I write in response to your request for information in relation to palliative care services in NHS Lothian.

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1 Lothian NHS Board = Waverley Gate 2-4 Waterloo Place Edinburgh EH1 3EG = Telephone: Date: 13/01/2016 Our Ref: 581 Enquiries to : Bryony Pillath Extension: Direct Line: bryony.pillath@nhslothian.scot.nhs.uk Dear FREEDOM OF INFORMATION PALLIATIVE CARE I write in response to your request for information in relation to palliative care services in NHS Lothian. Question: 1. Do you provide and/or commission a 24/7 dedicated and clinically staffed palliative service specifically designed for patients dying at home, and their carers? Answer: Yes, NHS Lothian provides palliative care services for end of life care at home for both children and adults. Question: 2. Please complete the table (see the second attachment to this ) detailing which specific palliative services you provide and/or commission, the hours of operation and geographic areas that they cover for NB. For the purposes of our research, we would only consider you to commission these palliative services listed in the table if they are specifically designed for patients dying, and their carers, as opposed to a more general service that might only incidentally cover end of life care. Answer: I have enclosed the completed table with regard to adult palliative care services in NHS Lothian. For children s services Care 24 provision, please see the attached overview of the service. Question: 3. What is your annual budget for all dedicated end of life care services provided and commissioned for the current financial year, ? If it is impossible for you to give a precise figure for whatever reason, please give a best estimate. Answer:

2 581 Palliative Care January 2016 The annual budget for dedicated Palliative Care Services and support to hospice provision for the year is 5.5 million. Other services also provide elements of palliative care, but it is not possible to separate these costs from the other costs of these services. Question: 4. What is this as a % of your total budget? Again, if you cannot give a precise figure here, please give a best estimate. Answer: Based on NHS Lothian s current Total Scottish Government Revenue Resource Allocation, the dedicated Palliative Care Services element of spending is 0.40% of NHS Lothian s total budget allocation by the Scottish Government. Question: 5. Do you work in partnership with other organisations to deliver palliative care services in the community? If yes, state who the lead provider is. Answer: Children s Services For adults palliative care services, NHS Lothian works with the Lothian Marie Curie Hospice Nursing Team, the Marie Curie Hospice, St Columbus Hospice, Macmillan Nurses East Lothian and West Lothian Macmillan / Marie Curie Team. For children s palliative care services, NHS Lothian works with the following organisations: - Continuing Care Service (Sunndach House and Calareidh House). These are two purpose built residential facilities that can be used as step down discharge from hospital, or preferred place of care for end of life. Both houses employ registered nursing and healthcare support worker staff and provide palliative and end of life care; - Children s Hospice Association Scotland (CHAS). For delivery of the Care 24 palliative care at home service. CHAS provide the out of hours support to patients and carers days a week. NHS Lothian Children s Community Services provides the part of the service; - Lothian Paediatric Outreach Service. Provides support to children and parents or carers within the child s home where the child has increased levels of nursing needs, and to support the child attending school where they require 1:1 care. All children with palliative care needs will be supported to continue to attend their education facility as long as they are physically able. This is to maintain the relationship with peers and Page 2 of 3

3 581 Palliative Care January 2016 improve quality of life. This is funded by the Lothian Paediatric Outreach Service (NHS Lothian) with a contribution by the respective local council education department. I hope the information provided helps with your request. If you are unhappy with our response to your request, you do have the right to request us to review it. Your request should be made within 40 working days of receipt of this letter, and we will reply within 20 working days of receipt. If our decision is unchanged following a review and you remain dissatisfied with this, you then have the right to make a formal complaint to the Scottish Information Commissioner. If you require a review of our decision to be carried out, please write to the FOI Reviewer at the address at the head of this letter. The review will be undertaken by a Reviewer who was not involved in the original decision-making process. FOI responses (subject to redaction of personal information) may appear on NHS Lothian s Freedom of Information website at: Yours sincerely ALAN BOYTER Director of Human Resources and Organisational Development Cc: Chief Executive Page 3 of 3

