Review of Respite for Carers.

Information about the publication of Ministerial Decisions

A formal published “Ministerial Decision” is required as a record of the decision of a Minister (or an Assistant Minister where they have delegated authority) as they exercise their responsibilities and powers.

Ministers are elected by the States Assembly and have legal responsibilities and powers as “corporation sole” under the States of Jersey Law 2005 by virtue of their office and in their areas of responsibility, including entering into agreements, and under any legislation conferring on them powers.

An accurate record of “Ministerial Decisions” is vital to effective governance, including:

demonstrating that good governance, and clear lines of accountability and authority, are in place around decisions-making – including the reasons and basis on which a decision is made, and the action required to implement a decision
providing a record of decisions and actions that will be available for examination by States Members, and Panels and Committees of the States Assembly; the public, organisations, and the media; and as a historical record and point of reference for the conduct of public affairs

Ministers are individually accountable to the States Assembly, including for the actions of the departments and agencies which discharge their responsibilities.

The Freedom of Information Law (Jersey) Law 2011 is used as a guide when determining what information is be published. While there is a presumption toward publication to support of transparency and accountability, detailed information may not be published if, for example, it would constitute a breach of data protection, or disclosure would prejudice commercial interest.

A decision made (29/05/2007) regarding: Review of Respite for Carers.

Subject:	Review of Respite for Carers
Decision Reference:	MD-H SS-2007-0035		Exempt clause(s):
Type of Report: (oral or written)	Written		Person Giving Report (if oral):
Telephone or e-mail Meeting?			Report File ref:
Written report – Title	Review of Respite for Carers
Written report – Author (name and job title)	Review Steering Group comprising Marnie Baudains, Directorate Manager, Social Services, John Cox, Service Manager, Adult Social Work, Dr Margaret Bayes, Chairman, Jersey Association of Carers, Mrs Fiona Hagg, Carer Representative.
Decision(s): 1) The Minister approved the development of a Carers Strategy for Jersey in line with the recommendation of the Review of Respite Services for Carers. 2) The Minister approved the establishment of an independently chaired Strategy Development Group comprising senior representatives of States departments (Health and Social Services, Social Security, Education, Sports and Culture), voluntary sector service providers and representative bodies, including, in particular, the Jersey Association of Carers (JACI).
Reason(s) for decision: In December 2005, at the request of the Jersey Association of Carers, a review of respite services for carers was commissioned by the Chief Executive of Health and Social Services. The key recommendation – that a Carers Strategy for the Island should be developed – requires the leadership of the Health and Social Services Ministry and the participation of a number of other States and voluntary sector agencies.
Action required: The Directorate Manager of Social Services to forward to States Greffier, and Publication Editor, for submission to the States as an RC.
Signature: (Minister/ Assistant Minister)		Date of Decision: 29 May 2007

Review of Respite for Carers.

Health and Social Services Department

Review of Respite

Services for Carers

September 2006

Introduction

Every day in the UK another 6000 people take on a caring responsibility and it is estimated that in Jersey the figure is in the region of 7 people. They work without payment to provide help and support to a partner, child, relative, friend or neighbour who could not manage without this assistance. Carers come from all walks of life, cultures and ages and they are taking on significant caring tasks and responsibilities. Carers are often socially isolated, facing poverty, ill health, depression and isolation.

This paper sets out to provide a report on the work undertaken on behalf of the Chief Executive in reviewing with Jersey Association of Carers the services available to provide respite for carers in Jersey.

Background

Following an initiative from Jersey Association of Carers in December 2005 the Chief Executive of Health and Social Services requested that Social Services, jointly with the Jersey Association of Carers, take the lead on a wide-ranging, inter-agency review of respite services for carers.

The Terms of Reference for the review were established and agreed in January 2006.

Terms of Reference of the Review

It is recognised that when a person is taking care of somebody, they also need to think about caring for themself. Depending on the type and intensity of care needed, their own health and well-being can be compromised by looking after someone else.

There are a number of ways that they can get some respite from their caring role:

Domiciliary respite:

Someone comes into the cared-for person’s home and takes over care for a while (a few hours or, sometimes, overnight) so the carer can go out or have some time to themselves. This is sometimes referred to as a sitting service.

