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State of Caring conference 2016 - Carers Strategy takes centre stage

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Understand the lived experience of carers, give us the foundations of support to care well without compromising our own health, and appreciate that health and care professionals are not the only experts.

These and other sentiments were candidly and positively expressed at the recent State of Caring conference hosted by Carers UK. It was an opportunity for the Department of Health (DH) – manifest in convivial human form by Alistair Burt, Minister for Community and Social Care and our policy leads Mark Browne and Amy Baldwin - to showcase the work on creation of a new Carers Strategy, the ongoing engagement exercise informing it, and to answer questions from delegates.

It was especially humbling to hear from carers, including Margaret Dangoor whose husband has advanced dementia.
It was especially humbling to hear from carers, including Margaret Dangoor whose husband has advanced dementia.

It was especially humbling and informative to hear from carers themselves, including Margaret Dangoor whose husband has advanced dementia. She talked openly and with humility about the mental and physical stresses of caring.

Margaret made a plea to government and service providers to get the basics of carer support right first, and then pursue technological innovations. Commenting on her own experience and that of other carers, she observed the equipment they are expected to use is often out of date and difficult to maintain.

Dame Philippa Russell DBE, Vice President of Carers UK, Chair Emeritus of the Standing Commission for Carers and carer for her son with learning disabilities for more than 50 years, set out her personal vision of what a carers’ strategy might look like…

Dame Philippa Russell DBE, Vice President of Carers UK felt that any new framework should be “creative, intergenerational and avoid demonising older carers.”
Dame Philippa Russell DBE, Vice President of Carers UK felt that any new framework should be “creative, intergenerational and avoid demonising older carers.”

She felt that any new support framework should be “creative, intergenerational and avoid demonising older carers.” She spoke of service commissioners and providers sometimes assuming carers’ expectations were too expensive or impractical to realise. “Proper engagement with us” would prove this not to be the case, she suggested.

Dame Philippa also emphasised one critical aspect of support which often gets neglected: appropriate housing. She felt so strongly she mentioned it twice! For more on this topic, see this blog post from our Director General for Social Care, Jon Rouse.

Alistair Burt addressed a receptive and appreciative audience, setting out the case for a new strategy; a case which is already mindful of the concerns raised by Margaret, Dame Philippa and others at the conference. He used the opportunity to share some emerging themes from the call for evidence, including:

  • the need for more employers to recognise and support staff with caring responsibilities
  • the detrimental impact on carers education and training aspirations
  • a sense that society does not properly value the contribution unpaid carers make

He also observed the need to better understand and support the health and wellbeing of young carers – a group understandably harder to reach than others. Work is underway with colleagues at the Department for Education to boost engagement in this area – watch this space!

In his closing remarks, the Minister observed that “real, lasting change only happens through true collaboration. That means government, communities and health and care services working together in recognition of the value and needs of carers in society.”

Meanwhile, DH colleagues enjoyed meeting delegates on the exhibition stand and encouraged them to pick up pens and record their hopes, fears and ideas for the Carers Strategy across two pinboards.

IMG_4141 IMG_4142

Mark and Amy also took to the conference stage to explain the genesis of the call for evidence and answer questions from the floor. The feedback received was incredibly valuable as was the forging of new connections with carers, care organisations and more than one enthusiastic local Healthwatch representative.

DH's Mark Browne and Amy Baldwin were very happy to answer delegates questions
DH's Mark Browne and Amy Baldwin were very happy to answer delegates many and varied questions

Whether inscribed on sheets, vocalised from the floor or shared on twitter, every interaction - every new connection - will be used to inform the shape and delivery of the strategy.  Online or offline, your views are equally valuable. Thank you!

The sound of caring
For those of you unable to attend on the day, or who missed our live twitter coverage, click on these links below to hear the views, hopes and concerns of delegates and speakers at the conference.

Get involved
The call for evidence is still open – if you are yet to contribute please do so now and help shape the future of carer support in England.

