Holistic Needs Assessment (HNA) & Treatment Summaries Emma Mitchell, Macmillan HNA Project Manager

Holistic Needs Assessment (HNA) & End of Treatment Summary Emma Mitchell Macmillan Holistic Needs Assessment Project Manager Introduce role and background

LWBC Programme Why be part of the LWBC programme? Increase in cancer patients surviving cancer 1.8 million increasing to 3 million: the projected increase in cancer survivors by 2030 47.3% of survivors express a fear of their cancer recurring Increase in symptoms and concerns not addressed - 40% of prostate cancer survivors report urinary leakage 19% of colorectal cancer patients report difficulty controlling their bowels Not everyone is living well people with cancer are 35% more likely to be unemployed 1 in 5 people suffer from loneliness as a result of their cancer The dramatic increase in people living with cancer is largely due to improvements in survival and detection, and a growing and ageing population, with the number of over-65s living with cancer increasing by almost a quarter (23%) in just five years. In general most cancer sites are increasing overall survival significantly but not all cancer sites eg Upper GI, brain ca’s

LWBC Programme Recovery Package … Treatment Summaries Holistic Needs Assessment (HNA) and Care Planning Health and Wellbeing Events Cancer Care Plan Why do we need to consider unmet needs of those surviving a diagnosis of cancer? Focus on surviving cancer – more patients living well and for longer after cancer. In the Oncology setting it’s easy to focus on patients with cancer dying on the wards, receiving pall chemo but many many more patients are surviving and we need to cater for them The research by Armes et al (2009) identified significant unmet needs at the end of treatment. These findings were supported by the recent PROMs survey, commissioned by the Department of Health, highlighted high levels of anxiety and fear of recurrence and dying one year after diagnosis and that currently only 24% of people were offered a care plan. 2009 – NCSI set up to challenge and change the process to enable people to be better supported at the end of treatment.

Three projects all interlinked Holistic Needs Assessment & Care Plans Identifies the individual needs of the person affected by cancer – physically, mentally, socially, financially A Care Plan can then be developed for appropriate referral to countywide support services. Care Plan is given to the patient to enable self management and sent to GP via Treatment Summary Treatment Summaries Compiled by the multidisciplinary team to provide important info for GP’s e.g:- Treatment toxicities Info on side effects Consequences of treatment Signs and symptoms of recurrence Any actions to take Patient and GP receive a copy and a copy kept in secondary care HNA results will form part of the decision between clinician and patient of whether they are suitable for the self management Risk Stratification for self management pathway Enables people who are willing and able to undertake self-management to do so in a safe and supported manner Removal of routine follow-up appointments from the pathway. Routine surveillance is still completed at set intervals. However, these do not require the individual to automatically see a hospital doctor or nurse to receive their results. We need to support people with cancer to return to as good a quality of life as possible after active treatment has ended, or support them to achieve their personal goals if they will be living with either primary or secondary cancer for some time. Treatment Summaries provide crucial information to the patient about how to self manage their condition It is also an important communication tool from secondary to primary care about the patients treatment and any ongoing support needed

HNA and Care & Support Plans The Recovery Package Risk Stratification HNA and Care & Support Plans Use this slide to discuss the elements of the Recovery Package and describe them briefly: The recovery package consists of 4 key elements: Holistic Needs Assessment Treatment Summary to patient AND a GP / Cancer Care Review by GPs An education event such as Health and Wellbeing event that includes physical activity and lifestyle information Short description of the different elements of RP: - Holistic needs assessment (HNA) - identifies the individual needs of the person affected by cancer and contributes to a consultation. The consultation can then be focused on the needs identified, a care plan can be developed and an appropriate referral can be made to services. The patient receives a copy of the care plan to enable self management; further copies are stored in the medical records and can be sent to the GP. - Treatment summary - is developed by the multidisciplinary team to inform the patient and the GP of the care and treatment received.  The patient receives a copy to share with other family members and health care providers. Further copies are stored in the medical records and inform emergency/unplanned admissions.  - Cancer care review - is carried out by the GP practice within six months following a diagnosis of cancer and gives the patient information to enable self management. - Health and Wellbeing Clinics - are education events to give the person affected by cancer the holistic information they need to enable rehabilitation and self management. Referral to Take Control within Macmillan Next Steps Cancer Rehab team

What is the Treatment Summary Dr. ZVirtualone Virtual Road Virtual ZZ99 3WZ Re: Xxxbelinda Xxxbrush DOB: 26/05/1905 MRN: 108267766 NHS No: 100 100 100 100 Greenway View, Abergavenny, Gwent, XX1 1XX Diagnosis:   Staging: Date Patient Informed of Diagnosis: Summary of Treatment and relevant dates: Treatment Aim: Required GP actions requested Hospital Ongoing Management Plan: Possible side effects of treatment: Contacts for queries: Other service referrals made (e.g. MNS Take Control, Dietician, Clinical Psychologist): Alert symptoms that require referral back to hospital specialist team: Future management plan Summary of information given to the patient about their cancer and future progress: Additional information (including issues to relating to lifestyle and support needs including patient and family concerns) What is the Treatment Summary The treatment summary includes information on possible treatment toxicities and /or consequences of treatment, signs and symptoms that require referral back to a specialist team, an ongoing management plan, and a summary of information given to the individual about their cancer and future progress and any required GP actions to support the patient. Copies are sent to the GP and provided to the patient when they are discharged. General Practitioners and primary care professionals The patient, to enable greater understanding and clarity of their condition and provide a summary to share with others of their choice Secondary care clinicians   All sections of the TS should be completed and a copy given to the patient and sent the GP promptly at the end of primary treatment for cancer. TS updates should also be generated at key points e.g. following recurrence, further treatment or a transition to end of life care. The GP should enter the details onto their data base and use the information to inform the Cancer Care Review.1 What type of Treatment Summary will be used? When will the Treatment Summary be completed in the patient pathway? Who will completed the Treatment Summary Where will the Treatment Summary be sent? Completing Clinician: Signature: Date:

