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Carers blog

The NHS Choices community where carers share their experiences, ask questions, get advice and discuss their situation with other carers.
  • Paul Burstow has written an article praising carers in the online Lib Dem Voice.  If it wasn't so patronising it would be funny!

    I left a comment but it always a possibility that they will delete it because they won't like it!

    So I'm posting it here for your benefit - just in case!

    Oh Mr. Burstow the only person you are fooling is yourself!  I e-mailed you about some of the horrendous issues surrounding the abuse, by authorities, of the mental capcity act - I just got bog standard responses that amounted to total lack of interest.

     

    In October we were at Cheltenham Literature Festival and attended Nick Clegg's event.  I asked him about the bullying and intimidation that carers are subjected to (through the abuse of the MCA, COP and safeguarding procedures) when they dare to complain or challenge authorities (NHS / SS /etc) when said authorities are wrong.  Mr. Clegg jumped on that and publicly (on stage)  said that he wanted to know about it.  His 'people' took my contact details and I heard nothing.  I chased it up by letter and got the bog standard total lack of interest response.

     

    For the last 8 years I have desperately been trying to get a health issue my daughter has addressed.  Problem is that because she is disabled doctors aren't interested.  Eventually matters came to a head in 2008 and I was put in a position where I had no choice but to make a complaint within the NHS.  In retaliation the NHS made false and malicious allegations against me to safegaurding and ever since then these people have been systematically bullying us and destroying our lives.  The health issue is still undiagnosed - they feign interest and then do nothing.  Their only interest is to try and cover their backs.

     

    Why am I typing this at 1.25am?  Because as my daughter's sole carer I am still up 'supervising' as she is not too well tonight.  She is having a doze at the moment but when she wakes up soon I will deal with medication (including an injection), deal with personal care issues, get her into nice clean PJs, feed her, then 'supervise' some more  - it's going to be a long long night for me whilst you and Mr. Clegg sleep on.

     

    Carer's rights day?  You may not have noticed but we don't have any rights!  We are abused by every form of authority that exists.Tomorrow will pass us by and you will all continue to display a total lack of interest.

     

    Sleep well - this carer was reported to safegaurding for daring to sleep - and when I do sleep these days I have nightmares because of all the bullying that I am being subjected to.

  • As carers we are the ones who best know the person/people we care for.  We might share experiences to help each other, we might pass on information that we have found useful, what we do NOT do is think that our experiences qualify us to assess and judge other people with disabilities /illnesses and their carers/families.

    So why does a doctor's receptionist who 'had' a disabled sister think she is entitled to do so?  Why does having a disabled sister qualify a doctor's receptionist to pass judgement on the ability and intellgence of a physically disabled person?

    It doesn't!

    But the receptionist we encountered today thought that she was entitled to discriminate against my daughter by, quite nastily, assuming that her physical disability means that she has no mind of her own.  She insulted my daughter by implying that she could not communicate her wishes and she insulted me by accusing me of 'answering for her' when I had no such thing and never do.  Apparently having had a disabled sister means that she 'knows how it works' - in truth she clearly knows nothing!

    No two disabled people will be the same even when their diagnosis is the same.  Individuals will be individuals and my intelligent daughter is extremely offended by the attitude of this woman.

    We were neither of us impressed with the other receptionist either - she held the office door at the back of reception open so that the whole waiting room could hear her shouting at me down the corridor - a deliberate act that was intended to demonstrate her power and authority to everyone in the waiting room.

    These two would be better employed at the end of the dole queue!

     

  • This month on www.carers.org we're thinking about friendships. I recently had the huge privilege of meeting up with one of our young adult carers because she came to speak at a training event for Comic Relief staff that we were running. On the way to the venue she was frantically texting and chuckling at messages she was receiving from two of her friends who also happen to be young adult carers. They are all in very different circumstances; one lives on her own but still cares for her mum, one has started uni but remains living at home to help out with her younger sister with Down's Syndrome and the other lives with all her extended family, several of whom have illnesses and health conditions. Whilst they talk about all the kinds of things that other 19 and 20yr olds chat about - music, telly, gigs, clothes etc, the thing that brought them together was their caring roles. What I love about this particular friendship (created and maintained online and by phone - they've never met in person!) is that there is no need for them to have to explain things to one another with regards to their family situations, they just "get it".

