Standard Operating Procedure For Access To Out Of Hours Care For Adults With Palliative And End Of Life Care Needs

Lincolnshire Community Health Services NHS Trust St Barnabas Hospice United Lincolnshire Hospitals NHS Trust Marie Curie Care Standard Operating Procedure For Access To Out Of Hours Care For Adults With Palliative And End Of Life Care Needs Reference No: Version: 3 Approved by (Committee name): G_CS_3 LCHS Trust Board Date approved: 12 th September 2017 Name of originator/author: Name of responsible committee/individual: Date issued: September 2017 Review date: August 2019 Target audience: Distributed via: Kay Howard, Teresa McNally (LCHS) Julie Bishop, Louise Price, Lawrence Pike (St Barnabas Hospice) Jayne Unwin (Marie Curie) Lincolnshire and Borders Palliative and End of Life Group This SOP applies to all health care practitioners within Lincolnshire Organisation communication networks 1

Lincolnshire Community Health Services NHS Trust Standard Operating Procedure for Access to Out Of Hours Care for Adults with Palliative and End of Life Care Needs Version Control Sheet Version Section/Para/ Appendix Version/Description of Amendments Date Author/Amended by 1 New May 2012 Jenny Hinchliffe, Louise Price, Bronia Johnson, Wendy Smith, Di Rigby 2 Document July 2014 Jane Bake, Louise Price, Jayne Unwin, Wendy Smith, Gaynor Edwards, Carol Gent, Jo Hagen and Cheryl Kern 2.1 Extended August 2016 Corporate Assurance Team 3 Reviewed Updated to include new initiatives, developments, and changes to services. 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 Telephone numbers and referral forms updated January-June 2017 July 2017 Kay Howard, Teresa McNally (LCHS) Julie Bishop, Louise Price, Lawrence Pike (St Barnabas Hospice) Jayne Unwin (Marie Curie) Copyright 2017 Lincolnshire Community Health Services NHS Trust, All Rights Reserved. Not to be reproduced in whole or in part without the permission of the copyright owner. 2

Lincolnshire Community Health Services NHS Trust St Barnabas Hospice United Lincolnshire Hospitals NHS Trust Marie Curie Care Standard Operating Procedure for Access to Out Of Hours Care for Adults with Palliative and End of Life Care Needs Policy Statement Purpose The purpose of this SOP is to: Provide consistent, rapid access to palliative and end of life care across Lincolnshire in the out of hours period Provide direct access to palliative care Simplify and clarify the process that enables people to receive the right care at the right time by the most appropriate clinician Statement Responsibilities Training Dissemination Consultation This SOP supports staff, patients and carers to make individual decisions about the requirement for direct access to doctors and specialist palliative care in the out of hours period. Within Lincolnshire, the health care community is committed to the delivery of palliative and end of life care in a non discriminatory way to ensure equity of access to high quality services. It is recognised that there is continuing work within End of Life care that will link into this SOP. Compliance with this SOP will be the responsibility of all health care staff within Lincolnshire who care for adults with palliative and end of life care needs. It is the responsibility of each of the organisations, through their own governance procedures, to disseminate the SOP to their own staff. A copy of this procedure will be available for all staff on trust intranet sites and the End of Life Care website Lincolnshire specific pages. Lincolnshire and Borders Palliative and End of Life Group 3

Procedure for accessing out of hour care for adults with palliative and end of life care needs Lincolnshire Community Health Services NHS Trust Standard Operating Procedure for Access to Out Of Hours Care for Adults with Palliative and End of Life Care Needs i. Version control sheet ii. Policy statement Contents 1 Identification of patient 5 2 Issuing of OOH/ Marie Curie Rapid Response Card 5 3 Contact with OOH or Marie Curie Rapid Response 6 4 Communication 6 Page 5 Pathway for access to OOH care for adults with palliative and 7 end of life care needs Appendix 1 Contact numbers for direct access to OOH practitioners 8 Appendix 2 Responsive Needs Tool 9 Appendix 3 Palliative Care Out of Hours and Rapid Response Service 12 Handover Form Appendix 4 Referral to MCRR for planned care 13 Appendix 5 Equality Impact Assessment Test for Relevance 14 4

