Marie Curie Delivering Choice Suffolk Programme

Marie Curie Delivering Choice Suffolk Programme PHASE II REPORT Proposals for review & approval by the Executive Project Board Project Team: Sandy Barron - Project Lead Manager, NHS Suffolk Kathy Middleton Administration Officer, NHS Suffolk 1

Table of contents: Chapter Page No. Executive summary 3 1. The Marie Curie Delivering Choice programme in context 7 1.1 Implementing the End of Life Strategy 7 1.2 Local strategies and local priorities 7 2. Business benefits by improving care using a whole system approach 8 2.1 Benefits Realisation 8 2.2 Current expenditure on palliative and EOL care 9 2.3 Baseline for benefits realization 9 2.4 Background and Case for Change 9 2.5 Business benefits 12 3. How the programme s proposals work together 13 4 Phase II proposals for new/ redesigned/re-provisioned services: 15 4.1 4.2 4.3 4.4 4.5 Care Pathway for palliative and end of life patients The Palliative Care Co-ordination Centre Community Based Rapid Response Service Commissioning and provision of palliative and End of life education and training Commissioning and provision of equipment for palliative and End of life care 15 21 25 27 28 Appendix 32 Phase III: commissioning and implementation planning 2

Executive Summary This report presents a number of proposals developed in Phase II of the Marie Curie Delivering Choice Programme - the Suffolk Project for review and approval by the Executive Project Board. Following the Phase I investigation, a series of work streams were proposed to improve palliative care services in Suffolk. At the Project Executive Committee meeting of 3 rd November 2010 the following work streams were approved for progression to Phase II: Work Stream 1: Improved Community Care Work Stream 2: Improved co-ordination of services and care Work Stream 3: Improved Hospital /Hospice Processes Work Stream 4: Provision of information, psychological support, spiritual and bereavement services for professionals, patients, family carers Work Stream 5: Professionals and family carers / end of life care education and training In November, 2010, working groups for each work stream were set up and a number of meetings were held to develop proposals to improve care for palliative care patients and carers. Following widespread stakeholder consultation and involvement, facilitated by the Project Team, fifteen service proposals were developed by the working groups. These have subsequently been reviewed and approved by the Stakeholder Steering Committee. The fifteen service proposals presented in this report support a whole systems improvement across Suffolk. Some of the service proposals are unique to a particular locality due to existing services and initiatives. There is an expectation that the learning from all service proposals and the additional work that has been identified as supporting the Delivering Choice Programme will be shared across the whole project sites. The 15 proposals (Appendix 1) presented for approval by the Marie Curie Delivering Choice Programme, Suffolk project, Executive Committee have evolved into 5 phase II final service proposals: Proposals for new redesigned/re-provisioned / services: I. Delivery of Co-ordinated Care II. Rapid Response Care Service III. Palliative Care Centre IV. Key worker V. Information Resource VI. End of Life register VII. Family Carer Facilitator VIII. Hospital and Hospice Pathway IX. Emergency Care Practitioner X. Discharge Pathway Framework XI. Patient Hand Held Record XII. Pathway for Family Carers Assessment XIII. Training and Education for palliative and end of life care in the community XIV. Provision of Equipment XV. Bereavement Care Phase II final service proposals Appendix 2: Service Proposal 1 - Care Pathway for end of life patients The pathway provides health and social care staff with a mechanism to provide care in a flexible and responsive way whilst still maintaining high quality care throughout the 24 hour period. The pathway is inclusive of all palliative care patients irrespective of disease type or their identified home. The implementation of the end of life care pathway will ensure that palliative care patients and their carers/families receive seamless 3

care with a coordinated multi-professional approach. Another of the key elements of the pathway is the allocation of a key worker. The pathway comprises of ten steps, each with standards attached: Raising awareness: End of life register; Allocation of key worker; Assessment; Care plan; Funding Decision: Co-ordination of care; Delivering high quality care; Care in last days of life and After death care. Service proposal 2 - : End of life Care Coordination Centre The end of life Care Coordination Centre would act as a single point of access for organising a variety of services The centre would provide the following services: Be responsible for the maintenance of a palliative /end of life register care register Maintain and update the palliative care website that would host standard documentation for End of Life Tools. Organise packages of care for palliative care patients Equipment Transport (to and from hospital and hospice) Admission to community hospitals Coordination of information regarding palliative care services in the county providing a signposting function to professionals Provide service advice and signposting to palliative care patients and their carers/families, including bereavement care. Provide commissioners and providers with information relating to demand and capacity of services Service proposal 3- : Community Based Rapid Response Service - The service would provide Suffolk with a countywide Community Based Rapid Response Service. Patients at the end of life, their families or carers, can seek assistance between 17.00 hours and 07.00 hours to ensure that their urgent palliative care needs are met. The Rapid Response Service will ensure that there is seamless communication between themselves and other health and social care agencies Service proposal 4- : Commissioning and provision of palliative and End of life education and training One of the main outcomes of the education and training group was the recognition that training and education was a not an isolated challenge in Suffolk and, the group has worked in partnership with NHSS Great Yarmouth and Waveney to propose a series of recommendations to Norfolk and Suffolk County Workforce Groups to ensure more sustainable provision of high quality EoL training and education to all relevant health and social care staff. The second part of this proposal aims to facilitate the Train the Trainer model programme, and fully implement the nationally defined EoL tools across the community setting. The programme will be implemented by the two local hospices across all localities and fit in with GPC Commissioning strategies. Funding has been secured for this proposal. Service proposal 5- : Commissioning and provision of equipment for palliative and end of life care review funding stream. It is proposed to review the present specification and make recommendations to provide a clearly defined pathway identifying a separate funding stream for end of life care. The service will have a patient/client focus, where all agencies involved in assessing for and providing equipment, can ensure a same day, seamless service that reflects the 24/7 model. 4