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  1. Comment by Mark Brightburn posted on

    Thanks so much Mark for this great write up. Great to hear, as well as read and see what when on. So important that we get the Carers Strategy right.

    • Replies to Mark Brightburn>

      Comment by Mark Osterloh posted on

      Thanks Mark - it was a really positive and informative event. Lots to chew on as our call for evidence continues...

      • Replies to Mark Osterloh>

        Comment by liz posted on

        Hi Mark.Are you inviting positive comments only? Comments by myself and others have not been published .
        Thank you

        • Replies to liz>

          Comment by Mark Osterloh posted on

          Hi Liz

          I was away hence the delay in publication. All comments welcome so long as they do not stray into personal attacks or general abuse. As you will see in other posts, positive and negative comments are published frequently. Your comments are now live on the site along with other respondents.


          Social Care News blog editor

  2. Comment by liz posted on

    Shocking and institutional. More Paper tiger 's meowing into their tea whilst paying off their mortgages .What happened to the original Carers strategy and the concept of Carers are 'equal partners in the processes' and they should have a 'life of their own' Too expensive? A public and independent inquiry is needed to review the goings on about money spent on the original strategy. Institutions appear to like the term 'learning from mistakes ; How can the Standing commission for Carers improve if they do not learn from their errors?

  3. Comment by Laura Graham posted on

    The current system does not work for carers. I don't need a Social worker yet I have to have one for a Carers Assessment. I've had 5 in 3 years. They have lied to me, about me, mislead me, withheld information from me, have cost me 100s of hours of time in correcting their mistakes and chasing them to do the job they are paid to do. And then there's the funding panel, a mysterious bunch of NHS employees who decide how much Local Authority funding you are worth. The Panel do not keep notes of their decision making, they are anonymous and unaccountable. To call them a Resource Panel is ridiculous - they are a rationing body who are not qualified to make financial decisions about carers! The system is an absolute disgrace and until this is acknowledged, no improvement will be forthcoming!

  4. Comment by john posted on

    first thing carers need is to lose the stigma of being a benefit scrounger and being treat as such by powers that be this is so demorolizing we should never be made to claim benefits due to fact we work we should infact be given a real wage,better support ,greater infrastructure to services and life made generally easier we currently have to fight for every crumb system gives our loved ones

  5. Comment by Jane posted on

    i personally am fed up with hearing/reading about conferences which are supposed to highlight and further the needs of Carers when all that happens is a jolly get together and a nice little write up afterwards! Carers are unpaid (well £62.10 Carers allowance and IF you can get a little job as well a pittance more) family members or friends who provide the caring support for a loved one, often 24/7 with no professional or practical support which is appropriate. Social workers treat many of us as a nuisance, untrained non professionals who get in their way when we ask for help which SHOULD be provided, information which SHOULD be given, instead we encounter obstruction, lies, patronising responses and a communication system which is poor and without continuity. Carers need support in order to continue providing care, the people at the core of the issue are the ones we care and support. If their needs are met then as a knock on effect the Carers needs can be met, it's not rocket science! ONE of the worst things a social worker said to me at an assessment review as he was rapidly going through all the questions as if time was running out and after being told my sons needs have increased and become more complex and his behaviour deteriorated was 'you don't work do you?' to which I replied 'yes I do....I work full time, more hours than you do'. It was like water falling off a ducks back, ignorance and a dismissive shake of his head. The Care Act? .. I've only encountered my LA quoting it when it's in their favour, otherwise it's ignored, Nothing has or will change for Carers until the government act to fully support us, not acknowledge how many billions of pounds we save them each year.

