1. Implementing the Recovery Package Session 2 2016

2. 1. Promote wider understanding of Recovery Package 2.Overview of the elements of Recovery Package and wider issues in relation to Living with and Beyond Cancer Purpose of session

3. 1.Recovery Package 2.Redesigning follow-up 3.Physical activity 4.Consequences of treatment The NCSI defined four priorities:

6. What do you think the benefits of HNA are for the: -Person affected by cancer -Healthcare professional -Organisation Discuss and feedback

7. Benefits for PABC undertaking HNA Provides the opportunity to identify any needs or concerns they may have Person centred i.e enables issues and concerns to be identified that might not otherwise be addressed in a HCP led assessment Relieves anxiety

8. Benefits for HCP Consistent and structured approach Provides a framework so needs are identified from a PABC perspective( often can be unexpected) e.g family concerns, work and finance

9. Benefits for organisation Improved patient survey results Amalgamation of data can support service development Consistent framework for HNA and Supportive care Planning Recognises the importance of HCP role in supporting and supportive care planningeffective HNA

10. Quality of care ‘Failing to plan is planning to fail’ Earle, 2006

11. Why care plan... Refocusing on what is important Regard for patients viewpoint Ability to prioritise concerns Individualised care Patient centred care Self management Quality care

12. Why care plan... ‘Care plan identified as core component in survivorship individualised Holistic Needs Assessments’ McCabe, 2013

13. Assessment alone is not enough ‘ Triage, Referral, Evidence base, Individualised care, Promote self management, Recognition of recurrence, Recognition of consequences of treatment, treatment of distress and common problems’ Carlson, 2013

14. Additional Data Think about what more you can record: Unplanned admissions Telephone calls Crisis management

15. Which assessment tool? e.g. Concerns checklist SPARC (Sheffield Profile for Assessment Referral and Care) Distress thermometer PCI Patient Concerns Inventory PEPSI COLA

16. Domains of care Physical Practical Psychological Social Spiritual

17. What are some of the challenges of introducing and sustaining HNA and care planning? What are the potential solutions? Discuss.

18. What skills do HCP require to undertake effective supportive care planning? Discuss.

19. Skills required You may have identified the following: Knowledge of where and how to signpost Maintaining safe/effective environment Effective communication skills Effective time management Appropriate clinical knowledge e.g consequences of treatment Motivational interviewing skills to support effective self management

20. How do you feel that effective HNA and care planning has improved your care of people affected by cancer? Discuss

21. How can HNA and care planning help to inform Health and Wellbeing Events and Treatment Summaries? Discuss

22. Holistic Needs Assessment and Care Planning Film

23. Achievements Number of sites – 74 Assessments - 26,039 Care plans – 21,108 Conversion rate – 81% Time taken per Assessment: 6mins 53 seconds (these figures are correct at 24 th February 2016) Top ranking concerns 1.Tired/exhausted or fatigued 2.Worry, fear or anxiety 3.Sleep problems/nightmares 4.Pain 5.Hot flushes/sweating 6.Eating or appetite 7.Getting around 8.Anger or frustration 9.Sore or dry mouth 10.Sadness or depression

24. eHNA User Quotes

25. Worry, fear or anxiety (breast, ovarian, head & neck, endometrial, melanoma) Tired/exhausted or fatigued (breast, kidney, non-hodgkins lymphoma, ovarian, head & neck) Sleep problems/nightmares (breast, head & neck, lung, melanoma, ovarian) Pain (breast, ovarian, head & neck, kidney, melanoma) Eating or appetite (head & neck, kidney, ovarian, breast, lung) Top Concerns from Care and Support Planning

27. Medical communities of influence Treatment Summary Triplicate Pack –Started with paper to bridge any gaps Evaluation in progress –Feedback on template –Feedback on format Triplicate Pack

28. User Guide & Templates What is a Treatment Summary? Why have we developed this? Approaches/Formats Best practice Commissioning Quality Outcomes Framework (QOF) Templates Refresh end of 2016

29. Specification Treatment Summary Specification Complete early 2016 –Criteria for electronic adoption –System requirements –Additional functionality –Working with Somerset Cancer Register (SCR) and Infoflex

30. What next? Extending use of Treatment Summary Rolling out to new Trusts More PABC to receive copies Changes to what information is captured Improved sections on CoT for PABC Sites that don’t have an electronic template can start with a paper template

32. What are Health and Wellbeing Events? They are education and information events to enable people living with cancer and their families to take control and participate in their recovery, giving them necessary information, and promoting positive lifestyle change. Good opportunity for peer to peer support

33. Types of Health and Wellbeing Events Generic Tumour Specific Part of Stratified Pathway

34. Research 52 Sites across the UK 63% running a HWBE and 55% planning a HWBE Median attendance = 14 50% less than £500 to run Most at end of treatment (64%) – some pre treatment (13%) Top subject areas 1. Healthy Lifestyle6. Consequences of Treatment 2. Physical Activity7. Benefits 3. Diet8. Finance 4. Recurrence9. Returning to work 5. Fatigue10. Lymphodema

35. Next steps Re-engage with participants from research Analyse feedback from Mac Prof conference Development of HWBE- a How To Guide including: -Agenda templates and examples -Flyer and poster examples -Invitation examples including letter templates -Example evaluation forms

36. What are the benefits of Health and Wellbeing Events for people living with cancer, their families/carers and the organisation? Discuss.

