Hearing Voices and Disturbing Beliefs

Who is this guide for?

This guide is for people who hear voices or hold beliefs that they find disturbing. This guide can help you make sense of what his happening to you. If you hear voices and are happy with the experience then this guide may not be particularly relevant to you. 

It is important to remember that you are not alone, up to 10% of the population experience hearing voices.  In addition, up to 75% of the population have reported one-off experiences like hearing someone call their name. 

To offer some help, a group of us (made up of people who have personal experience of hearing voices and holding disturbing beliefs, as well as carers and relatives and clinicians), got together to produce this guide to help navigate and learn more about hearing voices and holding disturbing beliefs.  The guide also provides you a space to write about your own experiences.

For most people there is not a simple and straightforward answer as to what causes voice hearing and disturbing beliefs.  Some factors have been shown to increase the risk of hearing voices and having disturbing beliefs. These include having close family members who have had the same experiences, traumatic life events, recreational drug use, stress and mental health difficulties.  Negative cycles can often take place when someone feels unsafe which leads to them avoiding doing things that they would normally enjoy, worsening and their mental health difficulties. Seeking help early can help break this negative cycle.

When you first experience hearing voices and have disturbing beliefs, it can be very frightening and confusing as to what is happening. These experiences can happen gradually or suddenly which can have an impact on how you  feel. If they happen slowly, then it can be wearing, if they happen quickly, they can be a shock. Both can be extremely exhausting.

Most people who seek help regarding hearing voices are in distress.  They might find that it reduces their ability to continue with their day-to-day life. In most cases, the sooner you seek help the easier it will be to reduce your distress.  Receiving help may involve discussing and managing your own misconceptions, as well as those of people around you.

Here are some of the personal experiences from people who wrote this guide.  You might experience some, or all of these, as well as others that are not listed below.

• You may feel tired and lack motivation.
• You may suffer from depression.
• You may experience panic. 
• You may experience anxiety.
• You may be in a world of your own.
• You may be staring without blinking.
• You may feel social isolation.

Hearing voices can sometimes be described as auditory hallucinations, however, the writers of the guide found the term ‘hearing voices’ to be more appropriate.

• They may be coming out of the air.
• They may be in your head.
• They may be in your body.
• It may be your own voice.
• It may be the voice of someone else.
• There may be more than one voice.
• It may seem like a cross between a voice and a thought.
• The voice you hear may have a specific identity you can recognise.
• Voices can be loud or quiet.
• Voices can communicate many different emotions.
• They may be critical.
• They may be friendly.
• You may hear sounds that are not like ordinary speech, like whistling, whining, singing, humming and murmuring.
• You may have other sensations alongside, like seeing things that aren’t there, sensations in your body, or the feeling of a presence.
• You may be able to influence your voices or anticipate when they are going to occur.
• They may vary in strength and frequency from day to day and over longer time periods.

Some people find the voices helpful, some do not.

Some positives

• They can provide company.
• They may cheer you up and make you laugh.
• A “good voice” can help against a “bad” one.
• They can help you to cope with bad things that happen in your life.
• They can make you feel special.

Some negatives

• They can be very repetitive, particularly if linked to past experiences.
• They can cause paranoia.
• They can be upsetting.
• They may say frightening things about harming yourself or others.

Different people call this experience by different terms.  Doctors may refer to it as “delusions".  Others may describe it as having “false beliefs” but we have chosen the term “disturbing beliefs” because this experience can disrupt and disturb your life.  At the same time, for some people these beliefs can be comforting.

What they may be like:      

• You may feel everyone else is out of step - not you.
• You may feel statements on TV or radio refer to yourself.
• You may feel that everyone is against you (sometimes called a persecution complex).
• If you hear voices, you may feel that your beliefs offer an explanation for them.

As a result you may not be able to enjoy things like you used to.

All this can lead to feelings of paranoia which can develop into a negative cycle, each experience triggering another.

The caring relatives within the group shared their thoughts and feelings which they experienced when their loved ones began hearing voices:

• You may know something is not quite right.
• You may feel in an awful position and not know who to turn to.
• You may feel helpless and not know how to offer help.
• You may find yourself looking at your loved one and thinking “they have changed, they are lost”.

