levelup - listening to the voices of service users

7/26/2019 LevelUp - Listening to the Voices of Service Users

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Level-Up

Listening to the voices ofservice users: messagesfrom an arts basedinitiative delivered in anin-patient mental health

setting

Jez BuffinSchool of Social WorkUniversity of Central LancashireAugust 2011


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IntroductionLevel-Up is an arts based initiativerun as a partnership betweenAlison (Artists living in situationsof need) and the Mental HealthEquality Team. Funded by CentralLancashire Primary Care Trustthe project uses an arts basedmethodology to encouragepeople with mental healthproblems to tell their stories andascribe meaning to significant

life events. A range of differentmediums are used includingpainting, poetry, creative writing,modelling, photography andcomputer design. Used as part ofan assessment the methodologycan help to shed light on whatis important to individualclients and service users. Whenlooked at collectively theseindividual stories also start totell a story about what life is likefor people living with mental

health conditions and about thesynergies and tensions betweenthe worlds of service users on theone hand and service providerson the other.

12 sessions were delivered overa 6 week period to patients onan-patient facility in CentralLancashire over the summer of2011.

6 of the sessions were observedby the author in order to capturethe life of the project and toidentify and reflect back to theLevel-Up team and the hospitalward staff some of the learningfrom the project. The authorexplained verbally to participantswhat his role was. Ward staffassisted the author to gainpermission from participants touse material gathered from theobservations (including piecesof art work) in this report. Adraft version of the report wasshown to participants in orderto help them to understandhow the material that had been

gathered would be used. Not allparticipants consented and so notall material has been included.

The sessionsA typical session lasted about anhour and a half. The first sessionwas henna based. It began withan explanation of henna design,a discussion of how symbols areoften used in design and of howwe can often ascribe meaning to

symbols. Tattoos, for example,are permanent and are oftenused to make statements aboutthings that are very important topeople. The group were asked tothink about the kinds of tattoosthat they might design forthemselves. As people began todiscuss and draw the team madegood use of the opportunity todraw out lots of key issues. Itwas attended by 7 people, 2males and 5 females, althoughnot all participants stayed forall of the session: people tendedto drift in and out. Subsequentsessions built on the work ofearlier sessions. They were allattended by similar numbersof people, although the makeup of individual participantstended to vary. Some participantswho had attended previoussessions would work on thingsthey had done earlier, whereas

other new participants wouldwork on things for the firsttime. There was a core groupsof individuals who tended toattend most sessions but otherscame and went as new peoplewere admitted and others weremoved on or discharged. Thedoor to all sessions was alwaysopen and there was an informalatmosphere that allowed peoplefrom the ward to wander in

and have a look at what wasgoing on. At points this couldbe slightly distracting, but it alsoallowed people to come and goas they pleased.

Context andchallengesPreviously the Level-Upprogramme has been provided ina range of community settings,but this was the first time thatit had been provided in an in-patient setting. This presentedthe team with a number ofchallenges:

Patients in in-patent settingstend to be more unwell andsometimes have troubleconcentrating and remainingfocused. Not all participantswere able to attend allsessions, sometimes becausethey were unwell and somehad made attempts to selfharm in between sessions.Often patients are aware ofthe problems they have withconcentrating. In one session

for example, one of theparticipants who was asked tojoin a group activity asked tobe left to get on with her ownthing:

I never last long. Let me domy thing.

Patients tend to be moved on as

quickly as possible. Admissionsare often short so they tend tobe in out more quickly. Thisposes a challenge in terms ofbuilding up a relationship and arapport.

There is a high turn-overof ward staff which makespartnership working betweenthe Level-Up team and wardstaff difficult. This may havebeen the explanation behind

why in session 5 a number ofparticipants had been told thatthis would be their last session.This caused visible distress to anumber of participants.

AcknowledgementsMost importantly the author would like to thank the participants in the Level-Up programme forallowing the sessions in which they took part to be observed and for agreeing to allow copies ofthe work that they produced to be used in this report.The author would also like to thank the staff of the Level-Up programme and the staff of thein-patient unit where the work took place, without whom the programme could not have beendelivered.


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Concerns about patient safetyand risk management meansthat there are often restrictionsabout what individuals areallowed to have on the ward.Not all patients were allowedoff the ward and staff wereconcerned that materials leftin the activity room may be

trashed. While these concernsare understandable forexample, one week a patientdid conceal a hammer fromthe workshop and took itback to her room where sheused it to self harm and in oneinstance a canvas that had beenleft in the workroom to drydisappeared between sessions- such restrictions also made itdifficult to leave materials that

patients could have access toand use in between sessions.Risk management often placedrestrictions on activities aspatients needed a level ofsupervision that ward staffwere unable to provide.

The skills andexpertise of the

staffAlthough Level-Up is an artsbased initiative, the work is oftenused as a vehicle to promotediscussion about a broad rangeof issues. Often there areseveral discussions going onat the same time. There is avery personal feeling about thesessions. For example, at onepoint one member of the groupwas talking about the meaning

of the hat that she wore whichwas covered in badges, whileanother talked about his familyand another talked about thefact that she did not know whoher named nurse was. Theimportant thing is that the teamcreate a space for people to talkabout what is important to them.The conversations were skilfullyhandled by the staff team.They were gentle. People wereencouraged to talk and to focuson what was important to them,but they were not forced.The comings and goings ofindividuals both between andwithin sessions is a challenge, but

attempts are made to work withthese challenges. A new comerin session 7 exclaimed that shefelt that she couldnt stay andparticipate because the groupwas clearly already well formedand close. Staff spent timewith her to introduce her to thesession and to integrate her and

this was successful. She stayeduntil the end and participatedin a group activity and then insubsequent sessions.