    And isn't that what makes any good friendship worth having? That you don't have to keep explaining who you are or what shapes your daily life, they just know and accept it as part of who you are.

    On the flip side of this of course is the isolation that many carers report - how hard it can be to maintain friendships when demands on you and your time increase and the effect this can have on friendships. How people don't quite know what to say or do, or even how to make conversation with you when, to be brutally honest, one day can be much like the next. It's so crucial then to be honest with your friends about what they can do to help - whether that's coming to yours for an evening because you can't leave the person you care for alone, or making time to chat to them on facebook if you can't meet up face to face or ensuring that you use any respite care you have to at least try and meet up for a quick coffee. Because those friendships really can be a lifeline can't they?

    And if those friendships do fall by the wayside then carers' centres offer a vital opportunity to meet up with others in similar circumstances. Online communities, Twitter, Facebook and sites like Carers.org enable people to make friends in a way that perhaps does fit more easily with the demands of being a carer. Whatever the situation, we all need our networks and our friends!

    If you're interested in raising awareness of carers' issues and use facebook then you might want to share this new app with your friends so they can see how caring might affect them https://apps.facebook.com/who-cares-for-carers/

  •  

    At Carers Direct, we like to innovate how we communicate with our users.

    Our new webchat and the forthcoming content syndication ‘widget’, are just a couple of new ways by which we are trying to get information and advice to carers and support organisations, local authorities and more.

    Next week we are going to be trying something we’ve never done before – a live Twitter question and answer session.

    On Wednesday 21 September, between 1pm and 2pm, two of our Carers Direct telephone helpline advisers, Gemma and Cathy, will be answering questions and giving advice via our Twitter account.

    For those who aren’t familiar, Twitter is an online social networking and ‘microblogging’ website.

    People, charities and businesses all over the world use it to share information quickly and easily – all in 140 characters or less. 

    It all happens in ‘real time’, meaning that it is instant, chronological messaging between users as it happens.

    By using what’s known as a ‘hashtag’, which will look like this ‘#CarersQA’, Twitter users will be able to send questions to Gemma and Cathy, who will respond using the same hashtag. 

    This groups all the messages together so they form a conversation between all people using the #CarersQA hashtag.

    We’re encouraging all our Twitter friends to get involved and come to the session with questions.

    Our helpline advisers are on hand daily to give callers information to help them make decisions about personal support needs and the needs of the person they’re looking after.

    This includes information about assessments, benefits, direct payments, individual budgets, time off and maintaining, leaving or going back to work or education, as well as information on how to complain if anything goes wrong with any of the services you use or put you in touch with local services.

    This is the first time we’ve tried this, to see if we can reach those of you who are perhaps stuck in front of a computer, online looking for information or advice, or perhaps who use your PC, laptop, mobile or even Ipad to connect with friends and family.

    Whether you are a Twitter user or not, you can still see the conversation happening by going to www.twitter.com/carersdirect. 

    Enter ‘#CarersQA’ into the search box at the top of the page, hit search, and all the tweets from people participating in the discussion will be displayed. 

    Don’t forget, if you need information, advice or support now, you can call our free and confidential helpline on 0808 802 0202. 

    You can also request a call back in one of more than 170 languages or email your inquiry instead.

     

     

  • No justice.

    by TheMother on 27 June 2011

    I'm furious!  Angry

    Two care assistants at a nursing home who deliberately covered up the fact that a patient had fallen out of bed when they were changing the sheets, breaking his hip, have been sentenced to community service.

    The patient was subsequently left for EIGHT DAYS without the  medical care he needed- he died twelve days later.

    The two care assistants were both given community service orders - one for 140 hours and one for 100 hours - now do the maths folks - 8  multiplied by 24 hours = 192 hours.  So each care worker has been sentenced to serve less hours than the patient was left without the  medical care - justice?  I think not! Angry

    Of course the other point that can not be overlooked is the question of whether a famiy member would have received such a ridiculously leneient sentence for the same offence.  In all honesty we all know the answer - no!  A carer who was a  family member in the same situation would have been given a custodial sentence.

