"patient still at home" advice

updated 0800 Thursday 16th June 2005

from Robin: the following, with permission of Derek Cole and the family concerned, are extracts from emails exchanged which may help those in a similar situation, where the patient is still living in their own home, maybe considering moving to a care home, but wishing the NHS to provide 100% funding. I have deleted material which is not needed for this purpose of providing advice to families in similar situations, and you will see deletions as "...". I would like to take this opportunity to thank the family for permission to repeat this information here.

Robin Lovelock, June 2005.

information from family

My situation is slightly different because my father is not in hospital but I am caring for him at his home. I am waiting for him to undergo a multidisciplinary assessment with a view to nhs continuing care. I am aware that this will be refused, so I am trying to look ahead now.

My father is now totally deaf and has dementia. The only contact he has had with a mental health doctor was a 20 minute visit to his home in May 2004 who said he had moderate dementia, prescribed anti-depressants, and requested he visit the local day hospital for further tests, unfortunately dad refused and we couldn't get him to attend. With the help of my daughter, I have been caring for him in his own home for more than a year now - three visits plus per day. He has has deteriorated and has a strong tendency to wander, so I now keep his door locked following a couple of incidents where he had fallen in the street and been admitted to outpatients. ...

This incident prompted me to phone my local primary care trust to ask for a nhs continuing care assessment. My request was ignored and I was referred to the adult care services who advised me to contact his GP. His GP contacted our local EMI unit who sent a nurse and a social worker to visit my father and I at his home. The nurse advised me that my father had moderate/severe dementia and nothing could be done. The social worker (who incidentally thought the system was fair) said my father would "sooner or later have to be placed in a residential home" at a cost of around 600 per week payable by him. I have had to firmly insist on a multidisciplinary assessment and I have refused a means test. I have also made it clear that I will not consent to my father's admission to a care home which is not secure.

I wrote to my local MP, ..... who advised me that "the funding arrangements surrounding long term care are hugely complex". He agreed that my father should be given a multidisciplinary assessment and that I have a right to appeal if not satisfied.....

I would like to continue to care for dad at home because I think a move would be awful for him. He knows myself and my daughter but is very confused, starting to become incontinent, cannot hear and making very little sense, so I have to try to weigh up what is best.

advice from Derek

In my opinion, Coughlan clearly covers your father. The problem is enforcing the law.

You are entitled BY LAW to an assessment. Write to Social Services say that you want an assessment of your father's needs and also yours as a Carer under the NHS and Community Care Act 1990 Section 47(1) and the decision in R v Bristol City Council ex p Penfold [1998] 1CCLR 315'

Quote to Social Services the Disability Alliance Handbook 2005-6 Chapter 25-3 'Getting an assessment of your needs.'

QUOTE If you have difficulty managing at home because of age, illness or disability, you can ask for an assessment of your needs. If it is apparent to the local authority that you might have a need for services, you should not have to ask for it. However, it is not only disabled people who can get a local authority assessment. ...............The form your assessment takes will largely depend upon the complexity of your needs. However, even if the local authority is unlikely to provide a service because of its resource constraints, you should not be denied an assessment. R v Bristol City Council ex p Penfold [1998] 1CCLR 315'

........The assessment result - You should be informed in writing of the result of your assessment and eligibility for services and given a copy of your care plan. If you are not given a written result, you should ask for one. If your needs are urgent, services can be provided before an assessment, which should then be carried out as soon as possible. Unhappy with the result? - If you are refused an assessment, or feel it has not taken account of your needs, or there is a delay in carrying it out, you can use the complaints procedure (or seek legal advice if it is very urgent) - see 7 below. In England and Wales, practice guidance to Fair Access to Care Services makes it clear that the carrying out and completion of a community care assessment should not be contingent on whether or not you can pay for care services, be they provided in a care home or your own home. With respect to services in your own home, a local authority should arrange those services irrespective of resources or capacity, if that is what you are assessed as needing.

Carers can request that an assessment of their ability to continue providing care be carried out at the same time as the person for whom they are caring is assessed for services. The assessment of the carer should be taken into consideration in the decisions made as a result of the disabled person's assessment. New legislation from April 2005 requires local authorities in England to inform carers of their rights to an assessment and to promote equality of opportunity for carers (Carers (Equal Opportunities) Act 2004). ......... Carers ........also have a right to be assessed independently. In England and Wales, a carer's assessment may result in services being provided to the person cared for, or additionally, the carer may receive services in their own right. They can choose to receive a direct payment for services they are assessed as needing (see Chapter 26(4)). Local authorities should now be setting up voucher schemes to help carers access short-term breaks. ....... NHS and Community Care Act 1990 Section 47(1)

If care is provided, we expect the NHS to meet their obligations and pay for that care.