Stage in Pathway

Breast Cancer Patient Information Pathway

About the pathway

This information pathway is for those who provide information to people affected by breast cancer.

It is an agreed set of written resources, set against an agreed set of stages within the cancer journey. The cancer journey does not have a start point and an end point, but is individual to each patient/carer. When assigning information themes to the various stages of the pathway, the group considered the earliest point at which the information might be useful for the patient/carer. This does not preclude the healthcare professional from using their judgement to tailor information provision to the individual needs of their patient/carer.

Information providers will recognise that it may be necessary to re-offer patients information because their circumstances have changed or because they may have previously declined to accept information.

Pathways are not meant to replace or undermine the skill and knowledge of information providers but are a tool to enable an equitable level of provision across the region. They can help you identify and quickly obtain regionally agreed information resources to meet your patients’ individual needs in a timely way. They should prove useful for coordinating provision within and across organisational boundaries.

The resources have been identified as offering clear, accurate and well written information. They should be used to complement verbal information rather than replace it. The pathway is not an exhaustive list of all possible information that a patient/carer could need. It does not preclude you from offering your patient further information but enables a shared understanding of an agreed minimum standard of provision.

Nb: Use of the information pathway needs to be compatible with the consent process.

Some work is still in progress to develop resources where a need has been identified. The pathway should be considered a dynamic tool that can be developed further to suit the needs of those using it.

Using the pathway

By making it easy to print and ordering printed copies from within one document, it is hoped that implementing the information pathway will be as easy as possible.

How the information pathway is laid out:

Stage in the cancer journey / Some stages are distinct ‘events’ following on from each other and some longer-term e.g. from diagnosis onwards.
Information themes / These are the various information needs that were identified by patients, carers and healthcare professionals.
Resources / 2  These are agreed resources.
For many of them, you are able to download them from the web - the resource title will be blue and underlined. If a pdf is not available, a weblink to the resource’s content is provided 8.
Where you can order printed copies, click on the publisher name to go to the order form online.
Where a topic has been identified that does not necessarily need backed up with written information, this has still been featured on the pathway.
Resources marked with (T) are those where translations are available. This is an area for further development to improve access to resources featured on the pathway.
How to order/access / Most resources can be accessed using the links provided in ‘Resources’ and ‘Publisher’. However, some have to be ordered by telephone/email so these details are provided here.
Core? / This column indicates the agreed status of the resource within the information pathway.
§  ‘Yes’ means the item is deemed core for all patients and should be offered to them all.
§  ‘As needed’ means that the item may only be appropriate for some patients. For all of those who it is appropriate for, the item should be offered.
§  ‘Signpost’ is where it has been agreed that patients/carers should be assisted in ordering a copy of the resource for themselves. This may be because they are not needed often or because the resource is costly, which can lead to them being ‘stockpiled’ rather than being kept up-to-date as revised versions become available.
‘Choice’ is where there are several resources that may be suitable. This choice is for the professional to use to establish what best suits their patient/carer.
If core, first responsibility / This column recognises that there are particular roles that will be best placed to offer the patient/carer that information at that earliest appropriate time. As the responsibility for offering information can span several roles, using ‘First’ means that others should feel comfortable re-offering that information if appropriate.
Current version / This enables you to see the current version of a resource. The pathway will be maintained on the NICaN website where this will be managed. (This section will be developed once all resources are agreed).

Advanced cancer

An information pathway for Advanced Cancer is being developed. This will include information that is not tumour-site specific. After its development, the need for additional tumour-site specific information will be considered.

Pathway version

This information pathway will be maintained on the NICaN website. This will enable those using it to see most of the featured resources online and to be confident that they are using the most up-to-date version. It can host prompts about new materials that professionals wish to share knowledge of. These can then be considered for formal inclusion when the pathway is reviewed.

Recording information provision and uptake

A standard for patient information provision has been included within the Cancer Services Framework. Measuring performance is likely to mean that it is necessary to record information provision and uptake.

This recording should recognise that patients may decline to accept information and could potentially help ensure patients are not provided duplicate information.

