CarersBlog

carersblog.wordpress.com

About this blog

This blog is run by Carers Trust Policy Team. Together with our Network Partners, we provide support, information, advice and services for the millions of people caring at home for a family member or friend.

We ensure that the issues affecting carers are taken to Government, and sometimes, just sometimes, they listen to us and change things for the better. And sometimes they don’t but that’s life. But there’s often a story to tell along the way.

If you would like to support the campaigning and support work we do for carers, you can donate here.

43 Comments »

  1. Hi Gordon

    Enjoyed the blog and it gives a greater insight to what you do and what is being achieved. Well done – keep going.

    Comment by Shauna | August 6, 2009 | Reply

    • i wish someone would listen to me i would rather be dead at this moment than caring for so many family with NO financial help.

      my 96 yr old mum had just died.

      my 89 yr old husband cant get cataracts done.

      my daughter is back here and i’m on the edge.

      judy arliss

      Comment by Judy Arliss | September 18, 2011 | Reply

      • Hi Judy,

        We noticed your comment and thought we’d just send a brief reply. We’re really sorry to hear about everything that’s been happening; it’s no wonder you’re struggling to cope at the moment.

        Have you had any contact with a local carers’ centre? Because this could be a way for you to get some help and advice about your situation. If you’re not sure where your nearest centre is you can use the search facility on our website to find it: http://www.carers.org/

        Carers often find they feel isolated and that this can make things seem even harder to cope with so we hope you have friends and family who you can talk to. You might also like to consider joining our online community as talking to others who really understand what you’re going through might help to reduce the isolation and make life a little less stressful.

        We hope things get a bit easier for you soon Judy.

        Online Support Team,
        Carers.org

        Comment by Susannah | September 20, 2011

  2. He listens to you does he – how’d you manage that?!

    Nice photo though – at least you have one eye open unlike other members in the family that shut their eyes to have photos taken.

    Anyway – good job – keep it up- you are making a differnce.

    Comment by Linds & Gordon | August 6, 2009 | Reply

  3. Hi Gordon

    Great blog mate, you know you have made it when they allow you to do a blog eh!!!

    joking aside, you are doing a great job and i am proud to say i have your aquintance. Many rights to be righted for Carers in this country and when it comes to political skills and requirements for this process, carers have a realible advocate in you.

    good job, keep it up and we need to catch up soon

    Stewart

    Comment by Stewart McFarlane | August 10, 2009 | Reply

  4. Hi Gordon.
    I have been a full time carer for over twenty two years, in that time i have had only one full time break, that wa s18 years ago. I have been told that my wife could go into a car home for a week, but none have the the things that are a must such as a closomat loo electric chair and bed.
    When i have asked why someonecould not stay in our home i get the word cost bandied about, i am sure i could get a retired nurse to live in for a week.
    I am sure there are many others in the same postion as me, i am 71 and fairly fit but this is problem that no one seems to want to tackle.
    Regards.
    Michael

    Comment by Michael Cornell | August 23, 2009 | Reply

    • Michael Hello,
      I too am 72YRS SO KNOW HOW AGE ADDS TO THE STRAIN.
      which Local authority are youresident in?

      Lack of money is always said to be the problem but not always the truth as the system is not always explained accurately!!

      If you want to contact me and I can pass on anything I have found out then mail me on my email above.
      SUE
      Llantrisant Mid Glamorgan

      Comment by Sue | February 28, 2010 | Reply

  5. I enjoy reading your blog Gordon….Anything to raise awareness to the plight of 6 million carers should be welcomed…

    Comment by Graham | September 13, 2009 | Reply

  6. hi,
    I am new to this site and new to post as a Carers Champion and any information on the Princes Trust for Carers and Royal College of GP Self Assessment Tool Kit would be most appreciated and i am going to be championing this for Mid Essex PCT.
    Thanks

    Comment by Rachael Willis | September 21, 2009 | Reply

  7. Amazing Article , I considered it marvelous

    I look ahead to more similar postings like this one. Does your website have a RSS I can subscribe to for new postings?

    Comment by glusapFup | November 23, 2009 | Reply

    • Hi glusapFup, thanks!

      You can subscribe to the blog by RSS. See under ‘Subscribe by RSS’, just scroll down and look on the right.

