Your Stories
After Claire's Story, Your Stories
April 25, 2008

360blogclairebatesnoah You may have read Claire's account of what it's like to look after her son Noah, who has cerebral palsy.

If you haven't, you should, even if you read nothing else on the site today.  Thousands have, and were moved to add their comments at the bottom.

Claire's not looking for sympathy - her life is her life.  She wants others to recognise what thousands of people like her do 24/7, day in, day out:

"I wrote this because I want someone, somewhere to sit up and take notice of people like us and understand it's a bloody hard job, with pitiful pay and little respect.", she told us.

We want to help carers get that recognition, so now it's over to you.

After Claire's story, it's time for Your Stories:

We want to hear from carers in Britain who spend their lives caring for a loved one.  If you're not a carer, maybe you know someone who is - in which case please forward this page on, so he or she can contribute.

Written by Sky News, April 25, 2008

Comments

I am a parent of an 8 yrs old Autistic child. I am not able to get carers allowance because i work in a school & my money is good.
We have prievously had to sort child care out between myself & my husband, as our son won't go to just anyone. He is not keen on going to his grandparents (to which he only has 1 set)who love him to bits
We have had to fight tooth & nail to get our son where he is today & to the socially accepted manner he now has. We have had to appeal recently to his DLA as they cut it from higher personal & getting around rate to the lowest level.
He has no road sense & has to be held by the hand yet we are not entitled to motability, he just drops to the ground & starts going off on one & people just tutt & 'moan about him being uncontrollable'. We wish - life on a daily basis is a struggle - especially getting him dressed to go to school.
I would gladly invite someone from the government to stay a few days & just see what we have to cope with.
I am now lucky i have changed my job to fit in with school hours & no longer work at the evening - but it's taken my son nearly 12 mths to get used to this.
The government need to listen to parents like Claire & myself & others like us. Instead of just ignoring our pleas.


This is not only about parents caring for their children. There are a lot of children caring for parents.
Although I am 53 years old I care for my 83 year old father following a stroke he had 6 years ago. It was my choice to give up my life to care for him 24/7 but my "wages" are an insult. We have to pay for a sitting service for father as he cant be left on his own. I have 4 hours one day and 3 hours later in the week. "Me" time, I dont think so! Food shopping and running other errands, and if I need to make an appointment anywhere (doctors, dentist etc.,) its a nightmare. Nobody realises what its like to care for family members outside of a caring situation, least of all our Government. I love father dearly, but would think twice if I found myself in a similiar situation in the future. And thats sad.


i think it should be made illegall for kids adopted at birth not to be told who their real parents are i mean they have all the right to know dont you.


Hi, My 5 daughters all have lukeemia and my oldest daughter as breast cancer as well. My 3 sons all have, epelpsy, adhd and cebral palsey. I am shocked that no-1 helps me and i am shortly getting evicted because i am a single mother A
living in a Army House because no-1 is letting me rent a council house cos i have 8 disabled children. I may seem the avrage Single mother at the school gates, but my life is far from perfect. Labour, ur not getting my vote next yr, i'm sorry but i cant if my disabled family is homless. And to mention, i have tourettes and dyslexcia and no-1 helps me because of it. I think somone should do somehting about this as no mother living in england should put up with. I'm sorry to say it, England is a bad place if people get treated badly like me.


My son aged 18 now has severe learning difficulties and spastic quadriplegia, he is unable to sit or stand unaided, is cortically blind and unable to communicate verbally. He has fluids through a gastrostomy and requires 24 hour care.(By the way he is also very handsome and absolutely adorable.)
What I want to touch upon is the transition from being a child to being an adult which if not planned properly can lead to disaster. We have been told that adult services are much worse than child services although we have been working hard with our adult team to plan for our son's future (care, accommodation etc). Having your adult disabled son or daughter living at home with you may be the choice of the parent and the young adult, on the other hand no other choice may have been offered other than some dreadful institutional care home. Young James Hughes who died was living at home. Was this, I wonder, the free choice of James and his mother, or was no good viable other option offered? The stress involved in caring at home is understood by very few people outside the circle of carers.


