FAQs and Diagnoses

The Mental Capacity Act is there to provide a legal framework for acting and making decisions on behalf of people over the age of 16 who lack the mental capacity to do these acts and make these decisions for themselves. It replaces existing common law governing the treatment of people without capacity. As a carer why do I need to know about the Mental Capacity Act? The Mental Capacity Act will be relevant to anyone who has a relative or friend who may lack capacity.

• It will clarify the process for caring for people who may lack capacity
• It will clarify how decisions should be made for your relative or friend if they are unable to make those decisions for themselves
• It sets out who should be consulted about decisions made on behalf of your relative or friend
• It sets out how your relative or friend is protected when others are making decisions on their behalf

Inability to make a decision could be for many reasons including suffering from mental health problems. The person you care for may lack the capacity to make decisions about money, health and other matters. You may need to help them to make those decisions or you may have to take action or make decisions on their behalf.

When does the Mental Capacity Act start to work?

There are two distinct phases the first in April 2007 and the second in October 2007.

What is Mental Capacity?

If you have mental capacity, it means that you are able to make your own decisions. The legal definition says that someone who lacks capacity cannot do one or more of the following things;

• Understand information given to them
• Retain that information long enough to be able to make a decision
• Weigh up the information available to make a decision
• Communicate their decision

Key principles

Here are the outlines of some key principles that are important to understand;

• All adults have the right to make decisions for themselves unless it can be shown that they are unable to make it.
• Everyone should be given all the help and support they need to make a decision before anyone concludes they cannot make a decision
• People are allowed to make what we may think is an unwise or eccentric decision. We cannot say because we think the decision is unwise that the person does not have the capacity to make the decision.
• Any actions or decisions made on behalf of someone who lacks capacity must be done in their best interests, after considering what is known about their preferences (unless they have made a relevant and advance decision to refuse medical treatment). It is still important to involve the person wherever possible in making the decision.
• The final principle of the Act is to make sure that people who lack capacity are not restricted unnecessarily. So someone making a decision or acting for someone who lacks capacity must consider whether it is possible to do this in a way that would interfere less with the freedoms and rights of the person who lacks capacity.

This brief outline was taken from 'Making Decisions' – a guide for family, friends and other unpaid carers. It is available on line at: www.dca.gov.uk/legal-policy/mental-capacity/publications.htm

Carers need information when they come into contact with services. The checklist below may help you get the information you need about the diagnosis and the treatment of the person you care for. General information on mental illness can be given but specific information about the person you care for can only be given to you with their permission. If consent is given, you may be able to get some information from members of the clinical team involved, or staff may be able to provide you with some written information to take away. You may not want to ask all the questions on the list but it may help you to prepare for when you meet the psychiatrist and members of the mental health team. You may have questions of your own you wish to ask, and not everyone will require answers to all the questions all at once. We hope that this list will provide a useful framework to help you decide what information you need to know. If a diagnosis has been made;

• What are the symptoms, which suggest this illness/diagnosis?
• Is there information about this illness? Disorder?
• Do you know what might happen in the future? Is there anything that will suggest it will get worse or better?
• Is there any written information that can be provided about this illness/disorder?

About The Illness

• Is there a diagnosis or a problem?
• If a diagnosis is made, what are the possibilities?
• Why did this happened to this person?
• Is this person likely to recover?

About the assessment

• Has an assessment already been done?
• Will any other assessments be required?
• Have any physical problems been discovered, if so how will these be dealt with?
• Has this person's background and culture been considered?
• Care Programme Approach (C P A)
• Can you explain what a C P A is?
• Is the person on C P A? If not why not?
• Will I be asked to be involved in the C P A?

About Treatment and Care

• What treatment and care will be provided?
• Who and what is a care co-ordinator?
• What will a care co-ordinator provide in the persons care?
• Will other members of the team be involved in the treatment?
• Is there a plan for the treatment?
• Do you have any idea how long they will need the treatment for?
• Are there any talking treatment e.g. cognitive behavioural therapy, family therapy? Would these be helpful? Are they available and is there a waiting list?
• If the person refuses treatment what will happen?

Sharing Information

• How much information will they be happy to share with me? Will I be informed of ward rounds and meetings involving the care and treatment?
• Will I be able to talk to staff on my own?
• Will they ask me for any information about the cared for person or the family?
• Can I share information with you that will not be shared with the person and other members of staff?
• Are confidential views marked clearly in their notes?

Care and Treatment

• In what way can I help?
• Is there any information on local self-help or carers groups that can give support and help me understand the illness?
• Where can I get advice and information on training for day-to-day management?

