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How do I get help?

If you are caring for a relative or friend who is elderly or has an illness or disability you are a carer. It doesn’t matter if the person you care for is young or old; if he or she is a relative, partner, child or friend, whether they live with you or some distance away, you are still a carer. If you are providing most of the care which your friend or relative needs, you should be properly supported so that you don’t have to cope on your own. This section will give you information on how to get the help you need in caring for your relative or friend. It is arranged in three segments.

Section 1 - Community care - explains how the person you care for can get a community care assessment. It also explains your rights to a carer’s assessment.

Section 2 - Getting ready for the assessment - is a practical guide to help you, and the person you care for, prepare for your meeting with the social worker who will carryout the assessments.

 

Section 3 - After the assessment - explains what happens after the assessments, your rights, charging for services and what action you can take if you don’t agree with a decision made by social services. 

1. Community care 

What is community care?

Social services departments of local authorities (referred to in this section as ‘social services’) are responsible for arranging for support to be given to people who, due to their age, illness or disability, need help to live in the community.

If a person appears to be in need of care, social services must assess what services should be provided to meet that person’s needs. This is known as a ‘community care assessment’. If the person appears also to have health or housing needs, social services must invite the health or housing authority, whichever is relevant, to assist in the person’s assessment.

Sometimes social services will be the direct provider of help such as a home help or meals on wheels. At other times they will ‘buy in’ the services of voluntary organisations, such as Crossroads, MENCAP, or a privately run residential home, to provide care on their behalf. If you think that the person you look after needs such services, you can ask social services to carry out a community care assessment.

What about carers?

If you regularly provide a substantial amount of care for your friend or relative, you have the legal right to ask social services to carry out a carer’s assessment. The carer’s assessment should look at your ability and willingness to continue to provide care. It should take account of your circumstances, age, views, preferences and the amount of support you already have. It should not assume that you want to continue providing the same amount of care. You can ask for a carer’s assessment when the person you care for has a community care assessment. If the person you care for has already been assessed but the situation has now changed because he or she needs more help, or you are finding it difficult to manage, ask social services to carry out a reassessment (a review of his or her needs). 

You can also ask for a carer’s assessment if you are going to provide care in the future, for example, when someone leaves hospital or is planning to come to live with you. Young carers (children and young people who look after someone) can also ask for an assessment. If you are a young carer, Carers National Association can send you information.

The purpose of your assessment is to make sure that social services listen to you and offer the help you need so that you can go on caring. Social services cannot provide services to you directly as a result of your assessment. Any services will be provided to the person for whom you care. However, if a good range of services is provided as a result of their assessment, your life should become easier.

What information is available?

Social service departments in England and Wales are required to give people information about their rights. This information should include:

  • how to apply for an assessment;
  • what social services do when they have received your application;
  • what services are available, not only those provided by social services;
  • how to complain if you are not satisfied.

How to get an assessment

If you would like a carer’s assessment you should contact the social services department and ask for an appointment for a ‘community care assessment’ for the person you care for and a ‘carer’s assessment’ for yourself.

The telephone number and address of the social services department will be listed in the phone book under the name of your county council or London Borough Council. If you live in a big town you will find the details under the name of your city or metropolitan council. Alternatively you can ask your GP or district nurse to contact social services on your behalf. If possible, try to talk to the person you look after beforehand, and agree that you will ask for assessments for you both. 

Obviously he or she will be involved in the assessment procedure. If he or she refuses to have a community care assessment, you may not be offered a carer’s assessment yourself. If this happens, phone social services and speak to a social worker to explain your problems. The social worker may be able to help you resolve the difficulties between you and the person you care for.

Sample letter requesting a carer’s assessment

Below is a sample letter which you can write to social services. The instructions in brackets [] refer to the information about you and the person you care for which you will need to include in your own letter. Remember you cannot ask for a carer’s assessment on its own – it must be linked to an assessment of the needs of the person you care for, which is why you should include details of their needs as well as your own.

Make a copy of your letter so that you can refer to it in the future. Someone will contact you, probably a social worker. Call social services if you do not hear from them within two weeks.
If you need help urgently, you could add an extra sentence to explain the urgency. Alternatively, you might do better to telephone social services, explain the situation and ask for their immediate help. In emergencies, social services can provide services before carrying out a full assessment.

