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Carers UK Forum • OUR timetable - Page 2
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You are not alone, battling

Posted: Wed Oct 06, 2010 11:07 am
by rabidrabbit
You are not alone, battling with the experts is part of the job, even when you have an expert who actually knows and has worked with the person you care for and has written a report other experts who have no prior knowledge of them and very little current knowledge always know otherwise and best.

I quite agree- but what is worse is when your life is being manipulated by people who are not expert in any sense of the word. Our lives in recent years have been made almost unbearable by care assistants who have an NVQ in bottom wiping at the most, social workers with no LD experience who think adults with LD are "eternal children" and who had a false and innacurate record of my sisters life., a GP (who had just 4 months experience as a GP) who thought my young looking sister couldn't have Downs Syndrome cos older Downs people look yuk and she doesn't throw her arms around everyone like a monkey ( his actual words!). Couple with them a local ignorant busybody who thinks she knows everything about LD cos her neice is so afflicted and a relative with a serious psychotic illness who hasn't seen us in decades and thinks my sister's condition is down to aliens ! Yes all these idiots have been having a say in our lives and the calamity that has ensued is farcical- I have to laugh about it otherwise I would go and string myself up. Why don't these idiots just let us live our lives? Whilst all these crackpots were busy constructing a strange reality no one asked us anything until a real expert came along in the shape of a LD nurse- I notice she didn't stay long up here after having to deal with that fiasco. In the meantime all the crazies are all pretending nothing ever happened or have disappeared ( including the terrible GP) and the LA are trying to pretend that their " new" LD service is the best there is Image

So, this is not unique.

Posted: Wed Oct 06, 2010 1:41 pm
by Lil r
So, this is not unique. Question is, what can we do about it?
Are we or are we not still fully in control of the daily activities we wish to partake in if we are under care of a care team?
If the care team are breaching guidelines, who do we tell? It's pointless complaining through the NHS complaints procedure as it takes ages and the answer you get back is always opinion based and never backed up with evidence, which means you likely end up at the ombudsman, which could take more time.
In my experience so far, it seems like no one is accountable and it just continues.

Have you tried looking for

Posted: Wed Oct 06, 2010 2:51 pm
by Sassy
Have you tried looking for organisations that work with people who have the same condition(s) as your husband?

As things just so happened to be, Dave and I found out about a place in this area for amputees, just when his DLA forms were just about ready for renewal and they not only filled them out for us but they put us un touch with what was then the Disability Right's Commission. However, this has now closed and become Equality and Human Rights Commission - thier address is here http://www.equalityhumanrights.com/ I've not yet had a chance to have a look around this site but there should be something there that should offer you a little help if not a leg to stand on

So, this is not unique.

Posted: Wed Oct 06, 2010 2:54 pm
by rabidrabbit
So, this is not unique. Question is, what can we do about it?
Are we or are we not still fully in control of the daily activities we wish to partake in if we are under care of a care team?
If the care team are breaching guidelines, who do we tell? It's pointless complaining through the NHS complaints procedure as it takes ages and the answer you get back is always opinion based and never backed up with evidence, which means you likely end up at the ombudsman, which could take more time.
In my experience so far, it seems like no one is accountable and it just continues.
Like Littlerachet I just don't have the energy any more to be constantly complaining officially. I just make little digs where I can. Technically my sister is only under a care team when she is in the respite place but just because I use a social service facility they seem to think they have the authority to run our lives. I have a solicitor who has pointed out all the legal pro's and cons to them but that just made them worse. What can you do about an authoritarian system who think care in the community means institutional care but out on license ie you may only live as you do if we let you and you abide by our rules ( which are not the real rules). I have always had the law on my side and have found that at the end of the day they hoist themselves by their own petard but the stress of always keeping guard takes a terrible toll. I know that if I complain the buck will just be passed around. The care workers will blame the social worker who will blame the doctor who will blame the district nurse who will blame the social worker and so it goes on. The whole damned system is at fault and all we want to do is live like normal people and these jokers are always singing out the Equality message when they are the worst offenders re human rights. I have considered taking a ECHR action against them but what's the cost? Just that they know I am thinking about it has put them in their place and kept them on their toes. Knowing then law can be just as effective as using it.

