Looking for Practical Help: I have now... - British Heart Fou...

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Looking for Practical Help

Jwares profile image
12 Replies

I have now had 4 heart attacks since 2015, started at the age of 31 and a double cabg in May 2019.

Since the cabg was done I have been even more ill, their last throw of the dice didn't work and I am now at 36 received palliative care for advanced heart failure.

The thing I am struggling with is practical help to allow me to live as independently as I can for as long as I can.

Over the past year since the cabg I have been able to look after myself (just) but everything around me in my house fell to bits. This has resulted in my home being hoarded in everything and dog mess as I wasn't fit to get down stairs to let him out.

As such the police broke in when I had my last heart attack and they made an urgent referral to adult social care due to my living conditions and they were meant to put in a plan and I wasn't to be discharged until that was in place. Low and behold I had 5 stents fitted and hospital wanted to discharge next morning with no care plan in place.

As it stands now I just want to die in a clean house and I am not fit to do it and have no family or friends to help, adult social care are meant to sort this. That was 2 months ago and nothing, they have done nothing. I thought the whole point of their job is to keep me out of care and at home for as long as I can. They just keep saying no funding. I have gone to Cab and the a Scottish Welfare Fund, all rejected. This isn't new, I have been on PIP for 18 months and won't ever be fit to work again.

I just don't know where to turn to get the help or funding I need. I just fell so low and upset like there is no point anymore and nobody is paying any attention to my care being palliative. If they cannot have me safe at home they need to provide care which is safe. A big proper deep clean is about £700 and I just don't know what to do. Can anyone here please advise or know of anything that would help in Scotland? I would be forever grateful to you.

Thanks

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Jwares profile image
Jwares
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12 Replies
Bicyclist profile image
Bicyclist

I'm sorry to hear about your predicament, my only advice would be to write to the top, Nicola Sturgeon and copy in a newspaper. I think then you might see things moving very quickly. Don't hold back. I hope your health and environment improves and you get the care you need.

MichaelJH profile image
MichaelJHHeart Star

Hello and welcome to the forum! I have known people get one off payments alongside their benefits. These were to clear rent arrears and to buy a washing machine. Have the council allocated you a social worker? You should have one in your position!

Jwares profile image
Jwares in reply toMichaelJH

Hi there

Yes I have had a social worker for 2 months and she has done zero, nothing, nada.

I already have a budgeting loan for a new cooker so won't get another. I tried for a community care grant as they are designed to keep you independent and out of care, refused as it does not cover that. Honest to god what is the point of them if none of them help.

Lezzers profile image
Lezzers in reply toJwares

Could you approach your local citizens advice bureau for advice?

Jwares profile image
Jwares in reply toLezzers

Hiya

Tried that and they got nowhere either. If they weigh up the cost of full time care vs what I have asked for there isn't even a point in comparing but that will be a different budget. As long as they can completely ignore my wishes to be at home and as independent for as long as I can, the happier they are.

Heythrop51 profile image
Heythrop51 in reply toJwares

I have found social workers vary enormously. One or two are so intent on saving councils money they seem to withhold information! To me that is unprofessional when you are meant to be helping vulnerable and at risk individuals!

Hi Jwares,

Have you had an formal assessment of your needs and recieved written confirmation of them from the Adults Team ?

I’ve also included a link below that outlines your rights under the Care Act 2014.

carersuk.org/images/Factshe...

Like most services these days you do have to jump up and down abit to get the services you need.

Jwares profile image
Jwares in reply to

Hi There, no idea what they have done tbh, but it equals zero in practical terms. As everything is remote due to covid you don't even get to see anyone. The only people who saw my home and made the urgent referral were the police, that was only because I was having a heart attack and couldn't get downstairs to open the door, nobody else has bothered. It is the police who said I should not be discharged until a proper care plan was put in place.

gilreid1 profile image
gilreid1

Find all this a bit strange. Living in Scotland as I do I was not aware of anyone who seeks help for an heart problem being ignored. Do you have any other problems that may have caused this ? Social care is normally prompt at responding to emergency situations and that’s who the police would contact in the first instance

Jwares profile image
Jwares in reply togilreid1

Other than mental health issues no, but I challenge anyone who is going to die in their 30's to not have mental health issues, but has never been part of social care. Social care is new following that emergency police referral 2 months ago. Highland approve nothing, it is like banging your head off of a brick wall. The best they do is give you a heart failure nurse which is frankly beyond useless. Just gonna need to write to MSP, MP and papers as well as a complaint as they have left no other option available apart from sleeping in a tent.

gilreid1 profile image
gilreid1

Ok I think you have answered my question

Good Luck

Jwares profile image
Jwares in reply togilreid1

Thank you 😊

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