Carers

Carers in the UK have rights and they may be able to access support and services to help them in their caring roles. Some of the help available to carers is listed below.

A report produced for Pharmacist Support by Dr Liz Seston and Professor Karen Hassell of the Centre for Pharmacy Workforces Studies which analysed data drawn from the 2008 Pharmacy Workforce Consensus considered work/life balance in the pharmacist workforce. It highlighted that caring for an adult or having dual caring responsibilities was consistently associated with increased problems with work/life balance.

Caring can take many forms, ranging from practical tasks, such as shopping and cleaning to the more personal, such as dressing and washing.  For most, caring is a major commitment, which can be rewarding and satisfying. However, without the right level of support, the personal cost of caring can be very high.

Help from the local authority

Local authorities have a duty to perform an assessment of both the care recipient and the carer’s needs. The assessments are called Community Care Assessments. The assessors are ordinarily a combination of a social worker and other healthcare professionals, such as GPs and nurses. Even if the care recipient is paying for their own care package, it is best to have the assessment to ensure that the appropriate care is chosen.

Care recipient assessment

This assessment is known as a section 47 assessment. For further information about the section 47 assessment, see the NHS Choices website.

It is also usual for the carer to be present at the assessment, as their input can best highlight the person’s individual situation and needs. To request an assessment simply contact your local social services department.

For further details about how to find your local council, see the government website.

Carers’ assessments

Carers, or those who are about to take on caring responsibilities, can contact their local authority’s social services department and request a carer’s assessment. The care recipient does not have to be accessing community care services in order for a carer to request this assessment.  A successful assessment could allow carers access to various services, including respite care.

An increasing number of local authorities are now providing specific carers’ services, such as help with paying for taxi fares to get to medical appointments, a mobile phone to help the carer and the person for whom they care to stay in touch, or access to counselling and emotional support. It is necessary to have an assessment in order to access these services.

The NHS Choices website has a carers self-assessment tool. This tool can help carers to assess their own situation and provides clear information on where to get more advice, help or support. For further details, see the NHS Choices website.

Assessments for parents caring for disabled children

Parents caring for a disabled child under the age of 18 are entitled to an assessment from their local authority. This assessment is known as the parent carers needs assessment. Assessments will need to take into account the carer’s need for support and the well-being of both the parent carer and the child needing care. For further information on what to expect from a needs assessment, call the Contact a family helpline on 0808 808 3555 or see the Contact a family website.

Assessments for non-parent carers of disabled children

Non-parent carers of disabled children are those who are caring for a child for whom they do not have parental responsibility, for example, grandparents, uncles or aunts. Non-parent carers do not have an automatic right to an assessment, however, they can still request a carer’s assessment if they can demonstrate that they are providing regular and substantial care.

GP carers register

Many GP surgeries now have a carers register. Carers should check with their local GP and ask to be included if their local surgery has such a register. Benefits of joining the register including routine health checks, having somebody to talk to in confidence about your feelings and access to information about support organisations and services that are available in your local area.

Financial assistance

To determine eligibility for local authority funding for care services, the care recipient will need to arrange for an assessment (see above for further details) and undergo a financial means test.  Please note, local authorities cannot refuse to provide a service on the grounds of cost. However, if there is more than one option available they are able to choose the most cost-effective one. This may mean that choices are more limited for local authority-funded care services.

If the care recipient, or someone living in their household is disabled, they may be eligible for a Disabled Facilities grant from the local authority to help with the cost of adaptations,for example, to install a stair lift, improve access to their home or improve a heating system. For further details, see our Help with home improvements fact sheet.

Benefits

There are a number of benefits that might be available to carers and care recipients.

Carer’s allowance

Carer’s allowance is available to carers who:-

  • provide care for at least 35 hours a week
  • are aged 16 and over
  • earn less than £110 per week (after taxes, care costs whilst working and pension payments).

It is not available to carers in full time education with 21 or more hours a week of supervised study. For further information, contact the Carer’s Allowance Unit on: 0345 608 4321 or see the government website.

