PubMed Health. A service of the National Library of Medicine, National Institutes of Health.

National Collaborating Centre for Mental Health (UK). Generalised Anxiety Disorder in Adults: Management in Primary, Secondary and Community Care. Leicester (UK): British Psychological Society; 2011. (NICE Clinical Guidelines, No. 113.)

4EXPERIENCE OF CARE

4.1. INTRODUCTION

This chapter provides an overview of the experience of people with GAD and other anxiety problems, and their families/carers. The first section comprises first-hand personal accounts written by people with GAD and other anxiety problems and carers; the accounts provide some experiences of having a diagnosis of GAD, accessing services, having treatment and caring for someone with an anxiety problem. It should be noted that these accounts are not representative of the experiences of people with GAD and therefore can only ever be illustrative. The second section of the chapter includes a review of the qualitative and quantitative literature, which provides a basis for the recommendations, which appear in the final section.

4.2. PERSONAL ACCOUNTS – PEOPLE WITH GENERALISED ANXIETY DISORDER

4.2.1. Introduction

The writers of the personal accounts were contacted primarily through the service user and carer representatives on the GDG and through various agencies that had access to people with GAD and other anxiety problems. The people who were approached to write the accounts were asked to consider a number of questions when composing their narratives. These included:

  • When were you diagnosed with GAD and how old were you?
  • How did you feel about the diagnosis? How has your diagnosis affected you in terms of stigma and within your community?
  • Do you think that any life experiences led to the onset of the condition? If so, please describe if you feel able to do so.
  • When did you seek help from the NHS and whom did you contact? (Please describe this first contact.) What helped or did not help you gain access to services? If you did not personally seek help, please explain how you gained access to services.
  • What possible treatments were discussed with you?
  • Do you have any language support needs, including needing help with reading or speaking English? If so, did this have an impact on your receiving or understanding a diagnosis of GAD or receiving treatment?
  • What treatment(s) did you receive? Please describe both drug treatment and psychological therapy.
  • Was the treatment(s) helpful? (Please describe what worked for you and what didn’t work for you.)
  • How would you describe your relationship with your practitioner(s)? (GP/community psychiatric nurse/psychiatrist, and so on.)
  • Did you use any other approaches to help your GAD in addition to those provided by NHS services, for example private treatment? If so please describe what was helpful and not helpful.
  • Did you attend a support group and was this helpful? Did any people close to you help and support you?
  • How has the nature of the condition changed over time?
  • How do you feel now?
  • If your condition has improved, do you use any strategies to help you to stay well? If so, please describe these strategies.
  • In what ways has GAD affected your everyday life (such as schooling, employment and making relationships) and the lives of those close to you?

Each author signed a consent form allowing their account to be reproduced in this guideline. Six personal accounts from people with GAD were received in total. The majority of individuals who provided an account experienced long-standing anxiety symptoms and often a delay in obtaining a diagnosis of GAD (which may have been compounded by co-existing mental health problems or misrecognition of their anxiety symptoms). However, once diagnosed most expressed a sense of relief. Most individuals also reported adverse impacts on many areas of their lives, particularly on relationships, self-esteem, social interaction, employment and education. Limitations placed on life choices were also commonly experienced, particularly when choosing careers and friendships. The individuals detailed a range of helpful approaches to managing their anxiety, including both NHS and non-NHS prescribed treatments (psychological and pharmacological) and personal coping strategies (exercise, managing diet, relaxation, talking to people who share common experiences and receiving non-judgmental support). Unhelpful factors included stigma and general unsupportive attitudes from healthcare professionals, family members, friends or colleagues (for example, being told to ‘pull yourself together’). Individuals were dissatisfied with the lack of treatment options: antidepressants were frequently offered first, leaving people to seek psychological therapy independently and/or privately. People felt that it was important for them that the right treatment should be offered at the right time.

4.2.2. Personal account A

I was diagnosed with GAD in 2004 aged 39. My husband and I had recently moved so that my husband could take up a new job that would significantly develop his career. I had recently accepted voluntary redundancy from my job, so it was the right time for us to move. We moved into a small flat whilst we sold our house. We had no garden and only one car. I had no job and no friends in the area and as a result of the change and my newfound isolation I had a bad bout of anxiety which resulted in me seeing my new GP. My anxiety symptoms included insomnia, excessive worrying about my health (constantly checking my body for new symptoms and worrying that minor symptoms were indicative of a more serious illness), panic attacks, feeling tense and unable to relax, and being easily startled and upset. On an intellectual level I knew the feelings were not rational and that the reality was quite different, but I couldn’t control the anxious response and it made me feel powerless and trapped in my anxious feelings. Fortunately for me my new GP had a special interest in anxiety and depression so he was very understanding.

Despite only receiving a diagnosis in 2004, I have been suffering from symptoms of anxiety all my life – it just wasn’t recognised as such. From the age of 17 I have also suffered intermittently with panic attacks. It was a huge relief to get a proper diagnosis. Instead of being labelled unsympathetically by family and my GPs as a ‘highly strung, nervous child’, a ‘stressed out, panicky teenager’ and a ‘jumpy, angst-ridden university student’, I could finally say that I had ‘generalised anxiety disorder’ and ‘panic disorder’, which were medical conditions that could be treated and controlled. For many years prior to the diagnosis, the main advice I had received from my GP was to ‘learn to relax more’ and from my parents to ‘snap out of it’. Labelling a person with a disease or condition sometimes isn’t helpful for recovery, but it helped me by making my anxiety seem real and authentic, rather than a stupid flight of fancy.

In 2004 my GP offered me antidepressants, which I refused, and attendance at a NHS-run stress-management course, which I accepted. The course was useful in expanding my repertoire of coping strategies and it helped to shorten the bout of anxiety that I was experiencing. Prior to the course I used to manage my anxiety via rest, healthy eating and regular exercise. The course provided me with additional skills, such as assertiveness training, time management skills and relaxation exercises. I have since been offered antidepressants by two other GPs, but I still refuse them. In my experience, antidepressants are always the first treatment option offered by GPs. For me, they mask the symptoms and don’t help me get to the root cause of the anxiety. I have never been offered counselling by any GP, but I have paid for counselling myself. When I asked several GPs about counselling they told me that there was a waiting list and I could be waiting up to 6 months to see someone. I am currently seeing a counsellor who uses CBT and I am finding it very helpful, so much so that my anxiety has been reduced to much lower levels.

Both my grandmother and my mother displayed anxiety symptoms as I was growing up. My grandmother lived with us all her life and she was a very anxious person. She took Valium for over 25 years and had bouts of deep anxiety. It is possible therefore that I learned to be anxious, but GAD could have been inherited. As well as having GAD and panic attacks, I suffer from anxiety about my health and about illness in general. This has only been a serious problem in the last 5 years or so but I think it started as a child. Both my mother and my father had serious illnesses when I was growing up and neither of them coped particularly well with them. There was always a lot of anxiety in the air at these times and I think I learned to fear illness of any kind.

Over the years my anxiety symptoms have changed. I get far fewer panic attacks now, but I still get attacks of unspecific anxiety that come out of the blue. As mentioned before, I have started to get more anxious about my health too, which has resulted in me seeing my GP more often because of concerns that mild symptoms of illness are actually symptoms of something much more sinister, like cancer. I also worry and fret about the health of my family and friends and I am terrified of them dying.

I try to eat healthily and I exercise regularly, which involves walking for 30 minutes every day and taking more vigorous exercise three times per week. When I have an attack of anxiety it can be quite crippling; but I try to slow down the pace, exercise, get as much sleep as possible and increase the amount of relaxation exercises I do. Unfortunately I comfort eat during really anxious times, which doesn’t help me manage my weight (I am overweight as a result), but the amount of comfort eating I do has reduced a bit over the years. I no longer feel guilty about cutting back on social invitations when I am unwell; to be really busy socially when I am anxious makes me exhausted.

Having GAD has changed my life in many ways. I cannot burn the candle at both ends. I have to limit alcohol and travel, both of which aggravate my anxiety. I get fatigued easily and must get enough sleep. My husband is very supportive and understanding, although the anxiety has put a strain on our marriage. I can be very clingy, needy and antisocial when I am in a bad bout and we can argue quite a bit at these times. The arguing fuels the anxiety so it is a vicious cycle. My parents do not accept that I am ill; they think I am highly strung and self-indulgent and that I should pull myself together, so they do not support me much. On a positive note, having GAD and panic attacks has made me take care of myself and I have learned to nurture myself a bit more. In some ways the anxiety pushed me to achieve standards of excellence in school and college and in my career by pushing me to work harder and be smarter.

