Annual Review - Anxiety UK

Annual Review - Anxiety UK

Annual Review20071

ForewordIt has been another exciting year for the National Phobics Society asthe charity continues to expand and develop. This year has seen thelaunch of important initiatives as we seek to address every aspectof anxiety disorders. The NPS is strengthening links with partnersin terms of funding, service provision and research and we arebeginning to roll out training as we seek to raise the profile of anxietysufferers and improve the quality and availability of treatment.I would like to offer a word of thanks to all of the excellent volunteers,staff and supporters of the NPS. Like most of you, I am a sufferer andI understand more every day how vital the National Phobics Society isin terms of support, treatment and championing the cause of those ofus who find it difficult to make our voice heard.David Thomas, Vice Chair2

ContentsOur aims and objectives 4Patrons and staff team 5What happened in 2007 6Raising the profile of NPS 9Fundraising and finance 12Core services 13Where next? 153

Our aims:To promote the relief and rehabilitation of persons suffering from agoraphobia andassociated anxiety disorders, phobias and conditions, in particular but not exclusively byraising awareness in such topics.Put another way, we are all about helping people who are affected byanxiety.How do we go about meetingour aims of helping peoplewith anxiety?National Phobics Society, or NPS as we morecommonly known, works to relieve and support thoseliving with anxiety disorders by providing information,support and understanding via an extensive range ofservices including 1:1 therapy services and helpline,email and online support.We work regularly with external agencies andhealthcare professionals to improve the serviceprovision offered to those living with anxiety disorderswhilst also assisting with significant research studies inthe field of anxiety.Our BeliefWe strongly believe that those who have experiencedanxiety disorders are well placed to offer supportto others similarly affected because they are truly“Thanksfor yourtime. I wish Ihad contactedyou a yearago”able to understandthe impact anxietydisorders have onpeople’s lives.Because of our ethos,those who have personalexperience are central to thedelivery of NPS’ services and are integrally involved inall aspects of the charity from the Board of Trusteesthrough to our diverse team of volunteer practitioners,self help group facilitators and helpline workers.Although we are a ‘user-led’ organisation – that is, weare run by and for those with personal experience ofanxiety, we recognise that we can’t exist in isolationand that in order to achieve our aims we need to workwith others. Because of this we have developeda patron team comprising a range of highly skilledindividuals, all of whom are active in the world ofanxiety disorders! Without the support of our patrons,many of the exciting initiatives that NPS has embarkedon this year would never have got off the ground.4

NPS’ Patrons:• Professor Karina Lovell• Professor David Clark• Professor Paul Salkovskis• Professor Adrian Wells• Dr Raj Persaud• Dr David Baldwin• Dr David Wheatley• Dr Chris Williams• Ursula James• Dr Sam Cartwright-Hatton• Dr Fred Penzel• Professor Cary Cooper• Professor Malcolm Lader• Professor Robert EdelmannIn 2007, NPS’ staff team comprised:• Nicky Lidbetter – Chief Executive• Glenmore Nunes – Operations Manager• Clare Mayo – Development Officer (until 31August 2007)• Catherine (Cat) O’ Neill – Services Coordinator(from Sept 2007)• Dominic (Nic) Seccombe – Administration Coordinator(until November 2007)Each of our patrons bring a uniquecontribution to the NPS and we areindebted to them for their ongoingsupport and enthusiasm. Similarly, ourBoard of Trustees has overseen thestrategic development of NPS thisyear demonstrating considerable expertise andcommitment. NPS’ Board of Trustees throughout2007 comprised:• Danny Hulme – Chair• David Thomas – Vice Chair• Rose Beech• Amandip Kalar• Julie Kelly• Liz BradfordAnd finally, the NPS wouldn’t be the NPS withoutits small, but dedicated staff team and of course itsamazing team of volunteers (of which there are nowover 600).Grants and AwardsThroughout 2007 we were able to secure supportand assistance from a number of funding bodies,organisations and individuals including:• Department of Health – Section 64 grant• CN4M (Community Network for Manchester)• Manchester City Council – via the ‘CarersGrant’• Pfizer Pharmaceuticals• Lewis Family Charitable Trust5