Acknowledgements

This work would not have been possible without involvement from:

§  Breast care nurses from HSCNI Trusts and the Ulster Independent Clinic

§  Patients and carers, in particular Ms Mary Brown, Ms Mairead Duffy, Ms Elvira Lowe and people who attended the support groups visited during this work (Cancer Lifeline and Ulster Cancer Foundation)

§  Colleagues outside the working group

Consultation

§  This pathway was developed by the working group from November – May 2008.

§  It was then circulated to the regional Breast Cancer Network Group for consultation in May 2008.

§  The Regional Patient Information Forum and Regional Patient & Public Involvement Forum were consulted during June and July 2008.

§  The Breast Care Nurses were then able to pilot its use during July 2008.

Contact:

Feel free to distribute my contact details and the web address for this document to any staff who have responsibility for delivering information to patients.

If you have any problems using the pathway, please let me know immediately.

Danny Sinclair, Regional Coordinator for Patient Information, NI Cancer Network.

Email Telephone 02890 699069 ext 5665 / 07747 067 098.

STAGE
in pathway / Information
THEME / RESOURCES / How to ORDER/access / CORE? / If core, FIRST responsibility / CURRENT version
Health promotion/ cancer prevention/
early detection / Health promotion information / 2  Are you worried about Cancer?8 Cancerbackup / Order free here (bulk) / GP
2  Are you worried about Breast Cancer? 8 Cancerbackup / Order free here (bulk) / GP/Practice Nurse
2  Cancer – know the warning signs
Cancer Research UK / Order here / GP
2  Breast Screening: Your early warning system. (T) Health Promotion Agency for NI / Order contacts
/ NHSBSP – by BSU
Patient Symptoms / Signs and symptoms / 2  Breast awareness: Looking out for changes (T)
Health Promotion Agency for NI / Order contacts / GP/ NHSBCP
Information about screening
8www.screening.n-i.nhs.uk / 2  Breast Screening: Your early warning system. (T) Health Promotion Agency for NI / Order contacts
/ GP/ NHSBCP
2  Breast Screening: Satisfactory test results – what now? Health Promotion Agency for NI / Available from breast assessment clinics only. / As needed / NHSBSP – by BCN
2  Breast Screening: What to expect at your second visit. Health Promotion Agency for NI / Available from local screening centres only. / As needed / NHSBSP – by BSU
Information about GPs etc. / 2  Health and Social Care in Northern Ireland (T)
Central Services Agency / Download from here / As needed
At source of referral e.g. GP / Screening / What happens next / 2  Referral to a breast clinic
Breast Cancer Care / Order here / Yes / GP – when urgent referral
Helplines and websites / 2  Single page prompting patient to order Referral to a breast clinic booklet, and including helplines and websites. / Download and print. / Yes / GP – when urgent referral and patient is aware that cancer may be possible
For first consultation or investigation / Your clinic appointment
What to expect
How to prepare
Who you will see / Appointment invitation and local information1:
2  Clinic and hospital details (contact, map, directions)
- Advise that results may or may not be available on the day.
- Advice to consider bringing company and any male/female clinic restrictions/Chaperone policy information. / Local arrangements.
(A web page for road maps to all HPSS hospitals and maps of hospital sites is being made available on the NICaN website). / Yes / Appointments office
2  Referral to a breast clinic Breast Cancer Care / Order here / Yes / Appointments office when routine referral
STAGE
in pathway / Information
THEME / RESOURCES / How to ORDER/access / CORE? / If core, FIRST responsibility / CURRENT version
At first consultation or investigation / Advice after local anaesthetic / Local information
Or suitable example from choice
Anaesthesia explained RCOA
You and Your Anaesthetic RCOA / Download and print.
Download and print. / As needed.
When any outstanding results will be available / Written record of appointment date for any outstanding results1.
- Advice to consider bringing company to the appointment. / As needed.
