Liverpool Clinical Business Unit. Carers Information Guide

Liverpool Clinical Business Unit Carers’ Information Guide Contact details (for you to fill in) Care co coordinator………………………………………………. Team/service p...
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Liverpool Clinical Business Unit Carers’ Information Guide

Contact details (for you to fill in) Care co coordinator………………………………………………. Team/service providing care………………………………….. Consultant/other professional overseeing care…………… Named nurse (if inpatient)……………………………………….

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Emergency Contacts The following teams can be contacted 24 hours a day if you have serious concerns about the wellbeing of the person you care for. Liverpool Care Line Emergency duty team is part of Liverpool City Council and is available to provide a social care response out of hours in an emergency, it can be accessed by professionals. Available 24/7 contact centre 0151 233 3800

NHS Direct For health advice and reassurance health professionals are available here online at http://www.nhsdirect.nhs.uk/ and on the phone 24 hours a day on 0845 4647.

The Samaritans Tel: 08457 909090 Textphone 0845 909192 The Samaritans offer a 24 hour confidential telephone helpline. You can also contact them via e-mail at [email protected]

Police 101 You can telephone your local police station for general enquiries or non urgent situations on the new telephone number 101. For all urgent or emergency situations please dial 999.

If you require a copy of this document in translation please contact ‫  ً س  ب‬،‫ا ا"  ز  ٔ   ٔ ا   ه‬ :‫ەب ەب دنەو ەپ تەمحەزێب اوەئ وار ەموجرەت ەب تێوەد تەوارسوون مەل كە ەخسون رەگەئ‬ Pokiaľ budete potrebovať kópiu tohto dokumentu v preklade, prosím, aby ste ma kontaktoval/la. Haddii aad u baahantahay dokumentigan oo luuqadaada lagu soo turjumay, fadlan la xiriir Margaret Brown Equality & Human Rights & Service User Carer Lead Tel: 0151 250 5045

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Our Vision Liverpool Clinical Business Unit provides high quality, accessible services which reduce distress, maximise choice and promote wellbeing and recovery in accordance with the human rights principles of Fairness, Respect, Equality, Dignity and Autonomy.

All the artwork depicted in this pack was created by Liverpool Service Users and Carers in our Sudley House Project, working with TAG and on the inpatient unit working with Tate Liverpool

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What is in this information pack?

Contents

This pack is designed to give carers of Liverpool mental health service users an overview of what to expect from Liverpool mental health services and what information and support is available to you.

Are you a carer? Young carers

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Carers assessment

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Contingency plans Carer support in an emergency

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Caring for someone with a mental health problem can be a very rewarding experience but there are times when it can also be lonely and stressful. We recognise and value carers as equal partners in providing the care and support people need on their road to recovery.

Confidentiality and information sharing 6 Advanced Statements Involvement in service user’s care plan Care co ordination (including Care Programme Approach CPA) Single Assessment Process (SAP) Capacity to make decisions Carers’ rights under the Mental Health Act

However, this pack is not intended to replace a face to face meeting and conversation with a member of staff. Please remember that our members of staff are always willing to meet carers and discuss any concerns you may have so don’t hesitate to ask for an appointment.

Finance Welfare benefits 9 Department of Health and Social Care grant Direct payments

Please note there are several websites listed in the pack including the Trust’s that have a large amount of information. If you do not have access to a computer your local library will have one. If you have any queries about this guide and would like a copy please contact Margaret Brown, Service User & Carer Lead on 0151 250 5245

Diagnosis information

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Treatments

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Medication and side effects Books on prescription Physical health checks

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Your own health and wellbeing 16 You need to look after your own wellbeing Your mental and physical health Right to a life outside of caring

You can also get a copy of the separate Liverpool City Council carers information pack by contacting the Carers Support Officer on 0151 233 1127.

Training and employment Time off from caring Community/peer group support Volunteering

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Complaints, comments and suggestion 20

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Helpful websites

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Glossary of terms/who’s who?

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Frequently Asked Questions

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Under the Carers (recognition and services) Act 1995 you have a right to an assessment of your own needs. It is not an assessment of your ability to be a carer but whether you need any support to help you care for the person and maintain your life outside of caring. During a carers assessment you will have an opportunity to discuss the support available and agree a care plan for yourself that addresses:

Are you a carer? The term ‘carer’ should not be confused with a care-worker or care assistant who has a contract of employment to provide care to someone. A carer is someone who looks after a relative, partner or friend with a disability or an illness which means they cannot manage without help. You may live with the person you care for or they might live elsewhere. You may be a full-time carer or juggling a job and caring for someone. There are many ways of getting support for you.

● ● ● ● ● ● ● ●

Young carers A young carer is a child or young person under 18 who takes care of an adult family member who needs support because of a long term illness or disability.



Young carers often do not think of themselves as carers or be recognized as such by other people like friends, teachers, doctors and other family members.

practical support emotional support information needs time off from caring wellbeing leisure needs welfare benefits support to start or maintain training or work contingency (backup) plans.

