Trying to get a point home to local politicians

[looviloo]

maryjoan, I just want to lend you my support today. I have similar emotions as you to my caring role, although the situation is completely different (I have cared for my dad, who now lives in a dementia care home). I care for him out of love and loyalty, but the 'system' has tested my resilience to the maximum. It has affected my health and my finances, and my overall wellbeing.

The people who are in a position to provide expert support (GPs, social care workers etc) have often in my case been the source of the most stress and frustration. For instance, this summer I had to move my dad from a residential care home to a dementia care home - despite begging several times for help in navigating the system (which in my area seems especially complicated and underfunded) I was pretty much left to do it myself. I was paid a lot of lip service and often conflicting advice, but it came down to myself having to battle for one of the very few dementia placements available.

I guess what I'm saying is that continual underfunding and disorganisation in the care system has a knock-on effect on carers, who do not get paid but often have the greatest burden* of all.

But you already know this! Good luck... and thanks for everything you're doing x

(*Sorry, I know some people dislike the word burden...).

 

[Melles Belles]

The system is the burden in my opinion. The lack of understanding of dementia within the NHS and social services. No clear path or processes to follow for many problems carers face when supporting their PWD. If it wasn’t for TP, the helpline and Admiral Nurses we would be facing even more stress.

 

[maryjoan]

Thank you one and all - I do have solutions - one is a very easy one to implement and very cheap indeed - possibly just a few phone calls and/or letters.
The other requires a subsidy to provide respite care

I will let you know what happens later !!!

 

[maryjoan]

maybe direct them all to TP where they can read for themselves the experiences of so many people

I have suggested to several politicians and others, that they come on here as a guest, to see the size of the problem - I just wish they would spend an hour on here, and if they did not come away resolving to do something, then I would be surprised.

 

[TheBearsMummy]

Maryjoan, thank you so much for being willing to stand up and speak out I know I couldn't do it.
I hope they listen and that something positive results

 

[Theresalwaystomorrow]

Well @maryjoan you are fantastic
Whatever you put forward is better than nothing so well done you.
I also had to give up my full time job to Care for my elderly parents one with AD.
I’m also one of the unfortunate ones who won’t get my state pension until I’m 68!!
So iv come a cropper with that government decision as well, no pension for me to help look after parents, only the silly amount of £8 per day carers allowance!
Good look and thanks for having a voice

 

[maryjoan]

Well, a positive afternoon.

One of the people I met with said she would spend some time on TP as a 'guest' - in fact, she promised me more than once, and I believe her.

The main point I was trying to put across was that all official bodies dealing with Carers, should have a very thorough understanding of what life is like as a Carer, and that knowledge should then influence in a positive way, their decisions regarding us and the people we care for.

The other point was the disjointed way in which the various departments are connected and the accessibility of information for Carers. I am of the belief that when one is bowed down by the utter responsibility of caring for another human being, and the grief of losing the person they were, it is not easy to fill in yet another form, or read yet another leaflet. For most people the life they are living becomes rather isolated and very private. It is only on TP that we are truly able to say what we think.

I feel certain there are many people out there who are caring for a spouse or loved one, without diagnosis, or support, and this is not just with regard to dementia, but other illnesses and disabilities - My plan is for a regular radio programme on BBC local radio, that such carers can tune into and learn more about what is available, what their rights are, etc etc etc - in the privacy of their own home, without any interference. This programme could also have a phone in element. This idea was received with approval by the person I spoke to, and she also promised to look into this and put the idea forward to those above her.

Let's keep our fingers crossed.

 

[Theresalwaystomorrow]

Brilliant @maryjoan
Good for you and thank you x

 

[istherelight?]

I second that !

 

[karaokePete]

That sounds like a positive result @maryjoan. My fingers and toes are crossed for positive action to follow.

 

[Cazzita]

Well done @maryjoan for doing this - I salute you and good luck. Let us know of the outcome.
For me at this stage with my mum, I have had to give up work - a lot of money - to receive 65 paltry pounds per week to care for her! This is so insulting and an absolute disgrace; daylight robbery but of course none of this will affect the rich will it? I just cannot believe that we all suck this up and allow it to happen but we are too exhausted to do anything about it.
The whole system must be overhauled as more and more people get dementia. It cannot carry on like this.

