GREATER MANCHESTER HEALTH AND SOCIAL CARE DEVOLUTION STRATEGIC PARTNERSHIP BOARD

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1 GREATER MANCHESTER HEALTH AND SOCIAL CARE DEVOLUTION STRATEGIC PARTNERSHIP BOARD 5 Date: 29 January 2016 Subject: Dementia United A 5 year improvement programme for dementia in Greater Manchester Report of: Sir David Dalton PURPOSE OF REPORT This paper updates the Board on the commitment to deliver the Devolution early win commitment and also sets out a 5 year improvement programme for dementia for Greater Manchester. RECOMMENDATIONS: The GM Strategic Partnership Board is asked to: 1. Note the progress made to implement the key worker pilot and support the 5 year GM Dementia United programme. 2. Support the identified next steps and the development of the pledges into a business case. Noting that this will be subject to an agreed Transformation Fund process. 3. Commend the report for support at the Devolution Programme Board and the GM Strategic Partnership Board. CONTACT OFFICERS: Lisa Stack 1

2 1 INTRODUCTION 1.1 This paper addresses the commitment to deliver the Devolution early win commitment and also sets out a proposal for a 5 year improvement programme for Greater Manchester. This will aim to improve the lived experience of people with dementia and their carers, whilst reducing the dependence on health and care services 1.2 Dementia is a growing, global challenge. As the population ages, it has become one of the most important health and care issues facing the world. Dementia has, and will continue to have, a huge impact on people living with the condition, their carers, families and society more generally. 1.3 People with dementia are sometimes in hospital for conditions for which, were it not for the presence of dementia, they would not need to be admitted. An estimated 25 per cent of hospital beds are occupied by people with dementia. Once in hospital they stay an average of five days longer than a similar patient without dementia. 1.4 People with dementia living in a care home are more likely to go into hospital with avoidable conditions (such as urinary infections, dehydration and pressure sores) than similar people without dementia. On discharge they are more likely to have to go into residential care than back to their own family home. 1.5 There are 670,000 carers of people with dementia living in the UK today. It is estimated that one in three people will care for a person with dementia in their lifetime. Half of them are employed and it is estimated that 66,000 people have already cut their working hours to make time for caring, while 50,000 people have left work altogether. 2 CONTEXT AND BACKGROUND 2.1 We know the number of people with dementia is growing. At the current estimated rate of prevalence, there will be 34,973 people living with dementia in Greater Manchester by 2021, 25% will have mild symptoms and will be living in the community with minimal support, 45% will have moderate dementia and will require daily support from carers and the health and social care system, 30% will have severe dementia and will be reliant upon continuous, 24 hour, support and care. 2.2 National statistics (Alzheimer s society 2014), suggest an average cost of 32,250 for each person living with dementia each year. Of this, 16.3% is spent on healthcare and 17.1% on social care. The remaining is what people with dementia and their families pay out annually for help with everyday tasks that are provided by professional care workers, such as washing, dressing and eating. 2.3 Greater Manchester currently spends 221m 1 per year on dementia across health and social care. If we diagnosed everyone on GM who we think currently has the 1 2

3 disease this would raise to 320m per year. From these data we can estimate that the predicted cost to the taxpayer for health and social care currently provided for people with dementia across Greater Manchester will be 376.7m per year by We know that dementia is under diagnosed and there variation in management. The 12 Clinical Commissioning Group s in Greater Manchester have unexplained variation in diagnosis rates ranging from 63% to 90% (of the possible cases). 2.5 The interval between referral and initial assessment varies from two weeks to six months dependent on postcode. The initial assessment protocols also vary according to geography whilst some are initially triaged by a nurse, some are directly referred to a consultant psychiatrist others to a multidisciplinary team. 2.6 Whilst the end point of diagnosis is achieved, the handoffs between specialists and waits for test results can take weeks or even months. 2.7 Similarly, the provision of healthcare to this population can be variable, for example, despite a national policy mandate to focus on reducing the use of antipsychotic drugs (known to be detrimental to this patient group), reported rates of use in GM vary from 9% to 22%. Consequently, the costs of caring for patients with dementia in care settings are escalating out of control and are set to increase in line with population prevalence. 2.8 The importance of services being integrated NHS and social care, hospital and community services, mental health and physical health services is a core construct of a safe healthcare system. Inability to access care and poorly coordinated care are drivers of poor physical health and complex dependency which can potentially be avoided. 2.9 A combination of poor patient and carer experience, escalating prevalence rates, increased health and social care costs, a ripe policy environment, an engaged public sector workforce, a powerful patient voice and a foundation of work on which to base change is a positive basis for a 5 year dementia programme for Greater Manchester. 3 THE GREATER MANCHESTER DEMENTIA VISION FOR The vision for 2021 is making GM the best place in the world to live with dementia. The dementia challenge in GM is one of standardisation, care pathway re-design and implementation. 3.2 To deliver this we need to do things in a highly reliable and standardised way: Identify patients early supporting them to live well and to manage their health; 3

