Info for Patients
Misophonia
What is Misophonia?
Misophonia is an extreme emotional reaction to certain everyday sounds that most people would find relatively easy to ignore. The three main types of sounds that disturb individuals with misophonia are eating, nose and throat sounds and repetitive environmental sounds like keyboard tapping and rustling paper.
Whilst many people find these noises annoying, individuals with misophonia describe an intense feeling of disgust, anger, distress or panic that escalates while the sound is still present. This can happen even when the sound is at a very low volume. They report physical sensations similar to a “flight or fight” response, including racing heart, short of breath, tension, feeling hot, and sometimes an unwanted groinal response. They often describe a sense of feeling trapped, helpless and out of control when they can’t get away from these sounds.
"I am filled with an all-consuming and overwhelming rage and hatred for the person sitting there near me sniffing constantly... to the level where you want to rip your own ears off rather than hear the sound anymore.”
- Anna
An individual can be considered to have clinically significant misophonia when it causes frequent distress and has an impact on daily living, work, study and/or relationships. This might include anxious anticipation of sounds before they happen, replaying sounds after the event, feeling guilty or embarrassed about one's own reactions, thinking a lot about the person making the sound, verbal outbursts and avoidance of things one would otherwise like to do (for fear of encountering sounds). They might report low mood, anxiety, sleep problems, family tensions, inability to relax in the home and trouble focusing. At the more severe level, individuals may be unable to work or attend school, have trouble maintaining relationships, feel near constant distress, and may contemplate ending their life. Because misophonia is not well known, people often feel isolated and struggle to get support from family, friends and health professionals.
“There is no escape from the triggers; even home is not a safe place. I have often been suicidal myself. Misophonia has the potential to be life threatening.”
- Andrea
There are many individual differences in the experience of misophonia, demonstrating the complexity of the condition. Some people tell us they react more strongly to sounds made by those close to them, others are more impacted by the sounds made by strangers. Some have been bothered by these sounds for as long as they can remember, others recall a particular time where their reactions to sounds got a lot worse and some can pinpoint a particular event when their sound sensitivity suddenly developed. While one person might react to a wide range of sounds, another might only be affected by one specific sound. Some may react in certain circumstances, but the same noise may not bother them at other times. Many individuals with misophonia also report that they also react to repetitive movement (misokinesia), such as leg shaking, fidgeting or blinking lights.
“Misophonia is the most debilitating, lonely place to be in.”
- Wendy
Severity of misophonia is measured based on the level of distress it causes and the impact it has on an individual’s life.
This description of misophonia was written in consultation with a misophonia support group on social media.
Can treatment help?
There is some evidence that cognitive behavioural therapy (CBT) can be helpful for people with misophonia. It is likely to be especially helpful for those with more severe misophonia that significantly disrupts daily living or causes distress on most days.
We think at the core of misophonia is a variation in sensory processing, which includes heightened attention to certain sounds that could be a sign of potential contamination (e.g. illness from breathing through a blocked nose, spreading illness through spit when eating with mouth open) or a potential “predator” (e.g. footsteps, tapping and rustling sounds). This is the part that might not be able to change with therapy.
However, therapy may be helpful for with more severe misophonia, for example those whose reaction feels like a "flight or fight” type feeling, or if they feel trapped, panicked or helpless around sounds. In particular, therapy can help if the impact of the sound exists even when the sound is not present (e.g. taking a long time to “wind down” from a reaction, worrying about sounds in advance or having lasting impacts on work or relationships). Therapy may also be helpful for those with co-existing conditions that cause misophonia to be worse (or is made worse by misophonia).
Aims of treatment
The main aims of CBT for misophonia are to reduce the intensity of the reactions to sounds and to minimise the impact that sounds have on the person’s life. Because misophonia is influenced by the individual’s past experiences, current circumstances, beliefs and personality, there is not one set protocol for therapy.
