THINK LOCAL, ACT PERSONAL MAKING IT REAL IN COLD CLIMATE.

PHILIPPA RUSSELL, CHAIR, STANDING COMMISSION ON CARERS, E-MAIL: PRUSSELL@NCB.ORG.UK

Philippa Russell Chair, Standing Commission on Carers,

E-mail: prussell@ncb.org.uk

Think Local Act Personal..

A new sector-wide Concordat for users, carers, councils, commissioners and providers.
Making progress towards Personalised, community based support. Transformation in a cold climate! Hard but also an opportunity.

Caring for our future - The six questions

Quality: How can we improve the quality of care and support a changing workforce? Personalisation: System change to self directed support!

Shaping local care services: How can we ensure a wider range of innovative and responsive care and support services that respond to individual need and focus on outcomes not crisis management?
Prevention: How can we support more effective prevention and early intervention to maximise and sustain maximum independence and good health for users and carers?

Caring for our future cont..

Integration: Good outcomes for social care and support will in many cases require changing practices within NHS. How can we better join up social care, health, housing, education and training etc and join up Personal Health and Social Care Budgets? The role of financial services: Innovation requires investment! What is the role of financial services in shaping changing services? A reflection on the six questions what will be the role of the new micro commissioners and providers, the users and families themselves? Are families and users themselves also among the new venture capitalists in doing things differently, eg personal finances, pooled budgets?

2lst Century carers, a reminder on who cares

Around 6 million carers, 4.3million of working age. 54% of carers give up work to care carers emphasise that best support would be quality care for their relative. Improvements in medical care mean new survivors with very complex disabilities but implications of shift from NHS in-patient to domiciliary care.

1.25 million carers now provide care for more than 50 hours a week. Value of carers contribution estimated at 118b (cost of NHS is 98b pa). 70% of long-term carers report that caring has a negative impact on their own physical and mental health.
New sandwich generation of multiple or mutual carers (60% of childcare now provided by grandparents, some families caring for three generations).

Personalisation Treating people equally

does not mean treating them the same!

The rise of the Personal Budget!

National Personal Budget Survey (2011) showed majority of 2,000 respondents reporting better outcomes.

Key factors in satisfaction included:

A navigator for the system: Good information and advice in planning personal care (for carers and those they support). Real options, a focus on outcomes about how Personal Budget is managed. A market place with something to sell: carers supported to find right mix of care and support. Think family: Care and support may affect multiple family members (eg distance caring; intergenerational caring; young carers etc).

Personalisation Some challenges as well as opportunities

Challenges:

Anxiety about options for organisation and money management. Developing a market place for wider range of services. Concerns about possible loss of existing services without adequate replacement. Challenge of interface with health and other services.

Opportunities:

Flexibility (eg Shared Lives). Innovation (eg use of assistive technology) User friendly (eg support for user to use mainstream services rather than social care provision). Self Directed Support (eg carers feel in control and can tailor care and support to meet their desired outcomes).

Personalisation means acknowledging cultural, social and agerelated preferences in lifestyle and support. Particular anxiety about ageism and negative stereotypes around older people.

What is care and support for?

Getting a life (eg support to work, enjoy family and community life, gain greater independence) Recovery/reablement (eg after a stroke,accident) Maintenance (eg older people wishing to remain in home and community) Managing change and transitions (eg into own home) Crisis management (eg abuse, loss of family carers) Whole family support (when multiple family issues or needs)

Think Family!

People with higher support needs can be heavily reliant on families and carers who often have the power and influence to kill or drive an entrepeneurial idea
[Community Catalysts, 2011]

Families

are the new micro commissioners and the new micro providers. But they need high quality information, advice and support to do things differently. Its easy to forget the emotional side of caring, the what ifs. Id like to see us use the New Zealand system of Whanau, whole family discussions and engagement in the future.
[Family Carer, 2011, at meeting on personal budgets]

Thinking positively valuing families, valuing diversity

Personalisation means re-focusing on

users and carers, their lives at home and in the community and being ambitious.

No assumptions about role or aspiration

of user or carer: building employment options

and other family responsibilities into assessment and resource allocation systems.

Personal Budgets a balance of interests? Managing both carers and users aspirations and preferences.

