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Cancer in Scotland: Action for Change:
A guide to securing access to information
ANNEX 1
REFERENCES
> Bell S, Brada M, Coombes C, Miles B, Morris E, Richards M, Tritter J (1996) "Patient-Centred Cancer Services?" What Patients Say, Oxford: The National Cancer Alliance
> Building Strong Foundations - published jointly by the Scottish Executive and the Partners in Change project at Scottish Human Services Trust May 2002 - reissued in August 2002
> Clinical Standards: Lung Cancer, CSBS (2001)
> Clinical Standards: Colorectal Cancer, CSBS (2001)
> Clinical Standards: Ovarian Cancer, CSBS (2001)
> Clinical Standards: Breast Cancer, CSBS (2001)
> Clinical Standards: Generic Cancer, CSBS (2001)
> Clinical Standards Board for Scotland (2002) National Overview -
Improving Clinical Care in Scotland - Generic Clinical Governance Standards
> Clinical Standards Board for Scotland (2002)
National Overview - Ovarian Cancer Services
> Clinical Standards Board for Scotland (2002)
National Overview - Colorectal Cancer Services
> Clinical Standards Board for Scotland (2002)
National Overview - Lung Cancer Services
> Clinical Standards Board for Scotland (2002)
National Overview - Breast Cancer Services
> Information and Statistics Division - A Division of the Common Services Agency - Scottish Cancer Registry - "Cancer Facts and Figures"
www.show.scot.nhs.uk/isd/cancer/facts-figures/facts-figures.htm
> NHS Centre for Reviews and Dissemination, University of York (1997) "The Management of Colorectal Cancer", Effective Health Care, Vol 3, No 6
> NHS Centre for Reviews and Dissemination, University of York (1998) "Management of Lung Cancer" Effective Health Care, Vol 4, No 3
> Nuffield Institute for Health, University of Leeds and NHS Centre for Reviews and Dissemination, University of York (1996) "The Management of Primary Breast Cancer", Effective Health Care, Vol 2, No 6
> NHS Executive, NHS Confederation, Institute of Health Service Management (1998) "In the Public Interest". Developing a strategy for Public Participation in the NHS, NHS Executive
> Scottish Executive Health Department (2000)
Our National Health: A plan for action, a plan for change
> Scottish Executive Health Department (2001)
Cancer in Scotland: Action for change
> Scottish Executive Health Department (2001) -
Patient Focus and Public Involvement
> Scottish Executive Health Department (2002)
Fair for all- Everyone is entitled to fair access to health
> Scottish Office (1997)
Designed to care. Renewing the National Health Service in Scotland, Edinburgh: The Stationery Office
> Towards a Healthier Scotland, A White Paper on Health (1999)
ANNEX 2SCOTTISH CANCER GROUP - PATIENT INFORMATION SUB-GROUP MEMBERSHIP
Mr I Gibson | Director for Scotland Macmillan Cancer Relief and Member of the Scottish Cancer Group | Chair |
Ms L Adams | Macmillan Lead Cancer Nurse | NHS Grampian |
Ms C Campbell | Breast Care Liaison Nurse | Stobhill Hospital, North Glasgow University Hospitals NHS Trust |
Dr S Devereux | Macmillan General Practitioner | Tayside |
Mr I Dickson | Lay Member | |
Mrs B Elliot | Lay Member | |
Mrs D Hamilton | Project Manager, SCAN Cancer Information Network | South East Scotland Cancer Network |
Mrs C Horne | Tak Tent Cancer Support | Glasgow |
Ms J Inglis (to December 2002) | Patient Involvement Worker | South East Scotland Cancer Network |
Ms L Webster | Macmillan Information Radiographer and Counsellor | Beatson Oncology Centre Glasgow |
Ms J Whelan | Head of CancerBACUP Scotland | Glasgow |
Dr S Williams | Mary Thomson Research Fellow | NHS Greater Glasgow |
SCOTTISH EXECUTIVE HEALTH DEPARTMENT
Mrs J Birrell | Programme Manager, Cancer Services |
Ms G Campbell | NHS Adviser, Patient Focus and Public Involvement Team |
Mrs J Davies | Patient Focus and Public Involvement Team |
Mrs S Dunn (from October 2002) | Patient Information Project Manager |
ANNEX 3WEBSITES: The undernoted list is not exhaustive but covers a wide range of cancer patient information related and generic patient information sites.
DISCLAIMER: The Scottish Executive Health Department is in no way responsible for these sites and cannot guarantee the accuracy or currency of any of the material you may find there.