Business benefits/qipp Overall the assumption of this report points to real potential for palliative care services to reduce expenditures associated with hospitalisation whist at the same time accommodating the expressed preferences of patients. 1 Consideration is advised that any savings predicted will be a component of both the predicated LTC (COPD/Diabetes) and Transformation Programme (Emergency admission avoidance over 65 years) QIPP delivery measurements. Therefore it is proposed KPIs are developed on local data for % of reductions in number of emergency admissions in the last 8 weeks of life. Costs have been calculated using an average of the last 8 wks of life emergency admission for 2009: 6,103 per patient, 2,823.5 per admission 10% increase in the number of people dying at home will save the costs of last admission. Table B Table A: NHS SUFFOLK Year 2009 10% increase in home deaths Number of people that died in patients will die at hospital in last 8 weeks 2835 home instead of hospital and 613 admissions avoided Savings 1,730,805 per year Table B: 2.4.2 Additional benefits that could be realised in reduction of ambulance call outs. Average cost of call out 254 Table 6 NHS SUFFOLK Year 2009 10% increase in home deaths Number of people that died in 613 emergency hospital in last 8 weeks - 2835 admissions avoided and transportation Savings 155,702 We request from members of the Executive Committee to discuss and approve the proposed service models and authorise the project to enter Phase III implementation of service models. 1 National Audit Office 2008, The potential cost savings of greater use of home-and hospice-based end of life care in England. 5

1. The Delivering Choice Programme in context with local, regional and National priorities 1.1 Implementing the End of Life Strategy The End of Life Strategy, published by the Department Of Health in July 2008, has enabled end of life care to become a national priority. The strategy describes how end of life care has previously had a low priority in health and social care services but through the implementation of the principles outlined, it will ensure improved access to high quality end of life care that meet people s needs and preferences, whilst addressing existing inequalities. The End of Life Strategy advocates a whole systems and care pathway approach. The core principles of the end of life strategy are: Identification of people approaching the end of life and initiating discussions about preferences for end of life care; Care planning: assessing needs and preferences, agreeing a care plan to reflect these and reviewing these regularly; Coordination of care; Delivery of high quality services in all locations; Management of the last days of life; Care after death; and support for carers, both during a person s illness and after their death. During Phase II of the Delivering Choice Programme in Suffolk, these principles have underpinned the development of service proposals. The National End of Life Strategy quality markers 2, will help demonstrate the effectiveness of these service proposals in achieving good outcomes for patients at the end of life and their families. Other national guidelines supporting the improvement of end of life care include: NICE Guidance Improving Supportive and Palliative Care for Adults with Cancer (2004) World Class Commissioning Information for commissioning end of life care DoH - 2009 Our health, our care, our say -2006 End of Life elements. The End of Life work stream for High quality care for all: NHS Next Stage Review 2008. The following elements of the 2009/10 operating framework:- o To deliver the End of Life Care Strategy promoting high quality care for all adults at the end of life and the local SHA visions, PCTs will want to consider delivering extended and improved service provision with their partners. o Development of community service portfolios for End of Life care. 1.2 Local strategy and local priorities In response to the NHS Next Stage review: Our NHS, Our Future and the National End of Life Strategy, the East of England Strategic Health Authority published the document Towards the Best together (TTBT) Locally the PCT is committed to the delivery of the clinical vision end of life care goals and pledges from the East of England Commissioning Framework 2010/2011. The end of life elements of the SHA TTBT aims that integrated systems are working towards: Delivery of care that enables choice Creating and extending support services for all families and carers, including bereavement support 2 Dh 2009 End of Life Care Strategy Quality Markers and measures for end of life care 6