4 SERVICES Table 1 - Services for SERVICES FOR PATIENTS: DO YOU COMMISSION THIS SERVICE? Tick if yes NB. Only tick services specifically catering for patients dying at home, and their carers; as opposed to general services that might only incidentally cover end of life care. WHAT TIME DOES THIS PARTICULAR SERVICE OPERATE? e.g.1 9am-5pm, 7 days a week e.g.2 24/7 WHAT GEOGRAPHICAL AREA DOES THIS SERVICE COVER? Palliative district nursing District Nursing Service (day, evening & overnight) specifically provides care for patients dying at home. 24/7 Lothian Palliative clinical nurse specialist This can be complemented by additional care via the Lothian Marie Curie Nursing Service Marie Curie Hospice Edinburgh St Columbus Hospice 24/7 9am-5pm, 7 days a week 9am-5pm, 7 days a week Lothian South Edinburgh & Midlothian North Edinburgh Macmillan Nurses East Lothian 9am-5pm, 5 days a week East Lothian West Lothian Macmillan /Marie Curie Team 9am-5pm, 5 days a week West Lothian Clinical face-toface advice There is also an acute hospital specialist palliative care team that support timely discharges for those who wish to die at home. District Nursing Service Palliative Clinical Nurse Specialists 24/7 9am-5pm, 7 days a week 9am-5pm, 5 days a week Lothian Edinburgh, Midlothian East & West Lothian GPs and Consultants in Palliative Medicine 24/7 Lothian FOI Request 581, NHS Lothian, 11 January 2016

5 SERVICES Community nurse team leader DO YOU COMMISSION THIS SERVICE? Tick if yes NB. Only tick services specifically catering for patients dying at home, and their carers; as opposed to general services that might only incidentally cover end of life care. Each of the 4 teams above have an identified lead nurse WHAT TIME DOES THIS PARTICULAR SERVICE OPERATE? e.g.1 9am-5pm, 7 days a week e.g.2 24/7 9am-5pm, 5 days a week WHAT GEOGRAPHICAL AREA DOES THIS SERVICE COVER? Lothian Nurse Consultant Cancer & Palliative Care 9am-5pm, 5 days a week Lothian Palliative care support worker Rapid intervention service Hospice at home Day hospice Lead GP Palliative Care Via the Lothian Managed Care Marie Curie Nursing Service Marie Curie Hospice Edinburgh 1 day a week Lothian 24/7 Lothian 9am-5pm, 7 days a week South Edinburgh and Midlothian St Columbus Hospice West Lothian Macmillan /Marie Curie Team 9am-5pm, 7 days a week 9am-5pm, 5 days a week North Edinburgh West Lothian Palliative social care workers Dedicated online palliative information and advice Marie Curie Hospice Edinburgh 9am-5pm, 5 days a week South Edinburgh & Midlothian St Columbus Hospice 9am-5pm, 5 days a week North Edinburgh NHS Inform Palliative Care Zone 24/7 Scotland Dedicated palliative, nurse staffed expert telephone helpline FOI Request 581, NHS Lothian, 11 January 2016

6 SERVICES Signposting service Palliative care coordination centre Peer Support DO YOU COMMISSION THIS SERVICE? Tick if yes NB. Only tick services specifically catering for patients dying at home, and their carers; as opposed to general services that might only incidentally cover end of life care. Lothian Managed Care Marie Curie Nursing Service is co-ordinated locally WHAT TIME DOES THIS PARTICULAR SERVICE OPERATE? e.g.1 9am-5pm, 7 days a week e.g.2 24/7 9am-5pm, 7 days a week WHAT GEOGRAPHICAL AREA DOES THIS SERVICE COVER? Lothian Befriending Other - please specify SERVICES FOR CARERS : Carers for people at the end of life support Palliative Care District Nursing Service, Palliative Clinical Nurse Specialists 24/7 9am-5pm, 5 days a week Lothian East and West Lothian Lothian Marie Curie Nursing Service 24/7 Lothian Dedicated online palliative information and advice all specifically provide support for those caring for people at the end of life. NHS Inform Palliative Care Zone 24/7 Scotland FOI Request 581, NHS Lothian, 11 January 2016

