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Residential or nursing care
As a carer, residential or nursing care for the person you care for might be a difficult option to consider. It may feel like you are letting the person you care for down, or you are rejecting them, but it is important to remember that you can only do so much as a carer. Caring can be both physically and mentally exhausting and there are often limits to the level of care that can be provided in the home. If the person you care for is no longer able to look after themselves and you are unable to provide the care they need, for whatever reason, residential or nursing care is a sensible and realistic option. It is better to arrange the best care possible than struggle on until you reach crisis point.
This section outlines some of the main issues that arise for carers when the person they care for moves into residential care, including:
• Making the decision about what care is needed.
• How you can continue to be involved in their care.
• How your benefits are affected.
• What you can do if you are not happy with the care provided.
Making the decision
If you are considering the possibility of the person you care for moving into residential or nursing care, you should allow time to find out about all the options open to you. Ask social services for a carer’s assessment, and for an assessment (or re-assessment) of the person you care for. There may be more help you can get at home, for example increased support from social services, medical equipment in the home, adaptations to the house or more frequent short-term stays in residential care for the person you care for.
You also need to talk with the person you care for about what is best for both of you. You may find that they accept the situation more readily than you expect. There may be ways you can reassure them – and yourself – about the move. For example, is the home nearby, do you know anyone who already stays at the home, can the person you care for stay there on a trial basis first?
If the person you care for is unwilling to discuss the situation, or you are finding it hard to handle the move, it may help to talk it over with a friend, family member, another carer, your GP or social worker. There are organisations that can offer you support such as your local carers’ centre or the Relatives and Residents Association at www.relres.org.uk
The following organisations produce information about finding and funding care:
Counsel and Care at www.counselandcare.org.uk 0845 300 7585
MS Society at www.mssociety.org.uk 020 8438 0700
Alzheimer’s Society at www.alzheimers.org.uk 0845 300 0336
Practical matters
Are you still a carer: social services
When the person you care for moves into a residential care home, you may still be entitled to a carer's assessment from social services. This will be the case if the residential care is provided by social services and you are still providing 'regular and substantial' care to supplement it. Some carers find that the time they spend caring actually increases as they spend all day at the home, e.g. helping with personal tasks such as feeding and bathing, or offering company. Travelling to and from the care home does not count as time spent caring.
If you are no longer offering regular and substantial care, the professionals in charge of looking after the person you care for must still take into account your views and feelings when decisions are made (see below). It is a good idea to discuss with staff how you will be involved, and what you can expect from them, as early as possible.
Are you still a carer: employment
If you are employed and care for an adult, you have the right to request flexible working from your employer. The definition of carer in the regulations allows for relatives to care for someone who does not live with them and this could include a relative who lives in a residential or nursing home.
Guidance suggests that ‘care’ includes emotional support, keeping the cared for person company, helping with financial matters or paperwork and escorting them to appointments.
For more information about carers’ rights at work see Carers UK’s ‘Employee’s guide to work and caring’ and Help the Hospices and Working Families guide ‘Flexible working for people caring for a relative or friend at the end of life’.
Making decisions about treatment
If the person you care for has the capacity to make decisions, and they continue to do so, the fact that they live in a residential home does not affect their right to make choices about their care and treatment. If the person you care for cannot make their own decisions, or may not be able to in the future, they may be able to nominate someone to make decisions for them (by giving them Power of Attorney), or the Court of Protection can make decisions on their behalf.
For more information or advice, contact the Public Guardianship Office:
For England and Wales at www.guardianship.gov.uk 0845 330 2900
For Scotland at www.publicguardian-scotland.gov.uk 01324 678 300
For Northern Ireland at www.courtsni.gov.uk 02890 328 594
If the person you care for is at the end of their life and the expectation is that their condition will deteriorate and they may lose capacity to make decisions about their care, they should be offered Advance Care Planning. This is a process used by all professionals who work with people at the end of their life, to help them understand their illness, and make decisions about and prepare for the end of life.
