Carers Information Pack

Carers’ Information Pack

for anyone supporting a relative or

friend experiencing Mental Health problems.

Carers Pack / page
Introduction
Who is a Carer?
Diagnoses
Clinical Terms
Understanding the Jargon
Medication
Talking Treatments
Coping with changes in behaviour
Confidentiality
Mental Health/Carer Law
Check list of important questions
Carers’ Assessments
Useful Contacts
Books and Leaflets / 3-4
5
6
7-10
11-12
13-17
18-20
21-26
27-28
29-30
31-32
33
34-39
40

Introduction

This pack has been compiled to provide information to carers of people with Mental Health (MH) problems. It is mostly a selection of information available on the Internet, information which may have been adapted to make it more relevant to carers and to include local references where appropriate. The websites used are included at the end of each section in case you would like more detail.

For those who have no access to the Internet there are phone/book contacts included in the Useful Contacts section.

Each pack should also include a section that is specific to the team/area that your ‘cared-for’ person is currently receiving treatment from. This should include local contact names and numbers and some basic guidance about who you can talk to and how you will be involved the treatment process. This may include details of ward rounds, care plan meeting arrangements etc.

If this section is not included please ask the person who gave you the pack to provide this information as soon as possible.

There is a lot in this pack, it is there for you to access as you feel you need to. There is no requirement that you read it all straight away, however it will hopefully be useful if a question arises or a situation in which you require some clarification. However please feel able to ask any professional involved in the care team, there is no reason why you shouldn’t have time to have your questions responded to.

For example there follows an item from the ‘Rethink’ website listing the 14 basic ‘principles’ of becoming a carer for someone with MH problems.

Realise that severe mental illness is not rare. It may seem to be but that is because it’s “not talked about”. In the UK today, there are about 600,000 people with a severe mental illness and about 1,500,000 carers. All people like you who will face illness among family and friends.

Get to know as much as possible, as soon as possible, about mental health issues.

Never become a moth around the flame of self-blame: it can destroy your chance of coping, it can destroy you. Free yourself with the modern knowledge that severe mental illness cannot be prevented and is not caused by families.

Seek helpers who are effective. Identify them by their compassionate natures, their ability to provide emotional support information presented sensitively.

Accept that with illnesses as complex as mental illnesses, our natural instincts are not a reliable guide to caring and coping. Relatives and friends – the carers – do need training.

Join an appropriate self-help group. (See useful contacts.)

Get to know the origins of the pressures, the ever-increasing pressures, to which carers are subject.

Pay great attention to the needs of all members of the family and caring network.

Take heed that constant unconditional self-sacrifice is fatal to effective caring and coping.

Do not spend massive amounts of time with the person who is unwell.

Look after existing and establish new friendships and activities that take you out of the house.

Set your sights on the person who is ill achieving maximum independence from yourself, and on yourself becoming more independent from him/her.

In the end it is the ability to change and adapt, and to look at things differently, that distinguishes relatives who will cope, from those who will not.

Take very great care of yourself.

Based, with thanks, on “Coping with schizophrenia – a course for relatives”, The Mental Illness Fellowship of Victoria, Australia. Written by Dr Ken Alexander, Chief Research Fellow at EUFAMI, the European Federation of Families of Mentally Ill People .

Who is a Carer?

Within Mental Health anyone who regularly offers substantial support to another person experiencing mental distress is a Carer. There is a clear difference between a ‘formal’ Carer who is paid and part of a professional organisation, and an ‘informal’ Carer who is unpaid and is often a family member or friend. Informal Carers may suddenly find themselves in a position where they have to take responsibility for the ‘Cared for’ person’s wellbeing or being called upon to help in a variety of ways.

Carers may live with the Cared-for person or live at a distance but be available on a regular basis. If the support offered is important to maintaining the Cared–for person’s wellbeing then they should be recognised as a Carer.

Carers sometimes have little choice or time to prepare for the role; they are often expected to provide help of a practical nature such as budgeting, cleaning, taxi driving, organising medication etc. They may also find they have to respond to emotional needs dealing with someone who is frightened, angry, abusive, withdrawn, unrealistic or possibly very demanding of time and attention. Often they are the only source of support for long periods of time between contact with professionals or in the traumatic time before professionals become involved.

Carers need and have a right to information and support. Caring for a family member or friend requires the same skills that professionals often get many years training to do and it is important that everyone involved recognises the importance of the Carers’ contribution. They in turn may well recognise that professionals can be very pressured for time and appreciate the stress involved in the work they do. Ideally, both formal and informal Carers recognise each others skills and expertise and work together to create a shared care package which keeps the ‘Cared-for’ person as well as possible, with the minimum of stress and difficulty for all who are involved.

Diagnoses.

If the cared-for person has a clear diagnosis it may be helpful to contact relevant specialist Help Lines or get leaflets if you want further information, which can be very detailed and also include practical suggestions. It is useful to get as much information as you can whilst being aware that there may be several symptoms and experiences mentioned which may not apply to everyone.

