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					BACKGROUND INFORMATION - SCAN PROJECT MANAGER

                       SCAN Roadmap for recovery
  Integrated information and communication care model to support cancer patients
        Anna Gregor, Murdina McDonald, Deborah Hamilton, Lesley Norris

Information needs and current reality
Getting cancer is like being parachuted into a foreign land without a map or a
compass. Maggie Keswick - Jencks first stated this frightening but accurate
comparison more than 15 years ago and it is still true today. Some aspects of cancer
biology and treatment do not lend themselves to accurate predictions, but there are
areas where someone in the system knows exactly what will happen, why and
hopefully when, but somehow this information is not passed on to the most important
person and that is the patient. We know from numerous surveys that access to relevant
information is one of the most important aspects for patients and carers and lack of
reliable information a real and recurrent cause of concern and worry. We also know
that patients who are prepared cope better with the stresses of a cancer diagnosis and
tend to have shorter recovery times. Providing appropriate information at the right
time is therefore a key component of quality cancer care.

The irony is that we live in an increasingly information rich age and all of us are
sinking under deluge of unsolicited and often unhelpful information delivered at an
unsuitable time.

Cancer services have made huge progress in trying to address this issue. We have
appointed information officers, created information centres, developed resources that
can be networked and shared by multidisciplinary teams working in a large
geographical area. We have appointed people with explicit responsibility for support
of patients such as CNS and service coordinators. We have developed and tested
patient held records and information passports, which have been successfully
implemented in selected areas.

So why is this not enough?
Some of these resources are by definition discreet and dependent on patients able to
secure access to them - what happens to the patient before they have their CNS or
when that CNS goes on holiday? What about those that cannot or will not go to the
information centre? Because many of these individual resources were developed
locally and by local champions, it may be difficult to ensure that the information that
they use is consistent across the increasingly complex pathway of care. We all know
how even a small and clinically meaningless discrepancy in information given to a
patient causes confusion and distress and needs extensive backtracking and
explanations to rectify. Each of these small and individually unimportant episodes
erodes the most valuable commodity that a patient should have - a trust in the service.
“Don’t you people ever talk to each other?” is a frustrated quote from a patient of
mine that will ring true to many clinical colleagues.
Cancer care is not a cookery book recipe - there will be changes dependent on patients
response and of course the whole future is uncertain. That does not mean that we
should make a visit to the X-ray department a mystery tour full of unexpected
surprises! The higher the degree of uncertainty in the “big picture” the more important
it is to get the small things right.

Patients tell us that they are well informed about side effects, treatment choices and
all other technical details. They tell us that the information gaps are particularly
noticeable at specific parts of their journey. At the beginning before the diagnosis is
made, at the end of treatment when they are trying to get their life back. This may be a
reflection of the real and legitimate clinical uncertainties – but isn’t it even more
important to give patients at this stage something that they can hang on to and rely
on?

They also tell us that they need information about other things than the technical
issues. An important information gap is in the stuff like how long will it take, can I
drive/ park, which bus do I take to that hospital, should I take someone with me,
would wearing specific clothes help? Patients think that doctors and nurses are too
busy to answer apparent trivia like these and individually health professionals may not
know the answers, so we don’t volunteer! It’s this type of information that lends itself
to a handout or a leaflet, can be made reliable and giving patients certainty in this area
will give them at least some control in this difficult time. We know how popular the
“virtual tours” are on the SCAN website!

Psychology research tells us that satisfaction is rooted in met expectations and
satisfied patients need less reassurance, less repeat visits are more able to take
responsibility for their own care. Satisfied patients also improve our own quality of
life!
.
Because we have not systematically mapped out who is giving what information and
when – we can’t be certain that it has been done. So we either repeat what has already
been provided wasting time and risking introducing inconsistencies or we assume that
someone else told Mrs Smith what will happen and why and miss the opportunity
entirely.
.
So what can we do to change this?
We need to develop a system where appropriate information transfer is built in to each
main clinical exchange. The content needs to be derived from consistent information
sources and where necessary staff delivery needs to be supported by appropriate
competencies. By creating such a system we will ensure that all patients have their
basic information needs met. This would in turn liberate time for those who need
additional support and for the quality human interactions that are the key to a good
care. If every patient knew the answers to the simple questions examples of which
have been developed with patients during the CSBS programme in 2001. As an
example we can use referral either from GP or between other clinical services.