I now regard anxiety like an old friend who has been with me for over 40 years. My anxiety is part of me and I have learned through counselling to work with the anxiety, not to ignore it. In that way I get better more quickly.

4.2.3. Personal account B

I was diagnosed with generalised anxiety disorder in November 2008 when I was 22, although I believe I suffered from it for around 3 years prior to being officially diagnosed.

It’s difficult to pinpoint precisely when it began, although I have a vague idea. After spending a gap year working between 2004 and 2005, I moved to London to pursue a degree. It was a huge change – from earning a wage, I was now relying on my parents and by going to what is considered a prestigious university, I felt that I needed to justify my place there. Coming from a comprehensive school and a working-class family, it was as if I had to prove I was somehow better than students from more privileged backgrounds.

While in London, my mental state began to deteriorate quickly; I spent large periods not interacting with people because I was tied to my work and naturally suspicious, and every element of my day was dictated by the feeling that university work came first before anything else. This meant that while I was doing something enjoyable, whether in a pub, watching television or listening to music, I would be in a constant anxious state.

Over the course of my year in London my anxiety worsened to the point that during exams I broke down entirely. I passed my exams and did attempt to return to London, but because of my anxiety and concerns around finances, I decided not to. This led to the breakdown of my relationship with my then girlfriend who was moving to London to pursue a postgraduate course. This only exacerbated my anxiety further and led to a prolonged period of being single, as I was afraid to approach women and believed that my anxiety prevented me from entering relationships.

Months later I started a fresh degree course at another university and now I felt I had to prove my change of course was the right decision. This meant work could take a lot longer compared with other students and resulted in me being given a week’s extension to use if necessary.

My anxiety began to affect my social life more widely; because I was suspicious of people I had met in London, I now found social interaction with new people difficult and frustrating. This meant I spent large parts of my university life alone and relied on the friendship base that I’ve had for several years through secondary school and sixth form college.

As I entered my final year of university, I had had enough. The anxiety was preventing me from pursuing personal writing projects and fulfilling my ambition to be a journalist. I had previously visited my GP practice on two occasions and got nonchalant responses; firstly I was given self-help sheets and another time was ignored altogether: the disorder was not diagnosed.

It was not until I visited my GP for a third time in October 2008 and explicitly told the practice I did not want to see those previous two GPs that things began to improve. I was seen by a trainee GP who was well aware of the services offered and was empathetic about my condition and fully understanding. Importantly, she finally diagnosed my GAD.

While suffering from anxiety I was also diagnosed with depression. I vowed to never take antidepressants as I did not want my parents to find them and consequently find out about my GAD, and I was uncertain about the possible side effects. Yet eventually through discussion with my new GP I decided it was time to pursue the option and was prescribed citalopram.

I found the antidepressants the most difficult out of all therapies to keep up with; the initial side effects left me feeling highly nauseous and shaky, and almost left me housebound for a small period.

I began talking about my GAD and depression to a tutor of mine, who explained his problems with depression. I realised two things: firstly, there was no need to feel there was a stigma attached to anxiety and depression; and secondly, it made me determined to keep up with the medication and find a long-term solution.

From there I made every effort to combine medication with additional longer-term therapies. Fortunately I gained access to my university’s counselling service and was also offered CCBT through my GP and local PCT within a few weeks of beginning antidepressants. I was pleasantly surprised by this, yet somewhat guilty; patients on the NHS occasionally have to wait months to access either service, while I managed to access both quickly.

Since the beginning of this year, I have noticed a real improvement in my condition. The CCBT allowed me to recognise and control thinking errors, meaning I can distinguish between my own thoughts and ones that are triggered by the anxiety. The counselling also let me speak to someone confidentially and to work out an organised plan of action since my GAD meant I had trouble planning and organising.

I also began talking to my family about my problems with anxiety and depression, which was particularly difficult at first. They were concerned about why I hadn’t raised this sooner and why I was not able to confide in them. I explained that I felt this was something I had to deal with on my own because of stigma and because I wanted to gain independence on my own instead of relying on the help of others. In the end my family understood my point of view, yet I also felt rather stupid: family are there to help you in whichever way they can and whatever situation you are in. I now feel I can be more open with my family and get support when I need it most.

I now feel more comfortable in social circumstances, can balance work and my social life better and feel much more confident in pursuing my writing and journalistic ambitions. I am now off antidepressants and, thanks to therapy, I can manage independently and confidently.

Importantly, I feel gaining treatment at the beginning of my final year of university helped me secure a first-class honours degree and employment. I am also in a relationship and have been for almost 6 months. There is the odd period of anxiety and depression, but these are far less common and less debilitating then previously. I feel so much better.

4.2.4. Personal account C

About 18 years ago I began experiencing panic attacks which initially occurred occasionally but over time became more frequent and worrying. These attacks followed several close family bereavements. Initially I was prescribed antidepressants which I took for a few weeks – I was reluctant to take medication and instead learned more about panic attacks and how to manage them from self-help books. Several years later I returned to my GP on two or three occasions because I was experiencing acute and debilitating anxiety around revision and exam times while doing a part-time psychology degree. Despite doing very well in exams my confidence did not grow and instead I became more anxious. My doctor was dismissive and offered me no advice other than to say it was normal to feel anxious at these times.

About 5 years ago I felt under a lot of pressure with work, family and my final exams. At this time my anxiety became more chronic; I experienced it quite severely and almost constantly. I felt I could not cope and had to take time off work and defer my final exams. I returned to my doctor (a different doctor than previously), who recommended antidepressants. I explained I would like to avoid this as I thought therapy would be more helpful to me. It was a battle to convince him to refer me to the practice’s person-centred counsellor. At this time my GP and counsellor believed that my difficulties were due to depression. I found this very frustrating because my overriding experience was of daily, debilitating anxiety and chronic worry.

I was allowed about six sessions of counselling after which I continued seeing my counsellor on a private basis. Although in some respects the counselling was helpful in terms of support and having someone to discuss my concerns with, it did not provide me with any strategies with which to manage my anxiety. Over several months and while receiving weekly counselling sessions my anxiety worsened and I had to take further time off work. I believe my anxiety worsened because I felt unable to control my anxiety and I felt less able to cope. This time I agreed to take an anti-depressant (Seroxat). This did help to a degree and I was able to return to work and my studies. At the same time I continued to see my counsellor privately. However, while taking Seroxat, I never felt quite myself and I felt the range of emotions available to me had become limited. After about 12 months I decided to come off the anti-depressants and I gradually reduced them over 7 or 8 months under the supervision of my counsellor. A few months later I had a relapse, which led to me taking sick leave. At this time I began taking St John’s wort and although I took it for a year or so, I could not say with any certainty if it helped or not.

As I was unable to give an indication of when I might return to work and my employer felt unable to continue running his business without a manager for an indefinite period of time, my contract was terminated on health grounds. Around this time I stopped seeing my counsellor as I felt the therapy was not helping. On a number of occasions I raised the possibility of having CBT but for reasons I did not fully understand this was not offered. I then contacted Mind who assessed me but because of limited resources, and because I had just had a course of therapy, they were unable to offer me further therapy. They did offer me a relaxation course, which I attended and found very helpful – I still practise this daily. I was also able to do an assertiveness and self-esteem course, which helped me enormously as it enabled me to see that I was not assertive in some of my relationships. It also gave me skills for managing aggressive and passive-aggressive people, which I found especially helpful.

At this time I also started going to the gym on a regular basis; again this was very helpful and I continue to exercise regularly in order to maintain my mental wellbeing. I also started voluntary work in a school and this led to me being offered a job, which I agreed to take on a part-time basis. Although I explained to the head of the school I wanted to do this work on a part-time basis because I was still struggling with my anxiety it soon became clear the job required a full-time administrator. With a reduction in staff my workload increased and after a few months I felt unable to cope and my anxiety worsened. I discussed this with the head but to no avail and again I had to take time off. My contract was not renewed.

Around this time I contacted my doctor again and asked if I could be referred to a cognitive behavioural therapist; he gave me the telephone number for the community mental health team and asked me to phone them myself. After waiting several weeks I was assessed and told I would be contacted when my case had been before a panel who would decide if I was suitable to access their services. Several weeks later I was told my condition was not severe enough, but if I deteriorated further I should contact them again. It was also suggested that I contact Anxiety UK. I was quite devastated by this response; I felt there was no help available to me on the NHS and I was now unemployed and on benefits and was not in a position to pay for further therapy.

