Ouch! Talkpermalink
Things the state should provide, but doesn't
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Hi, I am writing an article and need to illustrate it with situations where the state should be providing for people with disabilities / impairments, either through the NHS or social services, but doesn't actually provide what it should.
I am talking about situations where the NHS or SS should be obliged (e.g. due to their own rules, or legislation) but do not provide - rather than just what you feel they should provide (as I'm sure you would feel they should provide far more than they do, that's a given!)
If you are kind enough to comment, I will not attribute anything to you personally, it would just be "For example, I know of someone who should be getting X according to the law, but in fact has received nothing at all".
I would appreciate any comments (and reasoning for WHY you are entitled to the thing you are not getting).
Cheers! -
The care thats written on the care plan and not 10minutes because the carers running late and has to get to the next call, it makes you feel that your on a prodution line and hurrying hurts!
On the same matter, travelling time should be allowed between visits and not left to the carer to shave traveling time from visits.
Funding explainations should be clear, when disabled people ask for help with stairlifts for example you recieve a mad piece of paper saying you need to pay £77,000 or something and no one can tell you how that figure came from.
DFGs shouldnt take years, if you have jumped through all the hoops it shouldnt take another 18 months for work to begin, thus making the time of application to work starting is over 2 years.
The NHS provides crap end of life care and this shortens the lives of our loved ones, you visit and they havnt been fed, medicated and they are dirty, often sitting in there own filth. My gramps spent months in hospital near the end of his life and I wouldnt let my dog live like that.
My gramps final living journey was to a care home for NHS funded end of life care and he was discharged in the morning, we spent 6 hours waiting for a ambulance and unbeknown to us all ambulance calls go in and the NHS see how many they can do and after 3pm private ambulances are called in to what everever calls are left and his ambulance came after dark. From the moment of his discharge the staff did nothing for him, no meds, no food, no emptying of his catheter or pads, we had to do everything. What would have happened if I wasnt there? Ambulances should be prioritised for end of life patients, its hard enough a loved one dying without the anguish.This is a reply to this message.
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Thanks so much for that response (and I am trying to stay calm; what you've described is a travesty!)
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I think an important point to make is the importance of equality of access to care in all areas and a consistent quality of care. In other words the postcde lottery which currently exisits is wrong.
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Totally agree with Citron.. It also needs to be made clearer what consitutes you being placed in which levelof need .. in my area mobile older people prone to falls usually end up in the substantial risk zone and thus get help.. younger people who have falls due to medication, and dizziness due to medical conditions rarely do unless as a result of a fall they become further impaired.. the risk isnt measured in the same way.
Ive had several falls due to a combination of vision problems and dizziness but I can get no help with " care " a nighbour across the road who is elderly and gets out and about far more than me does .. the only real difference to the risk of us injuring our selves is age.This is a reply to this message.
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There was lady in hospital opposite me who was entitled to be fed.
All she needed was her food cutting up, and someone to sit with her. Not feed her, just sit there for a few minutes til she started eating. Oh, and to provide her with tea in an ordinary cup.
Not a lot to ask, is it?
Personally entitled to;
SS care, not received as they didnt understand the implications of my condition.
Pain relief, not received whilst in hospital for 6 out of the 14 days. The first 6.
Operation not done immediatly, or the next day, or the next, because the targetted hip ops came first. No food, or drink, or a wash, or a change of clothes, or a bed, or an alarm for 72 hours. Just in case they could fit my emergency operation in. (If they had done it more promptly I wouldn't have been posting here.)
The list is endless.
A council disability accessible bungalow that a wheelchair cant access because of no ramps and doors that are too narrow. ("Just put a hole in the wall, thats what the last one did").
Hospital transport, drugs that are "too expensive", therapies that disappear before you get to the top of the 9 month waiting list, the list goes on and on.
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My father should be getting a 6 week course of physiotherapy following breaking his leg. He is not because the orthopod wrote the instructions on the letter badly/incorrectly and the jobsworth physio will only do what it says on the letter.
