‘Carers at the heart of 2lst Century families and communities - The National Carers Strategy

1. ‘Carers at the heart of 2lst Century families and communities - The National Carers Strategy Philippa Russell, Chair Standing Commission on Carers E-mail: scoc@dh.gsi.gov.uk

2. Background to the National Carers Strategy • Changing families, changing communities. • New focus on outcomes and life chances rather than crisis management. • Improved life expectancy = Implications for older and younger people needing long-term support. • Strong equalities agenda • Increasing unmet demands – but limited resources.

3. Change for carers matters! • Every day another 6,000 people become ‘new carers’! • The number of people over 85 will double in next 20 years. • 70% of carers providing high levels of care say they have poor health. • Carers save economy an estimated £87billion pa but caring frequently associated with loss of income and financial hardship. 65% of carers of working age have to give up work.

4. ‘Carers at the heart of 2lst Century families and communities’ • A new National Strategy • ‘Caring with Confidence’ – an expert carers’ programme • ‘Carers Direct’ - A National Help Line and on-line advice service • New money for breaks from care, improving the health of carers, young carers etc. • A Standing Commission on Carers

5. The National Carers’ Strategy: a new vision for carers • ‘Our vision is that by 2018, carers will be universally recognised and valued as being fundamental to strong families and stable communities.’ • ‘We need services which respect the wishes and feelings of families and those they support. We are talking about inter-dependence and positive outcomes rather than crisis care.’ [National Carers Strategy]

6. Key principles in the National Strategy: By 2018 - • Carers will be respected as expert carepartners, and treated with dignity and respect. • Carers will not be financially disadvantaged because of their caring roles. • Carers will be enabled to have a life of theirown outside their caring roles.

7. A new vision….cont • Carers will be supported to stay mentally and physically well and be treated with dignity. • Young carers will not be required to undertake inappropriate levels of care and will be supported in order to achieve the five ECM outcomes.

8. Resources and the Strategy • The Strategy is underpinned by £255m to implement some immediate steps alongside medium and longer-term plans. • Carers Allowance not addressed specifically but Government promised that it will be reviewed as part of wider DWP review of all allowances and benefits.

9. What the Strategy promises • £150m to improve breaks for carers. Money will be routed through PCTs. • Pilots coming soon to help to develop new models of breaks/respite care to meet needs and wishes of carers and those they support.

10. What the Strategy promises cont… • Pilots to look at how the NHS can better support carers through: • Training for GPs • Annual health checks for carers • Better joining up of health and social care services

11. More support for employment of carers • Up to £38m to enable carers to better combine paid employment with family care • New money will go through Job Centre Plus with introduction of new Care Partnership Managers to provide better information, advice and support.

12. Supporting the Strategy • Over £6m to improve support for young carers • Workforce development and skills for care. • Investment in training carers to be effective partners in care; more support for third sector and better information and advice.

13. Meeting the challenge: ‘Personalisation and Co-Production’: Big ambitions for social care in the 2lst century • ‘Putting People First’ seeks to be the first public service reform programme which is co-produced, co-developed and co-evaluated and which recognises that real change will only be achieved through the participation of users and carers at every level.’ • [Putting People First: A Shared Vision and Commitment to the Transformation of Adult Social Care]

14. Transforming social care – a new focus on outcomes and life chances…. Seven outcomes for adult social care services– but are we achieving them?[Our health, Our Care, Our Say, 2006, Putting People First, 2007] • Living independently • Staying healthy • Maximum choice and control • Freedom from discrimination • Economic well-being • Personal dignity • Participating as active and equal citizens

15. Developing the National Strategy for carers? What carers told us they need….. • Respect for, and recognition of, carers’ own expertise and the need for practical and emotional support – ‘If we could help design and build the services to support us, life would be so much better.’ • Information, advice and advocacy’. ‘Nobody expects to become a carer, it’s not a career choice, you need help right from the start!’

16. What do carers want? Doing things differently • High quality care(and a trained and competent workforce to deliver it). ‘Why can’t we be the trainers – that way we can improve access to mainstream community services?’ • Personalisation and individual budgets – ‘Individualised services matter – but where are the new ‘outreach’ personal assistants to come from? How will we balance choice, independence and control with safeguarding vulnerable people?’

17. What do carers want? Doing things differently…. • Planned regular breaksfrom caring. ‘But it’s not all about beds! If we had community transport, we could use the local leisure facilities, have a social life.’ • Getting a life outside caring: ‘Family carers have rights too but too often we act as the unpaid broker, emergency carer and of course the chauffeur! We want to care but we want our contribution to be recognised and supported.’

18. What do carers want? • Assessment – fair, proactive and positive (‘It’s so humiliating - you shouldn’t need to break down before you get support’). • The Equalities agenda - Equal rights! Balancing the needs of the carer and the person being supported (‘I had to give up work because the so-called domiciliary care was unreliable and poor quality. I think carers are sometimes treated like shadows not as people in their own right! We’re expert partners really – but we need recognition) .

19. New opportunities: A new ‘Social Care Concordat’ through: • A shared visionand commitment across Government to the transformation of adult social care.‘ • Focus on partnershipbetween agencies. ‘We still need professionals – ‘self help’ doesn’t mean doing it all on our own. But we want services to suit us, not the other way round!