    • Replies to Jane>

      Comment by Mark Osterloh posted on

      The conference was hosted by Carers UK - an organisation dedicated to improving support and wellbeing for carers. There were also many carers in attendance, some of whom addressed the conference, and whom I felt very humbled and privileged to meet. It was not a jolly, but a gathering of good people with the will to make a positive difference in people's lives. I understand there is sometimes cynicism around exercises of this kind but is not better to seek carers views on what they need rather than make assumptions - and policies - without consultation?
      Social Care News editor

      • Replies to Mark Osterloh>

        Comment by Jane posted on

        I agree it's absolutely the right thing to do in gaining input from Carers, I have myself completed questionnaires from Carers UK. If any of the Carers who spoke at the conference put forward issues which myself and others who have commented on this thread I would hope and expect Carers UK would address these but our point is that the constant stumbling blocks come from social services and that's where the problem lies. Charities can give you information and point you in the right direction but when you come up against obstructive practices then we all feel enormously frustrated.

        • Replies to Jane>

          Comment by Karen posted on

          I agree, they are the biggest problem in my life...and to try and find the facts from agencies that set criteria down is not an equal oportunity for any carer, we should all have access to all information, advocacy and help!

      • Replies to Mark Osterloh>

        Comment by Laura Graham posted on

        Mark, please do tell us what you believe Carers UK have done in improving the lives of carers? As a carer, I don't see it so I'm interested in your evidence please.

        • Replies to Laura Graham>

          Comment by Mark Osterloh posted on

          Laura, I made no comment on what Carers UK have done to improve carers' lives. I can only speak as one who attended the conference, listened and reported the views of carers and those who support them.

          • Replies to Mark Osterloh>

            Comment by liz posted on

            Hi John I am glad you are reporting on Carers issues.Perhaps you could take a peep at CUK face book group and read the angry and desperate posts by Carers ,then check out CUK's accounts,you could say money rich with public money and then tell me if CUK as an organisation dedicated to improving support and wellbeing for carers.Or do they just provide a huge telephone service whilst swelling their organisation .You make them sound wonderful for organising this event the Government have given them a grant of over £90000 to do this.Have you seen the Heléna Herklots salary ? ,Next time use your investigative journalist training and ask the question what do 'they' mean by 'support' & 'wellbeing'

          • Replies to Mark Osterloh>

            Comment by Laura Graham posted on

            'an organisation dedicated to support and well-being " - to be more precise. What evidence do you have of that please?

          • Replies to Mark Osterloh>

            Comment by Clivegsd posted on

            So why were rank-and-file carers not informed or invited to this little 'jolly'? As usual that self-appointed charity is given preferential treatment over us carers.

            Sorry but anything that organisation does is an insult to carers, we can speak for ourselves as we are not simpering old biddies incapable of using our brains, we do have a brain or didn't you realise that Mark? Time to change the focus away from charities and onto carers themselves

          • Replies to Clivegsd>

            Comment by Mark Osterloh posted on

            Please see my reply to John posted at 11.44am, but just to re-state: this was a conference primarily for people working in carer support services organised by Carers UK. They hold it every year. It was not a jolly but a serious gathering to discuss how to improve support. Carers were also key speakers and their views highly valued but in a reasonably small venue I imagine you can't invite everybody. Meanwhile, I do not see how anything I have written suggests that I think carers are incapable of using their brains. Everything I have written has been respectful and admiring of carers.

      • Replies to Mark Osterloh>

        Comment by john posted on

        well i want to know as a carer why i was never given the chance to attend p[ prob couldnt have went ] and what have they done to realy help us all they do is talk about what they believe what we want and never seem to invite us all to voice our real opions

      • Replies to Mark Osterloh>

        Comment by Toxicpotato posted on

        There is cynicism around these exercises because too many of use have had to frantically find replacemenrt care whilst being called to interview at jcp for work ready interviews. There is cynicism because LAs have a duty to carry out carers assessments but no duty to have outcomes.

