Our Health, Our Care, Our Future Appendix 17. Transforming our services - Patient Pathway developments in Lothian

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Transforming our services - Patient Pathway developments in Lothian The NHS Lothian strategic plan is predicated on the need for redesign to deliver improvements in health and care services in Lothian. The central tenet of service redesign is to focus on the patients journey and experience, to help identify where service improvements are necessary and to involve a wide range of service users and providers in analysing and redesigning improved patient pathways. We have identified four people who typify patients who use our services a lot and whose care represents key challenges for NHS Lothian and partners in the next ten years. We have called these patients: Sophie a young child; Callum, a young man who frequently uses our unscheduled care services because of his alcohol and mental health problems; Hannah, an older woman who has a number of long term conditions; and Scott, an older, frail man. We will use these patients to illustrate key patient pathways. Through mapping their care needs, we can agree how they can be met more effectively and efficiently. A designed and managed process of patient and provider engagement is underway during 2014 and is expected to inform significant service redesign in the future. Redesigning care for Sophie, Callum, Hannah and Scott For a long time, and in common with much of the rest of the UK, we have planned care separately in different parts of our system (primary and community care, acute care, mental health). We have also planned around buildings, around individual services or even clinicians. What is proposed here is a shift toward an overarching approach which focuses on the needs of people who use all the different health and social care services across NHS Lothian. Who are Sophie, Callum, Hannah and Scott? The approach we will use is summarised in the diagram below. It assumes that all urgent service redesign work that is ongoing or needed imminently across NHS Lothian will continue. This will ensure that we meet the pressing challenges that we face. Alongside that, a number of work streams will be initiated which focus on redesigning care across whole pathways. To maintain an absolute focus on people s needs, we have named patients to embody some of our key care pathways. The care pathways of Sophie, Callum, Hannah and Scott reflect the majority of the care that is delivered across NHS Lothian. An expert group of more than 20 senior clinicians from across NHS Lothian were introduced to this approach in December 2013 and confirmed that Sophie, Callum, Hannah and Scott are representative of a great many of the patients that they care for. 1

Urgent local service planning and redesign continues across acute and primary care 1. Use our intelligence and evidence to agree about five fictional patients with varying degrees of care needs who illustrate key patient pathways. 2. Map the care needs of these patients and how we currently meet them. Include both planned and unplanned care. Agree principles we are working to. 3. Get everyone together (patients, clinicians) to agree how we can meet these needs in a radically different way, taking into account agreed principles. 4. Use our data to plan how we deliver these pathways as services. Callum 38, depression, alcohol, drugs (younger, frequent use of emergency/urgent care) Callum s care pathway now Callum s new care pathway Hannah 60, diabetes, BP, COPD (LTCs, multiple morbidity) Scott 75, confusion, BP, arthritis, diabetes Hannah s care pathway now Scott s care pathway now PRINCIPLES e.g. workforce 6 dimensions of quality integration of H&SC etc Hannah s new care pathway Scott s new care pathway Workforce Finance Facilities IT etc (frail, elderly) Sophie 3, epilepsy Sophie s care pathway now Sophie s new care pathway March 2014 April 2015 What care do Sophie, Callum, Hannah and Scott get now? The next step in this process will be to map the care that Sophie, Callum, Hannah and Scott receive. We will do this using data, the experience of people like Sophie, Callum, Hannah and Scott who use our services and the experience of staff who care for people like them. How could we give Sophie, Callum, Hannah and Scott better care? Having identified what currently happens for Sophie, Callum, Hannah and Scott, we will work with both patients and staff to come up with a better way of doing things. When we do this, we will keep in mind the planning principles NHS Lothian has agreed and will focus on what would be the best way of providing services for and supporting Sophie, Callum, Hannah and Scott rather than thinking about the services that we have in place for them at the moment. Only when we have agreed the optimal care arrangements for Sophie, Callum, Hannah and Scott will we then move to consider how to deliver this in terms of buildings, services, staff, IT and all the other infrastructure needed. Why use this approach? A number of health systems elsewhere have used the focus on individual patients to redesign services. These include the Esther Network that has been used to redesign care in Jonkoping in Sweden and Mrs Smith who featured, and continues to feature, centrally in the integration of health and social care in Torbay. In the published evaluation of the Torbay work it was found that: 2

