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Hi I'm Belinda I'm your community manager at The Patients Voice.
If you would like to leave a comment please click on link at the bottom of the page.
You can reach me at belinda.shale@healthcarelandscape.com.
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Dear Carer
Welcome to The Patient Connection blog on the impact of the Carers Equal Opportunities Act 2004. A blog is an online space which gives you the opportunity to set down your opinions or just generally let of steam.
According to the excellent web site http://www.carersinformation.org.uk a carer can be defined as “someone who looks after a relative or friend, who, because of disability or the effects of old age cannot manage at home without help”.
Currently you save the British government £57 billion pa according to the site.
Because of your important role, both personally ands socially we have been asked to find a bit more about how Carers Equal Opportunities Act 2004 has changed the way you deal with Social Services Departments.
Under the provisions of the Act you now have to be informed of your right to an assessment:-
Thus we have a number of questions about this:-
Please feel free to contribute you thoughts and share your experiences. All you need to do is type a nickname of your choice and the put your comments into the box. Your comments are anonymous of course!
I look forward to reading your comments.
Best wishes
Belinda
Thanks for joining please feel free to add your comments and share your stories
freefred | 19/04/2007 15:52:00
to be perfectly honest, i must admit to not knowing tha act existed before today. We have finally had Social Services helping us in the past six months, but that was only because of an incident involving my daughter, and because I became ill as well, first with pneumonia and then with M.E.
TONY1512 | 19/04/2007 16:03:00
The principle is good, but due to a backlog of work in my area it has not fully materialised. By and large Carers are not seeing any significant improvement in their circumstances. The system requires more funding to ensure assessments are carried out as quickly as possible and these need to be linked into the assessment process for the person they care for. An accessible action plan then needs to be produced so the Carer is clear what is happening & when.
Barney123 | 19/04/2007 16:26:00
My wife who is 77 is in fact my Carer, as I'm disabled, following a fall in 1999, causing a rare disease called Transverse Myelitis, for which I receive a Disability Allowance. Because my wife gets an Old age Pension she only receives£4.30 a week based on the difference between her entitlement & amount of pensionin in caring for me. !!!!
Joe | 19/04/2007 16:33:00
this act does not apply here in Scotland where we have a different health system and care for the elderly is free if you can persuade your council that it is necessary. However it is stilla case of "if the governement can save money by getting you to do the job then they will"
rosemary lobo morell | 19/04/2007 17:03:00
I AM MY HUSBANDS CARER.HE HAS PARKINSONS DISEASE. I CONTACTED SOCIAL SERVICES MYSELF,EVERYTHING HAS GONE ACCORDING TO PLAN UNTIL I NEEDED TO GO INTO HOSPITAL FOR MY SECOND KNEE REPLACEMENT.I MANAGED TO GET CARERS TO COME IN TO GIVE MY HUSBAND HIS MEDICATION, THIS WASN'T VERY SUCESSFUL AS CARERS CANNOT TAKE MEDICATION OUT OF THE BOTTLE OR PACKET IT HAS TO BE PUT IN A DOSSETT BOX BY THE PHAMACIST.THE CARERS CANNOT ALWAYS GET TO THE CLIENT AT THE TIME THE PILLS ARE DUE.SO MY HUSBAND BECAME EXTREMELY AGITATED.I NEED TO GO INTO HOSPITAL FOR A HIP REPLACEMENT IN THE FUTURE,SO I AM HOPING TO GET HIM INTO A NURSING HOME FOR RESPITE,FUNDS ALLOWING
JJ | 19/04/2007 17:30:00
I live in Northern Ireland and to be honest have not heard from social services in the 15 years I have been caring for my father. I have been on holiday once in this time and it was a nightmare trying to get cover. My father ended up in hospital as a result. At the moment I am having trouble trying to get benifits for myself sorted. I find that all depts are like brick walls. It seems if you are prepared to care you are left to it.
ebony eyes | 19/04/2007 17:40:00
I am a carer in the community and I feel that a lot more could be done, half the time you cant get hold of any-one in an emergency although they give you a number to call you can never get any answer to the number given.It's such a shame as some of these people I look after have no-one only me to look forwrad to, and love it when I turn up on designated days even though only for fifteen to thirty mins once a week, and dont see any-one for the rest of the time.
Kay Sutton | 19/04/2007 18:59:00
I was carer to my son, who unfortunately died in May 2005. The time that I did look after Rob, could sometimes be very exhausting! He was an alcoholic, and on times needed looking after 24/7. Except when Rob went into re-hab, I had no respite. My husband and I were always afraid to leave him on his own, so it was holidays for 3 of us in the UK, and that was exhausting as well! It was while I was on holiday in Burnham on Sea, with Rob that he died. All the hours that I spent with him, I would do again if I could have him back with us!
Elizaeth Henderson | 19/04/2007 19:13:00
I HAVE BEEN A CARER FOR MY HUSBAND FOR 20YEARS HE IS BADLY PARALYSED AFTER A FEW STROKES AS HE CAN NOT DO MUCH FOR HIMSELF MY TIME IS NRVER MY OWN I CANNOT CLAIM CARERS ALLOWACE AS I TECEIVE OLD AGE PENSION I FEEL THIS IS UNFAIR AS I HAVE WORKED TO GET A PENSION ALL MY ADULT LIFE.
Jan W | 19/04/2007 22:28:00
I have been a carer for my husband for 8 years since he suffered a brain haemmorhage then had a stroke at the age of 43. Fortunately his disabilities are not as severe as some but still needs someone to be with him especially outdoors for his own safety. He also developed epilepsy about a year after his stroke. From the onset of his illness I have received very little help from any of the services unless I have discovered them myself. My saviour is our GP who is great and has helped with the NIGHTMARE forms from DWP.and pointed me in the right direction. Not heard of the new act. What really annoys me are the bad back brigade who seem to get everything given to them on a plate, although most of them have never done a days work , while genuine hard working people have to fight for everything. Currently going through same problems trying to get help for my mother , 80, who has terminal cancer.
john giles | 20/04/2007 09:00:00
I care for my wife who has Parkinsons . She is able to do many things but her head and hands shake which causes problems. She now has started Botox injections which can only be given at a London hospital which is hard to travel to where we live. The nearest rail station is 15 miles away . I go with her but I am 78 and she is 65 so it is an exhausting day out but so far we have had the use of a hospital car door to door. We hope soon that these injections will be able to be given nearer to home.
GFS | 20/04/2007 09:04:00
There are that many Acts, that it is impossible for people to be aware of them, as I was not aware of this one. Nevertheless, Act's are a little like Insurance Policies, so written that their is a get out clause should anything go wrong. Carer's are a vital part of life to a disabled person, who may or may not be at retirement age, but the retired definitely receive a lot more than a care, financially that is, and the governments of the day do nothing about it because it's saving them a fortune - so why should they!
Marie Purton | 20/04/2007 09:24:00
I am a carer for my father in law who is 97 in September. He really is lovely. His brain is active, but he can't walk very far and has a walking frame and when we take him out he has a wheelchair. He doesn't need constant care as such, but when we are invited anywhere we have to make sure that he has someone here to look after him. A friend comes to stay if we are away over night. He is connected to a care alarm so if he does have a fall he can press the button and some one will be there for him.. I love him to bits,but I really wish that sometimes my husbands brother who lives in Lincoln with his wife would ring and offer to have him for a couple of weeks. it would be a break for us and also a welcome break for my father in law - different surroundings. Unfortunately since my father in law who came to live with us in 1999, his other some has left everything to us and doesn't even ring him. I believe the last time he saw his father was almost 3 years ago. I wish my own parents were still here, I'd visit them and ring them all the time. Its very sad becuase when eventually my father in law is no longer with us - its only my husband and I that will miss him not his other son.