      • Replies to Mark Osterloh>

        Comment by liz posted on

        I guess you could take the comments here as part of the consultation as they seem to be made by experienced Carer's.I am surprised posts are being slow to be passed by the moderator,are you tucked up in bed? Many of us are still awake hence the term Caring 24/7

        • Replies to liz>

          Comment by Mark Osterloh posted on

          Comments are not slow to be moderated. No one, least of all me, would disagree that carers have huge responsibilities and stresses 24 hours a day, but I also have family obligations beyond moderation of this website so that is why comments are not published late at night. I can only repeat that I met some amazing carers at the conference and I hope their concerns will be acted upon. Furthermore, I reported on the conference in good faith and with the sincere hope that something good comes out of it. It is a shame therefore that some individuals have chosen to post comments that disregard the tone and intent of this story. I am always happy to post positive or negative comments so long as they do not veer into unnecessary personal criticism or are otherwise abusive in tone. Some comments have strayed close to this territory.

          • Replies to Mark Osterloh>

            Comment by liz posted on

            Hi John and good Morning .
            Are you suggesting only the carers with issues who attended this meet will be acted upon ?
            I strongly suggest you forward the views expressed here too .
            I do not agree comments have '' unnecessary personal criticism or are otherwise abusive in tone'' What you are reading is the truth and honest critic and that does hurt occasionally.
            If you really want something good to happen perhaps you could invite a colleague to investigate what is really going on behind the front and ask the big question ;what ever happened to the original Carers strategy '

          • Replies to liz>

            Comment by Mark Osterloh posted on

            Good morning Liz - yes I'm Mark not John. I did not suggest at any point that only carers who attended would have their views considered and I am not sure why you would think this would be the case. Our online call for evidence is ongoing, open to all carers and those who support them, and will be further complemented by round table events and other means of engagement. All views will be taken on board by the policy team running this information gathering exercise - including comments to this post. As for the original carers strategy,it is precisely because our population continues to grow, age and diversify that we need a new one which reflects the modern state of caring. To achieve this, we need to learn more about carers needs now to deliver better support in the future. And I stand by the point that comments such as those referring to the moderator being 'tucked up in bed' are unnecessary and not relevant to the discussion. It is not slow or unreasonable for comments submitted late in the evening to be moderated and published the next day - as these have been.

          • Replies to Mark Osterloh>

            Comment by liz posted on

            Apologies my posts are in reply to Mark not John .

          • Replies to Mark Osterloh>

            Comment by john posted on

            why wasnt a blanket invite sent out to all carers and not just the selected few ive been a carer 26 yrs now and in all that time have never been invited to 1 of these so called for the better of carers conferences this seems to be the case across the board with many carers on forums it seems to me that the powers to be are affraid to hear the voices of real 24/7 carers and only seem to select those to attend that will give a glowing light this report is so far from reality its a pure joke
            1 carers health is oftern in danger due to fact they are left to own devices by system i personaly can only get a social worker when the crap hits the fan [ and referals etc take time ]
            2 if i fall ill the person i care fore has 0 emergency cover so therefore i cant go to hospital etc
            3 we are told to eat healthy and get exercise try doing this on £62.10 a week whilst working close to 24/7
            4 if u require anything to make life that bit easier for you or the person u care for it takes several months to get it [ due to fact once 1 thing is done care case gets closed till you need another thing then its back to square 1 yet a 15 visit every few mins would keep files upto date and speed up system]
            5 there are serious issues with care facility in uk when profit is more important than care [ more winterbourne care homes will emerge] care homes should be a.. regulated b... care before profit c...staff should be vetted to max standards pos the people in them are the most vulnerable yet are often the most easily abused in all ways this is why real carers hate the thought of using such places

          • Replies to john>

            Comment by Mark Osterloh posted on

            John - just to clarify - we were guests at this conference run by Carers UK so were not involved in organising it. I therefore cannot comment on how the speakers and audience were notified and invited. I do know that the conference was primarily for health and care professionals to meet and share best practice on how to provide better support for carers. Carers voices played a vital role of course, which is why we heard presentations from carers themselves. Thanks again for your views which will be shared with our policy team as they continue to develop a new carers strategy.

