The treatment of. post-traumatic stress disorder (PTSD) in adults and children

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1 The treatment of post-traumatic stress disorder (PTSD) in adults and children Understanding NICE guidance information for people with PTSD, their advocates and carers, and the public The paragraphs are numbered for the purposes of consultation. The final version will not contain numbered paragraphs. November 2004 (November 2004) Page 1 of 21

2 Contents Contents...2 About this information...3 Clinical guidelines...3 What the recommendations cover...4 How guidelines are used in the NHS...4 What is PTSD?...6 Where can I find help and treatment?...7 What treatments are available for PTSD?...9 Will I be offered psychological treatment?...10 Is psychological treatment suitable for everyone with PTSD?...11 What happens if I don t feel any better after psychological treatment?...11 Will I be offered medication?...12 What kind of medication can be used to treat PTSD?...12 What should I know about the medication?...13 How long should I take the medication?...13 What happens if the medication prescribed has not helped me?...14 Can medication help me with sleep problems?...14 I have other illnesses or problems besides PTSD. Will this affect my treatment for PTSD?...15 Will the fact that I am seeking compensation because of a traumatic event affect my treatment?...16 Will I be offered any other kind of help?...16 What treatments are available for young people?...17 Information for families and carers...18 How can I support a family member with PTSD?...18 How can I find support for myself?...18 Where you can find more information...19 If you want to read the other versions of this guideline...19 If you want more information about PTSD...20 If you want to know more about NICE...20 Glossary...21 (November 2004) Page 2 of 21

3 About this information 1 This information describes the guidance that the National Institute for Clinical Excellence (called NICE for short) has issued to the NHS on the treatment and care of people with post-traumatic stress disorder (PTSD). It is based on Post-traumatic stress disorder (PTSD): the management of PTSD in adults and children in primary and secondary care, which is a clinical guideline produced by NICE for doctors, nurses and others working in the NHS in England and Wales. Although this information has been written chiefly for people with PTSD, it may also be useful for family members, those who care for people with PTSD and anyone interested in PTSD or in healthcare in general. 2 In this document the term PTSD sufferer is used to describe someone with PTSD. This term was chosen on the basis of a survey conducted by members of the group who wrote the NICE guideline who have PTSD. Clinical guidelines 3 Clinical guidelines are recommendations for good practice. The recommendations in NICE guidelines are prepared by groups of health workers, people representing the views of those who have or care for someone with the condition, and scientists. The groups look at the evidence available on the best way of treating or managing the condition and make recommendations based on this evidence. 4 There is more about NICE and the way that the NICE guidelines are developed on the NICE website (www.nice.org.uk). You can download the booklet The guideline development process an overview for stakeholders, the public and the NHS from the website, or you can order a copy by phoning the NHS Response Line on (quote reference number N0472). (November 2004) Page 3 of 21

4 What the recommendations cover 5 NICE clinical guidelines can look at different areas of diagnosis, treatment, care, self-help or a combination of these. The areas that a guideline covers depend on the topic. They are laid out in a document called the scope at the start of guideline development. 6 The recommendations in Post-traumatic stress disorder: the management of PTSD in adults and children in primary and secondary care, which are also described here, cover: 6.1 the care you can expect to receive from your GP or other healthcare professional 6.2 the information you can expect to receive about your condition and its treatment 6.3 what treatment you can expect, which may include psychological therapies and drug treatment 6.4 the services that may help you with PTSD including specialist mental health services. 7 The information that follows tells you about the NICE guideline on PTSD. It doesn t attempt to explain it or the treatments in detail. NHS Direct is a starting point to find out more and has some information on some of the medical conditions that may be involved. Phone NHS Direct on or visit the website at 8 If you have questions about the specific treatments and options covered, talk to your doctor or nurse (or another health professional, depending on what it is you want to know). How guidelines are used in the NHS 9 In general, health workers in the NHS are expected to follow NICE s clinical guidelines. But there will be times when the recommendations won t be suitable for someone because of his or her specific medical condition, general health, wishes or a combination of these. If you think (November 2004) Page 4 of 21

5 that the treatment or care you receive does not match the treatment or care described on the pages that follow, you should talk to your doctor, nurse or other health professional involved in your treatment. 10 You have the right to be fully informed and to share in making decisions about your healthcare, and the care you receive should take account of your individual needs. (November 2004) Page 5 of 21

