Peer Support: The Help Users of Mental Health Services Offer Each Other. (The views of 81 people on peer support) May 2008

Transcription

1 Peer Supprt: The Help Users f Mental Health Services Offer Each Other (The views f 81 peple n peer supprt) May 2008 Highland Users Grup can be cntacted thrugh Graham Mrgan, Highland Cmmunity Care Frum, Highland Huse, 20 Lngman Rad, Inverness IV1 1RY Telephne: (01463) hug@hccf.rg.uk

2 CONTENTS What is HUG Intrductin D users have anything t ffer ther peple with mental health prblems? Why is this supprt s special and hw is it different t prfessinal help? Can we hinder each ther? Develping a frmal peer supprt service Shuld peer supprters be paid? Where shuld peer supprters wrk? The skills a peer supprter needs What prblems may a peer supprter face? What supprt and prtectin d peer supprters need? Shuld peer supprters be well? What status shuld peer supprters have? Hw d we stp a peer supprter becming anther prfessinal? Hw wuld we measure the success f peer supprt? Cnclusin Appendices Appendix 1 - Supprt frm the cmmunity t make the transitin frm hspital t hme Appendix 2 - An Interview with 'Healthy Minds' (Badench and Strathspey) a grup whse members prvide mutual supprt t each ther Appendix 3 - Recvery and Systems Transfrmatin by Larry Fricks Acknwledgements 20 2

3 What is HUG? HUG stands fr the Highland Users Grup, which is a netwrk f peple wh use, r have used, mental health services in the Highlands. At present, HUG has 349 members and 14 branches acrss the Highlands. HUG has been in existence nw fr 11 years. HUG wants peple with mental health prblems t live withut discriminatin and t be equal partners in their cmmunities. They shuld be respected fr their diversity and wh they are. We shuld: Be prud f wh we are Be valued and nt be feared Live lives free frm harassment Live the lives we chse Be accepted by friends and lved nes Nt be ashamed f what we have experienced We hpe t achieve this by: Speaking ut abut the services we need and the lives we want t lead Educating the public, prfessinals and yung peple abut ur lives and experiences Between them, members f HUG have experience f nearly all the mental health services in the Highlands. HUG s aims are as fllws: T be the vice f peple in Highland wh have experienced mental health prblems. T prmte the interests f peple in Highland wh use r have used mental health services. T eliminate stigma and discriminatin against peple with mental health prblems. T prmte equality f pprtunity fr peple with mental health prblems irrespective f creed, sexuality, gender, race r disability. T imprve understanding abut the lives f peple with a mental health prblem. T participate in the planning develpment and management f services fr users at a lcal, Highland and natinal level. T identify gaps in services and t campaign t have them filled. T find ways f imprving the lives, services and treatments f peple with mental health prblems. T share infrmatin and news n mental health issues amng mental health service user grups and interested parties. T increase knwledge abut resurces, treatments and rights fr users. T prmte c-peratin between agencies cncerned with mental health.

4 Intrductin Ever since HUG was established peple with mental health prblems have spken ut abut hw much supprt fellw users and patients ffer each ther. We have lst cunt f the number f times that peple have said that they ften get a great deal mre supprt in the smking rms f New Craigs hspital than when they meet prfessinals fr mre frmal treatment. In many ther areas and cuntries peple with mental health prblems have repeated this theme. In sme cuntries (especially New Zealand and the U.S.A.) this has resulted in successful prjects being established that build n the supprt and experience that users can ffer. These prjects are ften knwn as peer supprt prjects r services. In them users are trained t becme paid peer supprters wh help fellw users n their jurney f recvery. In recgnitin f the success f these srts f prjects the Scttish Gvernment in its dcument Delivering fr Mental Health made a cmmitment t the develpment f peer supprt services which wuld emply paid peer supprters. In Highland a frm f peer supprt has already been pilted n tw ccasins as part f the Transitinal Discharge Prject (a research prject run by Stirling University in partnership with New Craigs Hspital, and riginally develped in Canada). In this prject mental health service users supprted current patients in their discharge frm hspital back int the cmmunity and beynd as part f a range f interventins t make the mve easier t manage. HUG had sme invlvement in this but was nt a partner and was pleased that the evaluatin f these pilts shwed that such an apprach was helpful. Hwever despite this the Transitinal Discharge Prject never became a mainstream service and wasn t cntinued. In 2007 we decided t lk at the idea f peer supprt in mre detail; bth t explre ur wn belief that we d have a lt t ffer each ther but als t find ut frm ur members what srt f service, if any, we wuld like t see established in Highland in the future. We met in ur 13 branches and held discussins with the peple present abut these ideas using a series f prmpts fr cnversatin. These discussins were written up and then turned int this reprt which was apprved by the HUG Rund Table (which is the HUG steering cmmittee). In ttal we invlved eighty ne peple in the meetings. Mst peple, whilst being very aware f the supprt we can ffer each ther, had little r n knwledge f the peer supprt prjects that already exist and s these discussins were based arund the basic issues that we feel need t underlie the develpment f these srt f services. 4