Pat | 20/04/2007 09:29:00
I care for my daughter who has terrible depression and agarophobia. the services in Scotland are very stretched and social care is at a minimum. I am retired with a heart problem, but I still have to take my daughtter whenever she goes out. I have joined the local princess Royal Carers Trust centre and have been invited to become one of their directors and help running the place. At one point while caring for my daughter and going through a divorce at the same time, I felt like running away. I eventually went to the Socil services locally and asked for help in getting me away for respitefrom the situation and was told that they only provide this service for women with young children. I felt totally let down by the system, but, to their credit, they referred me to the carers centre and got as much help from them as I could. They have been wonderful during my time there and I hope to continue with my association with them. If anyone has a centre in their local area, make use of it as they can help a great deal as I have said
Gael Bage | 20/04/2007 10:35:00
I have the same lack of family support,both brothers live abroad visits and phonecalls are rare and brief. I care for my 89 yr old mother, I am 67. I don't get carers allowance either because I get a small nurses pension. I always have to ask to get any help from social services and the first time my mother went into respite it was a total disaster.She was in for a week, during which time she gained a bedsore because she laid in bed most of the time, the wound was inflamed because they didn't dress the wound. When I collected her all incontinence pads were still in the packet, her bed ws soiled with faeces urine and serous fluid from the bedsore. They had dressed her, on the way home I found they had neglected to put knickers or incontinence pad on her. She is diabetic and I found two sweet buiscuits in her handbag. I chose to move here because they had a good day centre, cuts in services and the day centre was axed, mums mental state has since deteriorated. I would like to see some beds allocated to give respite if a carer is ill. It can be really hard to continue caring when one is quite ill oneself. A laundry service would be a boon too, my mother is doubly incontinent and quite capable of removing her pads at night.
cath | 20/04/2007 10:56:00
both my husband and i have been registered disabled for three years and i have just had aphone call to say oc therepy will come and see me next week to asses my needs as i have poor mobility and cant use my hands very well but i have had a shower and new kitchen put in when i got my small pention pay out even though we live in a council house i felt too scared to wait so i am waiting to see what they can do for me
John | 20/04/2007 11:04:00
I was caring for my wife prior to her being diagnosed with a brain tumour last August and subsequent operation. She has been in hospital for 8 months. So far case conferences have been somewhat hit and miss with key players forgetting or not attending meetings. So far the social worker involved has been helpful but I do worry about the future and level of services available for a carer. I was not aware of the Act but am going to get it off the website.
Kerry | 20/04/2007 11:15:00
i am a suport worker in the community for the mentally ill and this act helps us maintain the brilliant care that is given and keep them in their own homes for as long as possible,even if you are a carer for your own family its easy to make choices for them because its easier but its not always what they want tney just put up with it because they dont want to be any more of a burden! dont be ashamed to get some help or have a break lots of volunteers will sit with your family so you can pop to shops or just get some YOU time.respite care is fantastic if you need a holidy go and check out places before you send them social services will help you find one just keep ringing them until they sort it,dont feel guilty who will look after you when you are worn out ..hope this helps some of you non paid carers that are took for granted x
Annie | 20/04/2007 11:19:00
Hi, I care for my son, who is 19 & has aspergers syndrome. Although I love him very much he sometimes displays very challenging behaviors. I had no idea I could get help from anyone. The only time social services have been involved with us is when the police or the hospital have asked them. Quite frankly I feel that they only involved to take him away, not to help us.
Serenity | 20/04/2007 11:28:00
The Carers Act is a sham to cover for slavery sanctioned by the UK Government. They insist on our providing 37.5 hours care tothe cared for which is the equivalent to a full time JOB. We often care for the family member 24/7 and they give us a pittence called carers allowance to offset the cost of caring. This money is then taken off of the Income support that a majority of carers are on and roughly half given back as a premium for caring to be a slave to the ruling government. The Carers Allowance is nothing more than state sanctioned fraud as it is money given for a specific perpose which is used by every carer as money to actually survive. They use Carers to make them look statistically good as we are classed as not employed but we are not unemployed because we do not have to sign on. We get no subsidies for caring we have to pay full price on public transport. We get precious little of substance by so called professionals as they seem to think they know better than the carers who live the life. Recently I sat in with my mum who has MS when she was having an addendum to her CCA and was encouraged to chat to the OT when the report came back for signing off she had not asked if I wanted a Carers Assessment, she had not taken any of my views into account and she had not even acknowledged that I had in fact been present. I rewrote the CCA BEFORE sending it back to the department with a very pithy dismissal of the hassles the OT had put me through. My father has altzhiemers and currently we are on a stage 2 complaint against the LA due to a discriminatory Fairer Charging Policy - If you are Learning disabled you get homecare free if you are elderly or infirm then you have to pay through the nose. They claim that it is not cov ered by discrimination law due to the legislation on fairer charging superceding the discrimination However there is an arguement t hat it is maladministration as one citizen is not being treated the same as another and therefore the rules on equity are not being obeyed. Therefore as I say the Act is a joke - a paper exercise to try to con carers that politicians care about us - they don't. They DO NOT CARE ABOUT CARERS they do not fund CARERS, they appreciate the fact that the Carers will not down tools out of love for their family member which is why this form of slavery will never be escaped from. Ministers sit in their ivory towers far enough away from reality so that they are insulated. Periodically we the carers will be pushed up te political agenda as a sop to try to keep us from saying what we really do feel. As a Carer for family members with Mental illness, Learning disability and also physical disability I am very well known within our SS dept when I cried help asking for a social worker my cry was placed at the bottom of the case load - when questioned about it - the response was oh well we know you are one of our strongest carers - we thought you would work your way through it. My Brother at the time was quite literally insane due to the wrong med s being given. The fact I had shouted for help should have had a lot more alarm bells going. We got help - my brother got help and finally I broke down and laid a stage 3 against health for misdiagnosis and my brother was dignosed as autistic 30 years after he should have been. His medications are now minimal and he has one to one supports and has a life through direct payments. I had to go off and get the training myself as the LA was not able or willing to be part of the Partners in Policy making at that time. Things are now thankfully changing for my brother but its not down to the Act it is purely down to a family that is willing to push the professionals and fight for what is right. Sorry for the tirade but I feel it needs saying
nick | 20/04/2007 11:50:00
Hi Belinda, Thanks for your message on my blog and congratulations on this one. Sorry I can't leave a message about my experience as a Carer because I'm not one, however I care about Carers hence my being a Crossroads Trustee for our county scheme. For those of us fortunate enough to presently enjoy good health, the important fact to drive home is appreciating exactly that. we are all just a heartbeat away from being a Carer or a Cared For. Comments such as those from Barney123 sadden me greatly. I often wonder if all Carers said 'bugger it' for a day and downed tools, Authorities would be unable to cope with the workload. They rely on that solitary word 'love' though, knowing full well Carers and Caring is based entirely on it. In return society must support our Carers in a manner befitting their role and not as is so often the case, take them for granted!
Robbo | 20/04/2007 12:03:00
I have never heard of this Act or had it drawn to my attention though I am not a sole carer. I help to care for my elderly father in Northern Ireland visiting him regularly on extended visits from my home in England. Social Services were very helpful in putting together a package of care which met his needs. During my visits I relieve the SS carer who is fantastic.
deb | 20/04/2007 12:04:00
hi i care for my father who has had a stroke,leaving him with very little speech ,he also has very limited mobility.i also care for my mum she has poor mobility and is also exhausted looking after my dad.i recieve ca,but my real gripe is i have given up work to care for them so why do i not get at least mnimum wage for the hours i spend looking after them which often far exceed 37.5 hours a week.
cared out | 20/04/2007 12:10:00
I am a carer for both my daughter, she has ceribal palsey (mild) and epilepsy and my son who has been diagnosed with ADHD and mild autism. Although I get carers allowance and both the children get Disability Living Allowance, we (being 4 kids and myself) have not been on holiday in 5 years, It is too much like hard work. As another perseon said in her blog if you are prepared to care - then get on with it - seem to be the governments help, with no rest for the carers. I am happy to care for my own children and the money is a big help as my son gets violent at times and many things get broken, and need to be replaced. I have never heard of the law that is being mentioned here if I was told about it, it meant nothing to me
Llew Evans | 20/04/2007 12:28:00
I totally agree with serenity. I care for a parent who has bi-polar. I am one of five siblings the other four all have reasons why they cannot become involved in the much needed care. I live next door to my parent and was up untill 3-30am this morning as there was a health problem. I work with people with learning dissabilities and still have to go to work each day. We have carers attending two hours each day and I say big deal!!! Due to the inceasing care that is needed I will finish my job in three weeks time. So I am doubley saving the government. The reasonable wage that I have been earning will not now be paid and the full time care that is needed will be provided free of charge. It sounds awfull when it comes down to cash but I am finishing a job where I work 30 hours a week and paid for doing so to now working 100+hrs a week for nothing. I dont even get carers allowance as due to the mental health problems my parent receives the higher rate of DLA. This so called act is an absolute joke. The billions that we save our government is given away to other countries to keep them sweet. There should be a set amount for full time carers which may encourage other people to take responsibility for their families and in turn help the economy. I have been doing this for 21 years. how much alone have I saved our health service.
WENDY | 20/04/2007 12:40:00
As the mother of a 37 yr old semi autistic son I have had no comunication whatsoever from the social services, I am compleatly on my own, apart from the benefits he gets thats it nothing they really dont give a damn, and neither do this goverment, they keep closing places down where people who need help can go and calling them care in the comunity, It should really be we DONT care for the comunity.
