Carers Information Pack

Mental Health Carers

Supporting someone who has psychosis can be difficult. Your relative or friend may appear to be different either as a direct result of their symptoms, or because of the side effects of their medication. Their behaviour may be unusual, irritating and hard to cope with, or at times unreasonable and perhaps frightening.

As a ‘carer’ you may need to give emotional support and offer practical help on a day-to-day basis. Your supporting role may consume your time and be emotionally exhausting. When the person you are supporting first becomes unwell, it may feel as if your world has been turned upside down.

Everyone needs to find their own coping strategies, but it sometimes helps if you talk to other people who have been in the same situation as you. They can understand how you feel and share ideas for dealing with difficulties.

Getting information

It may help you to find out information about psychosis and the diagnosis your relative or friend has been given. This will help you understand more about the way he or she is behaving. This in turn may help you be more tolerant and less likely to feel irritated, angry or stressed.

What is Psychosis?

The word psychosis describes a set of symptoms that includes delusions, hallucinations – hearing voices, for example – and confused or disturbed thoughts. When people experience these symptoms, mental health professionals say they are having a psychotic episode. Psychotic episodes can vary in length: they can last for a few days, for much longer, especially if untreated and they can also come and go.

When people have a psychotic episode, they are often unaware that they are unwell. They believe what they are experiencing is actually happening to them – that they really are being followed, they really are at risk, or really are being threatened, for instance. Mental health professionals call this ‘lack of insight’.

Psychosis is a symptom of schizophrenia, bipolar disorder and schizoaffective disorder. It can also be a symptom of dementia, some forms of personality disorder, epilepsy, Parkinson’s disease and other illnesses. People who abuse drugs and alcohol sometimes experience symptoms of psychosis, and psychosis can occur as a side effect of some types of medication. Psychotic experiences can be triggered by severe stress or anxiety, severe depression or sleep deprivation.

It is best to get advice and treatment for the symptoms of psychosis as soon as people start experiencing them. Talk to your GP who can refer you to specialist services. Most mental health NHS Trusts now run Early Intervention services for young people who have experiences that may be the first signs of a psychotic episode.

Delusions and paranoia

Delusions are strong beliefs that are unlikely to be true. However, a person who has psychosis firmly believes them to be true, and as a result may say things that are strange, or behave in an odd way.

Often, someone with psychosis will believe that other people or organisations are out to get them, are spying on them or watching them, are trying to trick them, hurt them or even kill them. These paranoid delusions can be very frightening for the person who is unwell.

Sometimes people believe they have a special power or authority – that they are able to control other people’s thoughts, for example. Sometimes people have religious delusions – they may believe they are the mother or son of God for example.

Confused and disturbed thoughts

During a psychotic episode, people have disturbed and confused thoughts. Their thinking may speed up or slow down, and their mind may be full of different and random ideas. Their jumbled thinking may be reflected in the way they speak.

They may talk very quickly, without stopping, and without listening, or they may suddenly stop talking mid-sentence, or refuse to talk at all. They may say things that don’t make sense, or randomly switch from one subject matter to another. If they stop speaking suddenly, it may be that they have been distracted by hearing voices, causing them to lose their train of thought, rather than that their mind has just gone blank.

Because of this muddled thinking, it may be difficult to follow what a person is saying, and hard to have an ordinary conversation with them.

Hallucinations

People with psychosis may see, hear, smell, taste or feel things that are not there. They may see people or objects that no one else can see or feel insects crawling on their skin.

Auditory hallucinations – hearing voices – are very common. These voices are entirely real to the person who is hearing them, so he or she may talk back and hold a conversation with them. Voices may say upsetting, critical, cruel and frightening things to or about the individual. Some voices tell people what to do – and can sometimes dictate harmful or dangerous actions. Most people try to resist these aggressive commands, but often feel they must obey because they believe the voices are powerful and fear what will happen if they do not.

Imaging techniques have allowed researchers to see what happens inside the brain when people are hearing voices. The reason people who hear voices think they are real is because they hear them through the same system that everyone uses to hear external speech, in a part of the brain called Broca’s area. They therefore experience their thoughts as spoken words coming from the outside world.

Change of behaviour

The experiences of psychosis may overwhelm people’s feelings and emotions. Delusions and hallucinations take over the way they see the world and become their reality. As a result, people who are unwell may appear to be different – not the same person as they were before they started having the symptoms of psychosis. They may become very excited or agitated and suspicious of other people. Or they may become miserable and withdrawn, refuse to see people and lose interest in everything they previously did. They may neglect their self care.

It is important to remember psychosis can be very frightening for the person who is experiencing the symptoms. If the symptoms are severe, people can find it impossible to tell the difference between their own experiences and outside reality, to think logically or talk about how they are feeling, or to put their strange thoughts, emotions and fears in context. They may lose concentration and become distraught at not being able to deal with, or stop, what is happening to them.