5 D users have anything t ffer ther peple with mental health prblems? There was almst unanimus agreement that we have a great deal t ffer each ther and that we already d s. In the netwrk f Drp In Centres and Training and Guidance (TAG) units, amngst scial netwrks f users, in self help, advcacy grups and ther grups such as Healthy Minds and N Mre Secrets peer supprt is a daily activity that largely ges un-remarked but which greatly enhances the lives f fellw peple with mental health prblems. In this we ffer the rdinary cntact and cmpaninship that is basic t the very essence f being human. Hwever, as users, we are ften trubled r sad r in crisis and in these circumstances, as well as the everyday, we ffer supprt, we ffer a listening ear, we ffer scial cntact, stp islatin and prvide advice, cnversatin and understanding. We ffer a shared experience and empathy, ideas and encuragement t help peple in the situatin they find themselves in. We prvide mral supprt and help each ther develp a vice in ur treatment, we accmpany each ther t meetings that we are anxius abut and imprve each thers cnfidence. By ding things tgether and learning frm each ther we learn new skills, gain new friends and may ultimately find paid ccupatins. We supprt each ther, prvide cmpany, a shulder t cry n and the pprtunity t have fun and laugh tgether. We can g int a drp-in-centre feeling very dwn and then cme back hme full f laughter. By ffering these things we share experiences and prmte kindness, hpe, penness, strength, trust and friendship. This can help us with ur mtivatin and help us n the path t recvery; by being inspired t try ut new things and by finding ut frm each ther what wrks and what desn t. Just sitting and listening can be a pwerful gesture. Ging shpping tgether r ding smething we enjy, such as music r creative writing, can help us appreciate and get n with ur lives. Ding things tgether in grups can be a great help. Why is this supprt s special and hw is it different t prfessinal help? The knwledge that we have been thrugh similar experiences can create an immediate bnd and sense f trust that we cannt find elsewhere. We find that we can be mre pen t each ther in ways that we may nt with prfessinals r ther peple wh haven t experienced mental illness. We ften feel that when we are in the cmpany f fellw users we will be free f stigma, and that the judgemental attitudes we smetimes experience frm thers will be absent. We find that we dn t have t explain urselves as an understanding f what we have been thrugh already exists.

6 We ften mentined the cliché, We ve been there, dne that, gt the T shirt which, t mst f us, explains it all. Other ways f explaining the cnnectin are: The shared experience f having seen the black times and knwing what it is like in a crisis. We have all been t the same place, althugh alng different pathways s we can help each ther thrugh ur knwledge f each ther s jurney. If yu are with peple with mental health prblems then yu can all laugh and jke n a level playing field. Peple dn t understand the self-cnsciusness r extra insecurity with mental illness. Yu can feel made f glass and thers dn t understand it but here yu can drp the mask. Because we have these experiences we may be able t encurage and inspire each ther. Because we are all at very different stages in ur recvery we can help peple understand that there is a chance f a better life. Because we ften d similar things when we are ill we may, thrugh that experience, have an insight and perspective that can t be fund elsewhere. One thing imprtant t us is that in each thers cmpany we ften n lnger have t put up a frnt r keep up a mask fr ur wn prtectin. This is smething that we may nt be able t d with ther peple in ur lcal cmmunities. We may feel very vulnerable and wary f the cmmunity we live in and may find refuge and cmfrt when we meet peple with similar experiences. By being able t help each ther ut we nt nly demnstrate ur respect fr each ther we als enhance ur wn sense f self-wrth. The things that we ffer can be different t thse that prfessinals have t ffer. We ften have a great deal f time t give, which they rarely d. We aren t meeting targets, we may have a better insight and are perhaps less likely t judge and we have n paper wrk t deal with when we leave each thers cmpany. It is a different relatinship; we are friends wh happen t help rather than therapists and as such we see each ther because we want t, we share phne numbers and experiences and tell each ther things that we may be reluctant t reveal t a prfessinal. We may be in a psitin t be mre spntaneus and take mre risks and prmte greater freedm and an absence f the srt f rules that prfessinals may bth have t live by and prmte. Despite a number f us saying that prfessinals may nt have the depth f persnal insight, the time t spend with us and may be restricted by prfessinal bundaries in hw they interact with us, many f us were at pains t pint ut that the vast majrity f prfessinals have a great deal t ffer us and can be the key t ur grwing wellbeing. We als knew that, whether they are pen abut it r nt, many prfessinals have als experienced mental health prblems themselves and ften have the very understanding we smetimes assume they dn t have. In fact, fr thse prfessinals wh d prvide care, and are als pen abut their wn experiences, we felt that they may already be prviding the enhanced srt f service that peer supprt is smetimes perceived t ffer. 6