Getting Help

• If necessary how do I get in touch with you?
• How can I arrange to see you?
• Who is the best person to contact if I am worried about behavioural problems?
• If I suspect they are becoming unwell again what do I do?
• Is there an emergency number I can contact, and what help might be available?
• How can I go about getting a second opinion if I should I want one?

Carers

• Who should I ask to explain the difference between a carer, nearest relative and a nominated person?
• Who should I talk to if I feel I have specific needs of my own?

Medication

• Will they inform me what medication is to be used, and how?
• What dose is being prescribed?
• Will he/she be put on a low dose to start with?
• How long does it take to work?
• Will the medication be reviewed regularly?
• When discussions about the dose and type of medication take place, will I be involved?
• What will be the benefits of this medication in the short and long term?
• What will be the possible side effects of this medication in the short and long term?
• Why has this particular medication been chosen?
• Is there any indication how long the medication will have to be taken for?
• If this medication does not work what other alternatives are there?
• What symptoms should I look for that the dosage has to be changed?
• Is there any thing I can do to help if he/she experiences unpleasant side effects?
• If he/she stops taking the medication what is likely to happen?
• Is there any written information on the medication, that you can supply, for me to read?

Hospital Treatment

• If he/she needs to be admitted to hospital would you be able to give any indication as to how long it would be for?
• Which hospital would it be?
• Will the ward be locked to which he/she is admitted?
• If he/she is permitted short-term leave when and how will I be informed?
• How often will I be able to visit him/her?

Discharged From Hospital

• When will discharge planning start?
• Will I be involved in it and who will liaise with me?
• When he/she is discharged what arrangements will be made for aftercare and monitoring?
• What will happen if I am unable to look after he/she when discharged?
• Will I be expected to help with medications?
• Are there any self- help techniques that will help recovery?

Care Co-ordinator

This is a qualified member of staff who has responsibility for a caseload of clients. They will work with each client to coordinate their care plan, which has been devised, in full consultation with the client and other team members, using the Care Programme Approach – CPA. They also have a responsibility to support carers.

Approved Social Worker

All Social Workers have a professional qualification to work with people and families who are experiencing difficulties and distress. Social workers working in Mental Health can go on to do further training in Mental Illness to qualify as an Approved Social Worker. They are obliged to do regular refresher training to maintain this status. It is their role to work with the GP and psychiatrist to arrange compulsory admission to a hospital for people who are considered at risk without medical intervention. This means they are trained and qualified along with other Mental Health professionals to 'section' people. That is they are legally qualified to have someone admitted to a psychiatric unit under the Mental Health Act.

CPN: Community Psychiatric Nurse/Mental Health Practitioner

These are Mental Health trained nurses with further training in treating mental illness in the community.

OT: Occupational Therapist

Occupational Therapists are qualified members of staff who offer a wide range of activities that aim to improve the quality of life and day-to-day functioning of people with mental health problems.

STR Workers: Support Time Recovery Workers

These are unqualified members of staff who work under the direction of the Care Co-ordinator. They work closely with the client to enable their recovery and promote their independence.

CSW/CPW: Carers' Support Worker/Carers' Practice Worker

These are unqualified members of staff who work under the direction of the Care Co-ordinator. They work with carers to provide information, guidance, advocacy and emotional support.

Psychiatrist

A doctor who has had further training in Mental Health. They are the only professional who can prescribe medication and make diagnoses.

RMO: Responsible Medical Officer

The psychiatrist in charge of a case and carries the ultimate responsibility for that case.

Clinical Psychologist

These professionals are trained in more complex talking treatments, assessment of functioning and mental health issues.

Surrey and Borders Partnership NHS Trust is committed to involving people who use services and their carers in planning their care. The Care Programme Approach is known as CPA and is the framework for providing care to people over 16 with mental health problems and people with learning disabilities who also have mental health problems. It is the way of assessing your needs and planning with you the best way for Health and Social services to ensure that your needs are met.

What does it involve?

• An assessment of your health and social care needs
• You will be offered a written Care Plan detailing the help and support that you will receive
• Regular review meetings to discuss how your care plan is working and agree together changes that may be needed
• A named Care Co-ordinator who will work specifically with you
• The confidence of knowing who to contact and what to do in times of crisis

Carers will be offered an assessment of their own needs, which should be reviewed every year.

Assessing your health & social care needs

We will meet with you to discuss and assess your health and social care needs and the care and support you need. With your permission, other people who know you well, e.g. your carer, or close relative, may be asked for their views about your needs. Additionally your GP and other professionals involved in your care will be consulted. We will take account your gender and any issues of culture and ethnicity that are important to you. With your full involvement we will agree a plan of your care including the support and services that will be provided and what to do and who to contact in times of crisis. You will be given a written copy of your Care Plan to sign if you are in full agreement. Your carer will be involved in developing this plan if you wish them to be.