Referral and initial assessment:
   • Why are you referring me?
   • Who are you referring me to?
   •   When will I be seen?
   •   Where?
         o What is likely to happen
   •   What test will I have and why?
         o What is likely to happen, how long will it take, can I drive, will I be
              ill?
   •   When will I get the results and who will give them to me?
   •   Where can I get more information

So as a part of the referral process the clinician will be aware of not only what clinical
information is important, but will have access to a patient information pack that will
explain the practical details and consequences of that referral. This information can be
generic and have no specific references to cancer! A classic example would be
referral to breast clinic for assessment where up to 19/20 women will not have cancer.
It is technically easy to provide linkages so that the referral and patient information
are appropriately bundled.

There is a choice of who within the appropriate team takes on the responsibility for
this information transfer. It could be the GP, or a practice nurse or the receptionist or
secretary – the important thing is that it becomes somebody’s job and that they know
what to do and how to do it. This is particularly important when we come to sensitive
and stressful parts of the journey of care such as giving diagnosis, discussing
treatment options and formulating a treatment plan both at the initial diagnosis stage
and at relapse.

How will we do it…….
SCAN has a number of the building blocks already in place.

We have a shared, consistent, relevant and current information base that describes
much of what is happening to cancer patients in our area. The active patient
programme in SCAN is working on filling the gaps and enriching this resource with
content that patients themselves want.

The network has developed service maps, which describe the main points of care on a
regional basis and identify the key people that are involved.

We have resources such as access instructions and virtual tours that address the
uncertainties about where to go and what does it look like when I get there…

We have agreed protocols of care, which describe both principles, and details of
clinical management for patients and clinicians.

Most importantly SCAN brings together the people delivering care for a specific
group of patients and can support the environment for discussion of practical issues
and resolving inconsistencies.

Our collaboration with colleagues in primary care has brought shared understanding
of what information is necessary or useful for specialist or primary care assessment.
What remains to be done………
Link it together……………and use technology to help to make it easier.

We need to develop a simple framework based on the journey of care into which we
could slot relevant information resources and ensure that they are accessible to all that
need them.

Each service needs to identify who within their multidisciplinary team will be
responsible for what. To do this will not only improve the information transfer, but
also support appropriate use of increasingly scarce specialist resources.

Amongst generalists such as in primary care we need to identify common points at
which these journeys start. Referral to breast clinic may be obvious; another would be
open access to chest radiographs in heavy smokers with worrying symptoms etc. As
well as the necessary clinical referral we can pull together relevant patient information
so that the decision to refer would generate the documentation. Primary care could
than decide who amongst their team is responsible for what - GP, practice nurse,
receptionists making the appointment.

We know which points of the cancer journey are particularly stressful or significant.
Giving the diagnosis, developing a management plan, relapse and end of active care.
These are the ones where information transfer is critical and needs a special style and
competencies. We need to start ensuring that those clinicians engaged in these critical
events are equipped, competent and supported.

What would it take……..
A will to change and consider the world from the point of view of our patients.
Clinicians working in SCAN have demonstrated their ability to do so.

Map out the common journeys of care and attach the available information. This is
already underway for breast as part of the breast review and under consideration for
lung.

Identify and fill any gaps.

Link this work to the development of CIN and the patient information projects
(Cancer Information Manager post)

For referral information – work with ECCI and SCI gateway

Target communication training programme to high risk areas.

Appoint project manager
Appendix 1
DRAFT: SCAN Breast Cancer Patient Information Pathway (1)*                                                                                    March 2006