I sometimes think I possibly should be entitled to the HRC of DLA. I get MRC due to my need for "supervision" (because of the bones breaking thing) during the day. Because of all my other medical stuff I'm frequently up and about during the night meaning I'm just as at risk of falling and breaking something at 5am as I am at 5pm. But I daren't ask for my award to be reconsidered because they screw so many people over and I just don't have the spoons for dealing with appeals and court cases and all the other gubbins that comes with asking for a review.This is a reply to this message.
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my husband is on dialysis and the hospital will not provide him with hospital transport as they say "hes young and fit" so 3 nights a week after 4 hours of dialysis he has to get the bus home which takes 2 hours or i get him a taxi which costs £23, we r unable to claim this money back as the hospital will only pay for the cheapest form of transport,
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All health provision at the point of need.
All care provision at the point of need.
A universal care scheme.
A joined-up benefits system.
Provision of social housing where needed.
A decent retirement pension for all.
Education up to and including tertiary level for all who qualify.
A progressive income tax scheme.This is a reply to this message.
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Equality of care, both my social worker and the care agency agree I need a higher care package than I currently recieve - but because of my age (near 30) I am not in the priority groups (under 18, over 65 or completly incapacitated) and as I am borderline for the next level up, and have friends and a fiancee who are willing to take up the burdon (much to my upset and embarisment at times) they keep telling me that I have been rejected by panel for increased care.
Even if they did increase my care package it would still be wofully inadequate and dehumanising i.e.
instead of providing someone to sit with me during the day to help me go to the loo, help me prepare food and drinks, take me out shopping, socilising etc I would get the following:-
#someone to come in in the morning to get me out of bed, shower and dress me (currently all I get)
# someone to come in three times a day to change my nappy (which I don't currently need to wear, I just need help to get to and on and off the loo)
# meals on wheels (which I've tried and they don't even feed my best mates 2 year old adequatly - after polishing off a roast dinner she was still complaining she was hungry)
# a flask of hot drink which would be refilled by the care worker when they came to change my nappy
# someone to come in to undress me and put me to bed at night (a job my fiancee is more than happy to do, I don't mind this
)
#someone to come in once a week (I presume) to clean
but I would have to get rid of my 2 cats because they would not do litter trays or feed them or wash the food dishes
I would have no quality of life and quantity alone is not good enough for me (I'd rather be dead - than just waiting to die)This is a reply to this message.
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wheelthing
if you were to add
'all pigs fit and ready to fly ' at the end of your list then it would be as likely to happen as any other item on your list
- sad but true
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wheelthing
if you were to add
'all pigs fit and ready to fly ' at the end of your list then it would be as likely to happen as any other item on your list
- sad but true
Please, unlace your boots,
And, go softly on;
My dreams are fragile,
And, easily broke.
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The 'state' has a legal and moral obligation to provide for its sick and vulnerable people, this was the foundation stone of the NHS, to this effect the 'state' posed to adhere to the human rights laws, and the disabilty ones, once they start doing that then we will get all the empowerment, support, and access we are entitled to as are able-bodied people. The disparity is that they pass laws to shut us up and then do not follow it through with the means to make it work.. I expect total equality with anyone else, it's not up for debate... I don't want more than anyone else, I want the same...
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Ah but when they have abolished the NHS...
Which they will, given time.
Then they will come for the Welfare state.
Except they are already.
And the power will be placed in the hands of the SS, who are being measured for jack boots as we speak...
Hope you have family and community, cos it will be THEiR responsibility to look after you.
Seems like a bad dream? Nope, its true.This is a reply to this message.