Clivegsd (UK Carers founder) | 20/04/2007 13:12:00
I am a full time Carer for my wife, I have become disabled myself BECAUSE OF MY CARING ROLE. The 'Act' is another pointless exercise like the New Deal for Carers (you have a right to an assessment but the social services aren't obliged to supply anything you need, my assessment said I should have an hours break each week!) and ignores what most Carers want, that is to be 'paid' for the job the do and not emotionally blackmailed and exploited by whatever mercenary group of political idiots are in power at the time. This is situation is compounded by the inability of Carers UK to challenge the government over ANYTHING related to Carers, instead of going to a charity that pays their employees a really good wage and has no idea of what Carers go through try looking beyond them to a site that is willing to talk to anyone to show the dirty side of Caring www.ukcarers.org.uk, pointless exercises like this won't help Carers, the only thing that will change things is to get non Carer UK members in front of Ministers, unless that happens Carers are going to have to put up with being exploited, which in a way is what this blog is doing
Gavin | 20/04/2007 13:14:00
Hi If you have never heard about the Act or a carer's right to an assessment you get the information here. http://www.carersuk.org/Information/Helpwithcaring/Carersassessmentguide Carers UK is an organisation of carers who provides information and campaigns to improve carers' lives.
sarah melaney | 20/04/2007 13:47:00
I am a carer of my partner who is 40 years old but I am not recognized financially for being his carer until the situation is that if I worked someone else would have to take care of him so then the government department then say I am unable to work as he needs a full time carer. He has multiple health problems including heart disease, diabetes, fibromyalgia and arthritis of the hips and knees. I get told that I am entitled to benefit as his carer and despite seven hospital consultants telling DSS that he has these health issues they give me low rate care component of DLA even despite him having a mobility problem even the DSS medical branch telling them to pay out the higher rates so the Act doesn't apply to me as it suits the government to use and abuse family members to release them from their responsibilities.
Serenity | 20/04/2007 13:54:00
LLew Go back to DWP hunni you are entitled to CA (Carers Allowance) when your job stops as it is not dependant on the rates the cared for gets its dependant on you providing substantial care to the tune of 37.5 hours in a week and them being in receipt of a disability benefit. Carers Allowance is paid to the Carer NOT the Cared for. You were most likely ineligible while you were working if your take home pay was over around £80 per week which is another rubbish part of it - the establishment want to get Carer's back into paid employment to cut the disability budget. They live in a dream world compared to the nightmare that several carers live in. Direct quote from my mom regarding my father shortly before he was taken into perm care. "I lay there in bed beside him listening to hear if he has stopped breathing - I suppose I am waiting for him to DIE." this was said in the presence of 2 OTs who realised because mom was in tears which thoroughly upset me as well we were not coping - WHERE WAS THE CARER SUPPORT - answer bung them in homes.
Lezah | 20/04/2007 14:27:00
I think I have been to busy caring for my husband who is severley disabled due to strokes because I did not know that there were equal opportunities for carers. In fact just what is there for carers in the help department. The government do not give a toss about the disabled or their carers.
Derdru | 20/04/2007 14:37:00
I am one of 5 siblings caring for our mum who had a severe stroke over a year ago...she is unable to do anything for herself..she has retained her speech but can be very confused... to the best of my knowledge none of us get carers allowance..my mum goes into hospital every 4 weeks for 2 weeks respite... We would not be able to cope otherwise as we all have other family commitments...we are carers to other family members as well...personally..I am carer for my husband who suffers from heart disease .. also back problems following a bad accident 12 years ago... My husband is also a carer for me...I suffer from fibromyalgia..chronic asthma and osteo arthritis...We both get the low amount of DLA for personal care..my husband also gets the mobility allowance which enabled him to have a car...otherwise he would not be able to get around.. Getting back to my mum...I know that her money does not cover all the care she needs..we have to pay personally for sitters to be with her 5 nights a week..my 2 brothers do the weekend nights...one night each...
Judith Lisgarten | 20/04/2007 17:11:00
I contacted Social Services, for my husband who has had two major head injuries, is epileptic, and has had a personality change. The part of his brain that is intelligence has not been damaged, so we are not eligible for any help, as everyone says he is too clever. This leaves me with no support at all. I am not perceived as a carer, even though my life has been turned upside down, and I have to be sorting everything out 24/7
Lynne Jolley | 20/04/2007 18:08:00
I have not bothered to contact Soical Sevices for anything, because people have told me where we live it takes years, i look after my husband who has back problems after being run over by a bus some years ago, he could do with a shower putting in as he finds it hard to get in and out of the bath, I cant afford to have one put in and i dont see the point of asking the S,S. for one as people i know have waited years for one and some have died waiting, so i just wash him instead as i can do without the extra stress!
Dottie | 20/04/2007 19:09:00
In our society we are all equal. Some are more equal than others, then there are the diasabled and then there are carers. Carers are these marvellous people who do fantastic jobs, under the most difficult circumstances, largely hindered by the government departments that are supposed to be there to help. the governement keeps saying how much money we save them every year. You can tell how much they actually value us by the pittance we are expected to live on. Who cares for carers?
Valerie Egan | 20/04/2007 21:01:00
I did not know this act existed before now despite being a carer. Our local carer's centres in Birmingham and Chelmsley Wood have never mentioned about this either to us. Are these people who are providing the service to carers aware of it?
Daisy | 20/04/2007 21:46:00
We don't have this act in Scotland,but I have had a carers assessment. It was done 9 yrs ago by the then care manager. The Princess Royal Trust for Carers Moray Carers Project which is our local advice & information centre has on the registration form the question "Have you had a Carers assessment & if the answer is no would you like one." If you are interested in seeing what our Carers Project does please take a look at the website www.moraycarers.co.uk I have to admit that although it ticks another box for the local authority, they may not be in a position financially to provide it. By the same token ,if they are not aware of everyones situation then they are not going to be able to find funds in the future to support you .
Sue Norman | 20/04/2007 22:45:00
I don't get any help as a carer. At one time I was caring for my mother and my grandmother along with my husband. Can you imagine one woman struggling with 2 wheelchairs at a time (I could never take out without the other) plus a man with a stick. It would have been very helpful if somebody could have come with us sometimes - I would push my grandmother a few yards, go back and push my mother to join her then return for my husband who cannot go anywhere without me by his side. This would go on until we reached our destination, it could take an hour to get from the car park to the cafe for a coffee sometimes! We laughed about it then and looking back it still makes me smile. My mother and grandmother have passed on now and my husband can hardly leave the house at all. I need to go out to work to support us as he only gets the lower rate of DLA. Once I have dressed him I leave him with everything he needs but at times the lonliness and depression coupled with his acute pain makes him very ill and he is prone to suicide attempts. If I could afford to I would give up work to care for him properly but the allowance is not sufficient. He has just spent a week in hospital again, the second in 4 months of this year, all because he is alone and unable to do anything as he can barely move. This must be costly for the authorities, if I were home all the time his hospital stays would be reduced if not eliminated.
Terri 20/4/07 | 20/04/2007 23:16:00
I was a carer for my late mother and am carer for my husband who has early Alzheimer's and other problems - with regard to my mother social service did nothing for her or for me, they would not even install a stair lift for her. with my husband I have had to fight every step of the way to get him DLA even though his doctor said he should have it. He has now been referred to the care management team of his consultant - just as well because they might be able to organise the equipment to help him bath as the team who were supposed to be dealing with it are useless - they never even came to visit him. There is very little help in most cases for carers and certainly no where near enough financial help for them. Those how are disabled are expected to live on less than alcoholics get to buy drink and that is self inflicted. Perhaps the government should try to do the carers jobs for one week - they could not cope.
Pysie | 20/04/2007 23:17:00
I was forced to give up work and sell my house five years ago in order to move in with Mum and become her full-time carer. I claim Carers Allowance and, having lived off my savings for five years (my pension!), I can now at last claim Income Support. I am registered as Mum's carer at our local surgery and have the support of district nurses and OTs, but I have NEVER had any contact from Social Services. No-one has ever offered either of us an assessment.
lynn | 20/04/2007 23:56:00
I have been a carer for my son who has many conditions that affect his life overall. I think the worst condition for my son is his mental health. to be hinest there is a distinct lack of provision and support in devon. I decided to make myself more informed. I am studying for a degree, am aware of many legislations in place, but to be honest most are a waste of the paper they were written on. as a carer i think people need support, and unfortunately 9 times out of 10 it is not available. my son is pretty much in limbo, no particular department knows what help to give him. and the final straw!!!! a disabilities officer at the benfits agency telling me she cant help my son. personally if they cant help my son find supported work then i'm not sure who can. Care in the community in my area means, your mum, wife, husband or partner or other family member will look after you, without support, because no-one else knows how to handle you, because you have complex health needs. thanx i feel better now for airing my views. am hoping to set up a support groupwith my friend, no-one should need to feel as though their on their. own
Clivegsd (UK Carers founder) | 20/04/2007 23:56:00
Message to Gavin from Carers UK. Why have you not responded to my open letter regarding allowing real Carers to take part in the DCS's Carers forum? Does Carers UK see Carers as mentally unable to speak for themselves? Carers UK is not actually an organisation of Carers, that's a fallacy, it is actually staffed by well paid employees, check it out at the Charity Commissions web site. The act is mere words to placate Carers and isn't worth the paper it's written on (though Carers UK will "warmly welcome the new act" wont they Gav?)