I contacted Anxiety UK and they arranged for me to see a cognitive behavioural therapist and although I had to pay for this I was only asked to pay a small amount because I was on benefits. One of the advantages of seeing a therapist through Anxiety UK was there were no limits on the number of sessions I could have – I felt at the time that this took a lot of pressure off me because a time limit was not being placed on how quickly I should get better. By this time my self-belief was rock bottom and I probably had around 40 sessions of CBT.

My recovery was somewhat up and down but on the whole CBT helped me a great deal – I began to feel I was able to manage my anxiety. Also for the first time in 3 years I began to feel more hopeful for the future. I also attended a self-help group (provided by Self Help Services, Anxiety UK’s sister organisation), which I found very useful. It was a relief to meet other people who understood how I felt. It was also great seeing other people who were further along the path of recovery –I met some very inspiring people. While attending the self-help group I learned about the possibility of training to become a volunteer helpline worker with Anxiety UK. With a great deal of encouragement from some members of the group who were already doing this I decided to apply. Following my training I began to work as a volunteer even though my anxiety was still a major problem. At Anxiety UK there is a strong belief that you can still make a contribution in terms of work/volunteering while learning to overcome your own anxiety and this was indeed the case for me.

It was while I was working at Anxiety UK that it became apparent that I was suffering from GAD with depression – it was a relief to know this because it helped me to understand what I was dealing with and what I needed to do to get better.

As my confidence grew and my anxiety became more manageable I started volunteering for Self Help Services as a CCBT support worker. I did this for several months and then I was offered the opportunity to co-ordinate a CCBT service, which I have done for almost 2 years on a part-time basis alongside my volunteer helpline work. My volunteering work has been very rewarding – it also provided me with the opportunity to work in a positive and supportive environment where there is no stigma attached to having a mental health problem.

In early 2008 I started taking steps to return to full-time work and went to an organisation that helps people on incapacity benefit return to work. Looking back I realise that I was probably not ready but I felt under some pressure to try (my incapacity benefit review was due in a several months). This led to a worsening of my anxiety and I started to fear another relapse. I returned to my doctors who referred me to the primary care mental health team. After a few weeks I was contacted and an assessment was carried out over the phone. I was offered CCBT, which I felt was inappropriate given my history and the duration of my GAD (4 years), or person-centred counselling – no other options were offered. Although I reluctantly decided to have counselling I did find it beneficial because the therapist was able to help me increase my self-belief – a problem that had become almost as troublesome as the GAD. Over time my anxiety/self-belief improved and this was further helped by the realisation, following two major life events, that I am able to cope with such events.

I also found doing a few courses (maths and IT) helped increase my confidence and by doing these alongside my other commitments enabled me to believe that I could cope with returning to full-time work, which I will be doing shortly.

4.2.5. Personal account D

I was diagnosed with GAD around 2000 when I was 15. I was already having CBT after being referred by my doctor for depression. My therapist recognised that my anxiety did not attach itself to one particular thing or event, but was generalised. She informed my doctor, who agreed and was very supportive. I was quite mature for my age, so was mostly just relieved to have a name for the fact that I am on edge all the time. I thought there must be something much worse wrong with me. I found that GAD meant I was never relaxed and found it very hard to enjoy social situations, school work and any type of relationship with friends and family. I still did all these things but with a constant feeling of anxiety and stress. I was always determined to do everything in spite of my anxiety, so I don’t feel it affected me that much – I just didn’t enjoy things the way others did.

I feel that my GAD may have been brought on by my Mum having a very stressful pregnancy and the fact that until I was 8 I lived with a very unpredictable and mentally ill father, who changed from minute to minute. Maybe I never learnt to relax properly. I did not ever feel secure and relaxed and that has translated to my adult life.

I first went to my doctor for help when I was about 14 and was diagnosed with severe depression. Obviously at that age my mum was involved in asking me to go to the doctor but I remember that I did go by myself and I recognised I wasn’t well. The doctor discussed therapy (eventually I contacted a private CBT therapist due to long NHS waiting lists) and I was prescribed venlafaxine (I was not offered any other treatments). I found both very helpful and still use CBT regularly today for both depression and anxiety, although my main problem is with anxiety. My doctor was very helpful and supportive, but I did have a bad experience when I had to get my prescription from another doctor who was very unsupportive and indicated that I was just lazy and could easily get over my problems by myself. The problem really is that stigma is so ingrained, it needs to change for healthcare professionals first before the public will have more understanding.

Since then, I have constantly been on medication. I went onto Prozac and then onto citalopram, which I am still taking. I am also currently having private counselling to sort out issues from my childhood and my relationship with my father. CBT remains the most helpful thing I have ever done and I always recommend it to anyone who may need it. I have also been supported by friends and family, although I am careful who I talk to about my feelings and diagnosis as I know how people may react due to the stigma of mental health issues! No one at my work knows anything about it. I would really love to be able to talk about it more freely, but am really worried about being judged.

I have got better over time. I think I function really well – I have a good job, social life, act in my spare time and I don’t think anyone would guess that I have an anxiety disorder. I’m not sure how well I would function without medication but I am much more accepting of who I am and how I am. I have also seen a nutritionist and have found changes in diet very beneficial for anxiety. I am still on edge most of the time, and don’t really ever relax properly, but I feel better about it now and enjoy my life. It makes me really enjoy things when I can and appreciate things more. I stay well using CBT techniques day to day, taking citalopram and doing exercise (swimming helps me a lot, as does dancing). I have found ‘usual’ relaxation techniques difficult, as it is hard for me to relax and be still, but I do try to meditate sometimes.

I feel that GAD affects my everyday life in that I have to be aware of what my limitations are and how to deal with them. I have to watch myself to check I am not becoming too stressed – but I think everyone could do with being a bit more self-aware and I don’t feel like this is an issue for me. I do not let it affect my work, but it has led me to choose a less stressful work environment that I know I can handle and enjoy. I find that it does not affect personal relationships too much, as I know myself and how to control it, and only tell people about it if I trust them and know they will be understanding. I would say that the experience of GAD has made me more empathetic and self-aware, and while I find the condition hard sometimes, I would not want to lose these traits.

4.2.6. Personal account E

As far as I was aware, my childhood was a happy one. I was a confident little girl, quite bright and sociable at primary school and went to ballet, Sunday school and Brownies where I was keen to do my best. Secondary school was also not a problem for me. Having passed my 11 plus, I went to a small selective school where I was often top of the class. I worked hard, had a Saturday job which I stuck at despite hating it for a while, and eventually got to university and teaching training college, both of which I loved. I then began a career in teaching.

It was in 1990 at the age of 25 that I began to suffer with anxiety. I thought I felt sick and took a day off work. I became very distressed and asked my mother to travel 50 miles by train to be with me. I had never done this before. She came and found me weepy and overly worried and scared of being sick. I had always had ‘a thing’ about being sick and had not vomited since the age of about 12, however, this terror was something new. We went to the doctors and explained my difficulties and the doctor gave me medication (Buspar). I am not really sure that the medication helped. There was certainly no immediate effect – as I now know would be expected with medication of this type. He recorded ‘anxiety state’ on my sick note which I was hurt by as I felt this was his way of saying I was not ill, just worrying and making an unnecessary fuss. There was little explanation or reassurance. He told me to walk round the streets drinking from cans and to go and sit in A&E to see people with real problems!

I went back to work after a while as I have high standards and it is highly unusual for me to be off sick, but I had lost my confidence. At the age of 29 I had a serious relapse, which led to me being off work for about 8 months. This time I had a different GP. He was one of the least helpful professionals that I have dealt with in my life. He prescribed drugs and referred me to a psychiatrist, who referred me to a day hospital which I attended for several months. This was all to his credit. However, he seemed to have no idea how to talk to anxious people, scolding me for not recovering sooner, and explaining that his budget was finite and he had targets to meet. He told me lies and caused me to feel angry – which is not how I am. (I made a formal complaint about him.) I also met with a clinical psychologist for several years. We talked through whatever I wanted to talk through, with his role seeming to be to challenge my thinking and perspective on things. I felt that he understood and that he knew I was trying to dig myself out of the hole I was in. I knew he was an expert in the field of post-traumatic stress and trusted his judgements. It was not easy to share the ‘inner me’ with him – but I never missed an appointment. I feel that this therapy did help.

I didn’t know why I had to go to the day hospital but did, religiously, never missing an appointment. I was allocated a key worker and attended group and individual sessions. I was terrified at times and would shake from head to foot. I met people from all walks of life – people who self-harmed and were suicidal, and violent people – but I got to know them all and we tried to support each other, respecting each other’s problems. We did relaxation exercises, groups where we talked about our worries, ‘lessons’ about fight and flight, and so on. I also had to attend gym and art classes. In individual lessons, we did some behavioural work, such as trying to fight the fear I felt regarding vomit. I had to hold a sick bucket, clear up imitation sick and watch a video of actors pretending to vomit. The practical help was good, although I felt pathetic that I was being asked to nurse a bucket and would despair about what my next challenge might be. I was embarrassed when receiving praise for ‘managing’ the tasks that I felt ‘normal’ people would do easily. It was not easy but it did give me more self-belief and confidence that, in the real world, I might cope and not cry like a baby if faced with a vomit situation! I felt I needed more of this type of support, but my time at the hospital was terminated.