So what happened in 2007?Like any year, 2007 was a very productive and busy year for the charity, with a number ofexciting new initiatives taking place. Similarly this year the hard work of the NPS staff andvolunteer team was rewarded by the receipt of several awards including the ‘Investingin Volunteers’ Quality Standard and a ‘Hope Award’. The latter is an award given by auser-led website: The website comprises a collection of personalexperiences from individuals affected by Irritable Bowel Syndrome (IBS) and therefore toreceive recognition from another service user-led organisation was fantastic.Investing in VolunteersInvesting inVolunteers is ahighly prestigiousquality standardand is awardedin recognitionof the workundertaken by anorganisation withits volunteers.Certainly NPS’volunteers arethe most critical part of the organisation; it is theythat are on the frontline of NPS’ efforts to help thosewith anxiety disorders and it is volunteers who enablethe NPS to offer such a diverse and comprehensiveservice to sufferers. It was therefore most satisfyingto see that our work as an organisation around strivingto deliver the best working environment and supportfor volunteers has also been recognised.“Living Lifeto the Full”online supportproject“I thinkits great thatan institutionlike yoursexists”In conjunction with theUniversity of Glasgow and ourpatron, Dr Chris Williams, a teamof volunteers from the NPS were trainedin the delivery of email support to site users of thelifeskills website: as part ofa research project which seeks to evaluate the impactof email support alone compared to those individualswho access the website whilst also receiving emailsupport. Over 20 volunteers have participated in thisproject and at the time of writing this report, over 100participants had actively registered with the project.The aim is to recruit in total 200 people to allow for agood sample size to be achieved. Our volunteer teamof ‘email supporters’ continue to provide support towhat is a very exciting research project.6