Day respite:

Carers can sometimes get a break when the cared-for person is involved in other activities – for instance at school, at a Day Centre.

Residential respite:

The cared-for person goes away to be looked after by someone else for a short period in residential or nursing respite care.

Emergency respite:

Required when the carer is taken ill suddenly or when they may be called away at short notice.

This review takes account of other pieces of work including the reviews of Day Care and Continuing Care and any other relevant studies carried out in Jersey or other jurisdictions.

In particular, the review examines 5 key issues:

· Carer and service user views

· Current provision and services

· Access to and co-ordination of services

· Availability of resources and funding options

· The provision of carer assessments

Whilst the focus of the review is meeting the respite needs of carers and those that they care for, we took a “best value” approach i.e. looking at the quality of the service from the user’s point of view and proposing creative uses of existing resources to both ensure and deliver the best possible respite services.

Key service providers have been consulted.

Methodology

The findings of this review are based on a questionnaire sent to 65 independent sector and statutory organisations assessed as being likely to have an interest and/or connection to carer’s issues, 41 responses were received (63% response rate) which were fine tuned and developed in a half day workshop with representatives from those organisations. In addition States employees were encouraged to contribute through the “Changing States” newsletter which based on national and local figures means that it would reach 900 States employees who are carers themselves.

This work was supplemented with a table top review of a range of national and international publications relating to carers. Direct input was provided by Jersey Association of Carers and the review also drew on the work undertaken as part of the Island wide Strategy for an Ageing Population 2003.

Policy developments in the UK

There are three key Acts of the UK Parliament – each of which is directly concerned with the needs of carers in the UK. Interestingly each Act started life as a Private Members Bill.

 Carers (Recognition & Services) Act 1995

 Carers & Disabled Children Act 2000

 Carers (Equal Opportunities) Act 2004

Of the three Acts that deal directly with the needs of carers, the 1995 Act contains the core statutory responsibilities. It introduced the concept of a ‘carer’s assessment’. The 2000 Act extended the rights of carers, to include the right to support services, and for these services to be made available by way of direct payments and ‘vouchers’. The 2004 Act extended the obligations in relation to assessments. It introduced (1) a statutory obligation on social services to inform carers of their

rights and (2) requires carers’ assessments to consider whether the carer works or wishes to work and / or is undertaking, or wishes to undertake, education, training or any leisure activity.

There is currently no similar legislation in Jersey and the approach has been to voluntarily incorporate best practice through consultation and negotiation with Carers, for example, the introduction of the offer of a carer’s assessment from the adult social work team which represents an individual assessment of the carers needs in their own right.

Local and national review findings

A carer is someone, who, without payment, provides help and support to a partner, child, relative, friend or neighbour, who could not manage without their help. This could be due to age, physical or mental illness, addiction or disability

Anyone can become a carer; carers come from all walks of life, all cultures and can be of any age. The following represent some facts and figures concerning Carers some of which originate in the UK whilst others are based on an analysis of Carers in Jersey.

¡ In the UK one in eight (1 in 8) adults are carers... around six million people

¡ Carers save the economy £57 billion per year, an average of £10,000 per carer

¡ Over 3 million people juggle care with work

¡ 1.25 million people provide over 50 hours of care per week

¡ People providing high levels of care are twice as likely to be permanently sick or disabled

¡ Over 1 million people care for more than one person

¡ 58% of carers are women and 42% are men

¡ By 2037 the number of carers could have increased to 9 million

Carers UK –“The voice of carers 2005”

When we consider some of the local evidence we have in Jersey we come up with very similar figures:

¡ In Jersey around 15% (1 in 7) of people provided some unpaid care.

¡ This equates to around 10,000 people in Jersey providing unpaid care to someone.