Once the carer’s assessment has been completed you might be entitled to a carers grant. You are entitled to a carer’s assessment even if the person you are caring for does not want to receive services. Carer’s assessments are available in partnership with the service user or separate from them. Research has shown that carers prefer an assessment of their own needs to take place separately and away from the service user and therefore we can offer an appointment at your home or at a mental health centre. Discreetly offering a separate assessment can be very helpful and often results in a more relaxed, frank discussion.

However, young carers are entitled to the same help, support and information as any other carer. They are also entitled to a carer’s assessment. This is not a test of how good you are at caring; instead it can help to sort out what help you may get. The worker (who is called the CPA care co-coordinator) will be trying to help you and your family (see below). Mental health staff may also put a young carer in touch with Barnardo’s Action with Young Carers Project.

If you haven’t had a carer’s assessment you need to complete a self-assessment which you can do online at: www.liverpool.gov.uk/carersassessment

Carer’s assessment A carer’s assessment is available to carers who provide, or are intending to provide, regular and substantial care to a relative, partner or friend.

You can contact your local community mental health team (CMHT) or Care Line on 0151 233 3800.

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If you are a young carer you can also speak to someone at Barnardo’s by calling 0151 708 7323.

particularly with carers, can be sensitive in relation to confidentiality. Concern for confidentiality can mean that staff are not always free to share service user information with carers. Professionals can face difficulties with ethical and legal obligations (professional codes of conduct and a duty of confidentiality to service users) and consent (agreement from the service user to disclose information to their carer). They will however always listen to your concerns and negotiate sensitively with the service user and yourself to encourage full sharing of information so that you are best equipped to carry on in the caring role.

Contingency plans Contingency plans are sometimes referred to as backup plans. A carer’s contingency plan allows Liverpool services to respond more effectively. For example, a carer might experience an emergency when they are unable to support the person they care for. You will be asked if you wish to develop a contingency plan during the carer’s assessment, which will be kept confidential.

Liverpool CBU encourages staff to discuss issues of confidentiality with the service user at an early stage so that they understand, whilst they are well, the benefits of keeping you involved and informed. Agreement about confidentiality is recorded and updated in the service user’s records along with the use of advanced directives.

The contingency plan has details of support provided to the service user such as: •

a contact name and number of someone who is willing to help in an emergency - such as a relative or friend



details of the support provided for the service user



whether there are any access problems with the service user’s accommodation.

Confidentiality sharing

and

Service users are actively encouraged to involve their carers in their care planning and treatment.

information

Some of the information below has been summarised from ‘Carers and confidentiality in mental health. Issues involved in informationsharing’, a leaflet produced by Partners in Care (see helpful websites page). Staff members develop a therapeutic relationship with service users. It may be helpful to understand, that whilst the professionals may wish to keep you fully informed of the service user’s care, they can only do this with the service user’s agreement and consent. Given that the person has mental health problems, information sharing, 6

Advanced Statements and Advanced Decisions

Care co ordination including Care Programme Approach (CPA)

An Advanced Statement is a document which service users can use to give instructions and express their wishes to staff about their treatment and care. It is a way for service users to put on record when they are well, how they would like their care and treatment to be given if they ever lose capacity to make their own choices.

All service users will have a care coordinator, who is the person who should be contacted if you have queries about the services being provided by Liverpool CBU. With the service user’s agreement, carers should be involved at every stage of the care planning process – from needs agreement, to agreeing the care plan, to review of the care plan.

An Advanced Statement is not legally binding but health and social care practitioners must seriously consider any such request and give good reasons to justify circumstances where they feel it is not in the person’s best interest to comply. Service users are encouraged to share this document with their carers.

From October 2008, mental health trusts have been asked by the government to use the Care Programme Approach only for people with mental health problems with the most complex needs. All others will still have a care co coordinator who can be contacted, but the name for this will be Standard Care, not CPA. Whatever type of care co-ordination is used the quality of the care provided will be the same with the aim of providing well organised, effective services in every case.

An Advanced Decision confirms that a service user is refusing treatment for named conditions. This is legally binding in all cases unless the treatment is authorised under the Mental Health Act 1983. If the treatment to be refused is life-saving treatment then this must be in writing, signed and witnessed. It must include confirmation that the person understands that such refusal may result in their death. Note that in an Advanced Decision a person cannot ask for alternative treatments (i.e. it is specific to the refusal of treatment only).

More information is available from Department of Health at www.dh.gov.uk

Involvement in the service user’s care plan All service users are entitled to a written care plan. This may be as simple as a letter setting out the agreed actions to meet the service user’s needs or a detailed form including information about the needs of the service user, support required and who will provide it. As a carer you should be kept up-to-date and involved in the care plan, as long as the service user is in agreement.

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the

Single Assessment Process (SAP)

As a carer you will have a number of important legal rights if you are defined as the ’nearest relative’ under the MHA 1983.

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applies to mental health services for older people

You have the right to:

The Single Assessment Process (SAP) ensures that health and social care services work together and treat service users as individuals. It recognizes the need for integrated health and social care services centred on the service user. SAP enables the service user to make choices about their care.