New Fact SheetsIn response to feedback that we received on ourhelpline and via emails received to our email supportservices we compiled three new fact sheets: one onfear of the dark (aimed at adults), another on fear ofthe dark (aimed at children) and a fact sheet aimedat those individuals who are caring for someonewho has an anxiety disorder. The latter fact sheet’sproduction was kindly supported by a small CarersGrant received from Manchester City Council.Facts about Anxiety DisordersNyctophobiaFear of the dark - ChildrenWhat is fear of the dark?Stressful events: Stressful events cannegative comments will not only tell thelead to a fear of the dark; for examplechild that fear of the dark is shameful, butany children will experience fears atparents deciding to divorce, or athey may also begin to feel afraid to tellsome time in their lives. One of thechange in school, moving home etc.anyone about their anxiety. Additionally,Mmost common fears that childrenagreeing with your child about their fear ishave is a fear of the dark. This is known as Other traumatic events may be also unhelpful as this can reinforce the ideaNyctophobia. Children have very activecontributing factors. These can that there is something to be fearful of.imaginations and as such are not always able include things such as having a bad Aiming to empathise with your child’s fearsto distinguish between what is real and what car accident, the death of a close (e.g. saying ‘I was afraid of the dark when Iis fantasy. Having a fear of the dark canfriend or relative, or an injury resulting was your age too’) can help to acknowledgepresent itself in many ways. One of the most in a child having to stay in hospital. that you understand that your child is afraidcommon ways that children manifest thisIt is important to realise that children do not without agreeing with (and subsequentlyfear is by being scared of going to bed and /think like adults! A child’s fear of the dark reinforcing) their fears.or sleeping in a dark room. This type of fearmay not be something that you, as an adult, What can I do to help?can cause a lot of disruption, not just to thecan rationally understand. More often thanchild, but to other family members whoThere are a number of things that you cannot it is a fear of the unknown quantity thatsleep in the same to help a child manage their fear:the dark holds. Similarly, as an adult, fearsWhy are some children affected about the dark can have a different impact It is important that you make sure that yourby fear of the dark?and association than they do for children, child sleeps in their own bed. While it may(this is explored more fully in the NPS fact seem the easiest option to let your childSome children will tend to be more fearfulsheet for adults on ‘fear of the dark’). sleep in your bed or for you to lay down withthan others. There are many factors that canyour child until they fall asleep, it is not acontribute to this including:What to tell your childgood idea. By giving into their fear in thisGenetic susceptibility: Some theories Encouraging your child to talk about what is way, the idea that there is something to besuggest that children can have a concerning them is one of the best ways of afraid of is reinforced. If your child does getgenetic susceptibility to developing supporting your child in managing their fears. out of bed to gain comfort in the night, theyfears resulting in them being more Sometimes, your child does not know what should be led back to their bed, offeredlikely to experience a fear of the dark. they are experiencing until they begin to support and encouragement and gentlydiscuss it. By encouraging your child to talk, urged to stay in their own room.Learned behaviour: Children learnyou may be able to get a better idea aboutfrom watching their parents and otherEncouraging your child to exercise andtheir fears and how serious they are. Some ofsignificant adults in their lives. Theyparticipate in games where they arethe ways that you can approach this includecan often ‘pick up’ certain behaviours,physically active can also be beneficial.examining carefully the fear in depth,including those of an anxious nature.Physical activity not only helps to reducewhether the fear of the dark ties in with anyanxiety but can also help to get rid of someDependency: Children can often other fears and what type of things yourof your child’s natural energy, making itbecome dependant upon a parent or child fears may happen. Talk to themmore likely that they sleep the whole nightsignificant adult. This means that honestly and openly about these issues. through. By carrying out some physicalsometimes, a child can feel helpless if This information can be very useful when activity your child will be more likely to getthat person is not around. This occurs trying to decide upon ways of helping your a good night’s sleep.most commonly during the evening child to confront their fears. It is verywhen a child is alone in their room. important that your child is aware that it is Maintaining your child’s usual daily routineThis can lead to generalised anxiety OK to be afraid sometimes and that(including mealtimes, regular activities andwhich can be particularly prevalent everyone gets scared- after all, a fear of thebedtimes) is one way of reducing stressat night when they are alone with dark is a natural response and we allwhich can exacerbate fears. Routines canalso be comforting for a child as a way oftheir fears.experience it to some degree!reinforcing their sense of security. Having anNegative comments concerning your child’s unstructured routine could make somefears will not reduce their fear. Conversely, children feel even less safe.Relapse Prevention PackNPS’ Relapse Prevention Pack has been supported by Pfizer LimitedRelapse Prevention KitThose of us who have been misfortunate enoughto suffer with an anxiety disorder but have thankfullygot to a stage in our lives where we feel our anxiety isunder control, will know the importance of learning to‘stay mentally well’. Relapse prevention packs, thatis information about how to stay mentally well andavert a relapse in mental state, exist for mental healthconditions such as schizophrenia, bipolar disorder andother moreserious mental health problems, however there wereno such kits that seemed available in a user-friendlyformat for those affected by anxiety. We thereforedecided to make the compilation of a RelapsePrevention Kit something that we would focus on in2007. We were fortunate to receive the support ofPfizer Pharmaceuticals who kindly funded the graphicdesign, printing and dissemination costs of this usefulkit (which is now also available as a download fromour website).7