 Prevention & Screening
 •A Million Reasons to be Breast Aware (Lothian)
                                                                                Symptoms & Tests
 •Benign Breast Lumps (Dumfries & Galloway)                                     •Referral and Tests to Diagnose the Problem: Questions and Answers about Breast
 •Nipple Disorders (Dumfries & Galloway)                                        Cancer in South East Scotland
 •Your Breast Screening Appointment Explained (Health Scotland)                 •Virtual Tour: Mammography at the Edinburgh Breast Unit
 •Breast Screening Explained (Health Scotland)                                  •Attending a Breast Clinic (Edinburgh Breast Unit)
 •A Guide to Examining Your Breasts (FAIR Website)                              •Information for Patients Attending a Breast Clinic (Borders General Hospital)
 •What Causes Breast Cancer? (CancerBACUP Website)                              •One Stop Breast Clinic Information Leaflet (Dumfries & Galloway)
 •Understanding Cancer of the Breast: Early Detection (Screening)               •Getting Cancer: by Sue MacDonald Armstrong (Patient Experience)
 (CancerBACUP Website)                                                          •Understanding Cancer of the Breast: What Are the Symptoms? (CancerBACUP
 •DIPEx: Personal Experiences of Health & Illness - (Breast Cancer              Website)
 Screening)                                                                     •Understanding Cancer of the Breast: How is it Diagnosed? (CancerBACUP
                                                                                Website)
 South East Scotland Breast Screening Programme                                 •Breast Clinic Investigations (Breast Cancer Care Website)
 •For Women in Fife, Lothian, and the Borders: SE Scotland Breast               •A Guide to Diagnosing and Treating Breast Cancer (Breast Cancer Care Website)
 Screening Centre                                                               •Diagnosis and Treatment of Breast Cancer - Information in Other Languages
 •For Women in Dumfries & Galloway: SW Scotland Breast Screening                (CancerBACUP)
 Service (Website)
 •Mobile Screening Unit Timetable (SE Scotland Breast Screening
 Programme) – Needs updating
 •Map Showing Location of South East Scotland Breast Screening Centre
                                                                                Biopsies & Staging
 Genetics & Breast Cancer
                                                                                •Staging Appointments at the Edinburgh Breast Unit
 •Cancer Genetics (Western General Hospital)
                                                                                •Understanding Cancer of the Breast: Staging and Grading of Breast Cancer
 •Cancer Genetics - How Cancer Sometimes Runs in Families
                                                                                (CancerBACUP Website)
 (CancerBACUP Website)
                                                                                •Needle Localisation Biopsy or Needle Localisation Wide Excision (Ed Breast Unit)
                                                                                •Microdochectomy (Edinburgh Breast Unit)
                                                                                •Having a Breast Lump Removed (Dumfries & Galloway)
                                                                                •Having a Wire Localisation (Dumfries & Galloway)

                                                                                •Stereotactic Fine Needle Aspiration Cytology (FNA) and Core Biopsy (SE Scotland
 Breast Cancer Services                                                         Breast Screening Centre)
                                                                                •Stereotactic Core Biopsy (SE Scotland Breast Screening Centre)
 •How To Get To Your Hospital Or Clinic
                                                                                •Ultrasound Fine Needle Aspiration (FNA) and Core Biopsy (SE Scotland Breast
 •One Stop Breast Clinic Information Leaflet (Dumfries & Galloway)
                                                                                Screening Centre)
 •Attending a Breast Clinic (Edinburgh Breast Unit)
                                                                                •Palpable Fine Needle Aspiration (FNA) and Core Biopsy (SE Scotland Breast
 •Edinburgh Breast Unit: Information for Patients
                                                                                Screening Centre)




 *Resources currently available on the SCAN Cancer Information Network (www.scan.scot.nhs.uk)
DRAFT: SCAN Breast Cancer Patient Information Pathway (2)*                                                                         March 2006

Treatment                                                                Checking Lymph Glands
•Treatment: Questions and Answers about Breast Cancer in South East      •Axillary Node Clearance (Edinburgh Breast Unit)
Scotland                                                                 •Axillary Node Sampling (Edinburgh Breast Unit)
•Understanding Cancer of the Breast: Types of Treatment (CancerBACUP
Website)                                                                 Other Surgical Procedures
•Diagnosis and Treatment of Breast Cancer - Information in Other         •Microdochectomy (Edinburgh Breast Unit)
Languages (CancerBACUP)                                                  •Total Duct Excision (Edinburgh Breast Unit)

                                                                         Coping With Recovery After Surgery
                                                                         •Early Discharge With Drain (Edinburgh Breast Unit)
                                                                         •Seromas (Edinburgh Breast Unit)
Surgery                                                                  •Living with Lymphoedema (Breast Cancer Care Website)
•Edinburgh Breast Unit: Information for Patients                         •The Lymphoedema Support Network (Website)
•Borders General Hospital: Breast Care After Surgery
•Understanding Cancer of the Breast: Surgery (CancerBACUP Website)