Before SAP, health and social care services worked separately and often the service user would have to give the same information to each organisation. Duplication is reduced with health and social care organisations working together.

Ask an approved mental health professional (a social worker or other professional approved by the local social services authority) to assess your relative for compulsory admission to a psychiatric hospital Apply for your relative to be compulsorily admitted to a psychiatric hospital. This application must be accompanied by (in most cases) two medical recommendations. At least one of these must be a psychiatrist and one (such as their GP) should have had prior professional acquaintance with your relative. You can also ask for an approved mental health professional to support you in making the application

Capacity to make decisions There is a Mental Health Capacity Act which clarifies legal aspects of decision making. If you want to know more contact: The Office of the Public Guardian, Archway Tower, 2 Junction Road, London N19 5SZ, phone 0845 339 2900, email [email protected]

Carer’s rights under the Mental Health Act 1983 What is the Mental Health Act? The Mental Health Act 1983 provides the legislation by which people who have a mental health disorder can be detained in hospital and have that disorder assessed or treated against their wishes. The Mental Health Act has lots of sections related to the different circumstances under which a person can be detained. This is why a compulsory admission is sometimes known as being ‘sectioned’.

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Refuse consent for your relative to be compulsorily admitted to hospital under Section 3 (Admission for Treatment)



Request the discharge of your relative if they are compulsorily detained in a psychiatric hospital



Request support from an Independent Mental Health Advocate (IMHA) either for



you and/or your relative if they are detained under the Mental Health Act 1983

include help with shopping, cleaning, and generally keeping an eye on someone.

Apply to the Mental Health Tribunal and/or to the Trust’s hospital managers to appeal against your relative’s detention.

There is an earnings threshold for those wanting to apply as well as other criteria (e.g. you must be over 16 years old). The person you care for must be in receipt of attendance allowance or on the middle or higher rate care component of disability living allowance. For more information visit your local Citizens Advice Bureau, or call 0844 848 7700. Liverpool Carers Centre also holds a weekly Benefits Surgery, phone 0151 705 2307 for an appointment.

If you need any information about the Mental Health Act (MHA) 1983 please get in touch with your local CMHT who will be able to provide contact details for a MHA administrator. *A nearest relative is defined by law as any of the following:

Disability Living Allowance (DLA) • • • • • • • • •

husband/wife/civil partner/ cohabitee for more than six months eldest child eldest parent eldest sibling eldest grandparent eldest grandchild eldest uncle/aunt eldest nephew/niece someone with whom the service user ordinarily resides and has done so for not less than five years.

This allowance is available to both adults and children who need help looking after themselves and who find it difficult to work or get around due to a disability. It is divided into two parts: a carer component for help with a person’s care needs and a mobility component for help with walking difficulties. DLA is not a means tested benefit and the first claim must be made before the claimant’s 65th birthday.

Attendance Allowance

If your relationship with the person you care for is included in the above list and you would normally reside with or care for this person then you will be deemed ‘nearest relative’, having preference over other relatives.

This allowance is only paid to people aged 65 and over in need of a lot of assistance with personal care. It is not a means tested benefit. There are two rates, the higher of which is paid to someone who needs attention both day and night.

Staff at the hospital will be able to help you understand whether you are the legal nearest relative to the person you care for.

Carers Allowance, Disability Living Allowance and Attendance Allowance

Finance

You can apply for these allowances or obtain the necessary forms by phoning the benefit enquiry line on 0800 882 200 or from your local Jobcentre Plus, or online at www.dwp.gov.uk.

Welfare Benefits Carers allowance is the main state benefit for some carers. It is available to carers who meet a set of criteria and who regularly look after someone else. The care you provide does not have to be nursing or personal care. It can 9

Employment and Support Allowance (ESA)

Other sources of advice on benefits Citizens Advice Bureau - 0844 848 7700 (local phone numbers are available in yellow pages).

Employment and support allowance (ESA) is a new benefit for people who are unable to work due to an illness or a disability. It replaces incapacity benefit and income support for new claims made after 27 October 2008. All claims made before that date remain the same.

Liverpool Carers Centre Benefits Surgery - to make an appointment phone 0151 705 2307 www.direct.gov.uk

ESA is a contributory benefit like incapacity benefit, paid on the basis of your national insurance contributions and is means tested i.e. affected by income or savings in the same way Income Support was. ESA is paid at two different rates: a lower rate during a 13 week assessment period then at one of two higher rates depending on whether you are placed in the work related activity group or the support group. For more information or to claim, contact your Jobcentre Plus or the Department for Work and Pensions at www.dwp.gov.uk

Housing and Council Tax Benefits Department of Health and Social Care Grant

These benefits offer help with paying rent and council tax for people with a low income. Council tax reductions can also be obtained if someone in the household is ‘severely mentally impaired’ or if the house has been adapted specifically for use by a disabled person or if someone lives alone. Contact Liverpool City Council for more information www.liverpool.gov.uk

Home (HRP)

Responsibilities

Carers Grant Limited funds are available for payments to help carers who are under continuous pressure whose needs are not easily met through current services. This tends to be a one off payment for something that will make a real difference, e.g. driving lessons. It is subject to the carer’s assessment, the carer meeting the criteria and the availability of funds.

