Government announces £400 million for carers’ respite breaks

As part of its new vision for adult social care, the government has announced £400 million to be spent on respite for carers through the NHS.  This amount will be spread over the next four years allowing those who care for vulnerable family and friends a break for themselves. According to the plan, the state will also arrange a paid carer for the duration of the break.

Included in the same vision, is the plan to introduce “personal budgets” for everyone by 2013. Personal budgets will give people more flexibility in terms of choice and control over social care services received. Carers will be able to tailor services to meet their specific needs including taking respite breaks such as holidays or hobbies.

Announcing the funding, care services minister Paul Burstow said “The Coalition Government’s vision for social care will deliver on our manifesto commitment to provide guaranteed respite care by making over £400million available in additional funding over the next four years to the hundreds of thousands of carers who work over 50 hours a week.”

In emphasizing the importance of a well-earned respite break for carers, Burstow said “We will also go further than ever before in ensuring carers decide themselves what they want to do to take a break from caring. This is why we are ensuring that breaks are delivered through direct payments or personal health budgets”

The Princess Royal Trust for Carers has welcomed the £400 million for respite breaks but warns that it might not be used for its intended purpose as it is not ring-fenced.

Chief executive Carole Cochrane said: "Without these vital breaks, carers can often reach breaking point where they can no longer continue, and their own physical and mental health deteriorates as result.

"However we are concerned that the money in today's announcement has not been ringfenced, as in the past, money earmarked for carers' breaks has been spent elsewhere.

"In 2009-10 and 2010-11, GBP150 million was pledged for carers' breaks, but our research found that most primary care trusts failed to spend the money on carers and instead used it elsewhere."


I have concerns as the last

I have concerns as the last money given to health for carers breaks never came forward until it was challenged as it was lost in there error

I thought that the new

I thought that the new funding foe carers breaks WAS ringfenced?

I am a carer and I care for

I am a carer and I care for someone 24/7. I have asked the Social Services many times for help with various issues without any result.

I am Diabetic myself with poor health and I desperately need a break. I feel that I might never achieve that break with the difficulty I am already facing in getting any help.

What I want to know is how and who to ask for that break as the person I care for does not get the care package. I care for them myself and they live with me.

Hi Tamara Just wanted to let

Hi Tamara

Just wanted to let you know that you are entitled to an assessment as a carer (despite the person you care for not being entitled to services) - they may not provide you with support - its at their discretion i think - but sounds like you need it, so contact your local social services office and request a Carers Assessment. Or, I have a feeling you can fill in an assessment form on the Carers UK website.

Hope that's helpful and good luck!


That is very good news! I've

That is very good news! I've been a full-time carer for over ten years, and have never taken a respite break. I hope we will be informed of our entitlement.

Very good news. It's about

Very good news. It's about time the carers got looked after. By the way, will this be means tested? Every thing bopils down to money. If you have been prudent for you old age you are penalised.

Exactly as you stated. I got

Exactly as you stated. I got to breaking point last December. Lead Psychatrist decreed my husband, (has Alzheiemrs with challenging behaviour) must take Arripiprazole, not licensed for Alz. as a calming potion. He had to change nusing homes. New home very quickly, as he was awake, and wandering at night, recommended Zopiclone - hypnotic. He sleeps, sleeps and sleeps more in daytime. Will psychiatrist listen to me - I got all the info from MHRA, and BMA book which lists all drugs.Anti psychotic can cause incontinence and caution should be exercised if taken with Zopiclone. They actually name the hypnotic medication. Jan 2009, as he was displaying inappropriate behaviour as well, the then psychiatrist added Sertraline 100 mg a day.