We will aim to:
• Develop a shared understanding of the problem, including the beliefs that “feel true” in the moment and what you do in response to those beliefs
• Use the S-Five, a questionnaire for misophonia, to understand the complexities of misophonia and to monitor your progress across sessions
• Set some goals together about what the person would like to change
• Design experiments and test out ideas
• Exercises to shift those felt-sense beliefs that you suspect may not reflect reality
• Strategies to better identify and understand your emotions
• Identifying possible links between your current feelings and past experiences, and processing any relevant memories
• Using imagery (and humour) to reducing the intensity of the reaction to sounds
• Reclaiming your time when there are no sounds present
• Processing and letting go of anger
• Developing tools for communicating with important people in your life to support you with your sound sensitivities
• Identifying and problem solving any other issues that might be exacerbating your reactions to sounds
• Working out suitable accommodations to minimise the impact of sounds on living a fulfilling and contended life
OHPSIC will liaise with local teams to ensure that the work on overcoming misophonia can successfully continue, including offering joint work and supervision, as necessary. Home visits or out of office sessions will be included and encouraged as part of joint work with local teams.
Information for people interested in accessing treatment at the Centre and those who already have a referral
Welcome
We hope to provide useful information about Oxford Health Specialist Psychological Intervention Centre (OHSPIC). We are keen that you have as much information as you feel you’d like about the particular problem you are experiencing and the treatment options available to you. Below we describe the types of problem the Centre is able to help with, the psychological therapy it is able to offer, and what an assessment at the Centre would be like. We also include a guide to the administrative/funding stages in seeking a referral, assessment and treatment at the Centre.
This guide has been written jointly by staff members and people who have accessed psychological services in the past.
How the Centre was set up
Professor Paul Salkovskis is a cognitive behavioural therapist and consultant clinical psychologist, and Director of the Clinic. Paul moved to Oxford in 2018 as director of the Centre for Psychological Health which incorporates the clinic, the Institute for Clinical Psychology Training and Research and the Oxford Cognitive Therapy Centre. You may know that cognitive behavioural therapists offer evidence based and empirically grounded psychological therapies, and do not prescribe medication (although they may work alongside medication). Previously Paul was Clinical Director of the Centre for Anxiety Disorders & Trauma at the Maudsley Hospital in London, and the Specialist Anxiety Disorders Clinic at the University of Bath and Avon and Wiltshire NHS Trust.
Alongside his teaching and research work Paul works clinically himself, and supervises members of the OHSPIC staff in their clinical work.
What sort of problems can the Centre help with?
Please click on to each problem for further information about the type of treatment we provide:
Anxiety problems, including
• OCD
• Hoarding
• Panic disorder – with and without agoraphobia
• Health Anxiety
• Social Anxiety Disorder
• Emetophobia
and
• Post Traumatic Stress Disorder and Complex Trauma.
• Information about treatment for children and young people.
We will consider looking at other problems on a case to case basis.
The Centre will concentrate on treating anxiety-related problems including obsessive compulsive disorder (OCD), hoarding disorder, emetophobia (fear of being sick and the consequences of being sick), panic disorder, heath anxiety, phobias and social anxiety. We will also see people with problems related to trauma and PTSD. Also, the problems listed above during the perinatal period. These categories are broad and quite often we will work with people with multiple and difficult to define problems.
The people we see have usually accessed local services previously but for whatever reason the treatments they have been offered have not helped, or not in a lasting way. We offer people psychological therapies recommended by the NICE (National Institute for Health and Clinical Excellence) guidelines for their particular problem. We also offer advanced treatments including intensive and “outreach” (e.g home based) treatment consistent with NICE guidelines. You may know that NICE is the scientific body that advises the health service about treatment. This usually involves offering a specialist course of cognitive behavioural therapy (CBT) specifically designed for the problem you are experiencing. distinct specialist CBT programmes have now been developed for each of the anxiety disorders.