Dottie | 21/04/2007 08:29:00
Carers assessments (and carees, for that matter) are alll very well, but once you've had it, you only get something if there is anything left in the pot. The fact that you have been told you need this means nothing at alll. When your caree is diagnosed YOU should recieve a carers pack, which would tell you what you are entitled to and where to go for it. Nobody tells you anything, you have to go out and find it, at a time when you are all most vulnerable. Charities, nhs, ss etc. don't know about you until you tell them, you don't know until someone tells you. That is the reason why there are so many hidden carers. Who takes in things that don't concern them? You walk through life until the unthinkable happens and there you are, in a boat, in a storm without a paddle. I notice Clive here. He issued a challenge to all MP's (and a lot of other peolpe) to see if they could live one week on Carers Allowance. No-one took up the challenge. I wonder why?
LM | 21/04/2007 11:41:00
I think services in Northern Ireland seems to be the problem JJ, it was the same for me when i cared for my mother. Thank God I had family support but as far as getting other kinds of help, that was an impossibility. It seems if you are willing to get on with it yourself, then that is exactly what happens!
jim grant | 21/04/2007 19:50:00
we have had good and bad experiences with the social services. we have a disabled daughter who is looking at moving into a home of her own with support from social work. two years ago we started the assessment process and following the case being closed as the care manager moved and closed it without letting us know and then being passed to several different care managers we now have a manager who is keeping us up to date twice weekly and visits on a regular basis to check on any changes. we had to fight and phone almost daily before we got what we now have so if you have problems don't be afraid to make a pest of yourself as it is your rights you are fighting for!!
myk69 | 21/04/2007 21:02:00
Hi all and thanks Belinda for giving us the oppertunity to share our experiences. I am my wife's carer, she was diagnosed with Arterio Venus Malformation in 1999 which led to her having siezures. At the time we felt very isolated both by the social services and the medical proffesion. Luckily at the time we were renting a house from a friend otherwise we would have ended up homeless as when trying to reclassify ourselves with social services all benifits we were on at the time were frozen, this was blamed on a clerical error, but to this day we have not had anyone take responsibility for this or have we had this sorted out; we still owe our friend over £3000.00!! Although now we seem to have found equilibrium I feel that the system does not allow for change, is not flexible enough to deal with changing circumstances and I feel cause added stress to a situation already stressful enough! I have read a lot I agree with and one person mention just not bothing so as not to upset the balance. I totally empathise with you as we had three(3) years of struggling to finally get some of what we were entitled to! I read someone giving good advice and that is to be tenacious, don't let the government get away with treating you like a slave or low paid worker, if your anything like me you've pretty much had to do a doctorate and degree in social law just to keep up! On the up side, we now have a great GP and Neurologist, an understanding and helpful landlord AND we have come to terms with this illness and the limits it has set on our lives. I would say to anyone to persevere and if you can't do it alone make damn sure you have a few fine people on your side!
Neelie | 22/04/2007 16:46:00
I’ve never heard of this act. I’m a former carer now as my husband died suddenly recently. He was at home and got every help possible but it was all in vain. He had several conditions but the most difficult aspect was it taking years and years to get a diagnosis of the bi-polar disorder. The first time I tried to get help I was met with: ‘if you’ve got problems, you sort them out – we’re here for broken legs and so on’. There was no help for me (issues about confidentiality?) but later some didn’t hesitate to break confidentiality when it suited them and they wanted help with him! It was a very hard time for both of us but he is at peace now and I must build a new life without him. There was no contact with social services.
sanagus | 23/04/2007 16:48:00
My wife and I care for my son who suffered irreparablr brain damage when he was 13months old whislt I we were in Gibraltar, he has severe learning dfficulties is autistic and now aged 34years, his initial assessments were of little use and eventually I was forced to move to manchester to be referred to a leading paedeatric consultant, he attends an Adult Centre daily and we are attempting to resettle him in a flat of his own. My main gripe is regarding the enormous extra financial burden wich has been placed on us, To make matters worse he was suddenly struck down with Myocarditis a year ago and almost died, my wife spent eight weeks sleeping next to him whislt he was in hospital and I used to come home each evening (I am a shift worker) and spend all night next to him so that my wife could sleep, I then used to go to work the followin day, the Social Services wer useless, no help was given in order to relieve us and it left me having little confidence if they had had to cope if me or my wife were not around, We were initially in receipt of Caring allowance but this abruptly ceased when my wife became of pensionable age
Viv | 24/04/2007 09:03:00
I am the main carer for my husband who is 61 and suffers from severe Alzheimer’s. He has had it coming on for about 8 years and was officially diagnosed 5 years ago. Our GP and Surgery are brilliant with lots of moral support and advice. At the beginning the Council were quite good and did an initial assessment on us both but at that stage we were coping quite well on our own and my husband didn’t want to go to the Day Care Centre as he was very aware of things and others less fortunate distressed him. In May 2006 he did need and was given a place at a special Day Care Centre which cost the Council £70.00 a day. In August the medics advised another day for us both and again it was given but very reluctantly and I had to get both doctors involved in the issue. In November a 3rd day was recommended but the Council said NO and I arranged private funding for it as we both needed the time. In March 2007 all Social Service funding for Respite Care was withdraw as of 31st. March and we were left with nothing!!!! Absolutely NOTHING. I argued with them and asked for reassessments as we had not been assessed for almost two years. They said they had a backlog and funding was very tight. It took me over 3 weeks to get a District Nurse to call to assess my husband for incontinence pads!!! My husband solved the problem himself on the 25th March. He went out for a walk with out my consent, tripped and fell and was admitted to hospital. The staff have been brilliant. His medication has been changed under supervision. Previously we were given new tablets and left to try and work it out for ourselves. Not a good idea. My husband was aggressive and I had to call 999 twice to help with various problems. All a drain on Tax Payers money. The staff were amazed that I had been able to cope almost on my own for so long. They advised me not to take him out of hospital until a proper Care Package was put in place. The Council have reinstated his TWO DAYS but not offered the third. My husband is now doubly incontinent, makes no eye contact, can’t answer questions, speaks very little and you cannot prompt him to do certain things. It is like looking after a very big baby all on your own. The Council have assessed him at long last and are coming to reassess me on Wednesday. What help they will offer remains to be seen. We have a house of our own and some savings so you can guess who will be paying can’t you? We have both worked and paid our dues. We have brought up three children without asking for help or support and now this. I wonder if Tony and Cherrie or Gordon and Sarah would like a new job? They are pretty S**t at the ones they are doing now.
lm | 24/04/2007 13:16:00
I care for my husband who has mental health problems following a frontal lobe head injury in a car crash & mobility problems following an assault 4 years ago. When we moved house I chased up social services who had said we could be assessed, as the house was empty following the death of the previous tenant it seemed appropriate to have the alterations done at the same time as the ongoing kitchen and bathroom update but we had a delay of almost a year until he was assessed and work began which was hugely disruptive for my husband who finds change to his daily routine almost impossible to cope with. I had a carers assessment 3 years ago as part of a new initiative within my husbands mental health team but have never recieved any follow up or support since, as long as I do not shout they assume I am coping. The only respite I have had is when my husband was admitted to apsychiatric hospital for a period following a suicide attempt when he tried to hang himself. This still involved travelling to and from the hospital each day. I love my husband dearly but it has been an uphill struggle to cope and for our two teenage children - all of this on top of trying to get by on the meagre carers allowance and other benefits to which we are entitled.
John | 24/04/2007 14:07:00
I have been a carer for a number of years now as my wife is disabled with MS. She is wheelchair bound and needs 24/7 care. The problem I have with the present law in Scotland relates to the so called free service. This only applies to people who have no savings or capital under £16,000 on a sliding scale. I was made redundant over a year ago and after my insurance protection expired on my house, I had to sell it to get a rented property specially adapted for my wifes needs. However, this meant I had some spare capital which was immediately noted by Income support and the Social Services. I was therfore, stopped all payments from Income support and the Social Services want to charge me for the carers who help once a day in the morning. I believe I have worked all my life paying Taxes and NI stamps, yet as soon as I have some cash, the Government want to take it away from me. If I was not prepared to look after my wife, it would cost the Governmernt a great deal more than the limited help of care I get. I am 60 years old and now having to re-invest in a small business to try and get an income even though I have been diagnosed with Heart failure and Angina. It makes me wonder why I bother working or trying to save when as soon as you think you are comfortable, the Government find ways to take it from you. Am I alone in thinking this? I feel I am really being taken advantage of.
Les | 24/04/2007 14:27:00
I have looked after my wife for the past six years since she had a total emotional breakdown. She is now hearing voices and is on medication that sometimes makes her very confused. I am classed as a carer but admit that I have never heard of the Carers Equal Opportunities Act 2004. I can't, therefore, say how (or if) the Act has had an impact on our lives. I know only that, were it not for the dedication and support of friends and family I would feel very much alone.
michael polglase | 24/04/2007 14:31:00
i would like to see at least one person in each hospital who speaks at least on european language,when my father inlaw was in hospital,there was not one person in the hospital who spoke german!yet you will always find an english speaker in any hospital in the world!!!!