    As carers, family members are often listed as potential abusers, harrassed if we do what is right for the person we care for when it goes against what some paper pusher has dictated in 'poicy', judged, deemed guilty until proven innocent when there are disagreements between us and 'the powers that be' over the needs of the people we care for and generally taken for granted by any old official who can't do his/her job properly.  But employed carers can do this to a patient and walk away with a community service order! AngryAngryAngry

     

  • Too young or too old?

    by Sam_S on 26 May 2011

    In the current climate of cuts and savings most services for young carers and adult carers are doing all they can to maintain their existing services and cling on for dear life. There's very little room to expand or develop new services or reach out to any more carers who might need support.

    In one sense this is where online services such as ours ( http://www.youngcarers.net and http://www.carers.org ) can really help to plug that gap and we're working hard at the moment to reach out to a group of carers who often fall through the gap between childrens and adult services, young adult carers.

    We all hear about young carers, especially through big events such as Comic Relief and Children in Need. We all understand that many children are helping to support parents and siblings who have disabilities, illnesses or mental health conditions and that these children and their families need extra support if these responsibilities are not to affect their life chances. But what happens when that 10yr old who gives mum her medication and helps her get dressed and washed each day finishes at college and wants to go to university? Who is going to take over these responsibilities allowing him to move out of home and get a job or go to university? How will he deal with the guilt and the worry about his mum if he's studying 100 miles away from home? If family finances are already stretched to the limit how can he move out, form a relationship and become independant in the way that his peers will?

    For many young carers reaching 18 this is also the point at which they are no longer able to attend young carers' services. And with the best will in the world, 18yr olds often don't feel they fit in with services aimed at adult carers where the average age is often 50+.

    We're really excited that through our online services we can seamlessly carry this group over to our community of adult carers as our small staff team of four works on both communities and actively promotes integration through facilitated chatroom sessions, online parties and the development of information aimed specifically at the 18-25 age range on our site. Young people whose lives are busy in so many ways can drop in and out of our online community at times and in ways that suit them, supported by our online team and can then benefit from all the expertise and experience that our adult carers bring with them. The most recent highlight for me was, last night in our chatroom, seeing a 68yr old carer explain to a 19yr old how to make dumplings and to see the support given to another 19yr old who was struggling to stay in college. Inter-generational work at it's best!

    Sam

    Online Support Manager

    The Princess Royal Trust for Carers

  • Shoe Envy!

    by TheMother on 07 May 2011

    Since her orthopedic surgery a few years back my daughter has been able to buy shoes from the shelf and kiss goodbye to orthopedic Pedro boots.

    So many of you will have your own experiences of getting orthopedic boots for your child - some will be good and some, unfortunately, will have been problematic.

    When my daughter was a child we didn't really have problems getting her boots as the guy who did the boots worked in the physio dept she attended - a sort of one stop shop.  I know this is  not the case for everybody.

    But I frequently had the most unbelievable hassle in the form of shoe envy!

    Ex-friend, previously mentioned in another post, has a nephew who also has cerebral palsy.  On one occasion her brother had popped in and whilst there had mentioned that they were having problems getting the orthopedic boots for his son - this was the start of MY hassle!

    Practically every time I saw her she would trot out the story and demand to know why SHE couldn't get FREE shoes for her kids - after all - her son had once ruined a brand new pair of shoes by wearing them whilst out on his bike - so she felt this entitled her to FREE shoes.   (She wouldn't consider the fact that at least her son was able to ride a bike!) Of course there was also the fact that her children all wore larger sized shoes than their peers - so surely this should entitle her to FREE shoes.

    Now at the time the Pedro boots for my daughter cost about £80  and 'proper' school shoes cost about £20 - so I did try to explain this difference in our situations.  (With the addition of the fact that the boots were supplied for medical reasons!)  But oh no!  She insisted that she paid £80 for her  pair of children's shoes - yeah right !  Honestly - there wasn't  a shoe shop in town that sold children's shoes at that price back then!!!!!!!!!

    To some, all this might not seem that bad - just b****y annoying that she went through the whole saga nearly every time I saw her. But it was more than annoying - it was really upsetting - and those of you who have been on the receiving end of this kind of thing will realise this.  You will know that you would rather your child were able to be out riding a bike in order to ruin new shoes, you will know that it is soul destroying to find yourself expected to explain and defend whatever tiny bit of help you manage to get, to people who have no idea about the life you have to lead and the hoops you have to jump through - sometimes to get the most basic rights such as health care.