6 What is PTSD? 11 Post-traumatic stress disorder (or PTSD for short) is the name given to the psychological and physical problems that can sometimes follow particular threatening or distressing events. These events might include: a major disaster war rape or abuse witnessing a violent death a serious accident traumatic childbirth other situations in which a person was very afraid, horrified, helpless, or felt that his or her life was in danger. 12 PTSD may affect the person directly involved in a traumatic event or situation, or it may develop in members of the emergency services or families of those involved in a traumatic event. PTSD is quite common and can develop in people of any age, including children. 13 One of the most common symptoms of PTSD is the feeling of reliving (or reexperiencing ) the event through flashbacks (sudden, vivid memories) or nightmares. This can be very distressing and disorienting and can cause physical reactions, such as shaking and sweating. Because of the intensity of the memory, some PTSD sufferers will avoid people or situations that remind them of the traumatic event, and try to push the memories out of their mind, and avoid talking about it. Other people, however, will think about the event all the time in a way that stops them from coming to terms with it; they may ask themselves why the event happened to them or how it could have been prevented. Sometimes they will feel distant from other people, as if they do not have any emotions; they may also forget significant parts of the traumatic event. Others may have emotions or feelings that are difficult to deal with, (November 2004) Page 6 of 21

7 such as feeling guilty or ashamed, or that they do not deserve help. People with PTSD may also feel anxious, irritable, and find it difficult to concentrate and to sleep. 14 It is quite usual to experience very distressing symptoms in the first few weeks after a traumatic event, and sometimes these feelings pass after a few weeks or so. Some people may not have a reaction for months or even years after. If the feelings and reactions last a long time or get worse a person may be said to have PTSD. For some people it can mean that doing ordinary things like going to work or school or going out with friends becomes very difficult. The feelings associated with PTSD can be very upsetting and confusing, but it is not at all uncommon to feel like this after a very distressing event. 15 Some people may have other problems besides PTSD. For example they may be depressed, which is quite common. Some people could start to use drugs or alcohol as a way to cope especially if they have experienced trauma or have had PTSD over a long period of time. 16 If you have these problems as well as PTSD or have PTSD on its own, these conditions can be successfully treated. Please see below for details about treatments. Where can I find help and treatment? 17 If you have experienced a trauma recently or some time in the past and are having distressing symptoms, your GP is the best place to start. When you first go to see your GP, he or she will want to find out about your general health, how life is at home, school or work, and about how you are feeling. If you are able to, it is important to talk to your doctor as openly as you can about how you are feeling. (November 2004) Page 7 of 21

8 18 If you see your GP shortly after a traumatic event and you have some distressing symptoms he or she may advise you not to be too alarmed because it is very common to feel like this. Your GP should arrange to see you again after 3 or 4 weeks. (If you are not offered a further appointment it is advisable to go back to your doctor if you are not feeling any better.) If your symptoms are very severe, however, your GP may offer you treatment straight away. 19 If you are told that you have PTSD, your GP should give you clear information about the common reactions to traumatic events, including the symptoms of PTSD, how it starts and how it can be treated. 20 If your GP thinks that you need further treatment, you may be referred to someone who is trained and skilled in providing treatment for PTSD sufferers (this may be a counsellor, a community psychiatric nurse, a psychologist, or a psychiatrist). Ideally you should receive treatment from one healthcare professional, but if you see more than one person about your PTSD, there should be a clear agreement about who is making sure that you are being properly looked after. 21 All healthcare professionals should treat you with respect, sensitivity and understanding, and explain PTSD and the treatments to you simply and clearly. 22 Information for refugees and people whose first language is not English If your first language is not English, you should still be offered the same standard of care as any other patient, and told about all the treatments available to you. You should be offered an interpreter if you need one and the healthcare professional treating you should be sensitive to your cultural needs. (November 2004) Page 8 of 21

9 23 Questions you might like to ask healthcare professionals about PTSD: Can you tell me if all my problems are because of PTSD? What kind of treatment do you think I need? Do I have any choice in the kind of treatment I am going to get? How long do you think I will need treatment for? Can you provide some information for my family? If you are having trouble sleeping you might want to ask your healthcare professional for some specific advice about this. What treatments are available for PTSD? 24 There are a number of treatments for PTSD that are helpful. Most involve some kind of psychological treatment but medication can also help. 25 Many PTSD sufferers have had the symptoms for many months and sometimes years. The success of treatment will not be affected by the length of time you have had PTSD. Treatment can still be helpful if you have had the symptoms for a long time. If you have recently developed symptoms you may get better with little or no treatment. 26 You should be given enough information about the treatments for PTSD so that you can make a decision about whether or not you want to have treatment, and which treatment you might prefer. The healthcare professional should take account of your choice when helping you to decide on which treatment will help. This information should be clear and in a language you can understand. (November 2004) Page 9 of 21

