Carer Awareness

The Definition of a Carer… “A carer spends a significant proportion of their life providing unpaid support to family or potentially friends. This could be caring for a relative, partner or friend who is ill, frail, disabled or has mental health or substance misuse problems.” Carers Strategy 2008: Carers at the Heart of 21st Century families and communities.

Legislation & Guidance… The revised National Carers Strategy 2009; Carers at the heart of 21st century families and communities. Is a ten year plan that includes £255m of new money for carers, including local health trusts receiving £150m over the next two years for breaks and respite. The strategy sets out the Government’s 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. Support will be tailored to meet the individual’s needs, enabling carers to maintain a balance between their caring responsibilities and a life outside of caring, whilst enabling the person they support to be a full and equal citizen.’

Legislation & Guidance… To ensure that carers receive the recognition and support they need and deserve, the government has produced legislation and guidance relating to carers, this includes: The Carers (Recognition and Services) Act 1995 protects carers’ basic rights to have their needs assessed by the local authority when it carries out an assessment of the person they care for. The Act also recognised that carers’ should have their needs re-assessed if the cared for person’s needs or circumstances change.

Legislation & Guidance… The National Carers Strategy 1999 set out measures to help carers into employment, access to information and support services to maintain their own health and well-being and achieve a better quality of life. The Carers and Disabled Children Act 2000 gives local authorities the power to supply certain services, which help the carer and the person being cared for, direct to the carer. The Act provides a new right for a carer to be assessed even if the person they care for has not been assessed.

Legislation & Guidance… The Health and Social Care Act 2001 allows carers to receive direct payments, instead of the care provided by the local authority. The Carers (Equal Opportunities) Act 2004 places a duty on social services to explore the carer’s wishes regarding work, learning and leisure activities in their assessment. It gives local authorities the power to request the help of housing, health and education services to deliver the outcome that is needed. It also ensures that carers are informed of their rights

The impact of caring… Loss of identity No breaks or time off Health problems, particularly problems with bad backs Depression Relationship difficulties Poor emotional and physical well-being Financial problems and debt

Good Working Practice with Carers

How can health staff support carers…? It’s important to recognise that members of the multi disciplinary team have a central role in terms of identifying and supporting carers. Furthermore, professionals can play a crucial role in encouraging carers to think about their own needs at a much earlier stage, which can help to prevent feelings of frustration or isolation.

How can multi-disciplinary team staff support carers…? Patients and carers expect doctors and nurses and members of the multi-disciplinary team to be well informed on local health and social care provisions, and benefits. While it is unrealistic to expect staff to know everything it is helpful to be able to act as a signpost to direct carers to the appropriate person or place.

How can multi-disciplinary staff help? Although services such as carers’ centres are often easily accessible, carers are more likely to use them if they have been recommended by people they know and respect – perhaps a friend, or a professional such as a GP or practice nurse. Princess Royal Trust for Carers (1999) Seven and a half minutes is not enough. Things to consider… A referral to South Lakeland Carers for a Carers’ Assessment can be initiated at any point in the discharge planning process. Any member of the multi-disciplinary team can make a referral to South Lakeland Carers on behalf of a carer.

Carers’ Experiences & Common Barriers… Carers are often faced with particular concerns when the person they care for is in hospital. Particular issues include: Recognition of the carer’s role. Information about the treatment, prognosis and condition of the person they care for. Involvement in decisions about future care, particularly where the carer has a role. Training to carry out any caring tasks required, both to ensure correct technique but also to protect the health of the carer Contribution to decisions which affect them e.g. appropriate discharge dates Having the correct equipment and adaptations in place at home before discharge Assessment of the carer’s needs in their own right.

Carers’ Experiences & Common Barriers… Some common barriers include: The day-to-day pressures of caring:  Lack of time is a factor. Some carers experience tiredness, depression, loss of confidence and lack of self esteem which lead them to feel helpless and to give up if communication problems arise. Previous bad experience of not being listened to or taken seriously is very off-putting. Some carers will need to be persuaded that their views really do count. Getting the right information at the right time is hard, from getting answers to specific medical problems to finding out who has responsibility for a particular decision. Carers of people with mental health problems experience particular problems because of difficulties and caution around confidentiality.