Identification of patient Holistic needs assessment undertaken by health professional Referral criteria for Out of Hours (OOH) Green Card/ Marie Curie Rapid Response Card: Patients aged 18 years or over requiring medical or nursing care Patients registered with a Lincolnshire GP The clinician will answer no to the intuitive question Would you be surprised if this patient were to die in the next 6 12 months? (Prognostic Indicator Guidance, the Gold Standard Framework) Palliative care patients with medical, nursing, social or symptom management needs, either physical or psychological Patients on the Gold Standard Framework/palliative care register (in the last year of life) and with a Responsive Needs Tool Score 21+ (level 2) See Appendix 2 Where Systmone record system used an holistic assessment should be completed The EPaCCs template should be completed and consent gained from the patient to share Pre-emptive medication prescribed and authority to administer (CD1 Gold Form) in place where appropriate Carers requiring psychological or spiritual support (provided by Marie Curie Rapid Response (MCRR)) Advice and support for generalists working in the OOH period Referral for planned care MCRR service only see Appendix 4 Issuing of OOH/ Marie Curie Rapid Response Card Card issued with contact number for direct access to OOH Practitioner on one side (green) and Marie Curie Rapid Response specialist palliative care nursing service on the other (gold). NB. Contact numbers for direct access to OOH will differ across Lincolnshire and are found in Appendix 1 Issue of the OOH card will be supported by an information leaflet about the MCRR service and hours of operation (Monday to Friday 4pm to 8am, weekends and bank holidays 24hrs/day), and information about the OOH Service (Monday to Friday 6.30pm to 8am, weekends and bank holidays 24hrs/day) to ensure the patient and carer are aware of when and why they should access these services. Record issue of card on Systmone, EPaCCs template or in the patient s case notes. Complete the Palliative Care Out of Hours and Rapid Response Service handover form found in Appendix 3 and email via nhs.net or fax to OOH service and Marie Curie Rapid Response. 5

Contact with OOH or Marie Curie Rapid Response Call received by either OOH Practitioner or MCRR Service. Patient information accessed on Systmone template where available. Clinical decision made regarding response to be taken. Options: 1. Telephone advice/support provided by OOH Practitioner or Marie Curie Rapid Response Nurse to patient or to informal or formal carer 2. Marie Curie Rapid Response visit or visit by OOH Practitioner or Doctor. The response times aimed for are: a. MCRR times are; one hour for Urgent Face to face and two hours for Non Urgent Face to Face. b. OOH times aimed for are; two hrs for Urgent Face to Face and six hours for Non Urgent Face to Face. 2. Appointment in the OOH centre arranged 3. Advise to dial 999 if appropriate after discussion with OOH or MCRR Communication Notification of contact and handover by MCRR nurse and/or OOH Clinician to: GP practice Community nursing team/specialist nurse St Barnabas Hospice if involved Palliative Care Coordination Centre (PCCC) The Pathway for Information Sharing between the PCCC, MCRR and Community Nursing Teams found in Appendix 5 will be followed. 6