7 A few f us pinted ut that the divisins we create, thrugh categrising each ther, bscure the fact that we are all individuals with different views and skills. Mst f us in sme way, have smething t ffer, whatever ur backgrund r label. Can we hinder each ther? A very small number f us felt that the imprtance and cnnectin that a shared experience f illness prvides means that, whatever ur relatinship, we cannt see peer supprt as anything ther than beneficial. The great majrity f us disagreed with this. There are all srts f circumstances in which as peers we can inadvertently damage each ther. We ften exchange infrmatin and give advice and althugh everyne has a right t d this, the knwledge that we have may nt be crrect and, given in the wrng circumstances, has the ptential t create a lt f damage. We can be vulnerable t ther peple; their sadness may prvke ur wn sadness, their descent int crisis may trigger ff ur wn crisis and the death f fellw users can be as hard as lsing a family member. We are nt always as cnsistent as we might like t be, thrugh n fault f ur wn illness and the wrld ur illness creates can make it hard f us t be there when we may be needed by thers. It may be gd t mix in a drp-in-centre but it may be a misplaced trust that invites any fellw user int ur wn hmes t cmbat ur islatin when we are als pen t explitatin. Smetimes ur wn need t help may bscure frm us the reality f what wuld really help smene else, ur wn need fr supprt may make us at times a burden fr fellw users t help with, ur wn need fr cmpany may ccasinally make us veruse the phne numbers fellw users have given us. Our need t be helpers culd make us take ver ther peple s lives and unintentinally make them dependant n us. The damage caused by ur wn experience f mental ill health may als smetimes make it hard t supprt and share with fellw users. Sme f ur relatinships may be turbulent but may assume an even greater significance if we rely a great deal n anther user wh may als be vulnerable. When we are in crisis we may have a great need t cntact ur peers fr help but they may nt have the resurces r resilience t prvide this srt f supprt at delicate times such as this. Hwever, the fact that a relatinship has its ups and dwns and may be draining desn t necessarily mean that it is damaging; by interacting we grw and take risks and relearn scial skills as well as learning t stand up fr urselves. 7

8 Smetimes the tensin and emtin in the places we meet can be difficult t deal with and the wear and tear f high emtin grinds the benefits f peer supprt away. Hwever if we have a persn, such as a prfessinal, wh can take n sme f the emtinal intensity n ur behalf then the supprt we can ffer each ther may flurish. The very fact that we are all users may mean that we becme ver-invlved. We have a great investment in mental health and what we are all ging thrugh and therefre we may becme disprprtinately damaged by the emtiveness f ur lives. When ur friends are very ill we may nt have any idea abut the safest and mst effective way f helping them. When we assume a cnnectin with anther user we may be mistaken; we may share sme experiences but equally many illnesses are different and as individuals we are certainly different; the bnd we assume that we may naturally have may nt always be there. Smetimes the negativity f what we experience and sharing that negativity with fellw users may, far frm inspiring us t find slutins, reinfrce ur wn pessimism. We may sink int the rle f invalid r becme cmfrtable with cnstant illness. In summary, this sectin f ur reprt clearly shws that we rutinely ffer peer supprt t each ther bth when we g t mental health facilities and thrugh ur wn netwrks. We believe that despite sme f the risks and limits this supprt can attract it is a psitive, natural and inevitable part f the gift we give each ther by the very fact that we live in each thers cmpany. This supprt is especially imprtant in that it is drawn frm a perspective f shared experience, mutual c-peratin and inspiratin. It is ften very different t the srt f therapy we get frm prfessinals and shuldn t be seen as a replacement t that therapy. It may nt even be anything t d with therapy but it is very much t d with ur quality f life and enhances the ther supprts we get fr ur mental health. We see the infrmal supprt we ffer each ther as very valuable and as smething that needs t be enhanced and built upn whilst acknwledging the very real limitatins that it can als have. Develping a frmal peer supprt service Despite a great deal f agreement abut the value f peer supprt we had a wide variety f pinins when we came t lking at the idea f making this a mre frmal part f ur recvery jurney. We discussed the idea f either having paid peer supprters and/r vluntary supprters as part f a peer supprt prject and had the fllwing bservatins t make: 1. A great number f us think the idea is a brilliant ne and lng verdue and that we shuld develp peer supprt prjects as sn as pssible. 2. There are wrkers within the mental health field wh are already users. When we find this ut we usually feel a greater sense f cnnectin and empathy with them. 8