Wide Local Excision / Removal of a Breast Lump
•Wide Local Excision (EBU)
•Needle Localisation Biopsy or Needle Localisation Wide Excision (EBU)
                                                                         Radiotherapy
•Wide Local Excision (Lumpectomy) and Axillary Node Clearance (EBU)      •Virtual Tour: Radiotherapy Treatment for Breast Cancer at the Edinburgh Cancer
•Wide Local Excision (Lumpectomy) and Axillary Node Sampling (EBU)       Centre
•Having a Breast Lump Removed (Dumfries & Galloway)                      •Radiotherapy to the Breast Area: Patient Care Information (Edinburgh Cancer Centre)
•Having a Wire Localisation (Dumfries & Galloway)                        •Getting Cancer: by Sue MacDonald Armstrong (Patient Experience)
•Having Breast Surgery - A Wide Local Excision (Dumfries & Galloway)     •Understanding Cancer of the Breast: Radiotherapy (CancerBACUP Website)
                                                                         •Radiotherapy for Breast Cancer (Breast Cancer Care Website)
Mastectomy                                                               •What Breast Cancer Patients Want from a World Class Radiotherapy Service (Breast
                                                                         Cancer Care)
•Mastectomy (Edinburgh Breast Unit)
•Mastectomy and Axillary Node Clearance (Edinburgh Breast Unit)
•Mastectomy and Axillary Node Sampling (Edinburgh Breast Unit)
•Having Breast Surgery - A Mastectomy (Dumfries & Galloway)              Chemotherapy
                                                                         •Virtual Tour: Outpatient Chemotherapy at the Western General Hospital
Breast Implant & Reconstruction                                          •Information for Breast Cancer Patients Receiving CMF Chemotherapy (Dumfries &
•Saline Breast Implants (Edinburgh Breast Unit) – Being Updated          Galloway) – Needs updating
•Silicone Breast Implants: General Information for Patients (EBU)        •Information for Breast Cancer Patients Receiving Combination Chemotherapy
•Silicone Breast Implants: Information for Patients on Discharge (EBU)   (Dumfries & Galloway) – Needs updating
•Insertion of a Tissue Expander (Edinburgh Breast Unit)                  •Understanding Cancer of the Breast: Chemotherapy (CancerBACUP Website)
•Tissue Expansion: Information for Patients (Edinburgh Breast Unit)      •Chemotherapy for Breast Cancer (Breast Cancer Care Website)
•Info on Prosthesis Fitting Procedure Following Breast Surgery (EBU)
•Breast Prosthesis (Dumfries & Galloway)
•Latissimus Dorsi Flap with an Implant for Breast Reconstruction (EBU)
•Nipple Tattoo - Information for Patients (Western General Hospital)
•Breast Reconstruction (Breast Cancer Care Website)                      Hormone Therapy
                                                                         •Understanding Cancer of the Breast: Hormonal Therapies (CancerBACUP Website)


                                                                                                                                                      Cont…/
     DRAFT: SCAN Breast Cancer Patient Information Pathway (3)*                                                                                               March 2006



Clinical Trials                                                                          Follow Up After Treatment for Breast Cancer
                                                                                         •Understanding Cancer of the Breast: Follow-Up (CancerBACUP Website)
•Understanding Cancer of the Breast: Research - Clinical Trials
                                                                                         •Silicone Breast Implants: Information for Patients on Discharge (EBU)
(CancerBACUP Website)
                                                                                         •Breast Conservation: Discharge Info Ten Years After Surgery (EBU)
                                                                                         •Breast Conservation: Five Years After Surgery, Discharge to Mammography Only
                                                                                         (Edinburgh Breast Unit)
                                                                                         •Mastectomy: Discharge at Five Years to Mammography Only (EBU)
                                                                                         •Bilateral Mastectomy: Discharge Info Five Years After Surgery (EBU)


Finding Support and Living with Breast Cancer
•Support and Information: Questions and Answers about Breast Cancer in South East Scotland
•Breast Care Nurse Specialists: Hospital and Community Support (West Lothian)
•Reach for Recovery: Breast Cancer Support
•Breast Cancer Support Groups in Fife
•Amazons Breast Cancer Support Group for Young Women in Fife
•The Elaine Darling Breast Cancer Fund
•Support For You (Breast Cancer Care Website)
•Share Your Story (Breast Cancer Care Website)
•DIPEx: Personal Experiences of Health & Illness - (Breast Cancer)
•Breast Cancer Care (Website)