Protection

If someone is not working and therefore not paying national insurance contributions because of caring responsibilities they can protect some of their entitlement to state pension by registering each year for HRP. This should happen automatically if a carer is receiving carer’s allowance (or child benefit); otherwise you can notify your local Jobcentre Plus.

Direct Payments Direct payments are cash payments made by the local authority to service users, who have been assessed as needing help and support but choose to have the money to organise or arrange the services themselves. Direct 10

payments help service users who want to manage their own support to improve their quality of life and are an alternative to the local authority arranged services.

• • • • •

Direct payments are given to meet social care needs. To be eligible for a social care service, service users must meet the ‘Fair Access to Care’ criteria. To find out if a service user is eligible they will need an assessment (usually) by a care coordinator. When a service user is considering using a direct payment they need to remember they must be willing and able to manage the direct payment by themselves or with help.

• •

loss of self-confidence and self-esteem guilt and worthlessness feelings loss of, or increase in appetite irritability or impatience withdrawal and finding no pleasure in life or what they usually enjoy physical aches and pains with no physical cause thinking/talking about suicide.

If the feelings are interfering with someone’s everyday life and don’t go away after a couple of weeks, or if they come back over and over again, it may be a sign that a person is depressed and may need professional help.

Anxiety Anxiety is a normal feeling which we can all relate to in threatening or difficult situations. Short term stress or anxiety can be useful as it can make us more alert and enhance our performance. Anxiety can however have a negative effect on a person’s health both on their mind and body and can influence how a person thinks, feels and behaves and impact on a person’s day to day life. You may notice the person you care for experiences symptoms which include: • • •

Diagnosis Information Depression

• • • •

Depression is extremely common and most people will experience some form of depression during their life time, perhaps after a major life change or bereavement. You may notice that the person you care for experiences symptoms which include: • • • •

• •

tiredness and lack of energy change in their sleeping pattern unhappiness most of the time concentration problems and difficulties with decision making

feeling the worst is going to happen appearing unusually worried or fearful avoiding certain situations (e.g. never leaving the house) irritability and inability to relax increased muscular tension heightened alertness loss of confidence and a desire to seek reassurance from others difficulty falling (or staying) asleep at night headaches/migraines.

Sometimes anxiety can take the form of a panic attack. Panic attacks may appear out of the blue and can be extremely frightening. They can make a person feel out of control and experience chest pains and palpitations. 11

Bipolar Disorder (Manic Depression) •

Bipolar disorder or manic depression is a mood disorder. Someone diagnosed as bipolar may swing from moods of depression to periods of over active excited behaviour known as mania. Depending on the individual, there may be stable times between highs and lows. As a carer you may notice the following symptoms during a manic phase including:





● increased energy, hyperactivity, uninhibited and reckless behaviour ● inability or unwillingness to sleep ● talking very rapidly – other people may find it difficult to understand ● heightened sense of their own importance and grandiose schemes and ideas ● reckless money spending ● on the positive side, people may be very creative during a manic phase and feel it is a valuable experience.

another and often making little sense to others hallucinations - hearing, seeing, feeling or smelling something which others do not hearing voices is the most common and these can often be critical and unfriendly delusions - believing something that others don’t share, e.g. believing that they are being followed by a secret agent.

Psychosis

(Symptoms for depression can be found in the depression section above).

Psychosis describes conditions which affect the mind, where there has been some loss of contact with reality. Some people may only have one psychotic episode and make a full recovery, never experiencing another episode. For others it is a longer process.

Schizophrenia Schizophrenia affects thinking, feeling and behaviour. When someone becomes unwell with schizophrenia they are likely to show a change in their behaviour and their ability to perform everyday tasks and activities. They may be confused, anxious, suspicious of other people and reluctant to believe they need help.

Someone with psychosis may have symptoms including: • hallucinations - hearing, seeing, feeling or smelling something which other people do not • believing something that others don’t share (delusions) which may make the person feel they are being controlled • confused thinking - thoughts and sentences may become confused and unclear and may not make sense

As a carer you may find that someone with schizophrenia experiences the following symptoms: •



psychosis - losing contact with reality and having severe disturbances of thought and emotion confused thinking - finding it hard to concentrate, drifting from one idea to 12

will have withdrawal symptoms if they do not use the substance. Substance misuse and dependence can be associated with mental illness. For more information see: www.rethink.org.uk/dualdiagnosis

• mood swings - unusually excited or depressed • changes in behavior, e.g. extremely active or lethargic, talking to themselves, avoiding people, becoming aggressive or upset.

Personality disorders As a carer you may notice that the person: Personality disorder occurs in someone whose personality, or group of characteristics, may cause regular and long term problems in the way they cope with their life and interact with other people. Someone with a personality disorder may think, feel and behave in a rigid way and will have a more limited range of emotions with which they respond to every day life.

• prioritises the substance over other activities • is angry if confronted about their substance use • may be tired, irritable and look unwell • is less interested in everyday things • is secretive and evasive • is anxious, depressed or shows symptoms of another mental illness • avoids withdrawal of symptoms by further substance use.