Carers’ Experiences & Common Barriers… Using jargon – it’s hard to communicate with someone if they don’t speak the same language as you! Carers can be put off if they encounter unsympathetic or patronising attitudes. It is particularly frustrating if a professional does not acknowledge or value the role of carer. Sometimes carers concerns do not match professionals’ own priorities. There is an imbalance of power in carer/ professional relationships. Carers feel very vulnerable, particularly if making complaints. Fear of being labelled ‘trouble-maker’ and of victimisation or retaliation (e.g. withdrawal of services) discourages many carers from raising issues of concern.

Carers’ Experiences & Common Barriers… Be aware that some carers may be socially excluded in other ways -  e.g. they may have a disability or come from a black or minority ethnic background and may experience additional barriers, such as language or access to services. Carers experience a range of emotions that can affect communication such as anger, guilt, frustration, inferiority, fear and despair. As a coping mechanism, and in order to have some sense of control, carers try to detach themselves, if possible, from the rawness of their emotions. However, for some, anger is a very powerful motivator. It can give carers the determination to persevere until a proper resolution is reached.

Identifying Carers… Many carers have health problems of their own which they may neglect. These health problems are often caused or exacerbated by the physical and emotional demands of their caring role. If the carer’s health deteriorates then it is likely that they will need help and support to continue to care, or they may be unable to continue to care.

Identifying Carers… Identifying and working with carers also: Ensures effective communication and reduces the risk of misunderstandings. Improves the patient and carer’s experience of the hospital. Improves the discharge planning process. Reduces length of stay and delayed transfers of care. Ensures that carer’s are able to access the information, advice and support they may need to assist them in their caring role. Ensures that carer’s are offered training and advice with any equipment they may need to use when caring. Ensures that the carer is offered a Carer’s Assessment. Reduces the rate of re-admissions.

Outcomes for Carers Carers who are supported: Enjoy the best possible quality of life Are able to balance caring with a life of their own Are able to continue in employment Are able to stay mentally and physically well Have access to integrated and personalised services

Identifying and Supporting Young Carers… The National Carers Strategy states that ‘Children and Young People will be protected from inappropriate caring roles and have the support they need to learn, develop and thrive, to enjoy positive childhoods and to achieve against all the Every Child Matters outcomes’ Young Carers are children/young people aged between 5 and 19 years who provide substantial practical and/or emotional support to a family member who would be unable to manage without their help. The nature of the caring task involves significant responsibilities, often on a regular basis, more than would normally be expected of a child of their age. The person being cared for may have a physical disability or chronic illness, learning disability, sensory impairment, problems with their mental health, or substance misuse.

Carers Assessments

Carers’ Assessment… The Carers’ Assessment is an essential ‘first step’ in accessing support services. For the carer to have the opportunity to discuss how caring affects their life can be a valuable experience in its own right. It can also provide information about other services that may help the carer. Carers who are providing regular and substantial care have a right to a Carers Assessment. This gives the opportunity for carers to record the amount and type of care they give, and how it affects their life e.g. health, relationships, income, employment.

Carers’ Assessment… South Lakeland Carers has a contract with Adult Social Care to complete Carers Assessments on behalf of Cumbria County Council Carers have a right to a Carer's Assessment even when the cared for person has refused an assessment for community care services, or has refused to receive those services. A Carers’ Assessment is also an opportunity for the carer to talk about whether they feel able to continue to care and receive advice and support.

Eligibility Criteria… All carers are legally entitled to a Carers’ Assessment The carer must be aged 16 or over and must be caring for someone over 18. The carer must be providing regular and substantial care The cared for person must live in their own home, within South Lakes The cared for person would be eligible for, or could be in receipt of a community care service. Carers may have an assessment of their own needs even if the person they are caring for refuses an assessment and/ or services

South Lakeland Carers Services Following completion of a Carers Assessment we are able to offer the following services: One to one support Carers Emergency Card Counselling Therapy treatments Sitting & Befriending Service Carer training Support Groups Trips and activities Newsletter In 2011/2012 (year ending 31/3/12) we completed/delivered 308 carers assessments 188 contingency plans – 546 carers currently have an emergency card

Any Questions?