I am curious to know

Posted: Wed Oct 06, 2010 3:32 pm
by Guest
I am curious to know where these experts are based, littlerachet, because their plan seems to be predicated on an institutional model of care where managing patients in order to achieve efficient staff management plays a large part rather than on the more flexible model of care that one normally associates with an individual living at home which is supposed to be person-centred.

This is in South Wales

Posted: Wed Oct 06, 2010 11:58 pm
by Lil r
This is in South Wales - it is a new scheme and not person centred at all. Yes, they had training specifically for my partner as he is a 'complex case' but it is run like we are in an institution. I mean, no one but us should be writing our timetable for gods sake and as for guidelines, do it the way we want it done - there's your guidelines! check them to make sure they adhere to your hundreds of policies by all means but they are our guidelines. We are still struggling to get my partner to the gym more than once a week because the carers don't like going. I have never understood this. It shouldn't be about what they want - it should be about what is best for my partner and the gym was his first love before his accident and it is sooo good for his disabilities, not to mention his morale.
Basically they just want everything put in a box, everyone wants to wade in with what they think should be done, which is generally wrong. They hate the fact that we have a private physio, even though she is amazing and is getting real results. Just because she is not NHS. It does not seem to be about what is best for my partner, just what fits their normal protocol. They cannot seem to think outside the box at all. The main lady that manages this - all she ever talks about it running an equitable service.
Tell me - what should person centred be?

thanks for hitting the nail

Posted: Wed Oct 06, 2010 11:59 pm
by Lil r
thanks for hitting the nail on the head parsifal

We also have the private

Posted: Thu Oct 07, 2010 2:21 am
by Guest
We also have the private physio problem, the NHS would not provide the specialist physio my husband needed post stroke so I decided to pay for it, when he is back in hospital and needs physio on discharge the NHS refuses to provide it, the private physio has no problem working with the NHS physios but the NHS physios have a problem working with his private physio, they will not even contemplate it.

What the NHS fails to recognise is that if the scan had not been delayed for 48 hours in contravention of guidance when he had the stroke despite it being obvious and acknowledged that he had suffered either a stroke or haemorrhage and me asking for the scan in A&E my husband would have received the treatment he needed earler and would not be so disabled and had we not paid for physio when the NHS would not provide it he would now be in and out of hospital and more dependent on social services.

This is the one batlle I lose over and over again, the NHS will not provide physio for my husband and quite honestly, having managed to get the NHS community physio out briefly last time he came out of hospital and needed continuing rehab, I think that I prefer to pay for it, I was not convinced that she was actually qualified.

When I first injured my

Posted: Thu Oct 07, 2010 5:05 am
by charles47
When I first injured my back I was paying into a private physio service. I'd used up my allocation when my GP referred me to the NHS. After three weeks I could barely move, let alone walk.

We found the money to go back to my private physio who was shocked at the state I was in: when I explained what had happened, she told me that the NHS physio had given me "contra-indicated" exercises.

hi i may have lost the

Posted: Thu Oct 07, 2010 9:36 pm
by sunnygirl
hi
i may have lost the thread here a little bit, i am not 100% sure what disability you are dealing with but it is obvious you have to have a large amount of imput from carers. Although it is a brave step and needs strong resolve i would ask to be told what your husbands personal/individual budget is , IE how much is spent on all his care needs by everyone involved. sit down and work out if that employing your own staff who you have interviewed and chosen , would make things better. Having your own 'team' means you control the 'plan' you control the 'communication' the rules etc . If you value your staff and you create a fair and equal team you will feel loved and cared for and supported , all health and safety can still be followed but you can create a flexible team that in time may work in the way you want them to, I work as a support worker for 2 young ladies , i feel part of their lives , i try to not interfere , but i am a strong advocate for them when they feel tired and unable to fight the battles with doctors , nurses, etc. I love being part of their 'team' and i answer to no-one but them. It is a very liberating way to work and can be a positive experience for all involved.
good luck i hope things improve soon.