What Can the Government Do to Help You?

You may be glad to hear that after spouting forth recently, not even one opinion will be spouted by me in this blog. I want you to spout instead.

In November or December, the Government will outline how they will try support carers between 2011 and 2015. But until 20th September, we all have the chance to influence their thinking. The Princess Royal Trust for Carers and Crossroads Care will be submitting a response and we’re both keen to hear your thoughts and opinions.

The Government have split their plans into five areas and I want your ideas on what you think the Government could do to help you (or carers generally):

  1. Be respected as expert care partners and have access to personalised services they need to support them in their caring role
  2. Have a life of their alongside their caring role
  3. Be supported so that they care not forced into financial hardship by their caring role (NB benefits are being considered as part of another consultation and not this one, which I’ll come to in a later blog, so it would be more useful to focus on other things here)
  4. Be supported to stay mentally and physically well and treated with dignity.
  5. Children and young people will be protected from inappropriate caring and have the support they need to learn, develop and thrive, to enjoy positive childhoods and to achieve against all the Every Child Matters outcomes

So, flood me with comments and it would be great if you could explain to me why you think the Government should prioritise what you’re suggesting, rather than other areas. And also why it would help achieve one of the five aims outlined above.

Thanks folks



August 27, 2010 - Posted by | Budget, Carers Strategy, David Cameron, Health, Mental Health, Social Care, Young carers | , , , , , , , , ,


  1. I would like to see a SIMPLE handbook for Carers, outlining exactly what their entitlements are, in respect of, Outside Help, Financial Assistance, Respite Care Costs, Medical Care and Housing. All of these subjects should be standardised Nationally, not on a Postcode basis as deemed fit by the Local Authority.
    So much of the written material surrounding Carers rights are written in techno-speak and not Plain English

    Comment by Colin M Baker | August 27, 2010 | Reply

    • Colin, you took the words right out of my mouth. For example, am I entitled to free prescriptions or free dental treatment? I just don’t know.

      Comment by Barbara Hart | September 15, 2010 | Reply

    • well said.also should have some sort of proof as being a carer for discount and carers are suppose to get in free at zoos etc but you need proof you are actually a carer for this.

      Comment by shirley platt | September 16, 2010 | Reply

    • how right you are, i have moved though three counties over the last 25 years as a carer, and have found a vast differance between all three. the one i am in now was good but without any input from us they have changed the way they do things.
      No body now checks up on us, in other words if we do not bother them they do not bother us. no dedicated social worker either pot luck is the order of the day.
      your idea i am sure would us a lot more stability.
      Regards Michael

      Comment by Michael | September 16, 2010 | Reply

  2. It is clear to me from a personal, professional and carers perspective (not to mention the countless threads on various forums) that a major problem for carers is the lack of partnership working with various professionals, specifically social services and medical and allied health professionals. Long before I became a carer I acknowledged the expertise that carers had on the health and social well being of the person they cared for and since becoming a carer I can now share their frustration at how many professionals still view and treat them. When will it ever be recognised that we have extensive knowledge on the needs and services that would best impact on the life of our loved ones and extensive knowledge on their health including indicators of poor or changing health.

    I do not want to replace the role of the professionals. They have a job to do which I value and, at times badly need their input and expertise. I just ask that they recognise our expertise and together, working in partnership we can deliver a more effective and better quality of care and services.

    I live in hope of carers being treated as equal and valuable partners.

    Comment by james | August 27, 2010 | Reply

  3. I feel strongly that the Government needs to focus on not letting Carers fall into financial hardship because of their caring role. The Carers Allowance is a pittance. Also I feel that not allowing Carers on a Basic State Pension, Carers Allowance (I am one) is unfair.

    Secondly I feel the Government need to raise the profile of Carers as doing a ‘valuable job’ that contributes to Society. We do our caring out of love but that does not take away the fact that it is work, and very hard work, physically and emotionally. I still very invisible as a Carer and undervalued by Society.

    What can the Government do to help Carers have a life of their own – make Respite Care more accessible and affordable, also make studying to improve chances of going back to work, working from home, or just to keep the mind active, affordable and accessible.

    I too live in hope that Carers will be treated fairly and equally.

    Comment by Anne Yavary | August 27, 2010 | Reply

    • I 100% agree. The financial side needs addressing urgently.

      Comment by Brenda Wilson | September 15, 2010 | Reply

    • I agree, I am in Scotland and aware this is for England, but I would love to access affordable training that would allow me to work flexibly from home.