Ensure needs assessments and advance care planning for all identified as being in their last year of life Guarantee better access to supportive and palliative care services, particularly out-of-hours Building on these national and regional priorities, NHS Suffolk included end of life care improvements within their strategic plans for improving health in Suffolk: The Statement of Strategic Intent 2008/09 2012/13, aims to deliver: 1. Improve the overall experience of healthcare services for all people in Suffolk. 2. Improve the health and sense of well being for all people in Suffolk. 3. Develop our organisation to achieve world-class commissioning on behalf of all people in Suffolk. 4. Increase joint working between NHS organisations, partners and other sectors across Suffolk. 5. Reduce inequalities in health within and between our communities. The service proposals aim to support the delivery of some of these ambitions 2. Business benefits by improving care using a whole system approach Care for palliative care patients in Suffolk is provided by many organisations including statutory, voluntary and independent providers. During the Phase I investigation barriers to better care were highlighted in a variety of areas of care delivery and the service models designed during Phase II of the project are addressing critical areas of delivery such as: Coordination, management and integration of community services; Hospital /Hospice processes; An integrated pathway of managing patient s care; Enhancing skills of professionals supporting patients Provision of information and advice to patients and their families. The proposed improvements will address barriers in various parts of the whole system concentrating in priority areas for care delivery and management. Lancaster University and the King s fund independently evaluated the whole system approach of delivery in the Lincolnshire project of the Delivering Choice Programme and they noted that services need to improve in both hospital and community for people to be able to be cared for and die in their place of choice. Facilitation of discharge is important, but when patients are discharged from hospital to community, community services need to be flexible and responsive. Services and professionals need to provide holistic care and, in addition to physical symptoms management, need to provide psychological and social support to patients and their families. The King s fund concluded that the project in Lincolnshire had significantly increased the proportion of deaths at home and decreased the proportion of deaths in hospital. It also achieved this by keeping the overall combined cost of acute and community care stable for patients with cancer receiving palliative care in the last eight weeks of life. The service proposals presented in this report have been influenced by the principles and learning from other Marie Curie Delivering Choice Programme sites. Here we present some of the business benefits in implementing the improvements. 2.1 Benefits Realisation There are challenging targets for improvement in palliative and EOL care in relation to place of care/death, implementation of the EOL tools, quality and consistency, NICE implementation and 7

patient safety. To date the PCT has put in place new contracting requirements with providers re the implementation of the EOL tools and a CQUIN for advanced care planning to incentivise this service development. The benefits realised from the MCDC programme will be: To agree and implement local plans for improvements to the quality and choice of care/place of death for people affected by life limiting illness. These improvements will support the delivery of national and regional targets for palliative and end of life care. Some of these improvements may be achieved on a cost neutral basis, or allow money to be recycled via a reduction in inappropriate emergency admissions to acute care settings. To revise the commissioning and contracting framework for palliative and EOL care to establish more robust arrangements and expectations of care providers as well as the commissioning of new/re-provisioned services. To identify and utilise opportunities for joint commissioning and collaboration with partners in the independent, statutory and voluntary sectors across health and social care locally and across the EOE SHA patch. 2.2 Baseline for benefits realisation Our baseline from the MCDC Phase 1 report indicates that there are opportunities for significant innovation and productivity through redesign, investment and more robust contracting to achieve a 10% increase in home deaths and a xx reduction in emergency admissions in the last year of life by providing better care at home/in the community setting and by improving the discharge processes. The evidence base shows that most patients given the choice and appropriate supportive care for them and their carers would prefer to die at home. 2.3. Background and Case for Change (Evidence is presented in detail in the Phase I report) Place of death and patients needing palliative care The majority of people in Suffolk die in hospital. In comparison to England there was a larger proportion of deaths at home in NHS Suffolk (21% vs. 19.1%), a smaller proportion of deaths in hospital (49% vs. 58.4%) and a higher proportion of deaths in care homes (21% vs. 15.6%). Table 1 Number of deaths per year by place of death Place of Death 2007 2008 2009 2007-2009 No. % No. % No. % No % Care home 1059 19% 1259 22% 1236 22% 3554 21% Elsewhere 107 2% 114 2% 93 2% 314 2% Home 1179 21% 1264 22% 1251 22% 3694 22% Hospice 357 6% 297 5% 327 6% 981 6% Hospital 2801 51% 2767 48% 2682 48% 8250 49% Other 22 0% 25 0% 37 1% 84 0% Grand Total 5525 100% 5726 100% 5626 100% 16877 100% Table 2 Proportion of deaths by place of death in England (2005-07) Place of death % of deaths Care home 15.6% Elsewhere 2.0% Home 19.1% Hospice 5.0% Hospital 58.4% 8