Last week, my G P,- having sent me for chest x ray, several ultra sound scans, doppler tests, breathing tests, even reckoned I had Polymyalgia Rheumatica when I had awful leg pains - decided I should take anti depressant - Sertraline 50 mg. Leaflet, said can gradually increase to 100 mg. It also gave me a bigger shock - this potion can have side effect of producing incontinence!!!! My poor husband was prescribed the higher does straighaway. Then the antipsychotic was added. Will anyone listen to carers.He has soaked through three pairs of pyjamas every night for over a year, and his bed linen. Will they listen and change medication...NO

Had fall last Thursday evening, G P decided to send him for x ray as suspect fracture. He had hip replacement April 2008 before entering full time nursing care in September 2008; by March 2009, was hospitalised, unable to weight bear, and after loads of tests, diagnosis was that new hip joint was now loose - he had had so many falls in that "CARE"???environment, while being charged nearly £4,000 per month, plus another near £90 for pads!! G P, could anyone believe, did not know how to call ambulance, so had to returnt to surgery to delegate someone else to call them. She saw my husband around 12.15 p.m., ambulance arrived at 5.45p.m.! and he got to hospital 6.45. She gave me another shock - on her letter to hsopital she wrote details of fall, and request for x ray but then added Hip replacement 2008, followed by capital letter "R" in a circle. Only problem is, he had his LEFT hip replaced in 2008 not the right!!!! Is it any wonder I suffer from STRESS. I was prescribed steroids in May, made me suffer breathelssness, G P insisted not pills. I know it was. From mid August, when I insisted he stopped steroids, I developed elephantine legs and feet -
terrible oedema, like I have never ever had before.

Fed to the back teeth with G P's, not sorting me out, I went to Herbalist on Tuesday. He says I have so much muscle tone - I thought he meant I was some sort of wonderful athletic type person. Not so, My muscles are so tense they are basically restricting my veins in my legs, preventing correct flow and return. I was prescribed surgicla hosiery by hospital. Today, wanting to get feet into Wellies to go to visit my husband, I put them on again, though have not been wearing them regularly. The pain increased, I was basically crippled. After phoning herbalist tonight, he advised me not to wear them again, because they are working against me too. Not only is my muscle tone pressing on my veins, but the stockings were adding to the discomfort!

Wrote letters to G P she never replies, she made appointment to see me on 29 October, when I went to the nursing home, and waited from 11 a.m. to past 1.30 p.m. she denied that she left message wtih nurse the previous week to tell me she would see me on 29th. She takes weeks to issue prescriptions. Nursing home has service users with scabies! She has kept it all under wraps. Did not issue prescription for weeks, while resident scratched bimself to bits and has bleeding arms now. We want her struck off. Can you wonder I have excess muscle "tone" which is STRESS related.

Psychaitrist on 6 October said she does not talk to relatives, we have to talk to staff at Nursing home who are caring for husband. I pointed out we look to her for support, only to have her retort "there are loads of carer support organisations out there, you can contact, Stupid woman - up flew my stress levels again. The carers support people cannot give medical information about our loved ones. Never before have I exited a meeting, but I was obviously getting nowhere with that woman. She advised she is retiring soon .....I hope very soon, sooner the better.

I have no interest in any housework, or even hobbies thanks to all the professionals who continue to tell lies, refuse to take us into the care plan - though Carers strategy says they should. REsult....we hit the dust ourselves.


Dear Elsie, I am so sad you

Dear Elsie, I am so sad you are having such a horrible time of it with all of these problems and no help forthcoming, I have Fibromyalgia and look after my younger sister who has Downes Syndrome, my problems are nothing like the scale of yours and have no solutions to offer but in the frustrations of living with someone who chooses not to communicate altho they do so with everyone else, who pretends they cannot hear me and makes me either repeat myself over and over or else shout which has ended up in me loosing my voice so I can no longer sing properly, something I have always loved doing, this while I am in constant pain and always exhausted from Chronic fatigue syndrome, I can in a little way understand what you are going thru. I too have asked for help from Social Services and from The Princess Anne Trust and received no response and there's nothing worse than not being replied to it make you feel such a non person. I hope and pray that your situation changes very soon, I remember seeing someone I knew, many years ago, struggling in her relationship with her disabled sister, at that time our Mom was alive and I had a great friendship with my sister, but I prayed that I would never be in that situation, sadly it was only a year or so before I was precisely right there when Mom died from melanoma. I still love my sister very much but there are times when I wish she would dissapear and I could go back to being me instead of X's sister or carer, I was 31 when she came to live with me and now 30 years later we're still together. I often wonder what my life would have been like if things had been different but Love is for better or for worse and as you are still looking after your husband even tho you could presumably have walked out at any time that there is love there still for the man you married, you have my greatest admiration as I'm sure others would say as well and it would seem that in being a carer, then the goodness of that, what is after all a sacrifial act, has to be its own reward until we hopefully find out differently at some future date.I hope in all this you have someone who can give you a hug now and then, my sister for all the frustrations she can cause me will now and then come and give me a hug and tell me she loves me really and that rainbow can make things not seem so bad even for just a short time. I hope its ok with you that I will include you in my prayers. God Bless xxx