      Comment by Laura | September 15, 2010 | Reply

    • For the last 10 years I have been a widdow and also a carer. I too feel that people in our position should be eligible for the carers allowance as that is exactly what we are. If my husband were still alive I would have both his support and income and could still get the allowance but as I get widdows benefit I am eligible. There must be hundred of others in the same position who are struggling to care for someone they love but not getting the financial support they deserve.

      Comment by Janet | September 16, 2010 | Reply

    • I agree with all the comments so far re the financial struggle . For a care agency to look after my wife would be approx £400 PW. I have given up my job to do it and get £50 pw Care Allownce . I like the idea too of registered carers. If they can’t get extra allowance then the following should considered
      – wider VAT exemption – say via a Carer’s swipe card
      – Council fees exception
      – utilities paid for or a larger contribution to them

      Comment by timothy coulton | September 18, 2010 | Reply

  4. I would like the government to put a stop to the demonising of disabled people and carers in the press – but I doubt this will happen as it seems to suit the government’s cuts agends.

    Comment by Eun | August 27, 2010 | Reply

    • I agree, Eun.

      Comment by charles47 | September 1, 2010 | Reply

  5. I am a Expert Carer Representative ( 33 years of Caring) & 70years old sitting on a Carers Strategy Committee for a Hospital Foundation Trust. I have sat on it for nearly 7years trying to get a hospital wide improvement on Admission & Discharge. I am still hoping.
    Three of us Carers have experienced 4 Chairpersons and constant changing of staff members which has meant we have gone over the same ground over & over again.
    The ignorance of some staff about carers and their expertise is outrageous. Lets remember this group does not involve GP’s, Doctors or Consultants they are untouchable.
    It should be mandatory that everyone working in the NHS should have Carer Awareness training.
    The Carers Strategy should also be mandatory for all NHS & Health & Private establishments like GP’s.
    Refreshing the strategy is right but some have not reached stage one yet!!!
    It is all very well to sign up to it but it has to be put into practice.
    To identify hidden Carers and support them in the early stages of their carer experience will be cost effective in the long run.
    I support the view of a Simple Carer handbook nation wide.
    I am expert on Admission & Discharge policies too.

    Comment by Daphne Sanderson | August 27, 2010 | Reply

    • Carer Awareness training is an excellent idea. I was amazed that my lovely GP, when talking to me about my general stress levels, never thought to mention the support that might be available to me through local carers’ charities (even though she knew about my husband’s health issues). It seemed as though she just didn’t make the connection between the state that I was in and the ‘bigger picture’ and, instead, I’ve had to seek out support. Fine for me: I don’t have any day-to-day caring responsibilities to deal with and just have the ever-present stress of living with somebody with a serious health condition (and I have health insurance, a workplace Employee Assistance Programme with a counselling service, etc). Not so good for people who have a far greater burden to carry as carers and may not have access to similar resources.

      Comment by exilednzer | September 1, 2010 | Reply

    • Absolutely spot on. I have been involved in Carering for a number of years now and whilst there have been great improvements in my area, Daphne is right, the number of changes in executives and their staff means that all the work completed has to be done again as they have no idea what caring is about. The Admissions and Discharges policy has never worked but at last some improvements can be seen in some areas within the county. It is slow and will take years to show substancial improvement.

      Comment by Terry White | September 16, 2010 | Reply

  6. In reply to the five areas highlighted i would like to say this;
    1)CARE – RESPECT – ACCESS TO HELP all sound fine when spoken but are no good when the country and its politicians think they will get all this without paying for it.

    2)The CARING ROLE will always demand all that a person has and often much more. Cutting budgets and support will not help,and are the MP,really listening?!

    3)Financial hardship will always play a large part of the CARERS life until such times when MP,s and the country realise that you cannot GET SOMETHING FOR NOTHING.

    4)In recent years this kind of support has proved to be non existent. Even when the goverment earmarked money for SHORT TERM BREAKS for CARERS. MONEY MUST NOT ONLY BE RING FENCED BUT PROTECTED BY LAWS WITH REAL TEETH.

    5)For many years young people have born a burden not meant for young shoulders. THIS WILL CONTINUE AS LONG AS SOCIETY UNDERVALUES ALL CARERS.


    Comment by Taras Kurylak | August 30, 2010 | Reply

    • After years of promises it will be interesting to see what comes out of all this.
      Over the past few years I also had expenditure, wheelchair(s), stairlift, shower instead of bath, access to house – no ramp – health and safety reasons!!! Alterations to part of house for safety purposes. Assistance – what is that!

