Results for "Have your say: What's your experience as an unpaid carer?"

Showing the last 50 answers

I am not sure.

Impoverished and invisible

sometimes support isn't applicable because you can't let others into the home environment. sometimes it's money you need to be able to afford food light, heat, fuel and the basics. but because we have nonincome we struggle, in an extremely difficult role, to just get by. it's not living!!

No time to seek it

We're saving taxpayer's millions of pounds, so why would they want to change it?

Goverment support

No cash for the support

Information on agencies, phone lines, online advice and rights.

seen as scroungers

The Government taking more from local Councils so the support from services provided in the community have been cut & those cared for have nowhere to go & carers have much less respite. Rising basic costs mean it's harder to live a good quality of life

Not knowing what support there is.

Nobody cares end of!!!

Information is never freely given or easy to find. Access to services are heavily guarded and not advertised. Finances are stretched beyond.

Lack of respite is the biggest single strain, as well as the low amount of Carer's Allowance paid to carers.

Taken for granted by Government to save on social care budgets, this impression has to change.

Being taken for granted by the government as they know we

Lack of funding from the government, lack of education resources, lack of fundays/clubs for disabled people

Lack of knowledge and time to get things done. Financial issues too

The government

Lack of funding. Lack of empathy from government

There is so little funding for professionally provided social care

Social services basically non existent

Financial recognition

Being recognized as an important part of society that would otherwise be filled with nursing staff. Therefore costing a great deal more.

Funding

Resources

cost of caring

Lack of service,funding,support network nert networks available 24

No one recognising what a important job we do.nt

Benefit caps

The government

An economic situation which doesn't have time for anything other than profits.

Being listened to....

‘Westminster system’ does not care about unpaid carers

Funds cutting, realising that unpaid carer are saving NHS a lot of money and they should be paid fairly.

Council finances and attitudes

Lack of services funded by the council. They give me direct payments to pay carers I recruit and train, but there aren't enough overnight respite places run by the council as they closed some a few years ago, and the ones they have are always understaffed as they don't pay enough. I have to pay my carers more per hour than the council gives, which means that my son gets fewer hours care than the council says they pay for.

Taken for granted by successive governments

Nothing is provided

Financial constraints

Red tape and lack of understanding from government

Government taking unpaid carers for granted even though unpaid carers save the government almost the whole budget

We need more money to live !

No help

Lack of Financial funding for organisations therefore lack of staff to help

Not having the time or energy to get it. Pride. Not realising help is available.

Very few services

More support would put more financial strain on the government so therefore it’s not available

It's complicated and difficult when you have many to care for. DWP penalise too easily.

Money from government

Showing the last 50 answers

To not be penalised if you are caring for someone who is returning back to the country after retiring some where else.

Financial

Money

Paid a wage

To be able to receive something for their work

Pay us for the work we do that saves the taxpayer millions of pounds.

Keep paying CA with Retirement Pension

Increase in carers allowance, recognition and for it not to be deducted from those that also claim universal credit

A raise so Carer's Allowance is much closer to minimum wage.

recognition?

That we are recognised as the valuable & skilled people that we are. That the Government & public understand that we save the Country millions of pounds by caring for family d friends "on the cheap'. Carers Allowance works out at just over £2 per hour for a minimum of 35hours a week, many do much more. It also affects carers getting other benefits. We are often poorer as a result.

A respectable "wage" not benefit and people to recognise we are doing a job and given up a career in order to care for someone. We are not just sitting around on our arse.

Being paid a decent amount of money I do a very hard job which I don't get a break from.

For their role in society to be acknowledged and funded properly.

Residential respite care to allow carers a proper break from the stress of the continuous responsibilities of their role.

True recognition for their role, not just lip service

Funding& financial assistance& mental health support

Better support

More funding for healthcare

Recognition that what we do is work and the carer allowance is not a benefit but a salary for our work. After all we save hundreds of thousand £ for the government.

More recognition

More help financially access to what you can and can’t claim to help use

I'd like to see an increase in their payment to reflect on the work that they do.

More money and support

That they get compensation financially and the support they need

Better pay more support

Pay them a decent amount for the work they do.

trustworthy care and financial support

Recognition at all level's something which is lacking with unpaid carers who are so isolated in a society who expects more yet gives little support at times no support.

Living wage for carers

Finances are the biggest thing. Each carer has their own individual situation on their finances. There needs to be a fair and proper system to support carers income.

Paid and support

Recognition of the fact that they save the government millions of pounds a year. They should get paid a wage for that.

More financial support and the recognition that they are doing an incredibly important job, much more than many very well paid people.

Much more financial recompense for not being able to have a normal job, & saving the care system thousands of pounds a year on paid carers bot being needed

Get paid more

Significant increase in Carer’s Allowance.

Acknowledgement of the importance of their role

Councils to have more funding for social care, which they then pass onto those that need it most. Secondly, a reform of the carers allowance. When I was able to work, before my son left full-time education, I had to turn down extra hours as it would take me over the weekly limit. Totally counterproductive.

