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Living hell to living well

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Kurt Barling | 17:09 UK time, Monday, 8 November 2010

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There can be few more traumatic family issues to deal with than trying to manage the slow decline of an elderly relative?

Many families struggle to talk about it and when the end of life approaches providing care which enables a dignified death can be overwhelming.

Sandra Goodhall's mother was 83 when she died in July. She says her mother enjoyed life to the full, but during the last years she did so with increasingly debilitating dementia, cancer and emphysema.

The strain of managing these illnesses, as her mother became less able to deal with everyday issues, placed an enormous strain on the family carers.

At times the bureaucratic responses of the health and social care agencies exacerbates the helplessness many carers feel.

Housing 21 is a housing and care association which delivers accommodation for older people. It has also joined forces with the London Borough of Westminster to deliver dementia services to older residents.

Some of these services are organised around a day centre to give dementia sufferers greater variety in their lives and often desperately needed respite for their family carers.

With funding from The King's Fund, the health care think tank, Housing 21 has also been running a pilot scheme where a dementia and end of life nursing specialist works with families.

The objective of Nurse Morejoy Saineti has been to offer practical training and advice in the home to families and carers. This has often meant that simple issues have been dealt with early and avoided the need for a referral to hospital.

Secondly, the role has been an attempt to break down the culture which means dementia care falls between the cracks of social services and the NHS.

The key is to try and coordinate all the different services required to deliver what the patient needs in order to stay out of hospital and in the home.

The other key role of Morejoy has been to try and bring greater awareness to carers of what deterioration they can expect in a dementia patient.

And the difficult business of talking through and dealing with the preparations for what can often be a traumatic decline and death.

Sandra Goodhall told me the most effective support from Morejoy came from her ability to shoulder much of the administrative burden. This enabled her to step back and ensure the mother-daughter relationship could be restored; a huge stress reliever.

Of course we live in difficult financial times and one of the objectives of the pilot scheme has been to see if coordinating services could deliver better care whilst at the same time reducing duplication and cost.

Lee Sims, who manages Housing 21's dementia centre in Westminster, says an early evaluation of the 18 month long pilot scheme has shown cost savings coming from avoidance of hospital referrals and the lowering of demands for social care services in the home.

The scheme claims to have made effective savings of around a quarter of a million pounds.

That's one housing provider using just one specialist nurse in this way. With greater health care demands for the elderly, inevitable as we increasingly live longer, blue sky thinking like this could prove crucial to preserving services which are traditionally vulnerable to cuts in public expenditure.

For families like the Goodhalls though the measure of success of the scheme is slightly more practical, dare I say meaningful?

It has meant dozens of carers have been able to maintain a more dignified end for their relative.


  • Comment number 1.

    This comment was removed because the moderators found it broke the house rules. Explain.

  • Comment number 2.

    It is a pity that some of Housing 21's generic carers are not featured on here to give a true picture of the care delivered by some of them. My father has experienced carers not turnng up to give care, missed medication and meals, clothes not changed for weeks, lack of communication and documentation...... and office staff unable to offer any information on a complaint's procedure.

    Where is the CQC in this instance?

    Very sad!


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