Petition for awareness and policy change

Discussion in 'Dementia-related news and campaigns' started by Shaky, Mar 28, 2006.

  1. Shaky

    Shaky Registered User

    May 10, 2004
    36
    Dudley, West Midlands
    NHS has failed my MOM

    After 4 years of Continuing Care Funding (which I have had to fight and fight for) I now find that funding has been withdrawn and suddenly my Mom has made an immaculate recovery from Alzheimers and now deserves the right to 'means tested' residential care. How I wish she had, of course Mom's dementia has deteriorated over this time BUT our wonderful (paid in to) Health Service dictates otherwise.

    I am fed up with being forced into the role of ‘defence lawyer’ constantly fighting for want should be a fundamental right to Health care!

    I am attempting to highlight this unfair situation by means of a petition, anyone in a similar situation or feels strongly enough to look further please read my website

    http://www.fightthebureaucracy.org/


    Any support, feedback or even ideas on how I can maximise my struggle would be appreciated.


    Phil Shakespeare (Son & Carer)
     
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Do you mean that your mum had continuing Care funding at home because you cared for her ? As now your mum going in to a care home ,she is being mean tested ?

    Could not open any link to sigh on your web page, lovely photo of your mother :)
     
  3. Shaky

    Shaky Registered User

    May 10, 2004
    36
    Dudley, West Midlands
    Thanks for your Comments

    Mom has been in a care home for the last 4 years under primary health funding. I have had to fight many battles but now they have withdrawn that funding.

    The website is just for feedback and support (strength in numbers and all that) I want people to physically sign a professionally printed petition which I want to hand over to senior health ministers or political heavy weights. I will post out petition sheets to anyone who wants to help me.

    Hope this answers your question
     
  4. Shaky

    Shaky Registered User

    May 10, 2004
    36
    Dudley, West Midlands
    NHS has failed my MOM

    --------------------------------------------------------------------------------

    After 4 years of Continuing Care Funding (which I have had to fight and fight for) I now find that funding has been withdrawn and suddenly my Mom has made an immaculate recovery from Alzheimers and now deserves the right to 'means tested' residential care. How I wish she had, of course Mom's dementia has deteriorated over this time BUT our wonderful (paid in to) Health Service dictates otherwise.

    I am fed up with being forced into the role of ‘defence lawyer’ constantly fighting for want should be a fundamental right to Health care!

    I am attempting to highlight this unfair situation by means of a petition, anyone in a similar situation or feels strongly enough to look further please read my website

    http://www.fightthebureaucracy.org/


    Any support, feedback or even ideas on how I can maximise my struggle would be appreciated.
     
  5. jarnee

    jarnee Registered User

    Mar 18, 2006
    181
    leicestershire
    If I have understod you correctly, this is a dreadful state of affairs.

    May I ask....
    What was her care funding for? support at home or in hospital?
    Are they expecting you to sell her house to pay for her care?

    Just a thought....have you considered a petition people could print out and post back to you...it would save you some postage ....and if you could find a way of doing if FREEPOST for replies, it would at least save postage one way, and maybe encourage people to join in.

    Good luck

    Jarnee
     
  6. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Yes it does thanks ,but your going to have to pardon my Ignores ,when I ask you this, (I find the whole system confusing )


    Continuing Care Funding primary health funding did that mean the

    Government is paying for it, so it must have been mean tested at the beginning? If not ,how did that system work in the beginning, for them all of a sudden to stop it?

    What imprecation does this mean to your mother because they can not tell her just to leave the home?
     
  7. Shaky

    Shaky Registered User

    May 10, 2004
    36
    Dudley, West Midlands
    Thanks for your feedback

    Yes the PCT in question has always given me the cold shoulder - they attempted to remove funding in 2004 BUT I fought and got it maintained, this year (for some reason?) I don't appear to have had such luck, I am attempting an appeal AGAIN !?!

    What annoys me is that I have had to fight and then fight some more to get Mom heard and her welfare to be addressed - I don't think the families should have to be constantly defending their loved one's like they are up for some crime in court, the stress of dealing with the condition is nothing compared to the constant 'red tape' you have to plough through, as I keep saying I feel like some bizarre defence lawyer.

    Re: the Petition - good Idea I will make a pdf version that can be printed out and hopefully people can send them back to me then I will compile what I hope to use as a political and/or social awareness tool.

    Remember: when the tide comes in ALL the boats will benefit - if you know what I mean!
     
  8. Shaky

    Shaky Registered User

    May 10, 2004
    36
    Dudley, West Midlands
    Answer to your question

    You wrote <Continuing Care Funding primary health funding did that mean the Government is paying for it, so it must have been mean tested at the beginning? If not ,how did that system work in the beginning, for them all of a sudden to stop it?>>

    The systems falls into two categorise - Primary Health Care (which is FREE as part of the NHS) and Residential Social Care (Which is Means tested i.e. any money, shares or property is noted and you are asset stripped down to your last £12,000 and then you receive the full funding) If you have never worked in your life the welfare is automatically given to you with no 'red tape' or undue pressure on the carer or power of attourney - what a punishment that your hard earned property and legacy leads to you having to pay TWICE into this wonderful health system.