PERSON RECOGNISED WITH EOL/ PALLIATIVE CARE NEEDS REQUIRES UNPLANNED CARE DURING OOHs PERIOD 16.00 08.00 MONDAY FRIDAY 24/7 SATURDAY / SUNDAY / BAND HOLIDAY GREEN CARD MARIE CURIE RAPID RESPONSE NUMBER OOHS DIRECT NUMBER MARIE CURIE RAPID RESPONSE Person can speak directly to clinician Tel: 0845 055 0709 OUT OF HOURS SERVICE Calls in to local base. Person is put onto SYS1 and case put on CAS as green card Clinician calls person back Needs prescription OOHs local base supports MCCR Lincoln area OOH Service 01522 512303 Louth area OOH service 01507 602905 Boston area OOH Service 07920 190869 Grantham area OOH Service 01476 464625 Stamford area OOH Service 07920 089095 Skegness Area OOH Service 07774 739042 Further advice is available from the in-patient unit at St Barnabas Tel: 01522 511566 HOME VISIT Marie Cure Rapid Response Out of Hours Practitioner Hospice at Home (daytime weekend) Community Nurse (daytime weekend) TELEPHONE SUPPORT AND ADVICE 7 Refer for appropriate follow up by planned care (GP / Community Nursing)

Appendix 1 Contact number for direct access to OOH Practitioners Lincoln area OOH Service 01522 512303 Louth area OOH Service 01507 602905 Boston area OOH Service 01205 445434 or 07881635431 Grantham area OOH Service 01476 464625 Stamford Area OOH Service 07920 089095 Skegness Area OOH Service 07774739042 8

APPENDIX 2 Level and score Level 4 Responsive Need Tool (RNT) to be used in conjunction with RNT scoring aid Description of level Care requirements/plan Patient s condition is deteriorating rapidly towards the end of life with Care delivered by specialists and generalists Score 31 - frequent changes in condition noted In addition to care provided by key 44 Without intervention, admission to worker/community team up to three hospital or crisis is inevitable visits/contacts a day from specialist Intervention will enable preferred palliative care providers place of care/death Registered professional / key worker uses the scoring tool to reassess the patient weekly, or in the event of significant change, and informs Palliative Care Coordination Centre, PCCC so care package can be arranged Consider EPaCCS (Electronic Palliative Care Coordination System) Level 3 Patient s condition is deteriorating with weekly changes to condition Care delivered by specialists and generalists Score 26 - noted In addition to care provided by key 30 Without intervention, admission or worker/community team from three crisis is probable or possible. visits/contacts a week up to daily contact Patient is at risk of worsening by specialist palliative care providers quickly Registered professional / key worker uses Intervention will enable preferred place of care/death the scoring tool to reassess the patient weekly, or in the event of significant change, and informs PCCC so care package can be arranged Consider EPaCCS Level 2 Score 21-25 Patients condition is deteriorating with changes to condition noted over several weeks/ monthly Consider referral to : St Barnabas Day Therapy Services and/or Hospice at Home services via PCCC Intervention is required to support Tel: 08450 550708 patient in preferred place of care and anticipate and address future changing care needs ( e.g. Advance Care Plan) Care delivered by specialists and generalists. In addition to care provided by key worker/community team up to two visits/contacts a week by specialist palliative care providers Registered professional / key worker uses the scoring tool to reassess the patient weekly, or in the event of significant change, and informs PCCC so care package can be arranged Consider referral for carer s assessment Consider EPaCCS Level 1 Patient is asymptomatic or symptoms are well managed and Care delivered by generalists if required in patient home Score less stable Consider referral to St Barnabas Hospice than 21 Patient and carer are coping and Day Therapy aware of how to access support in Consider referral for carer s assessment case of change Consider EPaCCS If your professional judgement is that patient is of a higher/lower level and you can justify this please alter level indicated by the scores and inform PCCC of this professional judgement. October 2015 9