7 SERVICES Dedicated palliative, nurse staffed expert telephone helpline End of life peer support carers groups End of life befriending DO YOU COMMISSION THIS SERVICE? Tick if yes NB. Only tick services specifically catering for patients dying at home, and their carers; as opposed to general services that might only incidentally cover end of life care. WHAT TIME DOES THIS PARTICULAR SERVICE OPERATE? e.g.1 9am-5pm, 7 days a week e.g.2 24/7 WHAT GEOGRAPHICAL AREA DOES THIS SERVICE COVER? Respite Other, please specify FOI Request 581, NHS Lothian, 11 January 2016

8 Framework for the Delivery of 24 Hour End of Life Care at Home for Children and Young People (Care 24)

9 THIS DOCUMENT MUST NOT BE COPIED 1. Purpose of this document To provide clear guidance for the delivery of a shared care service between NHS Lothian and the Children s Hospice Association Scotland (CHAS) for children and young people (CYP) who are identified as entering the end of life stage of their condition and family have chosen care during this time, to be delivered at home. For the purpose of this document reference to children and young people (CYP) also includes babies. 2. Who should use this document? Nursing, medical, primary care staff, and any other professionals supporting care for children and young people at end of life. 3. Who is the service for? Children and young people recognised as having reached the end of life stage of their condition; choosing delivery of care at home during this time, and living within NHS Lothian boundaries. 4. Contact point: NHS Lothian:, Clinical Nurse Manager NHS Lothian: Team Leader, Community Children s Nursing Service NHS Lothian:, Team Manager, Paediatric Oncology Outreach Nursing Service NHS Lothian:, Senior Clinical Nurse Specialist, Children & Young People s Palliative Care CHAS:, Clinical Nurse Manager 5. Further reference: 6. Review group: NHS Lothian Community Children s Nursing Service NHS Lothian Paediatric Oncology Outreach Nursing Service NHS Lothian Senior Clinical Nurse Specialist, Children & Young People s Palliative Care CHAS Nursing Team Rachel House Children s Hospice, Clinical Nurse Manager 7. Review Date: July 2016 Ref No: Issue Date: July 2015 Review Date: July 2016 Published by: Level: Ratified by: CMT ADMD CN Issuing Officer: Andrew Muir Signature: Signature:

10 Contents: Introduction Page 4 Service Provision Page 5 Outcomes: Page 5 Who is this service for Page 6 Referral to Care 24 Page 6 Medical Support for the Service Page 6 Key providers of the service Page 6 Additional Support Available Page 7 References Page 7 Appendix 1: How to refer to Care 24 Appendix 2: Care 24: Professional Planning Meeting (Agenda) Appendix3: Care 24: Role of the Lead Clinician Appendix 4: Care 24: Advice and Flow Chart for On Call Medical Staff

11 INTRODUCTION All children and young people (CYP) within NHS Lothian, who are recognised as entering the end of life phase of their illness, deserve high quality end of life care, delivered in the place of their choice. This partnership working between Children s Hospice Association Scotland (CHAS) and Children s Services within NHS Lothian, aims to provide 24 hour, home based care at the end of life for children and young people living within NHS Lothian. This framework details how NHS Lothian Community Children s Nursing Service, NHS Lothian Senior Clinical Nurse Specialist (Children and Young People s Palliative Care), Paediatric Oncology Outreach Nursing Service and Children s Hospice Association Scotland (CHAS) specifically Rachel House Children s Hospice care team, will work together to deliver this service. This joint service will be from here on referred to as Care 24. The keys principles of the following documents underpin the service to ensure safe, effective and person centered care: Getting it Right for Every Child (GIRFEC) Framework 1 Living and Dying Well (2008): a national action plan for palliative and end of life care in Scotland 2 Living and Dying Well Building on Progress(2011) 3 A framework for the delivery of palliative care for children and young people in Scotland (2012): Scottish Children and Young People s Palliative Care Executive Group 4 A Core Care Pathway for Children with Life-Limiting and Life Threatening Conditions(2013): Together for Short Lives 5 Standards framework for children s palliative care(2013) Together for Short Lives 6 The Anticipatory Care Plan (ACP) and Child and Young Person Acute Deterioration Management (CYPADM) form are tools used as part of overall advanced care planning for any CYP with a life limiting condition and are integral to ensuring person centered care 3. It includes capturing resuscitation planning and choice for care during episodes of acute deterioration and at end of life. An ACP is used for proactive planning and can help improve the management of symptoms, enhance quality of life for a child or young person and their family, helping to prevent crisis situations and unscheduled admissions to hospital 2. In palliative care it is acknowledged that diagnosing the exact timing of the end of life phase is not always straightforward. The disease trajectory of cancer is generally recognisable with a steady progression of the disease and more predictable end of life phase 7. Where in non-malignant disease, episodes of deterioration can fluctuate making diagnosing end of life phase less predictable and therefore all end of life care planning requires to be reviewed on a 24 hour basis. Framework for the Delivery of 24 Hour End of Life Care at Home NHS Lothian Children s Services and CHAS May 2015 Final Version V0.8 Review date July 2016 Page 4 of 13

