Implementing Stratified Followup What can the LCA do to help?

Implementing Stratified Followup What can the LCA do to help?

Welcome and Aim of the event Mr Nicholas Hyde, LCA Clinical Director

Aim of the event To bring together key clinicians, nurses and managers from the three Stratified Follow- up tumour groups, across all the LCA Trusts To share experiences and learn from each other, across tumour groups To understand some of the challenges and issues associated with implementing stratified follow up To provide an opportunity for Trusts to discuss how they will implement stratified follow up, and agree any actions To consider what more the LCA can do to help

Context A Model of Care for Cancer services August 2010 Tested by the National Cancer Survivorship Initiative (NCSI) http://www.ncsi.org.uk/wpcontent/uploads/howtoguide.pdf

Context Part of the overall LCA Survivorship Pathway Group s remit, closely linked to Holistic Needs Assessment (HNA), treatment summaries, Health and Wellbeing events (and Cancer Care reviews) Key priority area for the LCA (signed off by the Members Board) and for Macmillan (funded LCA Project Manager, and this event) Implementation of stratified follow-up included with cancer commissioning intentions for 2014/2015

Why Implement Stratified Follow-up? Natalie Doyle, Nurse Consultant Living with and Beyond Cancer, Royal Marsden Hospital and Chair, LCA Survivorship Pathway Group

Background What is a (risk) stratified pathway? The cancer survivorship vision recommends that cancer patients should be assessed following initial treatment and then be assigned a level of risk of developing consequences of treatment or further disease. An individual care plan would then be drawn up addressing the whole range of needs an individual might have after treatment with the aim of minimising risks and supporting the patient to manage on-going conditions. A Model of Care for Cancer Services, 2010

What is stratified follow-up? Stratifying patients for follow up according to their risk can ensure that patient needs are better met and that resources are used more efficiently. At the end of treatment, patients no longer have routine follow up appointments. Instead they are educated to self-manage their condition, but if they do have any worrying symptoms, concerns or issues they are able to contact the Trust via a dedicated helpline.

Rationale Improved rates for cancer survival/increased life expectancy will require increased capacity for follow up. NHS Improvement piloted risk stratified pathways in breast, colorectal, prostate and lung which provided a national direction for best practice. Model of Care recommendations. No evidence that routine follow-up identifies disease recurrence Patient experience

LCA specific background Prior to LCA formation, several Trusts where already involved in national piloting SWLCN had secured a bid for implementation in their area Remaining funding from this was transferred to the LCA: the Clinical Board where clear that this was important Successful bid to Macmillan to extend the project for a further 18 months

Three Year View Embed the risk stratified pathways for stable breast, colorectal and prostate cancer patients. Once established the risk stratified pathways can be rolled out to more complex breast, colorectal and prostate patients eg those who have had chemotherapy/radiotherapy if they are thought to be clinically appropriate. Low risk patients from other tumour groups could also be considered and liaison with Pathway Groups should be instigated to identify relevant patient cohorts.

Progress to date LCA wide visits to Trusts to meet Lead Cancer Nurses and CNSs - Engagement - Buy-in - Identifying obstructions to implementation - Sharing existing good practice Engagement of Clinical Pathway Groups Formation of a Risk Stratified Pathway User Involvement Group - Involve Pathway Group Users - Engagement with national charities eg Prostate Cancer UK Development of a pilot implementation pack for Trusts to modify and use. This includes: - Information for patients and GPs - Standard letters

No of patients seen 13 The London Cancer Alliance West and South Number of follow-up appointments booked per consultant before and after OAFU 70 60 50 40 30 Jun-11 Sep-12 20 10 0 WA NR JER WCY/PB Consultant

Benefits and challenges Benefits Patients Positive experience of care Less inconvenience Increased awareness about warning signs and symptoms Assurance of a fast way back into the Trust Trusts Reduction of new to follow up ratios Improved performance GPs/Commissioners More streamlined process Savings Improved patient experience Challenges Manpower CNS/Administrative IT Levels of commitment Ensuring clinical governance is robust Financial and logistical implications

Summary Stratified pathways are a model of care recommendation They seem to offer a solution to the problems of overflowing out-patient clinics People have been positive about how they work in practice Patient experience is improved National piloting has been successful, including in LCAbased sites

Q and A session Identification of issues and challenges Chair: Nicholas Hyde, LCA Clinical Director