Cancer Research UK
www.cancerresearchuk.org | CancerHelp UK is a free information service about cancer and cancer care, written especially for patients and their families developed by Cancer Research UK. There is information on specific cancers, treatment information, advice on living with cancer and a link to a clinical trials database. |
CancerBACUP
www.cancerbacup.org.uk | CancerBACUP aims to help people live with cancer by providing information and emotional support for patients, their families and health professionals. It is recognised as the foremost provider of cancer information in the United Kingdom. The website includes over 2000 pages of information. |
Cancer in Scotland website
www.show.scot.nhs.uk/sehd/cancerinscotland | The
Cancer in Scotland website was launched as a result of publication of Scotland's Cancer Plan -
Cancer in Scotland: Action for change to provide detail of the work ongoing to implement the cancer plan. |
Centre for Health Information Quality
www.chiq.org | This site is dedicated to ensuring that all patient information is clear and evidence-based. |
DIPEx
www.dipex.org | For patients who wish to learn about their disease through seeing/listening to the experiences of other patients. |
DISCERN
www.discern.org.uk | The DISCERN website is an experimental site consisting of an online version of the DISCERN instrument and handbook. The handbook is designed to help readers understand and use DISCERN effectively. |
Health Services Research Unit
www.abdn.ac.uk/public-health/hsru | The national remit of the Health Services Research Unit (HSRU) is to research the best ways to provide health care, and to train those working in the health services in research methods. They have produced three evidence-based patient information leaflets. |
HEBS
www.hebs.scot.nhs.uk | The Health Education Board for Scotland is Scotland's national agency for health education, health promotion, health advice and health information. |
Macmillan Cancer Relief
www.macmillan.org.uk | Provides an online service for people living with cancer who need access to information and support. It has information about each stage of the cancer journey through diagnosis to treatment and care. The site also offers access to local support groups, helpful organisations and links to other reliable sources of information [Information Materials Directory
www.hfht.org/macmillan ] |
NHS Quality Improvement Scotland (NHS QIS)
www.nhshealthquality.org | As of 1 January 2003, the Clinical Resource and Audit Group (CRAG), Clinical Standards Board for Scotland (CSBS), the Health Technology Board for Scotland (HTBS), Nursing & Midwifery Practice Development Unit (NMPDU) and the Scottish Health Advisory Service have joined together to form NHS Quality Improvement Scotland (NHS QIS). The website for NHS QIS is currently under development. |
Patient Focus and Public Involvement
www.show.scot.nhs.uk/involvingpeople | This website has been developed following the publication of Patient Focus and Public Involvement in December 2001. The site contains information on work taking place throughout Scotland, information on forthcoming training events and online access to the Building Strong Foundations toolkit. |
Scottish Accessible Information Forum
www.saifscotland.org.uk | SAIF aims to make information more accessible to everyone who needs it. SAIF supports the rights of disabled people and carers in having access to timely and accurate information about a wide range of services. |
Scottish Health on the Web
www.show.scot.nhs.uk/indexhelp.htm | SHOW acts as the main access point for a range of NHS Scotland services and resources. The site is structured into four different categories, these being: For NHS Staff - this section provides links to resources to assist those employed in health care in the operation of their duties. Although accessible by the public, its intended audience means that technical language and jargon is much more frequent in this section. Organisations - this section provides links to NHSScotland and related organisations through a map of Scotland divided by health board area. Publications - the publications section can be used to search for NHSScotland publications produced by the Scottish Executive and a variety of other NHS organisations. For the public - this section is for the collection of resources that are intended for direct access by the general public. Topics include health promotion, patient information, and topical health issues. |
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ANNEX 4USEFUL READING
> Macmillan Information Materials Guide; managing, selecting and producing information materials in cancer information and support services
> Macmillan Cancer Relief - A Directory of Information Materials for people with cancer 2002/2003; a selected guide to nationally published leaflets, booklets, books, audio-visual materials and websites; 3rd edition (produced in partnership with the Centre for Health Information Quality)
> Macmillan Black and Ethnic Minority Toolkit; Effective Communication with South Asian people affected by cancer 2002
> The POPPi Guide. Practicalities of producing patient information Duman M Farell C. Kings Fund 2000
> Sharing Decisions with patients: Is the information Good enough Coulter A Entwistle V Gilbert D BMJ 99; 318: 318 - 322
> Towards a global definition of patient centred care Stewart M BMJ 2001 322: 444 - 445
> After Bristol: putting patients at the centre. Commentary: patient centred care; timely, but is it practical Coulter A Dunn N BMJ 2002; 324: 648-651
> Informing Patients: an assessment of the quality of patients information materials. Coulter A, Entwistle V, Gilbert D, King's Fund 1998
> Information needs of cancer patients in West Scotland: cross sectional survey of patients' views. Meredith C, Symonds P, Webster L, Lamont D, Pyper E, Gillis CR, Fallowfield L. BMJ 2000 1996; 313: 724-726
> Cancer patients' information needs and information seeking behaviour; in depth interview study. Leydon GM, Boulton M, Moynihan C, Jones A, Mossman J, Boudioni M, McPherson K, BMJ 2000; 320: 909 - 913
> NHS Modernisation Agency Cancer Services Collaborative 'Patients Issues' and 'Possible Solutions for Change' October 2001
> How to provide information well to Bangladeshi, Chinese, Indian and Pakistani People: a good practice guide (1998) Published by National Information Forum
> Royal National Institute for the Blind: See it Right! (2001) Published by the Royal National Institute for the Blind, London
> Scottish Accessible Information Forum: Standards for Disability Information and Advice Provision in Scotland (1999) Published by Scottish Consumer Council, Glasgow
GLOSSARY
BMJ - British Medical Journal
CSBS - Clinical Standards Board for Scotland
CIS -
Cancer in Scotland: Action for change
ECCI - Electronic Clinical Communications Implementation
HEBS - Health Education Board for Scotland
HSRU - Health Service Research Unit
MCN - Managed Clinical Network
NHS - National Health Service
NHS QIS - National Health Service Quality Improvement Scotland
PAF - Performance Assessment Framework
PFPI - Patient Focus and Public Involvement
POPPi - Practicalities of producing patient information
RCAG - Regional Cancer Advisory Group
SAIF - Scottish Accessible Information Forum
SCAN - South East of Scotland Cancer Network
SEHD - Scottish Executive Health Department
SHOW - Scottish Health On the Web
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