12 SERVICE PROVISION Where there has been an identified wish for the child or young person (CYP) to die in their own home, Care 24 will provide access to 24 hour direct care delivery, advice and support including the following: An identified Lead Professional from NHS Lothian to coordinate the service for the CYP and their family Care assessment and planning Co-ordination and collaboration of care Planned periods of nursing care from NHS Lothian and CHAS Access to advice throughout the 24 hours Managing complex situations and emotional support Co-ordination of supplies and equipment Active & anticipatory management of deterioration and symptoms Teaching and education A nurse from the Community Children s Nursing Service will generally be identified as the Lead Professional for each case and will coordinate the service for families in Lothian. The Paediatric Oncology Outreach Service will be the Lead Professional when the CYP has an oncology diagnosis. The teams within Care 24 work closely to ensure families receive the care they require. Families can expect to have access to care and support as identified throughout the day and night. The key provider throughout the week, Monday to Sunday are: Community Children s Nursing Service available from CHAS (Rachel House Children s Hospice team) available from In the instance when families choose not to be referred to CHAS, the Lead Professional will co-ordinate support out with Care 24. OUTCOMES The partnership will provide consistent high quality care and support, by staff with the appropriate expertise and families will have choice over their preferred place of care at the end of life. Framework for the Delivery of 24 Hour End of Life Care at Home NHS Lothian Children s Services and CHAS May 2015 Final Version V0.8 Review date July 2016 Page 5 of 13

13 WHO THE SERVICE IS FOR The service is available to children and young people and their families who have identified that their preferred place for end of life care is at home and that the child or young person is: Aged from birth to their 16 th birthday Living within NHS Lothian boundaries Recognised as entering the last weeks/days/hours of life For young people aged 16 years and over, the NHS Lothian District Nursing Service will coordinate and provide end of life care. Referrals should be made directly through the young person s General Practitioner. The District Nursing Service will liaise and make referrals, if appropriate, to Marie Curie Nursing Service and Macmillan Cancer Support. Both services provide support and advice alongside the District Nurses. (NB: CHAS continues to support young people up to the age of their 21st birthday). REFERRAL TO Care 24 OPERATIONAL DETAILS ABOUT HOW THE SERVICE WILL BE DELIVERED Referrals for this service can be made by any professional working closely with the family but this must be in consultation and agreement with the child or young person s Lead Clinician and the family. Referral should be made to the NHS Lothian Community Children s Nursing Service. Please see: Appendix 1. MEDICAL SUPPORT FOR THE SERVICE This is a nurse led service and anticipatory care planning is core to effective delivery of care. However, medical support through telephone advice and guidance will also be available throughout the 24 hour period from the appropriate medical team. Clinical team providing medical support will be identified on specialty and point of referral e.g. oncology, neurology, neonatology, or CHAS Medical Team and agreed at the start of any planned care. Please see: Appendix 3 and 4. KEY PROVIDERS OF THE SERVICE The teams providing this service are: NHS Lothian Community Children s Nurses NHS Lothian Senior Clinical Nurse Specialist, Children & Young People s Palliative Care NHS Lothian Paediatric Oncology Outreach Nurses CHAS Senior Nursing Team, Rachel House Children s Hospice Identified Lead Clinician Framework for the Delivery of 24 Hour End of Life Care at Home NHS Lothian Children s Services and CHAS May 2015 Final Version V0.8 Review date July 2016 Page 6 of 13