Success Stories

Risk stratified pathways Open access follow up Anne Mc Loughlin-Advanced nurse practitioner Kelly Collins-Database Manager

Contents Outline of OAFU at RMH Key factors that led to successful implementation Major challenges

Open access follow up breast patients A brief guide A brief guide Pt has recently completed treatment Patient is on traditional routine follow up Pt discussed MDM Suitability for OAFU agreed Team responsible for administering last treatment (surgery, chemo, radiotherapy) arranges appt in OAFU clinic for three months time OAFU clinics: X2 clinics each site each week OAFU consultation takes place: diagnosis, treatment +side effects discussed. Plan for surveillance; mammos DEXA Patient scans + details endocrine are entered treatment on discussed database + documented Key future events are flagged All patients completing five years of mammographic surveillance and endocrine treatment are discussed in virtual MDM- patients and GP If patient on traditional routine follow up is suitable for OAFU-book to clinic Patients return to hospital for mammo and receive results letter by post Patient reports new symptoms to ANP Appropriate clinic appt arranged or referral to

The OAFU Consultation your diagnosis, treatment and potential side effects plan for mammography, endocrine tx and DEXA scans signs and symptoms to report support after treatment has finished healthy living once tx has completed how to contact us

Patient information End of treatment summary If cancer returns: signs and symptoms Side effects of treatment Anti- hormone therapy Mammograms Breast cancer under 45 Breast Cancer Care Moving Forward Folder Macmillan: Managing the late effects of treatment

Remote monitoring paper based requested at entry in to OAFU and each year after identify patients no longer active following new diagnosis/recurrence or discharge to G.P use of EPR appointments for preparing monthly virtual MDT meetings reliant on a data base manager

Progress to date over 3228 pts are enrolled 1359 diagnosed less than one year from diagnosis 1869 transferred from traditional follow up Imaging surveillance: 135 pts a month Sutton 57 pts a month Chelsea M3 meeting: 9 pts a month Sutton 3 pts a month Chelsea 49 pts currently deferred mammos DEXA scans: 403 Sutton, 242- via GP

No of tel calls: 2013

Telephone queries

Virtual MDM To identify and inform patients: that no further treatment or imaging is required beyond the five year mark who may benefit from extended hormone treatment, or switching of endocrine treatment with a family history of breast cancer who may require additional screening Exclusion criteria: Grade 1 or 2 tumours, negative nodes, er positive, Her 2 +ve, LVI positive, node positive, Her 2 negative

Challenges would pts accept a self care approach? would the clinical teams feel confident? how would we track mammos, endocrine tx, DEXA scans? limitations of existing IT systems and paperwork managing phone calls: reassurance vs new/ local metastatic disease

Factors that led to successful implementation Involvement of the whole team CQUIN target Small dedicated team to manage day to day running Constant liaison with different groups of staff Awareness of additional resources for patients at End of Treatment

Benefits patients have sufficient information knowledge, support and confidence to self manage reduction in routine follow up appts uniformity of follow up care

Telephone audit The London Cancer Alliance West and South To assess if the introduction of oafu had increased the no of calls to the BCN 8 BCN took part over a one month period 2011: 265 calls in total 2013: 401 calls in total (136 from pts who had completed treatment for breast cancer)

Patient satisfaction audit Aim: to assess satisfaction with OAFU including how well pts understood the written information, how confident they were about re- accessing the breast team and supported self management QN sent to 200 pts 81 returned, majority of respondents were white and post menopausal

The plan for my follow up care was clearly explained and I understood what would happen No of replies: 81 90% strongly agreed or agree

I was content with not receiving regular appts within the breast clinic No of replies: 81 62 % strongly agreed or agree

The information discussed made me feel less anxious No of replies: 81 56% strongly agreed or agreed

I received enough practical advice and information about life after cancer treatment No of replies: 76 47% strongly agreed or agreed

I felt confident that I could contact the team as required No of replies: 77 77% strongly agree or agree

The Future implementation of a system to replace the current excel database using hospital patient pathway system an electronic patient summary within EPR system an automated production of patient mammogram letters updating and refining patient information, guidelines and protocols Patient experience of oafu

PSA Tracker A Remote Follow Up Service Matthew Perry St George s Hospital, London Matthew.perry@stgeorges.nhs.uk

St George s Experience High level of involvement Clinical champion eg Consultant Patient involvement IT lead for Trust Pathology technical lead for trust Funding ( 6K) Project Lead

Infloflex at MDT Activate Patient EP R Tracker Pathology lab PSA form Patient letter GP letter

St George s Experience Patient added to MDT meeting via Infoflex Automatically added to Tracker system via infoflex Patient activated following clinical discussion and consent PSA test form given Notices set up, PSA time and value (Alerts) Weekly review of database for alerts/replies Letters/telephone calls activated.