  6. Comment by Karen posted on

    If you asked all carers to add up how many hours a week they care, multiply that by the minimum wage, then you will see how much our lives change. Many do not have a life, are expected to do not just social care but health care for their loved ones, and not trained to do such tasks. I myself am expected to do this and, yes, it has been documented by my GP and consultant, being a carer is effecting my life considerably, and costing the NHS because of it. I have yet to read of a happy carer, who has a life, who's life hasn't changed for the worst. I'm in many forums, go to dementia cafes, and was part of a LG review. It also seems the lack of consistency across the county/ country is unbelievable. I feel I am doing the public sectors job, and chase, chase, chase and also having to check everything, as many mistakes are being made. The word 'care' isn't there for us carers, or our loved ones.

    • Replies to Karen>

      Comment by john posted on

      my income on that basis karen would be a whopping £53,144.00 a year at present i get a pittance of £3229.20 ohh i do love maths lol

    • Replies to Karen>

      Comment by Toxicpotato posted on

      We as carers are useful until our health gives out. We are demonised as scrounges eg bedroom tax and ignored. We are apparently able to work but no consideration given to our health whilst we work 100 plus hours a week...

  7. Comment by Toxicpotato posted on

    Cynical doesn't come into it. Did anyone ask Alastair birt where carers are going to get the energy to work given most local authorities are slashed to the bone. What support? And personally I am now diagnosed with physical and mental health problems so even if an employer were willing to take the risk on a 55 year old carer who has had to leave paid employment because of being a carer I am now in such a poor state of health I have been advised to make a claim for disability benefits myself. I sincerely hope that the minister was heckled.

    • Replies to Toxicpotato>

      Comment by john posted on

      we are in this situation due to fact we dont do contractual hours this i have in writing from houses of commons yet i had to prove that i did min 35 hrs a week to get carers allowance so under employment law that makes what we do as contractual but the government dont want this

  8. Comment by The Mother posted on

    Basically carers are treated so badly by all forms of officialdom. We are seen as a nusiance, as a barrier to their control over those we care for - oh the power trips that go on in town halls and health trusts etc beggar belief! Joe public is deceived into believing that we all get so much help and support - excuse me whilst I laugh! Where does the money go? This carer enquired about the carers grants when they first started - in the hope of getting a bit of help with the cost of educational courses - not a hope - council had diverted all the money to Crossroads who ring fenced it for respite - for which they charge - and refused to take individual applications. So the lot went to a group that only supports a minority of carers. This carer enquired about carers breaks funding when it started - and got told to make a freedom of information request! The person I care for had to nearly die and then have heightened complex health needs for us to get any help at all and the whole system of receiving that help is a living hell - private companies who persistently put their staff before the client, private companies who treat us like dirt and ignore our needs and wishes in our own home with the funding body supporting the private company all the way because we are the dirt they scrape off their shoes. Oh and we are just supposed to accept that staff will sleep on a waking night shift when they are there to keep the person I care for alive. Not in this house!

  9. Comment by Linda McCafferty posted on

    Sad is the day that power and trickery is involved on trying to get identified needs recorded in carers assessments for carers suffering mental exhaustion and burnout and are at high risk level of breakdown , the illusion of support regarding carer assessments is distressing not only in England but throughout the whole UK .

  10. Comment by The Mother posted on

    Ah - the moderator has gone to bed - whilst carers stumble, sleepy eyed, through the myriad of tasks that will need completing theough the wee small hours - never off duty, one eye open even in sleep - when sleep is permitted!

  11. Comment by Karen Robinson posted on

    Crumbling system which barely meets ANYONE'S needs. Shortages EVERYWHERE. Signposted from one organisation to another. In many places to nowhere. First come first serve services means rationing to get legal advise, fill in firms, see social worker, hospital appointments, getting adaptations in the homes, day center services,..... Major one NOT ENOUGH cares respite. Carers having to choose between eating or heating....severe poverty. Isolation. Aspiration taken away.Mental and physical health deteriation. One of the major factors, the ABUSE carers have to endure from different government agencies and the public. Discrimination against a carers and their caree are at and all time high. It dickensien and unacceptable. No human rights, civil rights, hate crime, social exclusion. It has become institutional and society neglect and prejudice. We've need a Dame Doreen Laurence to fight through this mess.You're nowhere near solving the issues. "CARISM " is my new word for the prejudice we receive!