Personal independence payment (PIP)

PIP is a benefit that helps with some of the extra costs of long term ill health or a disability for people aged 16 to 64. PIP is gradually replacing Disability living allowance (DLA). You can use the government website PIP checker to find out if PIP will affect your DLA.

Disability living allowance (DLA)

DLA is a benefit that helps with the some of the extra costs of long term ill health or a disability. PIP is gradually replacing DLA, however children under the age of 16 can still claim DLA. For further information on the eligibility criteria for DLA, see the government website.

Attendance allowance (AA)

AA is a benefit that helps with the extra costs of personal care for people aged 65 and over with long term ill health or a disability. There are two rates of AA (lower and higher rate).  The rate received will depend on the level of care needed. For further information about AA, including the different rates paid and how to make a claim, see the government website.

Carer’s credit

People who are caring for somebody for at least 20 hours per week might be able to claim carer’s credit. This is a national insurance credit that helps to maintain your national insurance record, thus protecting your state pension. It is for carers who are not in paid work and do not qualify for any carers’ benefits. For further information on eligibility and how to claim carer’s credit, see the government website.

Other benefits

Carers on a low income or who are not working may be entitled to other benefits or tax credits/universal credits and/or help with housing costs or council tax and in some cases fuel costs.

Turn2us benefits calculator

Turn2us have an on-line benefits calculator that can help people to find out what benefits they may be entitled to. The calculator is free, anonymous and easy to use. For further details about the benefits calculator including a check-list of the information needed to use it, see the Turn2us website.

Pharmacist Support benefit and budgeting advice

Pharmacist Support can refer you for free and confidential benefits advice provided by trained Citizens Advice advisers. They will be able to help you by providing a full benefit check and they can also help you with budgeting. If you would like to be referred you can contact us on our general enquiry line: 0808 168 2233, you can ask us a question via our online enquiry service or email us on: info@pharmacistsupport.org

Making financial decisions on someone else’s behalf

There may come a time when carers will need to make decisions on behalf of the person they are caring for. The best way of doing this will be via a power of attorney. This needs to be set up whilst the care recipient is still capable of making their own decisions. A lasting power of attorney (LPA) stops being in force as soon as the person who set it up dies. Attorneys would not be able to continue to access bank accounts or carry out business on their behalf after death. There are two different types of LPA, one is for property and financial affairs, the other is for health and welfare.

Financial power of attorney 

A financial power of attorney allows people to choose someone else to deal with third parties on their behalf, for example, banks or the local council.

Health and welfare power of attorney

People can also set up a health and welfare power of attorney, for dealing with issues such as NHS treatment, care and housing.

For further information about the different types of power of attorney and how to set them up, see the government website.

Court of Protection

In instances where someone has lost their mental capacity but has not set up an LPA, an application can be made to the Court of Protection to become a deputy to act on their behalf. For further information on becoming a deputy, see the government website.

Employment

Combining work with a caring role can seem daunting, however there are things employers can do in order to help people to manage the two roles.

Flexible working

As the carer of a child or an adult (spouse, partner, close family member or someone living at the same address as you) employees are entitled to request flexible working hours from their employer to help manage both work and caring responsibilities. Flexible working could, for example, mean working part-time hours, working compressed hours (perhaps working longer days to enable you to work a nine day fortnight), working at home or having different start and finish times. Employers have a duty to consider requests for flexible working and it may be worth considering a trial period to give both the employee and employer the chance to try out the new arrangements. An employer can refuse a request for flexible working on business reasons, but these reasons are specified in law. There is a right of appeal. For further information on flexible working requests, see the Advisory, Conciliation and Arbitration Service (ACAS) website.

Time off for emergencies

All employees have the right to take time off for certain emergencies involving a dependant that they care for. This right is for unpaid leave only, however, some employers may choose to pay employees for the time that they are off. Dependants are ordinarily family members, for example, a parent or child, or anybody who lives with you as part of your family and is dependent upon you for care. There are numerous situations that can count as an emergency, examples include:-
  • disruption or break down of care arrangements
  • care recipient falling ill
  • when the person you are caring for dies.

