reds just reading this whilst sleep evades me. I also live in Hertfordshire and have seen what has happened to all our groups that used to be run by the Alzheimer's Society and now run by a consortium called Herts wise. My husband also has YOD and there are very few services that we can access. You could try Turning Point who are commissioned to provide a YOD service. They work with my husband once a week and are free. They also run a YOD art group in WGC and every fortnight have a trip out for pwd. Depending where you are there is a YOD support group that meets once a month in Hatfield giving carers the opportunity for some peer support. I am currently waiting the outcome of an assessment for my husband to go to full time care so given your circumstances am a bit concerned. I think you should ask them to explain why the direct payments are being stopped, it certainly can't be because your husband is recovering! Ask for a reassessment once you know why because it cannot be about money. If that fails and you have the energy contact your local councillor for support and failing that a complaint to the local government ombudsman. Do you get any other respite? Good luck

 

[Kevinl]

I never got any help from the LA so I don't know, but I though "direct payments" were when the LA assess someone as needing (say) one hours care a day, so 7 hours a week the either they supply the care visits or give you the money, you organised the care visits and use the money to pay for the care visits?
If you told them you were using the money to pay for you to have counselling not on care for him might that have been the issue?
It may be that there are other type of direct payments I'm not aware of which allow for this but I thought that like AA it was supposed to be used for the benefit of the PWD only.
K

 

[AlsoConfused]

My understanding of direct payments is that they can be used for anything that'll help the cared for person. Helping the carer to cope with the consequences to them of caring for the cared for person would be an appropriate use of the money. You'd certainly hope that any decision-maker involved in awarding the benefit would realise that ...

I think the reason money is being withheld is more likely to be the very difficult financial position the council is struggling with, due to government cuts in local authority support. Asking very pointed questions about the rationale behind withdrawing the money might provide illuminating answers and point to ways of resolving the shortfall.

Would your husband be council supported if you could no longer look after him? If so, please point out that residential care would be much more expensive than your care for the council so it's in their interests to help you keep going.

 

[Everton Annie]

Hi Reds am I right that the direct payment was for you as a result of your carer's assessment rather than a needs assessment for your husband. If so using it for counselling should be OK and I presume identified as needed to cintinue caring at your assessment. Stopping the carer for your husband seems even more strange unless a financial assessment says you can self fund. I would certainly want to know why.

 

[Reds]

Thank you all for taking the time to reply, helpful!

The County Council knew I was having the counselling when I have my first care assessment and they offered to pay it as they knew that my situation is very difficult re my husband's illness and his unusual behaviour.

Its not me that cannot go out at all, the problem is I am unable to take my husband out as his behaviour is too stressful to cope with so that is why a support worker comes. I mentioned to the officer that I go out for a couple of hours in the evening so that is why she said I can't have the support worker under my assessment even though we have had one for a couple of years!

Me and my husband never have a meal out together or a holiday and this has been for a long time now. His behaviour is too unpredictable.

I am still so disappointment about the annual review. I have sent a letter and have been told that the matter is being looked in to. I am aware of cutback but it was very harsh of them to do this to us all at once.

I don't think the officer treated me very well and I so wish that it had been a different one as the previous reviews were more considerate.

Feeling a bit low since the appointment. Thank you for helping.

Reds x