As mum and full time carer to an autistic child, I am regularly involved with local and national campaigns by the National Autistic Society. Their latest, "I exist" is aimed at raising awareness of the plight of adult autistics who are often isolated and ignored. One of the aims of the campaign was to encourage the government to fund social initiatives to help alleviate the lonliness of autistic people and to provide their carers with support. The governmenrts response? To allocate £150,000 NATIONALLY OVER 3 YEARS! Well, good luck with that then. There are estimated to be well over half a million people in need of these services. Anybody care to calculate how much per head that comes in at?

Gordon Brown has just allocated £100 MILLION this year alone to provide mosquito nets to Africa. Hasnt he ever heard charity begins at home. It's time this government stopped paying lip service to the plight of carers and the disabled and put their money where their mouths are.


I think we are all in the same BIG boat,one way or another !! As the father of a severly disabled 3 year old with an undiagnosed neuro degenerative disorder I can truley relate to the stories telling of your frustrations and arguments many of you have written. Carers allowance is worth 2 bob, considering how long it takes to get it and how many forms you must complete. Caring for a child who requires 24 hr is a job on it's own. Why are so much of our taxes spent on MP's expenses, immigrants housing, the prison service, building olympic villages and I am sure the list goes on.
I am now having to move the family home and increase my already large mortgage as my current home cannot be adapted easily enough for lifts, ramps and a special bathing area and eqpt.Do the government help ...No ! because I work and bring in more than £35k pa. The only way to get better help is for me to give up my job and sign on and milk the government for carers allowance , housing benefit etc..
God Bless us all


There is a campaign on this already: the Every Disabled Child Matters campaign, which is pushing government to provide better support for families with disabled children.

The more people that sign up, the more government will have to sit up and listen...


Hi I am really glad that the injustices re caring for a disabled child in our society are at last being given a voice. My child Isabelle, has autism and epilepsy and is at the moment very hormonal.Her behaviours impact upon my other two children all the time. She screams and lashes out and our home feels as if it is constantly undersiege. I have to shadow her at home and life is never relaxing or fun. An example of the behaviours that are dangerous include holding my youngest child underwater in the bath and pushing her siblings downstairs. Sometimes it seems unmanageable but like everyone else commenting here you just hope for the best because there is no help available. Where we used to live the special school my child attended provided provision for some of the holiday time. This was helpful in keeping Isabelle on an even keel, as it didn't disrupt her routine too much and my other children got to have some time and attention.When we moved to Lincs I approached the disability team to ask about out of school holiday provision for disabled children. There is none. Shameful.I feel quite isolated here as people find her behaviour uncomfortable to witness. She shouts and growls a lot.The impact upon my other children distresses me. I feel badly about having to turn down my childrens requests to have friends over but I cannot put other children at risk when Isabelle is so unpredictably aggressive.I do feel embarrassed when we attempt any outings, however modest, to have my child shout nasty things and have tantrums with scant regard for those around her. It has got to the point where I need another adult with me if I have my other children with me to keep them all safe. My partner works extremely hard as a deputy head as only one of us can work. I gave up my career as a teacher when my daughter was diagnosed as the childcare costs meant it would be impossible....there is also the small issue of who wants to childmind a very challenging child.I hope something comes of this issue as lots of people are very distressed and it seems society is turning a blind eye.It is said you can judge a society on how it treats its weakest members. Well we are failing as a nation. Big time.


Will Sky news send these stories to Gordon Brown?

Who can lead a campaign?

It is always down to those with least time and major commitments to make time to fight for change.

The government of this country makes an absolute mockery of carers. We are over a huge emotional barrel where our feet will never touch the ground. No of us will abandon our cared for loved ones in protest so what are we to do?


