I watch the news about Libya and Egypt and Syria and worry. No you haven't come to the wrong blog. I see the disruption and worry about the people with disabilities living there. What happens to someone with a learning disability caught up in these events? Do people with physical and mental disabilities get through situations like this? What personal stories are unfolding, unnoticed by the news when people get separated from their families?
I assume it's informal family carers who carry the burden where there is a limited welfare state - maybe I'm wrong. The horrors of Rumanian disabled children under an earlier regime are well documented. Is it like that and ignored because it 'is old news' or are they isolated individuals, in separate families, left to cope as best they can, invisible among the political upheavals. 'Simple' things like power cuts, water supply problems etc. can be life threatening for people already on the edge - put violence and disruption on top and people who can't, or don't understand how to, run away, are likely to be some of the early casualties.
I know it's war and bad things happen but that doesn't make it any better. I don't have answers and I feel I should put something positive in rather than just bemoan the situation. I can only hope people like Medcin sans Frontiers and similar organizations are picking up some of the pieces and give them money to help - I don't even know if they're in war zones.
When you next see the news, think also of the disabled and the people that care for them, caught up in it. And if you can see a way to help, do so (and spread the word).
Friday, August 26, 2011
Sunday, August 21, 2011
Life can be good
In the midst of all the care package wrangles - life goes on. And yesterday it went on fairly well. Because we can't take him on holiday (part of one of the wrangles.) we resolved to make sure he had a good number of special days out when he was well, and yesterday was one of those.
An important part was that he was awake for most of it. (Sleep pattern is in 'extended' mode at present - 48 hours awake, 48 hours asleep -ish.) Went to a good, hands on zoo that turned out to be very wheelchair friendly. He got to feel a python, was harrassed by lemurs, had a very close encounter with a cassawary and was licked by a giraffe. Avoided being peed on by a lion, didn't get bitten by anything and took in his surroundings most of the time - even on the journey.
A good day was had by all, with very few fits. Even the gastric bleed seems to be settling a bit. Only one minor problem with his feed pump and we enjoyed the day too. The whole thing made possible by a nurse voluntarily working a double shift - she know who she is - thank you.
These days are like islands in a sea of meetings, procedures, complaints letters and general harrassments and to be treasured greatly. Not sure what we'll do next year when he loses his mobility allowance, as it funds his adapted vehicle - but that's just another wave we'll have to surf when the time comes.
An important part was that he was awake for most of it. (Sleep pattern is in 'extended' mode at present - 48 hours awake, 48 hours asleep -ish.) Went to a good, hands on zoo that turned out to be very wheelchair friendly. He got to feel a python, was harrassed by lemurs, had a very close encounter with a cassawary and was licked by a giraffe. Avoided being peed on by a lion, didn't get bitten by anything and took in his surroundings most of the time - even on the journey.
A good day was had by all, with very few fits. Even the gastric bleed seems to be settling a bit. Only one minor problem with his feed pump and we enjoyed the day too. The whole thing made possible by a nurse voluntarily working a double shift - she know who she is - thank you.
These days are like islands in a sea of meetings, procedures, complaints letters and general harrassments and to be treasured greatly. Not sure what we'll do next year when he loses his mobility allowance, as it funds his adapted vehicle - but that's just another wave we'll have to surf when the time comes.
Sunday, August 14, 2011
Mind the gap
Bit of a worry about nursing staff availability just now. One member of team ill, another having to take time off for personal reasons and others with holidays booked. Had our first bit of 'emergency cover' (i.e. we take over at no notice) for a while - not a problem yesterday and massively helped by another team member working 'above and beyond'. Can't help worrying about what's going to happen. Don't like relying on this sort of good will but thankful it's there.
There's the high probability that we'll have to pick up random shifts at no notice (probably consecutive ones), but as big a concern is the effect on his care quality. In these situations we have to use bank and agency nurses, and (with a few notable exceptions) some of them aren't as good or caring as his main team. The commitment of his main team is enormous and probably spoils us for the 'ordinary' care levels, but I still want the best for him.