      Comment by Gordon | November 24, 2009 | Reply

  8. Liking the blog very much and hope it raises awareness of carers and their often overwhelming difficulties.

    Comment by Lynne | November 24, 2009 | Reply

  9. It’s not only the curtailment of services that causes problems but the lack of any prior notification. I’m 80 and the sole carer for my wife, 78, who has dementia. I do have AM and PM help and a once a week trip to the day hospital is a welcome break…but… the DH used to give my wife lunch, it was some time before I found out that they’d stopped doing so and that I was letting her go hungry; she used to go at 8.30 AM and return at c.4.45 PM, now it’s 9.00 to 3.00 PM – incidentally the staff at the DH are fine and no blame attaches to them.

    There are also problems which affect rural areas particularly: like, I gather, many trusts our local NHS has withdrawn respite support. Try identifying a suitable home from the few within an area of about 30m radius – not much choice and a long, wasted journey to check each possibility and tiresome if the ‘target’ has let their available room to a LS resident in the meantime. The lack of any chance to plan a break, the stress of constantly having to look for new accommodation and the impossibility of my wife’s forming any relationship with staff make it almost useless to attempt a break.

    The result? On Thursday I had a breakdown which left me lying on a wet footpath until some kind souls picked me up and gave me a lift to the doctor (who understands, and does what he can ).

    North Yks CC keep some sort of a register but it’s very inadequately organised and the national Quality Control people have poor judgement or are easily hoodwinked.

    Please, ahead of the election, let us carers squeeze what clear undertakings we can out of the main parties and vote as a group – indications are we could make a difference.

    Comment by John Grove=Stephensen | December 2, 2009 | Reply

    • John’s post was written in November 2009, when he had almost written breaking point. That point arrived with a very nasty stomach bug in January 2010, when he could not feed or tend his wife and she had to be taken into hospital as there was nowhere else for her to go.

      A few days later John’s doctor took the opportunity to get him in to hospital for some tests, which should have done months earlier – if only there had been somewhere for his wife to go whilst he had the tests. Five days later John was told that he had cancer of the kidneys which had already spread and was now beyond treatment.

      Four weeks later he was dead.

      The strain of caring and the impossibility of finding somewhere for his wife whilst his own health was attended to were major factors in the destruction of his life.

      This is the reality of our failure to prioritise respite care. A carer’s own health is what keeps many desperately vulnerable people looked after by people who love them in their own homes. From an economic point of view is the cheapest solution to caring for the elderly – the cheapest by a very long way. It is often also the most humane and welcomed solution.

      Though it is cheap, it NOT free. There are some things which a carer may not be able to do – particularly if they are sick or elderly themselves. Help in the home for washing and dressing, for example. Their own needs must be met too.

      To keep the carer going they need one day off a week and one week off a year as a minimum. That “one day” is often needed for shopping, trips to the dentist, ringing the council about problems with organising the other help. The “one week” is time off to feel the burden of responsibility lifted for a short while, for people who are otherwise permanently “on call”.

      Failure to support carers can end up with the one cared for in a hospital bed for weeks as “bed blockers” because the carer has been all used up.

      A relatively small investment in the physical and mental health of the carer saves the country a massive amount in taking someone sick or disabled into permanent residential care. Ignoring this fact is a sensible as refusing to pay out servicing and maintenance costs. Family carers are our only hope in difficult economic times and letting them die of exhaustion and neglect is not just inhumane – it is STUPID.

      I watched this avoidable situation with despair as John Grove-Stephensen was my father. I watched it with fear, since I too am dependent on care by my husband.

      Comment by Philippa | October 7, 2011 | Reply

      • Edit – I meant written in December, not November. Perhaps an edit button?

        Comment by Philippa | October 7, 2011

      • Dear Philippa
        I won’t be alone in feeling enormously sad when I read what your mother went through, and then what happened to your father. It is unbelievable that your father wasn’t notified when lunch was stopped being given. I know you have read our report on the problems facing older carers http://www.carers.org/news/devastating-impact-health-older-carers#comment-849 and we are determined to keep pushing this issue. I’m sorry what your father went through.

        We also wrote another report discussing the very things that you brought up in your comment. It doesn’t make sense to leave carers to do everything by themselves as in the end, they can break under the pressure. You can read that report at: http://www.carers.org/news/supporting-carers-could-save-billions-public-purse

        I do hope that you and your husband are getting the support you need. If you’re not in touch with a Carers’ Centre already do have a look to see if there is one nearby or a Crossroads Care scheme.

        You can find your closest Carers’ Centre by putting in your post code:
        http://www.carers.org/carers-centres/find-your-local-centre

        And likewise for your closest Crossroads Care scheme:
        http://www.crossroads.org.uk/index.php?mid=21&pgid=141

        Good luck Philippa
        Gordon

        Comment by Gordon Conochie | October 11, 2011

      • Gordon

        Thanks for your words of sympathy. You can imagine how I felt when he told me about falling on the way into town during the spell of bad winter weather and finding he no longer had the strength or the will to climb back on his feet. I shall always be grateful to those unknown Samaritans who stopped their car, picked him up and took him to a doctor.

