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If you were concerned or affected by Panorama: Survivors then please do e-mail us your thoughts.

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Everyone who watched tonight's programme must have been moved by the desperate plight of the families featured. I certainly was. Building awareness of the issues is a positive step towards securing a better future for the disabled and their carers. The BBC and the production team concerned may be proud of what they've achieved in broadcasting this programme. It's motivated me to do something to help - my wife's been nursing such children at Lord Mayor Treloar College for 12 years and it's about time I did something positive as well. I'll get in touch with Mencap and start from there. Anyone else up for the challenge?
Michael Dover, England

As we have been struggling through very trying times with our daughter (who has cerebral palsy and epilepsy) for many years, I watched this programme with interest, and it confirmed my misgivings about finances. We could be termed "lucky", in that we do get some respite, but I cannot envisage a future continuing with this level of care. Perhaps something will be done when I break down (or drop dead with exhaustion). If adult services are worse, what hope is there?
Kathy, U.K.

As the parent of a profoundly handicapped child, my little "Emmy" did not reach her 5th birthday. I miss her sorely still, and whilst your story held few surprises for me it does remind me of the desperately unhappy truth that we were, in many ways, lucky to lose her before she grew to be as Emmy is. That truth brings great unhappiness. To have wished however fleetingly for the death of a child and then to see that wish fulfilled is a truly awful thing. If ever it would be useful to you to talk to someone about the consequences of that situation I am here. The one thing I ask is this. Prematurely old, carrying an indescribable weight of sadness, there is little I can do of consequence to help the subjects of your programme. Can you send them my love, and my thoughts. They can count for little, but they are there.
Richard M Thompson, England

Disabled people have feelings too and deserve to be treated with dignity and not made to feel guilty

Vicki Mather
Excellent programme on caring for the disabled. As mother of two disabled young adults I believe that we are all punished for our children's disabilities, as are they. Respite care should be statutory, and day care should be appropriate. My daughter, who is brain-damaged and partially sighted, is at a day centre with disturbed people who hit her on the head and pull her hair, despite the best efforts of poorly paid staff. You could do a mind bog. prog on the Dickensian conditions in some of these day care centres in 21st century Britain. As your programme said, lives are saved and children survive nowadays, when previously they didn't, but there seems to have been no effort to provide the help and care for the whole family which is so needed, as a result of this preservation of damaged life. In human rights terms, we carers have none. Many carers go for years without a whole day's respite.
Carolyn Addison, Devon, U.K.

The government seem to have got targets for just about everything, yet they ignore the disabled. How typical! I have the utmost empathy with the families in the programme. I am disabled and throughout my life have felt and been made to feel so guilty about "being a burden on my family who had little or no outside help", yet at no time throughout the programme or throughout my life have the wishes of the disabled person been discussed. Of course the government should give more resources to both pre and post 16 care, but those resources should be used with the wellbeing of both the parents AND the disabled person being considered together. Disabled people have feelings too and deserve to be treated with dignity and not made to feel guilty about something that is rarely anyone's fault.
Vicki Mather, UK

THANK YOU so much. I have a two-year-old boy with serious multiple disabilities and I am currently battling for some respite! I live in Northamptonshire and I think it shouldn't even get one star. So far they have been very infuriating with their response, lack of commitment, failure to follow standard procedures etc. We need our children's plight publicising or we will be forgotten and ignored.
Mr and Mrs baker, UK

I am ashamed to see that "our" government is ignoring such issues as those raised in Panorama last night. Stop wasting billions of pounds on war, asylum cases and foreign aid and concentrate on welfare issues. These are our people, look after them!
Jamie Shawyer, UK

Last night's programme was totally overwhelming. What is it with the Social Services in this country? The only time they are prepared to do something is when a child has actually been physically abused - by which time it is far too late. My heart really goes out to the parents of Aja and Emmy. A gold medal wouldn't even compensate them for their overwhelming love, dedication and compassion for their children.
Tony Stamper, UK

A very sad situation for both families. Surely enough money could be found to fully support the relatively few families compared with the total UK population? What I cannot understand is why it costs £100,000 for one child to be looked after in the special school. This sum could provide three fulltime staff at £25,000 each with £25,000 for overheads, food etc. Surely this sum must be excessive.
C.P. King, UK

Every extra hour we get comes at a cost to another child

Martin, Wales

Watched "Survivors¿ last night and it really did "open my eyes". Never realised that life could be so bad for families with a disabled child. The purpose of this e-mail is to ask what may seem a naive and weak comment but I have to start somewhere, so here goes. If a very determined effort was made to raise private funding to really help these UK families then surely that would be a worthwhile thing to do. I would be absolutely amazed if someone, having watched last nights Panorama programme, could resist putting their hands in the pockets and bringing out some money to assist. The approach would be on a local basis and targeted towards private and public companies. The local councils are obviously in a very difficult - dare I say impossible situation. I would really like to spend as much time as possible organising such a initiative. Could I therefore use a video tape of your programme to generate interest and raise cash? Look forward to your comments.
Jonathan Halse, England

As someone who is also fighting for more help with their severely disabled child I am aware that every extra hour we get comes at a cost to another child whose carers may be less articulate or forceful than me. Well done Panorama - a moving tribute to those who care.
Martin, Wales

I saw the programme on disabled children and their families. I have also studied the profiles of our three main political parties. I am disgusted that none of them has us in their sights. We are growing in number but no-one wants our votes, thoughts or involvement as we represent a financial burden. Our special schools face closure to save money and we have little or no help from anyone. Yet the government and the other parties are always talking about inclusion into society and how it is their goal. It is only their goal if it saves money, it is not their goal if it means thinking of our needs. Even simple things like getting out and about is not thought about. (Disabled toilets are few and far between. Shopping is a nightmare and travelling is not easy!) Holidays... what are they?
Mrs S Rowland, Essex

