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From: TSS (216-119-132-30.ipset12.wt.net)
Subject: Prion disease at a regional neuroscience centre: retrospective audit
Date: November 17, 2004 at 11:19 am PST

-------- Original Message --------
Subject: Prion disease at a regional neuroscience centre: retrospective audit
Date: Wed, 17 Nov 2004 10:58:13 -0600
From: "Terry S. Singeltary Sr."
Reply-To: Bovine Spongiform Encephalopathy
To: BSE-L@UNI-KARLSRUHE.DE


##################### Bovine Spongiform Encephalopathy #####################

Journal of Neurology Neurosurgery and Psychiatry 2004;75:1789-1790
© 2004 BMJ Publishing Group Ltd


Prion disease at a regional neuroscience centre: retrospective audit

A J Larner and M Doran

Cognitive Function Clinic, Walton Centre for Neurology and Neurosurgery,
Liverpool, UK

Correspondence to:
Dr Larner
Cognitive Function Clinic, Walton Centre for Neurology and Neurosurgery,
Lower Lane, Fazakerley, Liverpool, L9 7LJ, UK;
a.larner@thewaltoncentre.nhs.uk

Keywords: audit; CreutzfeldtJakob disease; palliative care; prion disease

The first 150 words of the full text
of this
article appear below.

Timely diagnosis of prion disease is vital if appropriate information
and psychosocial support is to be made available to patients and
families and appropriate arrangements made for symptomatic treatment and
provision of palliative care. For many of these issues optimal
management remains uncertain. Guidelines have been published by the
CreutzfeldtJakob disease (CJD) Support Network1 suggesting that a
"carefully co-ordinated multidisciplinary team" is required to provide a
"flexible, family-centred approach, with specialist CJD and palliative
care services", with appointment of a keyworker "as soon as possible" to
tailor appropriate response. The optimal location of the palliative care
is acknowledged to depend on individual circumstances, but it is
recognised that "acute neurology or psychiatric units cannot provide the
appropriate environment for longer term care". The guidelines explicitly
do not address general palliative nursing care issues.

Most reports on cohorts of patients with prion disease have emanated
from national referral centres. However, . . . [Full text of this
article ]

http://jnnp.bmjjournals.com/cgi/content/full/75/12/1789

Greetings list members,

FOR those professionals in the medical and nursing field, this CJD
information
and nursing care guideline the CJD support network put out is very good
to have.
The guideline was very expensive to put together and there is a charge of
$5.00 a copy, but well worth it. YOU must remember that the CJD support
network is a small charity and they do great work. I will NOT be putting
this
one online. BELOW, I have listed only the CONTENTS PAGE FYI;

Contents

SECTION 1 Background 2

Purpose of these guidelines 2
The CJD Support Network 2
The Queen's Nursing Institute 2
Acknowledgements 2

Introduction to Creutzfeldt-Jakob disease

SECTION 2

Types of CJD 3

Presentation and clinical features 4

Table 1: Types of CJD 4

Diagnosis 5

Consent for examination or treatment 5

Investigations 6

The role of the nurse 7

SECTION 3

Referral processes 8

Other members of the multidisciplinary team and

support services (see index for specific service) 9

SECTION 4 General information and guidance 13

Care co-ordination 13

The CJD care package and the CJD care fund 13

Complementary therapies 13

Continuing care guidance 14

Equipment 14

Family support 14

Health Act, 1999 partnership arrangements 14

The media 14


SECTION 5 Infection control 15

Universal precautions in hospital 16

Clinical procedures 16

Universal precautions in the home setting 17

After death 17

SECTION 6 Nursing care: a problem-solving approach

Alphabetical listing 19

Appendices

A tool for managing a new case of vCJD 30
Contacts for further information 32
References 33
Glossary and abbreviations 34

Index 35

IF anyone is interested, you can write;

Gillian Turner,
National CJD Co-ordinator,
P.O.Box 346, Market Drayton, TF9 4WN.
Telephone 01630 673993

The CJD Support Network is the leading care and support charity for all
forms of CJD. We welcome public donations to support us in our work.
Registered Charity number 1097173...


MANY THANKS to the CJD SUPPORT NETWORK...TSS

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