It is very common for people to have more than one problem. And each person’s story and situation is unique. Working alongside you we would seek to understand the problems you are experiencing and develop a psychological treatment programme specific to your individual needs.
For some people that we work with their problems can be so severe that they feel distressed to the extent they feel like harming themselves. Although we aren’t able to offer emergency/crisis support services, if we have any concerns regarding your safety at any point we would discuss this with you and work in collaboration with you and your care team so that you can access crisis support services in your local area.
Who can be referred to the Centre?
We accept referrals made by any NHS health professional for any person within the United Kingdom who is experiencing an anxiety problem. There are no age or location restrictions, nor do we have any requirements for people to have tried any particular course of psychological or medical intervention previously.
Often the people we see have tried many things before but we don’t make this a condition for being accepted for treatment in the clinic.
It is important to remember, however, that funding authorities are likely to consider these factors when deciding whether to fund referrals or not. Each funding authority has their own local criteria for funding treatment and usually require that people have accessed local mental health services in the first instance.
What would an assessment be like?
In the assessment we aim to learn from you as much as we can about the problems you are experiencing so that we can find out together whether the therapy the Centre could offer would be appropriate for you. There would be ample opportunities for you to discuss your particular problem and the treatment options available to you. Please feel free to ask anything you would like to know about the Centre and the approach we take.
We would ask if you could kindly fill out a number of clinical questionnaires before the day of your assessment. These questionnaires add to what you tell us during the assessment session. They help us understand more about the specific problems you are experiencing and how severely they are affecting your everyday life. We will of course share and discuss with you what we learn from the questionnaires.
A typical assessment appointment will be approximately 2-3 hours in duration.
While the assessment process can be quite emotionally tiring, we hope that you will come away from it feeling that you have been understood and listened to with respect and kindness, that you and the therapist have been able to explore your problem in depth, and that you have a better understanding of your problem and the treatment options available to you, including the treatment that we could offer you at the Centre if this is appropriate.
Flexible delivery of assessment and treatment
One important feature of the specialist psychological treatment offered by the Centre is that it is flexible. For example, most people attending the Centre travel to the Oxford for their assessment. But if your problem makes it impossible for you to leave your home and meet us in Oxford then we may be able to meet you at your home, or local NHS setting, for example. When people get to the treatment stage some people prefer to have their CBT sessions in a traditional format e.g. weekly or fortnightly. But we can also offer the same number of CBT sessions in a more intensive format e.g. with all sessions taking place within a two to three week time period. Different people find different modes helpful. Some people choose to do a combination of both.
We are keen to conduct assessment and treatment sessions in the place that will help people most, providing the maximum benefit. People often tell us that they have previously received treatment in a traditional therapy room context, and although often finding this very helpful, it has been a real struggle to implement this useful work in the environment where they experience the problem most severely. It is precisely these environments and contexts where we aim to be present and support you in putting the ideas from therapy into practice. Often, this means that what we are able to offer is intensive sessions in the most relevant treatment context.
We sometimes get asked if we have an in-patient unit, which typically are clinics where people stay on a hospital ward for a few weeks and receive treatment in this environment. Although this can be very helpful for people, it is not a treatment option that we provide.
Referral, assessment and treatment: a guide to the administrative/funding stages
As an NHS clinic there are no fees to be paid by you to receive treatment. However, due to us being a specialist clinic which is part of Oxford Health NHS Foundation Trust, we can only offer assessment and treatment appointments when funding for both of these has been agreed by the relevant organisation in your region. We are still becoming familiar with the changes brought about by the reorganisation of the NHS, but referrals in England require funding by what is known as a Clinical Commissioning Group (formerly Primary Care Trust), but this differs in Wales, Scotland and Northern Ireland. We are aware that seeking a referral to a specialist Centre can feel quite a daunting, complex process but your GP or mental health professional will know or be able to find out what the local processes are to apply for funding to receive support from us.
