Cancer in Scotland: Action for Change:
A guide to securing access to information
02.
CANCER INFORMATION
SCOTTISH EXECUTIVE HEALTH DEPARTMENT POLICIES, NHSSCOTLAND PATIENT INFORMATION INITIATIVES AND THE VOLUNTARY SECTOR INTERFACE
A Patient Information Sub-group of the Scottish Cancer Group was established in January 2002 with a remit 'To prepare an action plan including milestones and targets to secure better access to information needed by people with cancer and their families throughout the cancer journey.'
Since the sub-group first met in January 2002 a number of publications and initiatives have had significant impact on the scope of its work. So much is being taken forward as a result of subsequent Scottish Executive and other national strategies that it was felt, rather than produce a separate cancer information strategy, a distillation of work already published and underway will provide a useful tool. NHS Boards and Regional Cancer Advisory Groups can use this publication to determine whether local patient information strategies meet the needs of people affected by cancer. The wider strategic picture is described below.
Our National Health: A plan for action, a plan for change, published in December 2000 recognised that, "Better information and better communication can significantly reduce worry and anxiety but, patients and their families are often unable either to access information or receive the support they need to gain most benefit from it. This situation must be addressed - we will set up an Information Task Group to develop better access to the information that cancer patients and their families need."
The publication of Cancer in Scotland: Action for Change (CIS) in July 2001 signalled a renewed drive to tackle cancer and its causes. Building on the pledges identified in Towards a Healthier Scotland and Our National Health the strategy identified a wide range of actions necessary in order to prevent cancers whenever possible, to detect tumours earlier and to improve treatment and care for people with cancer in Scotland.
Cancer in Scotland Chapter 5 states, "Patients and their carers ... must be provided with the information they need when they need it ... there is ample evidence to support the need for healthcare professionals to communicate more effectively if we are to improve the patient's journey between and across different care settings."
The Patient Focus and Public Involvement (PFPI) framework was published in December 2001 to help achieve many of the patient focus aims set out in Our National Health and help put the patient at the centre of service delivery.
Patient Information is one of the key themes of this policy. It deals with the generic issues surrounding the quality, accessibility and future developments of patient information. The provision of cancer information is therefore integral to this generic theme.
This Patient Information initiative aims to raise the quality and widen the range of patient information and improve access to it. This Initiative will:
(1) Develop and implement a patient information quality assurance framework.
As part of the Information Strategy the Health Services Research Unit (HSRU) Aberdeen, has produced guidance to support the development of quality-assured patient information (methodology available at www.abdn.ac.uk/hsru/guide/hti ).
To test the methodology the HSRU have developed three patient information leaflets prepared in a patient-friendly format based on the best research evidence available, in consultation with health professionals, consumer representatives and users of services.
(2) Involve and engage with other sources of expertise such as expert patients.
(3) Make information accessible and available in a variety of formats.
(4) Link to ongoing and future developments (e.g. NHS24 on-line).
NHS24 (a Special Health Board) was established to provide a 24-hour direct telephone access advice service to the public (via one rate phone call) on health or healthcare services; assessment of symptoms by a trained nurse and, if appropriate, direct access to the service they need.
NHS24 services are currently available in Grampian and Greater Glasgow NHS Board areas, and roll-out across the whole of Scotland is planned throughout 2003.
Designed to Care (1997) tasked NHS Boards and Trusts with appointing an executive team member with responsibility for extending patient and public involvement in the NHS. Designated Directors are now co-ordinating work across their area on the development of local information policies and strategies.
They are also working with the Involving People Team to develop the performance indicators for Section 5 of the Performance Assessment Framework (PAF). Included in this will be indicators dealing with the design, development and evaluation of patient information.
The Scottish Executive Fair for All strategy draws out key themes and recommendations for improving the health and access to services of ethnic minority groups and the wider community in Scotland. The principles of the Fair for All strategy will be rolled out to ensure that other excluded groups are heard at all levels. An Inclusion Manager has been appointed to act as a focal point for the Fair for All agenda and explore how its principles can be applied to other equality issues.
A National Resource Centre for Ethnic Minority Health, supported by the Scottish Executive, has been operational since summer 2002. The Centre aims to help NHSScotland deliver a culturally competent service.
