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Information and Advice for family carers

What is caring? In the UK, every day 6,000 people will start looking after someone close to them1. They do this unpaid. Their relative, friend or neighbour may be disabled, chronically ill, have mental health issues or misuse substances, dementia or increasing needs as they get older and more frail. For many, caring can start suddenly as a result of an accident, stroke or heart attack; for many more their caring role increases slowly, such as when someone becomes frail or has an illness that progresses, and the impact on them increases too. Caring can affect the whole family. No matter how your caring role starts it is important that you look after yourself as it becomes part of your life.

Do you help another person usually a relative or friend in their day to day life? Do you support a family member, friend or neighbour with everyday tasks such as washing/bathing, toileting, cooking, taking medication or going out? (You don’t have to live with them). Does caring affect how much sleep you get? Have you had to give up work completely or change your work due to the care and support you provide? Does it have an impact on your wellbeing, or your children?

Then you’re probably a family carer Your children may be Young Carers Essentially, a carer is someone who helps another person, usually a friend or relative, in their day-to-day life but is not the same as someone who does so professionally or through a voluntary organisation. 2

Who are Carers Trust? Carers Trust is the largest UK network of local charities for carers, with carers and about carers, working to improve support, services and recognition for anyone in a caring role. Carers Trust Cambridgeshire / Carers Trust Peterborough is a local independent organisation providing a range of support. Our vision is to ensure that carers and people with care needs can access quality information and support they need to live their own lives. We are the leading local fully Care Quality Commission (CQC) compliant organisation providing care, respite and breaks specifically for family carers too. This Booklet is designed to tell you more about: 

Looking after yourself as a carer

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The law and what you are entitled to

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Examples of support and services and how to access them

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The importance of independent advice about finances

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Different types of benefits and financial assistance

Family Carers are estimated to save the economy £119 billion a year2. This is more than the annual spend on the NHS, but being a carer can take a toll on carers’ health. NHS healthcare is usually free. Social care is usually paid for by the council or individuals. The boundaries between health and social care and the rules about eligibility and paying are often misunderstood and are changing. 3

Be prepared… It is important that the condition of the person for whom you care doesn’t define you both. Try to talk about this with them, your family and friends. It will help you all to understand the impact that being a carer can have on you as an individual. Look at the card below and try to do all of these things - it isn't being selfish, it is being sensible. Ask for help and support - it isn't a sign of weakness, everyone has their limits. Recognise yours and call on those who can support you. Get them involved in your What If? Plan for emergencies (see page 6). Remember, it is perfectly normal to have a range of difficult emotions, to feel angry or down, to have good days and bad days, so don’t feel guilty on those days.

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The Care Act A new law (the Care Act 2014) came into place in April 2015 bringing changes to the services provided for people receiving care. It also brings with it significant improvements for unpaid family carers, whose role in society is becoming more widely recognised. The Act acknowledges that family carers need to be better supported to continue in their caring role. It requires Local Authorities to promote wellbeing of all carers, ensure information, advice and support is available and to prevent, reduce or delay their needs from becoming more serious.

National Changes Some of the national changes impacting on unpaid family carers as a result of the Care Act (2014) include: 

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Giving family carers clear rights. (Young Carers and Parent Carers will also have new rights, through the Children and Families Act 2014). Putting the rights of family carers on the same footing as those they care for, regardless of how much care they provide, with extra support if they are eligible. Placing emphasis on carers’ wellbeing: ensuring that services are in place to protect their dignity, promote their physical and mental health, and ensure they are able to lead a fulfilling life. A requirement to provide information and advice regarding care and support available locally. This includes: types of support available, choice of provider: how to access support including financial advice, how to raise concerns. Taking a whole family approach, including combining assessments if this is the family's preference. Helping family carers put together a support plan. Continued support if you move to another local authority area. 5

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Allowing Local Authorities to delegate some of its responsibility to other organisations. Ensuring Young Carers / Young Adult Carers who are receiving support continue to do so whilst their needs are assessed as they become an adult, to ensure a smoother supported transition to adulthood. Cambridgeshire County Council now invests £850,000 a year with Carers Trust Cambridgeshire and partners to support Carers. You can see below the range of information/advice and services that are available as part of our Local Authority commitment to all age Carers in Cambridgeshire.