Someone with personality disorder may find it difficult to: • • • •

make or keep relationships work effectively with others behave in a socially acceptable way control their feelings or behavior.

For more information about caring for someone affected by drug or alcohol misuse contact Mersey Care Addiction Services on 0151 471 7726 or see www.talktofrank.com

Dementia Alzheimer’s disease is the most common form of dementia. It is a progressive disease which affects the function of the brain and over time symptoms become more severe. Someone in the early stages of dementia may experience: • forgetfulness affecting their daily living forgetting names of people, places, appointments and recent events • problems with common tasks • mood swings • loss of interest in hobbies • loss of interest in hygiene and personal appearance • anxiety about loss of memory.

Alcohol and drug addiction Substance misuse harms a person’s health. Dependence occurs when there is physical and/or psychological addiction and the person

More information is available on a variety of diagnoses on the Partners in Care website, 13

and the national Mind website www.mind.org.uk

discussion boards on websites such as carers-uk.org and speak to your GP and other health professionals that you may know. Discuss situations with your peer group.

Tips for dealing with difficult behaviour

In dangerous/violent situations be prepared to phone the police.

The following tips have been adapted from Rethink and the Carers UK website. For more tips visit www.rethink.org or www.carersuk.org

Treatments

Get to know the signs of rising tension. These could be rocking, stuttering, colouring of the face, pacing, hand-wringing.

Intervention The first step a person needs to take is to talk to their GP about the symptoms they are experiencing. There are various interventions a GP could offer and the choice will depend on factors including the severity of the symptoms, what is available and personal preference.

Let everybody win. If you can defuse a situation you have won, if your loved one has not lost face and has kept their pride, they have won too. Walk, don’t run. Apply this in many situations, e.g. lower your voice, move slowly, and avoid sudden movements.

These include: Counselling - short or long term

Count to ten. As you do this, check your mood, assess the situation, decide on a first course of action, confirm it to yourself and then do it. Once you get someone talking, let them let off steam, don’t try to stop them.

Talking therapy enables a person to express their feelings, gain a greater level of understanding and self awareness empowering them to find solutions to their problems and strategies for coping.

Accept that your life has changed at least for as long as your loved one is ill. If a problem develops, be prepared to stop everything, ignore a deadline or be late for something.

Cognitive behavioural therapy (CBT) CBT encourages a person to develop positive ways of thinking and to construct strategies for managing. Computer packages are also available for self help CBT. Speak to your GP for more information.

Know how to call for help in an emergency. Keep important numbers handy, such as the ward or CMHT number next to your phone.

Exercise Provided a person has checked with their GP, general advice is to take part in some sort of physical activity for 20 minutes a day. Going to the gym, running, swimming, dancing, cycling and brisk walking can stimulate chemicals in the brain called endorphins, which can

Deal with stress. Speak to family and friends, use carer’s 14

enhance a person’s mood and help them to feel better.

more information please contact Addiction Services on 0151 471 7726.

Alternative and complementary therapies

Medication and side effects

Treatments such as yoga and massage can help a person to relax and give a sense of general wellbeing.

Medications change all the time and we therefore encourage you to look on the internet to ensure you are getting the most up to date information. Information is available on the following websites:

Self help groups Meeting and sharing similar experiences with other people, expressing feelings, developing and learning new coping strategies and finding solutions to problems.

www.rcpsych.ac.uk The Royal College of Psychiatrists website. Under the mental health information page, detailed information is available about diagnoses and medication. There are also leaflets specifically for carers.

Mersey Care’s website www.merseycare.nhs.uk also has a variety of self help leaflets which are free to download. Healthy living

www.choiceandmedication.org.uk Information for service users, carers and professionals about mental health conditions, treatments, medicines and side effects.

Avoiding stimulants, such as cigarettes, alcohol and caffeine, and eating a healthy diet can make a difference to a person’s ability to cope.

www.cks.library.nhs.uk Clinical knowledge summaries are a reliable source of evidence based information and practical ‘know how’ about common conditions.

Community care services Care services are arranged or provided by the local authority to people who have been assessed as having care needs. Community care services enable someone to carry on living in their home and keep as much independence as possible as long as it is safe to do so. Some examples are home care, which can provide practical help within the home, day care, which may involve the service user visiting a day centre and sitting services, so that a carer can leave the house for a short period, e.g. to do shopping. Substance misuse

www.nice.org.uk An independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health.

Treatments for substance misuse range from controlling consumption of alcohol or drugs to detox and giving them up entirely. Psychological/ psychosocial therapy, counselling and peer support is also used. For

www.medicines.org.uk Medicine guides are available through this website. These are a new

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source of information for members of the public who are looking for information about individual medicines that is up-to-date, reliable and understandable.

• • • • • • • • • • • • • • • • •

Books on Prescription Books on prescription is an additional option for people with common mental health problems and can also be useful for their carers. The GP or another health professional can prescribe a self help book on a range of topics which can be borrowed from the local public library.