There is no set limit to how much time off employees can take, however time off must be for genuine emergencies. For further information about time off for emergencies, see the Citizens Advice Adviceguide website.

Unpaid parental leave

All parents and employees with parental responsibility are entitled to up to 18 weeks of unpaid parental leave for each child they have who is under the age of eighteen. Employees can take up to four weeks of unpaid parental leave in any year, however some employees may be able to take more time off in one year if their employer agrees to it. 
Other alternatives include taking additional unpaid leave or a career break if the employer agrees. 

Employment advice

Pharmacist Support can provide free, confidential advice on flexible working from an employment specialist. Call us on: 0808 168 2233, contact us on-line via our website or email us on: info@pharmacistsupport.org

If you are a member of a trade union you can contact them for employment advice or you could contact an organisation such as ACAS or your local Citizens Advice Bureau (CAB). You can search for your local bureau on the CAB website.

Caring for an elderly relative

These days most people can expect to live longer and whilst older people can, in the main, look forward to more years of good health, ultimately many need some level of care as they age. My Ageing Parent estimates that currently 12% of the adult population in the UK is a carer of an elderly relative.

In the first instance, a decision needs to be made about the type of care that is needed and where the care will take place. If the care is to take place in the person’s own home, can you provide this care personally, or will you need outside help? Other options for care at home include:-

  • home helps
  • home adaptations
  • meals on wheels
  • a temporary live-in carer.

For further information about care at home options, including a search facility for options in your local area, visit the NHS choices social care website.

Moving an elderly relative into your own home

Sometimes the best solution is to move the person needing the care into your own home. Many of the options such as home adaptations and home helps will still be available and you would be on hand if needed. If the care recipient is simply slowing down and has no specific medical conditions they may even be able and/or willing to help, for example, by contributing financially or helping with babysitting.

Choosing a care home 

The decision to move into a care home can be distressing, however, often it can be the only realistic option. When choosing a care home, think about the type of care needed. Whilst all homes for the elderly are commonly known as care homes, they do not all offer the same levels of care.

Residential or nursing care

Residential care offers food, board and help with washing, dressing and going to the toilet. A district nurse or other medical professional will visit a residential care home regularly. Residents in nursing care will have recognisable nursing needs that require the attention of qualified medical staff. They will be monitored around the clock by trained nurses and medical professionals. For further guidance on how to find a care home, visit the Age UK website.

Funding for residents in care homes  

Many people have to pay something towards their care in a care home and some will have to pay for all of it. Possibilities for funding include:-

  • self-funding
  • local authority funding
  • NHS funding
  • financial support from a charity.

For further information about paying for residential care, see the Age UK website.

Elder abuse

People who are physically, emotionally or psychologically frail and dependent on others for care are most at risk of elder abuse. Abuse can occur in institutional settings, but more often it takes place in the home. Older people are often unable, frightened or embarrassed to report the presence of abuse. For more information about elder abuse, including what to do if you suspect it is taking place, see our Elder abuse fact sheet.

Caring for disabled children

Caring for a disabled child can be very difficult and many people find that they need extra help with the care that they provide. In the first instance it is advisable to arrange for a parent carers needs assessment (for further information, see above in assessments section).

Early Support Programme

The Early Support Programme provides information and resources on health, education and social care to families with disabled children. For further information, including how to contact your local council, see the government website.

Educating children with special educational needs 

Many children who need assistance with learning should be able to to have their needs met within the standard school structure. Parents can work with the school to create an individual education plan (IEP). Banardos has produced a guide  setting out how individual plans work. For further information about social inclusion in mainstream education, see the About Learning Disabilities website.

Raising teenage children

Teenagers can be a challenge. Teenager behaviour can be baffling, hurtful and often worrying. Hormone surges, body changes and peer pressure leave many teenagers feeling isolated and misunderstood. Whilst these changes are natural, parents may feel the need for extra support and advice. Family Lives offers advice on all aspects of teenage behaviour.

For further information, including advice on drugs and alcohol, communicating with teens and sex and relationships, call the Family Lives telephone helpline on 0808 800 2222 , or visit the Family Lives website.