 

[maryjoan]

Well done @maryjoan for doing this - I salute you and good luck. Let us know of the outcome.
For me at this stage with my mum, I have had to give up work - a lot of money - to receive 65 paltry pounds per week to care for her! This is so insulting and an absolute disgrace; daylight robbery but of course none of this will affect the rich will it? I just cannot believe that we all suck this up and allow it to happen but we are too exhausted to do anything about it.
The whole system must be overhauled as more and more people get dementia. It cannot carry on like this.

Absolutely correct - they rely on us being too heartsick and exhausted to do anything to change things. We cannot, and they know we cannot, go on strike!!

 

[AliceA]

So very well done once again.

I am a bit late finding this today. Too busy sorting out health issues.
I think the idea of politians reading some of the stories may well be a good won.
At the moment I am fighting the border issue that make too much a postcode lottery.
Interestly the reply from a government minister was swift, it made me think that my vote is getting more important!

Anyhow just cannot thank you enough. Xxx

 

[Grannie G]

My plan is for a regular radio programme on BBC local radio, that such carers can tune into and learn more about what is available, what their rights are, etc etc etc - in the privacy of their own home, without any interference. This programme could also have a phone in element. This idea was received with approval by the person I spoke to, and she also promised to look into this and put the idea forward to those above her.

Well done. An excellent suggestion.

 

[Cazzita]

Absolutely correct - they rely on us being too heartsick and exhausted to do anything to change things. We cannot, and they know we cannot, go on strike!!

Which makes them very heartless...

 

[la lucia]

I'm a journalist so I will always back radio/online etc., but beyond that here's my two cents... . ok it's about ten-and-a-half

Actually, I'm heartily sick of platitudes and so-called 'support' (beyond the obvious of a list of local suppliers, information and groups) ... I want practical things. Some of which used to be available and no longer exist.

Apart from significantly increasing Carers Allowance......

I want a guaranteed annual amount of bookable in advance, respite care - here it's gone from the odd possibility for a spare bed in a local care home (not bookable in advance by more than a week or so)to nothing. I know someone in London who has great access to local authority respite and he can go off to conferences and maintain his career. I'm jealous.

In our area in the SW the local CCG grabs spare care home beds for re-ablement and to cook the books on their hospital discharge figures. It's now virtually impossible to get a space and it certainly can't be booked.

I also want the ridiculous rules about Carers Allowance changed - it shouldn't be withdrawn when someone is in hospital or has a break because the caring duties don't stop. Quite the opposite for hospital stays - I've often had to spend 8+ hours a day on wards because if I don't it's almost guaranteed that my mother won't eat/drink/be kept mobile etc., Then I have to collect and wash clothes and during her last stay, cook and supply high calorie home made soups because she wouldn't eat anything else. If I go away I'm still on call and can be summoned back if it's serious.

I want the Carers Assessment to lead to a real offer of practical help not stupid 'wellbeing' nonsense that is another meaningless platitude. There's too much of this and it's gobbling funding that could be used for practical things.

Some of you may remember that I did a straw poll on here about CAs and what different local authorities offered. I had loads of pms which were brilliant and really illustrated how it varies from nothing to real concrete offers including funding for respite. I live in a nothing area.

It's outrageous that here in the SW the CA is outsourced to a charity that picks up funding to then offer absolutely nothing useful. That money could have gone directly to carers. It's ludicrous that something specifically for carers is assessed on the PWDs financial circumstances in many (not all) local authorities. At the end of my assessment I let out a very rude word. The assessor went quiet then said: "you are not the first person to say this."

And therein lies a huge part of the problem - privatisation. When local services were privatised they fragmented into loads of small parts with multiple layers of profit skimming. The commissioning process is a classic example of this. I dug into this and the profit skimming layers are invisible but eye-watering.

We actually had a local authority owned, purpose built, respite centre a few years ago but it has long gone.

Finally, the minute the person you care for dies, you are spat out into the world, often impoverished and with a destroyed career. The measly Carers Allowance is stopped and if you don't have money in the bank or you are too young for a pension you are done for. That's sooooo wrong.

I've actually been saving my mother's Nectar points for this thinking that at least I will be able to eat for a week or two...

I had a career and money in the bank when I started this role. The money has long gone and I have had little opportunity to replenish it. My career has taken a nosedive but could have been preserved to a degree if I had access to time off. I certainly managed to freelance and care full time in the first year or two. But I had family help to do the respite and that's not an option now. And I'm going to have to pull a rabbit out of a hat when my caring responsibilities end.