10 Will I be offered psychological treatment? 27 Depending on what your symptoms are and when you developed PTSD, you may be offered a type of psychological treatment that has been specifically designed to help PTSD sufferers including: trauma-focused cognitive behavioural therapy (CBT), and eye movement desensitisation and reprocessing (EMDR). 28 You can find out more about trauma-focused CBT and EMDR in the Glossary at the end of the booklet. 29 A course of treatment is usually started at least 1 month after the traumatic event, and is likely to take between 8 and 12 sessions (although this depends on how you are feeling). If your symptoms are very severe you could start treatment soon after the trauma. This might take just 4 or 5 sessions. Sometimes if you had many traumas, experienced the traumatic death of a relative or friend, or have a long-term disability or other problems as a result of trauma, it might be necessary to have more than 12 sessions of treatment. 30 Sessions should take place at regular intervals. Ideally you should be treated by the same person, who should be appropriately trained in giving the treatment. (You may wish to ask them what experience they have.) 31 In the sessions the person treating you will want to know about your memories of the trauma. You can expect your healthcare professional to understand that it will be difficult and stressful for you to talk about the trauma, and that he or she will offer support so that the treatment does not become overwhelming for you. When the trauma itself is discussed in the meeting, you may be offered a slightly longer session (of about 90 minutes). If you miss an appointment your healthcare professional may contact you to see how you are feeling and ask why you didn t go. (November 2004) Page 10 of 21

11 32 You should not usually be offered treatments on their own that have not been designed for people who have experienced trauma, such as relaxation, hypnotherapy, supportive therapy, non-directive therapy, systemic psychotherapy or psychodynamic therapy. Is psychological treatment suitable for everyone with PTSD? 33 This largely depends on when the traumatic event occurred, when you developed PTSD, and how bad you are feeling. But psychological treatments designed for PTSD sufferers have been shown to be an effective way of helping people to feel better. 34 However, if you have been in a major disaster, you should NOT normally be offered a single session of psychological therapy (often called de-briefing ) immediately after the event because research shows that this is not very helpful and in some cases could make you feel worse later on. Instead, you should be offered practical support and advice about how to cope over the following weeks. Healthcare professionals may offer you treatment in the first 4 weeks after the trauma if your symptoms are very severe, but will usually wait and see how you are after a month has passed before starting anything. What happens if I don t feel any better after psychological treatment? 35 If you have had some treatment over a period of time and are not feeling any better, there are other options. For instance, your healthcare professional may suggest trying a different kind of psychological treatment, or offer you a course of medication while you are having the therapy (see below). 36 Questions you could ask your healthcare professional about psychological treatment: I had expected to be better by now. Can we discuss how I am getting on? (November 2004) Page 11 of 21

12 Do you think we need to look at alternative types of treatment or do you think we need to extend the period of treatment? The treatment is helping a bit but I still find some problems very difficult to cope with. Can we discuss how I can deal with these problems? Will I be offered medication? 37 Medication may help to treat PTSD in adults but for most people it is not as helpful as the right kind of psychological treatment. So healthcare professionals should usually offer you psychological treatment before they offer you medication. However you may also be offered medication if: you would prefer not to have psychological treatment, or it would be very difficult for you to start a psychological treatment because you are still exposed to the threat of further trauma (for instance, violence at home), or psychological treatment has not helped you. 38 You may be offered medication in addition to psychological treatment if the psychological treatment is not helping you or if you are also depressed (see below). What kind of medication can be used to treat PTSD? 39 The medication offered should be an antidepressant because, even if you are not suffering from depression, this type of medication has been shown to help people with PTSD. There are different types of antidepressants, but research has shown that the following can be effective for PTSD sufferers: paroxetine (a selective serotonin reuptake inhibitor, or SSRI) mirtazapine (an newer kind of antidepressant) amitriptyline (a tricyclic antidepressant) (November 2004) Page 12 of 21