dear dear lady..... by the

dear dear lady.....
by the time I finished reading your letter I had tears in my eyes. tears of frustration and anger and sadness and understanding. I am actually disabled and fought for a care package so my children ( my husband left when they were small) didn't end up as carers; I insisted even when they became teeenagers that i wasnt having them as carers cos I have seen how much
.stress goes on them when the carers go and we are alone . I have also been a carer for a few months to my sister who is extremely unwell and after a meeting after social services one day i felt something physically click in my head...i woke the next day and my legs didnt work properly. so i had had a relapse....dear lady please if your husband comes home again...ask for him tohave a care package put in place. I was assesed as needing 37 hours...this means my teenagers can get on with a realtively normal life because they dont have to do that part of life which goes over that line.
you sound like a are....wonderful but we are supposed to share the load in big familes..its not right you are alone so please consider getting a care package assessed by a social worker. with my 37 hours iu em ply 3 people and you hsve help tgoset it upolllthen at least you can have that 37 hours off doing your own thing.
I remember the stress when i cared for my sister she was in agony she was angry;;; always at logger heads wuth d9cs etc. i think it was as much thr professinals that caused my relapse than caring for my sister xxxxxxx

i send to yo0uo as much love as i can muster but please if you caryy on carer insist ib getting a care package for your husband love


Is this assuming a vulnerable

Is this assuming a vulnerable adult is eligible to meet the criteria for continuing health care. Because the person who I help care for is so well cared for he has no nursing needs therefore he does not meet the criteria because he has no pressure sores. Carers do not earn the right to respite care they are entitled to a break from what is the most rewarding job, but also the hardest. We do not have days off, or weekends. We rarely go on holiday, well we do but in our case we take a young man who very disabled. We do not do 8 hours shifts or have bank holidays. We provide care to someone who is loved and very much part of the family. In our case the person belongs in the community where he will continue to inspire people. tomorrow he will make me want to do better than I did today and to achieve our objective.

As a carer who has provided

As a carer who has provided round the clock care for my quadriplegic husband for many years, this sounds like excellent news. I particularly like the comment that "the state will also arrange a paid carer for the duration of the break." It would be lovely to think my husband was being cared for in our home by an experienced carer while I was enjoying my respite! Finding a safe, suitable respite care home for him over the years has proved to be a minefield. Unfortunately however one paid carer would not be sufficient for some daily activities such as showering, dressing and hoisting.
I also share Carole's concerns that not all the money may be spent as it ought to be as it is not ringfenced for respite purposes but it is a step in the right direction.

£400million for respite yet

£400million for respite yet some councils are charging for the Mobile Emergency Care Services starting 1st November

I have been a carer for my

I have been a carer for my son for 12 years now.I am still in full time employment.I have never received any carers allowance,not that i want to i would rather not be in the position i am.I say this because I feel i have two full time jobs,one being 24hrs a day.The problem I have found over the years is when you do apply for a break you are told you can only have one,so I have been lucky and had two,and this was for a two night break.I am speaking for a lot of carers in my area and we all volunteer in our spare time.I do hope the government will eventually bring in an individual payment to the carers and only then will we have what we deserve.I hope i speak for all carers .

Sounds like good news to me!

Sounds like good news to me! As a carer who has provided round the clock care for my quadriplegic husband for many years, this sounds like excellent news. I particularly like the comment that "the state will also arrange a paid carer for the duration of the break." It would be lovely to think my husband was being cared for in our home by an experienced carer while I was enjoying my respite! Finding a safe, suitable respite care home for him over the years has proved to be a minefield. Unfortunately however one paid carer would not be sufficient for some daily activities such as showering, dressing and hoisting.
I also share Carole's concerns that not all the money may be spent as it ought to be as it is not ringfenced for respite purposes but it is a step in the right direction.