You may find it helpful to plan ahead for your care in the event that you are unwell in the future. You can do this through what is call an advance statement in which you can express your wishes about your care. Your care co-ordinator can help you with this.

The Care Co-ordinator

The Care Co-ordinator is the professional whose role it is to organise your CPA review meetings, to co-ordinate your care and to ensure that your care and support is provided by those named in your care plan. The Care Coordinator will normally be the central point of contact with services and the person you or your carer generally speaks to. The Care Co-ordinator may be a nurse, social worker, doctor, psychologist, occupational therapist, or at times and with your agreement, a service in the community that works in cooperation with Surrey and Borders Partnership NHS Trust. If issues of gender, culture or ethnicity are important for you, this will be considered, whenever possible, in the allocation of your Care Co-ordinator.

Care Plans and CPA Reviews

Your Care Co-ordinator will arrange with you a date and place for you and everyone involved in your care to attend your CPA review meetings. CPA reviews are meetings where your Care Plan is reviewed by discussing what is working well and what may need to be improved or changed. Views can be expressed, problems identified, progress discussed, medication reviewed and necessary changes to your care plan made. If you find it difficult to express your views in the meetings, you will be encouraged and supported to bring your carer, advocate or a friend to support you. At the end of the CPA review you will be given a written copy of the revised care plan and asked if it records accurately what was discussed and agreed at the meeting. You will then be given a copy of your care plan to sign.

CPA reviews must be held at least once a year, but in many cases will be held more frequently. You or any one involved in your care, can request an early review if required.

Carers, with the agreement of the person receiving care, can attend and be involved in the CPA review meeting.

What if I am unhappy with my assessment or care?

You have the right to disagree and are encouraged to discuss the care and support that you are receiving with the staff involved in your care. You should discuss any concerns with your Care Co-ordinator. If you feel unable to do so, we would encourage you to seek support from someone, e.g. an advocate who can support or represent your views.

What if I am concerned about attending CPA reviews?

If you are concerned or worried about your CPA review, you can prepare by discussing your concerns with your Care Co-ordinator or by having an advocate, family member or friend come with you.

Confidentiality

Health & Social Services may need to share information about you to make sure you receive the care you need. Your GP will also need to be kept informed about your treatment, progress and care plan. Information will only be passed to other agencies, e.g. Housing or Voluntary Agencies, with your permission and if they have a direct need to know in order to help 

Department of Health guide called 'Medicines Management: Everybody's Business

DVLA information on fitness to drive

This is a mental illness that affects 1% of the population. Both men and women are equally affected and it is rare in people under 15. If a member of the family is diagnosed with schizophrenia it does not mean that the others will also get this illness. People are usually diagnosed between the ages of 15 and 35. The cause of schizophrenia is yet to be found. It is thought likely that combinations of different factors cause it and these will be unique in each case. Research has shown that genes account for about half the risk of developing the illness. The particular combinations of genes that are responsible are, as yet, unknown.

Symptoms can be started or aggravated by major stressful events such as:

• Major life changes such as going to university
• Bereavement
• Break up of a relationship
• Losing a job
• There is good evidence to indicate that the use of cannabis doubles the risk of schizophrenia

The symptoms of this illness are commonly categorised into two groups called positive and negative symptoms.

Positive symptoms are the more obvious symptoms of this type of mental illness. Positive symptoms include:

• Hallucinations
• Delusions
• Thought disorder
• Feelings of being controlled

With negative symptoms it is important to recognise that these symptoms are part of the illness too and can be frustrating for carers. Negative symptoms include:

• Poor ability to 'keep going' and neglecting personal care
• Diminished ability to concentrate
• Apathy, including emotional withdrawal and blunting of emotions
• Finding it hard to be around or take an interest in others

Looking into the future of someone who is diagnosed with this condition:

• 1 in 5 will get better within 5 years of their first episode of the illness
• In 3 out of 5 cases will improve but will have episodes when their symptoms are worse than others.
• 1 in 5 people diagnosed with schizophrenia will continue to have problematic symptoms.

If diagnosis is made promptly, and treatment is begun as soon as possible,the need for admission to hospital is reduced and the patient is more likely to be able live at home and hold down a job.

Useful websites for further information:

• Royal College of Psychiatrists 
• Mind 
• Rethink 

See Royal College of Psychiatrists

A person suffers from an eating disorder when they show extreme behaviours towards food: - severe overeating or severe reduction of food intake. They show feelings of extreme distress or concern about the shape of their body or what they weigh. Anorexia and Bulimia Nervosa are the two main types of Eating Disorders. There is a third type, which covers 'Eating Disorders not otherwise specified', and these are pulled together under the heading 'EDNOS'. There are specific indicators to enable a diagnosis of a specific disorder.