The power of Mrs Smith s story was obvious, in the connection that everyone had with her. Many service users, carers and staff knew a Mrs Smith, and they all recognised the problems she faced. Soon there was no presentation on the care trust which did not contain Mrs Smith, and she has become the symbol of the new organisation. 1 This development of a shared narrative has been identified by the King s Fund as one of the high impact interventions needed to make integrated care happen at scale and pace. 2 Who are our Mrs Smiths and Esthers? This is explained in more detail in the section that follows. One of the key things we have considered in choosing this approach and these patients is the need to focus on the whole population. The evidence shows that to achieve significant shifts in how we deliver our care, we need to focus on the large number of patients who use our services infrequently and not only on a relatively small number of patients who use our services a lot. This is shown in diagram below using the example of emergency admissions to hospital. 3 1 Lavender A (2006). Creation of a care trust: managing the project. Journal of Integrated Care, 14, 5, pp 14 22. 2 Making integrated care happen at scale and pace, The King s Fund, March 2013 3 Reducing emergency admissions: are we on the right track? BMJ 2012;345:e6017 doi: 10.1136/bmj.e6017 3

Patient Groups We have identified four patients to represent four groups of patients. These four groups have been chosen because their current use of health services suggests that those services could be provided in a better way. The four groups are represented by Sophie, Callum, Hannah and Scott. Their current pattern of use of health services has been summarised in a risk prediction tool called SPARRA (Scottish Patients at Risk of Readmission and Admission). The tool predicts the risk of emergency admission in the following year for each patient in Scotland. It looks at previous use of health services by analysing activity such as number of drugs prescribed by GPs, Emergency Department attendances, hospital admissions and out-patient appointments. Patients then receive a risk score of between 1% and 100% depending on their previous use: approximately 70% of people in Lothian have a SPARRA risk score above 0%. During development of the risk prediction tool, four risk groups of patients emerged, defined by four different patterns of service use. These four risk groups have informed our four patient groups. Sophie Sophie represents a child patient aged under 16. The group she represents may have one or more long term conditions such as asthma or epilepsy. Approximately 103,000 or 11% of people in Lothian are in this patient group. Patients in this group are likely to make use of primary care and specialist community care services, attend the Emergency Department, be admitted as an emergency and receive a range of local authority and voluntary sector services. Callum Callum represents an adult patient aged between 16 to 55. The group he represents is likely to have mental health problems such as anxiety or depression, a history of alcohol and drug misuse and typically presents frequently to Emergency Department. Approximately 41,000 or 5% of people in Lothian are in this patient group. They account for 11% of the adult patients who experience at least one emergency admission each year. As well as being frequent Emergency Department attenders, patients in this group are likely to make use of primary care, community mental health services, specialist drug and alcohol services and a range of local authority and voluntary sector services. Patients represented by Callum are also more likely to be involved with the criminal justice system. Hannah Hannah represents an adult patient aged between 16 and 74. The group she represents is likely to have one or more long term conditions such as diabetes, COPD and heart failure. 4