    But what really takes the biscuit is that she would always demand to know 'when did this child stop being his responsibility?'.  She would rage about parents of disabled children expecting the state to pay for everything etc. etc!

    Looking around at her three healthy and active kids I have never been able to work out why anybody would be so jealous of disabled children being supplied with the orthopedic footwear they need.  Neither have I ever been able to work out why she thought it was acceptable to throw this saga at me so regularly and insist that we were getting some kind of unacceptable perk.  Funnily enough she stopped this little saga eventually - once she became disabled herself and was able to get a nice wet room, a fancy arm chair and a fancy bed - all for FREEWinkWinkWink   I suppose that you could say the boots on the other foot now!!! WinkWinkWink

     

     

     

  • In That State!

    by TheMother on 04 May 2011

    I was at a friend's house today - well an ex-friend now!

    Often you hear about how taking on a caring role results in the loss of friends - this can be for various reasons but today's little incident takes the biscuit.  (More on biscuits later!)

    Said ex-friend decided to start dictating her opinion that she should have the choice to end her life if she became seriously disabled.  This post is NOT about the euthanasia debate itself but about the c**p we, as carers, and the people we care for have to put up with from throughtless people and how thoughtless friends become ex-friends.

    So, said ex-friend continued with her usual ill-informed opinion about DNR notices and advance directives and her choice.

    Now here's the rub - SHE doesn't want to end up in a wheelchair.  SHE doesn't want to be the person who needs help with personal care and feeding and every aspect of her daily life.  Every sentence she uttered referrred to my daughter's life.  My daughter uses a wheelchair, my daughter is, like so many others, the person who needs help with personal care and feeding and every aspect of her daily life.

    Then she went a bit too far - she announced that she should have the choice to die if she was 'IN THAT STATE'.

    Believe me - you could have heard a pin drop in that kitchen and I waltzed into the lounge, picked up my daughter and left!

    Who the hell does she think she is to judge the quality of life of other people? 

    So let's gete back to the topic of biscuits.

    Said ex-friend has some back problems and type 2 diabetes.  These problems result from the fact that having spent her whole live eating junk food she is more than clinically obese.  Her disability is of her own making but she thinks she is entitled to judge the quality of life of other people who are far more disabled than her and have got lives worth living.  As the incident developed I glanced around the kitchen table - cake, packs of chemical ridden  biscuits from cheap shops etc.  (Actually the cake is probably crumbs  now as I picked it up and smashed it down on the table in exasperation!)

    To be honest she will never need any form of assisted suicide - if she carries on eating junk at the rate she does she will finish herself off sooner than she realises.  In the meantime she does not have the right to judge the quality of life of disabed people and she will NEVER have the right to refer to severely disabled people as 'IN THAT STATE'!

    I don't want friends who think in the way that she does - I don't want friends who think that a severly disabled (or less) life is not worth living and I don't want friends who think that it is acceptable to refer to the condition of my daughter as 'IN THAT STATE'.

    Question -  who has the better quality of life - my daughter or said ex- friend?

    Answer - my daughter.

     

     

     

  •  

    It’s been a while since I’ve blogged for the Carers Direct team, but I’m only too happy to do so now, as I’ve got something very exciting to write about!

    Last year we embarked on a mission to find a caring family. We wanted to try to show what life is really like for carers. We thought we could do this by giving a family a video camera and asking them to record their daily lives – their highs and lows, their struggles and triumphs. We knew this would only reflect one family's experience, but it would show a small sample of things carers do day-in and day-out.

    It was easier said than done, and we searched across the country for a family to undertake this task. We realised that we were asking a lot of a family already under pressure from their caring roles. We knew it would be a very special family that would agree to get involved.

    Thankfully, with the help of a local branch of the National Autistic Society, we met Marie and Alan and their two daughters, Jasmine and Paris (now aged 16 and 14). Jasmine has autism, scoliosis, dyslexia and dyspraxia.  As a family, they work together to make life as comfortable as possible for her. They’ve been through a lot of hard times in trying to get Jasmine the support she has needed, but they have also learnt a lot along the way, and as mum Marie says, they can see the light at the end of the tunnel.

    That’s why they decided to put their lives on film – they’ve been there, they’ve done that, and they have learnt valuable lessons that they wanted to share with others. They also thought it would be ‘therapeutic’ for them as a family, to talk about their feelings and experiences.