9 They nt nly have skills t ffer but a shared cnnectin, which we value greatly. This is visible prf t us that peer supprt culd be very psitive. 3. Althugh we like the idea a great many f us wuld nt have the strength t becme frmal peer supprters urselves. It wuld create t much pressure and anxiety and may cause us t get ill again rather than enhance any bnds we create. 4. Frmalising what is in essence the ppsite f a prfessinal relatinship culd destry the very thing we value. We wuld becme anther srt f prfessinal, bund by the rules f ur wrk and prfessin. This wuld undermine the equality and infrmality n which peer supprt is based. T sme f us this is OK as althugh it wuld nt be like the everyday peer supprt we value s much it wuld be a helpful additin t ur care and if based in a set f standards based in the belief in recvery culd be very helpful. Hwever sme f us feel that it wuld undermine the very essence f peer supprt and wuld create barriers and prmte a status in the supprters that detracts frm the whle idea f a shared jurney. 5. Wh becmes the supprter and wh becmes the supprtee? And what des that signal t each persn? 6. A few f us wrried that this wuld be a way f prmting a new brand f prly paid wrk (r vluntary wrk) that wuld be a cheap way f prviding new services. 7. Althugh we have a lt t ffer as a result f ur experience sme f us felt that this desn t mean that we have the skills t deal with peple with mental health prblems n a mre frmal level. We may, in a well meaning way, d mre harm than gd. 8. Many f the peple wh prvide care and treatment t us have spent years and years learning skills t prvide safe and effective treatment. Why wuld peple expect that we wuld have these skills n the basis f ur past experience and why is there an assumptin that we culd learn them quickly? Maybe sme f us may actually damage ur supprtees because we lack the knwledge t help them effectively in their recvery jurney. Hwever with training and apprpriate recruitment this may nt be a prblem. 9. As users (especially in rural areas where we wuld prbably already knw each ther very well) we may becme ver invlved and end up with cnfused rles and bundaries which have t be develped t supprt us in this new psitin. 10. We may just cnvert urselves int a persn with all the disadvantages a prfessinal rle may carry and few f the advantages, and by becming peer supprters we may prvke resentment in the peple we end up supprting. 11. It may be better t enhance the cmpletely infrmal supprt we ffer each ther rutinely already. 12. Sme f us just didn t knw if it wuld be a gd idea. 9

10 The big difference is it s me and my friend; n ne can say I can t have a phne number, n ne can dictate the hurs we d it. It has the ptential t help peple, especially peple wh are mst ill and wh are islated. Thse wh are mst in need f supprt are thse withut carers; we need peer supprt then. Hwever if it becmes a jb then they have t be accuntable and mnitred. It culd be gd t develp it, it culd d a lt f gd as we knw we can help each ther and already d. But peer supprt is different t what we ffer each ther as friends. Shuld peer supprters be paid? Again we had a mixed view n this subject. Mst f us thught that if we are undertaking a frmal rle as peer supprters then that jb shuld be paid fr and the pay shuld reflect the value f what we d. Sme f us thught that a peer supprter may be bradly equivalent t a supprt wrker emplyed by a Cmmunity Mental Health Team but sme f us cmmented that althugh this may be the case we didn t think that supprt wrkers were paid enugh anyway. We felt that if peer supprt became a defined rle in a frmal service then it shuld definitely be paid. Quite a few f us said that we wuld like t have a jb like this. Hwever, sme f us felt that being paid t deliver this srt f rle diminished and devalued what we were ffering each ther and als wndered wh gets the pay when we prvide peer supprt; peer supprt is usually mutually beneficial s wh shuld be paid and wh shuldn t? T vlunteer and nt be paid. This is enugh, it wuld be very different if smene were paid. A few f us thught it wuld be an ideal vluntary psitin where we wuld learn new skills, help ther peple and help urselves. Sme f us felt that nce we had gained the apprpriate skills it shuld mve frm vluntary t paid wrk. Sme f us raised the pint that the sad reality is that as users we may ften have t take sick leave and that, at present, paid wrk desn t adapt t an erratic wrk recrd even thugh what we culd d when we are well may be very valuable. This didn t mean that we shuldn t be paid but did mean that it culd be cmplicated. Sme f us als said that pay shuld be made t reflect ur ability t mtivate and pass n skills but the pay shuldn t by its existence prfessinalise what we are ding. A few f us als said that whilst pay is gd when it reflects the value f what we d, it als brings pressure and respnsibility that we wuldn t have in a vluntary rle and in a practical sense may cause sme f us prblems with the benefits we are already receiving. This may mean that there shuld be a cmbinatin f rles that span the spectrum frm friendship t vlunteering t paid wrk. 10