St George s Experience Pitfalls and Solutions Weekly virtual clinics Renumeration Pathology laboratory Clinical champion bedding in to BAU IT troubleshooting Set time aside in Job Plan CCG discussion A London issue? Identify wins early Clinical engagement Money helps!

St George s Experience Project Manager Clear patient benefits Clear clinician benefits Clear commissioner benefits Good Governance Not for all patients Re-entry pathways need to be clear

Risk stratification: Colorectal cancer Claire Taylor Macmillan Lead Nurse Colorectal Cancer St Mark s Hospital

48 The London Cancer Alliance West and South Aims of colorectal cancer follow-up care To improve survival detection of recurrent disease To improve quality of life - management of any treatment complications Support and reassurance Audit Among patients who had undergone curative surgery for primary colorectal cancer, the screening methods of CT and CEA each provided an improved rate of surgical treatment of cancer recurrence compared with minimal follow-up, although there was no advantage in combining these tests, FACS trial, JAMA 2014

49 The London Cancer Alliance West and South Rationale for risk-stratification Responsive to individual needs e.g. can facilitate access to specialist care when needed. Risk stratification dependent on need: self management, shared care or complex Based on an ethos of partnership and peer support Aiming to embrace 5 shifts i.e. consideration to consequences of cancer treatment, using PROMs

5 key shifts 1. a greater focus on recovery, health and well-being after cancer treatment. 2. holistic assessment, information provision and personalised care planning. 3. Supported self-management 4. away from clinical follow up to tailored support that enables early recognition of the consequences of treatment and the signs and symptoms of further disease. 5. measuring experience and outcomes

51 Lifestyle interventions Treatment record summary GP Cancer care review Support groups Assessment & care planning Individualised after-care

St Mark s pilot stratified follow-up pilot for low risk colorectal cancer patients Supported self-management Complex care

Establishing the clinic Examined current follow-up care pathways for patients with colorectal cancer Reviewed evidence and seek patient feedback Estimated patient numbers Determined key quality indicators Met with stakeholders Wrote a project plan

Criteria for supported self-management completed curative treatment a T 1, T 2, T 3 N 0 cancer no significant surgical complication willingness will be put on pathway

Patient numbers 300+ new patients a year 30% may be eligible: excludes private patients, those with severe learning disabilities or mental health issues and patients on clinical trials Across 4 Consultants = 100 patients a year plus any who can step down

Patient feedback 8 Trust Cancer user group members? In the community What if no services available locally to meet need. Stoma support group: 12 Inside Out members support should be gradually decreased and withdrawn only when the patient felt ready Individual discussions with 8 patients who indicated overall satisfaction with current service but for some: a preference for greater continuity A need for peer support Some dependence upon the Consultant Delays in getting appointments and results

Setting of standards All patients are offered a full holistic needs assessment & survivorship care plan All patients receive agreed surveillance protocol All patients are offered core written information All patients receive offer of further support All patients seen in surgical clinic in 2 weeks if symptoms develop

How to make it happen Training: MI, IRMER, ICS, Dragon Team work Management support Securing and developing resources

IT software development Results look-up Alerts for limits Consultant notified if anything acute CNS checks results GP and patient notified by letter Next test booked

Major Challenge 1 Engaging and convincing commissioners: What does this mean for us? Level of on-going contact Management of symptoms Who should manage these symptoms