¡ The overall percentage of unpaid carers is very similar to the figure of 13% recorded in England and Wales in 2001

¡ Of the people who received help, 85% received it from family members and almost two-thirds (64%) were aged 70 and above

“ Island wide strategy for an ageing population 2003”

In addition the research that was undertaken to gather more detail on the pattern of caring in Jersey shows that:

The age profile of people receiving care in Jersey is reflected in the nature of care given:

¡ 40% receive help for age-related problems

¡ 24% as a result of long-term physical ill-health

¡ 13% as a result of long-term mental ill-health

¡ 24% receiving care because of having a disability

¡ The majority of carers were providing up to 10 hours care a week, but nearly a fifth were providing over 60 hours of care a week

“ Island wide strategy for an ageing population 2003”

Though carers' contribution to the work of Health and Social Services has generally been under-recognised in the past, that trend has started to change both locally and nationally Local evidence indicates that the opportunity for an individual to be supported and cared for in the community offers an enhanced quality of life, facilitates choice and enables people to remain with family and friends and is normally a highly cost effective form of support.

It is also recognised that there can be an enormous physical and emotional cost to providing care for a dependent relative, friend or neighbour. Research carried out by Carers UK reveals that those carers who are providing high levels of support are more than twice as likely to suffer from poor health compared to those who have no such responsibilities. . Ill-health in carers is not determined by age. Younger carers are at a significantly higher risk of poor health than their peers and likely to continue to suffer from these conditions as they grow older. Research shows an increased morbidity once taking on a caring duty.

Carers report a range of physical and mental health problems incurred as a result of their caring responsibilities. Physical health problems include injuries suffered from having to lift or handle a disabled person as well as high blood pressure and heart problems associated with stress. Mental health problems are even more prevalent. Many carers present with anxiety and depression as well as loss of confidence and self-esteem. Female carers are more likely to suffer mental health problems than their male counterparts and the highest incidences of mental health problems occur at the beginning of caring and once caring has ceased.'

Evidence shows that the causes of ill-health among carers are based on the following factors:

· Lack of information - timely information is very valuable to carers but many are unaware of the respite and financial support available to them. Access to information is even more problematic for those living in rural areas and for those from minority ethnic groups.

· Inadequate support - carers can be on call 24 hours a day, constantly worried about the person they care for and tasked with physically demanding work such as moving and lifting to bathe and dress. If carers do not get an adequate break, their mental well-being is greatly affected. Current support arrangements are not considered fit for purpose by most carers

· Isolation - the time devoted to caring means less time for socialising and many carers have to give up work. They can find themselves increasingly isolated under their new duties

· Financial burden - one in five carers have to give up work to take on their caring role and often find it increasingly difficult to manage financially. Money worries account for some of the stress experienced by carers

For the Health and Social Services Department the cost of carers' ill-health is potentially substantial both in terms of treating the carer and, should the carer reach the need for inpatient care, having to pick up the care of the person they look after.

Summary

The following represent the key findings arising out of an analysis of the responses to the questionnaire, the workshop and our research into national developments relating to carers issues:

Health consequences for Carers:

Carers suffer from distinct health problems occurring as a direct impact of their caring duties. Research carried out by Carers UK reveals that carers who provide high levels (more than 50 hours) of care are more than twice as likely to suffer from poor health compared to people without caring responsibilities. Ill-health in carers is not determined by age. Younger carers are at a significantly higher risk of poor health than their peers and likely to continue to suffer from these conditions as they grow older. Research shows an increased morbidity once taking on a caring duty. Carers report a range of physical and mental health problems incurred as a result of their caring responsibilities. Physical health problems include injuries suffered from having to lift or handle a disabled person as well as high blood pressure and heart problems associated with stress. Mental health problems are even more prevalent. Many carers present with anxiety and depression as well as loss of confidence and self-esteem. Female carers are more likely to suffer mental health problems than their male counterparts and the highest incidences of mental health problems occur at the beginning of caring and once caring has ceased.

Carers’ assessments:

Carers’ assessments offer the carers the opportunity to have their own needs assessed and recorded as a matter of routine. As further measures are introduced to tackle deprivation and poor health, carers' needs should be encompassed in the plans but separately assessed. Self-assessment should be encouraged but also backed by professional support in frontline health services.

Carers’ assessments will over time assist in the long term planning arrangements by “flagging up” areas of service deficits.

Integrated planning:

Local integrated planning to ensure consistent and integrated services is vital for carers. Better working across organisational boundaries would support carers to manage their time and commitments and enable them to play a role in society beyond that of being a carer.