My son niki is mentally handicapped and I have cared for him all his life. Now that I have reached Sixty the carers money is stopped,Do the goverment think that we stop caring at this point


JUST ONE WISH:
We have a handsome, adorable, unique young son. Alex is 14, he suffers with spastic quadraplegic cerabral palsy. He is cortically blind, fed via a gastrostomy and suffers with epilepsy. At night he has to have an oxygen concentrator and is attached to an oxygen monitor. He requires frequent suction to prevent him choking. He can`t speak but does answer us by `blinking` his eyes. He is a boy locked in a body so what is my wish?
I wish if only true magic exsisted to get inside his brain, to see what he sees, hear what he hears and make sense of his world. To know when and where it hurts, understand his frustrations and answer his questions, my wish is to make him better but that is impossible.
SO WHAT TO DO:
Love him unconditionally, care for him, survive!
We are both medically trained Alex was our first son, his birth change everything. My job ended, I could no longer carry on as a nurse, caring for others because my son was to be my job. My husband, a Doctor, had to re-think his future. He needed to be a `dad`, a husband, a carer too. He had always wanted to be a surgeon but that became impossible we needed a solid base for us to allow us to access all we needed for Alex so he re-trained and became a G.P. We consistantly found a two tier system in place. We had money so were told get on with it buy what you need for your son yourself, others with less than us were told to wait, wait on lists for what was avaliable. Oh and be grateful for what you get!
We got on with it, we stopped asking, we did what we could for our son because we had no choice. We had no help with care for over thirteen years.
It is wrong, the whole system is wrong, i lost my job, became a full time carer 24/7 for a pittyfull sum of hush-hush money from the government, statutory services are under funded, under staffed and ill informed, I note David Cameron gets care for his son I wonder if that is provided by the state, he who shouts loudest!! To ALL parents and carers, keep doing what you do because you do it best but lets continue to campaign for a better future, I hate being patronised, being told we do so well, we have no choice. We are lucky we have friends and family but most of all we have each other. I see so much of Alex in Noah, I envy his mum as she can still cuddle him, he will grow, get heavier, the cuddles will become no more so she will have to find another way of getting cuddles and being close. Her fight for his rights will go on and on, I wish her and all her family all the love and luck in the world, they will need it!


I am a single mum, I have 4 children.One of my son's has Downs Syndrome.
I have read the above comments and I thought I had it bad!! My son is 9 years old and attends a special school. He has a severe learning disability and loves to demolish the house.. I have a consant battle with the whole situation every day. It's the constant washing, the cost of replacing bedding, furniture, etc..the list is endless.. My house looks like a war zone!!I usually stay up untill into the small hours getting everything ready for the next day..I am exhausted!!! I also work part time at his school at lunchtime..the pay is low but at least I have a job that is term time and if he is off then I have the day off also(unpaid)..Even though I am having a tough time I LOVE MY SON(and my other 3) I just know I could NOT live without him..!! He drives me to tears most days, but I think he is a blessing in disguise..


I have the privilege of being Noah's head teacher and Claire's piece provided a powerful reminder to me and others like me of the place that we occupy in the lives of such families. Schools have extended school responsibilities these days but environments like ours need to recognise and fulfil even wider obligations to families. We have responsibility for many children who not only have profound learning (or living?) difficulties and parents quite rightly look forward to the day that their child can start school, but have an expectation that we do all the things, and more, that they as parents and carers do. It is hugely important that parents can trust us to fulfil this role, in the context of a happy friendly place that will provide advice as well as listen. I am in awe of the way that parents and carers are able turn their lives upside down to care and love for such children, and will even offer sympathy and support for teachers who are having wobbles and moments of despair.
Noah can be said to be lucky to have been born to such caring, able and honest parents, but in my experience, most parents of children such as Noah find the emotional and physical resources to provide all that is needed. If only they could feel that the Government were a trusted part of the care team too.


