Did anyone see Panorama?

[jasper]

It featured two families struggling to care for their profoundly handicapped daughters.
Both children require constant care and attention and the families have little or no help from social services.

It was a really moving, and disturbing programme, the kind that makes you feel ashamed of ever complaining about some trivial problem you might have with your own (healthy) child.

One of the mothers was a single mum, whose partner had left her when their daughter was very young because he could not cope with a less than perfect child.

I saw it Jasper, made a point of watching it as I have a son with cp and was interested to see what other local authorities were like compared to the ones we have experienced. Was amazed to see that I actually knew one of the families many years ago.The myersons used to live a few streets away from me in shepherds bush in 1992. We met while both our daughters were in hospital, and emmy was about a year or so old. My daughter was about 2 months old at the time, and doctors were unsure about what the future held for her too, as she had heart problems and hydrocephalus, and was thought at one point to be deaf and blind. I used to go round and have tea with her and was struck by how positive and strong she was then. At the time I knew her she and her husband were moving to somerset, hoping to find a good quality of life for emmy as they didn't expect her to live much longer. I guess they decided to move to Oxfordshire instead.

I had great sympathy with them today, and the other woman too. I was left with confirmation of my belief that a lot of children are left undiagnosed or unrecognised because the relevent authorites then have to fund their needs, and they don't want to or can't spend the money necessary. This is exactly why I think my son was not being confirmed as having cp where we used to live, and as a consequence of that his physiotherapist now says he has suffered as a result of getting no treatment.

It leaves me with a very nasty taste in my mouth to think that people are going without help and treatments because recognition of a problem means spending money they can't or won't make available.

And tbh I got the impression that the myersons would have been a lot more accepting of council decisions if they had been told the truth of why emmy was being refused help to attend the school in question (i.e the council didn't have enough money to fund it) rather than covering it up in a lot of old spiel saying it was not suitable for her needs. If it happened to me it would make me angry still, but at least I could understand why.

A very frustrating programme, with some very strong families in it.

lou33 that was what I thought of all the council stuff - why did they not come clean and say they could not afford it?
I was really impressed by the Meyersons. They struck me as incredibly honest people. I was not sure what the programme makers were getting at by continually showing long shots of their big lovely house.
As for the other mother, I could have wept for her, not only having her disabled daughter to cope with but what looked like sullen and uncooperative teenagers as well.
How is your son? Do you get much support? Hope you don't mind me asking.

Don't mind you asking at all Jasper. He's doing really well now we have moved counties. Basically we were in a similar situation with regards to the lack of services we received, except we didn't realise until we moved just how lacking it had been! The only reason we got a confirmed diagnosis for ds was because it became obvious to me and dh that he had cp, and during a telephone conversation I asked his consultant if she thought it was cp, and if not she had to give me her reasons for not thinking that. It ended up with her admitting he did have it, although she said the hospital preferred to use global developmental delay so not to scare parents. Totally different things though imo. Gdd infers things could improve, whereas cp cannot do that.

Anyway both myself and dh agree that the only reason we got the diagnosis when we did was because the consultant knew we were moving and therefore someone else would be paying for the services he needs. If something is recognised it has to be dealt with doesn't it, so it makes economic sense not to admit to anything that may cost a bit to deal with.

But now we have moved the difference is amazing, a real example of postcode lottery. Ds has weekly hydrotherapy and weekly physiotherapy, which also includes home visits if I need it. He has a paediatrician here and a neurologist in london. He is on the local disability register, has been seen by social services for adapted equipment, and has a very on the ball hv. We didn't have any of this before, and in fact his physio here is very cross because of the lack of care he received, saying that he should have been having physiotherapy from the age of 6 months every week, not once a month from the age of 18 months.

He can commando crawl now, and roll over, and has learned how to pull himself onto all fours then "w" sit, which is not very good for his hips, but at least he isn't looking at the world from the floor all the time! We have an adapted highchair for him now, and a standing frame that he has to go in daily. To go with the frame he is being made a table to fit his height etc, by a company called remap, who are a group of retired engineers making items for disabled children that cannot be found elsewhere. An amazing service, it isn't costing us anything either, although I would have been happy to contribute. Also we are waiting for a bathing seat for him so he can have a bath without one of us in with him holding on!