Through Advance Care Planning, the person you care for can make an advance statement or decision about the treatment they wish or do not wish to receive. They can instead (or also) nominate someone to have Lasting Power of Attorney over their health and welfare decisions.
For more information about Advance Care Planning, contact The Patients Association on 0845 608 4455.
Without having a Lasting Power of Attorney for the person you care for, you will not be able to make decisions about their care or treatment if they are unable to do so themselves. The professionals involved should still ask about your opinions and wishes, but you cannot make decisions on their behalf, even if you are their next of kin.
If none of the above measures are in place, decisions about the care and treatment offered to the person you care for will be made in their ‘best interest’ by medical professionals.
Charging
Unless care is provided by the NHS, local authorities or individual care homes can charge for their services. In order to do this, they must carry out a financial assessment to determine how much they can charge.
Local authorities must follow statutory guidelines for charging (which includes the treatment of any property owned by the person in care). Paying for care is a complex issue and it is important to seek specialist advice.
For more information, call Counsel and Care’s helpline on 0845 300 7585 or go to www.counselandcare.org.uk
What happens to my benefits?
If care is provided by social services, the care component of Disability Living Allowance /Attendance Allowance will stop being paid to the person you care for once they have lived in the care home for 28 days. The mobility component of DLA can continue to be paid. If care is provided by the NHS, the care and mobility components of Disability Living Allowance / Attendance Allowance will stop after 28 days.
Once the person you care for stops getting the care component of Disability Living Allowance/Attendance Allowance, your entitlement to Carer's Allowance will also stop (unless you are also caring for another person, and meet the criteria for Carer's Allowance as their carer). If you are receiving any means-tested benefits e.g. Income Support or Pension Credit, the carer premium or addition is paid for an extra eight weeks after your Carer's Allowance stops.
If the person you care for is funding their own care, all their benefits – including Disability Living Allowance/Attendance Allowance – will continue. Your entitlement to Carer's Allowance may continue if you are still caring for them for 35 hours a week or more. Whether you claim benefits as a couple is also affected if your spouse or partner moves into residential care. You should seek advice.
For more information about benefits you may be able to claim contact CarersLine on 0808 808 7777.
Concerns or complaints about the care home
If you are not happy with the care home, in the first instance speak to the manager of the service. All care homes must have a complaints procedure.
If a referral to the home was made by social services, you should also speak to the social worker involved in the care package. All local authorities have a complaints procedure – this will offer three stages of complaint. If you have gone through all stages of the complaints procedure and you are still not happy, you may be able to take your case to the Local Government Ombudsman.
To find out about care home standards or to make a further complaint about a service, you can contact the following organisations:
• In England, the Commission for Social Care Inspection at www.csci.org.uk 0845 015 0120
• In Scotland, the Scottish Commission for the Regulation of Care at www.carecommission.com 01382 207 100
• In Wales, the Care Standards Inspectorate for Wales at www.csiw.wales.gov.uk 01443 848 450
• In Northern Ireland, the Department of Health for Northern Ireland at www.dhsspsni.gov.uk 02890 520500
If the service is provided by the NHS, ask your local health authority for a copy of their complaints procedure. If, at the end of the complaints procedure, you are still not happy, you may be able to take your case to the Health Service Ombudsman.
Hospice care
If the person you care for is nearing the end of their life, hospice care may be the most appropriate help for them.
Hospice care is for those whose illness may no longer be curable. Services include pain control, symptom relief, skilled nursing care, counselling, complementary therapies, spiritual/religious support, creative activities, physiotherapy and bereavement support. Hospice care is provided in people’s homes and through day care facilities, as well as via inpatient units when people are not able or do not wish to stay at home.
People are usually referred to a hospice by their GP, hospital doctor or district nurse. Hospices can work closely with GPs, district nurses and others to deliver the care needed.
The kind of care given in hospices is also known as palliative care and some palliative care is provided in hospitals and other settings. Hospice or palliative care is given free of charge.
For more information about hospice care, contact Hospice Information on 0870 903 3 903 (calls charged at national rate) or www.hospiceinformation.info