      Comment by Terry White | September 16, 2010 | Reply

  7. Well said Taras – you’ve said it all.

    Comment by Anne Yavary | September 7, 2010 | Reply

  8. How do we submit our own views directly?

    Comment by pat duffield | September 15, 2010 | Reply

  9. Give us Scots our independence and,when we’re no longer financially propping up the United Kingdom,we’ll show you,yet again,what a caring society really looks like!

    Comment by Iain | September 15, 2010 | Reply

  10. I know this will sound truly pathetic but one thing I would appreciate which I don’t think would be expensive would be practical help on actually caring for somebody. I was told the district nurse would tell me how to look after somebody wrt dressing, bathing etc but they don’t do this anymore. Half the time I worry I’m doing too much and half the time I worry I’m neglecting them.

    Comment by Barbara Hart | September 15, 2010 | Reply

  11. So far I have had to buy a wheelchair a stairlift and had a shower fitted instead of a bath. My next requirement will be to change the shower into a wet room. I would like to see more financial help for elderly carers.

    We have been on holiday this year to an adapted caravan.
    I can find no list of holiday accomodation for the disabled and carer. I have been offered accomodation where there were steps. We need a standard so that it is easier to find suitable holiday places.

    Comment by john binding | September 15, 2010 | Reply

  12. As a carer, I feel that I am often over looked by the government. At the moment I am not entitled to claim any sort of financial assistance in my own right due to the way my husband’s benefits are. At the moment he is on high rate DLA with low rate care, because he’s getting low rate care I cannot claim carer’s allowance. I would like to see the benefits system looked at, I would like my husband to be able to have some of his benefits for himself rather than having to spend it on bills, grocery’s and things for me. I would like to be recognized as a carer rather than being looked at as a lazy sponger who can’t be bothered to get a job. I would like to be able to claim carer’s allowance in my own right rather than it being attached to my husband’s DLA. I would like to know that when I need a break I can pick up the phone and ask for help and not have to worry about how much it’s going to cost. I would like to be recognized as someone who works 24/7 without a day off. I would just like to be recognized as a valued member of society.

    Comment by Sarah Slater | September 15, 2010 | Reply

  13. A lot of carers/carees are terrified of the DLA/IB plans to cut 20% of claimants. How can this possibly be dealt with fairly and reasonably when unqualified experts have a tickbox that says they have to reject both new and existing claimants. This would mean that 20% of carers will lose carers allowance as it is an archaic benefit that depends on their caree actually recieving DLA (at middle/higher rate)If they lose CA they will then also lose Income Support. Get a brain government, how are you suddenly going to make X amount of jobs appear out of thin air that will allow carers to still provide 24/7 support. Are you going to force every employer to take on unreliable, harassed, staff that will need to go home at a moments notice? Or perhaps you intend to spend billions in replacement care? Here’s a suggestion, pay carers for the immence amount of voluntary work they do outside of caring. Or treat them as fairly as disabled, work for 16 hours a week and get tax credits to top it up. This way we don’t get caught up in the domino effect of our carees losing their benefits while still expected to provide care. Actually we all know this consultation means absolutely zilch. Every government will do exactly what it wants while giving the illusion of choice!

    Comment by yvonne rea | September 15, 2010 | Reply

  14. point 2
    have a life of my own along side my caring role?!!! you must be joking. i recently asked for a carers assessment as a friend/carer had been given £200.00 to spend on “herself”.( she had to prove she had spent the money on herself” she was told by social services that there was a “pot” intended for the welfare of carers and they had to spend the money “on carers” she didn’t even have to ask for it, they just sent her a cheque! hence the request for an assessment. my social worker said” i can’t tell you what’s available, you have to ask for something and then i tell you if you can have it”!!!!but as your son gets a high care package i don’t expect you will get anything!!! well why not? if its coming out of a different “pot”are we not all, each and every carer entitled to the same. surely we shouldn’t have to be “assessed”. a “prevention rather than cure” attitude from the government would seem more sensible. why let us get to the end of our tether before you are entitled to a break/money. any way do YOU have any money left over to go somewhere by yourself to recover?

    Comment by liz arthur | September 15, 2010 | Reply

  15. I agree with all the thread of comments. I care for learning disabled and there is absolutely no joined up service between Social Services and the PCT’s and the NHS,lack of co ordination in the provision of services. GP have no knowledge of mental health issues. Community services do not accommodate disabled needs. When will the government ever get to grips with providing an efficient service saving time and valuable resources between the health & care professionals? I am exhausted with caring responsibilities. Carers awareness and refresher in disability awareness mandatory in all services.What about working carers? All done on the cheap when residential units and homes shut down they save money,and you have a burden and sacrifice the rest of your life. Increase the carers allowance for those who provide out of duty love responsibilty or goodwill.

