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Q&A for our helpline experts - Page 3 - Carers UK Forum

Q&A for our helpline experts

Carers UK staff will post regularly here to share our work and invite discussion. Also you can post questions for our expert panel to answer on Carers Rights Day - 25 November
I live in Wales and am an unpaid carer for 2 family members, 1 lives 10 miles away, the other lives 26 miles away. Carers Allowance is only paid for looking after 1 person and it doesn't even cover my fuel costs let alone maintaining my car.
So I would like to know why unpaid carers receive such a pathetically low allowance, who decides how much it is and why do Scotland receive extra payments when England And Wales carers don't? Lastly why is nothing being done to get the allowance raised or to ensure that the extra payments are payable to all unpaid carers not just those in Scotland - no campaigns, no questions asked we just accept it?
Preparing myself to become fulltime carer for both parents in the very near future. Some of my questions have already been asked:
- will social services assessments take into account that in caring for dad as the first parent to decline, that mum lives with him and I'll need to simutaneously give her increasing care too (both in their late 80's)
- someone else raised this too... guidance for those of us with parents who are above the £20k cap (i.e. where do I begin if I can only use private sources of care help, it's a bit frightening that these sources are 'commercial')
- how much might GPs & practice nurses help or do they have limited assistance
- general thought: feeling very frightened about when I become full time carer, will have to move in with my parents, give up my job, rely solely on our savings...frightened of savings depleting fast and I and parents if still alive end up with nothing. If we then have to sell parent's home, how do we survive with additional costs of paying rent to live somewhere...it feels like a frightening catch 22
Thank you and looking forward to this event. Kiki
I can't do zoom, i am a long term disabled carer still sat in tears years later.

Please, care has failed me and my disabled partner for years now, and is still doing so. I am beyond the end of my tether. I have never been able to do the physical side but caring 24/7 for organisational side,day to day running of the home, ordering all the food online, managing the money and paying the bills and emotional support takes the day up, especially when you are by nature of your own health needs, slow, very painfully, slow. Please ask them why agencies are allowed to fail us, to insist we have care at inappropriate times for our health needs or go without and us blamed as 'not engaging'. Why they and also on direct payments too, that are supposedly being managed for us are just being 'seen to do something' that actually does nothing. Why they cannot understand why your health breaks down, why your mental health is then affected, yet you cannot do this for yourself. Why incorrect things that don't even make sense against your medical records can be placed on your care plans and record and not be taken off, just left there and accepted as professional to professional rather than the truths we speak? Why my care needs do not matter, why I am dreading having to go into hsopital with him left on his own with the care breaking down, without the pandemic? I don't want to do anything exciting, just have support to attend my own health appointments, time to look after my own care needs, and able to rest. That's it, no grand holidays, not had one since 2002 and not bothered, but enough left in my body at the end of the day for me would be nice, not night after night racked in pain, still trying to order food at gone midnight before all slots are gone the whole 2 hours when care is actually due here to help. To see my elderly Mum for the first time since being left housebound in 2016, who is in a care home, when juggling her health and my health and time for a carer to be on duty to take me against their health needs too. That alone is like juggling cats. Why the NHS is failing the housebound too? Yes, we more than anybody know they're over stretched but surely getting continually forgotten that we are here and housebound and cannot get out for the flu and covid jabs means something despite having checked up about it? When is anything we are forced to rely on ever work again please? Who's problem are we when we have nobody else for things last minute to be dropped back on us or go with out? I already have to keep trying to find reliable private paid care for everything done in the home too and it is same, fails us regularly. I have forgotten what it is like to feel clean, cared for, and not just a burden to the system to be buck passed department to department everywhere and with everything. Yet I used to do it all myself, and help others until I ended severely disabled too. We are called a clash of benefits, officially uanble to work and correctly so, yet still forced to have everything dropped on you or to go without what you can no longer do yourselves. When will this hell on earth ever end please? What hope please can anybody give to any of us any more?
Please can we find out why us unpaid Carers who are unable to work full time because we care for a loved one, are so under valued that the pittance we can claim to look after someone who has complex needs?

When is someone going to place a value on us.

Someone did mention about all the focus on young carers. I agree. Why are there so many schemes, grants, opportunities for them yet when I had to reach out for counselling that service alone had been taken away. Why are we not valued as carers like young people are?