4 Prevent deterioration and social isolation through regular monitoring and support to avoid unplanned admission to hospital and long-term residential care; Provide high quality healthcare in the community to prevent hospital admission; Provide high quality hospital care to prevent unnecessary increases in length of stay 4 AIM OF THE GREATER MANCHESTER DEMENTIA PROGRAMME - DEMENTIA UNITED 4.1 The aim of the programme will be two fold. Firstly to determine how we can improve the lived experience for people living with dementia and their carers, and secondly, to determine how to reduce dependence on health and care services. 4.2 Outputs from the engagement work with stakeholders over the summer and autumn of 2015 resulted in a number of pledges which will provide a framework for the Dementia United programme. 5 PLEDGE 1 - TO IMPROVE THE LIVED EXPERIENCE OF PEOPLE WITH DEMENTIA AND THEIR CARERS. 5.1 Develop a measure for Greater Manchester of the lived experience which can be tracked over the 5 year period and used to inform the effectiveness of changes. 5.2 The Alzheimer s society is beginning to test this idea with the dementia action alliance members, the aim to have an initial feasibility report in February PLEDGE 2 - TO REDUCE VARIATION 6.1 Develop a single evidence-based commissioning framework for dementia services across Greater Manchester and monitor performance using agreed measures. 6.2 A coalition of locality leads is being established which will begin sharing current practice. 6.3 A first iteration of a dashboard of GM system level measures has been developed to inform improvement discussions and redesign. Measures have been selected which are in line with NHS England s Well Pathway for Dementia (preventing well, diagnosing well, living well, supporting well and dying well). 6.4 Medium term plans will see the development of a single GM commissioning framework for key performance milestones. 7 PLEDGE 3 - TO INTRODUCE A KEY WORKER FOR PEOPLE WITH DEMENTIA 4

5 7.1 Every person living with dementia will have access to a key worker 24 hours per day, 7 days per week who will support them to live well with dementia Every person living with dementia will co-produce a package of support and care which meets their needs and wants which is reviewed and updated at least once per year 7.2 Work is underway to develop the service specification for a key worker model to support three segments of the population with a mild, moderate and severe dementia diagnosis. 7.3 Three localities, Salford, Wigan and Bury will pilot and test the key worker concept commencing April To complement this, a social finance proposal is being developed for a funding model. 8 PLEDGE 4 - TO CO-PRODUCE AND RE-DESIGN 8.1 Provider services to re-design health and care systems with patients and their carers to ensure services meet their needs. 8.2 The ignition phase of this work will begin with a review of provider services in each locality which will highlight the service provision in each area. This will be shared across GM. 8.4 Localities have been asked to commitment to a series of pledges through the Locality Plans for GM Devolution & Dementia. These include; appointing sponsors, creating a local brand, creating an improvement plan, determining local goals, develop a concordat and articulating a system for monitoring. 8.5 Alongside this work locality leads will be supported with training to deliver collaborative improvement and to run improvement collaboratives in their area (beginning in Q ). These collaboratives will focus on improving the lived experience and delivering against the standards set in the commissioning framework. A supplementary information improvement programme will examine the core information required and test solutions which could deliver information seamlessly across health and social care. 8.6 John s Campaign has agreed to collaborate with and support Dementia United through involving carers and families of those with dementia in the codesign of health and social care services. 8.7 A grant application has been submitted to the Health Foundation s Scaling up Improvement fund by Salford Royal NHS Foundation Trust. The proposed project seeks to work across the GM region to improve the experience of people with dementia, and their carers, whilst staying on hospital wards through the use of specialling the provision of 1:1 care by hospital staff for people at risk of falling and other harms commonly experienced whilst in hospital. 5

6 9 PLEDGE 5 - TECHNOLOGY ADOPTION 9.1 Every person living with dementia will have access to technology that will help them to monitor their health, enrich their social lives and navigate local services in a way that is helpful to them. Every person living with dementia will work with their key worker to develop a technology profile which will be an integral part of their care plan and updated at least once a year 9.2 This pledge will focus on improvements which directly impact on the lived experience for people with dementia using technology, and linking to the key worker concept. Central to this is the theme of connectedness which will examine how digitally enabled media (smartphones, TV, portable devices) can be used to monitor health, enrich social interaction and provide access to health and care services. Three key areas to this theme have been identified by the GM dementia stakeholder group: 9.3 Monitor my health A more systematic application of self-monitoring and remote monitoring using sensors, wearable devices, smart phone applications, home computers and TV with the explicit aim of promoting health, preventing deterioration and harm. 9.4 Enrich my world A more systematic exploration of how memories can be stored, archived and accessed and optimisation of communication with friends and family are both key to reducing the isolation and loneliness felt by people living with dementia and their carers. 9.5 Connect me to my support system Navigating the complex maize of support and care systems can be overwhelming, this work stream will examine how navigation systems (personal and digital) can enhance the lived experience and reduce frustration for people living with dementia and their carers. 10 PROGRAMME GOVERNANCE 10.1 The governance for the programme has seen the establishment of a strategic leadership group to provide oversight of the programme, co-chaired by Sir David Dalton (CEO Salford Royal NHS Foundation Trust) and Pat Jones- Greenhalgh (Director of Adult Services, Bury Council). This is supported by a monthly operational group and a wider stakeholder group which includes public, private, third sector organisations/groups and patients and carers The proposed governance will feed into the developing GM arrangements, and the programme will report as required to the Strategic Partnership Board and the GM Commissioning Board. 6

7 11 NEXT STEPS 11.1 The next steps have been identified as follows: 1. To develop the pledges in a business case to support a new care model for dementia. 2. Engage the GM system in: a. The redesign of the dementia pathway; b. Developing a single commissioning framework; c. The adoption a dashboard of GM system level measures for dementia. 3. Implement the pilot of the key worker in 3 locality areas, Salford, Bury and Wigan. 12 RECOMMENDATIONS 12.1 The GM Strategic Partnership Board is asked to: 1. Note the progress made to implement the key worker pilot and support the 5 year GM Dementia United programme. 2. Support the identified next steps and the development of the pledges into a business case. Noting that this will be subject to an agreed Transformation Fund process. 3. Commend the report for support at the Devolution Programme Board and the GM Strategic Partnership Board. 7

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