Rethink, Mind, Royal College of Psychiatrists and several other organisations send leaflets on request or provide information on websites. (Look for reputable website providers to start with rather than looking at individual’s own sites!). Details on how to contact these organisations are in the Useful Contacts section of this pack.

Second Opinions.

Having got information, if you feel that the diagnosis is incorrect, perhaps the Care Team may be unaware of some of the symptoms, tell someone in the care team, preferably the Psychiatrist. If this fails then ask your G.P for clarification. If it is causing serious problems you may wish to request a second opinion. You are entitled to get a second opinion from another GP but may possibly find difficulties with getting one from Psychiatrists for many reasons. Rethink (see below) may be able to help or contact P.A.L.S (Useful Contacts).

Psychiatrists may take several weeks to make a firm diagnosis. This is because they do not want to make a firm statement without collecting sufficient evidence. Also, as it is not possible to ‘see’ Mental Health symptoms it may be a question of trying one medication for some weeks and if that works then it supports a particular diagnosis. Diagnosing is not undertaken lightly because of the persons’ expectations and the stigma attached to certain conditions.

(See Useful Terms)

Clinical Terms

Acute Confusional State is an episode of confusion and disorientation that is caused by an underlying physical problem such as an infection. This is more common in older people.

ADD See ADHD

ADHD (Attention deficit and hyperactivity disorder) describes the problems of (often) children who are overactive and have difficulties concentrating. In everyday life, people often describe children who become excitable, boisterous or disobedient as hyperactive. The professional term refers to a more severe and long-lasting problem.

Adjustment Disorder is a state of mixed of emotions such as depression and anxiety which occurs as a reaction to major life events or when having to face major life changes such as illness or relationship breakdown.

Affective Disorder is a term used for any disorder of mood such as depression, hypomania, bipolar disorder and seasonal affective disorder.

Agitation is restlessness associated with anxiety.

Agoraphobia is a condition that leads to extreme anxiety and fear about leaving the safe environment of home, being in open spaces or being alone or in a public place.

Agranulocytosis is a fall in the number of Agranulocyte white cells in the blood. This can be a side effect of antipsychotic treatment.

Akathisia is restlessness of arms and legs. This can be a side effect of antipsychotic treatment.

Alzheimer’s Disease is a condition causing loss of memory, intellectual decline, changes in personality and behaviour and an increased reliability on others for activities of daily living. It is a form of dementia.

Amnesia means loss of memory.

Amnesic syndrome is another term for loss of memory.

Anhedonia is an inability to experience pleasure.

Anorexia nervosa is an illness involving an intense fear of being fat, distorted body image, under-eating and excessive weight loss.

Anxiety is a feeling of unease, apprehension or worry. It may be associated with physical symptoms such as rapid heartbeat, feeling faint and trembling. It can be a normal reaction to stress or worry or it can sometimes be part of a bigger problem.

Aphasia is a term to describe problems speaking or understanding speech.

Asperger’s syndrome is a genetic disorder thought to be on the same spectrum as Autism. People with Asperger’s syndrome have difficulties in three main areas: socialising, communication and behaviour.

Auditory hallucination this means hearing a voice or sound when there is nothing there.

Autism is disorder that usually appears within the first three years of life and may result in learning difficulties, speech problems and difficulty relating to people.

Binge eating Uncontrollable episodes of eating very large quantities of food over a short period of time. It occurs in bulimia.

Bipolar disorder is a disorder in which a person can experience recurrent attacks of depression and mania or hypomania . It used to be called manic depression.

Body dysmorphophobia is a preoccupation with imagined or minor defects in one’s appearance that leads to marked distress and significant handicap.

Bulimia is an eating disorder characterised by binge-eating, vomiting and purging by making themselves sick, or abusing laxatives.

Burnout A term used to describe feeling worn out and unable to carry on with a stressful activity.

Capacity is the ability to understand and take in information, weigh up the relative pros and cons and reach a sensible decision about the issue.

Claustrophobia is the fear of being in an enclosed space.

Delerium tremens is sometimes known as 'DTs'. The main symptoms are sweating, shaking, confusion and hallucinations. It is caused by alcohol withdrawal.

Dementia is a condition in which there is a gradual loss of brain function. The main symptoms are usually loss of memory, confusion, and problems with speech and understanding, changes in personality and behaviour and an increased reliance on others for activities of daily living. There are a number of causes of dementia. Alzheimer’s disease is the most well known.

Depression is a common condition. The main symptoms are feeling low, sleep problems, loss of appetite, concentration and energy. It can be very severe and include symptoms of psychosis. There are a number of treatments that can help.

Depersonalisation is an uncomfortable and, for some, a frightening feeling in which people feel unreal and detached from their surroundings. It's related to derealisation which is when people feel that things around them are unreal.

Dystonia is a prolonged muscle spasm which can be extremely painful. These can affect various parts of the body and cause unusual movements and postures. It can be a side-effect of some antipsychotics.

