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Would like you to have me in your thoughts on Thursday 29th October please

Beannie

Registered User
Aug 17, 2015
94
East Midlands
I am about to commence battle with the SW's tomorrow (Thursday 29th October) after being given the number of the Chief Exec of Adult Services in our local area and a very sympathetic phone call with his PA.

My husband was diagnosed at the age of 57 with Idiopathic Parkinsons and Alzheimers Dementia in 2010/2011 respectively. He battled bravely on at work but had to stop in 2013. I have been his carer for the last 2 years and in July this year I could not cope anymore after his Alzheimers went downhill rapidly. After a heated discussion with the SS it was agreed I could place him in respite care for 2 weeks. It soon became apparent that I could no longer cope with his needs at home and he did not want to come back home.

I was told by Social Services because I didn't have 4 Carers a day, even if it failed they would not fund him in any shape or form. At the time I just took what they said as I was on the verge of a nervous breakdown myself. However, I have got myself together and I am now ready to commence battle not just for my husband but for all those who are in this position. I also have a meeting with my MP in November and shall be bringing up the Prime Minister's speech entitled Dementia 2020. I will post again to let you know how it goes but in the meantime 'let the battle commence'
 

Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
Oh Beannie, you have my every sympathy and support :)

I too was told in the summer that 'SS do not fund residential care at all', and then in the next breath that mum 'does not meet the criteria' for this care that they had just said was unavailable!! :eek:

We also had the 'you have to have four care visits a day before we can even look at it' mantra repeated over and over again. I couldn't get them to accept that mum only had three visits because in effect I was doing the fourth (and fifth, and so on......)

Mum's GP was at a loss, he said she'd have to be admitted to hospital before a care home would be funded. He was right, she was found a placement from hospital. But that put completely unnecessary stress on all of us, and on the NHS. So much better if she could have been placed from home......

Well done for pursuing this. More power to your elbow xxxx
 

DMac

Registered User
Jul 18, 2015
535
Surrey, UK
You are in my thoughts too. Well done for taking on such an important battle. Do let us know the outcome. x
 

nellbelles

Volunteer Host
Nov 6, 2008
8,747
leicester
When I took on social services I found the help from an advocate at our local carers centre invaluable, even accompanying me to meetings and prompting me how to respond to the panel of a dementia advisor, her boss a senior SW and a CPN.

Wishing you well.
 

Slugsta

Registered User
Aug 25, 2015
2,761
South coast of England
I will be thinking of you. It is totally wrong that anyone should have to fight for the treatment that someone else needs - but the sad fact is that you do, and I wish you the very best.
 

flowerpot

Registered User
Jul 27, 2010
2,450
61
Rural North Northumberland
You have my full support as two years ago we had this battle ourselves!

My MiL was in hospital after a fall while in respite! We had by then decided that she was going to have to go in full time as we just couldn't cope any more! (She was living with us up until this time)
To cut a long story short we had a meeting in the hospital where our ss guy was as always lovely and his boss who had to be at the meeting was a complete and utter *****!!!! She was adamant that we could cope with four visits a day and us doing the rest! How I didn't hit the woman I'll never know but suffice to say by the end of the day MiL had a place in a nursing home. She's still there and as happy as she can be. She has the nursing side of it paid for but is self funding for the rest.

Good luck with it all but really you and none of us should have to face these battles :( Being a carer is hard enough without any of the added stress.
 

Beannie

Registered User
Aug 17, 2015
94
East Midlands
Oh Beannie, you have my every sympathy and support :)

I too was told in the summer that 'SS do not fund residential care at all', and then in the next breath that mum 'does not meet the criteria' for this care that they had just said was unavailable!! :eek:

We also had the 'you have to have four care visits a day before we can even look at it' mantra repeated over and over again. I couldn't get them to accept that mum only had three visits because in effect I was doing the fourth (and fifth, and so on......)

Mum's GP was at a loss, he said she'd have to be admitted to hospital before a care home would be funded. He was right, she was found a placement from hospital. But that put completely unnecessary stress on all of us, and on the NHS. So much better if she could have been placed from home......

Well done for pursuing this. More power to your elbow xxxx
What they don't realise is, I have my 'very savvy' brother coming to scribe for me whether they like it or not and if they say no to funding again this time then it is straight back to the Chief Exec of Adult Services (we will be on first name terms by the time he has heard the last of me!!) and then to the local paper and radio station and then if still nothing, to the National Papers. I think they would have a field day in light of Prime Minister Cameron's speech on Dementia 2020. They have also told me a complete load of rubbish with regards to how much of my husband's occupational pensions they take, 100% according to them!! 50% according to the Care Act of 2014 which became law on the statute books in April this year. They must think we are all stupid, what we really are is vulnerable. I cannot afford to get into litigation with Solicitors but I can access a far wider reaching audience, via the media. I have nothing to lose and everything to gain. They cannot take anymore from me anyway, Parkinsons and Alzheimers has already done that. Wow I am truly on a roll!!!!
 
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Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
Sending you good vibes Beannie. Well done your brother, too :)

I have my fingers crossed for you. Really hope you don't have to go to the media but I admire you for being prepared to xx
 

MorbidMagpie

Registered User
Nov 10, 2015
23
England
I hope you got the support that you need.

I am unsure what your LA's policy is on funding residential care. In the one that I work for we have to exhaust all other options prior to considering residential care but we don't necessarily have to demonstrate that they have all actually been tried as this might put somebody at risk of harm, we just need to justify why we did not feel it appropriate to try an option.
Under the Care Act 2014 we also have to consider the impact of being a carer on someone's own physical, mental and emotional wellbeing and what risk of harm may be posed to themselves as a result of their caring role.

Unfortunately there is huge pressure on resources both when in our own homes and in residential care so we are having to really argue for services for both scenarios, people wanting to stay at home and people wanting to go into residential care. It is a difficult job and there are many inappropriate admissions to residential care as there are inappropriate decisions to remain at home with less support than can be offered in residential care, and there can be a fine line between the two.

I am both a social worker and I have a parent with early onset dementia (age 55) so I unfortunately have to face both sides of the coin, which isn't always easy in itself, but I do know that social workers for the most part do their job because they want to make a difference to people and don't set out with the intention of battling with families, but unfortunately the policies from above them make it very difficult to appear that they are doing anything but that.