Reminder: Each funding authority will have their own criteria for making referrals to specialist treatment centres like ours. However, it is often the case that funding authorities will require that you have accessed appropriate local mental health services before consideration of referral to our clinic.
To hopefully make things seem a little clearer and a little less daunting we have put together the following guide to the administrative/funding stages involved in seeking a referral, assessment and treatment at the Centre. A similar guide will be made available for referrers.
Information regarding assessment and treatment at the clinic
1. The first step
The first step in being referred to the clinic is to meet with an NHS health professional (this could be your GP, an OT, a psychologist etc.) with whom you feel comfortable talking with to discuss your problems and asking them to make a referral to see us for an assessment. They may not know about the processes and procedures of making a referral to us, so feel free to take this leaflet with you and let them know that they can contact us for further information.
Typically, the referral letter to us would provide information on how your problem is currently affecting you and the impact it is having upon you as well as providing any further relevant background such as previous psychological and pharmacological treatment received. They would then send this referral letter to the email address below:
On receipt of the referral we read through it and make a decision about whether we could offer anything to help, which we often think we can. We then write to the referrer to advise them about making a funding application for assessment and we would also send you a copy of this letter, and any other correspondence relating to your referral. We would then advise that you meet with the referrer to both initiate and check on the progress of this funding application. Please note that if you think that you’d be travelling to see us for the assessment in Oxford and you would want to reclaim travel expenses you should also discuss this with the referrer so that they can include it in the funding application.
2. The Assessment
Once we’ve been informed that funding has been agreed we aim to meet up with you within eight weeks for the assessment, but sometimes it can take considerably longer to arrange an assessment, depending upon how many people we’ve been asked to assess. Assessments are typically 2-3 hours in duration and as mentioned above, these are usually at our premises in Oxford, but often we see people in their home environments when they are not able to travel or where we feel we would learn more about the problem by seeing them in their homes.
When you come to the assessment it is important to remember that there is no guarantee that treatment will follow; although we may recommend a course of therapy, it is the local funding authority that makes the decision on whether to fund our recommendations or not.
In the assessment our main aim is to work with you to understand your current experience of the problem and a little about how it developed. Crucially we hope to understand the factors that are keeping you feeling stuck in relation to the problem, particularly those things that have not been covered in or benefited from previous treatments.
We will then write a report, usually within three weeks of the assessment, and then a copy of this would be reviewed with you before then sending it to your referrer and also to you if would like to receive a copy. The report will provide details of our understanding of the development and maintenance of the problem, including our recommendations to address the difficulties. This will include an approximate number of sessions and how these would be delivered if funding was agreed for us to provide the treatment.
To avoid any delays we recommend that once you’ve received a copy of the report from us that you meet with the person who referred you and discuss the report with them. If you and the referrer decide to seek funding for treatment at the clinic then we’d advise keeping in contact with them at regular intervals to check on the progress of the application.
3. Starting treatment
Currently treatment appointments are usually offered within eight weeks of receiving written confirmation of treatment funding. However, this will vary according to the number of funded referrals we receive and in more complex cases it may be longer than eight weeks. Depending upon the treatment plan, sessions are delivered singly and/or in multiples (i.e. intensively) and at a range of locations which can include the clinic and your home.
As a specialist psychological treatment service, we can discuss medication options with local services but this is not our primary role. We do, however, invite patients and referrers to have a look at the Oxford Health Foundation Trust medication website which provides a useful overview of options regarding medication www.choiceandmedication.org/oxfordhealth
We will review the treatment with you at regular intervals to discuss the progress of the work and make changes to the approach as required. We also provide a brief update to the funder of the treatment and make recommendations for additional sessions to those already funded as required.
4. Ending treatment
Towards the end of treatment you and your therapist will begin to reflect on the work that you’ve completed together, which will include developing a plan to continue the therapeutic work beyond the sessions. You and your therapist will agree a date for the last session and the therapist will write a letter to you summarising the work that you have developed together and this would ordinarily also be sent to the person that referred you.