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What about us? - Caring issues on TV today - Page 2 - Carers UK Forum

What about us? - Caring issues on TV today

Discuss news stories and political issues that affect carers.
Can anyone tell me where I can see 'what about us'. Its something that's angered me for a long time looking after my mum full time and financing most of her personal care because social services have reduced her money down to virtually nothing. I remortgaged my own house so I could raise the money to pay someone to come in and shower my mum. I am living off £50 a week and caring full time 24 hours a day, 7 days a week no breaks and yet the government should be paying me. I am happy to do what I do but we all have to live right and it seems all wrong to me that the person who gives up their work and takes on full time care doesn't get anything and the visiting carer gets paid. Its time the family were employed and paid to look after their loved ones and I'd like to watch this program if possible Many thanks

Can I ask a few questions about mum and her care?
Own or rent her house?
Over £23,000 in savings (Yes/No)?
Do you have Power of Attorney?
Hi Bowlingbun, I was wondering if anyone has seen any info re the UK primary care transformation plan, which is becoming more widespread in Scotland now, with major changes taking place across all sectors. Yet I don’t see much on TV or media about the changes which will impact on all of us, many of which seem in experimental stages. While people with mild to moderate health problems may benefit in some ways, I am left wondering , after my recent awful experiences with elderly parent, how people with frailty who are not coping at home and older Carer’s or sandwich generation Carer’s Will fair in these reforms. What contingency plans will be available for people who are clearly struggling to continue to manage at home, (or not identified until crisis)yet can’t be admitted to hospital or convalescence facility due to lack of places available and funding cut backs ? It seems that rapid response teams and advanced nurse practitioners will be doing home visits instead of GPs and trying to prevent people from being admitted to hospital. On one hand most people want to stay at home, but in reality people may not get the care they need and dying at home without a full back up of care severely impacts on Caree and Carer’s yet again. I think that the role of a carer is sadly grossly underestimated and not everyone in older age can be cared for at home. For example in advancing dementia plus mobility issues which are huge stressors for Carer’s in terms of ongoing safety issues at home. Although massively upsetting I finally accept that my mum is better in a care home, yet it has taken the best part of 10 months to even start to think about rebuilding my life and the stress is ongoing. However I know I would have ended up very unwell and unable to continue caring if I didn’t instigate care home after many difficult years of caring. There is still a price to pay in terms of financial cost, but health care needs to come first. As many Carer’s have said on the forum, if Carer’s stop providing care, then the current system would be even less able to cope. I think we need specialist frailty units or more good old fashioned statutory community hospitals for convalescence/ respite care as well as more affordable care home places. How can we have personalisation and choice if the resources aren’t there?
Are YOU paying for mum's care???
Hi, Bowlingbun, No, I don’t pay towards care home directly. It’s all the indirect things like extra travel and we shared some household expenses, as we lived together, which is difficult now as I only work part time. However, mum pays a significant amount towards her fees, which I know is standard practise. I still take her out for lunch a couple of times a week, and am trying to focus on appreciating our time together. Guess I have to try to make the best of things now.
bowlingbun wrote:
Tue Feb 18, 2020 8:33 pm
Are you fostering your brother? It's really important that you have a formal arrangement for his care.
If you live in a flat, his disability should give you priority on the housing list.
Ther is the Florence Nightingale Aid in Sickness Fund, which pays for various things that the state will not. Google them. The name I've given may not be exactly right, but Google should find it for you. Now he has DLA, you can claim CA as long as your income is under about £120 after deductions etc.
Thanks. Apology for the delayed response.

I have never heard of them. My income is very low. Who do I talk to? I’m going to email them on Monday to ask for more details. And yes we do have increased priority on local housing lists. I have checked. What sort of things will they pay for? Is there a website or not?
Thara, long ago I started a charity for anyone who had a special needs child. It often took years for a diagnosis and during that time, very little help was available. We had a lot of fun, the charity is still going strong 30 years later, and I'm still in touch with many of the mums I met then.

One of "my" mums had a child with Down's Syndrome who needed a special piece of equipment not available on the NHS or via Social Services. I found out about this fund, and referred the mum concerned. Someone else has to make the referral, a doctor, social worker, or similar.

They provided what was needed, and wrote to me afterwards, thanking me for the referral and asking if I knew anyone else who needed help!!!

That was all 30 years ago, but I never forgot their kindness. To start with, Google them and then talk to them.
What is the name of the charity?