Carers’ strategy:

A Carers Strategy will need to be developed with a new backbone of carer rights, independence and choice rather than an emphasis on state-led action for carers. It must incorporate plans to support carers' wishes to play an active and full part in society. Whilst the Health and Social Services Ministry is likely to take the lead on the strategy; development and action must cross departmental boundaries to take a “whole-person” approach. There now needs to be acknowledgement of the number of agencies that play a part in carers' lives and that each decision taken by these agencies may have an impact on the decisions taken by others. The Carers Strategy must be fit for the future and its delivery fit for regular scrutiny.

Local care agencies must now work in partnership to deliver high-quality respite services for carers. By engaging carers in the planning and design of services, they will develop models fit for the purpose of caring for carers. Carers should be considered in the wider review of engaging with patients and the public, particularly for the expertise they bring with them.

Respite services:

Local evidence from JACI, the questionnaire and the workshop indicates that there is a current lack of provision and that a more flexible and responsive range of respite services is needed. In addition to high quality residential respite there needs to be alternative provision including domiciliary, day and emergency respite.

There is also evidence of the diversity of small pockets of services that are not well known about and clearly there is a need for improved sign posting and coordination of existing services.

Key points

There are currently in the region of six million carers in the UK with an estimated 10,000 carers in Jersey:

· In the UK over one million carers care for more than 50 hours per week. This is comparable to funding a second health service.

· In Jersey the estimate is that 1 in 7 people have a caring responsibility.

· Carers are key partners in the provision of care by Health and Social Services and are often experts in the service users care programmes.

· Research shows that without adequate support carers frequently suffer higher rates of illness, stress and depression.

· Improving services to meet carers’ needs can significantly improve the attainment of the States priorities to make public services more cost-and time-efficient. Carers UK estimates that carers save the UK economy £57 billion per year.

· Across the States there are huge variations in the recognition of carers’ needs and the support they receive.

· It is generally recognised that with adequate support the care provided by carers is second to none.

· Evidence indicates that investment in the support of carers is money well spent as it can save money in the longer term.

Recommendations

The review group would wish to make the following recommendations which we believe to be consistent with the key elements of the States Strategic Plan:

· That work is undertaken during 2007/8 to develop an overarching States Carers Strategy in partnership with Carers and other organisations. Such partnerships will deliver a robust framework to establish carer’s rights. This is particularly relevant given what we know about the forthcoming demographic changes and the significant increase in the number of older dependent people in Jersey.

· The production of a Directory of Respite Services available for carers.

Update: the directory has been completed and is in draft form ready for printing. It will be distributed in printed form and linked to H&SS website.

· The reorganisation of respite care afforded by the closure of the facilities at Overdale should take account of the views of carers in relation to the development of a respite unit model of provision.

Update: Carers asked that dedicated respite provision/beds, separate from long term residential provision is established for clients moving from Leoville and McKinstry Wards. This requirement has been reflected in the specifications required of the private sector service providers.

· A follow up workshop with the key stakeholders should take place in September 2006.

Update: the workshop took place on Septenber 25th 2006.

· A business case for additional resources for the purchase and provision of a flexible range of community based respite services should be submitted for 2007/08/09.

Update: business cases submitted for 2007 and 2008.

· Consideration should be given to developing the role of respite care coordinator

Update: the closure of facilities at Overdale provided the opportunity to establish a small multi-disciplinary team with responsibility for long term care placement and review, plus co-ordination of respite care provision.

· The States should explore the option of developing a respite care allowance for carers through the Income Support system.

Update: discussions are on-going with the Social Security Department on eligibility for a respite care component under the new Income Support system for people with complex and high level needs who are cared for at home.

· Develop the capacity to provide carer’s assessments in all appropriate cases.

Update: a Carer’s Assessment tool, which can also be used as a self-assessment tool, has been developed and will shortly be piloted.

Conclusions

This report relates to a period of transition in the recognition of the role of carers in the community and the development of services to support them.