Co-production - the cornerstone of personalisation.

Seeing users and carers as expert partners. Recognising the emotional as well as practical challenges of doing things differently. Attitude change

Creativity and innovation and use of new technology (eg telecare)

2lst Century care and support new options around employment

I became a carer overnight when my husband had a stroke. He did make quite a good recovery. But the discharge from hospital was a nightmare. I had to give up work after six months and we could have lost the house. We were so lucky, with a sympathetic GP, a good CIL and a wonderful PA for my husband, we got our lives back. The Personal Budget made us citizens again! Personal budgets? I didnt want a day service, I wanted a life. My

PA has made it happen.

Work matters! [Professor John Glasby, 2010,

The Case for Social Care Reform]

[We need] an approach which seeks to gain broader social and economic benefits from investment in social care. Are resources currently over-focussed on crisis prevention in acute health and social services with insufficient investment in prevention and wider community services?

The evidence [on outcomes from investment in social care] suggests that many carers are disadvantaged and prevented from contributing more fully to the economy and society through spending so much time caring and with lack of support. Greater support for carers could lead to additional earnings of 750 million for working carers, hence social care should be seen as a form of social and economic investment rather than crisis management for both individuals and society as a whole.

Carers Strategy Refresh - measures proposed to help carers balance caring with paid work.

Extending right to request flexible working. Designing in flexible working arrangements in job design and recruitment. Developing an all-age career service. Continue investment in support for carers returning to work through Jobcentre Plus. Promoting growth of assistive technology in supporting carer employment and user safety and well-being. Ensuring carers have informed and responsive line managers.

Employment opportunities for people of working age in new systems of care and support!

Some key messages from the Sayce Review (2011) on new directions in employment to support disabled people into work can we apply same messages to carers?

Rapid information, support and adjustments to aid job retention and/or advice on social enterprise options.
Flexible and ongoing support for employees and employers where needed to get in, stay in and get on.

Working with employers, recognising that small and mediumsized employers less likely to have resources to do things differently.
Working with Jobcentre Plus advisers to support and where necessary constructively challenge employers . Positive images of carers as valued members of workforce!

Getting a life what do carers and users really want?

Treating people equally does not mean treating them the same: Recognition of the family, cultural, social and
age related context for decisions about care and support. Managing transitions: From school to adult services, from hospital to home.

Recognising the range of family priorities: Families

may have multiple care needs (eg children, older relatives) support may need to be tailored to working lives. Managing anxieties: Closure of traditional services seen as disaster unless clarity about alternatives.

Doing thing differently the rise of the social enterprise!

The communication challenge: Users, carers, Councils,

commissioners and providers need new understanding of what we mean by care and support.

Finding the local leaders and entrepeneurs (and taking

the risk out of doing things differently.)

Market intelligence - Knowing your community: From

dog walking and duvet washing to horticulture and herbs, making the business case.

Market Development A new dialogue between providers,

commissioners and users/carers .

What if? Safeguarding and risk management

Challenge for CQC and other regulatory bodies and for user and provider networks: current focus on residential care (Winterbourne View, elder care in NHS provision) BUT: Proportionate risk management a challenge for all services: Adult Safeguarding Boards statutary requirement - can we use them creatively and strategically to improve confidence in quality and safety of local services? The duty to investigate people using services who may be at risk of abuse of harm: Steven Hoskin case (and EHRC report, 2011) a reminder that the community can also be a dangerous case How do we balance personal autonomy with personal safety?

The Public Sector Equality Duty

Equality Impact Assessments and JSNA offer opportunities for providers to work across traditional boundaries with local carers and users as strategic partners in developing and shaping local care services. Providers as users and carers champions Public Sector Equality Duty: Are local

Commission arrangements proactive in: Eliminating unlawful discrimination Advancing equality of opportunity Fostering good relations

We can do things differently.

Personalisation: A concerted focus on REAL choice and

effective use of resources.

Shared lives: We ALL share lives in different ways but we

now have the opportunity to think differently about choices and longer term outcomes.

Social enterprise: Lets model our expectations of disabled

and older people on other citizens in local communities.but remember that changing services means mutual respect and understanding on a very different journey.