  12. Comment by Carole Cliffe posted on

    I have been a carer for 27 years and have yet to experience any consistency or actual practical support or actual improvement in performance from local authority "SERVICES" or charities (with the exception of JRF and a disabled gardening trust). Indeed the smokescreen and endless stream of vote seeking government driven rhetoric is all that exists. Gaining ACTUAL PRACTICAL SUPPORT is an adversarial battlefield and never forthcoming rather the opposite Carers "are in this alone" there is no we are in this together just resentment by the state and society in giving us support with our set of circumstances. .....The most support i was ever offered in the first 20 years was a blanket 10 hours support upping to 24 after a two year battle. My son was left traumatised from his time in respite with the net outcome he refused to return nor would i given the practices i unearthed happening in there. To say our tone is toxic as yourself why we are all reasonable people who have been marginalised into poverty through no fault of our own. We have to sit back without comment and watch Charities who lets face it are making funding on the back of our set of circumstances waste money and remove services that are no longer "profitable" putting further pressure on us to come up with solutions. Indeed most charities in my experience appear to care more about their own survival and payroll rather than ensure the contributions donated are spent on the very people they were raised to support. With a little redirection of funds from the able to the disabled things could change so quickly for us carers. Indeed poor performing councils just bumble along constantly seeking to withdraw funding due to their serial mismanagement should we Carers be accountable for that? Its a post code lottery. Charities can afford massive property investment and rebranding/restructering into "campaign" charities (i believe scopes was in the region of 4 million) yet spend limited amounts on services and only if it makes a "profit" has the world gone mad!!! Giving hope where there is none is the crueller act as is experiencing solutions that constantly and disproportionally remain in the self interest of the authority/state and serve to marginalise you further into poverty. When seeking appropriate assessments based on medical evidence (not the whim of a social worker with an eye on the budget) carers experience being bullied and harassed alongside being misrepresented as scroungers. The emotional blackmail is horrendous you are made to feel a burden as is your loved one yet with the right support and the breaking down of barriers the experience could positively change in the blink of an eye. I love the person i care for and will always go the extra mile to ensure care is person centred in a stimulating environment that supports maximising their potential he is 27 so for him his rehabilitiation is life long unlike our elderly population.......... yet he is treated and assessed in the same vein as them. He will never be able to take self responsibility and is being throughly punished for that...........wouldn't it be refreshing to experience a culture in society which rather than resent that instead come from a place of empathy or understanding.Yet we have a government hell bent on fuelling that image and our self proclaimed supporters making money on the back of our circumstances do they challenge that perspective do they heck more worried about loosing funding and jobs than anything related to our set of circumstances............and you wonder why we are cynical get out of the ivory towers would be my advise..........