Why doesn't this government

Why doesn't this government learn the lessons of the last one. If this carers money is not ring-fenced then it will be used by the NHS for other purposes just like the last lot was. I have been a carer to my tetraplegic husband for 39 years and whenever I need a break (yes, I do have them!!!)we have to go through the dreaded means test. I took direct payments and was awarded 50% continuing care but the social worker made a mess of our financial assessment and added on extra money which we do not receive(they even took into account my old age pension. Our respite money was cut from £600 per week to just £345 and trying to persuade them to alter the assessment is like hitting your head against a brick wall. This money that has been promised will be swallowed up by the black hole that is the NHS and nothing will be done to help carers take a break.

At last it seems that there

At last it seems that there is someone who has identified the desperate need out there, lets hope that it is fully funded and not too complicated a procedure.
I have been involved with Care Work since 2001, and have worked in various places, I am now currently employed as a Community Support Worker.
Are there enough Respite Centre's for people to be able to go too, that will fully cater for their individual needs.
I say this as I am involved with a Charity in Dorset just outside of Poole, called Holton Lee, it sadly had to partially close its Respite Service and make all the staff redundant due too insufficient usage, it is a beautiful place overlooking the Purbecks and on a lovely 350 acre site.
I think that it can still take people if they can come with there own care and be Self Catering, but you would need to check that out with them.
You can view their website at
Well worth a visit if you want a peaceful and tranquil break and enjoy the beauty of nature.
There are also a couple of Self Catering Cottages available for rent.
Do hope you can browse and give some feedback.
I was priveledged to have worked there as a Care Assistant for five years, a truly wonderful place to go and enjoy and see God's wonderful creation

What I need to know is is

What I need to know is is this respite for all carers including people who are caring for somebody with a drug or alcohol problem and Kinship carers, family members caring for a child/ren for whatever reason?

Hello, As a Carer I am

Hello, As a Carer I am utterly upset and annoyed as I am not allowed a penny more and nothing extra. I get £53 per week carers allowance which is taxed. This is awful. Not only this but I will be having an operation soon and have no one to give me the care that I need or my husband needs here at home. Having had a carers assesment done. My Husband is 63 and does nt want to go into restpite as we have our dogs.I cant even get a break, not that I mind not even a voucher that I can use say on a treatment for my self. I am very upset about this and simply dont know who I can ask for help . Regards amandah

my mum cares for my step

my mum cares for my step father who had a brain hemerage 4 years ago and has needed 24h care ever since, i help, my friend who is also a carer told me that my mum could receive a break but we don't know how to obtain this or even where to ask?? cheers

Hi just reading your letter

Hi just reading your letter makes me so sad. Please continue to fight for your rights. Please get on to your Local Mp and also the adult social care team. I am going to pester our lot till they give me a voucher as well. I too have been a carer for 21 years and never had a voucher or anything so that I Amanda, can get a treatment say for reflexology. Good luck and dont give up regards amandah

I am a full time carer for my

I am a full time carer for my husband. He has recently had a stroke and as a result is in hospital. As a result his DLA has been stopped and I have been told he will have to reapply when he comes home. I had a carer's break a couple of years ago but on applying this year was told I couldn't have it as I had had a break in the last 2 years. I have fibromyalgia, diabetes and depression myself a break would have been so helpful. I don't know how we are going to manage once my husband comes home as he will need 24/7 care to start with and I am struggling to get a care package put into place.

Hi Elizabeth, We're very

Hi Elizabeth,

We're very sorry to hear about how challenging things are for you and your husband - life can't be easy for either of you at the moment. And it must be so very difficult caring for your husband full-time when you're not well yourself.

You mentioned struggling to get a care package in place and we wondered if you'd thought about getting a hospital social worker on the case before your husband's discharge? That's one way of making sure you're happy with the package of care (including arrangements for respite) before you agree to your husband coming home.

Sending our very best wishes to you both. Please take care Elizabeth.

Online support team.

Could someone please tellme

Could someone please tellme the difference between Pension Credit and Pension credit Guarantee. My mother looks after my 100year old grandmother who has dementia. My mum has asked about restpite care for nan and they have told her that if nan gets Pension credit guarantee she will not have to pay for any restpite care but if she gets Pension credit she will have to Pay which she has been told will be upto £500p.wk and if nan can't pay it then it will be mums responsibility! My Nan has always worked until she retired and paid in full NI as she was widowed at 40ish and never remarried.She does not own her own home and has always lived with my mum.