Hi I am a 58 year old mother of a 23 year old son who was left disabled after a road accident when he was three. He has made amazing progress and lives a fairly independant life but will never be able to live alone, he has a brain injury which does not allow him to organise much, he cannot cook, clean etc. So he will always be reliant on others for support. My worry at my age is who will be there when I am not able to support him. He still lives at home with me, his chances of meeting someone willing to be with him are limited and I do not want my 25 year old daughter to take my place, she is wonderful and has always been a great support to us but it is not her job to take over from me. My marriage did not survive, as a lot of marriages do not, and the input from my ex husband is so minimal, as to be of no use at all, to me or my son. It is a very isolating and lonely job, although friends are there to talk to there is very little hands on help. I could go on and on but won't, I love my son very much and do as much as I can to improve his quality of life but at the expense of my own life. I have to work, so cannot claim any financial support, even though I am on duty for more hours than you need to be to qualify but I earn too much, £650 a month!!!
Hopefully Claire and Noah's story will bring much needed attention to our difficulties.


Hi Claire,

I'm a mother of twins who are both severily ill, like yourself i feel the goverment don't do enough to support parents who care for their sick children they don't realise the stress we are put under and the constent battle to get help from our local councils or health boards. We have just learned that our social work department are starting to means test families that have children with disabilties that use services for respite etc.., i find this appauling as it has took us 3 years to get a good care package in place and now it seems we might have to start paying for services it is all wrong,my husband works full- time still he would be better of giving up his work does'nt pay you,does the goverment not realise we just want an easier life we want to be able to spend quality time with our sick children while they are with us, without having to fight for everything.

Mrs Fraser Dundee,Scotland


i am sick of banging on and on about the neglect of carers in this country.
i have sent numerous emails to Gordon Brown, David cameron, mps and councillors with no response. I have a severely handicapped dauhter aged 34 who has the mental age of a 18 month old baby. She has epileptic fits daily,is incontinant and doesn't sleep on a regular basis. she cannot feed herself and uses a wheelchair. Bad enough you would think but i am a widow and am sick myself. i have crohns disease, ulcerative colities, osteoporosis and am diabetic. Im also waiting for new knees. IM desperate for things to change but they wont, nobody in government cares.They say they do but they should hang their heads in shame.It makes you ashamed to be British.


our son is 16 yrs old and has severe complex epilepsy learning difficulties social and communication problems slight behavioural issues,and dyslexia and dyspraxia.we always felt in our hearts something was not quite right with sam but it was hard to put our finger on it we were both young and to communicate with medical professionals was not easy.At eighteen months old he had his first seizure they became regular,he was admitted to a childrens ward at the beginning but constantly been told the seizures were febrile convulsions .we learnt to deal and care for him ourselves.He was a child that always needed more care and attention than most children,he has always been hard work.At around 9yrs old he was diagnosed with epilepsy and all the complications have become clearer over the years.I worked fulltime before we had sam but chose to stay at home and care for our children 16 yrs on and i am still at home caring for sam although i would not want anyone else to care for him it is an extremly hard and lonely life.financially we find it hard to make ends meet and the government should realise the benefits for people like us do not evan touch the surface of what we need to give these children everything they deserve.We have fought for sam both medically and through the education system ,people constantly judge us when we are not happy with the way he is been treated especially at the mainstream school he attends i wonder how they would cope if put in our situation .We have become quite a team my husband and i we can now confidantly stand up for sams rights we will not accept second best for him we can asertively address medical profesionals on a regular basis constantly questioning teachers attitudes towards him simply through their ignorance of his needs .He has been taunted and teased bullied to the extent which resulted in us withdrawing him from school .We do wish life was easier complete exhaustion and depression frequently overwhelm us but we will continue for our son. sam is a generally happy young man with a wicked sense of humour if only people would take the time to get to know him.Idont know what the future holds for sam but we firmly believe he will find his place in this mad world one day,and he can then laugh at all the people who have dissed him over the years.Do you not think in this day and age what ever our problems or shape or size we should treat each other equally it totally digusts me the attitudes of some of the british people.We dont want sympathy just acknowledgement.