13 phenelzine (a monoamine oxidase inhibitor, or MAOI). What should I know about the medication? 40 Before starting antidepressant medication your healthcare professional should give you good information about possible side effects. You should be told that there is a risk of symptoms such as restlessness, anxiety, agitation and thoughts about suicide when first taking antidepressants, particularly SSRIs. If you experience any of these side effects and they are at all distressing, you should tell your healthcare professional immediately, who should review the medication. 41 Whichever medication you are taking, you should be told that you might experience unpleasant symptoms when you stop the medication (see below), miss doses or reduce the dose (this can sometimes be the case with paroxetine). These symptoms are usually mild, but can sometimes be severe. 42 If you are prescribed an antidepressant, your healthcare professional should usually see you 2 weeks after starting the medication and after that on a regular basis (this will depend on how you feeling, but should usually be every 2 to 4 weeks in the first 3 months, and then less frequently after that). This is to make sure that the medication is helping you and not causing any major side effects. If you are aged between 18 and 29 years of age you should usually be seen 1 week after starting an antidepressant, and then regularly after that. If you have had suicidal thoughts and are thought to be at risk, you should also been seen after 1 week and then regularly after that. How long should I take the medication? 43 If the medication has been helpful, you should be encouraged to continue with the treatment for about 12 months. After this period the medication can be gradually reduced over 4 weeks and then stopped (for some people it may take longer). You may have a few mild symptoms when stopping the (November 2004) Page 13 of 21

14 medication. If this happens, your healthcare professional should assure you that this is not uncommon and check that your symptoms are not getting worse. 44 If you experience severe problems while reducing your medication, your healthcare professional might try you again on the original dose or on another kind of antidepressant similar to the one you had been taking, and reduce again more gradually while monitoring your symptoms. What happens if the medication prescribed has not helped me? 45 If the medication has not been helpful, generally your healthcare professional should consider another kind of antidepressant medication or offer you a medicine called olanzapine in addition to your current medication. Can medication help me with sleep problems? 46 If you are having trouble sleeping the healthcare professional may consider offering you medication. This should usually be an antidepressant (particularly if you experienced the trauma within the past 3 weeks), but the healthcare professional may consider other alternatives to help you in the short term. 47 If you are offered antidepressant medication you might want to know more about it and so you could ask one or more of the following questions: How will the medication help me and how long will it take before I start to feel better? How long will I have to take antidepressant medication? -Will it be easy to stop taking antidepressant medication? 48 You should be informed about the side effects associated with antidepressants. If you are unsure, you might consider asking the following questions: (November 2004) Page 14 of 21

15 Does this medication have any side effects that could affect my physical or mental health/daily life? What should I do if I get any of these side effects? How long do the side effects last? I have other illnesses or problems besides PTSD. Will this affect my treatment for PTSD? 49 If you have PTSD and also have depression you will be offered treatment for both. Usually the PTSD will be treated first, because depression often improves as the symptoms of PTSD improve. However, if you have severe depression, the depression will usually be treated first. 50 If healthcare professionals think that you may be at risk of harming yourself or others, they will take great care to try and deal with this problem first to make sure you are safe. 51 If you are taking a lot of drugs and/or alcohol, this may affect treatment of PTSD so healthcare professionals will usually treat the drug or alcohol problem first. 52 Sometimes if you have a lot of other personal and relationship problems that have been around for a long time you should still be offered trauma-focused psychological treatment but you may receive treatment for longer than eight sessions. 53 If you are have lost a family member or friend due to an unnatural or sudden death your emotions may be overwhelming (this is sometimes called traumatic grief ). If you think you have PTSD it is best to see your GP. Your (November 2004) Page 15 of 21

16 GP should also be able to advise you about professionals who have training and experience in this area. Will the fact that I am seeking compensation because of a traumatic event affect my treatment? 54 No, healthcare professionals should not usually delay treatment or refuse to treat you because you are seeking compensation as a result of the traumatic event. Will I be offered any other kind of help? 55 PTSD can have a great effect on a person s everyday life. Healthcare professionals should recognise that you may need further practical and social support and provide advice so that you can get this kind of help. (November 2004) Page 16 of 21

17 What treatments are available for young people? 56 If you are under the age of 18 you may be offered a psychological treatment for PTSD called trauma-focused cognitive behavioural therapy (CBT) (for more information see the Glossary at the end of the booklet). This involves talking to a healthcare professional about how you are feeling and what happened to you. It can be upsetting to talk about these things so you should only start this treatment when you feel ready. If you feel very upset when talking to a healthcare professional, he or she should try to understand and help you to take things slowly. 57 You can receive this treatment if you have had PTSD for a short time or for a longer time, although it does depend on how you are feeling. If you have developed PTSD recently (within the last month) you will usually see a healthcare professional at least 4 times (once a week), and each meeting should last for about an hour and a half. If you have had PTSD for many months or even years you should see a healthcare professional for more sessions (usually between 8 and 12 times at least once a week). When you talk about what happened to you, the meeting should last for about an hour and half. The same person should see you for all of your meetings. 58 Usually, it is important that you receive most of your treatment on your own with the healthcare professional. However if the healthcare professional thinks it might help, he or she might suggest that your family or carer is involved in your treatment. This should be agreed with you before it happens. 59 Healthcare professionals should tell you (and a member of your family) that at the present time it is usually only psychological treatments that are specially designed for PTSD that can help people with their feelings. There is (November 2004) Page 17 of 21