‘What If?’ Plan - What If something happened to you? Carers are supported to create a What If? Plan involving family, friends and neighbours who are happy to help in an emergency. It can include formal emergency cover from Carers Trust Cambridgeshire if needed. Where needed, the formal emergency cover from Carers Trust Cambridgeshire is free for up to the first 24 hours. If formal support is required beyond the first 24 hours this can be purchased from Carers Trust Cambridgeshire, or any other provider of the Carer’s choice. Carers will be issued with a What If? card which gives peace of mind knowing that in the event of an emergency their contingency plan can be accessed through an emergency number available on a 24/7 basis every day of the year. The What If? Plan will be available to carers in Cambridgeshire irrespective of whether they meet eligibility or not. It replaces the previous ICER (Individual Carers Emergency Respite) scheme. If you wish to register for a What If? Plan, contact us on 01480 499090 or [email protected]

What Carers Trust Cambridgeshire / Carers Trust Peterborough can help with… ● ● ● ● ● ● ● ● ● ● ● ● ● ●

Flexible breaks for family carers of all ages Carer’s Assessments Award winning Family Carers Prescription - personalised support and a short break of your choice if possible. This service is designed to respond quickly to urgent need if required. Carers emergency planning (What If? Plan) and response Groups and activities for children & young people with disabilities Carers groups and peer support Carers Centre (Peterborough) Dementia Group for individuals and their Carers Volunteer Sitting Service (Peterborough) Information, support & training for family carers Young Carers & Young Adult Carers support Carer awareness training for staff End of Life & Palliative care A voice for carers.

One Place Addenbrooke’s Hospital One Place is a community hub which is based in Addenbrooke’s Hospital (Cambridge University Hospitals NHS Foundation Trust (CUHFT)). When facing the main entrance from outside, the office can be found to the right. Telephone: 01223 596463. Carer Support Officers from Carers Trust Cambridgeshire are based in One Place to help identify and provide advice for family carers of people who are in hospital or attending as an outpatient, to family carers who are patients of the hospital and also to members of staff who are family carers. Carer Support Officers are able to write a Family Carers Prescription to enable the carer to have a flexible break, receive support or information, and support with planning for emergencies. Other voluntary organisations are also based at One Place.

Arthur Rank Arthur Rank Hospice is dedicated to providing specialist palliative care and support to adult patients and their family, friends and carers. All care provided is free of charge and is offered to people living throughout much of Cambridgeshire. Carers Trust Cambridgeshire support the work of Arthur Rank by offering Carer support, information and advice to those families linked to the service both onsite and in the community. Please call 01223 596463 for more information and support. If you are supporting someone with a palliative condition, Carers Trust Cambridgeshire provides a range of services that can help you carry out your role and give you a well earned break to protect your own health and wellbeing.

Young Carers and Young Adult Carers There are Young Carers projects enabling children and young people aged 8-18 with a caring role for a family member, to meet with others in a similar situation and to have fun away from their responsibilities. STRIVE is our Young Adult Carers group which supports those aged 16-25 in Cambridgeshire and Peterborough.

Children with Disabilities We offer a variety of clubs and short breaks for children and young people with additional needs aged 5-18. Through these we support children and their families towards independence and help achieve lasting outcomes for the child and the family. Through BBC Children in Need funding, we can offer “Kids and Sibs” activities to young people with additional needs and their brothers/sisters. 8

Tips to maximise your income There are big changes being introduced to the benefits system between 2015-17 (the biggest changes in 20 years!). The benefits system is often confusing and finding out what you are entitled to can be difficult, meaning many people miss out. Each benefit brings its own rules, regulations and potential pitfalls. People of all ages can be entitled to benefits, even children, so make sure you mention them in any benefits discussions. There are often many hidden extras available when you claim certain benefits. These could be available in your area and save you money on things like bus passes, taxi cards, school dinners, school clothing grants, council tax reductions and cinema tickets. If a family member is turned down for disability benefits such as Attendance Allowance, it's not necessarily the end of the matter and you can appeal against the decision. www.entitledto.co.uk/benefits-calculator www.turn2us.org.uk/benefits_search.aspx www.citizensadvice.org.uk

Welfare Benefits3 There are a number of different benefits and Tax Credits you may be able to claim. If you are aged 16-64 and you have a long -term health condition or disability that affects your ability to live independently, you may be able to claim Personal Independence Payment (PIP). All working age adults currently on Disability Living Allowance (DLA) will have to reapply for PIP. Nobody has an obligation to tell you what you're entitled to claim - make sure you seek independent advice.