A Sample Letter 

                                               Your address

                                               Your telephone number

Date

Social services address 

Dear Sir/Madam

I am writing on behalf of [name and address of the person you care for]. S/he is my [mother, husband, friend etc]. I am writing to request an assessment for community care services.

[name of person] needs help because s/he is [list here the disabilities that your friend or relative has, e.g. she is 90 years old, has arthritis and is becoming frail]. The main things that s/he needs help with are [list here the problems that your friend or relative has, e.g. having a bath, cleaning, etc.].

I am his/her carer and I would also like to request a carer’s assessment under the Carers Act. The main difficulties that I am having are [list here the things that you think you need, e.g. I need a break from caring].

Could you please write to me at the above address or telephone me on [put your number here] to let me know when you will be able to carry out an assessment.

Yours faithfully

[Your name]

What will happen at these assessments?

Assessments should be as simple, speedy and informal as possible. They should be carried out in a place which is convenient for you and the person for whom you care. (In practice this usually means in your home or the home of the person you care for.) Normally one person, probably a social worker, will carry out the assessment. However, when a lot of care is needed, it may be necessary to arrange a meeting between you, the person needing care, the social worker, your GP and a nurse so that everyone can discuss how best to help. 

The assessment is the chance for you both to tell the social worker what you need and what would make life easier for you. It is important that you both take time beforehand to think about the things which you find difficult and the services which would help you. (Click here for a list of the services which might be offered.) You may both find it helpful to make notes before and during the assessment so that you don’t forget anything

Try and discuss your views with the person you care for so you can generally agree on what help you need. However, if you are unable to agree, then ask to talk to the social worker separately so that you both have the opportunity to give your points of view. The social worker must allow you the chance to speak frankly about your own feelings and difficulties during your assessment. If either you or the person you care for has difficulty communicating you should let social services know, as they have to provide appropriate assistance. 

The social worker is there to help you resolve any problems or disagreements. For example, you may want to carry on doing paid work for as long as possible. It is important that social services understand your wishes and provide services to support you. You are entitled to work if you want to.

2. Getting ready for the assessment

It can be quite hard to start thinking about what you need and to know what kind of help you would like. Here are some of the topics that are likely to be covered in the assessment, some questions to think about, and space to fill in to remind you what you want to say to the social worker. If you take some time to work through these, you will be better prepared for the ‘real thing’ and you will get more out of it.

Housing

Do you and the person you care for live together or apart? Is this arrangement satisfactory? If not, say why.

____________________________________

____________________________________

____________________________________

____________________________________

____________________________________

Does the person you care for have any difficulty moving about in the home? (For example, can s/he climb the stairs, or have a bath without help?) If special equipment would make life easier for the person you look after, then caring would be easier for you.

____________________________________

____________________________________

____________________________________

____________________________________

Health

Does the person you care for have any health problems you find hard to deal with? Describe as fully as possible:

____________________________________

____________________________________

____________________________________

____________________________________

Do you have any health problems? If so, describe them as fully as possible. For example, if you have a bad back you might be able to get lifting equipment.

____________________________________

____________________________________

____________________________________

____________________________________
Do you feel that you are getting enough sleep?

____________________________________

____________________________________

____________________________________

____________________________________

Do you feel you are suffering from stress or depression?

____________________________________

____________________________________

____________________________________

Time

How many hours a week do you care? Include the time that you spend with the person you care for and the time you do other things for them such as washing, cleaning and cooking. (List the jobs you do and how long they take you - the answer may surprise you!)

____________________________________

____________________________________

____________________________________

____________________________________

____________________________________

____________________________________

____________________________________

Do you have to help with:

  • housework?
  • shopping?
  • bathing?
  • toiletting?
  • other personal care (like dressing)?
  • keeping an eye on them?
  • dealing with money (cashing pensions etc.)?
  • laundry?

Do you have to help during the day, or night, or both?

____________________________________

____________________________________

____________________________________

____________________________________

____________________________________

Does anyone else help with these? If so, who and for how long?

____________________________________

____________________________________

____________________________________

____________________________________

____________________________________

____________________________________

Would you like some help (or some extra help) with these jobs?