20. Some challenges…. • The Independent Living Strategy – recognising importance of respecting the wishes and feelings of both carers and those they are supporting. • Joining up health and social care! Introduction of Personal Health Budgets offers new opportunity. • Engaging with a very diverse society: developing culturally acceptable services and avoiding misconceptions about wish for, and use of, carer support services.

21. More challenges…. • Fair access to care? CSCI (2008) has published a review of fair access to care (Cutting the Cake More Fairly) – Government will be reviewing current resource allocation systems (RAS) in light of their recommendations. Concerns that we need a clearer and fairer system without so many regional variations. • Care, Support and Independence: consultation on a new system of funding and delivering social care (Green Paper in 2009).

22. But also opportunities….. • Personalisation of services – ‘Putting People First’ offers a new commitment in order to offer ‘joined up’ services and individualised support. • ‘Caring with Confidence’ - Expert Carer Programme (and a new website, Carers Direct) to improve information and advice). • ‘The Case for Change’ – consultation on the shape and funding of adult social care. • The Darzi Review and NHS reform

23. The ‘big debate’ – Individual budgets and direct payments! • National policy shift to personal/individual budgets and direct payments. • Personal health budgets coming next! • Early evaluation suggests that carers are very satisfied once the individual budget is in place – provided they have been fully involved in assessment and planning.

24. Individual budgets – the challenges • A communication strategy needed to reassure users about range and quality of options available. • Interest in development of brokerage and advocacy arrangements to improve assessment and decision making. • Market development – local authorities need to work with providers to stimulate new provision and to maximise choice.

25. More about individual budgets • Nine regional consultative events on National Strategy – shift to individual budgets major cause of concern (usually amongst carers who did not have an IB!) • IBSEN evaluation of impact of IBs on carers found general satisfaction IF carer fully involved in planning. Initial insecurities generally addressed and support seen as more creative, flexible and meeting real needs.

26. But…… • Information, advice and advocacy vital for many families in order to make informed choice. • Carers’ own needs, capacity and costs of caring not always addressed. Carers concerned that their availability could lower level of budget. Questions about whether carers should be paid (reimbursed) for care.

27. And assessment • Carers’ Assessments: not always carried out or taken into account in assessing needs of person needing support. • Developing the market: a role for brokerage and for local authority partnerships with voluntary/independent sectors to provide a different and better range of services.

28. But encouraging messages…. • Carers very satisfied if they felt ‘expert partners in care’. • Carers reported positively on improved quality of life. • But more work needed on a broader ‘family focus’ in assessment and planning. Some authorities adopting family conference model where there are differences of opinion and balancing of interests.

29. Personalisation – the workforce challenge • Skills for Care – workforce crucial to roll-out of personalisation agenda. But challenges in recruitment, training, support and deployment of new ‘army’ of personal assistants. • Safeguarding and risk management – striking a balance between choice, control and independence and the safeguarding of vulnerable people.

30. Partnership working key to successful delivery of Strategy • NHS Operating Framework mentions carers for first time! • Personal Health Budgets – pilots starting later in 2009. Health and social care vital for the well-being of many carers and those they support. • World Class Commissioning Framework: Scope for joint commissioning, with specific references to carers within first NHS Constitution.

31. Moving forward …We need further discussion on: • Real engagement of carersand thosethey support as ‘partners in policy-making’. • The development of an evidence base on both barriers and positive practice (ie ‘what works’). • Support for the third sector in offering gateways to ‘different ways of doing things, supporting the shift from recipient to designer and commissioner of services!

32. Moving forward – a role for the Standing Commission on Carers • Solidarity – Forming new alliances and strengthening the voice of carers in the Strategy’s delivery. • Scrutiny – Moving beyond the rhetoric. Is the vision being translated into reality? • 2018! A ten year strategy with time to invest in long-term sustainable change.

33. Putting Carers at the heart of 21st Century Families and Communities: Key themes identified in the Strategy. • Ensuring the provision of high quality and cost-effective breaks. • Carers and the personalisation agenda. • Improving the health and well-being of carers. • Helping carers remain in or enter/re-enter the job market. • Ensuring that young carers do not undertake inappropriate caring roles.

34. Immediate opportunities – Invitation to bid for funding for demonstrator sites! • The demonstration sites will: • Measure quality and effectiveness of a range of new approaches to offering breaks for carers (8-12 sites). • Deliver annual health and/or health and well-being checks for carers (6 sites). • Explore ways in which the NHS can better support carers (6 sites).

35. The Demonstrator sites • Bids can be up to a ceiling of £400,000 full year costs. • They must demonstrate positive partnerships between PCT, LA and third sector. • They should be innovative and demonstrably engage carers in the process and improve outcomes. • Bids can focus on specific groups of carers (eg older people, people with mental health problems, young carers).

36. To find out more…. • The Prospectus is available on: http://www.dh.gov.uk/publications • Enquiries or requests for further information should go to: jo.hughes@dh.gsi.gov.uk

37. In conclusion…moving beyond social care to whole system change ‘’Whilst some reforms [around social care] can be made within the parameters of the local adult social care policies, others will require new partnerships and commitments across a wide range of public services as well as with local communities…in future organisations will be expected to put citizens themselves at the heart of a reformed system. In effect change and improvement are all our responsibilities.’ [Putting People First, 2007]