        One point I need to correct, just in case anyone who knows John reads this blog. The wife he was caring for was his second wife (and a thoroughly Good Egg). My mother is still alive and relatively well and able to give my husband a break from time to time – but relying on a woman who is nearly eighty for respite care is not a sensible long-term plan.

        We must start to get a backup scheme in place.

        Comment by Philippa | October 13, 2011

  10. what about the unpaid over sixty five carers, we seem to be right out in the cold, i have brought this up before i know, i presume one of the reasons for this is it’s a hard nut to crack, there are not a lot of miles in the old.
    The likely cut backs in the coming months will be an even bigger worry for us.
    Our area is allready being affected, no checkup visits by social workers just a lot paperwork to fill in, we did have help from them, to many of the staff they hire are not interested in the sort of work we want done, so we have to
    pay for our own.
    Regards Michael.
    PS it is a good blog

    Comment by M J Cornell | December 2, 2009 | Reply

  11. Hi, Gordon Conochie,i have recently completed my NVQ LEVEL 2
    I am looking for voluntry leading into full time work as a carer or similar …can you help me/guide me pls !!
    I live in the barking essex

    Comment by vijay | December 8, 2009 | Reply

  12. Hi, i have recently become really interested in working as a support care worker, due to my ex girlfriend being a care support worker and listening to her discussions about her job etc. Plus i have recently become unemployed so i thought i would give it a go, so i made some enquiries at my local area office in Barnsley and i have an interview this coming monday. I was wondering if anyone could give me some advice or a little insight into the job as although i want to do this, i just feel a little apprehensive being a guy going into what seems to be a predominantly female industry.

    Comment by Brian Huxley | December 11, 2009 | Reply

  13. Dear Gordon, Have just asked for support from a local care organization. I would be useless in any political approach to caring issues but I am glad someone took on the job. My adult children help my husband not just me.As the disability involved is highly individual I am not sure what would work anymore but people able to speak on behalf of all carers, well, good luck Sandra

    Comment by Sandra Hennessy | February 23, 2010 | Reply

  14. hi im a young carer my self and im only 10! i know what its like to be a young carere im liveing in cwmafan thx for all suport cross roads by the way love the blogs!!!

    Comment by cariad geach | May 15, 2010 | Reply

    • Hello Cariad

      Thanks for your post. We’re really glad you like the blogs. Have you been on http://www.youngcarers.net? This is our interactive website where you can get lots more information, support and advice online and meet other young carers in similar situations across the UK.

      Thanks again for your comments and take care,
      Danni

      Comment by Danni Manzi | May 18, 2010 | Reply

      • thx havent been on th blog for a while thx for telling me about the web site im happy now can u tell me if u have herd about these illnes’s one of them is Fibromyalgia and the other is ocularjiririckrisis well im not shure hot to spell it sorry ive got lots of friends because of crossroads

        Comment by cariad geach | June 23, 2010

  15. […] father’s doctor, and his social worker, which is great. But for those in a similar situation, Gordon Conochie, who is joint policy and parliamentary officer for the Princess Royal Trust for Carers and […]

    Pingback by Problem solved | United Kingdom Society News | May 30, 2010 | Reply

  16. My husband has throat cancer but has a trachy so he was quite pleased to find that with a few months to live having a ciggie is possible and is not going to affect anything now, and the smoke does not come out of his ears. He also enjoys a small glass of cider every now and again. Unfortunately the smoking meant we did not get off on the right foot with Marie Curie nurses so will be appraching our local Crossroads in Oxford

    We need (CV’s welcome!) somone who doesn’t mind smoking (and could have one if they wanted), won’t faint or throw up at the sight of a trachy tube who can lip read perfectly as hubby can’t speak and can give me 8 hours sleep a night. Not much really. Is it?

    Comment by Tracy | September 10, 2010 | Reply

    • Hi Tracy
      I do hope that Crossroads Care Oxfordshire can help. In case you need them, their phone number is 01865 260280.
      Good luck finding somebody – and getting that 8 hours sleep! One day maybe?

      Take care
      Gordon

      Comment by Gordon | September 13, 2010 | Reply

  17. Hi Gordon

    Seems like a positive result concerning Carers Allowance! I think it’s important to mention that if someone who is cared for receives Attendance Allowance that also counts as a qualifying benefit, subject to the fulfilling the other criteria for Carers Allowance, of course. It isn’t just DLA.

