Session 2 Living With and Beyond Cancer and Recovery Package

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

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

What do you think are the benefits of HNA for: People affected by cancer Health Care Professionals Health Care organisation Discuss and feedback

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

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

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 effective HNA and supportive care planning

Quality of care ‘Failing to plan is planning to fail’ (Earle, 2006)

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

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

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) )

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

Which assessment tool? E.G: Concerns check list SPARC (Sheffield Profile for Assessment Referral and Care) Distress thermometer PCI Patient Concerns Inventory PEPSI COLA

Domains of care Lifestyle Physical Practical Psychological Social Spiritual

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

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

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

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

How can HNA and care planning help to inform health and wellbeing events and treatment summaries? Discuss and feedback.

Holistic Needs Assessment and Care Planning Film

74 sites (as at end June 2015) 15,945 assessments 12, 252 care plans

Worry, fear or anxiety Tired/exhausted or fatigue Sleep problems/nightmares Pain Eating or appetite

eHNA user quotes

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. Health and Wellbeing Clinics are designed to help people get support that improves the quality of their lives, making these as long, healthy and active as possible.

Types of Health and Wellbeing Events Generic Tumour specific Part of Stratification of the Pathway

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

How can a Health and Wellbeing Event benefit PABC and their families? Evidence from pilots in has shown that patients who attended a Health and Wellbeing Clinic event had: 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.

Benefits to PABC and their families (continued) 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 reassurance- even if they don’t need services at that time, they know what’s available and how to access it in the future.

How can a HWBE benefit my practice and organisation? 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.

Health and Well Being Event Video

Post-treatment with GP - assessment and care planning Financial impact of cancer Patient awareness of prescription exemptions Possible late effects of cancer and treatment Information needs in primary care Referring to other support as needed

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

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.

Recovery package – why? As a trust involved in the national cancer survivorship initiative, developing a model based on the 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.

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 Staff –Identifies patient concerns –Often different than perceived by staff –Informs discussion/consultatio n –Promotes efficiency and productivity of consultation –Repeated HNA allows comparison

Challenges of (electronic) holistic needs assessments Logistical issues relating to process/embedding in practice 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! Seen as something else Who gives the EHNA 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?

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

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

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 – remember GP is not a cancer expert! 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.

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 Big bang or stepped approach to implementation Patient and GP experience of summary

Benefits of health and wellbeing events Delivered by experts in a comfortable, supportive environment. Allows up to 20 patients to be “educated” at one time so efficient methodology. Reassuring to patient to be able to bring family or friend along. 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

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

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!

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.