Hi Lynn, We're sorry to hear

Hi Lynn,

We're sorry to hear about the challenges your mum is facing in trying to arrange some respite care - we can imagine this is adding to what must be an already stressful situation.

Unfortunately, we're not able to give you direct advice regarding benefits. This is partly because we don't have any expertise in this area and partly because the benefits system is incredibly complex.

We wondered if you've been in contact with a local carers' centre,though, as they may be able to help you with this. If you're not sure where your nearest carers' centre is you should be able to find it here: - someone there will hopefully be able to advise you further on this.

Also, you might find it helpful to have a look at these two websites for more information about pension credits:

We hope this helps a little and that you're able to arrange for some respite care soon.

Best wishes,
Online Support Team

I have been caring for my

I have been caring for my wife with early to mid dementia for about 5-6 years and am now desperately in need of some sort of break but with my wife. All who know her say that she would not benefit from placement in a nursing home for a week or so and that her condition and awareness would almost certainly. So I am searching everywhere for some accommodation that would take us both, accomodate her wheelchair as well and also provide some sort of caring for the early morning rising and dressing procedures and the reverse at night-time. Without that support it would certainly be no respite for me, in fact worse. So far, nothing found

From the bottom line of casual staff employed as carers, with the minimum of training in some cases to the top level of the funding for the caring situation, in all its many complexities, it constantly seems that no body or government department is able to appreciate the very real deficiencies from start to finish in the caring situation. Since it is generally accepted the cheapest option is for those cared for should be looked after in their own home as far as possible, so why does'nt the Government "grasp the bull by the horns", set up a formal carers title for those carers employed by agencies with at least some sort of NVQ, give them some pride in their job with what amounts to a lower level of nursing and try to get the whole overall situation under better control. If they don't then the situation will get progressively worse over time and far more expensive to put right or the alternative will be to virtually give a"no care services, no money" scenario

Good news - If only £400m

Good news - If only £400m will not go far and we will all still end up fighting for our entitlements Does this Govt really understand the mountain of carers both paid and unpaid there are out there? I think not.

I am a full time carer for my

I am a full time carer for my severely disabled, brain damaged mother. I'm in my 50's mum's in her 80's.
I receive a monthly sum but must provide invoices to whom I pay the money out. I have yet to find somebody to sit with mum (who will understand her needs, therefore allowing me peace of mind) and am told, if I do not provide invoices, proving I have paid someone for something mum related, the Council will demand the money back at the end of the year!
This just gives me more to worry about.
How will the respite break work for me?

All these promises for this

All these promises for this and that which never materialise , I care for my disabled daughter who now as an adult as lost her child tax credits and is expected to live on ESA , a drop of £70 per week plus losing child benefit and ema , I'm a 24/7 carer and get carers allowance £58 per week topped up by income support my ca works out at £0.34p an hour it's an insult to the love and care I give my child , i have no one to support me , the government abuses carers , now we are told benefit will not go up in line of inflation for 3 years and will be just 1% are they trying to force us deeper into poverty ? Surely carers are worth more than being treated as scroungers I work hard am up all hours if the night whilst people who work are asleep in their beds !! the goverment diednt care about carers and never will , no one works 24/7 except carers and for pennies !
I need 2 operations as I have 2 Cateracts I'm told I will have to wait years where's the care in this country just with us badly treated carers , the government use our love for our family members against us I don't know how they sleep at night

See youtube video “Abuse and

See youtube video “Abuse and torture of autistic man must be punished”. It’s every parent of an autistic child's worst respite worker nightmare: respite home health workers caught secretly eye gouging autistic son, kicking, punching him, twisting arm, pulling his hair. Heartbreaking and infuriating and illuminating. We must protect those who can't defend themselves!



Try to make sense of this, if you can.