Launch of thenew NPS websiteaward category.The website is fast proving to be the main point ofcontact for our service users with it attracting over300,000 hits on average every month. We havenoticed that following on from high profile mediacoverage, hits to our website in the correspondingmonth almost double. For example, in October, whenGMTV ran a feature on phobias giving our website asa ‘useful link’ and when BEST magazine ran a featureon ‘summer phobias’, again listing NPS as a usefulorganisation to contact, this resulted in many morepeople visiting the website.How do people find our website?This year we totally revamped our website! Thisproject was undertaken by David Rogers whoredesigned the whole site, painstakingly makingnecessary alterations to pages and implementing newfeatures such as a ‘search’ facility enabling site visitorsto search for specific items whilst adding sectionsdedicated to ‘children and young people’, ‘welfarebenefits and anxiety’, NICE (National Institute forHealth & Clinical Excellence) guidelines and conditionspecific information on health anxiety, compulsive nailbiting and compulsive skin picking.In fact David did such a good job onour website that he received formalrecognition of his work at thisyear’s IT 4 Communities AwardCeremony where he was afinalist in the ‘Best IT Volunteer’“Youmade me feelvalued. I amimpressed”We know exactly how people come to visit ourwebsite as our website hosts fortunately provide uswith a wealth of statistics relating to this very issue.People mainly visit our site as a result of visiting theBBC website’s health pages, BUPA and social anxietyUK websites as well as from doing a ‘google’ search.Although our website is great as it is, we are planningfurther additions and improvements over the comingmonths, and in the latter quarter of 2007, we werefortunate to secure the services of Stephen O’Shea,who is now our volunteer website developer. Stephenhas already started work on a number of projectsrelating to the website including adding shoppingcart functionality to the site, and addinguseful sections of information suchas links to Department of Healthguidelines for service users on CBTcompetencies alongside otheruseful information resources.8

Raising theprofile of NPS:This year we continued with our successful ToiletPhobia (TP) project which is kindly supported by theLewis Family Charitable Trust. In September, weappointed a new ‘Awareness Manager’ – CatherineO’Neill whose role it is to raise awareness of ToiletPhobia and other anxiety disorders amongstthe general public and key stakeholders, GPs,psychologists and other healthcare professionals ofNPS. Already Catherine or ‘Cat’ as she is more widelyknown has attended a number of high profile events,including a primary care mental health conference inCardiff as part of the Wales Alliance of Mental Health inPrimary Care initiative. Cat also presented on Children& Anxiety at Manchester Primary Care Trust’s WorldMental Health Day celebrations, which were focusedthis year on young people and mental health.It is true to say that Toilet Phobia is now much morewidely recognised thanks to our TP campaign andbecause of this, we hope that those who are affectedby a toilet related anxiety condition are able to accesshelp for their problem in a timely and effective manner.We were fortunate to attract high profile mediacoverage with a large article on TP being featuredin the Manchester Evening News and also the DailyExpress newspaper. We continued to providesupport to individuals affected by TP by maintainingthe TP web pages on our website, whilst also holdingregular peer and professionally led support sessionsin the dedicated TP chatroom. Similarly, we havesupported hundreds of individuals to access ourtherapy services, in particular our telephone CognitiveBehavioural Therapy (CBT) service.This year we undertook a range of activitiesspecifically aimed at raising the profile of the NPS. Inparticular, one of our volunteers, Christine Molloy,led on a fundamentally important piece of workwhich was to set about compiling a list of all PrimaryCare Mental Health Teams that are in operation inEngland. To say this activity was like getting bloodout of a stone, is quite frankly an understatement,but Christine persisted and today we now have afully functional database. Towards the latter part of2007 we sent out a comprehensive mail-out to allthese teams to advise them of the services that NPSprovides and which included a complimentary ToiletPhobia DVD and information booklet.Media WorkAs always, this year we dealt with hundreds of mediacalls, with on average the office receiving two mediaenquiries every day.Throughout 2007 we were fortunate to secure theservices in a voluntary capacity of Kevin Garwoodand Dave Thomas as media co-ordinators. Kevinin particular made some real inroads into the waythat NPS manages its contact with the media andproduced a media database whilst handling thenumerous media enquiries – sourcing relevant casestudies and liaising with professionals.9