Two things were not great about the experience at the day hospital. I was given a student as a key worker for a while and I did not feel confident that she knew what she was doing. Then, when her placement was over, I had to establish a relationship with a new key worker. We worked well together until she left. Amazingly, the powers that be decided I had recovered enough to leave the day hospital at the same time my key worker left. I am not sure that that decision was based on medical diagnosis –more convenience, I believe. Anyhow, I coped!

I think that being brave enough to confide and trust in others and understanding the feelings of panic and dread were key to being able to control the wish to run away. The medication was changed by the hospital psychiatrist to imipramine (150 mg), which I think also helped. Talking to people who were not judgemental was great, as was having my thoughts challenged by professionals in a kindly manner. I don’t think the art and gym helped, nor the relaxation! My mother and father took it in turns to live with me for several months as I was terrified of being alone. My mother rang the Phobics Society who offered support – it was great to realise there were many more like me and that it was not the end of the world.

I do feel that life experiences have contributed to my condition. I knew nothing of my father’s mental illness until a dreadful day when I was 16 and learned that he had held a carving knife to my mother’s throat. He had apparently been ill for many years with bipolar affective disorder but the truth had been masked from me. His mood swings, temper and strange behaviours had all been hidden or disguised so that I would not be hurt by them – but I guess the stresses in the house were there. I am an only child and had no one to talk to. Indeed, talking is not something that is done well in the family. You just get on and work hard and take your mind off any problems, which is perhaps not always the best option. I think being the only child also put a lot of pressure on me to do well. I am now a perfectionist in all that I do, and if I am not confident in something, I do not do it. I work, work, work, and give little time to myself. I have no hobbies. I like to be in control.

It is embarrassing and makes me angry with myself when worrying prevents me from joining in with what most people would call ‘a treat’ or ‘an adventure’, but I imagine too many problems that may arise. I can worry for England and build my life in such a way as to avoid as much anxiety as possible (apart from going to work, which is a very stressful environment). There is a famous children’s poem called ‘Whatif’, and that’s how I think! I know that I am missing out on so much but cannot muster the courage to do many things such as travel on trains or buses, go abroad, learn new skills, socialise with new acquaintances, or look for promotion. I had a phase when I could not eat in front of others so never ate out. I have phases where I cannot drink in the company of others. I could not travel and still dislike travelling in strange cars. I will not go on public transport for more than about 3 miles. I worry about decisions so take a long time to make them. I worried that a child of mine might turn out like me, so have chosen to not have children.

I have very low self-esteem, despite being quite successful and highly respected in my career. Indeed, my employer sees improving my confidence as being a target for me and cannot understand why everyone else’s perception of me as being highly skilled and competent fails to give me the reassurance that I need. Confidence never used to be an issue. I believe that the GAD and putting limitations on my life has made me feel worthless and useless at times. As my friends have moved forwards and ‘grown’, I have become stationary and shrunken.

My friends know what I am like. Whenever there is a social occasion, I apologise profusely and rarely attend if alcohol and potential over indulging may occur. I feel ridiculous about this and spend the day of the occasion wishing I dare go, but this is not enough. I somehow feel not good enough to go and that I’ll spoil the occasion because people will have to look after me. I also have a thing of not looking ‘right’ – not wearing the ‘in’ clothes, having the right hair style, make-up and so on.

I now live with my partner of 13 years. He does not understand my phobia but lives with the limitations it puts on my life. Indeed, we do not discuss my ‘condition’ as previous discussions were not helpful. Following 12 years of being supported by medication, I have been off it for a year and a half. I am working full time as a teacher where the ‘threat’ of a child vomiting is with me each day. However, I do not panic as much as I used to when a child says they feel ill and my colleagues know that I may need their support should the event occur. I keep rubber gloves nearby and also carry an opaque carrier bag with me at all times just in case I am ill.

I think that society in general does not understand mental issues and often sees them as a way for people to shirk away from their responsibilities. Television and the media are not helpful as most of their coverage of mental illness is about where ‘care in the community’ has gone seriously wrong, rather than trying to explain and educate the community it serves.

4.2.7. Personal account F

I began suffering with GAD 5 years ago. I am now 52. At the time I had dreadful problems with my periods, which were very heavy and frequent. I then began to have bladder problems. Hospital tests revealed that my bladder wall was prone to bleeding owing to a deep infection. I was told by my consultant that most sufferers needed group support as the constant pain and discomfort was very wearing. The support group for the bladder infection was 10 miles away, and in my current state I couldn’t face the journey or the socialising. I could not cope at all, so I was visiting my GP two or three times a week, desperate for help, however I was given no such help. I was already suffering from depression, which was diagnosed about 10 years ago.

I was on escitalopram, but it really didn’t help the depression or the GAD. My doctor believed I was OK. He said, ‘When the weather improves, so will you!’ But the feeling of pure panic was overwhelming. My family was at a loss what to do. My mother lives just down the street from us and I would visit her every day. When I became ill I would walk down to see her, but I couldn’t settle there. I would go home and go around all the rooms, and feel so afraid and low that I would just go to bed. This became a pattern. The only thing I wanted to do was turn myself off.

After much pleading for help, my doctor gave me a low dose of diazepam, but only for 1 week. Even that didn’t do anything, and my doctor wouldn’t give me any more. I did a lot of crying and pleading, and as I was desperate at the time I couldn’t understand why he wouldn’t prescribe me any more diazepam. But now I understand – I think he was worried I might get addicted to them.

I visited the doctor again in a suicidal state. He sent the mental health team and they gave me an action plan which consisted of things we ‘could do’ including CBT. I had no faith in it, but I would consider anything. I had an appointment for CBT, but when I went I was told that No Panic was doing everything the CBT would achieve anyway, that is, telephone counselling. On the back of my action plan were various phone numbers, including for the Samaritans, Mind, SANE and No Panic. I rang them all again and again. Although very sympathetic, the Samaritans, Mind and SANE left me feeling no better nor worse than if I hadn’t rung them. No Panic was the only organisation that really helped. By this time I could hardly leave the house, and could only spend a limited time out of bed; it was my only escape. I was later told that I had been failed by the mental health system. I agree. The thought of travelling backwards and forwards for CBT only added to the anxiety.

I also rang NHS Direct and asked how I could be committed. The reply was harsh and unkind. I knew that the person I spoke to didn’t know how I felt, but it just made things worse.

I visited A&E numerous times. During one visit a mental health nurse was on duty and he said that my antidepressants were not strong enough and to visit my GP again and discuss it. My doctor wouldn’t hear of it. ‘I am your doctor’ he said. ‘I decide. Not a nurse. I will only listen to another doctor.’ That was that. He then said, ‘I don’t know what to do for you now!’ I was in a terrible state. I got so bad I took an overdose of venlafaxine, which I had been prescribed years before. Although it made me sick, I woke up as early the next morning as I always do, about 3 o’clock.

It was after this that I asked for one-to-one mentoring over the phone from No Panic. It helped. They were understanding and kind and I didn’t feel stupid!

I wanted to know what I was suffering with, so I looked on the internet. GAD was the first explanation for exactly how I felt. Not wanting to self diagnose, I visited my GP and asked him if I had GAD. ‘Yes, I think you do’, he replied. I asked him about seeing a psychiatrist, but this never materialised. The mental health team told me about beta blockers and another doctor I saw had no problem prescribing them. I think they help, although she now says she wants to take me off them in the next few months. I am so afraid. All in all I am still struggling.

4.3. PERSONAL ACCOUNTS – CARERS

4.3.1. Introduction

The methods used for obtaining the carers’ accounts were the same as outlined in section 4.2.1, but the questions also included:

  • How long have you been a carer of someone with GAD?
  • How involved are/were you in the treatment plans of the person with GAD?
  • Were you offered support by the person’s practitioners?
  • Do you yourself have any mental health problems? If so, were you offered an assessment and treatment by a healthcare professional?
  • How would you describe your relationship with the person’s practitioner(s)? (GP/community psychiatric nurse/psychiatrist, and so on.)
  • Did you attend a support group and was this helpful? Did any people close to you help and support you in your role as a carer?
  • In what ways has being a carer affected your everyday life (such as schooling, employment and making relationships) and the lives of those close to you?