Palliative Care Need Based on the number of deaths we are able to calculate number of patients in need of palliative care if we assume that all cancer patients will be in need of palliative care and 67% of patients dying from a cause other than cancer. We need to be aware that although the formula used to calculate numbers in need for palliative care for a diagnosis other than cancer allocates 67%, the real figure is much lower mainly due to the unpredictable disease trajectory that makes recognition in some cases very difficult and the lack of expertise by some professionals to recognise palliative care in patients. Tebbit (2004) 3, suggest that the annual incidence of deaths is the single most important indicator of palliative care need in a population since most palliative care need arises during the last year of life. The number of patients with palliative care needs can be calculated using the following formula described by Higginson (2001) 4 Number needing palliative care = all cancer deaths plus 67% of all other deaths Based on this formula and mortality data from 2007 to 2009 the estimated average number of patients needing palliative care in NHS Suffolk each year was 4285 (See table 3). Table 3 Need for palliative care based on number of deaths Patients in need of palliative care Year Cancer Other Total 2007 1612 2622 4234 2008 1542 2803 4345 2009 1538 2739 4277 Although the formula used above can indicate how many people may have been in need of palliative care, it does not identify how much care or the type of care than may have been required. Utilisation of hospital resource excluding sudden deaths The hospital utilisation was examined for patients that died during the calendar years 2007, 2008 and 2009. Deaths examined excluded those for patients under the age of 19 and those attributable to external causes or sudden death (e.g. heart attack). Costs are only available for hospitals spells ending since 01/04/2008, thus the costs associated with deaths in 2008 appear significantly lower than costs associated with deaths in 2009. Data was examined to identify the number of elective and emergency admissions, occupied bed days and average length of stay. This data was broken down by activity occurring within the last year of life, the last 6 months of life and the last 8 weeks of life. For 2009 patients in their last year of life had 7170 emergency admissions, 96% of these occurred within the last 6 months of life and 85% of admissions occurred within the last 8 weeks of life. During the last year of life these patients occupied 91,358 bed days. 96% of the occupancy occurred within the last 6 months of life and 85% occurred within the last 8 weeks of life. The average LoS remains fairly static across the last year of life, 6 months of life and 8 weeks of life. The non-elective average LoS has dropped for each year in comparison to the previous year 3 Tebbit P (2004) Population based needs assessment for palliative care: A manual for cancer networks 4 Higginson, I 2001 The palliative Care for Londoners: Needs, Experience, Outcomes and Future Strategy. NHS Executive London Region. 9

although the elective average LoS dropped for 2008 but has risen slightly for 2009. Table 4: 2007 2008 2009 Elective Emergency Elective Emergency Elective Emergency Last yr of life Patients 1317 3260 1280 3375 1363 3500 Admissions 5351 6488 5342 6713 5503 7170 Bed Days 7888 90843 6837 90259 7078 91358 Avg LoS 1.47 14 1.28 13.44 1.29 12.74 Total Spend 5,114,611 20,114,845 Last 6 mths of life Patients 1223 3077 1181 3140 1248 3267 Admissions 5167 6253 5165 6440 5309 6898 Bed Days 7630 86895 6405 86070 6923 87742 Avg LoS 1.48 13.9 1.24 13.36 1.30 12.72 Total Spend 4,943,418 19,474,102 Last 8 wks of life Patients 1014 2702 971 2714 1017 2835 Admissions 4452 5593 4437 5659 4535 6128 Bed Days 6556 76353 5797 75156 6105 77829 Avg LoS 1.47 13.65 1.31 13.28 1.35 12.7 Total 4,231,103 17,302,362 Spend Patients who died on 144 2976 111 2957 113 3056 their last admission Bed Days 3230 60754 1913 53247 2438 51577 Avg LoS 22.43 20.41 17.23 18 21.57 16.88 (per patient) 10

2.4. Business benefits: Avoiding hospital admission by providing better care at home and by improving discharge process from hospital 2.4.1 The costs have been calculated using an average of the last 8 wks of life emergency admission for 2009: 6,103 per patient, 2,823.5 per admission Table 5: 2.4.3 Benefits could be realised quickly by focusing efforts in admission avoidance not only on cancer patients but patients with circulatory and respiratory disease. These two groups of patients account for approximately 43.7 % of all deaths in Suffolk. Table 5 2007 2008 2009 Cause of Death No. % No. % No. % Cancer 1609 35.2 1535 32.1 1536 32.3 Circulatory 1346 29.5 1449 30.3 1442 30.4 Respiratory 626 13.7 653 13.7 636 13.4 Nervous system 237 5.2 269 5.6 271 5.7 Other 750 16.4 874 18.3 864 18.2 11

3. How the Programme proposals work together The MCDC Phase 2 proposals are linked together by an overarching palliative and EOL care pathway Appendix 3. This provides a framework for palliative and EOL care provided by staff who are competent to co-ordinate and provide care using the nationally defined EOL care tools and effective communication skills. The Suffolk pathway follows the principles as defined in the national EOL Strategy, incorporating the need for awareness rising for the general public re palliative care issues as well as palliative and EOL care provision and co-ordination for people affected by life limiting illnesses and bereavement care. The pathway also includes the proposed new and redesigned/re-provided integrated services to ensure that local residents have access to the full range of care settings and choice in palliative and EOL care (see below) The pathways as a whole and all the proposals need to be considered together in order to realise the full benefits of the whole system redesign. Diagram 1 A phased implementation plan will be developed for phase III due to the complexity of the multiple care providers and care systems involved. 12