I am the mother of a 16 year old autistic boy, Life for me is one long struggle,he is constantly in pain,has bouts when i cannot reach him at all however hard i try,he get's frustrated,and sometimes violent,then other days he just cries for hours,but he is my child and I love him. I cannot work and have given up on ever being able to,He self harms and sometimes just screams and rocks backwards and forwards for hours , I am not ashamed to say that I also have felt like ending it for the both of us,I get a meagre carers allowance for doing a 24/7 day a week job,but thats fine I am the person responsible for his welfare I am his mother.
I think of all what I have been through with him but the most demeaning was when he hit 16 a few months ago,I had to take him to the local benefits office (anyone who has a fully grown autistic child will know exactly what a nightmare that is) We cannot afford for me to keep a vehicle so it is public transport,At the interview they asked him (my child) If he still wanted me to be his carer and should I still be granted access to receiving his disability allowance,I have never felt so humiliated,He didnt even understand what they were on about.Meanwhile they had stopped my carers allowance and his disability allowance till this interview had been conducted.
Look at your country MR.Brown what has it become? You have issues here that need addressing before looking at the woes of others from afar.I do not want my child to be looked after by others,I have a modest income from my ex husband via csa I do not claim income support cannot work for obvious reasons.Your carers out here are living well beneath the poverty level,you give me a carers allowance then take it away for community charge,rent mortgage etc:Weed your own back garden first then you can go help the next door neighbour weed theirs.


my husband and I have two asperger sons and we also care for my 87 year old mother in law who has alziemers we are finding it hard to make ends meet we have a 20 year old car and never have holidays not even family ones our electric and gas bills are 200 per month and we cant get any help for my mother in law as it would effect and jepedise the money we do have comming in they could not find us any schools in the area after we pulled our eldest out of school [the school was later closed for sexual and physical abuse ] hes now twenty and we still are educating him and our youngest is 15 and hes been taught at home since year 5 we have not had so much as a pencil from the lea and no help at all we have been messing about in the dark all these years and still are we went down the rd of direct payments for my mother in law but we were told that some of our money would be stopped even if it was for petrol or washing as it would come up as an income and we are already stretched and by the time we had got the paperwork sorted out we were to afraid to go through with it .now with every thing going up and gas and electricity going through the roof things are getting desperate about two or maybe three years ago tony blair said things were going to change for carers and they have for the worse but here and there as now when we hear of carers making there voices heard its just false hope my youngest son was given a blue badge but it ran out in march this year and they would not renew it they said he could walk but if you look at him hes cloustraphobic does not use lifts or escalators public toilets then i always have my mother in law with me she has to walkup or down upto 7 flight of stairs because we have to keep together then my oldest son cannot leave anything alone [buttons ect] but they do not look at the bigger picture our lives are difficult enough with out spending hours and hours filling in reams of forms and seemingly trick questions we and most carers are living on the edge all the time I am 51 and my husband is 61 neither of us are in the best of health when are we going to have a break not from our family so much but from the restrictions imposed upon us by beurocracy yours in hope tina gay Norwich


The recent 'boy in a suitcase' story was so terribly sad but I am surprised we do not hear similar stories more often. I care for my 19 year old daughter who has severe learning difficulties and autism. It is the most difficult and lonely job in the world but I do not complain like others in my situation because most people just do not want to know. The truth is every day there are probably hundreds of mums in this country like Heather Wardle whose sanity finally tips over the edge. Most do not go through with what she did but there are a lot of carers who would desperately like someone to get involved, be a listening ear, get to know their child, anything to make them feel that nobody cares. Even family members do not get involved as you would imagine. They dont like the idea of changing nappies or bathing someone who is not a baby. That is the only reason I can think of. Society has to wake up and realise that WE ARE SUFFERING AND WE ARE HURTING BECAUSE NOBODY SEEMS TO CARE.


