By Steve Bennedik, Sky News Networked Editor

It's a story which obviously has real impact and resonance. It's prompted a huge, overwhelmingly sympathetic response from our readers. And it sheds light on a flaw in our welfare state, the burden of responsibility put on families bringing up severely disabled children.

Claire Bates is a colleague and friend of those working in the new media section of Sky News. A pioneer of online journalism, she has always had a thoroughly professional approach to her work. And somehow she's managed to juggle it with bringing up three children, one of them five-year-old Noah, who has cerebral palsy.

Now she has written a powerful and totally honest description of what it's been like to look after her son, and how she once considered ending his suffering. If you haven't read the article, I urge you to do so. And also the hundreds of responses, many from readers who are in similar situations, caring for loved ones with limited support apart from their extended family.

It's strange how we need these personalised accounts to appreciate and react to what is clearly a widespread problem.

Journalists usually prefer to report the news than be at the centre of it. But in this case Claire has looked deep within for the story, and her brave words have brought more than just a lump to our throats, and tears to our eyes.

They have focussed on what many of us, including successive Governments, already know but I suggest prefer to keep abstract because it's more expedient that way. In these cases, care and support relies to a great extent on the uncomplaining, total dedication of mothers and fathers whose love for their children is unconditional.

I'd like to thank Claire for writing such an honest piece and salute her and other parents, working so hard to bring up their disabled children.

Click here for Claire's moving article

Comments

[Trisha Noble (bskyb) 9 May 2008 15:02:21]

I have a husband with cerebal palsy, mild yes and does not affect him as it does your son. I find it hard to cope myself but since reading your story i am asamed of myself.
I thought i had it bad, working and caring for my husband, but hear you are doing the same but for yoyur son......i am mother myself to beautiful 2 year old boy and cant imangine him suffer like is father or worse.

You are an isprariation to me, and thanyou for telling your story.

[sal notts 2 May 2008 14:12:16]

more should be done to help cares,im a carer of two autistic boys.i cant begin to tell you how hard it is to have a child that i cant communicate with,even the smallest of words,which they dont understand.this goverment has no regards for us carers.i cant tell how tired and stressful every day 24hours of it are.ive found that the dont pay carers allowance for a second child who has dissabilities,so im basically doind two jobs for the price of one rubbish payed job of £50.55 a week.we deserve more breaks and financal help,im sacraficing my own career to be at home with my boys,becase im too tirerd to take anythin else on.

[Joan Skingsley. Cramlington Northumberland 2 May 2008 08:49:01]

I have just had to give up work to look after my daughter who has Downs syndrome with heart lung and kidney defects,and the financial pressure is emmense the heating bills alone are a worry, the elderly get a heating allowance and while Idont begrudge them it I do think it should also be given to the chronicly ill.the goverment need to walk aweek in a carers shoes I bet things would be made avalible then

[CPSQ 29 Apr 2008 05:52:20]

Many mothers & fathers (those that have attended the birth) suffer from PTSD - Post Traumatic Stress Disorder. Thoughts of suicide, homicide and euthanasia are common and part of the diagnostic criteria for PTSD. Its important that people get counselling early on to minimise the risk and ongoing issues.
Claim on income protection insurance if covered.

See also post from CPSQ after article.

[Mrs R Mahmood 28 Apr 2008 17:21:29]

Like everyone else who has sent in their story we too have struggled silently caring for our disabled son for the last 17 years and as all those in our position know you really have to beg to get any kind of support or recognition of how difficult our job is.

The sleepless nights and help with all aspects of self care are done selflessly and that's why we are ignored because what we do we do it for those we love.

So if we don't get help or recognition we just get on with caring and the powers that be know that, so, no the system is not going to change, we might get a patronising pat on the back for a job well done but in a few days time this story will be old news, we'll be forgotten and we'll carry on doing our jobs in silence.

[mark 28 Apr 2008 14:20:17]

I have watched claire and her family on the television over this weekend and know excatly how she is feeling and all the thoughts that she had, our son was the same but what made it all worthwhile was his smile and laughter.He to had to have a tube to be fed and he had upto 80 fits a day and numeruous opperations and trips in and out of hospital. He sadly passed away 5 years ago aged 12. but i would not have been without him and there is not a day that goes by i dont think of him. I would like to say that dont lose each other in all the caring you do as sadly myself and my wife had grown apart while andrew got worse and sadly we split afterwards. while the children are alive with servere disabilities you have to fight for everything for them and it is hard, but once they are gone it is just as hard as everything stops and all the support that you have had goes as well. I a just recoving from delayed grief and it has been nearly 5 years. good luck to all your family and for bringing this to the news and helping people understand how hard it is looking after a child with server disabilities

[kim , enfield 28 Apr 2008 13:42:58]

I read Claire's story and thought i would share mine. My son is 18 and has a rare genetic condition. He is incontinent, cannot feed himself, clean himself and needs aid to walk but uses a wheelchair also, He is also a gentle giant at over 6 foot with huge size 14 feet. He needs 24hr care. Unfortunately my husband is now disabled with ankylosing spondylitis, colitis and iritis and is quite dependent on me. I have coped under quite a lot of pressure with the love and support of my mum and mother-in-law both pensioners. Without their support i'm sure i would have gone under by now. I love my son so much and my husband and do whatever i can for them. My life has to happen as and when it can. As my son is now 18 he is officially an adult even though he is a baby in an adults guise. Getting services has always been an uphill struggle(just not enough!) but adults services are just dire. Day placements closing and places i have visited should be in victorian dramas, JUST AWFUL!. there are a couple of good ones but what a surprise these have shut their doors as everyone wants them! What hope for the future for my son if day centres are shutting and care in the community (doing all the care yourself!) is all that is being offered it is just utter dispair. The government needs to really address financial packages for carers and put in place well run, clean, friendly, supportive placements so the tradegy that has recently happened does not happen again.