My Mum is 77 and disabled due to a number of dabilitating illnesses and diseases. Her worst problem is her spine. She was supposed to have been a spinabifida baby but her spine closed in the last few months in her mothers womb, trapping most of the nerves to one leg. Therefore she was born with a deformed lower leg and a club foot. As she's grown older she has developed severe scoliosis and gross arthritis of the spine. The cartlidge in both her knees has worn away to such an extent that her bones have now started to wear away. She can hardly walk yet she still tries to remain independent. Despite all her other illnesses ... lung disease, crohns disease, depression we as a family pull together and look after her ourselves. I'm her main carer, which enables my dad to live a relatively stress free life and work a few days a week. By caring for her ourselves we save the local authority thousands of pounds a year. I help to bathe her, cloth her, give her physiotherapy, take her out, clean her house, do her laundry, take her on holiday and do all the cooking and shopping. These are all things we could get social services to help with but we don't. We don't want to be a burden on our already crumbling economy.

We have chosen to carry the financial and emotional strain but what I haven't chosen is to be treated like a 2nd class citizen in my own country just because our current government have no idea what happens in the real world.

I live on the breadline. If I didn't eat with my parents I would starve. That's not an over exaggeration, that's fact. As my Mums carer I receive the pittance that is otherwise known as Carers Support, which is topped up with a small amount of Income Support to the level deemed "the minimum a person needs to live on" ... where? In India or Peru? I live in a private rent. It's nothing special, just a small flat. I don't qualify for social housing because I already have a place to live and there are 3,000+ people on our county waiting list who are considered more urgent cases than me. Because I get income support I receive housing benefit. Unfortunately I live in Herefordshire, a county where property prices and rents are disproportionate to wages and benefits. My rent is £500pcm ... I receive £364 towards it, meaning I have to pay the difference from my benefit payments, this leaves me with around £50 per week. Gas, electricty, water, TV license and telephone take care of that. So what am I expected to live on? Fresh air obviously!

When I contacted my Local Council about discretionary housing benefit to help make up the shortfall I was told to get some extra work or take in a lodger!!!! Despite already working in excess of 60 hours per week I looked into getting a job. I spoke with the DWP and they told me the max I could earn would be £20pw or they would take my IS off me. That would mean no more Housing Benefit! Ok so what about a lodger then? Same thing, anything over £20 pw and my IS would be stopped. Cleft Stick anyone?

To add insult to injury I received a letter about my council tax benefit today ... thanks to new government legislation I am expected to pay a minimum of 10.5% of my council tax. Where am I supposed to get this money from? It's ludicrous.

I work bloody hard for my "pay". Some nights I don't get home until 8pm and then go straight to bed because I can't afford to have the heating on. I don't go out. I don't smoke. I don't drink. I don't have a car. I try to help myself but am punished for doing so and I'm treated like a sponger despite saving our government thousands upon thousands a year for social care. What I live on woudn't buy a new tie for David Cameron yet he has the audacity to ask me for money? I'm fed up of asking for advice about other benefits or financial support as there are only so many times you can tolerate doors being slammed in your face.

When are we going to have a Government who truly understand the value of family carers and reward them accordingly instead of wasting money on those who don't deserve it? Why is it an habitual drinker, who has never done a days work in her life and smashes up her social housing flat on a regular basis, can get over £200 pw in benefit payments & all her rent and council tax paid yet I have money taken away from me? It stinks and it's not fair... I deserve more that 34p per hour.

well if any carer has spoken

well if any carer has spoken a better words then this is it. I have to agree with you we work 24hours per day 365 days a year. Government having got a clue what we do. money??? well this government only look in one direction, LETS TAKE WHAT WE CAN FROM THE CARERS, DISABLED PEOPLE WHO NEED THE REAL HELP. Im in a similar position to yourself and have found that the so called services really don't no what a carer does, and is shocked at the pittance we receive. If I had time from caring I would fight to be heard for all carers....

I was a carer for 11 years, I

I was a carer for 11 years, I was getting carers allowance and i never got any help, Nothing at all!, no phone calls, no visits, nothing!, on my own, The money in the great scheme of finance is a insult, It's not ring fenced so carers are unlikely to see any of it, It's Just PR.

My local authority tell me

My local authority tell me they won't pay for a carer to go on holiday, but will put in a care support worker should a go on a break. Exactly how am I to pay for such a break out of carers allowance/income support ??

Hi Does anyone know if


Does anyone know if social services or a service can fund or provide 24/7 live in support for someone that can't do anything for them selves but need to be in there own home.