61 The London Cancer Alliance West and South Shift 1: Recovery package

CRC MDT identify patients who meet criteria to enter list to identify possible e- HNA assessment 10 mins CNS undertakes virtual clinics every week and reviews all patients on programme to see when planned surveillance due and if results are available they are viewed and actioned. Only once letters sent out to pt and GP can next surveillance test be booked. Over 5 years Decision recorded on patient s MDT Proforma. Patient informed of this decision at first postoperative OPD and verbal consent gained Patient sent letter by CNS inviting them to join the selfmanagement programme CNS: invites patient to attend the HNA clinic and undertake e-hna Patient completes e-hna assessment. CNS: Discussion of patient s needs and care planning care Patient put on to telephone follow-up and invited to attend Reach for recovery Self-management box is ticked on GCIS for each patient to activate remote surveillance - can be taken off if they decline Send to patient: Introduction letter, HNA booklet and flier about Reach for Recovery. Send letter to GP about pathway Clinic Clerk makes 6/52 OPA for HNA clinic In St Marks out-patient clinic. Patient offered information on Living with cancer, Health promotion, Top Tips, further sources of support etc CNS plans formal telephone clinic dates with patients and documents updates in GCIS

Resources in clinic Explaining how to take Loperamide (Imodium)

66 Shift 2. Holistic assessment and care planning BOWEL FUNCTION PAIN FEAR OF RECURRENCE 3 3 7 COGNITIVE CONCERNS 3 FAMILY CONCERNS TIREDNESS 3 6 DIET 4 5 EXERCISE 4 4 BODY IMAGE SEXUAL ISSUES N=11

Major Challenge 2 Fitting this into day job 1 patient = 2 hours per 1 st visit Co-ordination Employed part-time Band 4 but long orientation required Administration No secretarial support. Need for virtual clinic

Shift 3: Components of Cancer Survivor Self-Management (Foster et al., 2009) Problems After Cancer Treatment Effects of treatment Abandonment Lack of information Lack of support Emotional difficulties Social/relationship difficulties Physical/functional changes Sources of Self Management Support Healthcare workers Families & friends Accessing information Networking with other cancer survivors Work & finance Organised support Self Management Strategies Psychological problems: Altered outlook/priorities Managing emotions Self resourcefulness Social problems: Proactive socialising Sharing experience Resisting contact Managing work/finance Physical problems: Simple strategies Complex strategies Problem Resolution LIVE WELL AFTER CANCER External Resources Personal Resources what health services do to aid and encourage people living with a long term condition, to make daily decisions that improve health related behaviours, and clinical and other outcomes. (NCSI Self-Management Workstream, adapted from Co-Creating Health, The Health Foundation, 2008).

70 The London Cancer Alliance West and South Shift 4: from follow-up to after-care To ensure those living with and beyond cancer get the care and support they need to lead as healthy and active a life as possible, for as long as possible NCSI, 2010

Reach for recovery FOLLOWING BOWEL CANCER TREATMENT

72 The London Cancer Alliance West and South Session Content 1 Introduction and overview of colorectal cancer and its treatments. What is normal recovery? 2 Managing your body and its symptoms. What is selfmanagement? 3 Recognising and managing emotions. Coping with feelings, financial concerns and return to work. 4 How to increase your activity levels What are the benefits and barriers to being active? 5 Finding a diet that is right for you. 6 Talking to doctors and nurses and finding further support on Living beyond cancer

6 months on experiences Difficulties Clinic coding telephone clinic Timing of clinic Time spent on administration Advantages 1hr consultation Therapeutic role Timely review of patient concerns Flexibility for pts

The initiative cycle Implement Investigate Innovate 2013 2014 2015 How long will change take?

Shift 5: Monitoring and measuring Monthly reviews during initiation Share experiences Seek continuous feedback: value compliments as well as learn from complaints/ mistakes PROMS

Next steps Feedback to commissioners and clinicians Further roll out once CNS sufficiently resourced Modify Health and Well-being event Treatment summary

77 The London Cancer Alliance West and South Value of risk stratification Redesigning follow up will enable clinicians to spend more time with complex patients Changes emphasis of follow-up care Supports patients in self-management Releases savings estimated to be 98 per FU

What will success look like? Risk stratification implemented A 50% reduction in outpatient attendances from the traditional model An improvement in the experience and patient reported outcomes of care from baseline A 10% reduction in unplanned admissions from baseline.

IT Issues and Solutions

Cancer Remote Monitoring @ ST George s NHS Trust: IT Issues and Solutions Justin Beardsmore St George s NHS Trust Implementation Technical Lead

Installation and Setup NBT installed Application via N3. We provided a virtual server & MS SQL DB instance. A few glitches but NBT resolved without our assistance. Installation time was a little more than half-aday, but shouldn't be going forward.