    The basis (known as criteria) for deciding the care is THE grey area, basically which PCT you are under has it's own parameters for deciding who is eligible and who is not BUT they keep re-assessing until the sufferer falls into the means test catergory - so you get a crazy situation where the more the illness takes hold the more reason they have to withdrawl the funding on the basis that the patient is TOO ill to qualify - crazy situation which, by the way, is NOT applicable in Scotland. It is all considererd Primary Care and 100% supported by the Health Service, which WE HAVE ALL contributed in to!!!

    you write <<What imprecation does this mean to your mother because they can not tell her just to leave the home>>

    The have the right to obtain any monies or propery which is in the patients name, you can however put a charge on any said property BUT this is just a big IOU building up that you to have to pay the Social Services department.


    This, given the exposure, would be such a 'hot potato' in terms of elections if the general public could see how people with demensia are being treated in England & Wales!
     
  9. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    #9 noelphobic, Mar 29, 2006
    Last edited: Mar 29, 2006
    Hi Shaky

    This is something I feel very strongly about and I agree with everything you say. I am getting ready for work at the moment but will email more later. It must be so much more frustrating to have the funding withdrawn than to never have had it in place in the beginning. As you say, unfortunately Alzheimers doesn't get better! Has your mum been assessed as needing nursing care, in which case which level is she on, or have they decided that she now just needs personal and social care?
     
  10. ElaineMaul

    ElaineMaul Registered User

    Jan 29, 2005
    333
    Hi Shaky,
    Do you mind me asking what the actual wording of your petition is and who are you going to give it to?
    I have a vague recollection that you have to be quite careful how you word a petition in order for it to be taken seriously ...... more than likely Nada or someone else will know more about it?

    However, I'm with you all the way! I watched the Panorama programme you refer to on your website and was disgusted by the way the people on the programme were treated.

    As for the decision they've made about your Mum ...... how did they justify what they've done?

    Take care,
    Elaine
     
  11. ElaineMaul

    ElaineMaul Registered User

    Jan 29, 2005
    333
    Hi Nada,
    You have raised a valid point. However, given the Panorama programme earlier in march and given the programmes on Channel 4 at the moment, could something not be organised through the Alzheimer's society itself? I know you posted the link on another thread that enables us to generate emails to our MPs ........ would some sort of petition have a bigger impact? Or do things not work like that?

    Elaine
     
  12. Shaky

    Shaky Registered User

    May 10, 2004
    36
    Dudley, West Midlands
    Comments for Nada

    Nada,

    I do see your point BUT given the fact that I have had little or no feeback from the relevant PCT and given 'file in the bin' responces from No. 10 etc, short of shouting in the mirror WHAT medium can I use to convey my feelings and get of my backside to help my Mom AND other people in England and Wales who are currently going through this HELL.

    I have been fighting on my own for FOUR years(!!!!) and they have ground me down to the point where ALL I CAN DO is attempt a ground swell of support. Let me assure you one voice gets lost - many voices get heard, I think my mirror has suffered enough abuse I want some pressure put on the people who treat us this way. People with demensia have paid into the Health Service why should they be forced to pay TWICE for the same care!

    For the record I have approached The Alzheimer's Society who gave me the impression that they have 'done that, tried this and bought the T-shirt' - I feel these people have lost conviction or APATHY has set in. Only the Dimensia Plus web site has agreed to put a direct link to my site, I find this also very sad.

    My site is made to highlight the problems AND for people to contact me in order for them to download a blank petition get family and friends to ad signatures and comments NOT address details.

    Please don't think I have an alteria motive I just want to get the message out.

    Nada you will be pleased to know I am now stepping back of my little soap-box
     
  13. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Shaky,
    If a blank form can be downloaded, and addresses don't need to be given, then it seems to me that you are doing as Nada asked. Don't get off your soapbox, keep encouraging us all to stand on one beside you!
    Amy
     
  14. Shaky

    Shaky Registered User

    May 10, 2004
    36
    Dudley, West Midlands
    reply for Noelphobic

    <<Has your mum been assessed as needing nursing care, in which case which level is she on, or have they decided that she now just needs personal and social care?>>

    She does need EMI nursing care BUT has now been placed at Level Two I don't even know what Level she was on under PCT funding THEY refuse me access to Mom's records, files and assessment papers!!!!