Any plans we have now go on hold indefinitely. I dread to think what it would be like if we had to organize this, sort out payments, sick pay etc. as we would if we used Direct Payments. The thought of 'Personal Budgets' makes me very frightened. We'd have all the admin. and paperwork as well, just at the time we were under most pressure. This is why we don't want 'personalization' - it might work for some but not for us. It's a great theory but in a real world of limited resources (not just money - the difficulties of recruiting good staff) it isn't a 'cure all'. The fear of who would deal with all this if (when) we're not here is truly scary.
At least his health is still improving. Had a good first day out for some time yesterday, though the stomach bleed (caused by heavy duty antibiotics) isn't properly healed yet.
There's the high probability that we'll have to pick up random shifts at no notice (probably consecutive ones), but as big a concern is the effect on his care quality. In these situations we have to use bank and agency nurses, and (with a few notable exceptions) some of them aren't as good or caring as his main team. The commitment of his main team is enormous and probably spoils us for the 'ordinary' care levels, but I still want the best for him.
Any plans we have now go on hold indefinitely. I dread to think what it would be like if we had to organize this, sort out payments, sick pay etc. as we would if we used Direct Payments. The thought of 'Personal Budgets' makes me very frightened. We'd have all the admin. and paperwork as well, just at the time we were under most pressure. This is why we don't want 'personalization' - it might work for some but not for us. It's a great theory but in a real world of limited resources (not just money - the difficulties of recruiting good staff) it isn't a 'cure all'. The fear of who would deal with all this if (when) we're not here is truly scary.
At least his health is still improving. Had a good first day out for some time yesterday, though the stomach bleed (caused by heavy duty antibiotics) isn't properly healed yet.
Thursday, August 11, 2011
Out of the loop
Just swapped e-mails with another carer/friend. She's apologizing for having to drop out of the campaigning loop as her disabled son's condition has taken a turn for the worse. I understand her completely. I have to do it myself on a regular basis. As carers, we all understand and make allowances. It does mean we lose some battles because we simply can't be where we want to be to be heard because the care we do is more important than any meeting.
The people we find understand least are the paid professionals. This isn't meant as a dig at Social Workers etc. - it's simply a statement of fact. As a carer your first priority and prime motivation is the care - everything else comes second. There are very few paid professionals, no matter how committed, who would continue coming to work if the pay cheques stopped - and I wouldn't blame them.
It is however quite difficult when you raise an issue and are told, 'we decided on that at our last meeting - if you'd come you could have had your say.' I'm not saying that's wrong or that I have a solution, just that some understanding of the position we're in would be welcomed. I recently managed to instigate a working group to get a local issue on the agenda but then had to miss the first meeting for 'care reasons'. The result was that I didn't get told about follow on meetings and notes I'd sent in didn't get discussed. The working group has now gone off on a tangent and I'm going to have a battle to get the original issues back under consideration.
I offer this as a description of an unlevel playing field. I don't have a solution but it's certainly a problem. The extreme version of this is the carer who works alone and in isolation and never gets any consideration of their needs/views - and therefore no service. I know there are lots of them - I used to be one. I still meet them in hospital waiting rooms etc.. The more disabled the person you care for is, the worse this is likely to be - the most isolated and excluded tend to be those in greatest need (for the little evidence around, see the Mansell Report).
Carers and the severely disabled do need special consideration and more understanding than normal. It isn't easy putting yourself in their position but please try. Thanks.
The people we find understand least are the paid professionals. This isn't meant as a dig at Social Workers etc. - it's simply a statement of fact. As a carer your first priority and prime motivation is the care - everything else comes second. There are very few paid professionals, no matter how committed, who would continue coming to work if the pay cheques stopped - and I wouldn't blame them.