18 little evidence that other treatments (such as play therapy, art therapy and family therapy) can help young people with PTSD. 60 You should not usually be offered medicines to treat your PTSD. Information for families and carers How can I support a family member with PTSD? 61 As a family member or a carer you can have an important role in supporting someone with PTSD both practically and emotionally. If it is appropriate and the PTSD sufferer consents, healthcare professionals should give you full and clear information about the common reactions to traumatic events, including the symptoms of PTSD and its course and treatment so that you can understand the condition. Healthcare professionals should also inform you about self-help groups and support groups that may be helpful for you. How can I find support for myself? 62 Supporting a person with PTSD may be quite distressing. You may have your own reactions to what has happened, or you might not know what to do for the best to help the person with PTSD. If you need further help healthcare professionals should be sympathetic and understanding. They should offer you further information about support groups and voluntary organisations if you need it. You can find useful information about the important role of carers from the following website: 63 It is not uncommon for other members of the family to suffer from PTSD as well. You and other members of your family may have been directly involved in a traumatic event (like a car accident, for example), or you may have PTSD as result of the death, or near death of a relative. If this is the case, (November 2004) Page 18 of 21

19 healthcare professionals should make sure your care and treatment addresses the needs of the whole family. Where you can find more information 64 If you need further information about any aspects of PTSD or the care that you are receiving, please ask your doctor, nurse or other member of your healthcare team. You can discuss the NICE guideline on PTSD with them, especially if you aren t sure about something in this booklet. If you want to read the other versions of this guideline 65 There are four versions of this guideline: this one the full guideline, which contains all the details of the guideline recommendations, how they were developed and information about the evidence on which they were based a version called the NICE guideline, which lists all the recommendations on PTSD the quick reference guide, which is a summary of the main recommendations in the NICE guideline. 66 All versions of the guideline are available from the NICE website (www.nice.org.uk). This version and the quick reference guide are also available from the NHS Response Line phone and give the reference number(s) of the booklets you want (N0XXX for this version, N0XXX for this version in English and Welsh, and N0XXX for the quick reference guide). (November 2004) Page 19 of 21

20 If you want more information about PTSD 67 NHS Direct may also be a good starting point for finding out about PTSD. You can call NHS Direct on or visit the website at 68 There may be support groups for people with PTSD in your area. Your doctor or nurse should be able to give you more details. Information about local groups may also be available from NHS Direct or your local library or Citizens Advice Bureau. If you want to know more about NICE 69 For further information about the National Institute for Clinical Excellence (NICE), the Clinical Guidelines Programme or other versions of this guideline (including the sources of evidence used to inform the recommendations for care), you can visit the NICE website at At the NICE website you can also find information for the public about other guidance in the following areas: [Insert details of other relevant publications where appropriate] These can also be ordered from the NHS Response Line (phone ). (November 2004) Page 20 of 21

21 Glossary 70 CBT (cognitive behavioural therapy): a psychological treatment based on the idea that our feelings, thoughts ( cognitions ) and behaviour are related. CBT can aim to change a person s distressing feelings by changing their thoughts or behaviour. CBT has been adapted to help people with PTSD; the treatment looks at common reactions to trauma. 71 EMDR (eye movement desensitisation and reprocessing): a treatment that helps people with PTSD to cope with the memory of a traumatic event and to think more positively about the experience. Patients are asked to concentrate on an image connected to the trauma and to bring the negative emotions, sensations and thoughts to the forefront of their minds, while looking and following the therapist s fingers as they move back and forth in front of their eyes. After each set of eye movements (about 20 seconds), patients are instructed to let go of the memory and to discuss the images and emotions they experienced during the eye movements with the therapist. This process is repeated, this time with a focus on different memories. Once they feel less distressed about the image, patients are asked to focus on it while thinking about something positive relating to the image. (November 2004) Page 21 of 21

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