Symptoms & Side Effects                                                                          Non-medical Information & Practical Support
•Coping with Breast Pain (Edinburgh Breast Unit)                                                  e.g. travel, finance, info for specific audiences inc. carers
•Breast Pain (Mastalgia) Information Leaflet (Dumfries & Galloway)
•Living with Lymphoedema (Breast Cancer Care Website)
•The Lymphoedema Support Network (Website)



General Information About Breast Cancer
•Overview of Breast Cancer in South East Scotland
•Breast Cancer Care (Website)
•Breast Cancer Information Centre (CancerBACUP Website)
•Questions and Answers about Breast Cancer (Cancer Research UK Website)
•Breast Cancer (Cancer Research UK Website)
•Breakthrough Breast Cancer (Website)
•Breast Cancer Campaign (Website)
•Breast Care Campaign (Website)

•Breast Cancer In the News (Breast Cancer Care Website)
•Chat Forum (Breast Cancer Care Website)
DRAFT: SCAN Lung Cancer Patient Information Pathway                                                                                           April

 Prevention & Screening                                                           Treatment
 •Smoke Free: A Self Help Guide for People Thinking About Stopping Smoking
 (Lothian)                                                                        •Overview of Treatment for Lung Cancer in South East Scotland (SCAN Lung
 •Smoking Cessation Services (West Lothian Healthcare NHS Trust)                  Cancer Group)
 •ASH Scotland (Website)                                                          •Admission to Chest Unit (Victoria Hospital)
 •Roy Castle Lung Cancer Foundation (Website)                                     •Ward 4, Western General Hospital: An Information Leaflet for You and Your
 •Understanding Cancer of the Lung: What Causes Lung Cancer?                      Family
 (CancerBACUP Website)                                                            •Treatment Decisions and Planning: Questions and Answers from the Clinical
                                                                                  Psychology Team
                                                                                  •During Treatment: Questions and Answers from the Clinical Psychology Team
                                                                                  •Understanding Cancer of the Lung: What Types of Treatment Are Used?
 Symptoms & Tests                                                                 (CancerBACUP Website)
 •Overview of How Lung Cancer is Diagnosed in South East Scotland (SCAN           •Understanding Cancer of the Lung: Follow-Up (CancerBACUP Website)
 Lung Cancer Group)
 •Symptoms and Diagnosis: Questions and Answers from the Clinical
 Psychology Team
 •Common Signs & Symptoms of Lung Cancer (Roy Castle Website)                     Surgery
 •Understanding Cancer of the Lung: How is it Diagnosed? (CancerBACUP             •Lobectomy/Pneumonectomy (Royal Infirmary of Edinburgh)
 Website)                                                                         •V.I.T.A. - Video Imaged Thorascopic Assessment (Royal Infirmary of
 •Types of Lung Cancer (Roy Castle Website)                                       Edinburgh)
                                                                                  •Mediastinoscopy (Royal Infirmary of Edinburgh)
                                                                                  •Understanding Cancer of the Lung: Surgery (CancerBACUP Website)
 Specific Tests to Examine the Lungs
 •Your Guide to Having a Bronchoscopy in South East Scotland
 •CT Scanning in South East Scotland: Information for Patients
 •Attending a Respiratory Medicine Clinic (Clinic D) (Western General Hospital)
 •Respiratory Function Service (Western General Hospital)                         Radiotherapy
 •Mediastinoscopy (Royal Infirmary of Edinburgh)                                  •Virtual Tour: Radiotherapy Treatment for Lung Cancer at the Edinburgh Cancer
 •V.I.T.A. - Video Imaged Thorascopic Assessment (Royal Infirmary of              Centre
 Edinburgh)                                                                       •Understanding Cancer of the Lung: Radiotherapy (CancerBACUP Website)
 •Admission to Chest Unit (Victoria Hospital)                                     •CHART (Continuous, Hyperfractionated, Accelerated, Radiotherapy): A Guide
 •Virtual Radiology Department: Going for a... (Website)                          for Patients
 •Tests for Lung Cancer (Roy Castle Website)                                      •Palliative Radiotherapy for Lung Cancer
                                                                                  •Radiotherapy for Brain Metastases
                                                                                  •Radiotherapy for Bone Metastases