[irene conroy 28 Apr 2008 09:20:17]

Its about time someone spoke up for family carers.I have cared for my husband, a tetraplegic for 40 years.I to received care allowance,but it stopped when i started working,although i was still on call 24/7.
We are both 60 this year so the care allowance stops.Iwent to see my MP,but nothing came of it.

[dorothy higgins faversham 28 Apr 2008 01:16:37]

In terms of the general population a carer is much more likly to be a single parent living in social housing away from family and friends.There is a huge problem with social isolation and poverty and dealing with a disabled child.Relationships break
down very quicky.There is a huge fear of social services and that if you ask for help the child will be taken away.There is a big difference in parts of the country as to what help is available.Last year I set up Family activities for the disabled in Swale.We have 104 families and are hoping to go on a nice coach trip this Summer.As we always use coaches with a hoist it is expensive so we are doing lots of fundraising.

[Yvonne Cox 27 Apr 2008 22:13:24]

I did not have the opportunity to read Claire`s story but I think I have an idea of the content.I have a son of 33yrs who has Downes Syndrome,I was 18 yrs old when I had him and with other issues going on my marriage ended,I had thoughts of taking mine and my Son`s life following this and like Claire thank god I didn`t.I have never received a penny in carers allowance as I went to work,I had no alternative as a single parent.The government need to remember that parents of children/adults with special needs save them so much money by looking after them at home and we do it, because we LOVE THEM.I wish Claire and her family the very best of wishes
and to remember they are never alone with their thoughts.

[Greta Young 27 Apr 2008 21:09:44]

I was a carer until my son died eighteen months ago. It is so good that this article is highlighting the burden of caring. However do not let us shed crocodile tears...... better to actually do something! My own son was very ill and frail, and I tried my very best to get help. We did not get help, and since then I have sought information about the response, or lack of it, and this has been refused!

[sonya Leeds 27 Apr 2008 20:13:15]

I think that Claire is doing an amazing job,which is not been made any easier by all the red tape that is involved in getting carers allowance and other help. I speak from personnel experience the help that is available is practically non exsistence and carers are left to fend for themselves most of the time. I get 30 days a year respite which is only 2 and a half days a month. when who you care for need 100% attention other siblings suffer and just have to adapt to it and thats not fair on them. the system needs simplifying and more help available for carers.

[Sandy Gray 27 Apr 2008 20:00:13]

Dear Claire & family
(and the sky news team),

Our daughter suffered a brain trauma, aged a year old. I was 21 at the time, a single, abandoned parent. We empathise and can identify with your plight.

Your message is reaching the global community, as we now live in Hong Kong. The situation needs to be turned around asap here too. In HK whole families often take their own lives together. We have very meager social services and the highest suicide rate in the world.

However we’re not all bad. The HK Jockey Club gives all their profits back to the community. I don’t think that there is anything comparable in the UK. It’s a shame, as it’s a brilliant system, as it tackles two problems at once, it regulates gambling and makes it a profitable for the community. It’s worth checking out to see if something similar can be done along similar lines in the UK.

When my new hubby and I went to live in the NE with our daughter, we became a respite care
(specialist foster care) family with ' Dr Barnardos, Durham Shared Care.' We got to support and become the extended network to four other families in need. We also became part of the area network of like-minded families who felt that it was not sufficient to look the other way, that their consciences felt more comfy giving a bit back now and then.

We have the most wonderful memories of being part of the "Care Bear" team. All of the project social workers were absolutely brilliant and so were the other families. Some of them were well off and quite posh, some not, we all mucked in together. We had such a laugh! There was a great sense of camaraderie.

When the care children came to stay with us, we took to do things that broadened their horizons (and ours too). We not only had tones of fun but we became better people as a result. We learned to be grateful for what we had while the parents had a well-deserved rest. It was a win-win situation, all round and run on a shoestring budget.

Warm regards,
The Gray family

[Khalid 25 Apr 2008 11:08:38]

Sir
What a powerful, emotive and above all an honest account surrounding the days of a mother and no doubt an excellent friend to many.
Reading her story thus far, her determination throughout the many a chilling lifes encounter has no doubt tested her nerve as well as mental agility, suffice to say no matter what a mothers love never dies, no matter what condition the child may be in.
The fact that Noah has been given the best care and attention to date, is no doubt evident of the qualities Claire has and I can only but wish the family happiness and the strength to enjoy many a [Donna Summers] as one thing for sure, [She Works Hard For The Money].
Take Care and all the very best!

[Michael Robinson 25 Apr 2008 06:29:31]

Claire has done a wonderful job in bringing to attention the heartache of the situation so many find themselves. i was almost in tears when I read it and it reminded me of a charity i know of and have contributed to in the past. It offers respoite care enabling people like Claire to have a holiday with the child well looked after.

I shall be making another donation in Claire and Noahs honour.

Well done Claire for writing it so succinctly and well, well done Sky for giving what was not a news story such prominence, and well done Noah, you may not know it but you may have just helped things in this country change for the better.