Sue Ryder s example of good practice in end of life care in domestic settings: joint and integrated working between health and social care.

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1 Sue Ryder s example of good practice in end of life care in domestic settings: joint and integrated working between health and social care. About Sue Ryder Sue Ryder is a charitable provider of health and social care services across the UK. We provide specialist neurological and palliative care in a range of environments including community and home-based care delivery, alongside our hospices and neurological care centres. We work across communities with patients, their families, commissioners, GPs and other health and social care professionals. We are funded through charitable donations, contracts with health and care commissioners and revenue from our network of more than 400 shops across the UK. Below we have answered the questions outlining our example of good practice in delivering end of life care in domestic settings. 1. Title of service model Bedfordshire Partnership for Excellence in Palliative Support (PEPS) 2. Brief description of the example PEPS is the provision of 24hr support and coordination of palliative care across Bedfordshire. A telephone number that goes into the PEPS centre offers a single point of contact to provide a seemless service for patients, their carers and care professionals when advice and support is needed. The service was designed by Sue Ryder and NHS Bedfordshire and partnered with a further 15 other provider organisations in the county. Since its launch in December 2011 more than 1000 local people have registered to use the service, which sees qualified nurses who are experienced and skilled in palliative care screen calls to identify the most appropriate health or care professionals to respond to the callers needs. The coordination centre, which is hosted by Sue Ryder at St John s Hospice in Moggerhanger, also hosts an electronic register, the Information System for PEPS (ISP), that enables nurses to access up-to-date information about the patient s condition (following their consent). This ensures care is provided in line with the patient s preferences and choices. Prior to PEPS, palliative care services, although of good quality, were disjointed and provision was not equitable across the county. Alongside the introduction of the coordination centre, out of hours services including face to face nurse assessment and a palliative care support worker service were established countywide to enable patients to be cared for at home.

2 3. Who was the practice for? The PEPS service was introduced to improve outcomes for patients who have been identified as being in the last 12 months of life, and their family carers. The concept of a coordinated and integrated service designed and delivered in partnership is also aimed at bringing benefits for health and social care professionals. 4. Was the practice influenced by any research of practice findings? The evidence base for the service specification was based upon local and national end of life policy drivers and evidence as detailed below. These key documents informed and influenced our decisions in designing and implementing an Adult Community Specialist Palliative Care Service across Bedfordshire. NICE Guidance for Improving Supportive and Palliative Care for Adults with Cancer (2004) (Access to face to face specialist palliative care assessments hrs seven days a week). End of Life Strategy: Promoting high quality care for all adults at end of life. (DH 2008) End of Life Care Strategy Quality Markers and measures for end of life (DH 2009) Have essential services available and accessible 24/7 to all those approaching end of life that need them, these include nursing services (visiting and rapid response services) and personal care services. End of Life Care A Strategy for End of Life Care for Bedfordshire NHS Bedfordshire Marie Curie Delivering Choice Programme. Health Needs Assessment incorporated within the End of Life Care Strategy for Bedfordshire NHS Bedfordshire High quality care for all: NHS Next Stage Review Final Report. DH What did the people that use services and carers' say about the intended practice? Post carer representation had long been established on the local end of life Local Implementation Group (LIG). These members were influential in advising the commissioner to design a service that was focused on improving outcomes for the patient and carer