 Lung Cancer Services
 •Information About Local Services for People With Lung Cancer (SE Scotland)
 •Breathlessness Support Clinic (West Lothian)                                    SVC Stents
 •Borders Breathlessness Clinic: Information for Patients                         •Superior Vena Cava (SVC) Stents: An Information Leaflet for Patients
 •Living with Breathlessness Programme: Information for Patients (Fife)
 •Fife Lung Cancer Services - Important Telephone Numbers
 •How To Get To Your Hospital Or Clinic

*Resources currently available on the SCAN Cancer Information Network (www.scan.scot.nhs.uk/lung)                                                         Cont…/
DRAFT: SCAN Lung Cancer Patient Information Pathway                                                                                              April

Chemotherapy                                                                    Finding Support and Living with Lung Cancer
•Virtual Tour: Outpatient Chemotherapy for Lung Cancer at the Royal Infirmary   •Information About Local Services for People With Lung Cancer (SE Scotland)
of Edinburgh                                                                    •Fife Lung Cancer Support Group
•Virtual Tour: Outpatient Chemotherapy at the Western General Hospital          •This is My Story: by Irene
•Understanding Cancer of the Lung: Chemotherapy (CancerBACUP Website)           •Roy Castle Lung Cancer Foundation (Website)
•Information and Advice for Patients Taking Steroids                            •British Lung Foundation (Website)
•Understanding Taxotere Chemotherapy                                            •Alliance for Lung Cancer Advocacy, Support, and Education (ALCASE)
•Information and Advice for Patients Receiving Pemetrexed                       (Website)
•Cisplatin and Vinorelbine Chemotherapy in Combination with Radiotherapy        •DIPEx: Personal Experiences of Health & Illness - (Lung Cancer)
•Understanding Carboplatin and Gemcitabine Chemotherapy
•Understanding Carboplatin/Etoposide Chemotherapy                               Coping with Symptoms & Side Effects
•Cisplatin and Etoposide Chemotherapy in Combination with Radiotherapy          •Breathlessness Support Clinic (West Lothian)
•Information and Advice for Patients Receiving Erlotinib (Tarceva)              •Living with Breathlessness Programme: Information for Patients (Fife)
•Understanding Cisplatin/Etoposide Chemotherapy                                 •Information and Advice for Patients Taking Steroids

                                                                                         Borders Breathlessness Clinic
                                                                                         •Breathlessness Support Clinic (West Lothian)
Clinical Trials                                                                          •Living with Breathlessness Programme: Information for Patients (Fife)
•Understanding Cancer of the Lung: Research - Clinical Trials (CancerBACUP               •Information and Advice for Patients Taking Steroids
Website)
                                                                                         Using a Nebuliser
                                                                                         •Using and Looking After Your Home Nebuliser (W Lothian NHS Trust)
                                                                                         •Information for Patients at Home Using Nebulisers (W Lothian NHS
                                                                                         Trust)
                                                                                         •Information for Patients Using Nebulisers (WLothian NHS Trust)

                                                                                Non-medical Information & Practical Support
                                                                                 e.g. travel, finance, info for specific audiences inc. carers
Websites About Lung Cancer
•Roy Castle Lung Cancer Foundation (Website)
•British Lung Foundation (Website)
•ASH Scotland (Website)
•Lung Cancer Resources: National Institutes of Health (USA) (Website)           General Information About Lung Cancer
•Alliance for Lung Cancer Advocacy, Support, and Education (ALCASE)             •Overview of Lung Cancer in South East Scotland
(Website)                                                                       •Suggested Reading List
•Mesothelioma UK (Website)                                                      •Lung Cancer Information Centre (CancerBACUP Website)
                                                                                •Lung Cancer Questions and Answers (CancerBACUP Website)
                                                                                •Questions and Answers about Mesothelioma (CancerBACUP Website)
                                                                                •Lung Cancer (Cancer Research UK Website)
                                                                                •Mesothelioma Information Centre (CancerBACUP Website)
                                                                                •Lung Cancer Medical Jargon Explained (Roy Castle Website)
                                                                                •Understanding Lung Cancer (Roy Castle Website)

				
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