Physical health checks If the person you care for is taking antipsychotic medication, it is important that they have regular physical health checks (at least once a year or more if advised). This is because of the risks of side effects that may occur. The service user should have the following checks.



ask for a carers assessment talk to someone express your emotions seek practical help join a support/self help group make time for yourself learn to say ‘no’ focus on the positive aspects of your life enjoy a healthy diet – don’t skip meals find time to rest get enough sleep have fun find an exercise you enjoy learn to relax try out alternative therapies, e.g. yoga keep contact numbers near your phone follow up on your own health needs ask for help if your caring role is affecting your ability to start/maintain employment.

Your mental and physical health Ask for a carer’s assessment. Remember you are not alone. It can be reassuring to talk to other carers and discover that your feelings are similar to others in your situation. Get help from your friends and family, local carers groups and speak to your GP. Also ensure that you watch your stress levels. It is easier said than done but it is important for you to be able to relax as not being able to do so can have long term detrimental effects on your health.

Blood tests to look at: • glucose levels, an indicator of diabetes • Lipid levels, an indicator of cholesterol (high cholesterol increases the risk of heart disease and stroke) • Weight - putting on too much weight, a side effect of many antipsychotics, can increase the risk of diabetes and heart disease • blood pressure - high blood pressure may also contribute to the development of heart disease.

Right to a life outside of caring Carers who provide regular and substantial care are entitled to a carer’s assessment. This is an opportunity for carers to discuss with staff the effect that caring has on their daily lives. Staff carrying out these assessments have new duties to support carers who express a wish to start learning or working, or who are having problems maintaining paid work. This is because carers as a group suffer many common disadvantages such as: lack of time, flexibility, money and personal energy.

Recommended physical health checks may differ for other medicines used in psychiatry and information about these can be obtained from your consultant or GP.

Your own health and wellbeing You need to look after your own wellbeing. 16

Opportunities to find time for themselves, develop and pursue their goals and aspirations often have to be delayed, abandoned or changed as they balance the needs of the person they are caring for with the demands of their caring role.

The National Career Service is a national service for people wanting information and advice about courses, learning and work. Advisers will either provide you with the information and advice you need over the telephone or face to face. They can also advise on constructing a Curriculum Vitae (CV), interview techniques and guidance on job applications and career changes. The National Career Service works with a network of providers to supply the service across the country. Services can be accessed by phoning 0800 100 900 (please say you are a carer – there is a special service for carers in recognition of the disadvantages carers might have experienced).

Many carers have had to give up their jobs, reduce their working hours or have been unable to commit to a training course, whilst caring.

Other training opportunities If you are seeking further training, more information is available about training, education and guidance from: • Learn Direct - advice for adults about courses and job profiles/training. Telephone 0800 101 900, website: www.learndirect.co.uk • National Extension College (NEC) - NEC has a carers into education project that offers access to courses at reduced rates. Telephone O800 3892839, website: www.nec.ac.uk

Training and Employment Improving your caring skills Many carers benefit from attending courses on learning about medication, disabilities and illnesses, e.g. Alzheimer’s, strokes and mental health. Liverpool CBU has a number of education courses, for details please contact the Service User/Carer Lead on 0151 250 5045.

• Carers Direct has a free online interactive learning programme ‘Caring with Confidence’. Telephone 0808 802 www.carersdirect.org

Training for leisure or to start or return to paid employment

0202,

website:

• Liverpool Carers Centre can help with information on local training opportunities for carers by calling 0151 705 2308.

Carers who have not worked for a while may need support to start the process of applying for jobs.

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Carers who combine a paid job with their caring (carer employees)

Carers now have the legal right to ask for flexible working. Whilst there is no legal right for this to be granted, it is expected that most employers would wish to support a valued member of staff and therefore work with the carer employee to find a mutually satisfactory arrangement.

Carer employees should be supported to stay in work or return to work if this is what they want to do (rather than it be assumed that they will give up work to care). It is important for you to tell your employer about your caring commitments.

More information is available about carer’s rights in employment and back to work information from:

Many employers are realizing that as many as 13% to 19% of their staff are carer employees and that 1 in 5 have to give up work. Keeping communication lines open between you and your employer is vital for you to manage your workload and give your employer notice in time to make arrangements when you are away.

Carers UK - sets out to promote the benefits of supporting carers and is aiming to influence working policies. Website: www.carersuk.org Working families - information on carer’s rights. Website: www.workingfamilies.org.uk Jobcentre Plus - includes local information, benefits information and back to work scheme (part of the Department for Works and Pensions). Website: www.jobcentreplus.gov.uk Guardian jobs - for careers advice, information on making CVs and preparing for interviews and jobs. Website: www.jobs.guardian.co.uk

Time off from caring (sometimes called respite)

This should be discussed with your local CMHT.

Community/peer group support The Caring for the Carer group meets every Wednesday 7pm till 8pm at Broadoak Unit, Thomas Drive, Liverpool L14 3PJ. For further information contact Lisa Gould on 0151 250 5044.