Responsive Need Tool scoring aid (to be used in conjunction with RNT) Prognostic indication More than six months 1 Less than six months 2 Less than two months 3 Within two weeks 4 Age 74 + under 0 75 + over 1 Co-morbidities Long-term illness 0 More than one long-term illness/long-term co-morbidity 1 Deterioration status Stable 0 Monthly changes 1 Weekly changes 2 Daily changes 3 Hospital admissions No unplanned admissions in the last three months 0 (approximate) One or two unplanned admissions in last three months 1 One or two unplanned admissions in last month 2 More than two unplanned admissions in last month 3 Symptoms (physical ) Asymptomatic or well controlled 0 Generally well controlled/needs weekly monitoring /one 1 symptom Two or more symptoms needing daily monitoring 2 Two or more symptoms not controlled or requiring s/c meds 3 Psychological needs Coping well, no psychological needs 0 Generally coping, mood changes consistent with illness, needs 1 met by current support network Psychological symptoms that require intervention. Psychological 2 distress is impacting on patient wellbeing Psychological problems requiring continuous support and/or 3 specialist input to address distress/anguish Fatigue/Conscious Conscious, but tires easily 1 level Conscious, but spends less than half the day sleeping/resting 2 Conscious, but spends more than half the day sleeping/resting 3 Semi-conscious/ unconscious 4 Personal hygiene Fully independent 0 Partially Independent/has established social care package to support patient/ needs assistance of one carer for personal care (any of these) Needs assistance of two to meet personal care needs 2 Needs full assistance/ hygiene needs met while patient in bed 3 Eating and drinking Appetite unaffected 0 Still eats three meals a day, although quantity of intake may be 1 reduced Reduced eating and drinking where nutrition an issue: e.g. 2 snacking only /may be on supplements Minimal intake, sips/ nil by mouth 3 Mobility Independent, still able to get outdoors 0 Independent, but generally housebound 1 Needs assistance/support /able to transfer only e.g. bed-chair 2 Bed bound 3 Performance Score Karnofsky Performance Score 90 100 relatively fit / well 1 Score 60 80 not regularly active/ symptoms limit activity, not 2 dependent on others all of the time 1 10

Scale (AKPS) see scoring guidelines below Score 40 50 Mildly-moderately frail, frailty progressing, requires considerable assistance with ADLs or in bed some of the time Score 0 30 Severely frail / bed bound/ terminally ill/ completely dependent for personal care Cognition Full mental capacity /no memory problems 0 Mild cognitive impairment/memory problems/potentially 1 reversible Moderate cognitive impairment/ memory problems/fluctuating 2 mental capacity No mental capacity/ severe cognitive impairment 3 Carer/Next of Kin Carer/NOK has good informal support/long established care 1 (NOK) (relates to carers package Carer/NOK able to cope but needs weekly professional support 2 coping) Carer/NOK needing increased professional support/limited 3 informal support available Carer/ NOK unable to cope without professional support/ high 4 risk carer breakdown requires carers assessment Spirituality/Future Future preferences and wishes/spiritual needs addressed 1 planning Future preferences and wishes/spiritual needs require 2 (Advance Care Planning) assessment/review Future preferences and wishes/spiritual needs require planned 3 intervention Requires urgent intervention for unresolved issues 4 Total score Total Australia-modified Karnofsky Performance Scale (AKPS) assessment criteria Normal; no complaints; no evidence of disease 100 Able to carry on normal activity; minor sign of symptoms of disease 90 Normal activity with effort; some signs or symptoms of disease 80 Cares for self; unable to carry on normal activity or to do active work 70 Able to care for most needs; but requires occasional assistance 60 Considerable assistance and frequent medical care required 50 In bed more than 50 per cent of the time 40 Almost completely bedfast 30 Totally bedfast and requiring extensive nursing care by professionals and/or family 20 Comatose or barely rousable 10 Dead 0 Function as per Karnofsky score High Function Moderate Function Low Function 3 4 APPENDIX 3 MARIE CURIE RAPID RESPONSE SERVICE INFORMATION FORM NAME D.O.B DIAGNOSIS OTHER CONDITIONS N.H.S.NO. 11