Patient Focus and Public Involvement Initiatives include: |
> A Patient Information Initiative and network of patient information specialist is being established throughout NHSScotland. |
> A Patient Information strategy is being developed to provide guidance and support in the development of quality assured patient information. |
> Designated Directors will ensure that PFPI principles are included within local information/communication strategies on an ongoing basis as part of the development of the local sustainable framework for PFPI. |
NHS QUALITY IMPROVEMENT SCOTLAND (NHS QIS) INCORPORATING THE CLINICAL STANDARDS BOARD FOR SCOTLAND (CSBS)
The CSBS was established as a Special Health Board on 1 April 1999 with responsibility for developing and running a national system of quality assurance and accreditation of clinical services with the aim of promoting public confidence in NHSScotland. On 1 January 2003 CSBS became part of the new Special Health Board NHS Quality Improvement Scotland (NHS QIS) established to integrate Scotland's clinical effectiveness organisations and their work programmes.
In 2001 all NHSScotland Trusts, the three Island NHS Boards, the State Hospital Board and the Scottish Ambulance Service were visited by CSBS teams including healthcare professionals and members of the public, to assess performance against published cancer services and generic clinical governance standards (CSBS 2001). Reports were published in 2002 providing the first comprehensive national overview of work under way to improve the quality of clinical care in Scotland and report on performance against standards including examples of local initiatives.
CSBS reports feed into the NHSScotland Performance Assessment Framework (PAF) that forms the mandatory core of the Executive's annual review of NHSScotland's performance. The reports also provide a stimulus for continuous performance improvement.
There are a number of local initiatives highlighted in Generic Clinical Governance Reports from first-round visits, some are listed below. Second-round visits have demonstrated further improvements in these initiatives. |
Ayrshire & Arran Acute Hospitals Trust | All patient information is reviewed as part of a two-year rolling programme and a review group has been set up to standardise the format of the information. The health promotion department produces a Patient Information Resource Index, which is available in all areas within the Trust. Link nurses, patients and their carer can easily access the department. |
Yorkhill NHS Trust | The children's hospital has a Family Information Centre, which contains a wide range of patient information for people to access. The centre is staffed by three family support workers. |
CSBS Patient Information Criteria |
1. The organisation has a strategy to meet the information needs of patients, relatives and carers. |
2. Patients (and, with their consent, carers) are provided with appropriate information materials about their condition at diagnosis which are evidence-based, identify treatment options, possible outcomes, risks, possible side-effects, and sources of further information. Where an explanation is required one is given. |
3. Information materials are jargon-free and easily understood, presented in a variety of formats and they are explained to patients as appropriate. Patients are involved in their preparation and they are subject to periodic review and updating. |
4. Patients have access to their health records as allowed for in legislation. |
5. The confidentiality and security of health records comply with relevant legislation and published guidance. |
EFFECTIVE COMMUNICATION
Communication with people affected by cancer is complex. All staff concerned with patient care should be aware of potential problems with communication and be aware that patients often find it difficult to take in information given during consultations, especially just after hearing a diagnosis of cancer or other "bad news".
CSBS Patient/Staff Communication Criteria |
1. All patients are informed of the names and designations of the key healthcare professionals responsible for managing their care and how to contact them. |
2. There is effective two-way communication with patients, as well as with their carers, that is regularly monitored. |
3. A written policy on patient advocacy is in place and its implementation monitored. |
CSBS Cancer Specific Standards - Essential Criteria for Communication and Information Sharing |
1. Patients with cancer receive information about their illness at all stages. The treatment options are discussed and decisions taken in partnership with the patient. |
2. Written information leaflets (including information about local support groups) are available for all patients (including those with disabilities and those requiring translation services). |
3. The breaking of bad news is handled in a sensitive manner. |
4. Private areas are available in clinics and wards for communicating information. |
Interdepartmental communication is also an important aspect of access to, and transfer of, information between the multidisciplinary team across the patient pathway. This should be addressed as evidence suggests that this type of communication is often not well understood and/or planned for.
Communication and Information Sharing |
CSBS Breast Cancer Standard Statement |
Patients are fully informed of the different options for treatment and involved in decision making to the extent they wish. Clear lines of communication are maintained between the staff in the breast unit and the primary care team. |
CSBS standards for Breast, Ovarian, Lung and Colorectal cancer services also recognise that effective interdepartmental communication and between primary and acute care is essential at referral to ensure patients are referred to the right place without unnecessary delay.