ECT-Electro Convulsive Therapy. Used only in severe cases, mostly with Depression and Schizophrenia. Always involves getting special permission, and an assessment by an independent psychiatrist if under Section. Should be fully discussed with Carer and cared-for person.

See medication section.

Hypomania A state of high mood that is not quite so severe as mania.

Mania A state of extreme over activity and high mood. It is seen as the opposite of depression.

Manic depression is a condition in which people have mood swings that are far beyond what most people experience in the course of their lives. These mood swings may be low, as in depression, or high, as in periods when we might feel very elated. These high periods are known as ‘manic’ phases. Many sufferers have both high and low phases, but some will only experience either depression or mania.

Obsessive Compulsive Disorder is a fairly common problem where people experience ‘obsessions’, recurring unwanted thoughts which are difficult to stop, and ‘compulsions’, rituals of checking behaviour or repetitive actions which are carried out in an attempt to relieve the thoughts.

Panic Attack is an intense and sudden feeling of fear and anxiety. It is associated with many physical symptoms such as rapid heartbeat, trembling, rapid shallow breathing, pins and needles in the arms and feeling faint. Many people who have a panic attack fear that they will collapse or die. These attacks are not physically harmful and usually go away within 20-30 minutes.

Paranoid psychosis The main symptoms of this condition are hallucinations and delusions, often with a change of mood. It includes a fear of being persecuted.

Parasuicide is sometimes called Deliberate Self-Harm (see Self Harm). It is a term used when someone deliberately hurts but does not kill themselves.

Personality disorder describes someone who has severe disturbances of their character and behaviour. Personality disorders usually appear in late childhood or adolescence and continue into adulthood. The thought patterns and behaviours cause distress to the person or to those around them.

Phobia is an irrational and intense fear of a situation or object.

Postnatal depression is a mental illness that occurs within the weeks or months after childbirth.

Psychosis is a condition in which a person isn't in contact with reality. This can include: sensing things that aren't really there (hallucinations); having beliefs that aren't based on reality (delusions); problems in thinking clearly; and not realising that there is anything wrong with themselves (called ‘lack of insight’).

Puerperal psychosis is a mental illness that comes on after childbirth. The symptoms are usually severe depression or mania, often with psychotic features.

Schizophrenia is a major mental illness affecting about 1 in a 100 people. The main symptoms are hallucinations (hearing voices), delusions (a firm belief in something that isn’t true) and changes in outlook and personality

Seasonal affective disorder (SAD) is a form of depression or mood disorder with a seasonal pattern. The symptoms of SAD are most obvious during the winter months when the days are shortest and may disappear in the summer.

Self Harm is usually a coping technique using different ways of hurting oneself. It is a strategy usually adopted to survive intense emotional difficulties, which can then become habitual. It is not usually a suicide attempt.

Social Phobia is feeling intense fear and anxiety when a person is doing something in front of others. Common situations that provoke this anxiety can include eating and talking in public.

Substance misuse is a term that refers to the harmful use of any substance, such as alcohol, a street drug or misuse of a prescribed drug.

Suicide The purposeful taking of one’s life.

Tardive dyskinesia Abnormal movements that can occur after long-term use of some older antipsychotic drugs

Tourette's syndrome A condition in which people may have abnormal movements and a tendency to call out or make noises.

Vascular dementiaA common cause of memory loss or dementia in older people. It is due to furring up of the arteries supplying the brain leading to very small strokes that can cause progressive brain damage.

Understanding the Jargon

Advocate-an independent person who helps and supports an individual to get their point of view represented.

A.S.C -Adult Social Care/Social Services. Responsible for community based and ‘non-health’ elements of care.

Assessment-identifying an individual’s particular need for services when they are not in Hospital. This should involve the person themselves, carers and any agency involved with them. In medical terms, it can also be used as ‘clinical assessment’ by health staff, often when in hospital.

A.S.W -Approved Social Worker. Specially trained to act as a key person in Mental Health Section legal procedures.

Care Co-ordinator-the person (in the community) responsible for the Care Plan, for organising it and making sure it happens. May also be called Keyworker.

Carer’s Assessment - a formal, separate assessment of a Carer’s needs to be able to continue caring and as an individual in their own right. Should be taken into consideration with the ‘cared-for’ persons Care Plan. Carers have a legal right to this and should ask any CPN or Social Worker or call Social Care Direct.

C.P.A -Care Programme Approach .A regular meeting of all involved in an individual’s Care to co-ordinate and plan treatment, written as ‘The Care Plan’. Carers should attend and should have a copy (unless the Service User expressly refuses permission).

CAMHS -Child and Adolescent Mental Health Service. Separate service for the treatment of children under 16.

CBT -Cognitive Behavioural Therapy . A popular talking therapy with a structured way of working to change an individual’s beliefs if they are not helpful. Obtainable privately but expensive, see useful contacts.