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Benefits U-turn could spare families with Disabled Children - Page 2 - Carers UK Forum

Benefits U-turn could spare families with Disabled Children

Discuss news stories and political issues that affect carers.
I agree Charles,although did not recognise it before you pointed it out. My view now is far narrower than it was three years ago. Diabetes is everything in our life, nothing else actually matters.To keep Ben alive and well every day is a trial.It is made more difficult by him not understanding his own needs.Last night he ate all of his emergency glucose tablets just because he fancied something to eat,and then looked quite innocently at me when his blood sugar went up to 22,saying he did not know what caused it!
The responsibility of the diabetes is like a lead weight sitting on my chest.If we get it wrong, we know what will happen.If we do not monitor Ben well enough,then we know what will happen.(and I think my husband feels it more than me,as he believes he passed the diabetes to both boys,and he hides a lot of guilt).
Charles
We don't have NHS Continuing Care here in Scotland. As far as the NHS is concerned Roberts needs are social not healthcare related.

I don't know what you mean regarding the respect rules - as far as I am aware I did not violate any. I did not swear or call anyone names.

It is disrespectful for someone to suggest that life for some is bad because those persons are not "optimistic" or "positive" or to suggest that the reason things are going wrong is because people are preparing for the worst.

Some people should remember that caring sitations are not as easy for others as they are for them and that not all get a fantastic level of support (which is nothing to do with optimism, positivity or planning - its the way it is end of story).

Eun
Eun, as for the continuing care issue, try this: http://www.sehd.scot.nhs.uk/mels/cel2008_06.pdf

The respect rule is not just about name calling or swearing, but since you ask here are a few examples]are you for real?[/quote]
But I suppose according to you we should just be "optimistic" and "positive" and not bother preparing for the worst and it will all go away will it. You have no idea do you?
no amount of positive thinking and foolish optimism will change that fact.
I feel that they are at the very least close to the border of the respect rules.

Disagreements are not the issue, and Scally's post may have felt insensitive to you but I do not believe it was intended to be disrespectful. Scally did not directly suggest that you were unrealistic in your views, that things would all go away, or that you have "no idea." He suggested that taking a positive stance can help. Scally's experiences are very different from yours and he can only speak from that experience, as you can only speak from yours. It doesn't mean either of you are wrong. It just means that your experiences and opinions of the system are different.

Personally I don't think a positive view will change your situation but I do believe that there are arguments you can use for a better level of service. If you like, I'm being over-optimistic too, but if someone requires oxygen it's a health need and there is NHS Continuing Care in Scotland: the totality of your son's needs may be enough to tip the scales in your favour. It's worth looking into.
Charles Robert does not require oxygen. He uses a bi pap machine which takes in the air in the room under positive pressure - helps him to breathe without struggling so hard.

I still don't see what was so disrespectful about what I said but I guess we will just have to disagree on that one.

Will look into the website you have provided thanks for that - will let you know how it goes.

All the best

Eun
Eun, I do hope you can get somewhere with the continuing care issue.

I know we battled over this issue regarding my late sister in law who was starved of oxygen during an operation and suffered strokes and brain damage as a result. The day she passed away the NHS and SS were still fighting and debating the point as to who should pay for what. After she died her son got a bill for everything during her time in residential unit specialising in brain injured clients. He was at his witz end until auld auntie here got on her high horse and told them to continue to argue because at the end of the day the debt died with her. It took almost two years and three solicitors to get it sorted.

I often think there are a lot of bits of beaurocricy which could be made simpler, but sadly we don`t live in a simple world.

Take care
Meg
Charles Robert does not require oxygen. He uses a bi pap machine which takes in the air in the room under positive pressure - helps him to breathe without struggling so hard.

I still don't see what was so disrespectful about what I said but I guess we will just have to disagree on that one.

Will look into the website you have provided thanks for that - will let you know how it goes.

All the best

Eun
Sorry I'd missed the bi pap part and assumed oxygen. Just goes to show what assumptions can do Image . Might make some difference but along with everything else it's probably worth a go. Worst case scenario is no change, in terms of the help available. Might be worth talking to the helpline about it?
"If you are optimistic and positive...good stuff tends to come your way" and "..if you assume the worst and plan accordingly..that is exactly what you get..."

I am sorry but are you for real? Have you even the slightest idea what caring for a severely life threatened disabled person is like? A person for whom a cold can very very rapidly descend into a life threatening chest infection? My son is spending his time fighting to live not going for jaunts to the Alps. Try and be a wee bit more understanding of those of us that no amount of positive thinking is going to change things for. Some people have incurable and progressive conditions which will only get worse. That is a fact and no amount of positive thinking and foolish optimism will change that fact.

Eun
Eun, your son's future may well be very bleak and yet mine is sunshine all the way, well until early onset dementia hits him in his late thirties or early forties as it does most people with DS. Who knows? And yes, I do also have the experience of caring for an older family member with dementia, lung disease, an amputation, and mental heath issues - and of being there by the bedside when he died: I'm a sandwich generation multiple carer. No big deal, I just fit it into my life. And my own parents have a combined age of 180, so there are two more deaths to wait for, such is life, there is only one way out of it for all of us, the only uncertainty is the timing. So, what a surprise, there are many different kinds of caring situation, and this depends on variables such as age, morbidity and mortality of various conditions.

We are all going to die, sometime. I think we knew that already. What I am trying to say is that as a carer, my present life is very rewarding, I am getting great support, and I am really enjoying every minute of it. And being a carer is not all doom and gloom, far from it. So I am not about to shut up and try to pretend I am unhappy just because you are. We are all carers, but we seem to come at it from very different angles. Maybe I'm just getting quite good at accepting my limitations, accpeting I have no power over life and death, a more accepting or gracious form of moral philosophy? So, let's all try to avoid generalities, and especially, try very hard not to be insulting and personally abusive, shall we, because I thought your last few comments were a tadge insensitive?
Excalibur I shall probably get banned like a naughty schoolgirl for saying this but ho hum - if you want to see insensitive have a look in the mirror. In what way do you think I was insensitive - have you ever read over some of your own postings?

Eun
In actual fact, when things go over the top and bans are put in place, there is rarely any announcement at all. It happens, the individual spends their time off-site, and it's rare that anyone even notices. I believe a few bans were announced in the past, but generally it doesn't happen these days.

What usually happens is that people are given a warning, sometimes another, and then off to the cooler for a few days.

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