Paul W | 24/04/2007 15:25:00
My wife started to develope dementia some 15 years ago soon after my son killed himself I am certain that th mental shock contributed to this if it was not the trigger. Maybe I should say tyhat I have never heard of Carerers Equal Opertunities Act 2004 or any other year! I should explain that I have serious medical problems, no pituitary gland ( radically removed), pacemaker, type 2 Diabetis Artifical hip, 40% bi-aural deaf and arthritis in both knees. I am 75 in May. I take 21 tablets a day, groth hormone injected at night and Testosterone gell on my shoulders every morning, this has been going on for 15 years. My wife is 79 in August. and overthese seveal years has accused me of stealing her things, rings rearings money, pension whatever. after delaying for a year four years ago I took away her houskeeping money as she was irrational in saving it and not buying the goods and necessities to maintan the standard of hygine, cleaning or diet. Her GP was of little or no help, he and her specialist were of no help in setting up enduring power of Attorney as a result after several confrontations at last she was placed under Court of Protection after a confrontation with her specialist, I argued that if Power of Attorney was impossible the de facto must C of P be appled for. I ended up bursting into tears and hanging up on hime - the form was with my solicitor the following day. A sequal to this was that a week later her GP submitted the C of P for with a bill for £90.00, he was politly told what to do with it. Once the court had made the decision to appoint me to look after her affairs, the documents from the court were passed to Abbey our bankers. In spite of exact written instuctions as to how the court insisted that the receivers account be set up ie Mrxx acting as receiver for Mrs XX they failed to do it, phone calls letters, banking onbudsman brought in and still no joy I moved all our affairs to HSBC and within fifteen days all was sorted. DO NOT USE ABBEY BANK for any Court ofProtection work they just do not know what they are doing, a cheque for £50.0 in the end was no compensation for the effort I had to put in to try to sort things out, and of course there was a backlog of work to repay myself for funding everything until it was sorted. Only when I made an attemt at suicide was anything really starting to become organised the inital one morning a week respite in the day hospital became impossible she refued to go 'I am not that bad yet' and transport then had to be arranged to take her, she would not go with me. Then a day at the Alztheimer's Club was arranged which I had to fund, by now I was totally running the house, from about 3.5 years ago, now I had no life of my own the many activities all had to be stopped and I began caring fully 7/24 the family were of little help they were not able to cope with her. I never had a carers assessment in all this time. Now things were a bit better a whole day respite a week and a week respite a month in a local care home fully funded as by now only £10,000 was in her account. On January 2nd my wife went for a weeks respite, I was informed that a bed was available and if I and the family agreed she would have a permenent place, would easily fit in as she had beed going there for respitefor over 18 months. This resuled in more paperwork has her attendance allowance would stop and other changes had to be made. I had meanwhile gone to a meeting and had been informed that she should not be there wher she was as it was a home for geriatrics! A meeting was setup where she was involving the senior staff Her Care Manager and her nurse, members of the family attended to support me on March 2nd. They would not make a decision in spite of my concern that having had her for respite for 2 years thaey required another month to decide if she could be permenant 30th March. Cant cope with her too agressive etc etc. Decision she HAS TO BE MOVED. A month later and I still do not know where she is going, nothing heard, I am not allowed to see her because they cant cope with her when I leave, I have only seen her for 10 minutes 4 times since she left. I may not now be caring for her but I have to care for myself, I am say at times distraught, last night I cried myself to sleep AGAIN the loanlyness is unbearable at times I think of getting her back but know I cant cope, I think of taking my own life go hypo and not come out of it. It is worse than her dying, Requim Mass and interrment and closure, here there is no closure. Carers need some help once they stop caring, the house is full of shared memories and her things, I can't bring myself even to start to sort them out yet. Sorry about spelling and punctuation also typos but I have no time to proof read this. I am going to ring her care manager and see if there is any news, oh yes, nither the Church in spite of promises or GP's were any help I was just offered anti depressents! I feel used and abused by the system and by the government for lack of funding I started paying stams at 14 where is the justice when we need help there is none or the goal posts get moved! My wife
Margaret | 24/04/2007 16:55:00
My daughter is 27 and was born with spina bifida. She has a fairly moderate disability but also suffers with M.E. which is a disability in itself. She's on Disability Living Allowance, but only at the lower rate so I can't claim carers allowance even though I'm her carer. She can walk but needs an arm to support her, so she never goes out on her own. I take her to buy all her daily needs and clothes shopping. My husband and I also take her out for recreation, like strolling along our local beach and on holidays. She needs to have regular exercise to keep her limbs mobile and also to help fight the depression she has with M.E. I cannot leave her in the house for long periods because she gets depressed easily. She is very small in stature so can't reach high cupboards, nor can she lift heavy saucepans or roasting pans. In short, the M.E. has made her fragile and we would never leave her overnight on her own. Once she cut her foot while we were out and she practically fainted. (We have a son who happend to be home and took care of her). Yet, she is only assessed as being eligible for lower rate DLA and I can't claim anything for being her carer. I know someone who legitamately receives the lower rate of DLA and she isn't disabled and can drive herself anywhere. She doesn't need a carer. Where is the fairness of this? There is a large gap between her and my daughter. When my daughter's allowance is up for renewal, we will fight for the middle rate, but we're not hopeful. I don't resent looking after my daughter but I do feel the State are not taking our problems seriously.
Margaret Spill | 24/04/2007 17:14:00
Paul W. My heart goes out to you. You have had such a dreadful time and I can only imagine how worn out you are with it all and as you say, even feeling suicidal. You seem to have got to the point where life isn't worth living. As you say, you have no closure and you now need to care for yourself. If someone dies, you can go through a normal grieving process, but in effect, the wife you knew is no longer and so you must be grieving, yet the grieiving goes on while she is alive. Dementia of a loved one much be a dreadful thing to cope with. My father-in-law has dementia and my mother-in-law finds it hard. . I'm sorry that the church let you down. Could you find another church who would give you support? There are good churches if you look around with people within who care. You need a time of recuperation yourself - can you have a holiday? It would be a start. I read you are very lonely. Do you have friends to go out with or visit? Could you join a club or a fellowship meeting for elderly people in a church? I beg you not to take your own life, although I understand the reasons. People reading your story will care very much what you are going through. You have been abused by the system, but you are still a special human being. Don't let anyone strip you of your self-respect. I hope you will feel better as time goes on and my prayers are with you.
katy-lou | 24/04/2007 17:41:00
I think it,s about time the covernment gave you a couple of rest bite weeks a year. I look after my parents 24/7 for the last 3 years.I have had 6 days off in that time because it costs me £300 pound a week for rest bite. I only get the carers alowence so getting a break is way out of reach for me.If i carry on the way i am i will be 2 ill to care for my parents.
Dreammaster | 24/04/2007 19:41:00
Help from social security your having a laugh, not long ago my wife had to go into hospital to have her hands operated on as she contracted carpol tunnel syndrome which meant when she had the operation she had to rest her hands and as we have a 16 yrs old disabled daughter who has cerebral palsy, hydrocephalus, epilepsy we thought we would be able to get our daughter into repsite care so we contacted our so called social worker to help us but we were turned down flat but we were offered some outside carers to come in at 7am and 4pm to change our daughter as she is incontinent and bath her, so in between there was no-one, now i had an heart attack and have had a triple bypass and i get out of breath very easily so doing my daughter was a total nightmare, and my wife ended up changing our daughter in between the carers coming in, so don't talk to me about help from social services because their is virtually none. and has for the charter it does not go far enough and it's about time the government paid us the carers more money instead of handing money out to foreign countries it's us the people that look after these disabled people that need the money, in fact it we should be treat as working people because us that care for the disabled are actually workers 24hrs a day, i can't see tony blair or the labour party doing what we do can you?