Raising a lesbian, gay, bisexual or transgender (LGBT) child

LGBT young people can feel very isolated, in particular they may feel very anxious about ‘coming out’ and being excluded from social groups as a consequence. It is normal to have concerns and questions about how to help a young LGBT to be themselves.

Young people who are unsure of their sexuality or need assistance with coming out or accepting their sexuality can contact the Lesbian and Gay Foundation (LGF). They offer a range of services including face to face counselling, email support and a telephone helpline. For further information, see their website.

For further information and support for young people who are transgender, transsexual or cannot identify with the gender they were assigned at birth, see the Gender Trust website.

For further information about LGBT, contact the Project for Advocacy, Counselling and Education (PACE) telephone helpline on 020 7700 1323, or visit the PACE website.

Families and Friends of Lesbians and Gays (FFLAG) offer a support service that includes a telephone helpline staffed by parents who have a lesbian, gay or bisexual son or daughter. For further information call the FFLAG telephone helpline on 0845 652 0311, or see the FFLAG website.

Educational Action Challenging Homophobia (EACH) is a charity which works to help young people who have experienced discrimination owing to their sexual orientation or gender identity. For further information, contact the EACH telephone action line on 0808 1000 143, or visit the EACH website.

Trans Unite is a not for profit organisation which allows members of the transgender and non-binary communities to find a support group local to them. For further information, see the Trans Unite website.

Caring for grandchildren

If your grandchildren come into your care, for example, because of a bereavement or divorce, it will be an unsettling time for everybody. Initially, there will be the practicalities of organising who sleeps where and how to pay for food, clothing and other essentials. The following benefits may be available to grandparents who are raising their grandchildren:-

  • child benefit
  • child maintenance
  • child tax credits
  • childcare and tax credits
  • disability living allowance – child
  • early years education
  • education maintenance allowance
  • 16 to 19 bursary fund
  • guardian’s allowance.

You may also be entitled to claim other general benefits and credits. For further information, see the Grandparents Plus website.

Working age grandparents who provide care for a child under 12 can get their national insurance contributions credited, to help build up their basic state pension. For further information, see the government website.

Parents can claim additional childcare tax credits if the grandparent is/becomes a registered child minder. For further information, see the government website.

Raising bereaved grandchildren

Bereavement can be a distressing and devastating experience. Grief is a process that takes time and many reactions, for example, regression, lack of concentration and sleep problems, are normal and ordinarily they will pass with time. Help is available to support you at this difficult time. Cruse is a charity offering advice and support for people who are bereaved. For further information about their services, which include a telephone help line and face-to-face support, see the Cruse website.

Winston’s  Wish is a childhood bereavement charity offering practical support and guidance to bereaved children and their families. For further information, call Winston’s Wish telephone helpline on 08452 03 04 05, or see the Winston’s Wish website.

Raising grandchildren whose parent is in prison

According to Grandparents Plus, approximately 160,000 children in the UK are affected by the imprisonment of a parent or carer at any one time. Often, it is grandparents who will step in to look after children, in particular, when their mother is in prison.

For further information about the practicalities of looking after children whilst their parent is in prison, see the Grandparents Plus website.

For further information about all aspects of going to court and prison, and  visiting family members in prison, contact the Offenders’ families telephone helpline on 0808 808 2003, or visit the Offenders’ Families website.

Pact offers advice, care and support to prisoners’ children and families, and to prisoners themselves. For further information, see the Pact website.

Raising grandchildren whose parent is an addict

According to Mentor International, ( an international organisation working to prevent drug use across the world) there are many thousands of children and young people across the UK who are being cared for by family members. Reliable estimates suggest that around half of kinship carers are looking after children because of parental drug and alcohol problems. Mentor have published kinship care guides for people living in Scotland and England and these are free to download from their website. There is also a guide offering practical advice on talking to children about alcohol and drugs. For further information, see the Mentor International website.