Diagram 1 Suffolk palliative and EOL pathway Coordination and delivery of care Integrated Service Model Patient and family carers 24 Hour rapid response service Family Carers facilitators OOHs Community Matrons. RRT. MC.ECP Specialist teams Palliative Care Coordination Centre Acute Care Community teams including GPs, D.N.s etc. Care Homes Arrange packages of care EoL Register Webb site Key worker Hospices Pathway /framework Practice Development Nurse 13

4. Proposals for approval 4.1 Service proposal 1: Care Pathway for palliative and end of life patients NB. This outline will have significant interdependencies with all the other Marie Curie Delivering Choice (MCDC) Phase II work stream outputs including the dovetail with the hospital/hospice integration of an end of life pathway and a hospital discharge planning framework. During Phase II working groups made up of local stakeholders undertook the task of examining 24 hour care by identifying models of care that would provide a high quality responsive, multi-professional service to all palliative care patients and their carers over a 24 hour period. The working group have helped develop an end of life care pathway and palliative care framework that will provide patients and carers with high quality, seamless care in their community, hospital and hospice setting. The introduction of the Care Pathway Appendix 3 and Palliative Care Framework Appendix 4 aims to reduce inequalities in the provision of care and provide all palliative care patients with the choice to be cared for in their place of choice. It also recognises the importance of supporting the patient s carer or significant other. The proposal is in keeping with the End of Life Strategy (DH 2008), which recognises the importance of a care pathway for palliative care patients and their significant others. This pathway will demonstrate a good fit with the emerging locality based approach to care delivery, endorses the implementation of the of life tools including Gold Standard Framework (GSF), Preferred Priorities for Care (PPoC), Liverpool Care Pathway, (LCP) across all settings. The pathway also includes the proposed new and redesigned/re-provided services to ensure that local residents have access to the full range of care settings and choice in palliative and EOL care. Palliative Care Framework The development and introduction of a Palliative Care Framework Appendix 4 is to support professionals in the delivery of high quality care for palliative care patients and their significant others. The use of a Palliative Care Framework allows the patient s situation to be prioritised and ensure a consistent approach from all health and social care professionals. It is envisaged that the framework could be used across all settings and will act as a prompt for the care requirements of individuals. Categorisation of a patient is not dependent on just their physical condition; it is also takes into account social situations and any recent discharges from alternate care settings. The framework should allow the categorisation of a patient to change multiple times during their disease progression whilst supporting staff to provide a flexible approach to care provision. This will be particularly important for patients with a diagnosis other than cancer. The proposed pathway The implementation of the end of life pathway will ensure that palliative care patients and their significant others receive seamless care with a coordinated multi-professional approach. The pathway provides health and social care staff with a mechanism to provide care in a flexible and responsive way whilst still maintaining high quality care throughout the 24 hour period. The pathway is inclusive of all palliative care patients irrespective of disease type or their preferred place of care The placement of the Family Carer Facilitator within the centre of the pathway further develops links between primary and secondary care. 14

The pathway has ten steps; each will have standards attached that require system wide agreement: Raising awareness Patient identification / End of life register Allocation of key worker Assessment Care plan A funding decision is made Co-ordination of care Delivering high quality care Care in last days of life After death care Step 1 Raising Awareness Link palliative and End of Life Care pathway to long term conditions/disease management pathways. Step 2 The patient is identified or/and placed on the end of life register West Suffolk Hospital Trust has developed an EoL pathway which includes identification and alerts for the patients who are likely within their last year of life. Presently discussions are being held jointly between the acute hospitals, hospices and community hospitals to commence building and working together for a common agreement around the processes. To address those patients who do reach hospital and the process within before discharge (if applicable). The patient has been diagnosed with a life limiting or life threatening condition and the professional involved in the patient s care has recognised that they could be in the last year of life. The professional has used the surprise question as suggested by the Gold Standards Framework, would you be surprised if this patient dies within the next year? If the answer is no then the professional should initiate a conversation with the patient and their carers regarding future care preferences. At this point the professional should seek consent to add the patient to the end of life register and also establish their preferred place of care. Once consent has been obtained the professional will enter the details onto the register via the system or if they are unable to access the system they contact the end of life care coordination centre to enter the patient s details. Any health or social care professional can put a patient on the end of life register. Further training will be required for staff around holding these difficult conversations and recognising when a patient is within the last year of life. Particular emphasis will be needed for patients with a diagnosis other than cancer. The End of Life register Work stream 2 within the Delivering Choice Programme agreed the need to establish a Suffolkwide end of life register to enable timely access to information about palliative and end of life patients across the whole system. The group started to explore some of the options for an electronic system to support this including the longer term strategy as well as considering the immediate need for an interim/tactical solution. At the minimum an end of life register will include the following information: Consent to share Key worker details Preferred place of care and death Resuscitation status 15