    Comment by sfrancis | September 15, 2010 | Reply

  16. Tax breaks for carers and our roles to be recognised better by employers.

    I am self employed and support two adult sons with disabilities. My decision was to become self employed when my younger son first became ill – through necessity. Although employers say they will support carers with flexible working in times of crisis, in reality it is often not the case. I am not entitled to any financial carer benefits. I work long hours, from home, to ensure that my sons have the support which they continually need. Any financial assistance that the government can supply for people like me would make our daily lives better so we can move on from existing to having some quality of life.

    Comment by Lorna Brindley | September 15, 2010 | Reply

  17. Carers save the government a lot of money, some carers are very ill themselves and they still provide care like myself.

    I am Diabetic with ill health, and still provide care without any breaks, very little money to live on and huge household bills.

    Carers allownace is very little, it’s not enough for bus fares. It’s an insult to carers who provide care out of love and humanity.

    Comment by lina | September 15, 2010 | Reply

    • I am a carer,have been for 8 years without a break,I have asked for respite several times, with no joy.The person I care for has had several strokes,now has a fractured pelvis, and for some reason cannot stand up.walk,go to toilet unaided,so is subjected to a life upstairs,as we cant afford a stair lift,we dont have a downstairs toilet,we dont have a wet room,so a bowl for a wash is the only source he has for a wash.I get carers allowance which goes on food shopping,my credit cards are at limited due to intrest taking of more and more.we have a team coming in at moment to wash & change pjs, twice a day,morning does take a bit longer as shave is needed,evening care is in and out 10mins, my son has to put him to bed,I get him up in morning ready waiting for him to get a wash actually bring a bowl in for him. yet they have nvq to prove they are above us in the care department that is why they get £9.per visit by there agency,The care they give actually finishes tomorrow,so it looks like i will be able to care once again unaided,a time which suits us to get him washed,changed ready for the great day ahead.why is it we get treated as nothing get paid rubbish.they get car allowance gloves all kinds of things aprons,creams not allowed to lift.yet we do we buy all kinds of stuff to rub in to prevent bed sores all this comes out of our benefits,so why cant we carers get same rate as an agency,get our nvq badge,get 4 days on 4 days off like them so they dont get stressed and become ill.then we would become scroungers benefit cheats etc.what a world. a

      Comment by shirley platt | September 16, 2010 | Reply

    • i too am a carer for my blind,diabetic partner who has also had a kidney transplant and has underlying problems with her health so it was a surprise when i was told she did not need an escort to her hospital apps when the drivers turn up knock the door and walk away as do the hospital staff when its written on her notes she`s reg. blind is their no care in the hospitals anymore.

      Comment by d harrild | September 16, 2010 | Reply

  18. 6 weeks summer holidays is far to long for carers with Autistic children. I have an 8 year old son with Aspergers and after 2 weeks he was in a right state because he didn’t have the structure of school. I would suggest 2 weeks at May and 2 weeks in October and reduce the summer to 4 weeks.

    Comment by Lisa | September 15, 2010 | Reply

  19. To give the carer some real financial benefit, that truly helps them in their caring role. Stop treating it as taxable income, which then results in loosing a large chunk of your council tax benefits. The money is to help with many aspects of caring, such as frequent to hospital / various clinics and regular GP visits. As others rightly say, it is an insult at £1.54, for 35 hours a week. Caring does not stop at 35 hours, it carries on night and day.
    The coming changes to the welfare system, especially with the DLA and CA is a huge worry and the government should be ashamed that they are putting so many of us under even greater strain, that we are to be re-assessed, our partners sent for more medicals, when coping with the caring role, not to mention the disabilities that the person has. Is this what we have come down to, to punish those who are most vulnerable?

    Comment by J Ford | September 15, 2010 | Reply

  20. 5 years ago when my partner of 31 years became ill and was diagnosed with progessive MS I had to give up my career to become his carer.Nobody in their right mind would chose a career in caring – money worries,working 24/7,no paid holidays & sickness – in fact you daren’t be ill.We receive no training how to cope but are expected to GET ON WITH IT – think this is very out of sight out of mind attitude,just the way the Government wants it – praising our roles as carers and saying how much we are valued by the country but as they have no idea whatsoever of a day in the life of a carer they just don’t care.Do think that the idea of a dummies guide for carers is an excellent idea,but it must be written by ezperts in the caring field.