Pharmacist Support’s  Health Support Programme helps to support pharmacists who experience problems with alcohol, drug, or other types of dependency. This service provides access to fully qualified addiction specialists, and all calls to the helpline are entirely confidential. Call 0808 168 5132, or for further information, visit our website.

Action on Addiction’s M-PACT programme supports young people aged 8-17 who are affected by parental substance abuse. The programme offers a ‘Whole Family Approach’, for further information, see the Action on Addiction website.

Action on Addiction have joined forces with Children of Addicted Parents (COAP) to help support children who are affected by parental substance abuse. For further information about the services they provide, including message boards and counselling, see the COAP website.

For further information about alcoholism, see our Help with alcoholism fact sheet.

For further information about drug addiction, see our Help with drug abuse fact sheet.

Adfam is a charity that provides information and support to families affected by drug and alcohol abuse. For further information, including a section devoted to grandparent carers, see the Adfam website.

Practical and emotional support

Respite care

Caring for a loved one can be both physically and emotionally draining. Taking short breaks is important. These can range from a few hours of respite, for example to go shopping, to a stay in a care home to enable the carer to go on holiday. This is often known as respite care, and many local authorities offer a variety of services to enable carers to have a break.

For further information about respite care, see our Respite care fact sheet.

A Listening Friend

If it all gets too much, you can talk to another pharmacist in confidence, Listening Friends are there to help. You can call the free-phone helpline: 0808 168 5133, leave a name and contact details and a trained volunteer pharmacist will call you back within 24 hours.

Life after caring

After what can be many years of putting the needs of others first, carers often need time to adjust to life after caring. People who suddenly have time on their hands could consider volunteering, trying out new hobbies or learning something new. For a comprehensive list of suggestions on hobbies, volunteering and further study, see our Ready for retirement fact sheet.

Other useful contacts – Caring

Carers UK

Carers UK is a charity providing information and advice about caring as well as practical and emotional support for carers.  Carers can find a carers group local to them via the help local to you section of the website and talk to other carers via an online forum. The Carers UK website has a wide range of information on issues of relevance to carers and there is also an advice line on: 0808 808 7777.

Carers Trust

The Carers Trust provides information, advice and practical support for carers including advice on money and benefits. Carers can also make contact with other carers via online forums, live chat and blogs. You can contact the enquiry and support team at support@carers.org

Carers Direct

The Carers Direct section of the NHS Choices website has a range of useful information for carers. Their helpline offers confidential information and advice for carers on: 0808 802 0202.  The helpline offers a call back service and is available in a large number of languages.

Other useful contacts – Caring for the elderly

Age UK

The Age UK website has a variety of information for carers.  There is also a general advice line on: 0800 169 6565.

Alzheimer’s Society

The Alzheimer’s Society provides information and local services to people affected by dementia. For further information, contact the Alzheimer’s Society telephone helpline on 0300 222 1122, or visit the Alzheimer’s Society website.

Elderly Accommodation Counsel (EAC)

EAC is a national charity offering advice and information to older people, their families and carers about housing and care options. For further information, contact the EAC telephone helpline on 0800 377 7070, or visit the EAC website.

Friends of the Elderly (FOTE)

FOTE provide information about other services which can support elderly people and their families and carers. For further information, visit the FOTE website.

Independent Age

Independent Age offer advice on a range of issues including home adaptations, care assessments and paying for care. For further information, contact the Independent Age telephone helpline on 0800 319 6789, or visit the Independent Age website.

Office of the Public Guardian (OPG)

The OPG  protects people in England and Wales who may not have the mental capacity to make certain decisions for themselves, such as about their health and finance. For further information, see the government website.

 Solicitors for the Elderly (SFE)

SFE is an independent, national organisation of lawyers who provide specialist legal advice for older and vulnerable people, their families and carers. For further information, see the SFE website.

Other useful contacts  

Child Maintenance Options (CMO)

CMO is a free service that provides impartial information and support about child maintenance arrangements. For further information, see the CMO website.

Coram Children’s Legal Centre (CCLC)

CCLC is a children’s legal charity. They provide free legal information, advice and representation to children and young people, their families and carers and professionals. For further information, see the CCLC website.