The electronic locality wide end of life register would: be available to any professional with appropriate RBAC/authorisation who has access to a N3/ health network provide real time data electronically flag that a patient has an end of life status enable data collection and reporting In the long term the strategic solution would be the enhanced/enriched Summary Care Record Fits with national strategy. It is available to any professional who has access to a N3/ health network connection. Smartcard managed access with full audit trail to ensure only applicable access made. It provides real time data electronically Managed directly from GP practice data. In the short term the interim/tactical options which now require further consideration are: Option 1 - SystmOne Fits with EoE and Suffolk Strategic direction. Smartcard managed access with full audit trail to ensure only applicable access made. It provides real time data electronically Full integration with significant elements of the rest of the Suffolk LHC. Managed directly from GP practice data for SystmOne GP practices. It can provide comprehensive data collection and reporting Table 6. Item Pros Cons Implementation Willing providers. Not all practices Pilot can commence SystmOne Training available System support Fits strategically Support for IM&T Cost Minimal cost GP practices may need incentivising Access Pilot will support process Option 2 Adastra software Currently used by out of hours GP providers It is available to any professional who has access to a N3/ health network connection, once authorisation has been given It provides real time data electronically It can provide comprehensive data collection and reporting 16

Table 7. Item Pros Cons Implementation Fits with present system Will be contractually required to move to SystmOne Approximate estimated cost 10,000 project management and training for 5 sites On going costs Annual renting 2p per head of pop. Access Web based Standard: 1) The patient has given consent to go on the register - timing of standard to be agreed example within 2 working days 2) The patient s preferred place of care is recorded The indicative costs of the system will be included in the service proposal for the end of life care coordination centre. Recommendation The recommendation for the short term solution is to commence implementation of SystmOne Step 3 A key worker is allocated to the patient The professional placing the patient on the end of life register will take on the responsibility of being the patient s interim key worker and assigning an associate key worker. At the next MDT or GSF meeting the allocation of a permanent key worker and associate should be decided. The details of the key worker should be given to the patient, recorded on patient hand held record and their significant others as well as the coordination centre. The allocation of the patient s key worker may change over the course of their illness and therefore needs reviewing at subsequent meetings. At the MDT meeting or GSF meeting the appropriateness of the patient being placed on the register will also be discussed, at this point the lead clinician for the patient may decide it is not appropriate for them to be on the register. A system key worker policy will be developed and implemented system wide. This will align with existing key worker arrangements e.g. cancer MDTs Standard: 3) A permanent key worker will be decided within an agreed period of time and the patient informed 17

Step 4 The patient has an initial assessment The key worker identifies the assessments required by the patient and organises or commences the assessment as appropriate. The key worker also prioritises the patient according to the Palliative Care Framework and the use of the Prognostic Indicator, guidance document and includes assessment of carers need. Identify Assess Plan Identify Standard: All patients who are likely to be in their last year of life Assess Standard: 1) The timeliness of assessment will be determined by the category of need. Teams should be staffed to a level sufficient to undertake face-to-face assessments, regardless of care setting, of all people at home or in hospital,, seven days a week. 2Prognostic indicator assessment criteria.3) the key worker ensures that appropriate professionals have received copies of the assessment Step 5 A care plan is written Once the assessment has been completed a care plan is drawn up for the patient and their carer. This is discussed with the patient and a copy is left in the patient s place of care. Timeliness of the production of a care plan is determined by their category on the Palliative Care Framework. Step 6 A funding decision is made A funding decision is made following completion of either an application for continuing healthcare or a financial assessment by social services. Timeliness of this application / decision will be made according to the category on the Palliative Care Framework. A decision regarding the funding stream of a patient s care should not delay the commencement of care. This may not be required for all identified patients at this stage Step 7 Coordination of care Once an assessment and care plan have been produced a referral is made to the end of life care coordination centre. If a package of care or care home placement is required then a care initiation document will be completed either over the telephone or via an electronic form that is emailed to the centre. The end of life coordinators will then source the care required and inform the key worker and the patient or significant other. The end of life coordinator will also agree a review date with the key worker. Timeliness of organising packages of care will be dependent on the patient s category on the Palliative Care Framework. 18