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If you are under 16 and you have a health condition or disability you may be able to claim Disability Living Allowance (DLA).

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If you are 65 or over when you first claim for a disability benefit and you have care needs, you may be able to claim Attendance Allowance.

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If you are unable to work, you may be able to claim Statutory Sick Pay or Employment and Support Allowance.

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If you work, you may be entitled to Working Tax Credit.

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If you were injured at work or have an industrial disease caused by work, or were injured serving in the armed forces, you may be eligible for financial help.

If you care for someone for 35 hours per week or more and you are below pension age earning less than £110 per week, you may be able to claim Carer’s Allowance. Remember that you may be eligible for other financial help as well, depending on your circumstances. You may be eligible for Housing Benefit or other financial help because you are on a low income and if you have children.

General Benefits Council Tax Discounts People who live alone qualify for a 25% Council Tax discount. If there is no-one in the property, the discount will be 50%. Certain people, including some carers and people with a severe mental impairment, are not counted when the council works out how many people live in a property. Council Tax Reduction Each council has its own rules for Council Tax Reduction which helps people on low incomes pay their Council Tax. To apply contact your local council benefits department. 10

Carer’s Allowance Carer’s Allowance is paid to help you look after someone with substantial care needs. You don’t have to be related to, or live with, the person you care for, but must be 16 or over and spend at least 35 hours a week caring for them, not be in full time education or studying for 21 hours a week or more and earn no more than a specified amount a week (after taxes, care costs while you’re at work and 50% of what you pay into your pension). Carer’s Allowance is taxable. It can also affect your other benefits and/or you may also be able to claim other benefits. You cannot normally get two income-replacement benefits (e.g. Carer’s Allowance and the State Pension) paid together. Usually, for each week you get Carer’s Allowance or the underlying entitlement you also get National Insurance credits and contributions to your Additional State Pension. You should still apply for Carer’s Allowance even if you get these as your benefits might be increased. Disability Reduction Scheme You may be able to pay less Council Tax under the Disability Reduction Scheme if your home has had work carried out on it to help you or someone else living there with a disability. Winter Fuel Payments If you have reached the qualifying age you may be entitled to a Winter Fuel Payment to help pay winter bills. This can be £100£300 depending on circumstances. Warm Home Discount The Warm Home Discount scheme means you could get a discount on your electricity bill if you meet certain criteria. Cold Weather Payments If you’re receiving certain benefits you may be able to get a Cold Weather Payment for each week that the average temperature in your local area is at or below freezing. 11

Help with health costs If you are receiving certain financial help (and your income is below a certain amount) you qualify for help with NHS health costs. This includes free prescriptions, free dental treatment, free NHS eye tests and vouchers to help pay for glasses/contact lenses, as well as reimbursement of fares to hospital for treatment for you or your child. You can also claim for the fares of a companion who needs to travel with you for medical reasons. If you are aged 60 and over, you can get free prescriptions and NHS eye tests regardless of your income. If you don’t qualify for free NHS benefits but have a low income, you may be able to get help with health costs from the NHS Low Income Scheme. Prepayment certificates for prescriptions can also reduce costs if you regularly pay for medication. Budgeting Loans If you are getting certain benefits you can get a Budgeting Loan to help pay for essential things like rent, furniture, clothes or hire purchase debts. The smallest amount you can borrow is £100. Budgeting Loans are interest-free so you only pay back what you borrow. You normally have to repay the loan within 104 weeks. Find out more at www.gov.uk/budgeting-loans Your local council may also be able to help. Visit www.gov.uk/find-your-local-council