  13. Comment by Gill posted on

    At every single interaction with SS/NHs the first question is "Do you own your own home" and being told to have a financial assessment, this is before any care assessment or carers assessment, this is the norm although apparently against the Care Act, no-one is bothered. No-one checks the validity of what is reported during interviews with social workers etc, What is often written in files bears little/no relationship to the truth, strangely many/all things seem to reflect the carer in a bad light. Where does the money go? I asked as a FoI request and it seems not to go in the direction of carers, why does a charity only provide care if they are paid £13/hour? Has anyone looked at what these so-called carers charities do with the money. A nice boat trip lasting a couple of hours, no respite care though - that 'free' boat trip would have cost the carer around £100 to get replacement care, this sort of thing is for the wealthy only. A carer who makes a complaint about an individual eg SS, ambulance, nhs risks having a safeguarding complaint made about them, this is recorded on System One on the carees file, the carer is not told nor is there a record on System One that the carer made a complaint, this is disgusting it creates a system where a case is built up against an innocent carer. Carers are not second class citizens they are far lower down the food chain than that. I attended a county 'carers conference' some years ago, they compiled a chart like the one shown above with carers opinions (most actually came from carers 'charities' who seemed to make up a large number of the attendees, presumably if most carers who heard about it couldn't go because they were caring. The most useful comments came from a man who said that all the 'charities' provided the same information usually benefits advice, they would refer to another 'charity' who then referred to another, eventually he was referred back to the original 'charity' still not getting his question answered. The person who was in charge of the Carers Strategy in that county gave an impassioned speech about how things would change for carers. Did things change? No, not one bit. In over 10 years we had no practical help whatsoever, or as the SS and 'charities say "nothing in your area". If the government or anyone else who gives money 'for carers' wants there to be change, then set up an investigation into where the money goes. Have a look at the SS and 'charities' who travel around in pairs = 2 salaries plus mileage allowance, yet provide no help whatsoever. Have a look at the value for money of Dementia Cafes, the people who need the help can't get out to go to these 'Cafes'. It ends up with carer breakdown, ill health, unemployable with an uncertain future. Is that the name of the game, carers have their lives shortened by caring, die much earlier so save money in future social care?

    • Replies to Gill>

      Comment by The Mother posted on

      Well said Gill! The bullying, harrassment and intimindation from all factions of officialdom is horrendous. Carers who complain or disagree with officialdom are labelled as 'refusing to work with us' when the reality is that it is officialdom that refuses to work with us! Safeguarding is unleashed upon complaintants as a weapon of revenge. Private companies who supply care/support think they own us - and that trickles right down from management to care workers. Imagine being in your own kitchen at eleven o'clock at night, trying to make a quick sandwich because you haven't had time to eat in twelve hours, in marches the care worker and DEMANDS that you move out of the way (in your own kitchen!) because she wants to make a cup of coffee! Oh the joy of a coffee break when she's only been on duty for an hour! 😉 THAT's how much carers are worth to anybody involved in officialdom or profiteering care companies - carers aren't even allowed the time to eat!

      • Replies to The Mother>

        Comment by Gill posted on

        ... or when carers make negative comments about the age of your kitchen, tell you that your entire home is the size of their living room or that you should lose your home to pay for care of a loved one. The list is endless, any carer who challenges this risks being reported for safeguarding, anyone who hasn't been in this situation would not believe it could happen. Carers are bullied by all they come up against, the perpetrators do this because they know they will get away with it.

  14. Comment by Karen Robinson posted on

    Hopefully the above will give the policy makers a succtint version of events without any future seminars and questionnaires.
    Tell Cameron to pull his fingers out of his ears and get to the ground level.
    Top down policy making is antiquated and not progressive.
    Now will you tell my local authority to get my carers assessment approved by "the panel "?

    • Replies to Karen Robinson>

      Comment by Gill posted on

      Whoever is responsible for policy making should contact all of us, we are the face of caring that you don't here. By talking to us directly you will not only put in place a better system (hopefully) but we could tell you how to cut out the dead wood and save you money.

      • Replies to Gill>

        Comment by The Mother posted on

        Certainly ALL carers should be contacted and have their voices heard - not just the select few that CUK know will be good little children and only say what CUK wants them to say! Ye gods CUK doesn't represent all carers - indeed it deliberately excludes those who have something worth saying. CUK is NOT our voice - we are our voices and we know the reality of caring - which is much more than CUK will ever know. By snuggling up with CUK you exclude the majority of carers!