His progress thanks to the brilliant physiotherapist we have has been great, but it does make me angry if I think about how he was left with nothing where we lived before. I wonder how much he could have been doing now if he had had treatment that bit earlier.

The Myersons were a very strong family when I knew them, although they just had emmy then. I remember when feeling very low about the future of my own daughter drawing strength from the way they coped. Fortunately my daughter overcame most of her problems and is pretty much ok now, but I feel for them greatly,sitting there thinking there but for the grace of god....

I felt extremely angry on behalf of the other woman though. She was obviously very depressed and had noone to share her worries with, which at least tussy and david had. She seemed to have had a hard enough life as it was without having to battle faceless suits to get virtually nothing back in return. The thing is that what she and others should be doing is fighting tooth and nail to get what they want, but the reality is that life is so draining just dealing with the daily routine of a disabled child (and having to look after any other children you have too)that you don't have the energy to fight. It all goes into just carrying on every day. I think that is what the councils rather bank on tbh, that most will just accept their fate and disappear.

I must say I thought it rather ironic that after listening to how the coucil was cutting back by 250,000 next financial year, the next panorama is about our defence sysytem. How many children could government help with the cost of only one warhead? Doesn't make sense really to me.

P.S Sorry that was a bit long!

Do you think we were the only ones to watch it last night btw?

I watched it and was absolutely disgusted with the treatment both families had received, I just could not believe that they seemed to be being made to suffer for trying to have their children at home in the first place.
Lou33 - out of interest which area did you move from and to?

I watched it too, and was deeply moved by it, so did DH and he normally avoids programmes like this.
DH and I gave thanks for the two healthy children we have,
I cannot believe how strong the Myersons were and my heart ached for them both and the other lady as she had no other family support.

I too, felt it was very wrong of the camera to keep homing in on the Myersons house.

It reminded me of the article in the Telegraph during the week about Dutch midwives. It said that aany child that is born woth a disability is automatically cared for by the state and all provision is funded and parents receive unquestionned support.

I may be wrong, but I felt they were trying to make a slight correlation between the fact that nearly all babies are born at home and so they have less babies who are born with problems. It seemed to say those born in hospital have the most problems. I need to find the article and read it again.

I thought the Oxfordshire "offer" to the Myersons to take Emmy into care was offensive in the extreme. I felt for both families. I know that social services around here is at crisis point. One of the support groups I attend had a visit from a retiring social worker. She told us that parents have to fight for respite services etc otherwise nothing will happen- it has to come from the parents. The trouble is as a parent of a disabled child you are already dealing with a lot of problems every day- and usually fighting for basic services for your child- to then take on a fight for respite (which if you do get it will probably be unreliable) is just too much. The government can spend three million advertising mmr, but won't spend 100 000 providing a suitable placement for emmy- disgusting.

I don't now about the Myerson's being strong- I think you do what you have to. I thought that quite understandably Mrs Myerson looked like she was at breaking point. I hope they get some real, and sensible help soon.

Jaybee I moved from Luton which has it's own unitary body inside Bedfordshire, to near Godalming in Surrey. Unfortunately even though we are in an area where so far the services have been excellent, there will come a time when something will have to be fought for. It's almost as if we are being told that our disabled children don't have a voice or deserve the same as everyone else, because they are children who may not grow up to contribute back to society all they have taken out. Unfair, but money seems to be the overriding factor in decisions nowadays.

Alibubbles I would be really interested to read that article if you can find an online link.

lou that's exactly how I feel (DS1 is autistic). So far everything has been a battle!

It can get so wearing can't it?

oh lou- do you know I find the constant battling for services far more wearing than actually dealing with my child. And these people are meant to be helping!

I know exactly what you mean. Although as I say so far the service here has been great, I have had to fight a few battles in my time. I think it must be drummed into all healthcare providers about the cost of everything nowadays, so the first thing they look at is the cost of something rather than if it is beneficial to that person. Of course I doubt you could get anyone to say that officially, instead they wrap it up in lots of new made up words to try and make themselves sound caring.

And if you have a complaint about a particular service, it's amazing how many other people find out and close ranks. We tried suing a health authority years ago because of problems my oldest child was born with, and the amount of helath professionals who knew about it, when it didn't concern them was amazing. And almost to a man they tried to bring it into the appointment and tell us how wrong we were. It's like dealing with a bunch of freemasons!