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How do I know if I am eligible for social care and if I will have to pay anything? Assessments and Support Planning This describes the process when a social worker or other health or social care professional looks at the needs of somebody with an illness or disability to understand their strengths and abilities and what care and support might be needed to stay independent, safe and well. This will help create a support plan for you. Financial Assessment Local authorities can make a charge for services provided after your Assessment and Support Planning (which vary according to where you live), but this is subject to a means tested financial assessment. Most policies have a minimum (sometimes nothing) and maximum weekly charge. The person receiving the services will be asked to complete financial assessment forms (or these may be completed by the social worker doing the assessment). Completing the forms is important, as if they are not completed, the maximum charge will be payable. Depending on the level of income and the amount of services required, this might still be cheaper than paying for care privately. It is important to note that the assessment is made against the income of whoever receives the service. Care Programme Approach (CPA) Assessment National Service Framework for Mental Health Standard 6 states that where a carer is caring for a patient on an enhanced CPA (Care Programme Approach), the needs of the carer should be assessed, a written plan compiled and that this should be reviewed at least once a year. Family Assessment (Children Act 1989) In the case of a disabled child with special needs, the assessment should look at the family as a whole unit when considering appropriate services for the child and support for the parents (carers).

Carer’s Assessment As a Carer you will be entitled to an assessment no matter what your level of need or the amount of care you provide or your financial circumstances. If eligible, a Carer’s Assessment can lead to support being provided to you or the person you care for to reduce the impact of caring on you. At a minimum all carers must be provided with information and advice on local services to prevent your needs from developing further and to give you the tools to seek further support if needed in the future. Contact Carers Trust Cambridgeshire for further details. Assessments, benefits and support are changing. Register with us to receive information: 0345 241 0954 or [email protected] Occupational Therapy Assessment This looks at the needs of the person cared for, in their environment. It can result in the provision of aids and/or adaptations to the home in order to make life easier. Young Carer's Assessment All Young Carers under the age of 18 have a right to a needs assessment regardless of who they care for, what type of care they provide or how often they provide it. Local authorities must take a whole family approach to assessing and supporting adults so that Young Carer’s needs are identified when undertaking an adult or adult carer’s needs assessment. An assessment can still be requested but should also be offered. 14

Health Assessments Health professionals (district nurses, physiotherapists etc.) will usually undertake their own assessment before starting treatment. We are more used to describing a Doctor's assessment of your health as an "appointment" or "consultation". Health Professionals will also be involved in the "single assessment" process. Discharge from Hospital Under the Delayed Discharges Act 2003, if a patient is due for hospital discharge and the carer is concerned about how they will provide care in their home, they are now entitled to a home assessment, which includes the caring role. This assessment should determine the need for aids and adaptations and home care, the latter being provided free of charge for a temporary period. Personal Budgets A Personal Budget is an allocation of money to an individual who is eligible for services to pay for social care. Eligible carers may also be able to get a Personal Budget to meet other identified needs following their Carer’s Assessment. A Personal Budget can be spent on a provision arranged on your behalf, a Direct Payment or a mix of both. Direct Payment A cash payment provided to meet eligible needs providing greater choice and control. See https://www.gov.uk/benefits-calculators for more details. Ask for more up to date information and seek advice.

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Carers Trust Cambridgeshire & Peterborough Head office: 4 The Meadow, Meadow Lane, St Ives, PE27 4LG

0345 241 0954 or 01480 499090 [email protected] www.carerstrustcambridgeshire.org

Principal funders

01733 645234 [email protected] www.carerstrustpeterborough.org

01223 596463 Carers Trust Cambridgeshire in Addenbrooke’s Hospital

Stay in touch Information is correct at the time of publishing and is subject to change. A new free club from Carers Trust to offer savings to family carers and people with care needs across a whole range of high street retailers, energy providers, insurance and holidays. Find out more www.carersmart.org Registered Charity Number 1091522. West Anglia Crossroads Caring for Carers (known as Carers Trust Cambridgeshire and Carers Trust Peterborough) is a company limited by guarantee. Registered in England & Wales No 4379948. Photos © Carers Trust, Carers Trust Cambridgeshire & David Thorpe Photography Oct 2015

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Review Apr 2016