11 Where shuld peer supprters wrk? We had n firm ideas abut this. Many f us thught that there shuld be psts created in Cmmunity Mental Health Teams fr this srt f wrk but a few f us wrried that if this were the case it may put sme peple ff r medicalise what we are ffering; it may create the wrng image. Sme f us thught that peer supprters wuld be ideal t help peple ut f hurs and in crisis (althugh sme f us als said that that wuld be the last place we shuld wrk). Sme f us said that they culd be very helpful with peple wh are newly diagnsed r discharged frm hspital. We had an idea peer supprters culd be based in the hspital. They wuldn t be assigned a supprtee but wuld be encuraged t mix with patients in hspital striking up cnversatins, inspiring, encuraging peple t get invlved in activities and breaking thrugh sme f the anxieties and bredm that sme patients may experience. Hwever a few felt that sme patients, especially if they are very ill, may find this a bit verwhelming. Sme f us said that finding ut that a peer supprter is smene yu already knw may cause prblems. Sme f us were keen fr peer supprt prjects t be based in and develped by user grups and a few f us liked what they had heard abut peer supprt in New Zealand and hped that we culd fllw their way f wrking. Hwever, a few f us were dubtful abut basing them in user grups and said that we need t guard against the pressure this may cause and the need t prvide adequate supervisin and safety. A lt depends n hw the user grup is structured. By basing peer supprters in user grups we may prmte equality and disslve the attitude f them and us. The skills a peer supprter needs A few f us said that by having been thrugh illness themselves peer supprters will inevitably, by that experience, have develped all that is needed t be a peer supprter. Hwever althugh we agreed that they needed persnal experience f mental health prblems mst f us had suggestins fr ther skills that may enhance their rle, including: Assertiveness skills and knwing hw t establish, and maintain, bundaries Organisatinal and administrative skills Cunselling skills and cmmunicatin skills Being warm and apprachable An awareness f bdy language The ability t make cnnectins with peple and find cmmn interests Being nn-judgemental, empathetic and having gd peple skills 11

12 Patience and understanding Knwing hw t put their persnal experience t psitive use Understanding their wn illness and ther illnesses An understanding f Mental Health First Aid and what t d in a crisis Anger and stress management Dealing with relatinships Peple als said it was imprtant that the peer supprter was stable in their wn mental health, and that they fcussed n recvery. What prblems may a peer supprter face? As we have said already, we wrried that peer supprters may get ver-invlved and may be unable r reluctant t develp the bundaries that they may need fr their wn prtectin. This may be especially the case in rural areas where we all knw each ther well. In sme places everyne knws where everyne else lives and what we d and dn t d. Develping bundaries in such places is a prcess that requires mutual agreement and cannt be impsed. We wrry that sme may be vulnerable t the suffering f thse that they are supprting. The same may ccur if they find that the assistance that they are ffering desn t help. There is a pssibility f creating dependency and n anther level as peer supprters we may nt be as reliable as we wuld wish t be because f the prblems ur wn illness may have created. The pressure f the jb and the need t d it well may make us ill again. What supprt and prtectin d peer supprters need? Peer supprters wuld need much the same srt f supprt as any ther mental health prfessinal r vlunteer. This wuld include: Financial supprt wages if paid, expenses and access t transprt if a vlunteer Supervisin and training, in such things as cunselling, understanding the mental health system and cmmunity care, Mental Health First Aid Supprt tailred t their wn needs prvided by apprpriate prfessinals The use f dedicated phnes and the ability t keep private life private Knwing wh t cntact in a crisis Supprt t create a divisin between peer supprt and friendship Access t back up and supprt fr situatins they find difficult Chice abut wh is the supprter and supprtee Emtinal supprt Vetting and screening f supprters Help in dealing with anger Help t stp them becming verprtective, and Guidelines in hw t deal with sme situatins. 12