Some local initiatives highlighted in National Overview Cancer Services CSBS Reports in 2002 |
Dumfries & Galloway | Dumfries & Galloway Royal Infirmary is in the process of developing a colorectal cancer website to provide patients with online access to information about colorectal cancer and details of the Dumfries & Galloway Royal Infirmary colorectal cancer service. For more information contact the Colorectal Nurse Specialist on 01387 241380. |
Forth Valley | The Trust makes use of the National Interpreting Service which is accessible on a 24-hour basis. Communication in 140 languages is readily available at www.languageline.co.uk The local council also produces a guide on barrier free communication with regard to language and disability |
Glasgow (South) | The Southern General Hospital, Glasgow has a staff database which provides details of those members of staff who are able to provide a translation service should the need arise. |
Glasgow (North) | A comprehensive protocol for the breaking of bad news has been developed in North Glasgow University Hospitals NHS Trust. This includes practical advice on preparing patients to receive bad news, assessment of patient knowledge, finding out how much a patient wants to know, sharing information and how to respond to patients' statements and emotions. |
Grampian | Aberdeen Royal Infirmary also has a walk-in information centre within the surgical breast unit. For more information contact 01224 552211. |
Lothian | Patients in and around Edinburgh have access to 'Maggie's Centre' at the Western General Hospital. This provides a walk-in information centre as well as support services. More such centres are planned. More information available at www.maggies.ed.ac.uk |
Lothian | There is a Trust standard, Sharing Difficult Information with Patients and Relatives and a guideline to accompany the standard is available. A nurse is always present during the breaking of bad news and this is an important link which assists the ongoing support the nurses provide to patients. For more information contact the Co-ordinator, Palliative Care Service, Royal Infirmary of Edinburgh on 0131 536 1735. |
Glasgow (North) | Stobhill Hospital Glasgow runs a dedicated clinic for breaking bad news, which is attended by both the Consultant and Clinical Nurse Specialist. Stobhill Hospital also gives all patients who are receiving radiotherapy an information folder. This contains information about patient regimes, contact telephone numbers and what to do with each drug. For more information contact Nurse Specialist on 0141 201 3625. |
South East Scotland Cancer Network (SCAN) | The SCAN Cancer Information Network project is designed to improve access to quality-assured, locally relevant information for people affected by cancer in Lothian, Borders, Fife and Dumfries & Galloway. For more information contact the Project Manager on 0131 536 9308. |
Tayside | There are high quality, locally-produced, patient information leaflets on a range of topics relevant to colorectal cancer patients such as diet, investigations, high dependency unit and chemotherapy in use. These have been produced according to a Trust policy and are evaluated by patients before final production. Leaflets are reviewed annually to ensure that the information they contain is up-to-date. |
VOLUNTARY SECTOR
The voluntary sector has a broad and diverse membership with well over 1,000 organisations active in improving health, tackling health inequalities and providing health and social care. Many thousands of paid staff and volunteers work with cancer charities and hospices to improve the care of people affected by cancer.
Information provision has been a major driver for some sections of the voluntary sector. Most people with cancer and their carers want full information about their condition and its effect on their lives. When patients understand their illness, they are more likely to be able to act as partners in the decision making about their care. Health services should fully involve the voluntary sector as partners in providing information and support to people affected by cancer, building on the expertise already in place.
Many patients prefer to get information in their own time, and at their own pace. This is happening already:
CancerBACUP provides high quality and up-to-date information, practical advice and support through its UK information service. In the last year, the cancer information specialist nurses answered more than 53,000 enquiries by telephone, e-mail and face to face from people across the UK affected by cancer; over 250,000 booklets and factsheets were distributed free, and the CancerBACUP website was visited by up to 120,000 people a month. CancerBACUP's 60 booklets and over 130 factsheets are regularly reviewed and updated by some of the country's top cancer specialists, with input from nurses, patients and carers.
DIPEx is a website that allows patients, their carers, family and friends as well as health professionals to access both written narrative and video clips of patient experiences of coping with cancer. Supporters include NHSDirect, Macmillan and CancerBACUP.
Macmillan Cancer Relief operates a helpline to signpost callers to the most appropriate sources of help. Macmillan can, through their Information Consultancy Programme, help NHS Boards, Trusts and health professionals with their information needs analysis, strategy, and options for development. This could include a Macmillan Information Resource. Good practice documents on information materials management produced by Macmillan are listed in Annex 4.
Other organisations including Maggie's Centres are involved in several local initiatives and it is important that their provision is fully integrated with the local strategy and planned appropriately to provide the maximum benefit for patients.
CSBS identified a variety of strengths and challenges for NHSScotland as well as examples of local initiatives. Some local initiatives are listed below and are intended to be used as stimuli/contact point for action elsewhere and to avoid duplication of effort across NHSScotland.