The Government is actively encouraging employers to allow flexible working patterns due to

the increasing numbers of people in the workplace with caring responsibilities. It’s worth checking with your employer's human resources policies for carer employee benefits. 18

Liverpool Clinical Business Unit

involved with the information, training and support they need.

Carer’s Group ‘Caring for the Carer’

Service users and carers who get involved are valued and offered out of pocket expenses and payment for their time. If you are interested in getting involved please contact: Margaret Brown, Equality and Human Rights and Service User/Carer Lead on 0151 250 5045 or by email [email protected]

Within Liverpool CBU we understand that carers need to be recognised, valued and supported. Come and join our carer’s group held every Wednesday evening between 7 – 8pm at the Broadoak Unit.

Contact Lisa Gould on 250 5044 for more information. Travel expenses may be reimbursed.

The Liverpool Mental Health Support group meets at Liverpool Carers Centre. For further information contact Maria Cook on 0151 705 2308.

Getting involved with the Trust It is really important that Mersey Care involves service users and their carers. It gives them the opportunity to use their knowledge and experience, develop new skills and improve services. Those involved say it contributes to their mental health and wellbeing but most importantly, involvement is about enabling people to exercise their human rights to be treated with Fairness, Respect, Equality, Dignity and Autonomy (the FREDA principles).

Volunteering Carers can also volunteer with the Trust. Volunteering gives people the opportunity to use their knowledge and experience, develop new skills and make a valuable contribution to our services. Volunteers who get involved are valued for their time and skills and will receive out of pocket expenses.

Service users and carers have the right as equal citizens to be involved in decisions which affect their lives. Our responsibility is to create meaningful opportunities for involvement and provide those getting

If you are a carer for someone who uses Mersey Care’s services and would like to volunteer your time and skills, please contact 19

Pauline Unsworth, Volunteer Coordinator on 0151 473 2952 or email [email protected]

suggestions please use the suggestion boxes, where provided, or contact Margaret Brown, Service User/Carer Lead Tel: 0151 250 5045 Email: [email protected]

Complaints, comments and suggestions

Helpful Websites & Telephone Numbers

We encourage you to raise any concerns about the services we provide as soon as possible with those responsible for the care and treatment of the person you care for. If you have any concerns, please do not hesitate to ask to speak to the manager of the service to voice your concerns.

Mersey Care NHS Trust www.merseycare.nhs.uk Carers Direct An NHS run website with information, advice and support for carers. Free confidential information and advice line: Tel: 08088087777 Monday – Friday 9am – 8pm Weekends 11am – 4pm www.nhs.uk/carersdirect.org

However, if an issue cannot be resolved or is of a serious nature, you may wish to make a formal complaint. Please contact the Complaints Department at Mersey Care NHS Trust, Maghull site, Parkbourn, Maghull, Liverpool L31 1HW or phone 0151 471 2645 or 471 2414.

Carers Direct.gov.uk Tel: 08088020202 Free confidential information and advice 9am – 4pm Monday / Friday 11am – 4pm Weekends Free from UK landlines. Can also ask for free call back.

PALS The Patient Advice Liaison Service is there to assist service users, their carers and families resolve any issues or concerns they may have. They can provide help, advice and support and guide you through the complaints procedure. They can also provide information about independent advocacy services.

Carers UK Carers UK is the leading campaigning, policy and information for carers. Advice Line: 08088087777 www.carersuk.org.uk

PALS are available on 0151 471 2377 or on free phone 0800 328 2941.

Caring with Confidence Caring with Confidence offers free learning and development opportunities to help carers build skills and knowledge. www.caringwithconfidentce.org.uk

Write to the PALS Office, Mersey Care NHS Trust, Parkbourn, Maghull, Liverpool L31 1HW.

Princess Royal Trust for Carers This interactive website provides comprehensive information and details about local support services for carers. Tel: 0844 8004361 www.carers.org

Comments and suggestions We are always pleased when someone takes the time to tell us when a service, team or individual has been particularly helpful. Equally, we are open to suggestions about what we might do to improve or change. If you would like to make any comments or 20

YCNet A supportive online community of young carers for discussion or advice. www.youngcarers.net

www.famanon.org.uk The Lesbian & Gay Foundation Information & Advice for LGBT carers Tel: 08453303030 www.lgp.org.uk/carers

Young Carers Initiative (YCI) A website providing information for young carers and their families. www.youngcarer.com

Support Group & Advice forum for LGBT Carers in Manchester & North West www.carershub.org/supportgrouplgbtcarers

Age Concern Tel:0151 330 5678 www.ageconcernliverpool.org.uk

Merseyside Chinease Community Development Assosciation (MCCDA) Provide help and support for carers in the Chinease community in Merseyside. Address: Room 8, 7th Floor, Gostlins Building, 32-36 Hanover Street, L1 4LM Tel: 0151 709 2646 E-mail: [email protected]

Barnardo’s Action with Young Carers Tel: 0151 708 7323 [email protected] Liverpool City Council [email protected]

Alzheimer’s Society Offers support to all people with dementia & their carers including members of LGBT community www.alzheimers.org.uk/gay.carers

Making Space Offers help and advice and support to carers of people with mental health problems on a range of topics. Tel:01925 571680 www.makingspace.co.uk

Glossary of terms/who’s who?