    Kind regards

    Andrew

    Comment by Andrew Storey | February 18, 2011 | Reply

  18. Hi Gordon,
    I have been trying to research your young carers website http://www.youngcarers.net. I found some statistical and policy information but it is harder to finding the referencing of where the information was obtained on the website can you help

    Eileen

    Comment by Eileen | August 25, 2011 | Reply

  19. Hello Eileen

    Thanks for your message. I’d be happy to help: if you email info@carers.org with the information you need sources for and mark it for my attention, then I will aim to get you the information you need.

    Thanks
    Danni (Manzi)
    Young Carers Lead

    Comment by dannimanzi | August 26, 2011 | Reply

  20. my wife is terminaly max 6 months left i have had rapid response nurses until now they have been with drawn and i am informed i have to full price for further assistance
    she needs palliative care but i still have to pay why did we pay national insurance all our lives the government decrees carers allowance of £73 per week is this what i should offer the agency

    Comment by bernard law husband | October 4, 2011 | Reply

    • Hi bernard – I’m so sorry to hear about your wife’s illness. Sounds like you’ve got a tricky situation going on there with the care package you’ve been offered. Have you had advcie from a local carers centre or other carers’ agency? If you send me an email to mfraser@carers.org with your postcode, I can put you in touch with someone who can talk this through with you.
      Moira

      Comment by moirafraser | October 10, 2011 | Reply

  21. Hi Bernard
    I’m really sorry to hear about your wife, and the lack of support you are getting.
    We do have local Crossroads Care organisations and Carers’ Centres that may be able to provide advice and assistance.

    You can find your closest Carers’ Centre by putting in your post code:
    http://www.carers.org/carers-centres/find-your-local-centre

    And likewise for your closest Crossroads Care scheme:
    http://www.crossroads.org.uk/index.php?mid=21&pgid=141

    Do e-mail us at support@carers.org if you would like to speak to somebody about your situation.
    Take care
    Gordon

    Comment by Gordon Conochie | October 10, 2011 | Reply

  22. Can somebody please help me here.
    My father has Parkinsons, and after a fall had to go into hospital for a partial hip operation. To cut a long story short if i can he then contracted MRSA due to neglect and lack of care. He was in hospital for some 5 months and has not been home for over 3 months. Mum has Alzheimers. My sister could not cope alone, and so I had to leave my home, my job and my partner in Malta where I had been living, in order to come back to the UK to care for my parents.
    I have not been here over 3 months. I applied for carers allowance and because of a 26 week Past Present Testing was unable to claim CA. I have been told that due to the fact I have not been living here consistenly for that period of time in the last year my case will not be reviewed until end of November.
    Income support would not help because ‘I was not in receipt of Carers Allowance’.
    I have been desperate with no means of income whatsoever. The caring my parents need is 24 hours a day 7 days a week.
    To ‘pop’ up the shops has to be planned. If I have a personal doctors appointment this too has to be arranged.
    How on earth please tell me does one cope in this situation.
    My parents have both worked hard during their lifetime and I am trying to do my best for them, but it is depressing with no support whatsoever. Im at my wits end not knowing what to do and with no means of income.
    I was refused jobseekers allowance because of the fact that I cannot accept a job due to the situation.
    Can someone out there please give me any advice at all. It would be most appreciated.
    With the lack of sleep and the frustration of chasing hospitals, doctors, nurses and Social Services, I feel as though both myself and my sister will have a breakdown in the near future.
    Thank you and well done to all you carers out there. You are doing a fantastic job, and I really dont know how you manage. It is not an easy decision to give up everything and become a carer, and unfortunately our government deems fit to assist other countries before its own needs.

    Thank you for reading this.

    Sharon

    Comment by Sharon | October 27, 2011 | Reply

    • Hi there Sharon,

      I work in the online support team here at http://www.carers.org.
      This sounds like a horrendous situation that you’ve found yourself in, you’re obviously wanting to do the very best you can for your parents but this is leaving you without any means of financial support which just doesn’t seem right.
      Unfortunately we don’t have the expertise in the benefits system that your particular situation requires but we’d strongly recommend you make contact with your local Carers’ Centre if at all possible (details of how to do this are in the post above yours). They would then be able to sit down with you and look at your circumstances and help you to navigate your way through the complexities of the benefits system.
      In addition they can provide a vital listening ear and support system when you need it which is sometimes just as important as the practical advice.
      You might also find it useful to join our online community at http://www.carers.org as the carers who use the discussion boards have a wealth of experience and may well have some advice or information that would help too.
      I hope that helps a little