Congratulations on your programme last night. My granddaughter is disabled with a single-parent mum, and it breaks my heart to see the struggles that most people are unaware of. Poignantly presented and accurate, well done. Thank you.
Diane Knight, Luton, Beds. England

I care for my husband and have not had a break for 5 years. He does not like going out, so I can not go out either. It is very tiring and I miss out seeing my grandchildren. I am 59 and feel my life has finished.
Valerie Knights, UK

I set up and was the manager of a social services respite care centre for nearly 15 years. We offered top quality care for children with multiple disabilities which gave their families the kind of relief that your programme tonight showed is still needed. The present funding policy is an absolute shambles.
Eleanor Reakes, UK

I have chaired the charity Parity For Disability that provides appropriate services for young people with profound and multiple disabilities. We meet continued problems with the statutory agencies in providing these services. As many parents will testify "if you think you have problems when you have disabled children, wait until they become adults, then everything stops".
Paul Roper, UK

My youngest sister was born with spina bifida in 1968. My parents looked after her until Sara died, just 2 months ago, aged 34. I saw my parents struggle, uncomplainingly for all that time with hardly any help, into their late 70's. Please do not let this story go as there are so many people in desperate need of help.
Penny Humm, England

It seems there are unlimited resources to preserve life, with no thought to the quality of that life or the life of the caring family. Then the resources disappear, leaving the family to manage alone. Each family will have different needs in how they cope with disability and unless those needs are met there is a high probability that family will breakdown. The government should do far more.
John Whillans, U.K.

Our son was recently diagnosed with Pallister-Killian Syndrome which is very rare. We have been told he will not survive past the age of 10. North Tyneside Children¿s Services told us to take our child home, and 'just treat him like a normal child and start acting like parents'. All we want to say to other parents is, never give up the fight, no matter how futile it may seem. They will relent in the end.
Anne-Marie Parkinson, England

We might as well live in a third world country with the level of care the government is offering the children with disabilities. I think the government should address these needs instead of spending millions going to war.
Nicola Pennington, UK

The money which should be used for things like social care seems destined to be used for a disastrous war with Iraq, which most people in the UK do not want. The results of a war will be increased social care needs due to maimed soldiers. Will they find the cash to deal with the social care needs of such people?
Yusuf Smith, UK

I thought the situation was bad in Wales but I really feel for the families featured in Survivors. All I can suggest is for them to get the help of a solicitor to fight for their children¿s' rights. I had to do this for my son who is disabled.
Sue Davies, Wales

I have a daughter with an illness and was given one hour respite care a week. Now she goes to a special needs nursery so the care was withdrawn. My daughters illness can involve me being up through the night several times a night and she needs to be constantly watched through the day. The government finds money for lots of unnecessary things. Why can it not put the money to better use? Look at all the services available to asylum seekers.
Carol Williams, UK

It is completely outrageous that these families are being denied the support they need from their local social services. How many more "meetings" before Oxfordshire County Council is shamed into action? Well done Sarah Barclay and the Panorama team for highlighting this story.
Ray & Angela Tostevin, England

I spent years battling the system to get help with my child who has complex disabilities. His problems are not as profound as Aja's and Emmy's but are as difficult in their own way. I gave up in the end and not only looked after him myself but schooled him myself also. What will happen when we die? I refuse to think about it, because the world is not going to care about my son.
Grace Deakin, U.K.

Thank you for your programme tonight as the parents of a severely autistic 13 year-old with epilepsy we are currently fighting Cardiff Council for a 24 hour educational placement in the school he attends. We have had a heart breaking six months but we no longer feel we are on our own.
Beverly Penry-Williams, Wales

As a young woman with physical disabilities caused by cerebral palsy, I am one of the lucky ones. My parents fought for the care I needed and eventually succeeded. Several years down the line I am half way through a degree. I was shocked by the ignorance of local authorities.
Jackie, Scotland

Rarely have I been moved enough by a programme to sit and cry . The families coping with these problems deserve help regardless of their financial position. I am sure if our government was not so desperately keen to provide for all and sundry who turn up on our shores, legally, or otherwise, there would be more than enough funds to make a huge difference to the lives of the people who so desperately need it.
Lynda Flello,

The programme concentrates on children - birth to 16 years - what happens when they are adults? The support offered then is even more abysmal.
Judith Barrows, England

It is great to see Panorama giving attention to the care takers of disabled children. It is about time. Let us here more on this subject.
Mary Masi, U.S.

Please do not blame the social work departments of local authorities. The government does not fund them enough. Social work staff are given no support or backing by their managers and are given too big a caseload. I have special needs as well and all through my childhood I did not get support either. I have epilepsy.
Morag, UK

It is not just families with children who are in this situation. My wife suffered a massive brain haemorrhage 14 months ago and now requires 24 hour nursing level care. I have had to give up work and have found there seems to be little or no help available. Although a care plan was put together before my wife was released from hospital it was quickly abandoned and we do not even see a District Nurse. Social Services need to keep pace with the improvements in health care /medicine and not lag 30 years behind.
Bob McKennan, England

As the mother of a son with learning difficulties it made me weep to see this programme. I can understand perfectly how those parents feel. For over 30 years I had no help. And my two younger children suffered. Unless you have had a child like this you cannot understand the physical and mental anguish parents and siblings suffer. We have been fortunate that in our area eventually we got the help we needed, but it took 35 years.
Alba, Scotland

Panorama asks why the families of disabled children appear to have been forgotten



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