Eating Disorders are far more common in women and girls. Boys and men are in the minority being 5 –15% of those with Anorexia or Bulimia. The most common time for an Eating Disorder to develop is in adolescence or early in adult life. However they have been diagnosed in childhood and later in adult life. These disorders can occur alongside other psychiatric conditions and can cause physical health problems such as heart conditions and kidney problems.

Useful websites for further information:

• Royal College of Psychiatrists www.rcpsych.ac.uk
• Mind www.mind.org.uk
• Rethink www.rethink.org

Reproduced with kind permission from the National Autistic Society

• Asperger's Syndrome is not a mental illness.
• It is a developmental disorder affecting communication, social relationships and social imagination. This is also called "The Triad" (Wing & Gould, 1979).
• Social Communication refers to difficulties with both verbal and non-verbal communication, such as reading facial expressions, verbal intonation and body language.
• Social Relationships is about someone's ability to make friends and instinctively knowing, learning and applying social rules, such as greetings.
• Social Imagination concerns our ability to pick up on verbal and non-verbal cues to infer what someone else might be thinking.
• Asperger's Syndrome can be associated with and may make someone more vulnerable to develop mental health difficulties such as anxiety and depression.
• Sometimes Asperger's Syndrome is not diagnosed until later in life and may be initially misdiagnosed as a-typical schizophrenia.
• Some people affected by Asperger's Syndrome are very good at "hiding" their difficulties. This takes an enormous amount of mental effort and can leave the person exhausted or unable to cope with small changes as pressure builds up.
• Diagnoses such as ADHD and schizophrenia are not uncommon before Asperger's Syndrome is diagnosed, and either or both can also be a valid part of the total diagnosis.
• Everyone with Asperger's Syndrome is unique: some are able to cope better than others in some areas of their life at different times in their life.

Many individuals with Asperger's Syndrome can benefit from:

• Understanding that people with Asperger's Syndrome are often very intelligent individuals who can struggle to make sense of the social world.
• Clear and precise communication, sometimes in writing
• Giving the person time to think before telling them what is going to happen to help anticipate changes, as structure reduces their anxiety
• Keeping calm

For more information and support

National Autistic Society
www.autism.org.uk
Autism Helpline: 0845 070 4004 (Mon-Fri 1am-4pm)

NAS Surrey Branch Parents support network 
Surrey Branch Chair: Sara Truman
nas@mugsy.org

NAS Surrey Autism Resource Centre
Godalming, Surrey
01483 869 552
bettina.stott@nas.org.uk

Guide to Asperger's Syndrome

Bipolar Disorder used to be called Manic Depression. It is a relatively common illness affecting 1% of the population. This condition causes extremes of mood far beyond those normally experienced. These extremes are called episodes. They characterise the disease and are far beyond what most people experience in life. It can be diagnosed during or after the teenage years but rarely after the age of forty, affecting both sexes equally. The illness has a unique identity for each person, some affected more by depressive episodes and for others it is the other way around. These extremes can happen only occasionally. If they are experienced frequently, the illness may have entered a phase called 'rapid cycling'.

These episodes affect thoughts and behaviour as well as mood.

• Low episodes: these engender feelings of intense depression. The patient can feel desperate, hopeless, useless and even suicidal. It can make people unable to think properly, have poor concentration, finding it hard to make even simple decisions. They can also feel restless and agitated. These feelings can make the patient wish to avoid contact with others and feel very tearful, though not always being able to cry. I can blunt the appetite and cause constipation. Sleep can become difficult, with problems getting off to sleep and waking earlier than usual.
• High episodes: called mania, it causes patients to feel more optimistic and important than usual and irritated with others who cannot view the world through their perspective. They can become over familiar and hypercritical of others. They become full of ideas that are unrealistic and speech becomes faster. They can make decisions on the spur of the moment spending money far beyond their means. This condition makes people feel invincible and insulted if someone suggests that they may be unwell.

If an episode of depression or mania becomes very severe patients can loose contact with reality. Extreme mania makes them feel extremely important or that they have special powers. Severe low mood can cause feelings of guilt and even the feeling that you do not exist at all.

Between these extremes of depression and mania it is now accepted that people with this illness continue to experience low levels of depression even though they appear to others to be well.

Useful websites for further information:

• Royal College of Psychiatrists www.rcpsych.ac.uk
• Mind www.mind.org.uk
• Rethink www.rethink.org