____________________________________

____________________________________

____________________________________

____________________________________

If you would like some help with only one task, which one would it be?

____________________________________

____________________________________

____________________________________

If that task was taken care of, which would be the next task you would want help with? (This is to help you draw up your own list of priorities.)

____________________________________

____________________________________

____________________________________

Are there things that you find enjoyable and relaxing which you can’t do because of your caring responsibilities? For example, you may have given up a hobby or you may want to visit friends.

____________________________________

____________________________________

____________________________________

When was the last time that you had a whole day to yourself to do as you pleased?

____________________________________

____________________________________

____________________________________

____________________________________


Feelings

Do you feel that you don’t have a choice about providing care? (You  may feel that you are unable to carry on at all, or only if you reduce the amount that you do. Tell the social worker about these feelings.)

____________________________________

____________________________________

____________________________________

____________________________________
What would you like most to change about your situation?

____________________________________

____________________________________

____________________________________

____________________________________

By now you should have a clearer idea of what your needs and priorities are. Now look at what services you might want to discuss with the social worker.


Things to discuss with the social worker

Think about the range of services listed below. Would any of these help you?

  • changes to the home and equipment to help you?
  • someone to help with personal care (e.g. bathing)?
  • a meal delivered to the person you care for?
  • a few hours’ break for yourself regularly?
  • a few weeks’ break occasionally?
  • a discussion about permanent residential care?
  • counselling/talking to someone?
  • to be put in touch with carers?
  • information about what is available and their costs?
  • Put down anything else you need which is not on the list.

The services provided should be flexible and adapted to fit your needs, i.e. they should be arranged at times to suit you and the person for whom you care. You may find that you don’t want some of the services which have been offered. You are not obliged to accept them. You may decide to accept some and not others. Remember: if your situation changes and you need more help you can ask for a reassessment.

Now that you have started to look at your priorities and needs, you are better prepared for your assessment. Remember to tell the assessor what your needs are so that you can get all the help that you require. You might find it helpful to write down all your needs before the interview, and give the social worker a copy.

3. After the assessment

When social services decide what to provide they have to take into account the results of both your carer’s assessment and the community care assessment of the person you care for. They will then draw up an individual care plan for the person you care for. They should give you both a copy of this plan.

Remember that while you are entitled to your own assessment, services are provided to the person for whom you care. However, if they are provided with a good range of services this will in turn support you.

The range of services which might be offered to the person you care for could include:

  • a home help, either to do the shopping or to help with personal care;

  • a place at a day centre and transport to get there;
  • a meal at home or at a day centre;
  • help to use educational facilities (such as a college and libraries);
  • changes to the home and special equipment for the safety or convenience of the person receiving care;
  • holidays;
  • a telephone.

Social services are also responsible for arranging permanent residential and nursing home care when necessary, or when the cost of providing services is too great to support someone living at home. They can also arrange respite care – perhaps a week at a residential care home every few weeks – to give you a complete break.


Additional rights for children

If you are caring for a disabled child, you can still ask for a carer’s assessment of your own needs at the same time as your child is assessed. The services that may be provided to disabled children are almost unlimited and include:

  • giving assistance in kind or, in exceptional circumstances, in cash, e.g. a pair of shoes, or money in an emergency advice, guidance and counselling;
  • occupational, social, cultural or recreational activities such as a play group;
  • home help (which may include a laundry service);
  • transport, or help with travel to and from home so that you can use the services provided;
  • help to enable your child and the family to have a holiday.

Services may also be provided to other members of the family, as it is recognised that often this is the best way of helping the child.

Independent Living Fund

If your needs have not been fully met after the assessment, the social worker may be able to refer your case to the Independent Living Fund. This fund pays for the extra care needs of very severely disabled people. It can give regular payments to your relative in order to buy in the extra services which are needed. The Fund can only do this if:

  • the person you care for is aged between 16 and 65;
  • the person you care for is on Income Support, or has an income not much higher than Income Support after they have paid for
  • their care needs;
  • the person you care for gets the Disability Living Allowance care component at the higher rate;
  • the person you care for lives alone, or their carers cannot meet all their needs;
  • the social worker has arranged a care package which is worth at least £200 a week;
  • the total cost of their care will not exceed £500 a week;
  • the person you care for is expected to live for a further six months or more.