I’m disillusioned with the whole system.
I have a question about the definition of "lives with" in direct payment regulations.
Hampshire say they cannot pay me to care for my son, who lives in his own flat, because in their opinion he is classed as "living with me" when he's home for the weekend.
My son has severe learning difficulties.
From the age of 6 weeks old he spent most summer weekends at a steam rally with our steam roller or traction engine.
All the local steam fraternity know him very well, and he wants to go to rallies, and work on our engines.
Sadly, my husband died a few years ago, and I can't climb onto the footplate any longer. Really sad for me. When the children were babies i used to drive on the road with a baby on my chest in a babysling! I even have two awards from the National Traction Engine Trust.
Social Services make absolutely no provision in his plan to be supported by someone knowledgeable. My son has said clearly he doesn't want on of the female care staff to take him to any more rallies, they are not interested. They've even taken him to Swanage, where he wants to go on the steam railway, but gone to the beach instead!!!
I believe that if the council can't find a suitable PA for him, then they should pay me.
How is "lives with me" defined in the legislation???
I retire next year and have been advised by the Pensions Department that I will no longer receive carers allowance as it is classed as an overlapping benefit.
Surely Carers allowance should be a stand alone benefit.
I wish to raise what has become a very serious issue.

9 years ago I gave up my business, rented out my house and moved to Wiltshire to single-handedly look after my mum as she was disabled and had complex medical needs. I looked after her for 9 years, through thick and thin. I never claimed carers allowance as my mum had 2 pensions and it would have meant whatever I got would have been deducted off her pension.

Instead I lived off my mum's pension and I had about £50 a week left over from renting my house as I had a very large mortgage and all the fees that private landlords are subjected to. After 9 years of care my mum sadly died recently and I'm bereft. I am still living in her home which is going to be sold as her wishes were that we would split the money between 6 children which means it won't go very far as there are costs involved.

While I looked after mum I improved her house put in an accessible wet room and a walk in bath, I also adapted much of the house to make everything easier for her and this enabled her to have a quality of life that was only possible due to my vigilance and care.

I've started thinking about what next? and 9 years on age 63 I can't just step back into my old life. I no longer have the earning capacity to go home and pay such a large mortgage. However to my horror if I sell the house I will be subject to almost 40% Capital Gains Tax meaning I would have nothing over once the mortgage is cleared. Unfortunately the golden years I had looked forward to will be all snatched away in tax and could even leave me homeless.

This new law changed in 2020. Before as long as you returned to your home for a minimum of 9 months all tax was removed, that is no longer the case. Also if I'd only done it for 6 years then that would have also exempted me. However, my mum lived for 9 more years meaning what was I supposed to do.

I would really like CarerUK to look at this law which should exempt anyone who relocates to look after a loved one. This will prevent a lot of people going away to look after their elders and because this law is so new I don't think many people are aware of it.

My question is what can Carer UK do to help me. My life has been devastated into a million pieces since I found this out and instead of being able to enjoy my bit of freedom I'm not only coping with a devastating bereavement but as my life hangs in the balance I feel I have been cheated and robbed by our government. I know I'm not alone and I also know a lot of people won't even know that this could apply to them and we need to do something about it and treat it like an emergency.

Thank you
Joy
Hi
Looking through some of the post and one thing is blindly oblivious.
It needs to be brought into law that care plans and continuing health funding should be better managed and made easier and more accessible for people that need it. Better training and understanding of the law is needed for social workers hospitals and community care workers. I’ve lost count how many times I’ve personally being fed the wrong information but it seems the people involved are often allowed to shrug there shoulders and get away with pretending they don’t know, whilst the people that need it have neither the time or the ability to chase it. There needs to be a clear and defined action plan and go to person for the people in need. Perhaps if some of the staff that don’t stick to the rules were held personally accountable they would be more inclined to know them and follow them?
I would like to suggest a new section on the forum covering "Moving in with mum / dad" and "giving up work to care".

Having cared for 10 different relatives in various ways over 42 years, I know what a complicated issue this can be, and how many members are affected, and let's be honest, lives ruined.
One simple question
Carers UK could have done something about carers allowance many years ago but has not....
Why???
Is it because it's not in their interest.....
Carers staff should realise you could be in our situation one day and then you will wish you done something !!!!!