Standard: 1) Coordination centre communicates with referrer following receipt of care initiation document: - Red = within 2 hrs - Amber = within 6 hrs or close of day - Green = within 1 working day 2) Care organised following receipt of care initiation document: - Red = within 12 hrs - Amber = within 24-48 hrs - Green = within 72 hrs Step 8 Delivery of high quality care The delivery of high quality care will be overseen by the patient s key worker using the Palliative Care Framework as a prompt. Care provision will also be determined by the category within the framework. If a patient needs referral to a specialist team then the key worker will organise this. Step 9 Care during last days of life Once it has been recognised that the patient is within the last days of life they will be categorised as Red. They will therefore receive a daily holistic review of their needs as well as a review of the carers needs. The key worker will ensure that the out of hours services including the end of life care advice and support line are aware of the patient s condition. The patient s carer will also be given details of what to do following the patient s death. Step 10 Care after death Once a professional has been informed that the patient has died, timely verification of death is important to support the carer and significant others. Cqinn insitu Communication between professionals is also essential to prevent any unnecessary additional distress for the family. Bereavement support and follow up is to be coordinated by the patient s key worker with referrals to appropriate professionals if required / signposting to services. A follow up post bereavement will be included e.g. contact 1 month following death for signposting. Macmillan services have a new proposal to support bereavement care. Standard: 1) Patient s death verified within 4 hours of professional being informed 2) Coordination centre informed within 1 hour of verification 3) Key worker makes initial contact with significant other within 1 working day Implementation of the end of life pathway and Palliative care Framework The implementation of the end of life care pathway is dependent on a multi-professional approach building on existing relationships between health and social care professionals. It is proposed that there is a phased implementation of the pathway and framework through sites across Suffolk. It is proposed that an implementation group is formed to devise a project plan of implementation, identify sites and support the implementation of the End of Life Care Pathway and Palliative Care Framework. Initial discussions have begun between stakeholders of hospices, acute and community hospitals. IT project team involved in EoL register pilot. 19

A proposed Local Enhanced Service (LES) building on present LES QIPP initiatives has been designed for primary care. This proposal supports the full implementation of the end of life tools by all generalists across all settings, supported by specialist assessment, advice and interventions. The documentation has been standardised through working groups Implementation of the End of Life Register can commence implementation immediately, NHSS IM and T will be involved.patients will be added to the register through SystmOne and /or as they become identified. 4.2 Service Proposal 2 The Palliative Care Co-ordination Centre Introduction Care for palliative care patients in Suffolk is provided by many organisations including statutory, voluntary and independent providers. The coordination of services to ensure a seamless provision of care is an extremely challenging process. The Phase I findings from the Delivering Choice Programme in Suffolk highlighted the need to improve coordination of care across all of these professional groups including communication. In the community, it is usually the District Nursing teams that are responsible for organising care packages for palliative care patients, although sometimes specialist nurses are also involved in the process. During Phase I, district nurses stated that it is not unusual for them to spend several hours organising this care for palliative care patients. The introduction of a central coordination centre will free up district nursing time and other specialist staff to spend more time in the delivery of high quality care. In addition to this, it will provide a central point of information on palliative care patients, local palliative care services as well as having a helicopter view of available resources. During Phase II a working group made up of local stakeholders undertook the task of examining ways of overcoming some of the barriers around coordination of services and providing a seamless approach that would reduce patient and carer anxiety as well as freeing up clinical time currently being spent on administrative duties. The working group have helped develop a service model proposal that aims to develop a central point for the coordination of packages of care and care home placements for palliative care patients as well as acting as a central point of communication for professionals regarding care provision and requirements. This proposal has been developed in collaboration with the Integrated Care Transformation Programme Team Proposed Palliative Care Coordination Centre The End of Life Care Coordination Centre would act as a single point of access for organising a variety of services including packages of care; information on services; and information to managers on demand and capacity of services. The centre would also be responsible for the maintenance of a palliative /end of life register care register and palliative care website that would host standard documentation for End of Life Tools. The centre would ensure an integrated approach to avoidable admissions to hospital and would link with existing teams to source packages of care or care home 20

placements. The centre would liaise with health and social care professionals to ensure timely funding streams are established and are not delaying the provision of care. Potential providers have already expressed an interest in commencing work to develop a central register with immediate effect. In detail the centre could be developed by 3 phases and would provide the following services: Phase 1 Establish maintain and review the end of life care register including information on preferred place of care and death.the project team have linked in with the IT Department at NHS Suffolk for advice and support in devising this proposal. Maintain and update the palliative care website in conjunction with other providers Phase 2 Further expansion of the service could include organising: Organise packages of care for palliative care patients related to the following services: Marie Curie Nursing Service Nursing care from a nursing agency Care home placements A central point of communication relating to care packages for palliative care patients to health and social care professionals Phase 3 Equipment Transport (to and from hospital and hospice) Admission to community hospitals Coordination of information regarding palliative care services in the county providing a signposting function to professionals Provide service advice and signposting to palliative care patients and their carers/families Provide commissioners and providers with information relating to demand and capacity of services The key outcomes that the proposed service would provide are: Phase 1 Improved continuity of care for the patient through a coordinated approach to care provision A centrally held end of life register / database capturing who is a known palliative care patient and their preferred place of care and actual place of care A coordinated approach to better information and signposting on services to both patients/families and professionals. Including the palliative care website. Phase 2 A reduction in the time spent by clinical staff organising packages of care, allowing time to be reinvested into the delivery of care Better organisation and coordination of packages of care will benefit discharge processes and community care, that potentially will have an impact on avoiding hospital admissions and reduce length of hospital stay Improved communication relating to packages of care between organisations and the patient and their carers/families that will potentially reduce anxiety 21