13 Shuld peer supprters be well? Mst f us felt that in rder fr them t d an effective jb peer supprters shuld be generally well and their illness well managed, and be a lng way dwn the rad t recvery. Hwever a few f us challenged this idea and said that wellness and hw we view it shuld change. Fr instance, smene wh is a bit high r n the edge f illness may bring all srts f qualities, questins and ideas t their supprtee that cannt be gained if we insist n stability and nrmality. Witnessing ill health in a supprter may, far frm causing damage, enhance and bring t life a relatinship. In sme ways if we had a set f peer supprters wh were always well then we may be presenting a false image abut us and hw we live. The very fact that peer supprters are users means that sme will inevitably becme ill. T try t hide this may give the ppsite message abut the value f peer supprt t the ne we want t prmte. What status shuld peer supprters have? We felt that they shuld have equality with any ther mental health prfessinal and tended t put them n a similar level as supprt wrkers r hme carers. Hwever when we said this, sme f us said that these wrkers have traditinally had a lw status which we didn t agree with. We wanted t be sure that we didn t cnvey lw status n peer supprters t. A few f us said that they were s different that it wuld be hard t cmpare them. We pinted ut that smetimes the years f training that sme prfessinals have been thrugh may merit a gradatin f status. But thers said that first hand experience merits its wn status and recgnitin. Hw d we stp a peer supprter becming anther prfessinal? The use f this label is maybe unfrtunate but perhaps reflects a shrthand fr thse prfessinals wh we feel reinfrce the them and us attitude. Wh keep themselves distant frm us, may assume that they are superir t us and may believe that they have the right t tell us what t d rather than jin us in ur life and jurney. We didn t want users t give themselves a different status nce they became peer supprters but had a feeling that it may be inevitable. We did feel that simple things such as making the peer supprters aware that we didn t want this t happen, wuld be gd as wuld develping a set f values that peer supprters abide by. 13

14 We felt that ther peer supprters culd play a hand in this and als felt that we culd fster an atmsphere that prmtes the idea f peer supprtees themselves mving n t becme peer supprters. Equally it wuld be gd fr peer supprters t keep cntact with their wn netwrks f peers t reinfrce t them where they have cme frm and why they d what they d Hw wuld we measure the success f peer supprt? First f all we agreed that this wuld be difficult. But we suggested that we shuld ask everyne cnnected with the prcess fr their views n it and that this cnsultatin shuld have a particular fcus n users. We als felt that if we culd shw that the supprtees became healthier then this wuld help decide if it wrked. Equally if supprtees start ding things again and making cntact with ther peple then this culd be a sign f success. If supprtees make it clear that they dn t want t see a supprter then it is likely that it is nt wrking. But then again a different peer supprter may be the slutin t this. Cnclusin Many f us feel that a frmal peer supprt prgramme in the Highlands culd enhance the care that can be ffered t peple with mental health prblems. Sme f us disagree strngly with this but then sme f us disagree with a whle variety f mental health services. Peer supprt culd be a useful additin t the range f services that we can benefit frm but shuld nt replace ther services r be a service peple are pressured t use. Hwever, we d have very real cncerns that in rder fr peer supprters t prvide benefit t ther users they need adequate training and supervisin that builds n and enhances what they already have t ffer by merit f their shared experience. We think that a frmal peer supprter may help a lt but that by the very fact that they have a defined rle distances them frm infrmal supprt. We are unsure f the exact way in which peer supprt shuld be prmted and see merit in peer supprt prjects being based in user grups but als in Cmmunity Mental Health Teams r in the hspital. We culd usefully learn frm the way in which peer supprt has been develped elsewhere and by learning frm ther peple avid sme f the pitfalls that sme f ur members wrry abut. 14

15 APPENDICES APPENDIX 1: Supprt frm the cmmunity t make the transitin frm hspital t hme Supprting thers in the cmmunity and hspital when yu have yur wn prblems can seem at first a little daunting fr smebdy especially if they have had a perid f illness themselves recently. Hwever, with the right kind f supprt, safety measures and ready access t hspital fr the persn making the transitin frm hspital it can make the jb in hand far mre easy t cpe with fr the supprter. The first thing is that the supprter is cntacted thrugh the transitinal nurse and nt directly by the recipient. There are rules like females supprt females and males supprt males. I wuld like t add at this stage that n relatinships f an intimate nature are tlerated between the supprter and transitinal patient. Neither is the supprter r recipient allwed t g int each ther s hmes. This allws fr a safety gap which is needed in the case f the supprter wh can als be suffering slightly frm his/her wn prblems. I embarked n a pilt prject run in the Highlands between 2001 and 2002 by the Universities f Stirling and Western Ontari, Canada respectively. The first step is t meet the persn in hspital alng with the transitinal nurse and the cntact number is given t the supprter s that telephne cnversatin can be established up t 3 hurs a week r s depending in the circumstances. Abut nce a week r s a meeting is arranged in a public place. The buddy prcess then cntinues fr a set perid f time until the patient is ready t get by with a reduced perid f supprt. Knwing that yu can talk t smebdy wh has gne thrugh the same srts f perids f illness and is empathetic encurages the relatinship between buddies. The supprter keeps a diary f hw he r she thinks things are ging and this is lked at by the transitinal nurse frm time t time. If things becme difficult the transitinal nurse can take ver fr a shrt perid r assign anther buddy. I have persnally seen peple benefit whm I have supprted and this has given me a sense f value. It is gd t see smene get better day by day wh might have therwise been kept in hspital lng term. It is als my pinin that this shuld neither reduce dialgue between cmmunity mental health teams and patients. If it can be seen that there wuld be definite safety measures and nt substitute measure then Peer Supprt in the Highland wuld take a giant leap frward. As we all knw the supprt starts in the hspital wards between patients as real life experiences are related. 15