Two personal accounts from carers of people with anxiety were received, which offer very different perspectives of being a carer.

4.3.2. Carer account A

My grandparents live near us and have been very involved in my growing up and helped my mother a lot. However, 2 years ago, my competent and energetic grandmother suddenly changed. She became anxious, was scared to go out without my grandfather, and occasionally panicked that she was close to death. This change occurred following an incident when a friend from church, who had only been slightly ill, called one day for help and within a few hours had died. After this my grandmother’s health declined. She complained of feeling cold all the time, and became anxious about her heart. She was in her late 70s, but her health had not been giving cause for concern. She looked after herself well, ate sensibly, and had regular check-ups. Now she was anxious all the time and sometimes, especially at night, thought she was going to die (we now know she was experiencing panic attacks). On one occasion she believed that her heart was failing, and asked my grandfather to ring 999. The hospital carried out all the usual tests for suspected heart problems and kept her in overnight. This happened more than once until the only place she felt safe was the hospital – a place she had always wanted to avoid up till now!

At the time we thought we would lose her. Nobody realised that the problem was psychological rather than physical. At her age, it was necessary to put her through quite arduous tests before the healthcare professionals could be sure that she was suffering with anxiety. I think the fact that my grandmother had private health insurance compounded this difficulty, as many tests were made available to her, and she could choose between two healthcare systems. One doctor at the local A&E, where she was always treated with great kindness, finally made it clear that tests revealed no major heart or other problems and she was experiencing anxiety.

However it was hard for my grandmother to accept this diagnosis because she felt so physically unwell and was not of a generation likely to admit to mental health problems. More tests were offered by the private sector, and I question the validity of this, as the extensive tests were an ordeal that both weakened my grandmother and prolonged the period before she was ready to accept the anxiety diagnosis. I imagine this may often be a difficulty with older patients, as it is necessary to establish that their symptoms do not have a physical basis, but medical staff need to be alert to the possibility that there may be a psychological component to their presentation, and be able to put this possibility to the patient without pushing them into denial. The net effect otherwise is to delay the introduction of treatments for the anxiety while testing for non-existent physical problems.

My mother and I were quicker to accept the suggestion that anxiety might be at the root of the problem. I thought that the sudden death of her friend, which had been so traumatic for my grandmother, might have stirred up earlier experiences of her childhood growing up during the second world war, and also of the premature death of a loved younger brother in the late 1980s. I asked a friend, who works on a telephone helpline and has personally suffered with anxiety, if she could help. While not pushing my grandmother too much, she was able to secure her agreement to send her information about some simple techniques to help manage the anxious feelings. I used this as a cue to buy a book that explained anxiety and outlined cognitive behavioural therapy as a Christmas present. Being provided with written information and guidance and finding that it did indeed apply to her – but not feeling railroaded into deeper interpretations that failed to acknowledge her physical symptoms – was the most helpful thing at this time. It also opened the door to an exploration of alternative approaches.

My grandmother saw a homeopath for a while, and was given helpful advice about her sleep patterns. She also saw a person-centred counsellor privately for a short time, which helped her gain insight into the meaning of what had happened and realise that she could not always be the strong person that she had tried to be up till now. She was prescribed antidepressants and other medications by her GP, but has a tendency to give up taking medicines, as she is quite slight and they often seem to have a disproportionate effect. At first, she was quite unwilling to persevere with medication and would describe having a distressing reaction in the first few days. However at one point an opportune combination of painkillers for her back pain, a cough suppressant for sinus problems and antidepressants for the anxiety finally resolved long-standing insomnia problems dating back to her brother’s death. The restoration of her ability to sleep through the night was a significant factor in aiding her recovery. She continues now to take a low dose of citalopram and finds it helpful.

My grandmother is not wholly over her anxiety, but is learning to adjust her life and goals, and live with the condition. She still doesn’t go out without my grandfather, and doesn’t like to travel too far. But she sleeps and eats quite well, and is able to let others look after her more after years of being the strong one. For all the close family, including myself, it has been a relief to know that her life is not threatened and her condition is manageable. However we have had to adjust to a significant change in her and therefore in the family system as a whole. It is hard when someone goes from being very competent to suddenly lacking in confidence and needing a lot of support. She used to travel the world and now just getting on a bus feels difficult. She has become very reliant on my grandfather, whose own health is not good, so my mother and I do everything we can to support them both emotionally and practically. We are aware that they need more help, even though it’s hard to ask for it, and offer what we can while trying not to give offence. I think we have also seen a different, more vulnerable, side of my grandmother – part of her we didn’t get to know before because of her confident and strong approach to life. I am glad to be able to offer her some support now in the way that she has always tried to support me. I am also grateful to the NHS for the help they have given her, and the perseverance of medical staff in establishing a diagnosis and seeking effective treatment.

Finally, I think it is helpful if professionals can find ways of talking about psychological distress that patients are able to accept. It was hard for my grandmother to come to terms with something like this happening to her, and subsequently to tell family and friends that she had been diagnosed with anxiety rather than a physical health problem. There is still a stigma about mental health, especially for the older generation. However the stresses of older age – coping with worsening health and seeing people you care about die – are very likely to bring about a resurgence of anxiety that people may have experienced earlier in their lives, but had been able to control with the greater resilience of youth.

4.3.3. Carer account B

My son is almost 21 years old and has recently been diagnosed with generalised anxiety disorder. He has had problems with anxiety and panic attacks from around the age of 16 following a summer when he and some friends were smoking cannabis on a regular basis for about 2 weeks. He had previously been quite an anxious child and labelled ‘hyper’ at school. There had been a question as to whether he was dyspraxic or just a ‘clumsy child’ but it was never investigated. Otherwise he was fit and well, having had no physical problems other than recurrent tonsillitis as a toddler and a tonsillectomy aged 6.

The symptoms of anxiety led his father (my ex-husband who had trained as a registered mental health nurse years before) to arrange CBT with a former colleague. Our son had CBT as a private arrangement (our GP and the NHS were not involved) over a 3-month period, which eventually helped.

At the age of 17 following the death of a college friend and being mugged, he became anxious again but coped to a certain extent until he was 18 when finally after much persuasion he went to our GP who gave him ‘self-help’ leaflets. His anxiety at the time was not debilitating enough to affect his usual life style.

In the past 5 months my son’s GAD has become acute and my caring role has increased. He has been unable to work, eat or carry out ‘normal activities’ (for example, travel on public transport) without me being present. His father suggested that our son should see his colleague again for CBT, which he agreed to until the NHS appointment materialised.

I have visited my son’s GP with him on many occasions regarding his anxiety. The second GP referred him for CBT in November 2009 and he was offered a first appointment in January 2010 – this was ‘online’ not person to person. After two events that led to visits to the A&E department at the local hospital, a fourth GP agreed to refer him to a CPN [community psychiatric nurse]. On both occasions, the casualty doctors explained they could not refer him to the psychiatric team as he was not ‘a danger to himself or others’. They recommended a GP referral to psychiatry.

The GP who referred my son prescribed citalopram (10 mg daily) as a short-term measure to alleviate his anxiety not knowing how soon he would be offered an appointment with a psychiatrist. After 2 weeks my son’s anxiety had reached such a peak that I had to leave work to come home having had three panicky phone calls from him in an hour. I phoned the CPN’s office to enquire about his referral as we felt desperate that we hadn’t heard anything. They had not received the GP’s referral and suggested I contacted the GP. The GP apologised that he had ‘forgotten’ and faxed a referral as ‘urgent’.

I requested involvement in my son’s first hospital visit with the CPN for his assessment and I was invited in for 10 minutes after his hour with her. When I enquired what the plan was for his care, she replied that he was going to be referred for psychological treatment and see a psychiatrist regarding further medication as my son had developed a fear of eating/choking. I asked what I should be doing to help him, where he could go on a daily basis, where there were support groups, day centres, and so on. I was told I would know more after his psychological appointment. I was not offered help.

I have had reactive depression in the past and recognise when I am ‘going down the slippery slope’. I know the triggers (for example, sleep deprivation, which I was having constantly with my son waking me regularly during the night, afraid that he was going to die.) My son’s healthcare professionals did not ask me about my mental health but I believe they may have asked my son when taking a history. I made it clear that I had taken time off from work to look after him as I had no family in the area or partner and his father had never provided support or care. On one occasion when I had to contact a CPN on the phone I was told it was my right to have compassionate leave from work. I had been off a total of 6 weeks by then and my allowance from work is 5 days. I was totally exhausted at the time and had phoned to ask about respite care and advice regarding the side effects of quetiapine (recently prescribed to my son) that were very worrying.