Phase 3 A reduction in the number of double bookings or duplication of visits to a patient through clearer planning and information sharing A centrally held database capturing the care provision required by palliative care patients A centrally held database capturing information relating to demand for care; and unmet care Improved communication between health and social care professionals and providers of care It is proposed that the coordination centre would have a phased implementation. Phase I would concentrate on the organisation of, the central held register phase II would expand the function of the centre to incorporate the organisation of care packages and Phase 3 ordering of equipment, transport and community hospital admissions for palliative care patients The coordination centre would link closely with the continuing healthcare team in relation to funding decisions. It would also have strong links and provide a handover to the out of hour s advice line to ensure that information regarding palliative care patients on the end of life register is current and accessible. It is initially envisaged that the patient s key worker would assess the patient and then contact the coordination centre if they recognise that the patient is in the last year of life. The patient s basic details, following consent, would be entered onto the end of life register with a review date agreed between the key worker and the coordinator. Details are to be developed on the process if a package of care or care home placement is required. Proposed procedures and protocols would include: Referral criteria Referral process Allocation of care Booking care This proposal may not necessarily need to be an entirely new service; therefore could be adaptation to existing service Capacity and Demand The capacity and demand for the service will be calculated based on Higginson s work (2001) and Tebbit (2004) that estimates the number of palliative care patients in a population, the current number of Fast track Continuing Healthcare applications granted monthly by NHS Suffolk and the activity at the Lincolnshire Palliative Care Coordination Centre. Estimated number of patients requiring palliative care per year = 4285 IT systems The successful coordination of care and improved communication between professionals is dependent on robust IT systems. The coordination centre will need to use a variety of systems to allow the day to day function as well as performance monitoring. The three main IT systems affecting the coordination centre are: The End of life register The palliative care website A Scheduling system (Phase 2) 22

Palliative care website Information about palliative care and the associated services for palliative care patients in Suffolk is available via many different sources and routes; however the provision of information can sometimes be fragmented and not provided at the most appropriate time. During phase I, feedback obtained from patients and carers highlighted a lack of information being received regarding their care and what to expect as their disease progressed. Patients and carers also discussed how they did not know what help they required at this time and how to access it. A few carers described how they relied on the internet for information. The Phase I findings therefore highlighted the need for improved ways of delivering information to patients and carers. During Phase II a working group made up of local stakeholders undertook the task of examining the ways in which information is given and how it is accessed. The working group felt that patients and their carers needed a reference tool they could access for information and contact details. The group also felt that this should be built upon the present 24 hour help lines. Working groups from other work streams also highlighted the benefits of central electronic resource for professionals on service information and training courses. It is therefore proposed that a palliative care website is designed for the general public and professionals. There are 2 options to consider for implementation. 1. Development of Phase 1 this option includes the option of building on present services. Evidence supports incorporation of clinical input. 5 2. Integrating with proposed SPA Coordination Care Centre of Integrated Care Transformation Programme There was no clear preferred option as voted by the stakeholders on 15 th March 2011 however there are potential providers to commence phase 1 imminently 4.3 Service Proposal 3: Community Based Rapid Response Service It is proposed to design a service to provide Suffolk PCT with a countywide Community Based Rapid Response Service. Patients at the end of life, their families or carers, can seek assistance between 17.00 hours and 07.00 hours to ensure that their urgent palliative care needs are met. This proposal has been developed in collaboration with NHSS Integrated Care Transformation Programme. Given that Suffolk is a large rural county we expect that the community based rapid response service will be delivered from a number of locations across the county so ensuring the service can respond to patients and carers rapidly. There is an expectation that the Rapid Response Teams will be based with or close to other Out of Hours Services to ensure that there is integration, communication and two way referral between Emergency Care Practitioners and Out of Hours GPs (including advice and prescriptions) and access to equipment, e.g. syringes, syringe drivers. The Rapid Response Service provider will ensure that there is seamless communication between themselves and other health and social care agencies. The nursing team will provide seven days per week service and cover two distinct periods of time Twilight period between the hours of 17:00hrs and 22:30hrs Out Of Hours period between the hours of 22:00 hrs and 07:00 hrs The proposal for a rapid response care service for patients and carers will enable people to move to 5 Addicott,R.2009 London Journal of Primary Care 2:102-6 RCGP 23