    They had the camera for about six weeks (with some additional filming support from us) and they were able to capture their thoughts on everyday life, from the things they do for and with Jasmine each day, to them all going out as a family, and the steps they take to make sure everyone has a good time.

    From this we’ve made seven episodes under the title ‘Caring for Jasmine’. Each film covers a different topic, such as diagnosis, relationships and going places. They are going to be released one by one on our NHS Choices YouTube channel leading up to World Autism Awareness Day, Saturday 2 April 2011. If you can’t wait to watch each episode, they’ll also be available at our Real stories hub.

    Jasmine herself asked not to be filmed, but she is as much as part of this series of films as the rest of her family. We had a great time working with a wonderful family, and hope everyone enjoys the films as much as we enjoyed making them.

    If you'd like to leave a comment, please feel free to do so below, or on the Carers community forum. We also have more than 7,000 friends on our Facebook page now - you can post your thoughts and comments there as well.

    Take care, 

    Patricia.

     

     

  • A friend and fellow-carer has put this book in my hands.  Wonderful.  Great reading for all carers (who of course are NOT selfish pigs, but may think they are).  The author, Hugh Marriott, is a carer of his wife who has Huntingdon's Disease.

    This winter, as usual, has been a struggle for me.  My beloved, the Great Survivor, keeps ticking along.  I began the year, Jan 1st, by driving to the emergency doctor's clinic to pick up anti-viral drugs for shingles, which had developed over Christmas.  After a few weeks it moved from my face into my eye, and caused more problems.  Fortunately not enough to stop me in my tracks.  Friends and neighbours helped with 'gourmet meals on wheels' mostly lovely homemade soup.

    However, I got the message and we have finally decided to bring in care for my beloved.  At present a carer comes every morning for 1/2 hour to wash and dress him.  We know we are very fortunate to be able to pay for this.  On the other hand, we go without the sort of activities which normally absorb disposable incomes: holidays, meals out, other kinds of treats.

    I thought this would simply help me in a physical way, spare my body some aches and pains associated with the caring tasks.  However, the main benefit has been psychological - someone to share the responsibility, to moan too when things have been difficult, to seek advice from (as the different carers who turn up have all a wealth of experience).   My family and friends too are greatly relieved as they feared they would be next in line for caring duties if I collapsed.  If I do collapse, we now have a framework on which to build in extra care!

    The great survivor enjoys the attentions of the different people who come to care for him.  I thought he would miss my personal attentions.  In fact he is glad he has a more cheerful wife back!

    Hazel

  • We've been a bit too quiet - sorry - been busy, been suffering at the hands of every winter virus that exists and been, as usual, rather p*****d off with all aspects of officialdom who seem itent on making our lives as miserable as possible - do you think they get a bonus for this? ! 

    So today there is even more reason to be p****d off with officialdom - the launch of the white paper on benefits that will see the majority of us carers screwed even more than we already are!  Don't believe the claims that nobody will be worse off - of course we will!  Oh they gaily state that nobody will receive less cash and if their new rate on universal credit is lower than their current rate then they will continue to be paid at the higher rate - except they won't really - because their higher rate will not increase in April each year until the new, lower rate, catches up with them!

    And what an apt day for my daughter's letter to arrive from the benefits people - setting out how her Incpacity Benefit will increase in April.  Now if you've had your letter you will already know that IB will increase from  £91.40 to £94.25 , an increase of £2.85.  Problem is that her age related addition is decreasing from £15 to £13.80.  So her real increase is only £1.65.

    Now before you all jump down my throat and tell me that you don't get an age related addition please remember that in reality neither does she!  When Tory Blur introduced this (what was then an extra tenner) he also introduced a reduction in housing and council tax benefit  - putting her into the non dependent deduction section of HB . So at the time she got an extra £10 but £9.70 was taken away through HB nd CT benefit reductions!  So, as the age related addition is being reduced - is the HB and CT deduction also being reduced so that she is expected to pay less - is it hell!

    But back to the white paper.  What will happen to carers in this new universal credit?  Well if you are lucky enough to be able to work and claim Carers Allowance you will keep your carers allowance.  If you are not able to work due to the nature and extent of your caring role you are being shoved onto the universal credit so that you can now OFFICIALLY be counted in the generalised group that joe public refers to as benefit scroungers.  The government is STEALING YOUR IDENTITY!  Being able to say that you are a carer and are getting CA as opposed to the dole was probably the last bit of integrity and indpendence that most of us had left - but that is about to be snatched away.

