Respite entitlement?

[Mike Floutier]

Hi,

My wife and I care for my Mum who is in the late stages of Alzheimer's and in spite of it being pretty challenging we have, with much support, been able to adapt and strategize sufficiently well over the last 4 or 5 years to manage.

A big part of "managing" has been the ability to have regular, planned respite breaks to look forward to. Recently we phoned to book our next round of respite breaks and finally were told that things were changing and we could not book any more breaks. As you can imagine, this was a little disturbing, especially for my wife who is the main carer. They have asked to do an assessment but they did not keep the appointment and didn't even inform us.

My questions are:

1. Do we have any right to continue to have respite breaks - we are saving the NHS a small fortune so hopefully we should, and

2. Are we likely to be asked to pay for the breaks - which are in a nursing home and NHS funded at present?

Thanks

Mike

 

[jenniferpa]

Hi Mike

Have you seen this http://www.carersuk.org/Information/Helpwithcaring/Cutstoservices

Essentially the answer to question 1) is no, not unless they do another assessment and to 2) maybe, if they change the criteria overall. Even if they do another assessment, they would have to show that your mother's needs had changed so that respite was no longer applicable, or your needs as carers had changed.

In your position I think I would put in a formal complaint now. Although generally in favour of trying to work within the system, if you've already been told no more respite, you don't have anything to lose.

 

[chip]

You should be entitled to a week every 6 weeks at the stage she is in, I was told thats the maximum allowed. I was to get it but that was done too late. You can take 2 weeks but wait 12weeks till your next respite Thoughout i had to fight to get any respite. Social Workers i found will use you till you are ill. You will have to tell them you need the maximum or you will complain. Its what you are entitled to. I think it works out to 8 weeks a year. If your assesment was done right it should be on it. The assesment i had done just said respite on it and not how many weeks allowed. Hope this helps

 

[alfjess]

Hi Mike

Don't know if this is the same stiuation or not, but I was told, when caring for my parents, that respite was no longer being booked, due to lack of council funds.

Only emergency respite was allowed.

I disputed this, because, I had already been assessed as needing 6 weeks a year respite and as I understand it, once having been assessed, the service cannot then be withdrawn through lack of funds.

Also the service cannot be withdrawn, unless your dependent has vastly improved, which I doubt is the case here.

Must admit, I had to involve our local councillor, our Mp, also tried our MSP (who didn't even reply, guess who won't be getting my vote next time)

I also wrote to the CEO of SS.

Lo and behold suddenly, I was being asked for dates when I required respite.

If all else fails, IT COULD BE AN EMERGENCY.

SS have a duty of care and if you tell them you will definately not be available to care for your relative, they have to make provision

Hope I have not offended

Take care
Alfjess