ADDRESS POSTCODE TEL NO. PERSONNEL INVOLVED FAMILY/CARER CONTACT DETAILS WHO IS AWARE OF DIAGNOSIS PROGNOSIS - CARE PLAN DETAILS D.N./C.M. A.C.P Y/N G.P/Surgery A.D.R.T Y/N Details - Tel no. - MACMILLAN NURSE ST BARNABAS H@H TEAM Y/N MARIECURIE NIGHT CARE Y/N D.N.A.C.P.R. Y/N P.C.C.C Y/N R.N.T LEVEL - TREATMENT CURRENT MEDICATION- ALLERGIES PRE EMPTIVE MEDICATION AVAILABLE, WITH APPROPRIATE GOLD SHEETS Please list Meds - CURRENT PROBLEMS AND ISSUES- PREFERRED PLACE OF CARE (dated) PREFERRED PLACE OF DEATH (dated) PLEASE BE AWARE WE DO NOT HAVE ACCESS TO S1 AT ALL BASES AND FOR EASE OF PT CARE WE REQUIRE FULL DETAILS of ABOVE INFORMATION RATHER THAN SEE S1. Thank you. Completed by - Tel no - Service - Date FAX NUMBER 01205 446017 OR email mariecurie.rrslincs@nhs.net APPENDIX 4 Referral for Planned Care Marie Curie Rapid Response Service (MCRRS) ONLY The MCRRS can provide short term planned care for adult palliative care patients during their hours of operation, to support a patient s choice to remain at home. Referral Criteria As previously documented in this SOP, however in addition referrals for patients with a Responsive Need Tool level 1 will be accepted Planned care will be restricted to four days. Any exceptions will be at the MCRRS Clinical Nurse manager s discretion 12

Referral Process Referring clinician to telephone 08450550709, to speak to MCRRS nurse to negotiate arrangements Examples of Planned Care This list is not exhaustive; patient s need should be discussed on an individual basis with the MCRRS nurse. When a request for a care package is unmet Delivery of hospital bed is only available during OOHs, will attend to assist transfer of patient When drugs are not available for administration until the OOHs period, will attend to administer or commence syringe driver Support discharge of a patient, returning home during OOHs Support services to deliver care when capacity is affected (inclement weather, staff shortage) Support for the patient and family when there is An Individualised End of Life Care Plan in place. 13

Equality analysis Appendix 5 Title: Standard Operating Procedure for Access To Out of Hours Care for Adults with Palliative and End of Life Care Needs Relevant line in: Palliative and end of life care What are the intended outcomes of this work? Include outline of objectives and function aims The purpose of this SOP is to: Provide consistent, rapid access to palliative and end of life care across Lincolnshire in the out of hours period Provide direct access to specialist palliative care Simplify and clarify the process for patients and carers to facilitate choice and ensure they receive the right care at the right time by the most appropriate clinician Ensure direct access avoiding unnecessary delays Ensure that best practice is achieved at all times Provide clear guidance regarding the accountability and role of all staff involved in the process. Who will be affected? e.g. staff, patients, service users etc Staff, patients and carers Evidence The Government s commitment to transparency requires public bodies to be open about the information on which they base their decisions and the results. You must understand your responsibilities under the transparency agenda before completing this section of the assessment. What evidence have you considered? List the main sources of data, research and other sources of evidence (including full references) reviewed to determine impact on each equality group (protected characteristic). This can include national research, surveys, reports, research interviews, focus groups, pilot activity evaluations etc. If there are gaps in evidence, state what you will do to close them in the Action Plan on the last page of this template. This SOP supports staff, patients and carers to make individual decisions about the requirement for direct access to doctors and specialist palliative care in the out of hours period. Within Lincolnshire, the health care community is committed to the delivery of palliative and end of life care in a nondiscriminatory way to ensure equity of access to high quality services. Disability Consider and detail (including the source of any evidence) on attitudinal, physical and social barriers. Sex Consider and detail (including the source of any evidence) on men and women (potential to link to carers below). Race Consider and detail (including the source of any evidence) on difference ethnic groups, nationalities, Roma gypsies, Irish travellers, language barriers. Age Consider and detail (including the source of any evidence) across age ranges on old and younger people. This can include safeguarding, consent and child welfare. Gender reassignment (including transgender) Consider and detail (including the source of any evidence) on transgender and transsexual people. This can include issues such as privacy of data and harassment. 14