It is however quite difficult when you raise an issue and are told, 'we decided on that at our last meeting - if you'd come you could have had your say.' I'm not saying that's wrong or that I have a solution, just that some understanding of the position we're in would be welcomed. I recently managed to instigate a working group to get a local issue on the agenda but then had to miss the first meeting for 'care reasons'. The result was that I didn't get told about follow on meetings and notes I'd sent in didn't get discussed. The working group has now gone off on a tangent and I'm going to have a battle to get the original issues back under consideration.
I offer this as a description of an unlevel playing field. I don't have a solution but it's certainly a problem. The extreme version of this is the carer who works alone and in isolation and never gets any consideration of their needs/views - and therefore no service. I know there are lots of them - I used to be one. I still meet them in hospital waiting rooms etc.. The more disabled the person you care for is, the worse this is likely to be - the most isolated and excluded tend to be those in greatest need (for the little evidence around, see the Mansell Report).
Carers and the severely disabled do need special consideration and more understanding than normal. It isn't easy putting yourself in their position but please try. Thanks.
Monday, August 8, 2011
Bitterness comes in many forms
Lots of things going on - most important, sons current health. We're now into the post chest infection, drug induced side effect rectification phase. Happens whenever he has a bad chest chest infection and has to use one of the more aggressive antibiotics. Grateful though I am to Dr. Alexander Fleming et al for antibiotics in general (he'd certainly not be here without them) - they are not an unmitigated blessing. The current one is quite corrosive and has resulted in a gastric bleed, (This has happened before, usually as a result of steroids.) so we're desperately altering his feed regime and stomache medication to stabilize things. Hopefully he'll get over this in a week or two and we'll have a period of reasonable health.
Life is complicated and painful for him and sometimes it gets me down not being able to take the pain away.
Meanwhile, we've put in a couple of formal 'yellow card' complaints about his feed system. One of which has resulted in a very apologetic 'complaints manager' speaking to us promising things will improve. I wait to be convinced. Talk on this is almost as cheap as the quality of their equipment. After some digging, I've managed (with a little insider help) to track down the NHS committee responsible for their contract and have had an approach made on the topic. It's time consuming and a hassle but money is what really impacts on them, so I'm 'following the cash'.
His official review stumbles on (one professional, in a public meeting, recently described the length of delay as 'obscene'). It doesn't seem to have made a difference though as both the key people from NHS and Social Services have declined to attend his annual operational care review as they're on holiday (where I used to work, if you couldn't attend at least you sent a substitute) - this obviously isn't high on their priorities.
It soon will be - I intend chasing this fairly vigorously in a week or so. I just hope they're rested from their holidays as they're going to be busy when they get back. (Holidays are not a luxury we, along with most carers and many disabled people, get.)
No apologies for sounding bitter - the care 'industry' has made me that way.
Life is complicated and painful for him and sometimes it gets me down not being able to take the pain away.
Meanwhile, we've put in a couple of formal 'yellow card' complaints about his feed system. One of which has resulted in a very apologetic 'complaints manager' speaking to us promising things will improve. I wait to be convinced. Talk on this is almost as cheap as the quality of their equipment. After some digging, I've managed (with a little insider help) to track down the NHS committee responsible for their contract and have had an approach made on the topic. It's time consuming and a hassle but money is what really impacts on them, so I'm 'following the cash'.
His official review stumbles on (one professional, in a public meeting, recently described the length of delay as 'obscene'). It doesn't seem to have made a difference though as both the key people from NHS and Social Services have declined to attend his annual operational care review as they're on holiday (where I used to work, if you couldn't attend at least you sent a substitute) - this obviously isn't high on their priorities.
It soon will be - I intend chasing this fairly vigorously in a week or so. I just hope they're rested from their holidays as they're going to be busy when they get back. (Holidays are not a luxury we, along with most carers and many disabled people, get.)
No apologies for sounding bitter - the care 'industry' has made me that way.
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