Our situation is slightly different but none the less significant. My husband works full-time as a teacher, he regularly has to bring home extra work.
He is my only carer. I have been ill for 8 years. I have had four major abdominal surgeries, two of which were life-saving. I have no bladder, no large bowel (replaced by bags) and a complex feeding tube. I have medication which must be sorted, crushed and mixed with sterile water before administration - this occurs 3 times a day. My husband drives home from work specifically to give me my lunchtime dose, often running in and out the door missing his own lunchbreak. Evenings are spent preparing feeding regimes, empting bags of 'waste' cleaning-up and renewing supplies. He comforts me and puts me to bed. Not to mention the routine of everyday life, fixing appointments and attending hospital. My care I'm sorry to say has often impacted on my son's life. He is a lovely but a needy and demanding 8 year old. My husband is almost a broken man juggling all the balls. No help from social services, no payment from the goverment.
And what about me?. I'm 40, I'm physically restricted, I spend my days alone with no other family or social contact. That's why I often feel I don't want to be here anymore. (I have attempted suicide in the past) I have no input anywhere of any importance, basically I'm a burden and will continue to be for the forseeable future. I have to ask who really cares about these forgotten lives?


I, too saw the news footage on this story about Claire saying she only received 200 pounds/month care allowance.Actually it's only about £41/week, and she neglected to say she has a top up of about 300 pounds/week from the government for her disabled child.


Hi, I have been caring for my lovely daughter Lyndsey for 34 years. She has severe learning difficulties and has the mental age of an 18 month old baby. She is epileptic and has fits every day. She once had 150 in 2 days.Sometimes she goes 9 nights in a row without any sleep. I am disabled myself now. I have crohns disease, ulcerative colities, i am diabetic and have osteoporosis. My knees are so painful that i can hardly walk and need new knees.
Five years ago i lost my beloved husband Keith to cancer so im now a widow. He was my second husband and was much loved by us both. He was a great help to me and when he had cancer i had a burst bowel and almost died myself. my doctors allowed me home after 4 months in hospital because his doctors sent him home to die. He lived for three and a half weeks then i had to go back in hostpital to have half my bowel removed.
Since then (five years) we are on our own. I considered taking our lives when i was back home. I felt such a burdon as my mom was looking after us both and shes in her seventies. It was only when i relized how much pain my family would go through that pulled me from the brink.
Our government have let us carers down time and time again. I hate this country and am ashamed to call myself british. We save the government billions but no one cares. I LOOK FORWARD TO THE DAY I'LL BE WITH MY BELOVED KEITH.


I am a mum of 2 children, aged 2 and 3. My eldest daughter was born healthy and was diagnosed with Leukaemia aged 21 months. Within 2 months of starting her chemotherapy treatment she developed bacterial meninigtas, which nearly took her life and has left her brain damaged, unable to walk, sit up, epileptic, blind and with limited speech. She has a lot of medication throughtout the day, is often very restless at night and is fed through a tube in her nose. We have at least 4 appointments a week, preparing for which is a military operation epecially with a toddler in-tow. We find ourselves constantly fghting for vital things such as wheelchairs, speacialsed equipment and statementing for specialised schooling. I agree that the amount of carers allowance is simply not good enough. Family's like ours often have to buy houses big enough to accomodate all the equipment, downstairs bedrooms, buy cars big enough to be adapted for wheelchairs, purchase equipment etc and its definately a struggle. Despite all her complications she is a happy and loving little girl. We are very fornuate to be cared for by an excellent community nursing team and receive respite 2 nights a week. Sometimes I feel that people think I have it easy not having to go out to work. Instead my job is inside these four walls and 24 hours a day.


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