    A few years ago when all the idiots at the hospital were pretending to be concerned about us they kept asking if I was getting CA - in the future when they ask any kind of question that might necessitate me admitting to being on the new universal credit the answer will simply be ...'none of your F***ing business!'  And why?  Because we all know that telling them the truth would lead to them judging me in a way that would adversely effect the health care my daughter receives - I'll officially be a benefit scrounger rather than a carer and if we give them that information we will suffer as a result.

    So, even if the new system gives you a few bob more than somebody who is technically unemployed (and we will have to wait to find out the figures), the change will strip you of your identity, your integrity, your independence and your pride.

    I took a quick look at the Carers UK site and their statement admits that they support this change - working carers are to retain their identity as carers so why should the rest of us matter?  I don't now what PRTC thinks - and you know folks I don't actually care what any of these groups think.  What matters is that we, as carers, are about to be kicked in the teeth once again - and anyone who isn't part of the solution is clearly part of the problem.  Time to harrass your MP and get her/him to voice concern about the fact that carers are about to be officially demoted to benefit scroungers by a government that consistently lies about how much they value us and kicks us in the teeth / head when they think nobody else is looking!

  • One Month To Hearbreak

    by ned ludd, carer on 15 January 2011

    i said I wouldn't be blogging here any more, but I have to swallow my pride as this is more important than myself.

    The governments consultation on the DLA cuts ends on Valentines Day (14th feb for the non romantics among us).  The Broken Of britain are running a campaign aimed at carers and disabled people standing up against the cuts.  You can see their stories at http://onemonthbeforeheartbreak.blogspot.com/   You can see my blogs on it at http://nedluddcarer.blogspot.com/  

    These cuts will hurt me, my son and probably you as a carer - almost certainly the people you care for.  Tell your MP and local councillor, how you will be affected - losing Mobility Allowance, losing DLA, cuts in local services to respite care, disabled transport, eligibility criterea excluding people from services, higher charges for care or simply care service reductions and closures.

    We have to make our voice heard - no one else will speak up for us.

  • Welcome to 2011! What is this year going to have in store for you? Will you make this the year you think about returning to work? Perhaps you’ll investigate distance learning options? Or maybe you’ve become a carer for the first time and are wondering where to begin.

    At Carers Direct, we’re hoping carers will try to make it a priority this year to take some time out for themselves. We know that for many people this is much easier said than done, but one of our aims is to try to highlight the importance of carers getting a break and to point them in right direction of respite and support services. After all, if carers neglect their own health and wellbeing, chances are, they will fall ill themselves.

    You can make a start on finding local help and support through the Carers Direct directory. You can find the directory on the home page in the 'Services near you' box on the right-hand side. We’re updating it all the time so if you can’t find a specific service near you now, check back a bit later.

    Another important step in ensuring you’re getting the help you need is to have a carer’s assessment.  This is your chance to discuss with the social services department of your local authority what help you need with caring. You can discuss any help that would maintain your own health and balance caring with other aspects of your life, such as work and family.

    Also, with the start of the new year, thoughts often turn towards saving money – I know mine have.  We’ve got some budgeting tips on Carers Direct which might be worth checking out to help put you in good stead for the rest of the year. There’s practical advice on saving money, bills and banking, potential discounts and more. 

    And finally, after slightly reduced hours over Christmas and New Year, the Carers Direct helpline is back to normal operation. As always, you can call free from UK landlines between 8am to 9pm, Monday to Friday, and 11am to 4pm at weekends on 0808 802 0202. You can also request a free call back in one of more than 170 languages.

    Until next time, take care, 

    Patricia.

  • Surveys and Statistics.

    by TheMother on 16 December 2010

    I received yet another survey request about being a carer this week and as usual am left wondering about the intelligence of the people who compile these things.

    Same old re-hashed questions with the sole intention of getting the responses and results they want, as opposed to the truth!

    Many years ago somebody wrote a book entitled 'How to lie with statistics' - it swiftly went to the top of the reccomended books list for university students studying relevant subjects and it is still in print today.