    Without graphic details we are talking about a patient with:-

    little or no coherent verbal communication, a high level of cognitive impairment, double incontinent and has no mobility, requires hoist and two carers for all transfers and wheelchair access. Needs constant supervision and meals are fed to ensure dietary intake. Remains in high risk of pressure damage and needs overlay matress and pressure cushion. Needs a total of 7 administered drugs some twice a day which control agitation and irritation with the side effects beng Alopecia. Its documented as 'severe alzheimers' on progression.

    And this is deemed 'social care' by the PCT's. You see you are a victim of the success of the care administered - Because Mom is more comfortable and controlled she is no longer considered 'at risk' or 'a problem' thus NOW fails the criteria OH BOY, let's pray we NEVER get sick!!!

    Hope this clarifies the current situation?
     
  15. Shaky

    Shaky Registered User

    May 10, 2004
    36
    Dudley, West Midlands
    reply for Elaine Maul

    She does need EMI nursing care BUT has now been placed at Level Two I don't even know what Level she was on under PCT funding THEY refuse me access to Mom's records, files and assessment papers!!!!

    Without graphic details we are talking about a patient with:-

    little or no coherent verbal communication, a high level of cognitive impairment, double incontinent and has no mobility, requires hoist and two carers for all transfers and wheelchair access. Needs constant supervision and meals are fed to ensure dietary intake. Remains in high risk of pressure damage and needs overlay matress and pressure cushion. Needs a total of 7 administered drugs some twice a day which control agitation and irritation with the side effects beng Alopecia. Its documented as 'severe alzheimers' in progression.

    And this is deemed 'social care' by the PCT's. You see you are a victim of the success of the care administered - Because Mom is more comfortable and controlled she is no longer considered 'at risk' or 'a problem' thus NOW fails the criteria OH BOY, let's pray we NEVER get sick!!!
     
  16. Michael E

    Michael E Registered User

    Apr 14, 2005
    618
    Male
    Ronda Spain
    Personal details

    Although I hate to be PC just on principle, I do have a sort of feeling that Nada may be right (she ticked me off once for posting my email address I think!) At a time like this when Alzheimer's is getting a lot of wonderful publicity there will almost inevitably be people seeing a way to profit personally out of all this. Because so many of us are emotionally involved and probably a bit stressed out as well we could be vulnerable...

    Hi Shaky, Think what you are trying to do is great - I too run a web site the address of which you can find in my personal details (which probably says a lot about me) - its in my profile. It is about lots of things but I have not put my home telephone number or address on it - Several email addresses for people to use.

    This is not because I feel in the slightest bit vulnerable but really do not want to be bothered by people calling me unless I want them to... I did for a while have a Comments Page - which was fairly easy to set up - Could that work for you?

    Good luck with it and to your mum

    love

    Michael
     
  17. Shaky

    Shaky Registered User

    May 10, 2004
    36
    Dudley, West Midlands
    Reply to Michael

    Thanks for your feedback, the web site is not for information purposes its just one way I'm trying to get the ball rolling, I have taken on board what Nada says about personal addresses and the web-site is gonna be modified as such. I have set up an exclusive email just for this so I too will be able to control who I contact / contacts me. Am also adding a downloadable petition form so people who want to get involved can (no address details are required here either). The Comments section 'on line' will now be part of the Petition too. I'm no expert on these things and I wish I didn't have to do this BUT after 4 years of hassle and the final withdrawl of funding what else is their to do but protest and appeal. I know that bad publicity will do good because this is going on to too many people but like I say in the site 'without a voice'.
     
  18. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Good for you Shaky

    I get really angry that people with drug or alcohol addictions have all their treatments paid for, but if you dare to get ill through no fault of your own and have worked hard all your life, then the system effectively takes everything you have worked for away from you.

    Kathleen
     
  19. Shaky

    Shaky Registered User

    May 10, 2004
    36
    Dudley, West Midlands
    Progress report

    I have just featured on Central News here in the Midlands and had some regional press coverage. They (ITV) came to see my Mom, spent time with me and Mom went through the issues and gave an honesty report which even featured my website address (http://www.fightthebureaucracy.org/). On the TV report they asked for comment from Sandwell PCT who stated they will call a meeting to explain to me why my Mom's care has changed, funny that, it's the same PCT who refuse to give me access to Mom's medical notes/assessments & papers and have MDT meetings behind my back . I've been bulldozed again!

    Re: Petitions don't work - the main reason for the petition is to raise awareness which the above would seem to verify! Especially on the back of such media exposure this year so far - WE ALL should ride on the back of this increasing public awareness, like the lottery says 'IT COULD BE YOU'

    WE ALL need to be SINGING from the same hymn sheet, pressure can be applied if networked across the Country AND in harmony
     
  20. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Shakey
    don't hold your breath with the TV coverage.
    You may recall that I was on BBC Midlands today talking about the lot of a carer.
    It caused a stir at the time but nothing since.
    Norman
     

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