Further tests / Localisation – local information or print text from Cancerhelp (Cancer Research UK) / As needed.
At and from diagnosis
Click here for Breast Problems leaflets (e.g. non-malignant) / Glossary of terms / 8  Breast Cancer Care Website Breast Cancer Care
Also available in resources marked (G) below. / 8  Online. / As needed.
About cancer and treatment options available. / 2  Resource pack (G) (Q) Breast Cancer Care / Order free here / Yes
- one from choice, as best meets patient’s need. / BCN
2  Breast cancer and you Breast Cancer Care / Order free here
2  Support for Women magazine (G)
– for post menopausal women Astrazeneca / Email Fiona.duncan@ astrazeneca.com
2  Younger women and breast cancer
Breast Cancer Care / Order free here
2  Treating breast cancer Breast Cancer Care / Order free here / Yes / BCN
Questions you might want to ask / 2  Ask about your cancer medicines Cancer Backup / Order free here (bulk) / Choice, as needed.
2  Ask about your breast cancer medicines
Breast Cancer Care / Order free here
2  The Cancer Guide Macmillan / Order free here
Potential fertility issues and IVF pre-treatment. / 8  Cancer treatment and fertility Cancer Backup / Order free here (bulk)
Or provide order form / Choice, as needed.
2  Fertility issues and breast cancer treatment
Breast Cancer Care / Order free here
Lymphoedema information.
Nb: To be guided by LNNI as it develops further3 / 2  Reducing the risk of Lymphoedema factsheet.
Breast Cancer Care / Order free here / Yes / BCN
2  Lymphoedema Your questions answered
NI Lymphoedema Support Group8 / Order by email or phone 028 90 667570. / As needed.
2  Reducing the risk of developing Lymphoedema
And other associated webpages
Lymphoedema Project Team (CAPriCORN) / Print from the web / As needed.
Reconstruction / 2  Breast Reconstruction Breast Cancer Care / Order free here / As needed. / BCN
Dietary advice / 2  To be advised by regional Dietitians group3.
Information
THEME / 2  RESOURCES / How to ORDER/access / CORE? / If core, FIRST responsibility / CURRENT version
Help and support for carers / 2  In it together Breast Cancer Care / Order free here / Yes, from choice. / BCN
2  Hello and how are you? Macmillan / Order free here
2  Signposting handbook NICaN PPI / Trusts via Lead Nurse, UIC via NICaN2 / As needed. / BCN
2  Social work information. To be developed 3 / As needed.
8  Carer’s Course information Macmillan / Order free here / As needed.
Support and information. / 2  Signposting handbook
– this includes Befriending/1-1 Support. NICaN PPI / Trusts via Lead Nurse,
UIC via NICaN2 / Yes / BCN
2  Here for you Breast Cancer Care / Order free here
2  BCNS contact information / Trust’s own arrangement / Yes / BCN
2  UCF Helpline card/leaflet Ulster Cancer Foundation / Phone 02890 663281
or email / As needed. / BCN
Talking about cancer / 2  Talking with your children Breast Cancer Care / Order free here / Choice, as needed. / BCN
2  Talking to children when an adult has cancer Macmillan
- UCF Family Support/Drama Therapist
- Mummy’s Lump – book for children Breast Cancer Care / Order free here
Phone Rachel Smith 028 9066 3281
Order only
Feelings and counselling / 2  UCF/Trust counselling Ulster Cancer Foundation
(services included within Signposting Handbook) / Phone 02890 663281
or email / As needed. / BCN
2  How to help yourself Cancer Research UK / Print from website / As needed.
2  Depression Cancer Research UK / Print from website / As needed.
Benefits and financial advice / 2  Help with the cost of cancer NI Macmillan
(services also in Signposting Handbook) / Order free here / Yes. / BCN
Working / 2  Working through cancer Macmillan / Order free here / Choice, as needed.
8  Work and Cancer Cancer Backup / Order here (£)
Or provide order form
Equality / Discrimination / 2  'YouAreNowCovered.org' leaflet
Equality Commission NI / Trusts via Lead Nurse,
or order free from ( EC Helpline 02890 890890 / Yes. / BCN
Complementary therapies / 2  Complementary therapies Breast Cancer Care / Order free here
2  Complementary therapies Action Cancer / To be confirmed. / Yes. / BCN
2  Cancer and complementary therapies8