16 Research papers abut the New Craigs transitinal discharge scheme include: An explratin f factrs affecting the implementatin f a randmised cntrlled trial f transitinal discharge mdel fr peple with a serius mental illness. Shirley MacIvr, F Camern, Reynlds W, Lauder W, and Veitch T Jurnal f Psychiatry and mental health Nursing. The effect f a transitinal discharge mdel fr psychiatric patients. Reynalds W lauder W MacIvr S Veitch T 2004 Jurnal f psychiatry and Mental health nursing APPENDIX 2: An Interview with Healthy Minds (Badench and Strathspey) a grup whse members prvide mutual supprt t each ther Our main activities and aims are t prvide lcal cmmunity supprt t peple cming ut f hspital r thse wh have mental health prblems in the cmmunity as well as peple wh are islated. We d grup activity and meet with ther peple t help prgress ur rehabilitatin We teach psitive cping strategies abut illness, abut recgnising the warning signs and health educatin and the prmtin f healthy lifestyles. The grup is als there t supprt peple wh feel ignred by the medical prfessin r whse treatment has been terminated. When a new member jins we meet with them and g thrugh the basic stuff f what Healthy Minds is abut but we dn t make it t deep as that can be ff putting. Pam will phne everyne up n Sunday night t say what will be happening each day f the next week. We get tgether in a members huse n Mnday nights and we discuss anything we want. We g fr a meal n Tuesday r have a games night r a quiz night and maybe n the Wednesday we g fr a walk. It s all ptinal and flexible we can change days and activities t suit everyne. The grup is abslutely brilliant. It s because f everyne wh is there. We talk t each ther but utside peple dn t talk t us; they think we are headcases. We knw abut things like sleep patterns, being islated, nt being able t answer the phne r get ut. We are bnding s much and we all realise the need t keep what we say cnfidential. Yu can t beat what we have. When I first came here I had had nthing fr mnths and then I met Pam and I have never lked back 16

17 We lk at life befre we became ill, at life nw and hw we see the future. We shw what we can d and have empathy with each ther because in different ways we have all been thrugh it. We knw what its like t shut the dr and never g ut r what its like t take panic attacks. Nw we have the discussin grup; it is s gd, everyne cntributes and gets it ut their system. We lk ut fr each ther and take peple t see the dctr if they need a cmpanin. We all have fun, we have a great time, we laugh tgether and we face challenges tgether. Simple things like exercise, ging fr walks, ging t the gym, aqua aerbics, cmplementary therapies; stuff that gets us ut the frnt dr. We are all available t each ther and keep in tuch n the phne. We try nt t put pressure n anyne r vice versa. It s all abut respecting each ther. We are all equal in the grup Peple can g frm being very quiet and in themselves t speaking and jking and laughing. We are all invlved, we all vte n ur aims and what we d. We all take part We use the cmmunity car t get peple in frm different villages as transprt can be an issue We phne peple up if they have been away fr a time, nt t pressure them, but t help them cme alng if they want t. We lk t see what everyne can ffer each ther. Everyne has skills, even if smetimes we feel that we can t d much, but pening the huse up ffering hspitality r making cffee is a skill t. Nrmally it all ends up in a giggle, the rapprt is excellent. When Pam wh des nearly everything had t g back t wrk due t the benefits changes we all realised we had t help ut t and in the end it made the grup even better. I get a lt frm it t it makes me happy seeing flk getting better and beginning t laugh. I ve created smething wrthwhile. When I gt ut f hspital I was very islated my c.p.n said What abut healthy minds? it tk me tw mnths t g but yu get such a buzz and after yu get ut and g fr a walk tgether yu cme back feeling high as a kite. 17