    The trick with these surveys (when compiling them) is to word the questions so that people are drawn into giving you the answer you want - usually by omitting the options you don't want.

    When filling them in the best bit is if they give you  a box to explain why you ticked 'other' - when I ticked 'other' for the question that wanted to know how the proposed cuts would effect me as a carer I typed in the box 'can't miss what you've never had!' - which just about sums up the state of services for most carers before the cuts!

    I wonder which scientifically proven methodology they'll use to calculate the statistics for that answer!!!

     

  • Another fall

    by Hazel2 on 04 December 2010

    Just when I thought it was safe to relax - a crash from the next room alerts me to the fact that the Great Survivor is testing his survival skills once again.  He had fallen getting out of his recliner chair, probably because he had steadied himself by grabbing his little table on casters.  He had not fallen from a great height but had banged his head on the quarry tiled floor and was bleeding from a cut on his scalp.

    Having just had a morning mug of coffee, I was immediately shaking with the excess of fear and adrenalin.  In fact he seemed fine, had no pain anywhere and would have got up had I been strong enough to help him.  I rang our new (yet old friend) neighbours who were round in a trice to help him back into his chair.  (I know that not moving someone is recommended but as he had no pain in his legs or hips I felt it would be better to get him into the chair).  While this help was being administered I was on the phone to the doctor who said I must call an ambulance.  We were thoroughly snowed in or I might have tried to drive him to A and E or something. 

    In fact the NHS did us proud.  The paramedics were with us within twenty minutes and were very pleased with his overall condition.  They were just worried about his head bump, of course.  After deliberation, they organised a subsequent visit from an ECP (new to us), an emergency care provider - or paramedic with the skills to deal with minor injuries.  He came within the hour, confirmed that my beloved seemed fine and quickly dealt with the scalp injury, saving us a terrible long visit to A and E somewhere far from home.  What a sensible idea, to send out these guys to deal with such lesser problems and save the great cost, to NHS and patient, of a visit to a hospital.  The Great Survivor would probably have refused to go anyway.

    We were left with instructions to watch for any signs of concussion and since then all has been well.

    His blood pressure had been (as usual) rather low, so maybe this added to his unsteadiness.  So we shall probably phone the GP to review his meds, some of which lead to lowering of blood pressure.

    Since it happened we have had nothing but concern and support from our neighbours and family which itself confirms we made a good decision moving here.  Lots of suggestions have been made re whether we should carpet the hard floors, but he feels safer on a firm surface.  My solution would be to get hold of a michelin man suit with rubber helmet and ask the Great Survivor to wear it at all times.  (Maybe some thick clothes at least).

    Until next time,

    Hazel

     

     

     

     

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Carers' questions answered in the Carers Community

Advisors from the national Carers Direct helpline are constantly monitoring the Carers Community forum waiting to answer questions on legal, financial and other issues affecting carers. If you've got a problem and don't mind sharing it, they can offer some help.

The carers bloggers

Shelley121 looks after her husband who has bipolar disorder and Borderline Personality Disorder
Kendra27
is 27 and has been caring for her partner with mental health problems and gender identity disorder since 2006
The Mother feels that after 26 years as a carer, 'The Mother' is the only identity that she is really allowed
ned ludd, carer
has a grown-up son with learning and physical disabilities, who needs 24 hour care. He wants to change the culture of caring to focus less on bureaucracy and 'box-ticking'
Anthony1
has cared for his wife, who has Alzheimer's, for 13 years. He would like to hear from people in a similar situation
Wonderwoman1 cares for her husband, who has a back injury, and her 2 children who both have autistic spectrum disorder
Tony
aka User145767 is a full time carer for his daughter 'G' who has Downs Syndrome.

Scribbler John
 
cares for his Dad, who has had a stroke, and his Mum who has mobility problems
Hazel
  cares for her 90 year old husband who has Parkinson's disease and diabetes
Deborah Packenham
has a son with autism and is National Autistic Society (NAS) Branch Officer for Barnet
Sam S is a youth and community worker for The Princess Royal Trust for Carers
Kerry Page has 4 children between aged 20 and 10. Her youngest two boys are both severely disabled with Fragile X Syndrome and autism
Wendy1 is from Chill4usCarers

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The opinions expressed by the bloggers are their own not those of the NHS. If you have any concerns about your health or of those in your care you should contact your GP or use our medical advice now section.

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