Increase in carers allowance. Not deducted from means tested benefits.

recognition , rather than being treated with suspicion

More recognition

the ability to work more without losing carers allowance

Increase in carers allowance to reflect the living wage

A rise in the carers allowance to reflect a real wage and for it to carry on once pension age is reached as the carding doesn’t stop

More benefits that will help us out like the NHS having the blue light card there should be something similar for unpaid caters

I would like to see society applaud them and thank them for their selflessness instead of regarding them as 'benefit scroungers'. I would like to see a lot of the urban myths the Tories have perpetuated blown out of the water. I would like to see them valued by society instead of forgotten.

Increase carers allowance

More financial assistance

holiday breaks, even a day break. A chance to sleep properly for a whole day is my dream. A chance to recharge

Showing the last 50 answers

grants for beds, chairs, insulation, car maintenance. all the things you can't do because you have no money

legal rights

All of the above but importantly to change the perception of the public about who carers are & what they do, especially Young Carers whose lives are affected a lot. ic

More respite services

I think all of the above options are important because one unpaid carer’s situation is very different to another

That CA is not classed as income, so tax free and not affecting other benefits claims

Help with paying towards medical care services.

Paid at minimum wage for 35 hours.

Mental health support and talking services

All 3 of those above , plus the emotional support , someone to bounce your feeling off. I have a mate who luckily so far hasn't told me to shut up and I can let off my anxieties too, but not all have that.

The Care Act needs to be amended to allow family carers to be paid and amendments made to the Mental Health Act and the Court of Protection to ensure greater transparency and to stop ‘closed’ & ‘private’ hearings’ where the court makes decisions without the person or their representatives knowledge!

All of the above

Changes to the rules about carers allowance which will help those of us who flexibly care

Person centred care recognition

Educate the public on what it is like to be an unpaid carer, what obstacles we are up against

All three are so important that I can't choose one

All of the above

Employees trained on hiw to understand and support

All of the above

I have to run manage and work on my sons support package employ a team and take all the professional lead for nothing ! No support no recognition .

any financial support needs to be truly accessible and simplified, maybe similar to going to the local library to register for a bus pass. There should be widespread carer discounts at national businesses and organisations, just generally more structure

All of the above

All the above, really, but many carers have been forced to give up their careers and their homes to move in with the person they care for. As such, it is important that carers have future security to look forward to for when they are no longer needed as carers (ie. when the person they care for dies). At present, carers give everything but have only fear and homelessness in their future.

Yes, all of the above

equipment, support, training, access to the management centre of my local football team, a gift of designer clothing and glasses, and somewhere for me to study for a qualification in peace.

All of the above

Any financial support would have to be protected from being removed as we are in receipt of housing benefit etc that would be lost if we were then classed as “employed”. We’d need some form of income protection.

I’d also like to see the Christmas bonus increased to reflect what it was worth when it was originally introduced in the 1970s.

Impossible to select one option, all apply equally

See above - need to allow for more money to be claimed by those caring for more than one person and also for doing just 20 hours of care a week not just over 35

Relevant health equipment being made available

NHS Secondary Carer Mental Health Service to be reformed; meet the published 13 recommendations from British Medical Association; without better support services for severely mentally ill people, more unpaid Carers will become unwell.

Need to pay them at list 40 hours week

More choice and flexibility so carers can have respite to suit their needs. More robust regulation of care companies to ensure they provide adequate, good quality support. Unpaid carers to have thesame rights as disabled people have to appropriate adaptations to their work schedule. good quality

Practical support eg shopping, recycling, contacting other services eg council.

I am an occasional unpaid carer when my 82 year old mum needs help with scizophrenic brother. The reason why we are needed is he’s relentlessly cuckooed and the police do nothing. In fact they seek to criminalise him. When my mum does I’ll have to take over f/t. He’s verb vulnerable. Thd police, social services and MH services fail to act. That would save the tax payer a lot of money of they did! And me my health and wellbeing.

Won't let me select both financial support and respite together but these are both fundamental.

All of the three options above

Employers need to allow carers to take paid time off

All three - I don't think you can differentiate.

Easier access to Care services and support, possibly a single point of access that can direct you to the appropriate service eg a 'Liasion Nurse'

To have protected characteristics and human rights protected

You say increased financial support but it would be some kind of financial support

places, activities and support for those we care for

places, activities and support for those we care for

places, activities and support for those we care for

places, activities and support for those we care for

places, activities and support for those we care for

Increased financial support AND Flexible working arrangements

All of the above.

Showing the last 50 answers

being a carer is killing me, literally. I've just had a heart attack from the stress of it and living in absolute poverty

It's bloody hard. I've never been so poor, tired and stressed in my entire life.

I have spent 28 years caring full time for disabled family members, I know poverty well and it has beaten me down until I have nothing left to give, my body is broken and my mind is not my own but there is no end in sight. My dad needs me now so probably another decade to go, if I make it.

I was part of a carers co-design project with JRF d they launched a report in July, 2023 with recommendations. Please read it.

Yes, I'm underpaid and my mental health is suffering everyday as a consequence.