Ann | 24/04/2007 20:42:00
• Firstly were you contacted by social services? No, I had to contact them, and it took several phone calls to find the right department.that was 2 years after my caree had first become longterm sick & disabled 1 year after he'd been medically retired, and 6 months after he had been rehoused because of his disablity. Carers are not a priority. I was shown that repeatedly. • What happened during your assessment? Questions asked of my caree, but not many of me - seeing as I wasn't living in the same borough at the time, I clearly wasn't regarded as their responsibility.. • What was the outcome? Tap turners for kitchen (didn't fit well so we took them off), pull down bed bar, and bathroom converted to wetroom with perching stool. • Overall has it improved your situation? Having a usable bathroom for my caree has improved my life hugely, but I shouldn't have had to plead, and beg for it, to the extent that I had to say that rather than use the (unsuitable ) bathing service my caree would make do with strip washes and wipes for as long as it took to fund making the bathroom accessible and usable.. • What improvements would you suggest to the process? Be easier to contact, more proactive, and make fewer excuses! Be more flexible - and how about treating carers as part of the solution, not an inconvenience? BTW it is IMHO unhelpful that even if you get a carer's assessment, nothing you are assessed as needing has to be actually provided if the area lacks funding - grrr!
gill bainbridge | 24/04/2007 22:52:00
I am a carer for my husband on his initial diagnosis of emphyczema, and a whole hos tof other ailments that seem to be ever increasing- we were contacted by social services and then OT who surveyed both my husband and his needs for changes so we could stay put in our home. The changes have enabled this and very soon more changes are to be done as his condition deteriorates. The issue I did have at the time was alongside the OT we were also asked if we wished to move , but we would only be entitled to a bungalow and not our children as they were over the age of 16 even though they were at home, and they would not necessarily be able to stay in the home they were born in. Ramps, stairlifts, and other aids have been added to the rpoperty and very soon a shower will follow as I now am unable to lift my husband through problems of my own. To Paul my heart goes out to you, in my childhood I lived in a caring family unit of mother, brother, father and granmother. Gran at the age of 70 started showing the signs of dementia causing lots of disruption to the house. Drinking paint, accusing my dad of allsorts, hdiing things, sticking matchsticks in her hair, throwing money on the fire, telling complete strangers through the window that she was being held prisoner, getting up at 3am in the morning and switching the gas taps on, and dragging me out of bed (I shared with gran until I was 16 and she passed away). It seems there are systems now to help but the communication is not good about these systems. I know how lonely it can feel but have no doubt that there are people meant to help and provide a service to assist you. Be determined , my experiences at a young age have meant I am now that- very determined on behalf of my husband, and also determioned that I too should make a difference as my also suffered the same, and I expect too in the not too distant future. My prayers to you, and hopefully those of others to give you strength.
Jane | 25/04/2007 13:20:00
I am a full time care for my Mother in law , we didnt have a choice as she refused to go into sheltered housing and told us either we have her or she stayed in the house she was in on her own .which wasnt an option and we have never been personally contacted by social services , all was done by phone and forms , so we have never been assessed face to face with anyone .I was given the basic carers allowancefor being a full time carer , this was stopped when I reached my 60th birthday as I quallified for my state pension ( which silly me thought was mine to do what I wanted with , I had worked from the age of fifteen until I had to stop work at fifty five to be a carer , ) and for those who think the pension is for you alone , no its not , it covers being a carer, which is more than carers allowance but as all other carers will tell you it still doesnt help to pay for her keep , Dont know about others but my Mother in law doesnt give us any money towards her keep as she says I get paid for looking after her .If someone had came to assess us maybe they would have been able to understand our situation and more of the help that we reallly need may have been understood and taken on board . Things will never get any better for us until my Mother in law passes on ,as one of us have to be there all the time , no breaks together as Husband and Wife because Mother in law wont go into respite, and who knows what physical and mental state we will be in by then , at the moment both my Husband and myselve suffer from severe arthritis and find it hard to look after ourselves never mind someone else ,as time goes on we are only going to get worse and we are determined even if we were in the same country as our children they will never ever be allowed to take us into their home to care for us , that is another no no for us we cant move over to Australia to be near our family , which was our dream . Dont think anything will improve in my life time , just hope and pray things will be better for carers in the future ,as they are a cheaper option for the the goverment . Attendance allowance should be given to the carer not the caree as we never see a penny of it , all extras and more is paid out of our pockets . I have often discussed with my Husband what would help us with coping as carers , first more money so we can have a bit better standard of living but most of all if it was compulsary for the caree to go to somewhere at least once a week for the day and two weeks a year to give the careres a much needed break , as in the case of Mother in law she will not go anywhere unless she is with us , so we dont get a rest at all . If I had known what live was going to be like and a stronger person five years ago I would have refused to take his Mother in , as we have had no live of our own , argue more than we ever had pre caring days and all caused by the caree . I do realise compared to most of the other people who has wrote to you I am one of the so called lucky ones ?? As you will realise you got me on a very bad day . Goodl luck to all the rest of th Carers and pray that thigs will improve for us aall .
Janet Aveling. | 25/04/2007 17:41:00
I care for my elderly parents and an aunt, all in their eighties but all living in their own homes. I clean and help with shopping, cooking, hospital visits. Any outings or holidays are always with my husband and I. My dad has dementia, bowel and liver cancer. My mum has heart and thyroid problems. My aunt has diabetes, gout, circulation problems is blind in one eye and has visual problems in the other eye, and mobility problems. I spend all my time running around after them and although I love them dearly, I get rather exhausted. None of my work is recognised under the catagory of "carer" and there is no help available as far as I can discover. Certainly no financial help. They do pay for their shopping, thankfully, but other expenses are left to my husband.
malbet | 25/04/2007 18:43:00
My wife had a stroke 4yrs ago she has been going to a disability work shop to help her with memory and movement. At first she had a taxi thenshe drove herself sometimes.# Social services phone to make an appointment to see her as they funded her and due to the goverments cut backs she needed to be reassessded after three years. Not only did they take her taxi which we expected they also sztopped her going to the Centre even though nothing had changed in her circumstances. I think social service need to be run by a inderpendent body and they should not be the ones to assess disabled people but the professionals like nurses who should be involved. An irate carer, who saves the goverment thousens of pounds a year.
Kathryn | 25/04/2007 22:57:00
I have never heard of this avct before today. I hav been my husbands carer for about seven years now, he has sleep apnoea,copd,diabetes and had a heart attack seven years ago at the age of 38. We have never had an assesment or help from anyone, apart from our Gp who has been excellent, especialy when we lost our house because we could no longer keep the mortgage repayments going and had to be rehoused - not an experience I would like to go through again. Not only did I have to look after my husband 24/7, and 2 children but I also had to pack up a house and deal with our local housing department! No wonder I have greying hair!
Cheril the Peril | 26/04/2007 07:33:00
I've been a Carer for my Mother for about 12 years. I heard about the Carers Assessment a few years ago. I didn't have much faith in it because although Carers are entitled to the Assessment the local authority are not legally obliged to act on the findings of the Assessment. Eventually I decided I might as well give the Assessment a go, nothing to lose. After asking for an assessment I waited for months and months before they could "fit me in". The assessment lead to my Mother going into Respite Care for up to 4 weeks a year. Well, it is lovely to have a break, but I greatly resent the fact that for ME to have a break my Mother has to have a Financial Assessment every year. And she has to pay for the Respite Care! And she has to pay far more than I recieve in Carers Allowance! Whats that about, it is entirely wrong that any of us should have to pay for Respite Care.
Cheril the Peril | 26/04/2007 07:52:00
Ultimately what Carers need is not these half baked laws and acts, none of which go far enough to support Carers. What we really need is more money, and more real and reliable physical support. It is disgraceful that Carers are left to struggle financially. Lose their homes because they are unable to keep up with the mortgage repayments. The amount of Carers Allowance £48.65 is a joke. (A cruel one). It should not be means tested (another cruel joke). We should not have to pay for Respite Care. This and preceding government have made statements about Carers that are the finest example of double talk that ever seen. "We greatly appreciate and recognise the commitment of Carers, and their contribution to society" and " Carers are not a priority". Every person in this country should wake up to the very real fact that any time now they coiuld be a Carer or Cared for. The general public for the most part are ignorant of the facts of a Carers life. Until it happens to them. Often because of lack of information they don't even realise that they are Carers, and consquently don't claim the Allowance or apply for any of the support services available.
Paul W | 26/04/2007 09:22:00
Further to my earlier comment, my wife now has to be moved, it has been necessary since 30th March when her existing care home stated that they could not manage her. Nothing heard, an email produced the following reply yesterday Paul, I am still waiting for the R.N.C.C assessor to get back to me with what funding level has agreed. I shall contact them today to see what is the hol p.Barbara
manchild | 26/04/2007 13:16:00
Never heard of this Act until today. I have had no contact with social services at all. I have been a carer for nearly 4 years now and feel totally isolated. My biggest concern is that the carers allowance i get is then deducted from my wifes income support, so the little i do get for caring is paid for by my wife. I feel i am being persecuted for caring and that financially i would be better off leaving my wife and family.
Doreen Stokes | 26/04/2007 14:39:00
My husband & I are carers for each other. He having had a heart attack in September 2003 & I having osteo arthritis in my spine & hip, also degenerative spondylitis. At present we are both able to get out & about although my mobility is restricted. for both of us it is a case of taking each day at a time. My husband at the age of 60 was unable to continue working following his heart attack & I had to finish work due to my condition at the age of 58, I didn't know that there was a "Carers Act", nor was I aware that you caould get an allowance for being a carer.
Jane | 26/04/2007 15:06:00
After reading all the other Carers letters , I realise that there is many others in the same boat as my Husband and I and lots a hundred times worse of than us . How can we get through to the appropriate people that we are not trained carers and can not clock off after an eight hour shift and go home and have a life . As most of the others I had to give up a well paid job , which I had intended to continue in for a few more years to be able to add to our savings for our retirement ,so that we would have some extra cash , this will never happen and will have to scrimp when my Husband retires as most of our savings have had to be used for for day to day expenses ,and Im sure that most of the others will be in the same boat . What angers me is seeing people who have never worked and dont intend to reap all the benefits going where us mugs get £46.65 per week and lose it when you get to pension age , for working hours that would be deemed illegal in an office or factory .