Whilst respite breaks for

Whilst respite breaks for carers are very important and the Govt should be doing something about that, there is a whole lot more that needs to be done.

I am a paid carer for an adult child and receive £59 per week. Another adult child then became ill, needing a carer. Guess what? If you look after more than one person you are only paid the £59 per week. Since looking after two people, my mother has had a stroke and can't speak, read or write (luckily she has no lasting paralysis). I'd like to know from the Government how much I'm saving them by looking after three people for £59 pw

I have looked after my wife

I have looked after my wife for two and a half years after she suffered a series of AT strokes she is severely disabled and can't do anything for herself and is now demented,she talks some times but doesn't hold a conversation with anyone,I have been told I will be given a payment but an underlying one so I will not receive a penny ,,in one letter I am told I am entitled to an amount and in another
Letter I am also told they can not pay any money as my state pension is more then the underlying payment ,I haven't had a break for two and a half years and get 7 hours a week sitting service paid by the council.this means I can not have a day out without giving the sitting service hours up which is not a full day anyway.
I would go on a break provided by the Royal British Legion but must have respite
To do this.we are both well over 81years old,without the carers who come In for
Three by half hours times per day I could not manage ,no visits from the hospital or GPs so it looks like we have been given up by the state.

Hi Eric, That does sound like

Hi Eric,

That does sound like a frustrating situation. Often people are told they have an "underlying entitlement" to something like carer's allowance: this means that the government recognises they are a carer, and would receive the money if it wasn't for the fact that they already receive too much from somewhere else (in your case, the state pension). But the "underlying" bit is important, as it can sometimes mean you're entitled to some other support too, so we would definitely suggest getting in touch with an expert in your area who can look into your whole situation. They can also look into possibilities for respite care too, so the break you need might not be out of the question.

You can find your nearest carers' service, who can help with all these things, using the search box on our front page at - just type in your postcode.

Best wishes, team.

Iv been a carer for my

Iv been a carer for my husband who has althzimers for over 10 years I am trying to get respite so I can have a weekend to go Yorkshire to see my father who also has Althzimers the social say they have not got many funds, is it our right as carers to have so many breaks ?

Hi Jean, We're sorry to hear

Hi Jean,

We're sorry to hear you've been told that there are no funds available to enable you to have some respite and visit your father.
It is generally recognised that carers do need regular respite, however, there is no duty placed on local authorities to provide the funds for this.
How about you email us at with a few more details and we'll have a look at what other options there are for you. team

I have cared for husband who

I have cared for husband who has severe ms for years, havnt had a holiday for18yrs, I care 24/7 get one hours help in morning as not safe to use hoist on my own to get him out of bed although I use it on my own to get him on noff loo and put him to bed etc cant use hands so has to b fed every meal etc
my question is this, I am beginning to crack. I cant stand this much more, although everyone thinks im coping but im a good crying all the time.
wd it be out of the question for my husband to go into respite for one or two nights a week? Is this done at all? Just to be on my own at home to sleep would be more than a help.

Hi Wulfruna, So sorry to hear

Hi Wulfruna,

So sorry to hear about your situation at home—it sounds as though you have been doing a very hard job, very well, for a very long time, and it's not at all surprising that it's starting to feel as though something needs to change.

Temporary respite certainly sounds like a very reasonable solution to us! In these situations it's often the most useful to get some advice from people who know what's available specifically in your local area (because they vary quite a lot across the country). If you'd like to email us on we'll help look into the possibilities. team

My mother is 94yrs of age and

My mother is 94yrs of age and I am her 24/7 carer.

We live together in my bungalow.

Mum does not qualify for continuing care but she does qualify for

Nursing care because of her lack of mobility.

Is mum entitled to extra help because she qualifies for nursing care?

From our local authority.

Hello there Wendy, Without

Hello there Wendy,

Without knowing a little more about your circumstances it's hard to answer your question. If you'd like to send our support team an email (to with a little more information about any benefits you and your mum receive, then we'll do our best to advise you.

Best wishes. team

Hi I'am a social care worker.

Hi I'am a social care worker. I have just been to a meeting to sign up to do my level 2 in dementia and disgusted to find out the goverment does not fund this course they only way they do is the dementia course is based on a English exam !!