Approximately 440,000 or 49% of people in Lothian are in this patient group and they account for 56% of the adult patients who experience at least one emergency admission each year. Depending on the number and type of long term conditions each patient has, and how long they have had the conditions, these patients are likely to make use of primary care and specialist community care services, attend the Emergency Department, be admitted as an emergency and receive a range of local authority and voluntary sector services. Scott Scott represents an adult patient aged over 74. The group he represents is likely to be frail and may have a range of long term conditions or may not have any specific diagnosis. Approximately 59,000 or 7% of people in Lothian are in this patient group and they account for 33% of the adult patients who experience at least one emergency admission each year. Patients in this group are likely to make use of primary care and specialist community care services, attend the Emergency Department, be admitted as an emergency and receive a range of local authority and voluntary sector services. Variation within each patient group Within each patient group, there is a wide range of health and social care needs dependent on socio-economic circumstances, age, underlying condition(s) and time since diagnosis. Some patients may be appropriately cared for entirely within primary care whilst others may potentially benefit from a greater range of services within the NHS and from partner agencies. Therefore, as our work progresses, we shall identify a number of Sophies, Callums, Hannahs and Scotts to improve our understanding of how and why these patients could benefit most from service redesign. What we ve done so far - Hannah s pathway We have started the process by looking at Hannah s pathway. Hannah is important because she represents patients who are experiencing multiple morbidities. Recent research in Scotland has highlighted that a care system designed around single diseases is not what patients need. 4 We have established a core group to take the work forward that includes a clinical lead, public health lead, analytical and research support, the modernisation team, patient involvement and social care. This core group has met weekly since early February 2014 and identified four strands of work: 4 Barnett, K., et al., Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. The Lancet, 2012. 380(9836): p. 37-43. 5

Agreeing a profile for Hannah which reflects all aspects of her life: health, work, home life, caring and family. Analysis of data to understand how representative Hannah is of all the patients with multimorbidity in Lothian. We are doing this by: - Using SPARRA data to look at overall numbers of patients with multimorbidity across Lothian and by geographic area, the distribution of SPARRA risk score (risk of emergency admission within the next year) across those patients, and the factors behind that risk score (e.g. prescribing, out-patient attendances, emergency admissions) - Linking SPARRA score and risk cohort information into the Integrated Resource Framework database at patient level. This will allow us to understand patients like Hannah s health and social care patterns over time. - Applying the Scottish data on multimorbidity (published in the Lancet in 2012) to Lothian s population to understand how patterns of multimorbidity differ between geographic areas and levels of deprivation. - Reviewing the published literature on multimorbidity and the Lothian reports that summarise what patients have already told us relevant to patients like Hannah We are also undertaking an engagement process which includes: - one-to-one meetings between members of the core group and key stakeholders responsible for providing care to Hannah - a large engagement event planned for June 2014 which will include patients, health, social care and third sector representatives - the engagement process will be semi-structured in that it will use Hannah s profile (to help people to identify with the issues that she is facing in all aspects of her life) and a map of care that Hannah might use or be offered. What we re planning to do with the output of these strands of work The key output is the information we will get from the engagement process. This will include qualitative and quantitative information about what doesn t currently work very well for Hannah, both from her perspective and the perspective of service providers. We anticipate also getting information about what does work for Hannah. For example, innovative services or ways of working that have improved Hannah s quality of life or changed the way she uses services. The most important thing is that we make best use of this information and use it to inform service redesign. One way of doing this is to use the house of care model. 5 The house of care is both a metaphor to illustrate the whole system approach required, and a 5 Coulter A, Roberts S, Dixon A. Delivering better services for people with long-term conditions. Building the house of care. Kings Fund October 2013. 6

checklist for what components need to be in place for holistic person centered care to work. Although it was devised around primary care, the model is applicable to all health and social care services. House of care model We will pilot the house of care approach in the following way: to map the issues identified during our Hannah engagement process and literature review onto the house of care framework to help us identify where the gaps are and which components need strengthening. This information will be used in conjunction with the data analysis to inform overall service redesign for NHS Lothian. to support the development of two pilots of the house of care approach based around groups of primary care practices in Edinburgh and East Lothian. to encourage service providers to consider areas of shared responsibility and how to embed this in future service provison The output from Hannah s pathway will be used to inform the strategic needs assessments and therefore strategic commissioning plans of each health and social care partnership. What we need to make it work Any degree of system change needs the support from the Board and the Executive Management team along with all staff within the organisation. We will need the involvement of clinicians, nurses, health and social care staff and patients to redesign our pathways to make them work better for Sophie Callum, Hannah and Scott. During a period of significant resource constraints it is often difficult to do something differently if the potential benefits are difficult to perceive in the short term. However, there is a small window of opportunity at this early stage of structural change surrounding the integration of health and social care that will enable this to happen. 11 March 2014 7