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  • #74272
    Continuing Health Care Assessment – farce

    Rant alert!

    I will try to explain as best I can what happened at my CHC assessment this afternoon and a bit of background. About a month ago I had an ILF review which was also attended by my local SS – a social worker who I had never met before! It got down to the who-pays-what part and the Social Worker said that due to the tightening of the budget her bosses would suggest going for funding from the NHS in the form of CHC money – although also said I probably would not meet the criteria :? But as you are all aware, these hoops have be gone through to satisfy those with the purse strings..

    So today was my CHC assessment, one lady arrived early and I was having an informal chat with her about my situation and what was going to happen and then she dropped a bombshell! If they did the assessment that afternoon and I was deemed eligible for CHC funding then it would set the wheels in motion and there’d be no going back. Alarm bells started but then got louder when she explained that the NHS would effectively manage my care. My carers would have to join an agency and go for training, I would no longer have control of my budget which would mean no more flexibility but I immediately saw more issues. If under an agency, carers would not be insured for manoeuvres deemed against health and safety. I would not be prepared to allow my carers to carry on the way we are if they were not covered. Also, I am not sure my regulars and particularly my casuals would be prepared to go through all sorts of necessary training.

    So… I refused to have the assessment without having more info on the implications which I should have been informed about before. I am pretty peed off that had this person not been on the ball then I might have unwittingly agreed to something that could have changed my life considerably. And what a waste of two people’s time coming out for assessment that didn’t happen. I fought for the control and independence that I have with Direct Payments or Personal Budget as it will soon be called. I am not impressed and fear that more people will be put in this predicament without their knowledge. Of no-one was in the office this afternoon!

    Utterly dumbfounded at this debacle and I can’t be the only one this is happening to? Ironically, I can see the mental and physical stress of having CHC funding would make my health deteriorate.

    Ok, all out. Discuss!

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #84644
    Re: Continuing Health Care Assessment – farce

    I would suggest you put this all in writing along with a complaint about the social worker to those in charge. It is utterly disgusting that you were almost rail roaded into this, had you not been as mentally competent as you are this could have had very serious implications for you.

    Yet again anti social services cock things up :roll:

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
    #84642
    Re: Continuing Health Care Assessment – farce

    Sorry you are having all this worry.

    Vicki’s advice sounds good.

    Shouldn’t this all be sorted long ago?

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #84643
    Re: Continuing Health Care Assessment – farce

    It is starting to look like someone who us dealing with my case doesn’t know what they’re talking about. Goalposts are moving within Social Care and this all kicked off with my ILF review – they partly fund my care. The review is on hold while Social Services decide what they will pay and the bottom line is they want to wriggle out of paying what they do at the moment. This review happens every two years but this has usually been pretty straightforward and stress free. I think I’m most annoyed at either being kept in the dark about the implications of today or the fact that no one seems to know what they’re doing! Whatever the case, I am going to try and get to the bottom of it in the morning…

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
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    Posts: 2,246
    Joined: 05/03/2015
    #84645
    Re: Continuing Health Care Assessment – farce

    Hope your finding out some better info – I know I’ve spoke to you already but this might be useful for someone else too.

    As with many things, prior to the last few years, forward thinking social services /adult service departments were enabling people to accept funding to organise their own support – via health/NHS. Basically, the NHS can pay a third party (social services) funding for a patient. Social services then pass on this funding to you and me.

    Under the NHS Act of 2006 a case of someone with neuromuscular problems tried it out in court and the ruling confirmed the NHS could not pay her directly. Some local authorities will not even set up ‘third party payments’ even though in law they could.

    How far are we in changing this stupid law?

    The law was changed around 2009/10 to allow some pilot local authorities to administer Personal Health Budgets. I’ve done quite a bit of research on these for my book. You can see where the department is up to with these. Basically there is some concern from medical staff that PA’s should not be allowed to support someone with ‘technical things’ – like ventilation, suction, internal catheters, medication administration…. not to mention the dreaded manual handling. The fact is though, lots of us do these things every day with our PAs from social care funds, without disaster! So some are very anti Direct (Health) Payments.

    http://www.personalhealthbudgets.dh.gov.uk/

    Until then, we are left to campaign for the right to have our third party payments. I’ve set these up lots of times when I was in Social Services and as a consultant. Some departments do resist but perhaps an MDC advocate could add some weight.

    The other concern for neuromuscular folks is ‘when does social care become health care’. Some would say ‘when the social service department runs out of money’ as opposed to complex medical need.

    Lack of funds is forcing people to seek medical/health funding for needs which might not necessarily be medical. I would say vent support is not exactly medical although a doctor would beg to differ!. I say the difference is ‘ do I need a qualified nurse or medically qualified person to perform the task’. The answer for me is no, because my husband and PAs are just told to get on with it and they aren’t medically qualified – so if they can do it safely and don’t need training then maybe its not medical after all? Difficult one. Could be argued both ways.

    If anyone wants any more info then I can probably put my hands on some more links and references I’ve been accumulating.

    criptic
    Participant
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    Joined: 15/03/2011
    #84649
    Re: Continuing Health Care Assessment – farce

    Brilliant info criptic, thank you.

    Spoke to someone at the Independent Living Advice Service on my area and was told there are a number of ways that NHS contribute to care. I was only told about one, see above, but apparently my authority have other methods and it tallies with what criptic has said. Why don’t people employed to carry out these assessments know how things work. I feel better to learn that there are others in my county who have been able to carry on with what works for them and still receive CHC funding. I am not even sure I would meet the eligibility criteria but I was not prepared to find out withough knowing the facts first. How unnecessary all the stress was yesterday! :roll:

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
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    Posts: 2,246
    Joined: 05/03/2015
    #84650
    Re: Continuing Health Care Assessment – farce

    It just pee’s me off that these people get to have a say on how we live without knowing the implications :roll:

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
    #84647
    Re: Continuing Health Care Assessment – farce

    Sar78 – So sorry to hear you are having these difficulties, as criptic mentioned the Muscular Dystrophy Campaign does have an Advocacy Service and takes on many cases where patients are denied vital services. I would be happy to discuss this further with you, I can be contacted on freephone 0800 652 6352, on my direct line 020 7803 4805 or email c.kelleher@muscular-dystrophy.org

    clairemdc
    Participant
    Posts: 5
    Joined: 19/10/2010
    #84648
    Re: Continuing Health Care Assessment – farce

    its that old chestnut of so called professionals thinking they know best but obviously have no idea …we are the pros as we live with md . hope you get a positive outcome soon sara

    rachelmurphy
    Participant
    Posts: 65
    Joined: 02/02/2011
    #84646
    Re: Continuing Health Care Assessment – farce

    Sarah sorry to hear of all the problems you are having and I hope you get it sorted out soon. I am so fed up with the people that are supposed to be helping and supporting us not doing their jobs properly.

    Valerie
    Participant
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    Joined: 15/09/2010
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