14 In partnership with the child, young person and their family, a Lead Professional will be identified. The role of the Lead Professional is to be the single point of contact for the team around the child, young person, and their family ensuring effective co-ordination and provision of care. Please see: Appendix 2: Care 24 Professional Planning Meeting Agenda ADDITIONAL SUPPORT AVAILABLE WITHIN NHS LOTHIAN: Pain Management Service: Royal Hospital for Sick Children Allied Health Professionals Lothian Exceptional Needs Support Group (LENS) Continuing Care Service (Calareidh & Sunndach) REFERENCES 1. Scottish Government (2012) Getting it right for children and families: a guide to getting it right for every child. Available at: 2. Scottish Government (2008) Living and dying well: a national action plan for palliative and end of life care in Scotland. Scottish Government publications. 3. Scottish Government (2011) Living and dying well: Building on Progress. Available at: 4. Scottish Government (2012) A framework for the delivery of palliative care for children and young people in Scotland: Scottish Children and young People s Palliative Care Executive Group (SCYPPEX) available at: 5. Together for Short lives (2013) A Core Care Pathway for Children with Life-Limiting and Life Threatening Conditions. Available at: O NLINE_.pdf 6. Together for Short Lives (2013) Standards framework for children s palliative care. Available at: 13.pdf 7. Murray S, Kendall M, Boyd K and Sheik A (2005) Illness trajectories and palliative care Framework for the Delivery of 24 Hour End of Life Care at Home NHS Lothian Children s Services and CHAS May 2015 Final Version V0.8 Review date July 2016 Page 7 of 13

15 Appendix 1: British Medical Journal, 330; HOW TO REFER TO CARE 24 How: By phoning NHS Lothian Community Children s Nursing Service and stating you wish to make a referral: Available hrs Monday-Saturday Direct Line: When: After discussing with the Lead Clinician, child or young person and their family and upon receiving their consent to refer them for end of life care at home Who: Any professional working closely with the child or young person What: Details required to be provided when referring to service: Referrer s name, title, contact details Patient s name and address including post code Patient s telephone number Patients CHI number Ethnic origin Diagnosis, prognosis and general condition Medication - inclusive of anticipatory medications CYP and their family s understanding of diagnosis and prognosis ACP (anticipatory care plan) status Children & Young Persons Acute Deterioration Management (CYPADM) status Any special instructions / requirements i.e. identified risks Details of professionals involved Framework for the Delivery of 24 Hour End of Life Care at Home NHS Lothian Children s Services and CHAS May 2015 Final Version V0.8 Review date July 2016 Page 8 of 13

16 Appendix 2: CARE 24 Professionals Planning Meeting AGENDA 1. Attendance 2. Confirmation of Lead Professional 3. Confirmation of Named Person 4. Past Medical History / presenting situation 5. Anticipatory Care Plan (completed by Lead Professional and Lead Clinician) 6. CYPADM (completed by Lead Clinician) 7. e-kis/e-pcs (Completed by GP) 8. Planning for Verification of CYP death 9. Planning for Certification of CYP death 10. Completion of Anticipatory Prescribing 11. Agree visiting/communication schedule for all professionals 12. Identify access to 24 hour care advice, on call clinician, 13. Agree responsible professional who will liaise with family from meeting 14. Date of next planning meeting (as per clinical need) Framework for the Delivery of 24 Hour End of Life Care at Home NHS Lothian Children s Services and CHAS May 2015 Final Version V0.8 Review date July 2016 Page 9 of 13

