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There are a number of people and services which may help you when you are caring for someone with advanced cancer at home.
A social worker (now sometimes called a care manager) has responsibility for assessing what practical and social help you, and the person with advanced cancer, need. If you don’t already have a social worker, the GP or a nurse involved in the care of your relative or friend can arrange a referral. Or you could contact the local social services department. You’ll find their number in the phone book under the name of your local authority.
Once the social worker has done the community care assessment, the local authority will decide whether or not they will provide or arrange the services that are needed. Each local authority has its own eligibility criteria, so the services that are provided will vary from area to area.
If the local authority agrees that your needs are high, it has a duty to provide services to meet those needs. Services that can be provided by social services or arranged to be given by other organisations, such as charities, include:
Some services will be paid for by the NHS, so they will be free of charge. In other cases, social services will do a financial assessment to calculate whether you have to make any financial contribution.
If you’re looking after someone on a regular and substantial basis you also have a right to a carer’s assessment. This can be an opportunity to discuss with social services any help you need with caring, as well as what help you might need to keep yourself healthy, and to balance caring with your life, work and family commitments. You can get more information about carer’s assessments on the Carers UK| website.
Your social worker will stay in touch with you once the various services have been set up, to check that the arrangements are working and that your needs haven’t changed.
As well as arranging services to meet your needs, many social workers are trained in counselling skills and can offer you emotional support.
If you have been assessed as having a need for social services, you may be entitled to get direct payments from your local authority. This means that you are given payments to organise care services yourself, rather than the local social services organising and paying for them for you. You can get information about direct payments from the NHS Choices|, from direct.gov.uk| or from your local council.
There are different ways you can get help at home for your relative or friend. Home care workers who provide this support have differing roles depending on what they do.
Care assistants usually provide help with things like housework and shopping.
Domiciliary care workers/personal care assistants usually provide help with tasks such as washing and dressing people, although they may also help out with housework and shopping if asked.
In many areas, home care is now mainly concerned with personal care tasks. If you only need help with the housework and shopping, it may be provided by social services through an agency, or you may have to make independent arrangements.
You may be asked to make a contribution towards the cost of this kind of help, if you can.
If you can afford it, you can get private domestic help by contacting a cleaning agency, or by putting an advertisement in a local paper or shop window. If you organise domestic help yourself, make sure you check the person’s references before employing them.
If there is no local service, Macmillan will sometimes give grants| to cover the cost of a private home-help.
A care attendant is a trained person who can come into your home and give a range of help including light housework, help with washing and dressing, sitting with the person you are caring for, or simply chatting to both of you. In some cases, a care attendant can stay overnight, letting you sleep undisturbed.
Care attendant schemes are run by voluntary organisations, health services, social services or a combination of these.
You may have to pay for a care attendant if you can afford it.
To find out more about having a care attendant, ask the GP, district nurse or social worker. You could also contact Crossroads, a national organisation that runs care attendant schemes. In some areas, there is a waiting list for getting help from a care attendant, so it’s worth asking as soon as you think you might need one.
If you are out at work in the day and the person you are caring for has difficulty preparing a meal on their own, it may be possible for them to have ready-meals provided at home - often known as meals on wheels. These may be provided by a commercial organisation or your local authority. You’ll probably have to pay for this service.
It’s likely that you’ll be offered frozen meals that can be put in the freezer to eat later, instead of hot meals. Hot meals are usually only delivered every day if your relative or friend can’t manage the frozen meals service. You may also be able to borrow equipment to reheat the meals and a small freezer if you need it.
Your social worker can arrange meals on wheels.
A range of meals is usually available. If the person you are looking after has particular cultural or religious dietary needs - for example if they require a kosher or vegetarian meal, or a very soft diet, this can usually be provided.
If you have to wash a lot of bed linen, the social services department may be able to help by providing a laundry service, or you may be able to get a grant for laundry charges. Ask the district nurse, GP or social worker about this.
Some areas have a ‘good neighbour scheme’. The schemes can organise help from someone living locally every so often; for example, shopping, providing company, or offering transport. These schemes are usually run by the social services or local community organisations. Some are only available to people living alone. Look for ‘Council for Voluntary Service’ or ‘Volunteer Bureau’ in the phone book or online.
For answers, support or just a chat, call the Macmillan Support Line free (Monday to Friday, 9am-8pm)
If you have any questions about cancer, need support or just want someone to talk to, ask Macmillan.