• You may not want your relative or friend to be labelled.
• You could describe it as having had a psychotic episode.
• You may find people think that the person's parents are responsible or to blame.
• The stigma can be hard on the relative: you may find you can’t talk to anyone in case they find out.
• You may or may not find a diagnosis helpful - some people don’t want the label whilst some do.

You, or people around you, may see a difference in your behaviour. You, or they, may suspect that something is not quite right, but you might not think it is a concerning issue. 

You might not know what to do, where to go or who to see.  Depending on where you live, there may local voluntary groups that you can contact and attend to receive support.  These groups are often called ‘hearing voices groups’ (see links at end of this guide).  Your first point of contact for help many be your family doctor or GP.  They may be interested in gaining a thorough background about your physical and mental health.  It is a good idea to discuss any concerns with your GP as they may be able to offer reassurance, as well as refer you to an appropriate service with higher expertise in the area.  The quicker you seek help, the less time you spend enduring the distress alone.

From the writers’ personal experience, they find it helpful to make a list of what they want to talk about, before seeing their GP; others don’t feel able to do this or prefer not to. Some people find it helpful to take along a relative or friend that they feel comfortable with; whereas others find it more helpful to go by themselves.    

You may continue to be seen by your GP, and you may also be referred to a specialist team, such as the Early Intervention Team or your local Community Treatment Team. Within these teams you might work with a nurse, psychiatrist, social worker or psychologist.

If you require a high level of support, you might have a main professional who is your point of contact for you. This person will ensure you receive the care you need and take the lead in your care. Sometimes people may need to go into hospital for support, if things become too difficult for them to be safely supported at home.

Some people are prescribed medication to reduce the distressing effect of hearing voices and disturbing beliefs. Some people also work with a psychologist using interventions such as Cognitive Behavioural Therapy (changing the way you think, feel and react to the voices and beliefs).  Family Therapists can also sometimes offer support by working with you and your family/carers.

You might be worried what will happen to you and about the treatments you may receive.

It may be helpful to know that:

• Treatment methods have improved. 
• These days people are offered more choice. 
• There is more flexibility and services try and meet your individual needs.
• Not everyone has to go to hospital, this only happens in extreme cases where yourself or other around you might be at risk of harm. 

You may be worried about going into hospital, but remember that:

• The purpose of it is to keep you safe.
• This will be for as short a period as possible.
• You may be offered a range of alternatives, for example aromatherapy, art therapy, occupational therapy and psychotherapy as well as the opportunity to join in discussion groups, breakfast clubs, relaxation sessions and more.  You may also be offered medication.

You may feel you don’t know who to trust

• It may take time to build relationships with the professionals who are helping you.
• It is important to give yourself time to get to know them.
• If you struggle to build a good relationship with a professional after a certain amount of time, then you are able to request another professional.

You may be asked the same questions by people of different professions such as nurses, psychiatrists or psychologists.  Here are some examples:

• How have you been feeling the last few weeks?
• Have you been bothered by feeling down, depressed or hopeless in the last month?
• When did you first experience hearing voices?
• Do you find the voices disturbing?
• Is this something you would like help with?

All this could feel a little overwhelming in the first few hours.  Don’t worry, things do calm down!

Our suggestions are:

• Will I need to go into hospital?
• Who can I talk to when I need support?
• If I do have to go into hospital, when can my family/friends visit?

Once the person you care for is starting to get support from professionals you may experience the following:

• If the person you care for is over 18 years old, you can’t be told anything without their consent.  However, services do have an obligation to help support you as a carer. They can also help by listening to your concerns.
• You may feel that you are being left in the dark.
• You may want to find an answer to why it happened.
• You may find yourself looking back and asking “How did it happen, what did I do wrong”?
• You may wish “to wrap them up in cotton wool” though you know it is important to support them to be independent.
• You may wonder whether to go with them to the GP or not – we suggest you let them decide and support them in the way they feel is most useful.
• Some people find that having a carer there is really helpful when taking part in a hearing voices group or other local voluntary group.
• Although it may be hard, it would be helpful if you can stay calm in their presence, despite you not actually feeling calm.
• Some people find it useful to meet others in the same position.
• Many people find it useful to read more about the experience.