The mental health and work load, particularly at times when the person you look after is ill, increases exponentially. I end up sleep deprived and overwhelmed by anxiety. People don’t seem to realise that, as an unpaid carer, you care deeply for the person you look after and when times are difficult you face a lot more trauma than simply organising your time and finances better.

It has broken me mentally, leaving me unable to cope with anything more than undemanding low paid employment.

The mental health support, the support for funding, the days out where there’s quieter hours for us and our disabled children/adults.

At a time where I should be easing up, I am still responsible for my 34 year old son

It is mentally draining and the lack of support making us isolated. The general opinion on carers is very negative and we are seen as leeches on the benefit system.

We as a family have had to exist in a situation we didn't ask for yet equally frustrating is society lack of care and duty towards us carer's who go above and beyond to ensure our loved one's are not just a statics in a very unfair and non cooperative society from the top down in all communities.

It was the toughest time of my life and I felt completely disregarded.

I'm exhausted

It's relentless, and very little support

I know at some point the DWP are going to ask for money back that I don’t have because their system paid me when I earns too much in a week

It’s hard carding it never stops

My two biggest problems are transport and having time to rest properly. I can no longer get my mum out the house alone. A wheelchair would be awesome.

I'm a carer who is disabled myself. I have to also care for different family members who also live abroad. I feel whatever I do I will get penalised. I think there shouldn't be so much risk of punishment, fines and sanctions. I can't separate myself in two or three. Also who I care for needs freedom. Who I care for also cares for me. It's complicated and intricate and the worry about DWP is always looming.

As already noted

That despite there being lots of noise amongst unpaid carers no-one else seems remotely interested in us. We save the government vast amounts of money in care home and professional carers fees. We also keep people out of hospital beds as we are able to provide 24/7 care to our loved ones

It is difficult to juggle life, cost of living and being a carer. Carers who have a little savings cannot claim any other benefits for top up so have to use all their savings to continue to provide support and continue with their caring role.

It’s exhausting and never ending

I was a former unpaid carer

Yes. That assessments by Local Authorities are too frequently ‘weaponised’ by incompetence! That is to say social service reports contain wrong, inaccurate or misleading information which takes an enormous amount of effort to identify and correct… which places an intolerable extra burden and stress on already over-burdened & over-stressed carer.

You become a carer no longer a son or daughter. Puts a,strain on your relationship with the person you look after because your stressed and tired over finances and can start to resent you loved one over t

I am providing support for elderly parents. Also child care for grandchildren

It's hell. Lonely ..exhausting. my child is severely rustic, has severely challenging behaviour, ie physically attacks when distressed...

Was an unpaid carer for 26 years for our severely mentally & physically disabled son ( no diagnosis) who sadly passed awsy 6 years ago - no improvement in all that time to the crucial role which has saved the Exchequer BILLIONS over the years .

Looked down upon as I am unable to work

It’s a role I do out of love

I feel we are not listened to.

It's totally soul destroying , watching your loved ones slowly disappearing , I come home most days and son , my mom is no longer the person I knew ,it's increasing hard to even hold a conversation with her and other people who speak to her casually don't realise how bad she is as they don't realise she just repeats herself over and over .My Dad and brother died 15 days apart having had terminal cancer at the same time .My brother was my support system ! It's just so hard now ! But heigh_no the government thinks £81 a week makes it all ok and their doing their bit ?????

Yes - I’d do it for nothing but don’t tell star man that

I'd love to but too drained.

The lack of acknowledgment and action to protect people from covid makes being a carer even more difficult. I cannot even access any support in person because the risk of re-infection for my cared for is too great. Also i cannot risk being infected myself. The government needs to priotise this as it jeopardises so much support and care for the most vulnerable and their carers.

We don’t ask for much just some recognition.

Whilst my move for my mother is not strained, everything else is.

It's hard lonely work

Loneliness, lack of compassion of people.

It’s time the government listened to unpaid carers.

Just would like to see more help for applications for POA and deputyship. Also energy companies being compelled to reduce their charges for vulnerable adults and children as well as local authorities making it easier to get SMI recognised.

Linely

Left alone by services , blamed by services , made to feel like a criminal and a beggar by services

It never ends no matter how unwell I am

Am an unpaid carer to not 1, but 3 elderly and 1 pre school age. Time at home is a

It’s exhausting and I’m often left feeling hopeless and resentful which is not the fault of the person I’m caring for. It affects my family time and my mental health is in pieces.

As an unpaid cater for a severely visually impaired relative, she receives attendance allowance which she needs. It certainly wouldn’t cover what I do to help in fuel alone. Let alone loss of earnings or being able to hold a mainstream job and hrs down. .

Yes. Its a life sentence for an uncomitted crime.

Yes. I have two children who have additional needs. They have a HR care award. And yet I can only claim carers allowance once. There’s no space for me to work! No way to increase my income. And yet the work I do, the strategising, advocating, meetings, would bring a high salary in the employed world - I know this because I had a job that involved a lot of this sort of thing & was paid well!!

Carers need care too