If you think that your relative or friend meets these conditions, it is worth asking your social worker about the Independent Living Fund.


Direct payments

In some circumstances social services can (but are not required to) give cash payments instead of services to people who have been assessed as needing community care services. This allows people to make their own arrangements for getting the services they need, although they cannot normally pay a close relative to care for them under this scheme.

Social services would need to be satisfied that the needs of the person needing care are being met through the direct payment arrangement, and that the money is being spent appropriately and cost-effectively. The person you care for must be able to manage the money, either alone or with assistance, and is responsible for how the money is spent.

Decisions on services to be provided

Both you and the person you care for should be fully involved in discussions with social services on the results of the assessments and the proposed care plan. However, following the assessments, you may be told that a particular service cannot be provided because social services cannot afford it. If you have been told this, you should bear in mind the following:

  • once a social service department has decided that a service should be provided then it must be, regardless of resources;
  • services cannot be withdrawn simply on the basis that social services have less money - they must carry out a reassessment of the person’s care needs;
  • the availability of resources is only one of the factors to be taken into account when deciding whether a service should be provided;
  • in some cases services must be provided, regardless of resources - for instance when the person cared for would be at severe physical risk if the services were not provided.

If you are unhappy about the level of services that social services decide to offer the person you care for you can make a complaint.


Will I have to pay for services?

Services to adults

Neither you nor the person you care for should be charged for the assessments. However, social services can charge for some community care services and they are under a duty to charge for long-term residential care. Accordingly, the person you care for is likely to be asked questions about his or her finances such as any earnings, pensions or savings that he or she may have, or any benefits they receive. The person you care for does not have to give this information, but if he or she doesn’t, social services are likely to assume he or she can pay the full cost.


For home care services only the person for whom the service is to be provided should be asked to pay. You, as a carer, should not be asked about your finances. For residential services, see our booklet Residential and nursing home care, which explains how charges are made.


If the person you care for is asked to pay for services, you should ask social services for details of their charging policy and an explanation of how they have calculated the charges.


There are no national guidelines on charging, which means that charges for services will vary from area to area. However, all social services must comply with the following points:

  • the charges must be ‘reasonable’;
  • social services should only charge what people can afford;
  • no one should be caused hardship, or denied access to a service they need because they cannot pay;
  • social services should take into account the person’s everyday needs, including any extra expenditure as a result of disability or ill
  • health;
  • if you can show that a charge would cause hardship, social services must consider reducing or dropping them;
  • benefit income will be taken into account, except for the Disability Living Allowance mobility component which must always be ignored.

If the person you are caring for is unhappy with the amount social services are charging for the services you should consider making a complaint (see below).

Services to children

Social services can make a ‘reasonable charge’ for services provided to disabled children and their families, except the following which must be provided free of charge:

  • advice, guidance and counselling services;
  • services to families on Income Support or Family Credit.
  • Social services can provide services free of charge if they choose.

    Any charge will be made direct to:
  • the parents of the child, or the child if he or she is over 16, or
  • the member of the child’s family receiving the service.
  • The person being charged should be means tested to ensure only a reasonable charge is made.

How do I complain?

There may be many reasons why you are unhappy with the way social services have dealt with you. The following are examples of the problems people might face:

  • a request for an assessment has been refused with no explanation;
  • there are long delays between requesting an assessment and getting one;
  • there are long delays between getting an assessment and receiving a service;
  • social services have decided not to provide a service although you have been assessed as needing it.

If you are not satisfied with anything about the community care assessment, your own assessment, the care provided, or the amount charged for the services, there are various ways in which you (and the person you care for) can complain.

They are described below.

1. Using the local authority's complaints procedure

Every local authority is required to have a procedure for dealing with complaints about social services. If the person you care for is unable to make a complaint or asks you to make a complaint, you can do it on his or her behalf. You can also make a complaint on your own behalf, for instance if you are unhappy about the way in which social services carried out your carer’s assessment.