Nick | 27/04/2007 11:48:00
I as a lot of others had no idea this act was in progress. I have been a carer of my wife since 1980, and in all that time only ever asked Social Services for one thing, "To put a drive in for me" guess what they refused so I have never troubled them again. Do they really care? not one bit they couldn't give a damn about anyone, if it's going to cost them money then you don't count. Have fun.
susan jones | 27/04/2007 11:48:00
being both carer to my husband and profesionally in a care home.its about time all carers had some reconision for their efforts.and it would be nice if the relatives of clients in the care homes remember that we do the job that they find uanble to do themselves please spare a thought when you complain .remembering that it is often several people these carers are looking after and not just one
Viv | 27/04/2007 11:50:00
I am the main carer for my husband who is 61 and suffers from severe Alzheimer’s. He has had it coming on for about 8 years and was officially diagnosed 5 years ago. Our GP and Surgery are brilliant with lots of moral support and advice. At the beginning the Council were quite good and did an initial assessment on us both but at that stage we were coping quite well on our own and my husband didn’t want to go to the Day Care Centre as he was very aware of things and others less fortunate distressed him. In May 2006 he did need and was given a place at a special Day Care Centre which cost the Council £70.00 a day. In August the medics advised another day for us both and again it was given but very reluctantly and I had to get both doctors involved in the issue. In November a 3rd day was recommended but the Council said NO and I arranged private funding for it as we both needed the time. In March 2007 all Social Service funding for Respite Care was withdraw as of 31st. March and we were left with nothing!!!! Absolutely NOTHING. I argued with them and asked for reassessments as we had not been assessed for almost two years. They said they had a backlog and funding was very tight. It took me over 3 weeks to get a District Nurse to call to assess my husband for incontinence pads!!! My husband solved the problem himself on the 25th March. He went out for a walk with out my consent, tripped and fell and was admitted to hospital. The staff have been brilliant. His medication has been changed under supervision. Previously we were given new tablets and left to try and work it out for ourselves. Not a good idea. My husband was aggressive and I had to call 999 twice to help with various problems. All a drain on Tax Payers money. The staff were amazed that I had been able to cope almost on my own for so long. They advised me not to take him out of hospital until a proper Care Package was put in place. The Council have reinstated his TWO DAYS but not offered the third. My husband is now doubly incontinent, makes no eye contact, can’t answer questions, speaks very little and you cannot prompt him to do certain things. It is like looking after a very big baby all on your own. The Council have assessed him at long last and are coming to reassess me on Wednesday. What help they will offer remains to be seen. We have a house of our own and some savings so you can guess who will be paying can’t you? We have both worked and paid our dues. We have brought up three children without asking for help or support and now this. I wonder if Tony and Cherrie or Gordon and Sarah would like a new job? They are pretty S**t at the ones they are doing now.
Mike | 27/04/2007 17:54:00
Not heard of the Act until now. Social Services not contacted me here in Wales.
Sue | 27/04/2007 17:54:00
Elizabeth Henderson | 19/04/2007 I thought I should reply to Elizabeths post as dated above concerning Carers Allowence for her husband, my father claims carers allowence for for mother and has been doing for around a year, my point is that they are both 75 years old and recieve Pensions so I am at a loss as to see why you cannot claim it. I must admit that until my sister in law, who works with the elderly, mentioned it to them they had no idea it could be claimed. I would strongly urge Elizabeth to look into it again and perhaps see someone at her local CAB who has knowledge of Carers Allowence for the elderly as I really am sure that she should be entitled to it, her husband may also be entitled to other benefits such as the alternative Disability Allowence which is also available to those over Pension Age, I am sorry but I dont know what this Benefit is called.
Maggie | 27/04/2007 18:59:00
So, we save the government 57 billion per annum. I am pleased to hear it! I was caring for my mother for 15 years. The last few years more intentley so I was not able to go to work then. Social Services told me to take £45 per week out of her pension for my expenses (looking after her and taking her for appointments etc.) as, if I was to claim this it would come out of her pension anyway. Fair enough. Unfortunately, my mother died this February. So, at the age of 59 I am now able to commit myself to employment. Does anyone want me though at my age and with lack of work experience over the last few years? Apparently not. So, I think the government have had more than a fair deal!
MM | 27/04/2007 23:03:00
Parent carers can't have a true carers assesment.A child has a "core assesment" which is supposed to take in to account all the families needs.In my area most parents are not told that they are having an assesment at the same time so are unaware.Often the child may not meet the criteria to recive a service from social services so the carer gets nothing it's a disgrace.Carers health is never addressed as if anyone comes into the home to care for your child or they are lucky enough to have respite all the staff are not allowed to lift etc and have recieved lots of training.What about carers? The medication situation is ridiculous recently the home carers have been told they are not allowed to make up drinks that have to be thickened as the thickner is classed as a prescribed drug.Heath & saftey etc is making life for carers and those needing care intolorable.Lets have some common sense please!
Viv | 28/04/2007 01:06:00
In reply to Sue 27/04/2007 17:54:00 I was under the impression that you could not draw an old age pension and Carers Allowance. If you ca, I have been deprived of it for nearly 18 months.
Andrea Slater | 28/04/2007 03:16:00
I ujnderstand a lot of these people as I am a Carer for my 28yr old son who has Aspergers Syndrome and I only knew he had it about 2 years ago and it is true about the Carers allowance it is a pittance and like all other Carers I look after him 24/7 and without a break. I could not leave him with anyone as he and I know each other and habits and moods etc.
Jane | 28/04/2007 10:08:00
In reply to Viv 28/4 , I asked why I could no longer claim the carers allowance when I started to receive my pension and was told because my pension was more than the carers allowance ,on Monday I am going to call the local CAB office and find out what and if people like me and Viv can expect to receive careres allowance along with our pension . I will let you know the outcome .
Jane | 28/04/2007 10:22:00
Just a thought , would it not be a good idea to send all our messages to all the goverment that we have at the moment and all the other parties who are standing for election , mind you they would probably look at it and shove them to the bottom of the pile to be looked at , when they have nothing better to do .
Peter | 29/04/2007 09:35:00
I care for my wife, who is a lot younger than myself and suffers from Bipolar Affective disorder. As i work, i am unable to have any kind of benefit that i am eligible for, although i am low paid in comparison to other parts of the country. I have had an assessment on my role as a carer carried by social services which was enabled by the carer support link in devon. prior to this i coped on my own without any kind of help. took 8 months to get counselling for my wife, over a year to get an appointment with mental healtgh services and that did not materialise until my wife had been in a & e several times with Od and other injuries. took over 2 years to get a diagnosis and although she sees a clinical psychologist, there is a danger that this time limited and we will be left on our own again without any kind of intervention. Carers are a cheap labour pool that save a lot of money and resources, we just need that extra bit of help without having to fill in forms that take hours to understand before you actually write anything. The only help we have got has been from charities which has allowed my wife to have a weeks respite care and for me to have the electrics repaired as we had no lighting in the back of the house for over a year and i finally repaired myself as could not get an electrician to do it. I look after my wife 24/7 without any help at all, i work and run the home, walk the dog etc., i have to sleep with one eye open because my wife gets confused and may injure herself, the medication has doubled her bodyweight and she has arthritis in her knees which makes it difficult for her to walk far without distress, but we were denied further help when we applied for a reassessment. we cannot even get help with medication that my wife is likely to be on for the rest of her life. My wife is slowly making progress but not because of any government intervention. I, as a carer, however get very little support apart from get-togethers with other carers that occur during the day and i am working so cannot attend. there is a helpline that i can phone, email if i need advice otherwise it is down to helping myself. local services advertise all these schemes that offer help, but not the help we actually need, whilst slashing facilities that offer a break for a few hours, because mental health is an easy target and doesn't have a 'voice' like other more vociferous groups.
Peter | 29/04/2007 09:48:00
as an addendum to previous post, i had an assessment on my role as a carer carried out by social services, i was classed as higher level because of my wife's mental health problems. has it benefited me? Not inthe least as any eligibility for help/services is generally cancelled out by the fact that i work, my wife does not trust strangers so it is down to me. i have never been offered a 'sitting service' to give me a break so you cope the best way thta you can!!