    Comment by Betty | September 15, 2010 | Reply

  21. “Be supported to stay mentally and physically well and treated with dignity.’
    My husband attempted a suicide but failed leaving himself with severe cerebral damage. This left him with impaired short & long term memory. The emotional impact on me was devastating. I suffered post traumatic stress disorder for months/years and bouts of severe depression. My mothering instincts responded to his much diminished mental capacity and helplessness. I have supported him for 30years . He looks like the man I married but mentally is not the same . Coming to terms with all this has been hard. My emotional support came from a number of sources:
    A GP who understood and suffered depression. Most do not understand.
    Good friends ,
    Counselling Services in varying forms, group & one to one e.g. Gloucestershire Counselling services.
    Carers Gloucestershire who employ Carer workers who provide a listening ear,courses, guidance and opportunities to meet and talk to other carers.
    Crossroads who ‘Care for the Carer’ and have helped me steer away from another break down.
    SOBS who provide support for those bereaved by suicide. I lost the man I married he is alive but not the same.
    I would ask the government to think carefully about what they cut back on . Since I stopped working on ill health grounds having had no help or support for 20 years. My health was damaged by the pressures of supporting my husband and my elderly parents. Without the support for the last 10years from the 4 Carers organisations above I would have seriously considered suicide as a way out. Without me the whole edifice would crumble and the cost to the government would be a lot more.
    The ripple effect of suicide can create more suicides and mental health problems, small inputs of support can be cost effect. Well trained professionals are needed not amateur charity workers. Do not destroy all that we have achieved in the last 15 years.

    Comment by Daphne Sanderson | September 15, 2010 | Reply

  22. I would like to see an end to the cutting of benefits for the person being cared for when someone starts climing carers allowance for looking fter them i.e. when i moved in with my mother to care for her she lost disabled persons allowance from council tax benefit, disabled persons higher rate of state pension. the loss of these benefits almost pays for my carers allowance. just because i care for her does not mean she has higher costs of living.

    Comment by Leo | September 16, 2010 | Reply

  23. I would like carers to receive personal budgets, as part of the carers assesment process to be reveiwed once a year, so carers are in charge of respite care etc. and don’t have to keep asking for help when it’s needed and sometimes being turned down.

    Comment by Diane Kirtley | September 16, 2010 | Reply

    • Regarding Personal Budgets, I believe these are available to the person who is being cared for, which enables them to pay for all the services provided by Social Services, but under their own control. My wife and I are about to ivestigate Personal Budgets to see whether we would be better off using that system.
      Try this site for information, about DIRECT PAYMENTS
      If the link is not clickable, copy and paste it into your browser.
      Hope you find the information you want.

      Comment by Colin M Baker | September 16, 2010 | Reply

      • Yes i know these are available to service users but i beleive these should also be available to carers so they can manage there own respite.

        Comment by Diane Kirtley | September 17, 2010

      • As I understand it, the money to pay for the Cared for person to go into Respite Care is included in the Personal Budget, however, as you say, there is no direct funding for the Carer to have a break away from home, whilst the Cared for person is in respite. How the government expects Carers to fund their own break away from the home on the pittance they get paid, is beyond me. Esppecially when one knows of people on JSA that seem to be able to afford holidays away.
        As it says in the Good Book, To those that have, shall be given and to those that have not, shall be taken away. (Especially if they get a pension and Carers Allowance, in which case you can not have your cake and eat it!)

        Comment by Colin M Baker | September 18, 2010

  24. The Minister should stop listening to the executives of the various NHS Trusts and all those supposed experts. He should get his team on the ground and visit the carer groups around the country and listen to them. Asking for information in writing, sending out surveys doesn’t work, Feet on the ground does. There are many items that need addressing and not always financial. New Ways of Working in Mental Health, a research program undertaken by Newcastle University Mental Health Workforce Study Group produced an excellent report that was rejected by the Labour Government because it highlighted there failings. It covered all aspects that are now being asked by the current government in great detail. I informed the Minister of this report, but have not had an acknowledgement or response from any of his staff. So is this another exercise to show face by a government but producing absolutely nothing. Only time will tell.

    Comment by Terry White | September 16, 2010 | Reply

  25. i ffcare for my dissabled husband,one thing i find frustrating is that i have to pay prescription charges for myself,my only contribution to our buget is my carers allowance. So sometimes i go without medication,i have arthritis and have just had a cateract operation,so i feel quite vunerable myself.But being a carer you just have to get on with it.What about free prescriptions for all carers,
    also an assesment every now and then to see if we could possibly have a short holiday maybe with other carers to make friends and get mutual support,a carers weekend break?

    Comment by Liz Hardaker | September 20, 2010 | Reply

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