I've done a couple of R4 pieces on this but they always edit out anything I say about privatisation. Apart from one programme that has tackled some of the thornier issues, the current BBC runs a mile. [disclaimer - I'm ex-BBC ha ha]. This too is a common problem in journalism - puff pieces on dementia instead of real, hard hitting, indepth leg work.

Ok morning rant over back to the job

 

[marionq]

I'm a journalist so I will always back radio/online etc., but beyond that here's my two cents... . ok it's about ten-and-a-half

Actually, I'm heartily sick of platitudes and so-called 'support' (beyond the obvious of a list of local suppliers, information and groups) ... I want practical things. Some of which used to be available and no longer exist.

Apart from significantly increasing Carers Allowance......

I want a guaranteed annual amount of bookable in advance, respite care - here it's gone from the odd possibility for a spare bed in a local care home (not bookable in advance by more than a week or so)to nothing. I know someone in London who has great access to local authority respite and he can go off to conferences and maintain his career. I'm jealous.

In our area in the SW the local CCG grabs spare care home beds for re-ablement and to cook the books on their hospital discharge figures. It's now virtually impossible to get a space and it certainly can't be booked.

I also want the ridiculous rules about Carers Allowance changed - it shouldn't be withdrawn when someone is in hospital or has a break because the caring duties don't stop. Quite the opposite for hospital stays - I've often had to spend 8+ hours a day on wards because if I don't it's almost guaranteed that my mother won't eat/drink/be kept mobile etc., Then I have to collect and wash clothes and during her last stay, cook and supply high calorie home made soups because she wouldn't eat anything else. If I go away I'm still on call and can be summoned back if it's serious.

I want the Carers Assessment to lead to a real offer of practical help not stupid 'wellbeing' nonsense that is another meaningless platitude. There's too much of this and it's gobbling funding that could be used for practical things.

Some of you may remember that I did a straw poll on here about CAs and what different local authorities offered. I had loads of pms which were brilliant and really illustrated how it varies from nothing to real concrete offers including funding for respite. I live in a nothing area.

It's outrageous that here in the SW the CA is outsourced to a charity that picks up funding to then offer absolutely nothing useful. That money could have gone directly to carers. It's ludicrous that something specifically for carers is assessed on the PWDs financial circumstances in many (not all) local authorities. At the end of my assessment I let out a very rude word. The assessor went quiet then said: "you are not the first person to say this."

And therein lies a huge part of the problem - privatisation. When local services were privatised they fragmented into loads of small parts with multiple layers of profit skimming. The commissioning process is a classic example of this. I dug into this and the profit skimming layers are invisible but eye-watering.

We actually had a local authority owned, purpose built, respite centre a few years ago but it has long gone.

Finally, the minute the person you care for dies, you are spat out into the world, often impoverished and with a destroyed career. The measly Carers Allowance is stopped and if you don't have money in the bank or you are too young for a pension you are done for. That's sooooo wrong.

I've actually been saving my mother's Nectar points for this thinking that at least I will be able to eat for a week or two...

I had a career and money in the bank when I started this role. The money has long gone and I have had little opportunity to replenish it. My career has taken a nosedive but could have been preserved to a degree if I had access to time off. I certainly managed to freelance and care full time in the first year or two. But I had family help to do the respite and that's not an option now. And I'm going to have to pull a rabbit out of a hat when my caring responsibilities end.

I've done a couple of R4 pieces on this but they always edit out anything I say about privatisation. Apart from one programme that has tackled some of the thornier issues, the current BBC runs a mile. [disclaimer - I'm ex-BBC ha ha]. This too is a common problem in journalism - puff pieces on dementia instead of real, hard hitting, indepth leg work.

Ok morning rant over back to the job

Thank you for this. I can’t bear the fluff which is involved either. On the whole I’ve been lucky with the services I’ve accessed but the limited respite is the main problem. In the beginning stages part of my confusion was over the multiplicity of agencies involved especially charities like Princess Trust and Charities for the elderly. Eventually I realised they were being employed by the local authority.

Many of these filled in endless bits of paper which are no doubt filling drawer space or landfill now. Again the money would be better spent on simple straightforward practical help.