Sexual orientation Consider and detail (including the source of any evidence) on heterosexual people as well as lesbian, gay and bi-sexual people. Religion or belief Consider and detail (including the source of any evidence) on people with different religions, beliefs or no belief. Pregnancy and maternity Consider and detail (including the source of any evidence) on working arrangements, part-time working, infant caring responsibilities. Carers Consider and detail (including the source of any evidence) on part-time working, shift-patterns, general caring responsibilities. Other identified groups Consider and detail and include the source of any evidence on different socio-economic groups, area inequality, income, resident status (migrants) and other groups experiencing disadvantage and barriers to access. Engagement and involvement Was this work subject to the requirements of the Equality Act and the NHS Act 2006 (Duty to involve)? No How have you engaged stakeholders in gathering evidence or testing the evidence available? This work was led by the Lincolnshire Palliative and End of Life Care Collaborative Forum with representation from health and social care providers, private and 3 rd sector providers, EMAS and patient/carer representation. How have you engaged stakeholders in testing the policy or programme proposals? All stakeholders were involved in the development of the SOP. For each engagement activity, please state who was involved, how and when they were engaged, and the key outputs: An options appraisal was conducted by the Lincolnshire Palliative and End of Life Care Collaborative Forum with the pathway outlined in the SOP scoring highest for patient/carer choice and equity of access to care. Summary of Analysis Considering the evidence and engagement activity you listed above, please summarise the impact of your work. Consider whether the evidence shows potential for differential impact, if so state whether adverse or positive and for which groups. How you will mitigate any negative impacts. How you will include certain protected groups in services or expand their participation in public life. The work undertaken will ensure consistency across the county and equity of access to care. Now consider and detail below how the proposals impact on elimination of discrimination, harassment and victimisation, advance the equality of opportunity and promote good relations between groups. Eliminate discrimination, harassment and victimisation Where there is evidence, address each protected characteristic (age, disability, gender, gender reassignment, pregnancy and maternity, race, religion or belief, sexual orientation). Advance equality of opportunity Where there is evidence, address each protected characteristic (age, disability, gender, gender reassignment, pregnancy and maternity, race, religion or belief, sexual orientation). 15

Promote good relations between groups Where there is evidence, address each protected characteristic (age, disability, gender, gender reassignment, pregnancy and maternity, race, religion or belief, sexual orientation). What is the overall impact? Consider whether there are different levels of access experienced, needs or experiences, whether there are barriers to engagement, are there regional variations and what is the combined impact? Addressing the impact on equalities Please give an outline of what broad action you or any other bodies are taking to address any inequalities identified through the evidence. Action planning for improvement Please give an outline of the key actions based on any gaps, challenges and opportunities you have identified. Actions to improve the policy/programmes need to be summarised (An action plan template is appended for specific action planning). Include here any general action to address specific equality issues and data gaps that need to be addressed through consultation or further research. Please give an outline of your next steps based on the challenges and opportunities you have identified. Include here any or all of the following, based on your assessment Plans already under way or in development to address the challenges and priorities identified. Arrangements for continued engagement of stakeholders. Arrangements for continued monitoring and evaluating the policy or service for its impact on different groups as the policy\service is implemented (or pilot activity progresses) Arrangements for embedding findings of the assessment within the wider system, other agencies, local service providers and regulatory bodies Arrangements for publishing the assessment and ensuring relevant colleagues are informed of the results Arrangements for making information accessible to staff, patients, service users and the public Arrangements to make sure the assessment contributes to reviews of DH strategic equality objectives. For the record Name of person who carried out this assessment: Kay Howard, Teresa McNally (LCHS Date assessment completed: July 2017 Name of responsible Director/Director General: Lisa Green 16