1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Carer Campaigning On Continuing Care.

Discussion in 'Dementia-related news and campaigns' started by Stephen Johnson, May 3, 2007.

  1. Hi,

    Have managed to get on to the front page of Carers UK (the voice of carers) website. It has a link to the petition and my website, which in turn has links to www.************ http://groups.msn.com/Freenursingcareinformation/messages.msnw and the Alzheimer's Society.

    Every little helps.

    The front page link: http://www.carersuk.org/Home and the article link: http://www.carersuk.org/Getinvolved/EqualPartners/Carersinaction/1178117400

    Carer campaigning on continuing care

    01 May 2007

    Stephen Johnson carers for his brother Rod who is profoundly disabled and has been battling to get the NHS to pay for his continuing care needs for several years. He talks about his fight and why carers need to vote with their feet.

    "About 2 years ago, my brother Rod had a severe brain haemorrhage. He was discharged from hospital and admitted to a nursing home. The PCT has refused to pay for his care and so we face having to pay for his place at a private nursing home for the forseeable future.

    Rod has been in the nursing home for eight months now and is paralysed on his left side. He is on approximately 19 medications, yet the PCT are arguing that he does not meet their criteria. I find this astounding as the law says that if you need a lot of low-level nursing youcould qualify for continuing care,even if your situation is stable”. No nursing home would take my brother because of his nursing needs.

    I refused to take this lying down and wrote a letter of complaint to the PCT and have been challenging them ever since. Rod's case is currently waiting for a Panel Review.

    I've started a campaign to highlight the apalling way that the continuing care criteria are being abused leaving families like mine, in desperate situations. I've written seven letters to local MPs, I've started a campaign and I have my own website and a newsletter - in which Luke Clements, [a community care lawyer and longtime supporter of Carers UK] has written:

    'What is astonishing is the across-the-board breaking of the law in relation to the social care rights ofvulnerable people, not just by the NHS but also by social services. ...this is a group of people that don't complain because they are in such terrible straights. people's homes and savings are being put at risk and also they're being caused enormous anxiety at an acute period of their lives. It's outrageous and a profound injustice".

    I've also enlisted high-profile campaigners in the legal and trade union fields - such as Luke Clements and Belddyn Hancock who won compensation for the miners in South Wales.

    Over 20 pieces have appeared in the press - we were the instigators of the Sunday Express 'Justice for our Elderly' campaign. We also had our story featured on Granada Television.

    We've also got a petition calling for the Government to fund long-term care on the Number 10 Website - its got over 1800 signatures! http://petitions.pm.gov.uk/Continuing-Care/

    My advice to carers thinking about campaigning? Just do it! As long as you've got right on your side, and evidence from Doctors, health professionals etc is very powerful, what can they do to you?

    Get your facts straight, make sure you know your rights, but then go for it, otherwise nothing will get done."

    For more information about Stephen's campaign on continuing care go to: www.continuingcarecampaign.info

    Have you had continuing care turned down wrongly? If you feel you've been a victim of the unfair implementation of the law, contact us: equalpartners@carersuk.org

    Kind Regards,

    Stephen (Johnson).

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