Generally speaking my relationship with my son’s practitioners is unsatisfactory. I lost some trust when the GP forgot to refer my son and I am made to feel I am almost a nuisance when I have been in touch with the GP for advice regarding my son’s medication even though he had many side effects and I needed help. The CPN in the day unit who I contacted for the same reason was not helpful and only phoned back with a relayed message from the consultant after my son had made a complaint with the help of an advocate from Mind. This was 6 days after my initial plea for help. When I contacted the consultant psychiatrist’s secretary regarding the same problem I was told that he did not speak to patients or their carers on the phone. She also told me that if I was worried about my son I should take him to A&E. It was then that my son and I went to see the staff at our local Mind, who were very helpful. Due to the relationship with my son’s practitioners I feel he has little confidence in them, which in turn adds to his anxiety.

My son and I have not been offered information regarding support groups from the hospital staff or GP. I have searched the internet and have found a few voluntary organisations that offer support and activities for my son and a carers group for me. I have had moral support from a handful of friends including two work colleagues. A close friend offered practical help in terms of ‘son sitting’ for a couple of hours when he was at his worst. My son’s friends have been extremely supportive, calling at the house and staying in with him, which enables me to go out for an hour or two.

My whole life has been ‘put on hold’ since my son’s GAD. I cannot plan holidays or weekends, which I did find frustrating at first as I am usually a very active person. Leaving my son alone for more than an hour to go to the shops can be traumatic for him. I am not yet able to return to full-time work as he is too anxious to be left for such a long time alone. At present I am working mornings only, returning home at 2 pm and he has arranged his sleeping pattern so that he goes to bed at 3 to 4 am and sleeps until midday. He is just coping with that. When I arrive home I usually cook him a meal or encourage him to make toast or whatever he fancies. He will not eat without me being there but will drink a Complan whilst alone if I prepare it for him and leave it in the fridge.

I feel constantly tired, have developed eczema, my arthritis, which is usually under control when I have the chance to exercise, has flared up and my relationships are suffering. My true friends, however, have shown their worth and I am very grateful.

My son is due to begin psychotherapy in March 2010, 5 months after the start of the problem. He has improved and I feel cautiously optimistic that he will continue to do so, be it a long and winding road. Sadly, his progress is not, I feel, due to the input of the NHS as a whole, but he is getting by ‘with a little help from his friends’ (and his mother!).

4.4. REVIEW OF THE LITERATURE

4.4.1. Introduction

A systematic search for published reviews of relevant qualitative studies of people with GAD was undertaken. The aim of the review was to explore the experience of care for people with GAD and their families and carers in terms of the broad topics of receiving the diagnosis, accessing services and having treatment.

4.4.2. Review question

For people who have GAD and their carers, what are their experiences of having problems with GAD, of access to services and of treatment?

4.4.3. Evidence search

Reviews were sought of qualitative studies that used relevant first-hand experiences of people with GAD and families/carers. For more information about the databases searched see Table 3.

Table 3. Databases searched and inclusion/exclusion criteria for clinical evidence.

Table 3

Databases searched and inclusion/exclusion criteria for clinical evidence.

The GDG decided that quantitative studies picked up in this search should also be included in this review, if they looked at the experience of GAD. A total of 7,961 references were identified by the electronic search. Of these references, 7,909 were excluded at the screening stage on the basis of reading the title and/or abstract. The remaining 52 references were assessed for eligibility on the basis of the full text.

The search found one systematic review that explored the experience of care for people with anxiety and depression (Prins et al., 2008), however, the results focused mainly on people with depression alone. Therefore, a decision was made to look at the studies identified in the review for this guideline that met the following inclusion criteria: qualitative or quantitative studies looking at the experience of people with either a primary diagnosis of GAD, mixed anxiety or mixed anxiety with depression, in which at least 20% of the population were diagnosed with GAD or mixed anxiety. Overall, six qualitative studies, 20 quantitative studies and two non-systematic reviews met these inclusion criteria, the characteristics of which have been summarised in Appendix 15a. Twenty-five studies were considered for the review but they did not meet the inclusion criteria so were excluded (see Appendix 15a). The most common reason for exclusion was that at least 20% of the population did not have a diagnosis of anxiety disorder.

4.4.4. Experience of generalised anxiety disorder

This section summarises quantitative and qualitative studies that have looked at the experience of GAD, in terms of thoughts and feelings, worry content and comorbid depression.

Thoughts, feelings and worry content in people with GAD

The following experiences of thoughts, feelings and worry content are drawn from people who have pure GAD. Craske and colleagues (1989) were among the first to examine worry content in GAD and found that, in general, people with GAD have long-lasting and uncontrollable worries that are likely to occur without a precipitant. Compared with controls, they worried more about ‘illness, health or injury’ and less about financial matters, but no significant differences were found regarding family, work or school. Diefenbach and colleagues (2001a) also found no differences between those with GAD and controls regarding worries about family or work, and no differences on finances, health and other miscellaneous topics (in people 60 years and over). They did find that compared with another study that looked at a younger population, older adults with GAD had more health worries than younger adults with GAD, an effect which was not found to be as strong in the control comparison (Roemer et al., 1997). More recently, Becker and colleagues (2003) found that compared with controls with no mental health problems, as well as people with other anxiety, somatoform, mood and eating disorders and substance-related problems, women with GAD had significantly higher levels of worry about work, family, finances and social factors.

Breitholtz and Westling (1998) interviewed 43 people with GAD and found that ‘inability to cope’ was reported as the most ‘important’ thought, followed by thoughts of loss of self-control, injury to self/others and ill-health. In addition 44 people with panic disorder were interviewed in the comparison group and were found, in general, to have more thoughts focusing on physical, as opposed to mental, catastrophes than those with GAD. Diefenbach and colleagues (2001b) compared worry content in people with GAD to people with depression and found the latter population reported a higher frequency of worries relating to relationships, finances, lack of confidence and having an aimless future, whereas people with GAD reported slightly more physical threats and loss of control. Hoyer and colleagues (2002) found that young women with GAD experienced a higher intensity and frequency of worry episodes compared with women with other anxiety disorders or depression and healthy controls.

Borkovec and Roemer (1995) examined reasons behind their worry in a population sample of college students and found that, compared with non-anxious controls, people with GAD saw worry as a distraction from other emotional concerns and an effective problem-solving solution, and they also held superstitious beliefs that worrying about a certain event would reduce the likelihood of it happening. Decker and colleagues (2008) used questionnaires and daily diaries to investigate emotional experiences and found that people with GAD experienced negative emotions more intensely compared with controls without the disorder. Those with GAD reported higher use of emotion regulation strategies, including: situation selection (avoidance to manage emotions), distraction, rumination, masking/hiding emotions and soothing one’s emotions. Overall, people with GAD had to work harder to regulate emotions; however this was based on a student population, so findings could differ in a treatment-seeking population.

More recent findings by Ruscio & Borkovec (2004) looked at the differences between highly worried individuals without GAD and worriers with GAD. Subjects were matched on their trait level of worry and completed an attention-focused task after which they were assessed. Results showed that people with GAD experience less control over negative intrusive thoughts following worry and report stronger negative beliefs than their worry matched controls. The quantity, frequency and intensity of worries, however, did not differ between the two groups. GAD is therefore associated with some unique experiences compared with equally worried individuals without the condition.

GAD and depression

There were a few studies that looked at differences between ‘pure’ GAD and GAD comorbid with depression or another anxiety disorder. Porensky and colleagues (2009) used a range of tools to investigate experience of disability, health-related quality of life, anxiety, depression and cognition in older adults. People with GAD reported significantly less participation and more difficulty in carrying out everyday activities than controls with no mental health problems. The largest differences in functional limitations between GAD and the controls were found in mental and emotional health, social functioning and vitality. People with GAD also used more healthcare resources than the controls, although this was not linked to severity. This study was in a population aged 60 years or above, so findings may not be wholly applicable to younger age groups.

Wittchen and colleagues (2000) found people with ‘pure’ GAD or GAD comorbid with depression rated their general health, mental health, physical functioning, physical and emotional roles, bodily pain, social functioning and vitality, significantly lower than non-affected controls.

4.4.5. Access and engagement

In a review of the under recognition of anxiety and mood disorders, Tylee & Walters (2007) highlighted that 70% of patients with depression and anxiety have a somatic presentation. People with GAD do not often associate their symptoms with a psychological disorder and those who normalise or minimise their symptoms are less likely to be identified. Recognition of depression and anxiety is usually determined by the knowledge, skills and attitudes of primary care practitioners. Factors that improve recognition from primary care practitioners include empathy, interest in psychiatry and asking about family and problems at home.