17 Appendix 3: Care 24 Role of Lead Clinician Identify daily Medical staff rota, to provide on-call medical advice within speciality during and out of hours and inform Community Children s Nursing (CCN) service of contact. With CYP Lead Professional, ensure: o CYPADM (is up to date / completed) o Anticipatory Care Plan (ACP) is completed (including appropriate information to support decision for home based care). Prescription of Anticipatory Medications: This allows the potential to reduce/avoid unnecessary readmission to hospital and allows family to feel more in control of the care of their child. Liaise with GP regarding ongoing prescriptions at home. The following resources can be accessed via the intranet and can support decision making: o RHSC Palliative Care Anticipatory Medications Checklist o Rainbow Children s Hospice Guidelines: Basic Symptom Control in Paediatric Palliative Care o Scottish Palliative Care Guidelines o Association of Paediatric Palliative Medicine, Master Formulary 3 rd Edition 2015 In partnership with CYP Lead Professional, ensure copies of the ACP and CYPADM and other appropriate information have been shared with: o Copies CYPADM & ACP inserted into front pages of BLUE medical notes o Updated on TRAK/SCI gateway o GP (updates e-kis/e-pcs) o Community Children s Nursing Service (CCNS) o Rachel House Children s Hospice Team (CHAS) o Ambulance Service o Other appropriate services as identified by Lead Professional and agreed with CYP and family Work closely with Lead Professional to ensure that appropriate plans are in place to support child and family Attendance at CYP planning meetings and other multidisciplinary meetings Responsible for ensuring CYP, GP is up to date with any changes to management plan Liaise with Rachel House Children s Hospice (CHAS) medical team if further specialist advice is required Framework for the Delivery of 24 Hour End of Life Care at Home NHS Lothian Children s Services and CHAS May 2015 Final Version V0.8 Review date July 2016 Page 10 of 13

18 Appendix 4: Care 24 Advice Sheet for On Call Medical Staff 1. Who may contact me? NHS 24 GP NHS Lothian Community Children s Nursing Service - Between CHAS (Rachel House Children s Hospice nursing service) Between Why may I be contacted? To provide advice and medical support to nursing and OOH GP supporting the care and symptom management of a CYP at end of life, within their home setting. NB: All measures should be taken to avoid unnecessary transfer to hospital Decision to transfer CYP to RHSC should be made by senior medical staff (Reasons for transfer to RHSC would most likely be uncontrollable symptoms or if CYP and their family have decided they wish to come into hospital) The CYP and their family s wishes have been identified that they have chosen to receive end of life care at home. Appropriate planning to support this will have already been put in place. Referral to Care 24 Service will have been activated to provide home care support 24/7 for End of Life Care. Care 24 is provided jointly between: o NHS Lothian Community Children s Nursing Service: o CHAS (Rachel House Children s Hospice): The CYP will have an Anticipatory Care Plan (ACP) and CYPADM (Details of these will be found on TRAK /SCI Store and front of blue medical notes) A clear management plan for pain/symptoms will be in place and anticipatory medications prescribed for home use Framework for the Delivery of 24 Hour End of Life Care at Home NHS Lothian Children s Services and CHAS May 2015 Final Version V0.8 Review date July 2016 Page 11 of 13

19 3. What to do if contacted for medical advice out of hours for a CYP receiving end of life care at home? (NHS Lothian ONLY) Follow the Medical Advice Flow Chart below. Framework for the Delivery of 24 Hour End of Life Care at Home NHS Lothian Children s Services and CHAS May 2015 Final Version V0.8 Review date July 2016 Page 12 of 13

20 Appendix 5: Care 24 Medical Advice Flow Chart All measures should be taken to avoid unnecessary transfer to hospital Decision to transfer CYP to RHSC should be made by senior medical staff (Reasons for transfer to RHSC would most likely be uncontrollable symptoms or if CYP and their family have decided they wish to come into hospital) Use SBAR to identify reason for call Take Full Caller Contact Details Refer to Child s ACP & CYPADM (Available on Trak /SCI Store / Front of Blue Medical Notes) Identify Specialist team involved in coordinating end of life care at home eg oncology, neurology, neonates (refer to ACP) Liaise with the on- call Consultant for relevant speciality. Discuss management of pain/symptoms (there will be someone identified for each day) If you are unclear who is the on-call Consultant then contact between: : Lothian Nurse Contact : Rachel House Children s Hospice Nurse in Charge Provide clinical advice to caller Record advice /guidance give on Trak/Clinical Notes Framework for the Delivery of 24 Hour End of Life Care at Home NHS Lothian Children s Services and CHAS May 2015 Final Version V0.8 Review date July 2016 Page 13 of 13