I care for my partner full

I care for my partner full time and have not had a respite break in over 4 years as they take all our weekly income with the exception if £67 to cover his care home cost.This means we have no money for rent,council tax food bills therefore making it impossible financially to have a break

With the very large number of

With the very large number of people writing of problems of caring on this forum, what is doing to relieve this terrible pressure? We are left in a deep hole by government, ditched by local authority, dumped on commercial enterprises, charities and voluntary agencies.. and here we sit... waiting for the help for which most of have already paid - our Welfare State.

Charities are taking funds, setting up offices, paying large numbers of staff, directors, trustees, and phone bills. How much better it would be if that funding went directly to those people who most need it, the desperate family carers. We undergo assessment after assessment, removing whatever privacy we might ever have had, we are offered 'cups of tea with carers’, but no respite for the person for whom we care. We are offered no actual overnight respite when we care full time for long periods. We are put down as 'difficult' by paper welding people who have not the slightest interest in our actual needs.

'Personalisation', is one of the laughably fashionable buzz words we hear at the moment. Yet that has no real meaning to anyone with whom we deal.

We need carers' rights! We need the right to a good night's sleep, on a regular basis. We need to have the burden of care lifted occasionally so we can look up and see the stars, or paddle in the sea. Yet all we get are platitudes, crocodile sympathy, and a Carers' Trust which has had the problems eloquently reported to it, on this page, and I'm sure on a daily basis by other desperate individuals, yet seems not to understand that what is needed is the same right to rest as enjoyed by those in paid employment.

We save the country a fortune, at the expense of our own health. Yet, though we are told that we must 'look after your health', we are also told to go to a charity, or to the collapsed social care departments of councils. Our health is (curiously enough) a 'health' matter. That means it is a National Health Service matter.

If your Carers' Trust workers were forced to work 24 hours a day, 365 days a year, you would be sued under employment laws. Family Carers need the right to overnight, good quality respite facilities, where they can reliably book respite for a period which suits them.

Family Carers need rights! We need a break!

Hi Charlotte. Here's our

Hi Charlotte. Here's our Policy and Public Affairs Manager's response to your comment:

"Thank you for taking the time to respond.

We absolutely agree that all carers should have access to regular breaks from their caring role and for good quality respite services. You are right to point out that carers save the country a fortune – we contribute the equivalent of £119 billion every year to the economy. The government have provided £130 million in 2015/16 to be spent on carers breaks – this is welcome, but we know that if the money isn’t ring fenced then it doesn’t always reach carers.

More widely, we are asking all candidates in the run up to the General Election not to forget about carers in 2015. Carers Trust have 10 key issues which we want all political parties to take account of. One of the issues is around carers breaks, which can be a huge help to carers of all ages. It can make the difference between being able to carry on, and having to give up. If a carer cannot carry on, there will potentially be enormous care costs to the taxpayer. We want the political parties to commit to ensure that funding allocated to carers is spent on carers to allow carers to take a break.

More information can be found here:

Your local carer organisation will be able to provide support and may have details of local respite services in your area. On there is a box on the right-hand side which says ‘find your local care and carer services’, if you type in your post code this will direct you to the nearest service.

Thank you once again for posting your comments."

hi i was a carer for my

hi i was a carer for my mother who passed way one week ago i want to know will i get the respite grant in june. paul donnellan

Hi Paul, We're sorry to hear

Hi Paul,

We're sorry to hear about your mother's passing. We hope you're being supported by family, friends and services during this time.

Carers breaks/respite policies may vary from area to area so it would be good for you to seek specialist advice. You can contact your local council about it, or contact your local Carers Trust network partner (find a service here ). Alternatively, you may wish to contact the Carers UK helpline

hi my mum had a fall down the

hi my mum had a fall down the stairs nearly 5 months ago shes now a tetraplegic she broke her neck in 4 places from her c3 to her c6 and her t6 in her back she needs 24hour care and we only have the carers come in once a day in the morning for an hour and the council are now saying they wil asses her needs for 6 wks and then we will have to contribute to her care we are struggling as it is we are getting no help and they said we have to pay 20% towards the wet room for her i think this is shocking and is there anything we cam do about it my dads her main carer but hes going back to work 16 hours a wk because he cant afford to not work can u help plz thank u.

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