On-line AdvertisingAs mentioned earlier in this report, the internet isincreasingly taking over from other forms of contactthat individuals have with ourselves and as aresult, we decided to apply for a ‘GoogleGrant’. Fortunately our applicationwas successful and as a resultwe have had a free listing on theGoogle website home page suchthat whenever anyone typesthe words ‘phobia’ or ‘anxiety or‘anxiety disorder’ into the googlesearch engine, the National PhobicsSociety’s details are listed alongsideorganisations and companies thathave paid to advertise in this way.Certainly the ‘google grant’ has increasedtraffic to the website significantly and we are verygrateful to ‘google’ for their support.New PatronThis year we werefortunate to securethe patronage of DrChris Williams. Chrisis a leading figurein the world of selfmanagementofcommon mentalGrants“I wouldbe lostwithout youguys”health problems and is author of the two popular‘Overcoming’ books on anxiety and depression aswell as the ever popular lifeskills websitewww.livinglifetothefull.comStrategically, NPS’ Chief Executive, Nicky Lidbetterwas asked to join the North West Commission onMental Health’s reference group. This has beenextremely useful as Nicky has been able to representthe views of people living with anxiety disorders atthese events.PsychologicalTherapiesIn addition to continuing to provideour extensive range of in-housepsychological therapies, thisyear we undertook a large scaleexercise which sought to elicit theviews of our membership on theprovision of psychological therapiesvia a questionnaire sent to all members.This project was set against the back-drop ofthe Government’s own drive to increase access tosuch therapies and the national campaign ‘We needto talk’ led by Mind and other leading mental healthcharities. The findings of the survey were numerousand included respondents stating that they wanteda choice in the way that their therapy had beendelivered (i.e. people stating that they would haveliked the option to have tried phone therapy but thatthis had not been a choice that had been madeavailable to them through their local NHS service).Also not surprisingly, many respondents stated thatdespite there being all the new initiatives around toincrease access to psychological therapies, many10

people were frustrated with the wait that they hadendured when trying to obtain therapy. Anothertheme that came out loud and clear was aroundrespondent’s frustration at being offered on averagejust six therapy sessions with many people statingthat they felt that they had only just touched thesurface of their problems and requiredmore sessions.Other important themes thatarose from the questionnairewere respondants’ completelack of awareness of NHSprimary care mental healthteams – not only of theirexistence but of whatservices they offer. Thiswas not surprising tohear given the almostmilitary exercise we had toundertake in order to getdetails of such teams earlieron in the year.Similarly, very few respondentshad heard of the NICE guidelinesfor depression or anxiety – again thisshowed a clear need for more work to bedone in this area by the statutory sector. We feelthat anyone affected by anxiety should be aware ofNICE guidelines and to this end, we have created anew section on our website which provides links tothe guidelines produced by NICE in the treatment ofdepression, anxiety and other common mental healthproblems.“Amazingresults – thetherapy I receivedhas changed my lifefor the better and Iam now ready tomove on”literature/information to ensure that it is up to dateand accurate. To this end, we have republishedour information pack and several of our fact sheetsincluding those on illness phobia, school phobia,claustrophobia, Irritable Bowel Syndrome and foodphobia.ResearchNPS continued throughout2007 to be formally involvedin a number of researchprojects including theREEACT trial – this is aRandomised Evaluationof the Effectivenessand Acceptability ofComputerised Therapy,and the National Institutefor Health Research’sProgramme to increaseequity of access to high qualitymental health services in primarycare. We have also continued to helpresearchers working in the field of anxietyto recruit participants to their studies throughoffering free advertisements in our national magazine:‘Anxious Times’ and free website advertising in the‘anxiety research’ section of our website.Whilst it is important to ensure that all of our serviceusers know about NICE guidelines, we have alsoundertaken several pieces of work this year whichhave been very much about updating our existing11

NPS’ Core ServicesIn addition to all the numerous activities undertaken as already described, throughout 2007we continued to provide our mainstream services which included:National Telephone Helpline:08444 775 774The helpline took over 15,000 calls this year and wecontinued to provide a service throughout the entireyear offering people affected by anxiety, alongsidehealthcare professionals etc, information and supportvia the helpline. The helpline is staffed entirely byvolunteers who give freely of their time to take callsfrom individuals presenting with a range of anxietydisorders and/or healthcare professionals, carers andfamily members.As the chart shows, the majority of our callscome from mobiles, followed closely by calls fromManchester and London (surprisingly the averagesare the same this year).Finally, throughout 2007 we remained an activemember of the Mental Health Helplines Partnership,and delivered a workshop on Technology andHelplines at a national IT and mental healthconference in London.Email Support Service19.3%MobileManchester16.7%This year our volunteers supported on average 10people per day via the NPS email support service.This service is proving to be a very effective alternativeto the helpline being particular popular amongstthose individuals who feel unable to talk about theirdifficulties over the phone.InnerLondon7.7%On-line ServicesOtherOuterLondon9%We provided on-line services not only through ourwebsite but via a dedicated ‘members only’ section ofthe site which offers users access to on-line contactslists and dedicated bulletin boards and chatrooms.47.3%13