Local Solutions Liverpool Carers centre, support, advice and information. www.localsolutions.org.uk

Advocacy - assist people to say what they want. People can advocate for themselves (self advocacy) or have an independent person advocate on their behalf. Rethink, Advocacy Works and Mary Seacole House provide most of the advocacy services in Liverpool.

Partners in Care Campaign A joint campaign between Royal College of Psychiatrists and Princess Royal Trust giving mental health information to carers, relatives and parents. www.rcpsych.ac.uk

AOT - Assertive Outreach Team provides care to people who find it difficult to engage with other services.

Sanctuary Support Offers information and support to families of drug users including those with co-existing mental health problems Telephone – 0151 735 0747

Care co coordinator - a named individual designated as the main point of contact and support for a person who needs ongoing care. This could be a nurse, social worker or other mental health worker appropriate for the person’s situation.

Families Anonymous Help and support for families of drug users. Telephone – 0845 1200 660

CAB - Citizens Advice Bureau, specialist advisors who can advise on a broad range of 21

issues including employment, housing rights and welfare benefits.

health problems to access evidence based, short term psychological interventions.

CAMHS - Child and Adolescent Mental Health Service.

Liverpool Clinical Business Unit (CBU) mental health service serving Liverpool area which includes acute services for working age and older adults in both inpatient and community settings; psychiatric intensive care unit; psychological services; eating disorder service; homelessness outreach service; criminal justice liaison service; early intervention teams and assertive outreach team.

Carer practitioner - a professionally qualified worker who provides advice, support and guidance to community/inpatient staff working with the carers of service users with mental health problems. It is the role of carer practitioner to champion carer issues within these services.

MDT - Multi-disciplinary Team refers to the variety of professionals who are involved in some way in the service user’s care. Therefore the members of the MDT for one service user may be different from those of another.

CRHT - Crisis Resolution and Home Treatment Team is a multi-disciplinary team which acts as the gateway to hospital. They also offer people the choice of treatment at home, where possible. Addiction Services Drug and Alcohol Team - provides help, advice and treatment to people with substance misuse problems.

OT - Occupational therapists help people with mental health problems to build up the confidence and skills needed for personal, social, domestic, leisure or work activities. They work in psychiatric units, day hospitals and in the community.

CMHT - community mental health team is a community based multi-disciplinary assessment and treatment service for people experiencing mental health problems. Referrals are usually made by a GP.

Psychiatrist - psychiatry is the study of mental health disorders and their diagnosis, management and prevention. Psychiatrists are qualified medical doctors who have taken further training and specialised in mental illness. The consultant psychiatrist is the most senior member of the team with overall responsibility for patient assessment and care, but the psychiatric patient usually has more contact with the consultant’s assistant called the registrar.

CPA - Care Programme Approach is the name for the way care plans for specific individual service users are organized. CPN - Community Psychiatric Nurse. CMHN - Community Mental Health Nurse is a registered nurse with specialist training who works in the community. Most work as part of the community mental health team.

Psychologist - psychology is the scientific study of human behaviour and mental processes. It is concerned with the thoughts, feelings and motivations that underlie human action. There are different types of psychologists; the two most relevant to mental health are clinical and counselling. Clinical psychology concerns the assessment and treatment of mental health problems.

Early Intervention Team - a specialist multidisciplinary team to help people aged 14 to 35 years old with a first episode of psychosis. IAPT - Improving Access to Psychological Therapies is a national initiative which aims to help people suffering from common mental 22

Counselling psychologists apply talking treatments developed in psychology to help individuals and groups manage mental and emotional problems.

carer’s assessment even if the person they care for is not engaged with services. Q: Is a carer’s assessment a test of their ability to care?

Psychotherapist - the distinction between counselling and psychotherapy can be blurred but there are differences in the methods used, the intensity and length of treatment. Overall psychotherapy aims to help you understand why you are feeling the way you do and what lies behind your responses to other people and to things that happen to you.

A: No. It provides an opportunity for carers to have their role recognised and it may lead to positively influencing subsequent services and better outcomes for carers. Q: What is the difference between a carer and a care worker?

OP CMHT - specialist community mental health team for older people.

A: A care worker is paid to provide care under a contract of employment.

Social worker - offers advice on practical matters such as day care, accommodation or welfare benefits, or can link you with appropriate services. Most work as part of the community mental health team.

Q: What is meant by substantial and regular care? A: This is measured by a significant impact on the carer’s life rather than hours in the week spent caring.

Frequently Asked Questions Q: Are all carers eligible for a carer’s assessment? A: All regular and substantial carers are eligible for a carer’s assessment. Whether you are a regular and substantial carer is measured by a significant impact on your life rather than hours in the week spent caring and is down to the care co coordinator’s discretion. Q: Does the person have to live with the person they care for? A: No Q: Can carers be offered an assessment without the person they care for being there? A: Yes and this is often the best option for carers to feel free to talk about things from their perspective. The assessment can, however, be joint one with the person you care for. The carer may still be entitled to a 23