  15. Comment by john posted on

    mark you mean that the conference was a jolly for the select few those who have means and funds to self support so meed min help not the average carer who lives a life of solitude being shunned by most of society and care professionals alike and the fact you state that this jolly was run by carers uk just goes to prove it they are meant to represent us yet we find it hard to find 1 person in the normal carers circle to say they got a invite so if our representative body dont care how do we expect others to care id like to see half the members of this forum to attend and let the real truth out and not just the governmental yes people who seem to be the only ones ever invited because on the face of it all is well and fine with carers in uk but as this wall now shows it is far from ok in fact id go as far as to say it is sheer disgusting and con tempting the government and its paid lackeys are failing the most vulnerable in uk daily but id like to point out 1 fact that hasn't been addressed yet if every carer in uk quit what they do now the uk would have to fund the care to a tune of over £9 billion a year at the current prices for 24/7 specialist care [for many ] but also they wouldnt have enough places to house all the disabled we look after so the hospitals would get clogged doing what we have to daily till places built [thank god we do this for love ] carers in uk could cripple nhs and uk finances and maybe this is the route we should take to get what is owed to these vunerable people who never asked to be disabled and there carers

  16. Comment by Caroline alexander posted on

    Another conference another tick box exercise, year after year, oh let's do another assessment let's hold another conference, walk in my shoes, nothing has changed in the 19 years that I have provided 24/7 care, actually that's not true, it's worse now than it's ever been, but let's hold another conference anyway, paper shuffling exercise to con people into thinking disabled, the elderly and carers get so much help. I give in, but that's what they want, give in shut up and just get on with it. While what's really going on is empire building, and we the people who save the government billions a year are being run round in circles to get little or no support, being bullied by social workers being told there's no money to pay for support, could go on forever but really can't be bothered

  17. Comment by Mark Browne posted on

    Good afternoon everyone. I thought some comments from the policy team in the Department of Health might be useful. I'd like to reiterate Mark's comments above that we most certainly are actively seeking out and listening to all comments and views - however critical of the current situation, or indeed of our work (or of my work). If we do not listen to what's going wrong, how can hope to improve anything?

    Please be assured that any comments left on this page will be considered alongside those received via our online call for evidence. We have over 3000 replies to that call so far - the vast majority being from carers. So I believe that we are hearing a genuine cross section of carers' experiences and frustrations.

    I certainly found the Carers UK event valuable. Like Mark I met with a number of current carers there, and I have learned much from speaking with Helene and her team. But Carers UK are one of many groups we are working with - and they are (quite rightly) entirely independent of the Department. I am sure they, like all representative groups, would agree that hearing directly from carers is the most important source of advice and information. That is why we have invested time and energy into this forum, the online call for evidence, and supporting conversations in local carers' support groups.

    I would not seek to compare my working day with the experiences that some commenters have described above stemming from their caring roles. But in the Department I work alongside colleagues of all ages with experience of family life and caring with all its highs and lows. Carers are a diverse bunch - and so are civil servants.

    Please continue to use this forum - and tell me what I need to know, and what I need to consider.

    • Replies to Mark Browne>

      Comment by The Mother posted on

      Sorry to be so slow responding Mark but I have been wearing myself out ensuring that the person I care for enjoyed herself at an annual event that is one of her passions.

      I think you will find that the general criticisms of Carers UK stems from the fact that most carers see them as ineffective and oft times unwilling to actually take up the issues that really matter to carers. For years they have been the only group publicising and communicating with government about carers - whilst actually excluding carers themselves. The things they publicise and communicate with government about are frequently the issues that they choose. Quite simply they are not truly representative of carers.

      It is high tme that carers were listened to - but we have long since given up hope that Carers UK will do that!

      Your new initiative and consultation gives some hope. But please look at the list on the left of the screen for the consultation. That is the list of those the consultation is aimed at. Carers are way down the list - which sort of says something about how undervalued we are in official circles. And yet you all seem to be wondering why we are cynical!

  18. Comment by Carole Myall posted on

    Carers need unified action and non violent protest we are used abused and discarded.

    I became ill as a carer no help but threatened with imprisonment.

    It is wrong that carers are criminalised if they get ill, and end up in prison.