      Sam
      Online Support Team

      Comment by Sam | October 27, 2011 | Reply

  23. as a carer i am campaging to get the carers allowance increased from£55 per wk to a better payment of £105 per wk on top of the £83 of income support as i and many carers cannot afford to live on this amount of money this goverment says we can live on.
    we save the goverment millions of pounds year by year by doing what we do 24/7 365 days a year. i am 42 years of age and look after my mother who has been ill ,now a little better but still needs care. she has a weak heart and damaged lungs as a result of tb.
    she also has athritus and curvature of the spine in which prevents her from doing much but while i know what we do and the care we give is out of love and duty it would be good if the goverment takes notice of our good hard work and listens to us and raise the allowance to a better rate so that the carers do not have to worry about there finances so much and wonder how they are going to pay for there bills and perhaps save for a much needed holiday . i have writen to both partys and my local mp and the mirroe paper but it seems they do not care if you look in the papers there is no mwntion of us in the house of commons we are the forgotton section of the uk and i would be willing to stand up in parlement and tell the so on behalf of all us carers. thanks roger p barfield

    Comment by roger barfield | December 1, 2011 | Reply

  24. Hi Roger
    Thank you for leaving the comment.
    It sounds as though you have given huge amounts to care for your mother and you should receive the proper support that you need, and deserve. Carer’s Allowance is simply not enough and there is no justifcation for it to be lower than every other benefit.

    The country is obviously in quite a lot of debt but increasing support for carers should be a priority. It is unlikely that they would consider increasing it to £105 p/w, but we do have to continue campaigning for it to be increased. There are too many carers using all of their savings and going into debt because they have had to give up work and cover costs of care.
    I wish you the best Roger
    Gordon

    Comment by Gordon Conochie | December 1, 2011 | Reply

  25. 9.I have been a carer for over 20 years and worked for the last 10 years for the minimim wage doing 16 hours a week,basically to keep my sanity the last time the minimum wage went up it was April and it meant my wages were going to be over the amount i was allowed to earn which at the time £95 per week this was going to rise to £100 in the following October. I was basically caught in a cach 22 situation cos if i dropped my hours in work i would lose my working tax as i would not be doing the eligable 16 hours, i could not continue with work as i would be over the £95 which you were allowed to earn. This meant between April and October i was caught in a no win. I went to the local job center for advice and there only advice was for me to not work. I could not leave my job as it was my only means of paying my mortgage as they told me if i left work i would not be eligible for any help. I ended up changing my days in work and on one of the days i worked i paid a neighbour £10 to take over my caring duties so it took me under the £95.

    Because of the stress of caring and unexpected outgoings i lost my home as i couldnot afford the payments on it.
    I now live in rented accomadation, i have had to leave work as if i work i will get no help from housing benefit i would just be working to pay my rent, yet if i dont work it will get paid for me. Basically its stressful as a carer at the best of times but because of the benefits systyem its not worth me working which i would really love to do. I now live on £94 per week and stuck in a rut to continue my caring i hardly see anyone and my social life has now gone (no work, no social life, no money) I remember the day when the carers allowance was not means tested and you were a bit better off and also felt as if you were worth something, now i feel useless and the future sure looks bleek!

    Comment by Donna | December 13, 2011 | Reply

  26. Hi Donna,
    I think people reading what has happened to you will be shouting “aaargh” at the computer. How can we have things so wrong that somebody who wants to work and wants to care is being punished?

    The Government are changing this thankfully so that carers who begin to earn over that threshold will not have their whole allowance removed but it will be reduced by a proportion. This should mean that if you do end up earning more then although you may get less of a benefit you are still in a better position.

    The Welfare Reform bill of which this is a component is currently being debated in Parliament and has not yet been passed, and there are a few contentious elements within it that are unpopular.

    I hope your luck turns soon Donna.
    Take care
    Gordon

    Comment by Gordon Conochie | December 14, 2011 | Reply

    • Thankyou

      Comment by Donna | December 14, 2011 | Reply

  27. I hate to read tales of carers struggling to cope and urge people to take a look at this great charitable resource http://www.curahq.com. it will help you share your workload. it is a non profit organisation and is completely free. it is worth taking a look.

    Comment by Neil Burgess | May 18, 2012 | Reply

  28. Very well written blog. I will bookmark this site.Post like yours makes the reader want more. Looking forward for your this type of new stuff. Kudos to you Gordon.
    self adhesive foam sheets

    Comment by stephenflaming | June 18, 2012 | Reply

  29. Hi! Very nice site!

    Comment by Duesgraigue | March 13, 2013 | Reply


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