Mojtabai and colleagues (2002) found that participants with comorbid problems were three times more likely than participants with anxiety disorders alone to perceive a need for professional help. Of 648 people with anxiety, 21% perceived a need for professional help and of these only 14% sought professional help.

Haslam and colleagues (2004) found that people often do not realise that their symptoms, which are sometimes physical, are indicative of anxiety or depression and can be treated, until either someone (a friend family or colleague) advises them of this, or a crisis occurs. Once people are aware they have a mental health problem, they may feel more motivated to seek help. In a study by Lang (2005) one barrier to seeking treatment included people feeling that they could deal with their problems themselves. Other barriers included problems with locating a therapist, lack of time, transportation and cost.

Kadam and colleagues (2001), interviewing 27 patients in four UK general practices, reported that people with depression with or without anxiety, who had sought help through a range of self-help and alternative therapies, found that having someone to talk to was very important, particularly someone outside their family situation such as a counsellor, who would listen, understand and offer advice. However, finding someone to talk to could be a problem. Some saw their GP as being willing to listen and refer on; others had reservations about approaching their GP, thinking that they would be ‘too busy’ to spend time on what they might consider to be trivial matters and some felt that they were not encouraged to disclose their emotions or psychological problems. There were some preconceptions that a GP would do nothing but prescribe drugs (although some people did find drug treatment useful, the majority did not want to take medication). People would have liked to have had more information provided by their GP and better access to preferred treatments. People also felt that waiting times were a barrier to accessing help – when they felt anxious they wanted to speak to someone immediately and not wait days or weeks for an appointment.

Boardman and colleagues (2004) looked at the prevalence of unmet need among patients attending primary care services in Cheshire for mental health problems and found that there was a high level of unmet need especially among people with anxiety disorders. Needs were assessed by the practitioner rather than the patient, who may not have accepted the treatments offered.

In a non-systematic review, Blair and Ramones (1996) highlighted that anxiety can severely affect all aspects of a person’s life and can lead to physical diseases or stress-related disorders if it is left untreated. The author suggests that untreated anxiety can also lead to poor treatment adherence and therefore a negative outcome, which can cause resentment towards healthcare professionals. This review mentions misconceptions by nurses and highlights that people who have had untreated symptoms for a long time are more likely to become irritable and demand medication. Ironically, if a person were seen as being demanding or difficult, the accuracy of their self-report of anxiety symptoms might be doubted.

Gender and ethnicity

Alvidrez and Azocar (1999) highlighted the practical barriers for women with depression (66%) and anxiety (15% with GAD and 9% with panic) in accessing effective treatments, such as financial problems, lack of transport and childcare. These were pressing issues for women rather than stigma-related barriers such as embarrassment, being afraid of what others may think and lack of approval from family. Ninety-two percent of those surveyed identified at least one barrier to treatment; the average number of barriers identified was 2.2. Fewer women with a college education identified a stigma-based barrier to treatment than those who did not attend college; college-educated women were also less interested in medication. Thirty-four percent of people with common mental health disorders (such as a current mood or anxiety disorder) anticipated a stigma-based barrier to services, compared with 13% of people without a common mental health disorder. There was high interest in individual and group therapy, depression prevention and mood management classes, and a low interest in medication. There was no ethnic difference in whether a person preferred medication or therapy.

South Asian people with common mental health disorders, including GAD, were found to be less likely to have problems identified in primary care and have lower rates of uptake for treatment, and were more likely to incorporate physical symptoms into their presentation (Commander et al., 2004). Commander and colleagues also found that South Asian people did not seek support from lay or traditional healers and were more likely to consult a GP regarding their problem rather than a friend or relative. However, only half of both sets of participants (South Asians and Caucasians) who saw their GP disclosed their problem. There was no difference between South Asian and white populations in terms of what they understood to be their psychological problem, and what they perceived to be the cause.

4.4.6. Beliefs about and experiences of treatment

Beliefs about and preferences for treatment

Prins and colleagues (2009) found that there is a high level of need for care, as perceived by primary care patients with anxiety and/or depression. The majority expressed a need for information (58%) and counselling (61%) as opposed to medication (41.5%). Older people are less likely to perceive a need for services, with the exception of medication.

In the study by Boardman and colleagues (2004) medication and CBT were the two treatment options most often thought appropriate for anxiety.

Wagner and colleagues (2005) found that patients’ beliefs about psychotropic medication and psychotherapy did not depend on any specific anxiety disorder they were experiencing. However, people who also had depression had more favourable views of medication than those with anxiety alone.

Bystritsky and colleagues (2005) found that people with anxiety disorders from a white ethnic background had more favourable views about medication and psychotherapy than non-whites. People who had strong beliefs in medication were more likely to adhere to treatment; however, a strong belief in either medication or psychotherapy could not predict adherence to the use of psychotherapy. Older people had more favourable views of medication than younger people.

A study of older people with depression (with and without anxiety) by Gum and colleagues (2006) showed that experiences of previous treatments play a strong role in treatment preference. People with previous experience of counselling or those who had visited a mental health professional before had more favourable views about counselling than people who had not. Similarly, people who had used antidepressants in the past and found them helpful had more favourable views about medication. It was felt that access to preferred treatment is better provided in collaborative care rather than usual care. Although some factors could help to predict a treatment preference, once that treatment is received it does not predict patient satisfaction or outcomes.

Lang (2005) found that primary care patients (45% with distress, 35% somatisation, 30% depression and 20% anxiety) expressed a need for help in understanding the cause of their feelings, learning skills to manage their mood and having someone to talk to. Seventy percent of people expressed a preference for individual treatment over a group mode of treatment and medication. People said that if such interventions were offered in their clinic they would be more likely to attend fitness programmes and classes about healthy living and stress management than counselling. People who had taken antidepressants in the past, compared with those who had not, appreciated that the response was not immediate and could take time. People of Caucasian origin received more mental health treatment, believed medication to be more helpful and thought that they could work their problems out for themselves compared with non-Caucasians. Of the people who had individual counselling, the majority were non-Caucasian.

Experiences of drug and psychological treatment

In a study by Haslam and colleagues (2004) side effects of medication for depression and anxiety were described by participants as being similar to symptoms of anxiety, such as confusion, dizziness, nausea and inability to make decisions. Others reported side effects such as shaking, severe weight loss, speech impairment, and feeling unsteady, disorientated and generally ill. For this reason, non-adherence to medication for anxiety and depression was common – people took less medication than prescribed, and discontinued it because of side effects or because symptoms had not improved. People were generally not positive about taking medication but for those who found it beneficial, there was a common fear of dependency or addiction, which could also lead to stopping medication too soon. There was some confusion among people with anxiety and depression about how long it took for antidepressants to work and about why, at the start of treatment, their symptoms could become worse before they improved at the beginning of treatment (where there were high rates of discontinuation). Regular reviews of medication could help people maintain treatment long enough to prevent relapse. Moreover people felt that if they were given more information about their medication they would be more able to comply with their course of treatment.

The study by Haslam and colleagues (2004) was a focus group study involving people with anxiety and depression, as well as some of the staff involved in their care, and the authors recommended the provision of information leaflets in primary care to help people know what to expect in terms of side effects of medication, worsening of symptoms at the outset of treatment and withdrawal effects on discontinuation. People reported finding pharmaceutical drug company leaflets unhelpful and alarming. Given the time pressures on GPs, information leaflets would help the patient to improve take-up and maintenance of treatment. GPs could be supported by practice nurses and mental health professionals (such as primary care mental health workers) in the provision of information.

In a non-systematic review of issues around the under treatment of anxiety, Blair and Ramones (1996) highlighted that if people do not receive appropriate treatment from their GP, they may repeatedly present with a range of complaints or self-medicate with over the counter agents, alcohol or other substances. As well as inadequate assessment, often people do not seek help at an early stage and wait until their anxiety becomes overwhelming.

Deacon and Abramowitz (2005) found that CBT was an effective and acceptable long-term intervention compared with medication for people with mixed anxiety disorders (11% GAD), and that patients would choose CBT as a first choice of treatment, even if they had a recent history of taking medication. Some people thought that medication was acceptable and effective in the long-term but this depended on whether they were currently taking it – their attitudes were more favourable if they were taking medication.