Data Interfaces

On-going support requirements Trust IT to support infrastructure and data imports. Urology department manages application (users/passwords). Other departments to take responsibility for providing extracts. Supplier (NBT) to manage application roadmap.

Tracker Limitations of use HL7 Interface on wish list, but Bulk Import process meets present needs (low maintenance, weekly clinic). Multi lab functionality Urban area s where GP s have the choice of using a number of hospitals for test results. South West London Pathology Project will resolve this issue. Need to clarify support agreement.

Risk stratified pathways Open access follow up Data Collection Kelly Collins - Data Manager

Contents OAFU database Administration / Workload Virtual MDT Patients taken off remote monitoring OAFU database - benefits OAFU database - challenges Remote monitoring - Future

Open Access follow up - Remote monitoring Since the rollout of OAFU at the end of 2010 approximately 3300 patients have been entered. There are currently around 2500 patients active with access back to the breast team if required. As patients no longer attend for clinical review, the OAFU database was created to remotely monitor patients.

Open Access database Record all breast patients on OAFU Track annual appointments Alert team of outstanding investigations and results Highlight patients who are due for review Identify patients who are coming to the end of their follow up and treatment pathway

Open Access database Patients on annual recall for mammography MRI and ultrasound in addition to mammography Endocrine review and switch DEXA scans - 2 yearly if taking an AI endocrine Clinic appointments for results and oncology review Urgent investigations

Administration / Workload Mammogram results Mammogram appointment sent to patient Patient attends for mammogram Patient does not attend (DNA). Further appointment sent Fails to attend 2 appointments. No further appt made. Deferred Normal result No Discussed in M3 meeting and contacted by ANP with outcome Yes Standard letter generated and sent with appointment for following year. If having final mammogram advised to re-join NHSBSS if required Further views. U/S or biopsy CNS contacts patient with result Normal / Benign New cancer / Recurrence / Metastatic Off tracking

Administration / Workload Monthly tracking 30 3 20 3 Mammograms MRI DEXA scans Endocrine review U/S 190

Virtual MDT Virtual MDT discusses patients who are: Due to complete 5 years of endocrine Endocrine due to be switched at 2 3 year mark Requiring additional screening

Virtual MDT - Criteria Grade 2 or 3 Size: 20mm or more LVI: Present Node positive Strong family history to discuss extended screening

Virtual MDT preparation Patient list circulated to VMDT members Presented using PowerPoint Generated from patient EPR

Virtual MDT - Template Patient details: Discussion: Site: Hospital number : Name. DoB: 5 year endocrine review / Switch review / screening plan Sutton / Chelsea Consultant Diagnosis: Management: Histology: Date diagnosed tumour type and side Date of surgery, type of surgery and neo-adjuvant treatment if undertaken ER, PgR and Her2 receptor status. Histology: Tumour type, grade, Size, nodes. Pathology taken from patient path report. Adjuvant treatment: Date of chemotherapy, radiotherapy and adjuvant endocrine Clinical trials: Family history: Screening: Outcome: Details of any trials related to breast Details of family history of breast cancer Mammography screening plan and results of last DEXA scan if undertaken. Agreed outcome recorded

Patients taken off remote monitoring Discharged Not on endocrine completed 5 years of screening and is over age 50 Discussed in Virtual MDT screening complete on extended endocrine Discussed in Virtual MDT endocrine complete Off tracking New cancer or recurrence Metastatic disease Deceased BRCA carrier Clinical decision

OAFU database - benefits Has enabled breast unit to decide what data capture is required and expand on this as the OAFU programme has progressed A quick method of implementing a system to remotely monitor patients Easy to implement with limited IT resources

OAFU database - challenges Not an automated system creating large administrative workload Duplication of data entry Not a fully robust system easy to delete information Supporting an increasing amount of data

Remote monitoring - Future Full implementation of in-house database by next year to create: Automated reporting system Automated tracking system and date alerts An electronic patient summary integrated with EPR and in house database Less reproduction of data entry More streamlined remote monitoring tool

Group Discussions (in Trust Groups) What have I learned today that I can take back to my Trust? What challenges do we see? How will we tackle these? What 3 things will we do next to take forward Stratified Follow up? What more can the LCA do to help?

Summary and Finish Chair: Nicholas Hyde