The findings and recommendations are based on and supported by acknowledged best practice in other jurisdictions and our own experience in Jersey. The recommendations are supported by Jersey Association of Carers Incorporated and represent a very real opportunity to move forward in partnership with Carers.

Clearly the development of high quality support services for carers is a high priority in Jersey and will result in financial benefits to the States of Jersey in the medium and long term. On this basis there are clear tasks which need to be undertaken and the next 2 years should see both consolidation and marked progress in developing a island wide service for Carers.

September 2006

Appendix 1

Further information

Carers U K www.carersuk.org

Crossroads - Caring for Carers www.crossroads.org.uk

Princess Royal Trust for Carers www.carers.org

Range of policy initiatives, including Our health, our care, oursaywww.dh.gov.uk

National Strategy for Carers (1999) www.dh.gov.uk/Publications And Statistics/Publications

Carers (Equal Opportunities) Act (2000) www.dh.gov.uk/Publications And Statistics/Publications

Community care (delayed discharges etc)

www.dh.gov.uk/PublicationsAndStatistics/LettersAndCirculars/HealthService

Circulars

National standards, local action: health and social care standards and planning framework 2005/06 - 2007/08 www.dh.gov.uk/Publications And Statistics/Publications

In Poor Health: the impact of caring on health (Carers UK , 2004) www.carersuk.org/Policy and practice/Policy Resources

Directory of local organisations offering support and information to carers (Carers UK ) www.carersuk.org/lnformation/Findinghelp/Local Organisations

Our health, our care, our say. NHS Confederation 2006 www.nhsconfed.org/docs/briefing128.pdf

The Government's blueprint for reforming the welfare state. NHS Confederation 2006 www.nhsconfed.org/docs/consultation-no-22.pdf

Appendix 2

Health and Social Services Ministry - Review of Respite Services for Carers

Reference Group

Abbey field

After Breast Cancer

Age Concern

Alzheimer’s

Arthritis Care

Autism Jersey / Jersey Autistic Society

Aviemore Children’s Centre

Brig-Y-Don Children’s Home Inc

British Heart Foundation

Caesarean Muscular Dystrophy

Cancer and Leukaemia in Childhood

Cancer BACUP

Eastern Good Companions

Eating Disorders

Family Nursing and Home Care

Headway

Jersey Across Group

Jersey Addiction Group

Jersey Assoc for Colitis and Crohn’s Disease

Jersey Assoc for Hearing-Impaired Children

Jersey Assoc for Spina Bifida and Hydrocephalus

Jersey Asthma Soc

Jersey Blind Soc

Jersey Cancer Help Centre

Jersey Catholic Pastoral Services

Jersey Cheshire Home

Jersey Council on Alcoholism

Jersey Diabetic Assoc

Jersey DIPS

Jersey Disabled Holiday Group

Jersey Epilepsy Assoc

Jersey Focus on Mental Health

Jersey Glaucoma Assoc

Jersey Haemophilia Group

Jersey Hospice Care

Jersey Mencap

Jersey Multiple Sclerosis

Jersey Ostomy Soc

Jersey Parkinson’s disease Soc

Jersey Soc for Deaf Children and Young Adults

Jersey Soc for the Deaf and Hard of Hearing People

Jersey Society for the Disabled

Jersey Sports Assoc for the Disabled

Jersey Stroke Club

Les Amis

Little Sisters of the Poor

Maison des Landes Trust

Methodist Homes for the Aged (Jersey)

Motor neurone Disease Assoc

Muscular Dystrophy

National Assoc for the Welfare of Children in Hospital

National Meningitis (Jersey)

National Osteoporosis Soc Support Group

Scope (formerly Jersey Spastics Soc)

Services and Rehabilitation for Older People, Overdale Hospital

Social Services, Adult Services

Social Services, Children’s Services (Young Carers)

Social Services, Special Needs Service

Appendix 3

Health and Social Services Ministry - Review of Respite Services for Carers

Steering Group

Ms Marnie Baudains Social Services, Directorate Manager

Mr John Cox Social Services, Service Manager, Adult Social Work

Mrs Fiona Hagg Carers representative

Dr Margaret Bayes Jersey Association of Carers Incorporated, Chairman

Mrs Kate Rogers Social Services, Administrator