The complaints procedure has three stages:

Stage 1 - the informal stage
This stage enables you to raise your concerns, on an informal basis, and gives social services an opportunity to try to resolve the problem. Although you can complain in person, or on the phone, it is better to write and keep a copy of the complaint. You do not have to use stage 1, so you may prefer to ask that your complaint is dealt on a formal basis which is stage 2 of the complaints procedure (see opposite). There is no set time limit for dealing with complaints at this informal stage, although most local authorities will have their own time scale, which is often about six weeks. It is worth asking how long you will have to wait for a reply when you make your complaint.
If you are not satisfied with the way the complaint is resolved, the local authority should give you an explanation of the complaints procedure and ask you to put your complaint in writing if you wish to proceed to the next stage.

Stage 2 - the formal stage
If your complaint cannot be resolved informally, or you chose not to use the informal stage, it will be dealt with formally. Your complaint must be put in writing. Social services have 28 days in which to investigate your complaint and send you a written reply. If it is not possible to respond to your complaint within this time, you should be told why there will be a delay. In any event you must receive a response within three months of making your complaint.

Carers National Association can tell you whether there is a local service which can assist you to complain. The authority has to tell you, in writing, the outcome of the ‘formal stage’. If you are making a complaint on behalf of the person you care for, he or she should be informed of the outcome of the investigation, unless social services consider that he or she is not able to understand the complaint or it would cause him or her distress. The local authority’s reply should advise you of your right to ask for the complaint to be referred to a panel for review if you feel that the problem is not resolved.

Stage 3 - the review stage
If you are not satisfied with the response to your complaint, you can request to have your complaint referred to a panel. You must put your request in writing, within 28 days of receiving the stage 2 decision. The panel, which must meet within 28 days of your request, will consist of three people, at least one of whom must be independent and who should chair it. It is the panel’s job to re-examine the previous decision. You should be given 10 days’ notice of when and where the panel will meet, and be invited to attend. You should also be told the names and status of the panel members. It is in your interest to attend if you can.

The panel will find it easier to understand your situation if they can ask you questions. You are entitled to be accompanied by another person, for instance an advice worker, who could speak on your behalf if you wish. The panel must reach a decision within 24 hours and send its recommendations (and reasons), in writing, to social services, to you and to any other person who is sufficiently involved. Social services then have 28 days to respond to the recommendations. Their response should be sent in writing to everyone who received a copy of the panel’s recommendations. The letter should explain social services’decision and the reason for it.

2. Complaint to the local ombudsman

The Ombudsman can investigate complaints against local authorities, including social services, but will only do so where there has been ‘maladministration’ (such as unreasonable delay, or failure to follow proper procedures). Generally you will need to go through the social services complaints procedures before you can make a complaint to the Local Ombudsman. However, you will need to make a complaint to the Ombudsman within 12 months of the day on which your complaint first arose.

3. Complaint to the monitoring office

Every local authority must have a Monitoring Officer who has a duty to report to the local authority on matters which may be unlawful or give rise to maladministration or injustice. Once a report has been prepared, the decision or proposal cannot be acted upon until the local authority has considered it. One way of pursuing a complaint is therefore to write to the Monitoring Officer, setting out the decision or proposal which you believe is unlawful or gives rise to maladministration or injustice, and request that the local authority reviews it.

4. Judicial review

Where social services appear to have acted unlawfully in reaching a decision, an application can be made to the High Court asking the judge to review the decision. You must get expert legal advice before taking this course of action. People on low income can get legal aid but otherwise this is a very costly process. Judicial review might be appropriate in cases where social services have refused to carry out an assessment or reach a decision, particularly if services are required urgently.

Preparing for the complaint

Write down all the things that you wish to complain about and, if possible, discuss them with the person for whom you care. Consider asking social services for a copy of your file and, if the person you care for gives permission, for a copy of his or her file as well. When writing to social services, you should state that you are asking for copies of these documents under the Access to Personal Files (Social Services) Regulations 1989. You should also mention that under these regulations you should receive this information within 40 days. Given the length of time social services have in order to comply with your request, ask for these documents as soon as possible.

Where to get help in making a complaint?

You can get help with your complaint from an advice centre like the Citizens Advice Bureau or from a disability organisation. These organisations may be able to give you details of lawyers who are able to advise on community care law.

Carers association