What is a HNA? Tool to assess the patient holistically as a whole person. Scoring system to identify patient’s concerns (needs) Physical Practical Social / Family Emotional Spiritual Lifestyles Support / Care Plan support / information / referral or signposting Information booklet , Triplicate Assessment Pack for assessment and care planning Signposting – we’re good at using Maggies but there are other VERY GOOD similar units out there such as Great Oaks, Longfield who provide similar services. Support for carers, complimentary therapies. Other organisations eg GL1, walking groups, Signposting directory – signposting for each concern, available electronically through a share drive + paper format www.be.Macmillan.org.uk

Patients identified improvements in: They felt helped, listened to Relationship with clinicians Identifying issues Understanding Enabling thinking Feeling of wellbeing Releasing anxiety Gaining perspective They felt helped, listened to and 97 % Cared for Patients told us that the process of assessment and care planning – Helped me – 91% Made me feel listened to – 96% Answered all my questions – 97%

Emma Mitchell Identify concerns for each sub group eg… The vision is that all patients will have an assessment of needs at 2 key points in their care pathway, at or near diagnosis at the end of treatment and if health or social needs change. The process for assessment should be structured - Information giving, self assessment, conversation, care plan, signpost and share with relevant members of the MDT. The self assessment enables the patient to identify their own needs and enables a focussed discussion. Enables self management The care plan should then address the needs raised by the assessment and signpost people to the right services either in the hospital or community. You need to be able to measure the level of concern to enable to monitor the concern / resolution of the problem. Emma Mitchell

eHNA Touch screen tablet to do the HNA - partly pre- populated care plan Alleviates practical problems of carbon copied HNA Patients like using them Increased completion rate of HNA’s and conversion rate to Care Plans Improved communication - Joined up seamless care Data collection – steer future services Move towards paperless working Completion on tablet pc. Early evaluation shows acceptable to patients and staff. Efficient, enables more care plans to be created. Produces useful data, gaps in services, inform commissioning. Data can also be used for annual reports and Peer Review.

Can drill down to the data - matching age, gender, diagnosis, pathway stage and concern raised. Giving a much more informed picture of peoples needs. Demographic page double check patient details – Governance – and ensure right details for EPR Personal information not stored, just data. The concerns identified are automatically brought through to a partially pre-populated care plan in order of priority according to the score. Continue and individualise in free text. Can be an aide memoire of signposting for the patient Can saved (owned by patient) for cross reference of next HNA, Print off ultimate care plan for patient, copy of HNA and care plan sent to G.P Data can be used for developing reports, Peer Review, developing and commisioning services and informing re the need of patient for information and health and wellbeing clinics.

Emma Mitchell Macmillan HNA Project Manager emma.mitchell@glos.nhs.uk

A Patient’s Story Paul Illott

INTRODUCTION – A FAMILY HISTORY Name: Paul Ilott; Age: 61; Married 41 years to Sheila (65), two sons, 38 and 36. 1963: Lost my grandmother, mum’s side, stomach cancer 1970: Lost my grandfather, dad’s side, lung cancer 1984: My wife had cervical cancer – surgery - now clear. 1991: Mother-in-law, ovarian cancer then secondary lung, died 1991. 2002: Lost my father to lung cancer. 2009: I had thyroid cancer 2009, two surgeries and radioactive iodine treatment, clear since. 2012: Lost my mother from carcinoid tumour on the liver, 10 weeks after diagnosis. 2015: Lost my father-in-law, unknown primary but secondary on the liver 2016: Brother-in-law has cancer of soft palate. Radiotherapy/Chemo; waiting scan results

Nov 2015: weight 100kg

Aug 2016: weight 82.5kg

Clare Lait’s Exercise classes

Question Time

Cancer Patient Reference Group (PRG) Jenny Hepworth, Chair , Cancer PRG

It's your chance to really make a difference… …this was my way of giving something back by ensuring others benefit from improved services …I joined to make a difference …to take an active role in helping others with cancer http://youtu.be/ohIhvS8O-ic

Sum up and Close More questions? Information Stands: Macmillan Practice Nurses, helping the transition of caring for patients with cancer from secondary care (hospital-based) to primary care (the GP surgery) Advanced Care Planning Informal networking time Suggested dates for future meetings 2017: 28 July and 27 October Information Stands Macmillan End of Life Coordination Practice Nurse Facilitation Maggie Pugh is a practice nurse facilitator working for Gloucestershire CCG. She is one of a team of five facilitators whose role is support General Practice nurses in primary care. Each facilitator covers a different area of Gloucester. General practice Nurses look after many aspects of their patients’ health: long-term conditions such as asthma, diabetes, family planning, immunisations and travel health, wound-care etc. It is essential for safe patient care that Practice Nurses are competent at their work, so the role of the facilitators is to support practice nurses to remain competent and to help develop standards to ensure safe patient care. Facilitators: • Identify clinical and educational needs; • Support the sharing of good practice; • Develop a consistent standard for practice nursing • Support local development of primary care as a career pathway for student nurses. • Help the transition of caring for patients with cancer from secondary care (hospital-based) to primary care (the GP surgery) Please come and have a chat if you would like to find out more or have any comments to make.