Different people have different ways of understanding what is happening - it may link to things that have happened to you in the past.  Mental health professionals often develop a collaborative explanation of the current issues as well as the reasons behind it (they will call this a formulation).  You might find it beneficial to help them develop a formulation as it allows you to make sense of what is happening.  Keep in mind to avoid rushing to an explanation when you are feeling stressed.

These are some suggestions from the writers’ personal experiences.  When you start hearing voices you may not know of any coping techniques.  Over time, you will gain a better sense of which coping techniques work for you and which do not.

From the writers’ lived experience, they believe that carers need to have a lot of patience.  They can help their relative or friend by:

After a while you and your caring relatives, friends and professionals working with you may start to observe early warning signs of when you might be experiencing distressing voices and beliefs.  From the writers’ personal experience, they found it very useful to learn to recognise early warning signs. 

Each person's early signs will differ.  Some examples of early signs experienced by the writers of this guide have been:

• Being introverted and lacking in conversation.
• Staring into space.
• Sleeping more or less.
• Talking more or less.
• Avoiding activities that you usually like.

The understanding you gain of what has happened to you can help you with moving on in your life.  It is helpful if you believe in yourself and remain hopeful – this helps you to look forward to the future.

Some people find it helpful to read and talk about their experience in order to understand what has happened.  Here are some suggestions that you may find useful.  You may wish to add to it.

• Hearing the Voice – an interdisciplinary study of voice-hearing based at Durham University and funded by the Wellcome Trust. The project website contains useful information about hearing voices, as well as answers to frequently asked questions about voice-hearing and sources of support for people who find their voices distressing.
  www.hearingthevoice.org
  www.hearingthevoice.org/frequently-asked-questions/
  www.hearingthevoice.org/looking-for-support/

• The Hearing Voices Network – the leading peer support and advocacy group for people who hear voices in the UK.
  www.hearing-voices.org
  Email: nhvn@hotmail.co.uk
  Tel: 0114 271 8210
  c/o Sheffield Hearing Voices Network, Limbrick Day Service, Limbrick Road, Sheffield, S6 2PE

• Voice Collective – a London based organisation that provides information, advice and support specifically for young people who hear voices, their families and carers.
  www.voicecollective.co.uk
  Tel: 020 7911 0822

• Intervoice – the international Hearing Voices Movement
  www.intervoiceonline.org

• Useful videos
  Eleanor Longden’s TED talk: ‘The Voices in My Head’
  www.ted.com/talks/eleanor_longden_the_voices_in_my_head?language=en

• SANELine
  Tel: 0300 304 7000
  www.sane.org.uk
  Email: support@sane.org.uk
  Offers practical information, crisis care and emotional support.

• Recovery: an alien concept (3^rd revised edition)
  Ron Coleman
  P&P 2018
  An exploration of the concept of recovery. Attempts to reflect on the past and learn the lessons of history in the psychiatric system, by exploring recovery and encouraging professionals, clients and carers to begin their own personal journeys towards recovery.

• Making sense of voices
  Marius Romme and Sandra Escher
  MIND 2000
  Making sense of voices is a method to explore the problems in the life of the voice hearer that lie at the roots of the hearing voices experience.

• Overcoming distressing voices (2^nd edition)
  Mark Hayward, David Kingdom, Clara Strauss
  Robinson 2018
  Self help guide using techniques to treat long-standing and disabling psychological and physical conditions.

• Working with voices II: victim to victor
  Ron Coleman and Mike Smith
  CreateSpace 2017
  A self-help manual for people who hear voices and those supporting them.

A full list of references is available on request by emailing pic@cntw.nhs.uk

 Share your thoughts with other people and let them know what you think of this guide.

Written by

• Dr Lesley Maunder and Lorna Cameron, Consultant Clinical Psychologists.
• Mair Thomas, Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust
• Members of Northumberland’s Hearing Voices Groups, their caring families and friends.

Many thanks to Catalina Griffiths, Assistant Psychologist and Antonia Newman, Senior Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, who have contributed to the review of this guide.

Also, thanks to Hearing the Voice, an interdisciplinary study of voice-hearing based at Durham University and funded by the Wellcome Trust, who have provided a major contribution to the revision of the guide.

Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust has developed this resource with the support of NHS healthcare staff, service users and local voluntary sector groups.

Published by Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust

2024 Copyright PIC/95/0324 March 2024 V5

Review date 2027