37. Benefits: PABC and family Better knowledge of the signs and symptoms of cancer recurrence and consequences of treatment More confidence to question or challenge information and make informed decisions about their health.

38. More confidence to deal with the physical discomfort and emotional distress associated with cancer and its treatment from interfering with their everyday life. A strong sense of - even if they don’t need services at that time, threassuranceey know what’s available and how to access it in the future. Benefits: PABC and family

39. Help provide better patient outcomes, reduce unplanned admissions helping meet quality agenda by: Providing an effective atmosphere for delivering health and wellbeing messages in an informal and relaxed setting. Empowering patients by providing knowledge and boosting confidence, leading to earlier intervention and improved outcomes. Benefits: Organisation

40. Health and Well Being Event Video

41. A discussion that takes place up to 6 months after diagnosis with GP or practice nurse It may include discussion of… Needs assessment Physical, practical, family, emotional, spiritual/religious Information Work, benefits, support, prescription, exemption Treatment Cancer therapy, understanding, medication Recurrence Ongoing monitoring, symptoms of recurrence Consequences of Treatment Signs and symptoms of CoTs and what to report Actions Get more info, resources, referral/signposting contact details and review.

42. User Guide What is a CCR Why it is important Principles of CCR Conversation topics – redefining content How to capture information/electronic formats Using HNA as part of CCR Working with medical communities of influence Looking for PABC and practice nurse engagement

43. Challenges and Benefits of implementing the Recovery Package in secondary care Abigail Orchard Lead cancer nurse/Advanced nurse practitioner, Dorset County Hospital November 2011.

44. Overview Dorset County Hospital Dorset County Hospital Foundation Trust is the main provider of acute hospital services to a large rural population of 230,000 living within Weymouth and Portland, West Dorset, North Dorset and Purbeck We have above the national average number of older people We provide diagnostic and treatment interventions for the majority of cancers, with less common cancers being treated in other regional hospitals

45. Recovery package – why? Trust involved in NCSI. Recovery Package model was essential to enable appropriate support to patients This was a key driver, however, rather than focus just on patients being managed as part of the survivorship initiative, we opened it up to all patient groups.

46. Benefits of (electronic) holistic needs assessments Patient –Rates the problems –Highlights concerns in a timely fashion –Promotes discussion about emotive issues –They feel listened to/cared for –Centres the care around the patient as directed by patient –Increased sense of control/empowerment H&SC Professional –Identifies patient concerns –Often different than perceived by staff –Informs discussion/consultation –Promotes efficiency and productivity of consultation –Repeated HNA allows comparison

47. Challenges of (electronic) holistic needs assessments When to do it- which key points of the cancer journey Frequency of HNA Felt by CNS’s not to be appropriate at diagnosis Never the right time! Never enough time! Who gives the HNA to the patient/ instructs/ helps them? Where to do it - privacy When to go through HNA results with patient? Paper v electronic Postage costs Patients forgetting to return /refusing to complete Sharing HNA with MDT Storage of results – where? H&SC Professional

48. Benefits of care planning Owned by the patient: empowers & promotes self management Allows tailored information/support to be given on management of concerns Signposting to relevant groups/services Care plan can be shared with other health care professionals to promote continuity of care Reduces ad hoc calls regarding concerns H&SC Professional

49. Challenges of care planning Making time to write it Keeping it up to date How often? Logistics of doing it with the patient/sharing it with the patient Making it individualised Without “my care plan”, very labour intensive How to improve discussion of difficult topics – sexual health H&SC Professional

50. Benefits of treatment summary GP and patient have a succinct record of cancer diagnosis and treatment to date Written in language suitable for patient and GP Helps ensure consistent information is given to patient by both GP and cancer clinicians. Reduces risk of conflicting advice. Highlights signs of cancer recurrence as well as short and long term side effects Provides information on how to quickly refer back to hospital in event of recurrence H&SC Professional

51. Challenges of treatment summary Agreeing the content of the document Getting buy-in from all staff involved When in the pathway? How often? How and when does it get triggered? Who produces it? Making time within established workplaN Paper/electronic Patient and GP experience of summary H&SC Professional

52. Benefits of Health and Wellbeing Events Delivered by experts in a comfortable, supportive environment Allows patients to be “educated” at one time so efficient methodology Reassuring to patient to be able to bring family or friend along Allows peer to peer supporT Covers core subjects areas – exercise, diet, psychological health, complementary therapy, finance and benefits advice. Enables all cancer sites to be managed in one session – more efficient PABC and H&SC Professional

53. Challenges of Health and Wellbeing Events Getting the format right to suit the majority When in the cancer pathway? How to contact/inform/invite patients How to promote the service Funding the service Where to hold it – on site or off site? Getting buy-in from staff How to measure success? Non-site specific, generic sessions – they do not cover site specific issues – e.g. lymphoedema for breast cancer, incontinence for urology

54. Overcoming the challenges Engage with patients and family/friends Engage with staff Good leadership - vital Be realistic about implementation – how, when, who, where. Pilot in right team! Sell the idea of benefits to staff and patients Funding opportunities Work with outside agencies/voluntary sector/existing cancer services staff Evaluate – audit/patient experience Keep the momentum up – keep on key agenda’s Challenge current practice and be brave to make change!

55. Commissioning /Funding Experience Collaborate with CCG so they know what is being delivered The sessions must be recognised as a way of reducing traditional follow-up and so be funded properly Macmillan provided grant to help cover set up costs The set up and running costs can actually be minimal with good planning and use of existing resources/voluntary help/local experts