18 APPENDIX 3: Recvery and Systems Transfrmatin by Larry Fricks (edited by HUG) Beginning in 1999, Gergia was the first state in the cuntry t set up an independent service called Peer Supprt delivered by a trained wrkfrce f Certified Peer Specialists. Public sectr fficials and cnsumer leaders cncluded that, in rder t achieve stable funding fr peer-supprt services, the services wuld have t be develped in a way that made them eligible fr Medicaid funding under Medicaid s psychiatric rehabilitatin ptin. Accmplishing this bjective required melding tw cultures: the cnsumer recvery mvement with its infrmality, visin, and energy and Medicaid, with its cmplex bureaucratic requirements. The peer specialist rle is the pivt f Gergia s effrt t manage its services fr peple with serius and persistent disrders in a manner that prmtes cnsumer friendly recvery values. After tw weeks training, peers must pass a written and ral exam that demnstrates they have the wrking knwledge f a set f cre cmpetencies. Mre than 300 peers have been trained and certified in Gergia with the Peer Specialist s rle being t prvide direct services designed t assist cnsumers in regaining cntrl ver their wn lives and cntrl ver their recvery. The aim f peer supprt is t prvide an pprtunity fr cnsumers t direct their wn recvery, and t teach and supprt each ther in the acquisitin and exercise f skills needed fr management f symptms and fr utilizatin f natural resurces within the cmmunity. In additin t prviding direct services, peer specialists are trained t act as change agents in the mental health system, prmting strength-based recvery with their unique insight int self-directed recvery gained by their lived experience. The Gergia training curriculum was designed by Ike Pwell, Directr f Training fr the Appalachian Cnsulting Grup (ACG) based in Gergia. ACG has written a resurce kit fr natinal distributin and has trained peers in Hawaii, Suth Carlina, Michigan, Iwa, Cnnecticut, Wyming, Flrida, Massachusetts, Washingtn, Illinis and Texas. The Gergia and ACG natinal training fcus n the Five Stages in Recvery, and the training incrprates three things that cntribute t the disabling pwer f a psychiatric disability symptms, stigma and negative self-image. The five stages are five different ways that peple relate t the disabling pwer f a psychiatric diagnsis at varius times in their lives in regard t symptms, stigma and negative self image. The stages are: 1) verwhelmed by the symptms; 2) give int the diagnsis, see n pssibility and becme dependent n the system; 3) begin t questin hw much their lives are really limited by the diagnsis and hw much by their wn belief system; 4) begin t challenge what they had riginally seen, r had been tld, were limits; and 5) begin the prcess f mving utside r beynd the system fr their supprts. 18

19 The Gergia/ACG natinal training helps the peers t understand and identify each stage, hw peple get stuck, and interventins that enable peple mve n with their lives. Gergia s pineering wrk in peer supprt was driven by a very well rganized and utcmes-fcused cnsumer mvement. A statewide rganizatin the Gergia Mental Health Cnsumer Netwrk with a membership f sme 3,000 hlds an annual cnference every year. At that cnference five tp pririties are determined and, fr almst every year f the 15 years f cnferences the number ne pririty has been emplyment. This resulted in a statewide effrt that began in 1998 t mve 20 % f cnsumers in day treatment t cmmunity jbs with cmpetitive pay by the end f The gal f putting sme 2,500 cnsumers t wrk within tw years was nt nly exceeded, it was accmplished six mnths early. With a histric emphasis n emplyment that addresses the crushing pverty s many mental health cnsumers cnfrnt it is n surprise that Gergia cnsumer leaders were unanimus in advcating fr a new wrkfrce f Certified Peer Specialists t prvide peer supprt services. Gergia s cnsumer leadership exemplifies recmmendatin 2.2 f the reprt f the President s New Freedm Cmmissin n Mental Health (2003) regarding system transfrmatin. On page 37 f that reprt it states, Cnsumers wh wrk as prviders help expand the range and availability f service and supprts that prfessinals ffer. Studies shw that cnsumer-run services and cnsumer-prviders can braden access t peer supprt, engage mre individuals in traditinal mental health services, and serve as a resurce in the recvery f peple with a psychiatric diagnsis. Because f their experiences, cnsumer-prviders bring different attitudes, mtivatins, insights and behaviural qualities t the treatment encunter. Gergia s research f its data shws that peer supprt is bth cst effective and efficient with day treatment annual average cst per persn at $6,491 cmpared t peer supprts annual average cst per persn at $1,000. Over a 260 day perid, data frm the treatment plans f mre than 300 adult Medicaid recipients diagnsed with schizphrenia, biplar and severe depressin shwed a statistically significant imprvement in peer supprt services ver day supprt services in three utcme measures: symptms/behaviur, skills, and needs/resurces. 19

20 ACKNOWLEDGEMENTS With thanks t all the members f HUG, and ther mental health service users, wh cntributed t this reprt. Please feel free t phtcpy this reprt. The reprt can be supplied in large print r n tape. Hwever if yu use this reprt r qute frm it r use it t infrm yur practice r planning please tell us abut this first. This helps us knw what is being dne n ur behalf and helps us infrm ur members f the effect their vice is having. Fr mre infrmatin n HUG, r an Infrmatin Pack, call: Graham Mrgan Highland Users Grup c/ Highland Cmmunity Care Frum Highland Huse 20 Lngman Rad Inverness IV1 1RY Telephne: (01463) Fax: (01463) hug@hccf.rg.uk 20