Cath | 30/04/2007 15:34:00
I have cared for my grandmother, who is 90 for the past ten years,helped in the last five years by my sister. I now steer clear of social services as I have found them to be singularly unhelpful. As Peter says I am ineligible for any financial help because I work. My sister and I do shifts around my Grandmother's needs and are only able to do this because we are lucky enough to work for a statuatory organisation with flexible working policies.The only time I managed to get any kind of assistance was a week's respite for Gran after I had been ill and hospitalised myself.The care home she was placed in was like something out of One Flew Over a Cuckoo's Nest and after two days we had to go and collect her as she was terrified and crying all the time. It took her months to recover and two years later she still wonders what became of the other people in the home,she was really traumatised by the treatment of some of the clients by the staff.We reported the facility to the relevant authorities but they appear to have taken no action.If I wasn't so exhausted and ground down by the whole thing I would have taken it further.I think that Social Services rely on the fact that carers have little or no time or emotional energy left to wade through the endless layers of bureaucracy it takes to get any action from them.
Chris | 30/04/2007 16:36:00
I feel totally alone as a Carer, I don't recieve Carers Allowance as I get a pension although I have the underlying right. Recently my husband, who suffers from Dementia, went into hospital with a UTI, well known to cause confusuion in the elderly, he was discharged one day later although unable to walk across the room unaided and not knowing what he was doing at all I was disgusted at the lack of support although I did eventually get a visit from occupational therapists with a couple of bottles for my husband to urinate in, that was it. Although I'm not in the best of health myself with knee and heart problems I could not contemplate going in for my knee replacement as I could not afford the time away and recouperating, it's all a complete shambles, the government does not care one jot, too busy congrulating it'self on another pay rise and pension increase. God help us if Gordon gets in, send him and all the other Scottish representatives back where they belong unless they are prepared to give us all the priviledges that the Scottish have get and get them to pay for it as we do them !!!!!
Julie | 01/05/2007 07:13:00
I am a carer for my mother who is 77 and very active and such a head on her shoulders. I rang social services to find out about carers allowance and found them to be really good and arranged someone to come out to see my Mum and I. The appoint ment was only a couple of weeks away and when she came she was really friendly and helped us fill the forms in and within 2 weeks my Mum was getting the benefit. She also arranged with someone to come and put a stair rail and bath seat in. Any one wanting help to fill in forms contact your social servives and they would help you with pleasure.
Janet | 01/05/2007 12:25:00
I am a carer in my work place and at home for my son. I receive no carers allowance for my son as they have told me because i work I am not entitled to it as I cannot care for my son and be in work at the same time, this I understand but I am not in work 24/7 and I have to arrange for family to be on hand for my son but as a single parent i have to work,and the time out is good for me and my son, I don't seem to be able to find an answer for us both
Marion39 | 02/05/2007 14:43:00
Im writing in the hope of a response from a Mr John Giles who posted his blog on the 20th April at 9am. In his, he tells of looking after his wife who will be undergoing botox injections because of her Parkinsons' Disease. I would just like to know, what they're for, what they do? Do they help? I currently look after my 82yr old mum, who suffers from the same disease and would love any info. I hope your reading this John. Marion
debbie | 03/05/2007 17:03:00
i am a carer for my husband who has cervical/lumber sponylosis and a bowel condition. i cannot praisesocial services enough. 2 years w had lots of adaptations dneon the house, moved the stairs to have a stair lift fitted and complete change around in teh bathroo to allow for a disabled shower. without this work my husband would either be lving downstairs or upstairs. It annoysme the fact that carers wh care for a friend or member fothe family are not resognised as carers and so we are paid penats for doing it when in fact we are saving the government thousands nd if we was to be able to go work n a care homethen we would get minimum wage for may be an 8 hour day. my care role is 24/7.
Rogerpine | 03/05/2007 20:52:00
I am a carer for my wife who has Breast Cancer(18 mths into treatment) & she is a carer for me,3 types of arthritis & coronary artery disease.we help each other out as best we can.I have no contact with Social Services & know nothing about this act.I fill in forms to get Incapacity Benefit & DLA.Happy at that for now until things get worst.
Jane | 04/05/2007 15:54:00
I care for my husband, who suffers with cerebral palsy. It would be nice to get the proper recognition from all government departments of the work that I, and millions like me do. If withdrew our care what mess would social services be in and would the be able to cope?
ANNIE | 04/05/2007 17:14:00
Reading the posts on this site, really makes me angry, Carers Act, just something else to try and make the Government look as if they are doing something. Our Social Services are rated one of the worst in the country and dont carers know it. Assessments yes they are carried out, after you ring and request one, what happens after they carry out the assessment, which is done over the telephone, well bet you have all guessed, NOTHING. I asked for a copy of my assessment, which I received, what did it say, you have guessed again,NOTHING,So I rang SS and asked were where the conclusions as I always thought after any assessment there should be a conclusion. I was told that the assessment form was forwarded to your social worker, who would contact you to discuss the assessment, I waited 4 months and NOTHING, so I rang my social worker and asked,"What happens to Carers Assessments after you receive them, her reply was they were filed....very helpful. I have been caring for my husband for 11 years after 2 massive strokes left him without speech and mobility, everything I have ever enquired about through SS has been met by a brick wall...Like so many others on this site, I would love sometime to do what I wanted to do, but also like everyone else I put my caring roll first. Another thing that makes me angry is that in 2 years time I reach 60, my carers allowance will be withdrawn. Do we stop caring? Perhaps some Government minister would like to spend a week with a carer and then perhaps we would be better thought of
marly | 07/05/2007 21:43:00
I'm not too sure if I fill the criteria for this survey as I support/care for my brother who is at present trying to overcome a heroin/crack habit.He is doing really well but recently had a motorbike accident which has left him with 2 broken arms. As you may imagine, he is struggling to do the basics. I have had to give up my college course, which would of led me on to uni next year to become a phsyciatric nurse. Social Services are involved because of the previous drug history but as regards to any help with the care of my brother, all they have done is pat me on the back and tell me what a good job I am doing.I haven't been informed of any financial support or of any physical or mental support. I feel totally isolated and on my own, as does my brother, the injuries he sustained will not leave him totally reliant, but, the drug rehab is ongoing and forever. I have a daughter of my own and also have residency of another child that has come from a drug background. The only input I have from ss is when they think to contact me because they have recieved a malicious letter or phone call. I am at my wits end and hope that the goverment take a massive reality check on how they are letting the whole society down, at the end of the day, blood is thicker than water, but assistance in keeping the boat afloet is a nescessity not a luxory. Help all that need it please, we all have feelings, emotions, needs and also a cut off point where we are unable to muster any more strength. please e-mail me if you want to discuss this further.
Jenanda | 08/05/2007 20:34:00
I earn too much to be allowed carers allowance - its a pittance anyway so how is one expected to live on it? Why not suggest to the government their disgust at the amount they are offering for a 24/7 job!
M | 09/05/2007 08:03:00
The friend for whom I was caring died two weeks ago, at home, as he wished. This would not have been possible without the fantastic support we had from Health and Social Services. Our District Nurse was brilliant and we had incredible support from the occupational therapy service in Social Services. The Social worker came on the scene late in the day, but he visited the day he received the referral. We couldn't have asked for better support, and I should know as I'm an ex Social Services Manager and ex-CEO of a Charity for disabled people.
Paul Cross | 09/05/2007 10:27:00
My wife and I help our daughter by looking after our grandson who suffers from Landau Kleffner syndrome. He just stays overnight or for a couple of days at a time but it is the only way for her to get a break. She was forced to change her doctor as her local practice was required to treat asylum seekers/refugees over the local people who now have find other practices to take them. We enjoy looking after our grandson as he keeps us young (tired) but young. We are Lucky in that we are a close family and support each other as not much help is available from the Health Service.
Barry | 21/05/2007 17:22:00
I care for my wife, an amputee and, more pertinently, who now suffers with a dissociative mental health condition. The local Mental Health team advised me of the "Care Assessment" requirement. The meeting with the Social worker has just been held and I await the findings and action plan. As a pensioner my income ensures that I will get no state benefits. At this time I would appear to have satisfied the bureaucratic requirement of recording our family position and do not expect to hear any more about respite care, domestic assistance etc. I will post again if anything actually happens. (PS I knew nothing of the "2004" Act and was not introduced to it at any time by any of the Professionals)
Derby | 27/05/2007 15:42:00
social worker contact me to ask if i require a carers assessment, your having a laugh, 33 years I've been a carer, when carers assessment first came out I insisted I received an assesment, not worth the paper it's written on, nothing changed. Never been asked since. just been left to get on with it.
Lorraine | 28/05/2007 23:15:00
I care for my 26 yr old son who has various conditions making him disabled.I have heard of a carers act but not really seen any evidence of, no assessments on myself or my sons needs. I have just been diagnosed as having copd but will not stop caring as long as I have a breath. I receive no benefits ( my son receives dla and income support and Im his appointee but thats it.) I do a part time job 10 hrs a week. 2 hrs a day. my hubby or my parents take on the caring role for me then for which Im grateful as it allows me a bit of respite but he goes no where else.
Mrs Arnold | 09/04/2008 21:43:00
I need much more than an hour a week respite from Clive Arnold - I want my life back. He doesnt actually care for me, all he does is spend 24/7 on the computer moaning about how terrible his life is...actually I do most of the cooking and cleaning around here....the man is a complete sham.
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