4.4.7. GP perspectives

The primary care consultation is a two-person process in which the role and action of the GP can influence the patient’s involvement in the dialogue and the outcome of the consultation. Rijswijk and colleagues (2009) conducted a qualitative study using loosely structured interviews in focus groups comprising 23 family physicians from the Netherlands and identified barriers in recognising, diagnosing and managing depression and anxiety in general practice. This study found that there may be difficulties in agreeing a diagnosis with the patient, who may be more inclined to view their symptoms as having a physical cause. Without agreement as to the cause of the problem it was hard for effective treatment to proceed. Reaching a diagnosis was experienced as more problematic in relation to certain groups: the elderly, those with a different cultural background and those with limited verbal skills.

Rijswijk and colleagues (2009) also found that over long periods of time, symptoms of anxiety and depression may fluctuate, which makes it difficult to classify these disorders as distinct diagnostic entities. Assessment tools can be seen as useful aids to diagnosis, especially in determining the severity and burden of the illness. They could also help with monitoring progress and could be used by practice nurses as well as doctors. The time constraints of GPs’ work made it difficult to give adequate time talking to anxious patients. Patient education was felt to be empowering and follow-up by practice nurses was supported.

Patients could be resistant towards drug treatment due to fear of side effects and dependency, and there was often an inclination to discontinue treatment too soon. Finally, Rijswijk and colleagues (2009) reported that GPs found it difficult to balance recommendations in guidelines of a specific, often drug-based approach to treatment, with meeting patient preferences.

Bjorner and Kjolsrod (2002) described the pressures on GPs to be active in consultations and find solutions for their patients (who had a range of physical conditions, some of which were comorbid with anxiety, and who had been prescribed benzodiazepines and minor opiates), rather than adopting a ‘wait and see’ approach. As a result there was an over-emphasis on prescribing, especially in the face of people’s chronic difficulties. The study also found that doctors could feel embattled by patients’ needs and demands, resorting to high or medium levels of prescribing.

It should be noted that both studies reviewed in this section are non-UK. There has not been much comparable work done on GP perspectives in a UK population and the GDG concluded that this is clearly needed to explore the potential barriers to the accurate detection and effective treatment of anxiety disorders in the UK.

4.5. FROM EVIDENCE TO RECOMMENDATIONS

4.5.1. Experience of generalised anxiety disorder

The literature highlights that people with GAD have long-standing and often uncontrollable worries and negative thoughts, and that the worries are likely to occur without a specific reason, although people with anxiety tend to also worry about health concerns or their family and feel an inability to cope. Older people were more likely to worry about their health than younger people. The anecdotal evidence from the personal accounts also reveals that people with GAD experience long-standing symptoms. Most reported that GAD affected many areas of their lives, particularly relationships, self-esteem, daily activities, employment, work life and education.

4.5.2. Access and engagement

The literature suggested that few people with GAD perceive the need for professional help and even fewer seek it. When people with GAD do present to primary care the disorder is under-recognised, for a variety of reasons. Firstly, people with GAD may not associate their symptoms with a psychological disorder and may ‘minimise’ such symptoms in their presentation and they may not realise that their somatic symptoms are related to anxiety; second, primary care practitioners may not be skilled in recognising GAD; and third, healthcare professionals and the wider society may collude in the tendency for people with GAD to minimise or trivialise their symptoms. The personal accounts also suggest that GAD may not be recognised initially, or the symptoms may not be taken seriously. Again, this may be because the person with anxiety minimises the symptoms, or that professionals do not recognise the seriousness of the presentation.

It was agreed by the GDG that appropriate training of primary care practitioners should help to improve the recognition of GAD and reduce the tendency to misrecognise or minimise symptoms. Healthcare professionals should be aware that people with anxiety may exhibit reassurance seeking behaviours and that trust, a non-judgemental approach, collaborative working, and engaging the person from the outset are important in establishing a therapeutic relationship.

There was an expressed need for information about GAD and its treatments in both the reviewed literature and the personal accounts. Lack of accessible information may be a particular issue for people from black and Asian minority ethnic groups. Both the literature and the personal accounts also highlight the importance of self-help, support groups and help lines for people with GAD so that they can talk to people with similar experiences.

4.5.3. Experience of treatment

The literature indicated that patients’ experience of previous treatments (both psychological and pharmacological) played a strong role in treatment preference. People’s experiences of drug treatments were mixed; some reported side effects that were similar to their anxiety symptoms and non-adherence to medication was common. People felt that if they were given more information about their medication they would be more able to comply with their course of treatment. Some people with GAD found medication helpful and relied on it to function in important parts of their life. They did, however, worry about side effects and long-term dependency on drugs and attempted to either reduce their dose or stop taking the medication altogether. Most people, however, felt that they could not do this for fear of relapse – discontinuation symptoms could be interpreted as a return of their original anxiety. In three studies, there was an expressed patient preference for psychological treatment such as CBT, individual or group treatment and counselling over medication. Regardless of whether a person with anxiety has a history of taking medication, most found CBT an acceptable long-term intervention compared with drug treatment. Medication was also considered effective as a long-term intervention but this was more favoured by people who were currently taking medication.

The personal accounts highlighted a range of helpful approaches to managing anxiety, including both NHS and non-NHS prescribed treatments (psychological and pharmacological), but there was dissatisfaction about the lack of treatment options: antidepressants were frequently offered first leaving people to seek psychological therapy independently and/or privately.

4.5.4. GP perspectives

GPs felt that a diagnosis should not be made prematurely and that people should be given time to overcome their problems. Some thought that an accurate diagnosis was helpful for symptom-specific treatment. It could be difficult to reach agreement with a patient that the underlying cause of their physical problems might be psychological, which could make it challenging to agree on a treatment strategy, particularly in the elderly, those with limited verbal skills and ethnic minorities.

4.5.5. Families and carers

Issues for families and carers of people with GAD did not emerge from the literature and common themes could not be identified in the personal accounts, which offer different perspectives of being a carer. However, common principles about working with families and carers of people with common mental health disorders apply, such as providing accessible information, helping people to access support groups, and offering a carer’s assessment of the carer’s caring, physical and mental health needs.

4.5.6. Recommendations

Information and support for people with GAD, their families and carers

4.5.6.1.

When working with people with GAD:

  • build a relationship and work in an open, engaging and non-judgemental manner
  • explore the person’s worries in order to jointly understand the impact of GAD
  • explore treatment options collaboratively with the person, indicating that decision making is a shared process
  • ensure that discussion takes place in settings in which confidentiality, privacy and dignity are respected.
4.5.6.2.

When working with people with GAD:

  • provide information appropriate to the person’s level of understanding about the nature of GAD and the range of treatments available
  • if possible, ensure that comprehensive written information is available in the person’s preferred language and in audio format
  • offer independent interpreters if needed.
4.5.6.3.

When families and carers are involved in supporting a person with GAD, consider:

  • offering a carer’s assessment of their caring, physical and mental health needs
  • providing information, including contact details, about family and carer support groups and voluntary organisations, and helping families or carers to access these
  • negotiating between the person with GAD and their family or carers about confidentiality and the sharing of information
  • providing written and verbal information on GAD and its management, including how families and carers can support the person
  • providing contact numbers and information about what to do and who to contact in a crisis.
4.5.6.4.

Inform people with GAD about local and national self-help organisations and support groups, in particular where they can talk to others with similar experiences.

4.5.6.5.

For people with GAD who have a mild learning disability or mild acquired cognitive impairment, offer the same interventions as for other people with GAD, adjusting the method of delivery or duration of the intervention if necessary to take account of the disability or impairment.

4.5.6.6.

When assessing or offering an intervention to people with GAD and a moderate to severe learning disability or moderate to severe acquired cognitive impairment, consider consulting with a relevant specialist.

Identification

4.5.6.7.

Identify and communicate the diagnosis of GAD as early as possible to help people understand the disorder and start effective treatment promptly.

4.5.6.8.

Consider the diagnosis of GAD in people presenting with anxiety or significant worry, and in people who attend primary care frequently who:

  • have a chronic physical health problem or
  • do not have a physical health problem but are seeking reassurance about somatic symptoms (particularly older people and people from minority ethnic groups) or
  • are repeatedly worrying about a wide range of different issues.
4.5.6.9.

When a person with known or suspected GAD attends primary care seeking reassurance about a chronic physical health problem or somatic symptoms and/or repeated worrying, consider with the person whether some of their symptoms may be due to GAD.

Copyright © 2011, The British Psychological Society & The Royal College of Psychiatrists.

All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Enquiries in this regard should be directed to the British Psychological Society.

Cover of Generalised Anxiety Disorder in Adults
Generalised Anxiety Disorder in Adults: Management in Primary, Secondary and Community Care.
NICE Clinical Guidelines, No. 113.
National Collaborating Centre for Mental Health (UK).
Leicester (UK): British Psychological Society; 2011.

NICE (National Institute for Health and Care Excellence)

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