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wheelchair voucher suited to needs
spectacles voucher adequate to minimal essential cost for complex prescription
accessible and parkable nhs premises
workable taxi and transport vouchers
adequate supply of blue badge parking and accessible goods and services including public transport
useable exercise facilities
heat insulation subsidies applicable to tenants and including single glazed windows and wall lining slabs (instead of exclusively obsessing about cavity walls and lofts, which does not apply to most of the poorest people)
openable doors and useable clearly signed fire escape systems
no age discrimination
a variety of seating heights in public places
an opportunity to take part in education and community despite periods confined indoors (not an obsessive requirement for physical presence in a certain building at a certain time)
independent and appeal-able assessment of personal and physio and housing and equipment and adaptation needs, followed by immediate voucher
a disability housing needs mandatory weighting entitlement on LHA housing allowance
no age discrimination on DLA
an ability to move freely round EU or even across borough boundaries without becoming destitute
a right to bid for disabled-suited housing list, equally with non disabled tenants' list
All the above should and would be available if public service providers complied with their Statutory Duty under. D.E.DThis is a reply to this message.
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I sometimes think I possibly should be entitled to the HRC of DLA. I get MRC due to my need for "supervision" (because of the bones breaking thing) during the day. Because of all my other medical stuff I'm frequently up and about during the night meaning I'm just as at risk of falling and breaking something at 5am as I am at 5pm. But I daren't ask for my award to be reconsidered because they screw so many people over and I just don't have the spoons for dealing with appeals and court cases and all the other gubbins that comes with asking for a review.
Completely agree. I get MRC based on my EDS / hypermobility issues, but I am up 4-5 times every night due to bowel problems and really need someone to fetch me a cold drink but end up drinking a warm / stale one as it's too hard to get downstairs and back at that point - among other things (which can involve laundry if I didn't get to the loo in time, and I can't manage to change the bed or load the washing machine).
But I don't dare reapply in case I somehow lose what I've got.This is a reply to this message.
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I have a 2.5lt electric water cooler next to my bed flash for similar reasons to you, it cost £12 and Ive had my monies worth many times over.
Before the cooler I used insulated cycling bottles at night for cold drinks and I do still use them during the day.
Nothing to do with DLA, just how I cope.
ddThis is a reply to this message.
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I concurr on the wheelchair - I'd like a voucher for the one the wheelchair assessor admitted I needed rather than the one I was offered. Instead I was advised to write begging letters to charities.
Also the LHA disability premium. We should be entitled to extra housing allowance when it is impossible to find suitable accessible accommodation (e.g. ground floor flat) at the LHA rate.
Other suggestions:
A food service that can cater for restricted diets and allergies. Alternatively, extra carer time should be allocated for a cook to prepare meals if the SS cannot supply suitable meals-on-wheels or frozen meals. The £17.75 per week lower-rate care DLA for meal preparation doesn't cover anything like the actual cost of getting someone to prepare daily meals for you.
Bleeding obvious but ignored in my city: adequate fire safety procedure in public buildings. If they contract out compulsary 'Pathways to Work' interviews to a charity whose office is on the second floor, the charity should have a (practised) fire evacuation procedure in place and at least one evac chair on hand.
And an extra 'would be nice' for equality of opportunity: the option to study abroad with DLA and DSA funding intact.This is a reply to this message.
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Oh yes, on the wheelchair...as well as officially being entitled to a wheelchair that suits my needs (i.e. one that allows me to move independently without severe pain), I'm also 'entitled' to a separate assessment for a cushion, but that doesn't happen in reality.
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yes they should not withdraw support because someone has been change from severe persoanlity disroder to untreatable severe poersoanlity disorder
imagine if they did this to a cancer sufferer
if u r in need of help, you can get it, but if they diagnose ur cancer as terminal, all help (and i mean ALL) is withdrawn.
the only reason i got help again coz i was booted out 4 gp surgereys and ended up in a complex needs thing where security guard accompinies u for doctor visit
then somehow, i see on my records i am on both national mental health and severe mental health databases
so why withdraw support if u r untreatable?
i am not on about "but u can't get better" arguement, coz that is said about terminal cancer
we are unable to do so much, and just coz we have no chance of getting better shoudln't mean all support, like practical, weekly catch ups, support workers etc withdrawn
imagine it with any condition other than mental health, it wud never happen
"oh, you are too old to recieve old peoples meals on wheels"
"oh, you are in too much pain to recieve pain meds"
the only thing they didn't do was chop off my benefits, mind u, they made em indefinte. yes, one way to ensure someone never comes backThis is a reply to this message.
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