3 including flexibility; and responsive and timely to the needs of patients, their families and carers. A single number to call and 24/7 access was particularly important to them. The former carers participated enthusiastically in the partnership operational group meetings which were set up to agree and establish a detailed operational policy. The PEPS model had the full support of these representatives who were able to express their ideas to improve their situation at the time when they were caring for their family members. We talked to patients at Sue Ryder St John s hospice about the proposed service and particularly how they would feel about their medical information being shared. They were encouraged by providers working together to deliver a seamless service that ensured access to the right support at the right time. 6. Did other key stakeholders (e.g. staff, partner organisation) express views on the intended practice? Key stakeholders at a senior level were involved for some time in designing the service specification. At the point of implementation there was only a short time frame of 3 months to establish the service. We realised that stakeholders at a clinical level had not been as informed and engaged as we had anticipated. We recognised the importance of establishing a stakeholder operational group consisting of operational staff across the partnership. Once it was clear that this model had the patient at the centre and that the service would be complementing and supporting existing services rather than drastically changing them, these partner organisations were positive about the intended model. 7. What specific improvements and outcomes for people who use services and carers were intended? People approaching the end of life, their families and carers will feel satisfied with how they have been communicated with and informed. Development of an electronic central end of life care register (information system for PEPS) to include key information and enable sharing of information (with the patient s consent) will enable effective coordination of care. All patients held on the register will have:- Received a holistic assessment. Been offered an Advance Care Plan and, where an Advance Care Plan is already in place, patients will be offered a review (regular reviews will be performed as the patient progresses along the end of life care pathway). Received appropriate care and treatment timely to their need, day and night. Service providers will respond positively to requests from families and carers, offer assessments with regular review and support appropriate to their identified needs and preferences. There will be a reduction in:- Unplanned hospital admissions Deaths in hospital Hospital length of stays There will be an increase in deaths:- Occurring in patients usual home Occurring in patients preferred place of care

4 8. How were these outcomes identified and measured? The outcomes were agreed by the partner providers. Sue Ryder and the commissioner at NHS Bedfordshire planned a comprehensive quantitative and qualitative evaluation exercise with the involvement of Sheffield University School of Health and Related Research (ScHARR) who were briefed to advise on the methodology for identifying the cost benefits associated as a result of reduced emergency admissions and reduced length of stay. The full evaluation is due in February 2013 and will focus on the following: The effectiveness of the co-ordination centre to provide a single point of contact to access palliative support services. Equitable access to the service. The increase in proportion of deaths in usual home, reducing deaths in hospital and increasing deaths in preferred place of care. The reduction of emergency hospital admissions, readmissions and A&E attendances for palliative and end of life patients. The reduction of length of stay for patients who are admitted to hospital. Identifying the cost benefits associated with the reduction in emergency admissions, A&E attendances, readmissions, length of stay and deaths in hospital. A good patient and carer experience. An interim evaluation took place in July 2012 with a focus on demonstrating the following outcomes: Reducing the number of emergency admissions Reducing the length of stay for emergency admissions The cost saving associated with reduced admissions and length of stay The benefits to patients and families The views of stakeholders The methodology compared 2 samples of groups of patients at the end of life. The first were end of life patients prior to accessing PEPS (the control group) and the second were patients who had accessed PEPS (the intervention group). For the 2 samples, the NHS numbers of patients were matched to hospital activity datasets to identify any admissions that occurred for each patient in the 4 month period prior to death. The analysis compared the number of emergency admissions and the average length of stay for the 2 groups. To identify the benefits to patients and the views of stakeholders, qualitative information was collated in the following ways: o For patients and families case study examples were collated by the PEPS team from calls made into the service. Feedback was given on the changes to the situation following the call, the input of the PEPS service and the outcome achieved. o Views of stakeholders were collated through the use of a survey. A questionnaire was sent to GP practices and to representatives of the provider group. 9. How did you put the idea into practice? NHS Bedfordshire worked in partnership with Sue Ryder who implemented the service. A project plan and project management included meetings and engagement with all stakeholders. There was a tight timeframe of 3 months to deliver the project which presented some challenges.