“Thankyou for all yourhelp. I have felt likean embarrassment tomy family for such along time and its goodto know that whatI am feeling iscommon”‘Anxious Times’ MagazineOur quarterly publication: Anxious Times proved tobe ever popular amongst the readership with positivefeedback continuing to be received. The magazine isa lifeline to many – particularly those people who havesuch severe anxiety that it affects their ability to leavetheir home.Therapy ServicesThis year, we dealt with a record number of referralsfrom people wishing to access NPS’ psychologicaltherapy services. In 2007 we supported over 1050people to access therapy with over four times asmany individuals as the year before choosing toaccess therapy via the telephone. The results of aqualitative evaluation undertaken by researchers atthe University of Manchester of our telephone CBTservice are nearing completion and it is clear that thismode of delivery of therapy is becoming increasinglypopular.We continued to expand on the number of locationswhere therapy is available to access through ourin-house therapy services and now have therapistspracticing in over 180 locations throughout the UK.Specialist Helpline ServicesWe continued to provide specialist helpline services inthe following areas:• Panic attacks/panic disorder• Tranquilliser issues• Psychiatric medication (via a specialistvolunteer led psychiatric pharmacy team atManchester Mental Health & Social Care NHSTrust)• Psychology information line (via avolunteer consultant psychologist based atWythenshawe Hospital, Manchester)• Emetophobia (fear of vomiting)• Obsessive Compulsive Disorder (OCD)• Public speaking14

Self Help GroupsWe have continued to maintain a comprehensivelisting on our website of self help groups that arein operation throughout the UK. Similarly we havesupported the development of a number of anxietysupport groups in the Greater Manchester areathrough our partnership work with the organisation,Self Help Services ( year our volunteer workshopfacilitator, Joan Callaghan, kindly ranfour workshops in London andManchester on Self Esteem& Assertiveness and PublicSpeaking/Presentation Skills.All workshops were wellattended and we receivedvery positive feedbackabout the facilitator. Onemember in London gainedso much from attendingthe public speaking coursethat she has now goneon to set up her own publicspeaking self help group inLondon.Where Next?Certainly 2007 was an action-packed year for the NPSbut as ever we are keen to continue to build on ourextensive range of services whilst also taking a leadon raising the profile of anxiety disorders nationally“Thetherapist Isaw through theNPS was excellent.He had a gentle,encouraging mannerwhich inspiredconfidence.”by continuing to support statutory sector initiativessuch as the Department of Health’s Improving Accessto Psychological Therapies programme. We havedecided in 2008 to focus our efforts on makingservices better for children and young people affectedby anxiety and aim to embark on an ambitious projectto train mental health professionals so that theyfeel adequately equipped to offer support to suchindividuals. Certainly child and adolescent mentalhealth services in the UK at the moment are probablydevelopmental wise where adult psychologicaltherapy services were ten years ago and it is becauseof this that we feel our input into currentservice provision, and in particular,our taking the lead in the trainingof therapists to enable them tosupport children and youngpeople affected by anxiety ismuch needed.Another strand of workthat we intend to focus onthroughout 2008 is arounddeveloping servicesthroughout the countryfor individuals affected by‘driving phobia’. The needfor a specific service of thiskind was identified followingon from the large volume ofcalls received on the helpline after anational newspaper featured an article onthe subject. Whilst there are private driving phobiaservices in existence, we are aware that many ofour members are unable to access such servicesbecause of their cost. We therefore intend todevelop an accessible, low cost service in 2008 tomeet this unmet need.15

National Phobics SocietyZion Community Resource Centre339 Stretford RoadHulmeManchesterM15 4ZYTel: 08444 775 774Fax: 0161 226 7727Email:

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