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Q&A for our helpline experts - Page 2 - 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
Hi There

My young son had an accident in 2016 which led him to have a stroke. I have worked for same company for over 23 years. I had to cut my hours down dramatically in order to care for my son. He had to have someone sit with him while i went to work.

When i checked with Make the Call to see what we would be entitled to they told me very little. As i am a single parent i could receive Carers Allowance and work to earn very little. This is so unfair, people in life are in all different situations and it seems there is nothing to help the Carer who is on their own to fend for themselves.

We have to live on very little now compared to before my son had the accident.

Should there not be different availability for people with unusually different circumstances.

Thanks
Hi,

I’m new to this platform and forum so have a few questions. I don’t mean to be negative but I’m at the end of my tether and don’t have any support at all. I will use my case as an example but is not just me locally…I moved back to uk from Australia to care for Mum post Brain tumour.

1) Where is the actual support for neurological carers?
There is so much focus on young carers, or those needing physical needs to be met but non existent support for brain injury needs. Mum can walk 12 miles daily, dress, wash herself, cook and clean but would walk off a cliff and struggle to throw out rotten food, do admin, paperwork. I have to be with her most of the time and no services to assist here. When do I get to have my life again?

2) Why do carers have to struggle first to receive support? Why can’t it be prevented and provide care and support in anticipation?

I screamed out for help 8 months ago and yet not one person has cared about my well being or offered actual support. I have so much reading material and signposting to services that don’t help. Mum is thriving and getting her every whim met but I’m now broken and lost everything.

3) Who actually implements carers rights? Right now I’m lucky to eat and sleep let alone have any needs met. No one is checking in on me or my well being.

4) why is it a postcode lottery for carers support and support of those they care for?

5) where/how can you get respite for carers - meaning somewhere to go for a break to decompress and have space to breathe?

6) why are administrative additional support services not extended to carers? eg the tax office extra support line refused to help me to deal with my mothers affairs 6 times on her behalf (as she received undue penalties) and so I have to either write to them or go through a tax agent instead.

7) why don’t all the support systems work together? I’m so confused which carers organisations or online forums or groups are which and how they actually help. There is so much paperwork and admin or signposting but no tangible support (at least not that I have found)

8) what happens if I can’t/don’t want to be a carer anymore? I’m exhausted and didn’t sign up to lose my life in the process. Who cares for Mum if I can’t?

Many thanks
How old is your son?
Has he had a Needs Assessment from Social Services?
Have you had a Carers Assessment?
I would like to know whether, with direct payments, the rules for use are decided nationally or within one's local authority? How much can local authorities limit the use of the payments? It seems to me to be at the discretion of one's local social services team and that can be far more limiting than the national rules. To what extent, and how, can one challenge these limiting local decisions? I am the mother of a young man with CP and successfully employ/manage a team of carers who come to our home. However I often come up against debilitating and unempowering local decisions about how I spend the direct payments (which my son cannot do himself as he has ld and doesn't understand finance. ) It is not assumed as I feel it should be, that I know what is sensible and logical - I often have to pay thousands back unspent.
Hi
Hospitals have staffing shortages and are discharging patients as quickly as possible. There has been a lot of discussion about community nursing being understaffed and overwhelmed by the amount of people that are being discharged from hospitals too quickly. I’ve now read that to overcome this they will start to encourage and train family members unpaid Carer’s to do some tasks to take off some of the stain? Is this true? As a carer my experience is the NHS in whatever form is unable to provide adequate care to keep my husband safe or well and it’s the unpaid Carer’s that are keeping the NHS going When will our worth and experience be recognised as such?
I'm living in Wales and a full time, unpaid Carer twice over for two family members.

What would be your advice for a Carer where Social Services write Care and Support Plans for one person with no input from anyone but themselves and where they say that because the other person's issues are all Mental Health related they aren't responsible for anything related to them and so the Carers Assessment is only covers the family member they're already involved with?

This is even when the relevant laws have been pointed out and they've been asked what they would do if I couldn't continue my Caring Role (to which they insisted that the second person still wouldn't be their responsibility)
Why is it that adult car situations are automatically judged as being one of the main disabilities I.e. Dementia, There are other disabilities out there some of which have a rareity. How’s about for Carers day recognizing that some Carers don’t fall into the main catagories.
Hi,
My son is 28 he is severely disabled, wheelchair bound 100% dependent on others for all of his care, I’m his mum and also his main carer. I have direct payments from the local council to pay for 2 full time carers as I’m disabled myself nd have had cancer.
My son has been in receipt of direct payments for 10 years, this year however our local council have decided to take into account my sons pip payments in his income assessment, deciding his disposable and now charging my son £122 towards his care.
Apparently all councils in Wales have the opportunity to use a loop hole in the law to do this, however not all of the Welsh councils are doing this only mine in Bridgend!
I do appreciate that it’s my choice to use direct payments rather than let my son attend the local adult centre, which I felt wasn’t suitable for his needs.
I also appreciate that all councils are having problems with regards funding and provision, but to effectively stealth tax a persons PIp is unbelievable. I use the PIP payment to tax, insure, maintain his car, which his carers use to take him out and about now that he is allowed out. Plus it’s used to pay for Incontinence products and payment towards the extra heating that he needs.
£122 a month is a huge chunk of his money that has to be paid, is there anything I can do about this, is there any help I can have?
Thank you
Nicci
could please tell me if our government is considering abolishing the tax levied on carers allowance, thank you
I would like to ask about the coucil tax reduction in Scotland which requires someone to be "severely mentally impaired". The criteria for this on the council website is very wooly and when I asked the GP about it she made it very clear this was a decision that she would make and she certainly wouldnt be explaining how she came to that decision to me! I look after my husband who has significant mental health problems which has meant he only just manages to work at home 2 days a week in a hugely reduced type of job with significent support from me. So he has a condition which has severely impacted his life in every way. The doctor decided he did not fit the criteria but did not explain. I know someone in a similar situation and her psychiatrist happily signed the form and she gets a reduction. It seems it depends who you ask as to whether you get it or not..?
If the panel could explain how this works at the Q+A session please I would be veryt grateful. Thanks!