Support for Carers

The mental health team involved in supporting your relative should also include you in discussions about treatment and care, unless your relative asks them not to. If you are in close (daily) contact with and offer support to someone with schizophrenia, you could ask for family intervention to be offered to you, as recommended in the NICE (National Institute for Health and Clinical Excellence) guidelines, and as part of the package of care given to your relative.

Living with someone with psychosis can be demanding and difficult. People can feel incredibly worried and anxious, sometimes frustrated, or angry, or resentful.

Relatives may feel guilty, feeling somehow responsible for the illness. Because of the stigma still associated with mental health problems, you might feel ashamed that this has happened to someone in your family.

Your caring and supporting role may begin to dominate your life. However, it is important to try to have some perspective on these problems: your caring role should not be the only focus of your interests and concerns.

It is likely that you will need some support to help you deal with the range of emotions you may feel, and with the day-to-day practicalities of living with someone with psychosis. Maintaining your own interests, keeping a job, or having time away will also help you to cope more effectively and tolerantly with the difficult symptoms and problems that may arise.

This means there will be less tension in the house and fewer arguments. Research has shown the importance of a calm and supportive atmosphere which will help your relative or friend recover more quickly and stay well for longer.

Training for carers

Rethink runs a training programme for carers, offering information and support, and giving them skills to help them in their caring role.

Who Runs Mental Health Services?

The NHS runs primary care and secondary care services. Primary care services are your first point of contact with the NHS: your GP, your dentist, your optician, for example. NHS walk-in centres, and the NHS Direct phone service, are also primary care services.

Secondary care services are specialist services. These include specialist mental health services, provided at hospitals, outpatient clinics, or by community based teams of health professionals. Most mental health services are run by NHS mental health Trusts, and many of them are ‘integrated services’. This means they include social workers employed by the local authority.

Secondary care services, including mental health services, are currently ‘commissioned’ and ‘purchased’ by Clinical Commissioning Groups. These CCGs spend about 80 per cent of the total NHS budget: they each cover a specific area and decide what specialist health services the people living within their boundaries need. ‘Commission’ means they ask (and then pay) other CCGs as well as voluntary and private sector organisations to provide those services. CCGs work together with local authorities as ‘joint commissioners’ to plan and provide some services, particularly community based mental health services.

The sort of mental health services available vary according to the way a CCG decides to spend its money, so some types of services and community based teams may not be available in your neighbourhood. Services and community based teams may also be called different names by different NHS mental health Trusts.

Community mental health teams

These are teams of mental health professionals who work with people with mental health problems and support them in their home. You may see community mental health teams referred to as CMHTs.

The professionals working for these teams include psychiatrists, mental health social workers, community psychiatric nurses, psychologists and occupational therapists – all the main professions involved in mental health care. Some teams include a vocational specialist or advisor who can help people prepare or look for work. Each team member often has their own individual case load. Community mental health teams have been around for a long time and have become the mainstay of community-based (as opposed to hospital-based) mental health care.

Community mental health teams operate differently in different parts of the country, depending on the policies of the local NHS mental health Trust.

Sometimes they are divided into teams of staff who each focus on specific areas such as ‘recovery’. Other community mental health teams are ‘generic’, offering services for a wide range of problems. This tool provides a guide to the correct support for you.

Services Available

Health and Social Services

A GP is usually the first point of contact for people experiencing mental health problems and their carers. They can refer patients on to specialist services provided by the appropriate Community Mental Health Team, comprising health professionals and social workers. For emergency treatment you should go to the Accident and Emergency department.

The type of service provided will vary depending on the nature of the person’s illness, but broadly falls into two categories:

Some form of occupational therapy is also often used.

If you need advice on any health issue you can call NHS 111 (24-hours).

They can deal with urgent and non-urgent queries and give free, confidential advice on medical conditions and issues relating to the health service.

Hospital treatment

If the person you care for agrees to hospital treatment, they are a voluntary patient. If it is thought that hospital care is the most appropriate treatment, but the person you care for refuses to go, a compulsory admission is possible as outlined in the Mental Health Act. In such cases the person is sometimes said to be sectioned. This usually only happens after an assessment by two doctors and a social worker, who must consult with the person’s nearest relative (as specified in the Mental Health Act).

Voluntary organisations

Southwark Carers works in conjunction with the Mental Health carers project worker. This project provides support, advice and information to people who care for a friend or relative with mental health problems. There are several mental health carers support groups in the Borough, that can be accessed via Southwark Carers or a local CMHT.

Find us

Southwark Carers
3rd Floor, Walworth Methodist Church,
54 Camberwell Road, London, SE5 0EN
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Contact us

020 7708 4497

Find us

Nearest tube – Elephant & Castle underground station (Northern and Bakerloo lines).

Nearest Railway Station – Elephant & Castle

Buses from Elephant and Castle – ask bus driver for Burgess Park. Bus numbers: 12, 171, 148, 176, 68, 484, 42, 40, 45