5 These included a need to ensure a sufficient number of nurses with the required level of experience in palliative care could be recruited and trained to staff the coordination centre. It was vital that the technology required to deliver the service was in place, including a phone system that had the required specification and the development of the electronic register (information system for PEPS). SystmOne was chosen as the preferred platform for this but significant work was needed to configure the templates. Work to improve the information system has continued throughout the pilot. These challenges and others were overcome and PEPS was successfully implemented on 29 th December The service received 7 referrals on the first day and has now registered over 1000 patients since its launch. 10. Do you have any information about what people who use services thought about this practice? The former carer representatives involved very much supported the practice. We chose not to distribute formal questionnaires requesting feedback on the practice to patients due to sensitivities of their situation. We have gathered case studies where people expressed an interest in sharing their experience of the service, please refer to question Do you have any information about what other key stakeholders (e.g. staff, partner organisations) thought about this practice? As part of the interim evaluation a questionnaire was developed to collate the views and opinions from operational partners within PEPS and from GPs. The feedback from GPs was mainly very positive, and noted that a single point of contact reduced the confusion for patients. They reported that patients can now be confident that they only need to make one call and someone else will decide who is best placed to help them and arrange that contact. Comments included that PEPS had helped to support GPs in their roles by increasing availability and better co-ordination of care, particularly out of hours. One GP noted that they were more confident that patients will receive good out of hours support and advice which is often when crises arise. Feedback from Macmillan nurses indicated that they had a good relationship with the PEPS co-ordination team who had been receptive to discussing and addressing areas where the service needed development. Building relationships with the district nurses has required more input as initially some said they felt disempowered and at times missed out of the loop regarding patients with whom they have built good, effective relationships. A specialist nurse noted, PEPS have been invaluable not only to my patients and carers but also as a support mechanism for me. As the only person in my service caring for people with a degenerative life limiting neurological condition PEPS support me with advice and taking patient calls on my days off and annual leave. 12. Briefly describe the improvements and outcomes achieved. Was there anything that was less successful? Results from the data used in the July interim evaluation showed that: There is evidence to suggest that costs related to emergency hospital admissions are significantly lower amongst patients using PEPS, compared to patients not using PEPS.

6 PEPS is associated with a reduced number of emergency admissions in hospital, but this is not statistically significant. Statistical significance may be reached if a larger number of patients are included in the analyses. There is evidence to suggest that length of hospital stay is significantly shorter in patients using PEPS, compared to patients not using PEPS. Through the use of case study examples the PEPS service has demonstrated that since the service began: Hospital admissions have been avoided. GP visits have been avoided. Patients have felt reassured through having access to advice at the end of the phone Provided support to other professionals Admissions and discharges have been facilitated Supported end of life at home 13. Are/were any of the results unexpected? More calls to the coordination centre out of hours had been anticipated; surprisingly the majority of calls, which are from patients or family carers, are during the hours of 9am to 5pm. We think this could be due to the forward planning in the coordination of care which has now been enhanced by introducing the coordination centre. We have realised that we did not just introduce a new service but we instigated a culture change and the journey of improving patient outcomes through partnership working will continue. 14. What outcomes were noticed by people who use services and carers? We have noted over 100 compliments from people using the service. We chose not to send patients questionnaires due to the sensitivity of timing for people using the service. We have however begun to capture case studies where families are happy to share their experience. One family member describes her experience: PEPS is a lifeline; it provides a vital service during the out of hours times that the hospital consultants and local GPs are not available. Staff knowledge is also more specialised with the care of cancer patients. I have used the PEPS team several times at weekends and during the night when neither NHS Direct nor Bedoc (our out of hours GP service) was knowledgeable enough. By using PEPS, I had expert advice quickly without needing to wait to speak to our Macmillan nurse or the staff at the Primrose unit during the day. Wife of a gentleman who received support: In the time I had left with him, I was able to be his wife, not his carer. Family member of a gentleman who received support at a hospice A weight has been lifted from my shoulders, it wasn t until we got him here that we felt relieved, as we no longer had to be responsible 24/7, and could go home and have a proper sleep One GP commented:

7 Very good service and the relatives and patients that I have spoken with have found it very useful to know that they have 24h access to qualified support The PEPS service was shortlisted for the HSJ award in the Patient Centred Care category Do you think this practice is sustainable and why? The approach of coordinated care utilising the electronic end of life care register ensures integrated working and ultimately brings benefits to patients, families and health and social care professionals 16. Why and how could this practice be taken up by others? This is a model which could be adopted in any area where there is a need to improve coordination of end of life care and establish an EPaCCS. We have already had interest from other areas, hosting visits and sharing our experience in establishing the service. We think this model could also work well for other conditions, for example dementia. 17. Has there been a formal analysis of the costs and benefits of this practice? The full evaluation in February 2013 will contain this information. The interim evaluation has demonstrated cost savings in respect of emergency admissions for the control group.

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