The team showed great respectfor the participants and treatedthem with dignity. For example,when one participant wanted adrink of water, the team werequick to get her one. When thewater in the tap turned out to

be warm, they went out of theirway to make sure that she wasfetched a cold drink.

The team are good at going withthe flow. They are not rigidly tiedto a session. They are adaptableand flexible and well adept atgoing with whatever participantsbring. Two participants had beeninvolved in other forms of art andhad examples to show the teamback on the ward. They were

encouraged to go and get theseand the staff showed a genuineinterest in what they broughtback. Indeed the work that theybrought back was incorporatedin to subsequent sessions andused as part of the evolvingprogramme.

At the end of one session theteam had planned to take allof the work away with them to

scan it in to a computer so thatthey could use it for the nextsession, but it was clear that oneparticipant wanted to carry onworking on what she had startedto produce. This was respectedand the team left the work withher, electing to take a photoof what she had done instead,rather than deprive her of thechance to carry on working on it.

The team are also adept atfacilitating several differentactivities to go on at the sametime within the same session.The fourth session in particularwas marked by participants who

were working on different thingsthat they had begun in previoussessions using a variety ofdifferent mediums but also newmembers working on things forthe first time.

One participant found it difficultto join the group. She did not

like the noise and preferred towork quietly on her own. Thiswas facilitated.

Showing flexibility andadaptability was not at theexpense of remaining focussedand purposeful however.Despite deviations, the groupretained a focus on the keytasks - to produce images thatwere symbolic and reflective of

their experiences in the hospitaland of the issues that were ofmost concern to them. Thesessions are well managed andthe time is used productively.The team are good at buildinga rapport quickly and they usethis very effectively to encourageparticipants to open up. Some ofthe discussions are intimate andpersonal. The discussions are veryhuman, with staff sharing andgiving of themselves and their

own experiences.


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The narratives of theartOne participant designed a tattoowith the name of his wife anddaughter above his own and themotto Try harder. It symbolisedthe commitment that he felttowards them and he specificallylinked the words try harder totrying harder for them.Another drew a picture with

a bird and a cross. This was asymbol of her faith and of howimportant her faith was to her intrying to get through.

One drew a large question markwith different sections brokendown and different imageswithin it. The question marksymobolised the uncertainty thatshe faced.

I dont know when I am going. Ifeel anxious.

One section contained a flowerand represented the fact that

it was Spring. Another sectionrepresented her friends. A dotrepresented how isolated shefelt. The hill represented themountain that she felt had toclimb. Another section contained

bars, because she felt that shewas behind bars. The number3 represented the section thatshe was detained under and themoney sign symobolised the factthat she felt that she neededmoney.

This same person also later drewa large pair of wings with aheart, and the logo never losehope emblazoned across it.

Again it features the number 3,representing the section that shewas detained under. This timethe number 3 clips the wingswhich reflects how she felt aboutthe section.Another drew a picture of anursing badge with a line crossedthrough it. This symbolised thefact that she did not know whoher named nurse was. This led

on to a discussion about herfrustration about not beingable to get things done andnot knowing who she shouldtalk to about it. She becamefrustrated at this and said thatshe took this out on herself which

Listening to the voices of service usersThe sessions provided opportunities to gain an insight in to the worlds of service users in two distinctways. Firstly through the art work itself, much of which was purposefully directed so that it wouldreflect patient and service user experiences. Secondly through the incidental conversations thattook place during the sessions themselves, sometimes between Level-Up staff and service users andsometimes between service users themselves.


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led to feelings of anger. Thiswould lead her to cry. Later shedeveloped this picture so thatit contained other images tooincluding a half full bottle and abroken heart.One of the participants producedan image of a dog and cannabisspliff. This prompted a discussionabout cannabis use with theparticipant acknowledging that

his heavy use of cannabis hadperhaps not been helpful orproductive. The session createdspace for reflection. It wasimportant that some boundarieswere put in place around hiscannabis use as over use couldprevent him from getting thingsdone and could lead to thecreation of dangerous situations(for example, smoking while atwork). He also acknowledgedhow his highs (caused by smoking

up to 15 spliffs in day) led toperiods of lows when he was notusing. He said that he wouldinclude a motto with the imagechoose family over drugs.

Another drew a picture ofa spider with heavy stonedeyes. The spider was smokinga cannabis spliff but the spliffwas not intended to representcannabis it was intended to

represent the effects of theprescribed medication that hereceived which often left himfeeling out of it. He depicted aspliff because he said that peoplewould be able to relate to theeffects of this better.Pictures and paintings were notthe only form of art used. Oneparticipant took the opportunityto write a poem which describeshow she feels about her illness,about being in hospital and herfears about the future. It is full ofnegative thoughts and feelings.She describes how she feels asthough she has failed and mademistakes. She has regrets andhates herself. Her life is painful,a living hell. She has few friendsand few perks. She describes herheart as broken and she is fearfulthat if she lets people in they willhurt her. Self-harming appears to

be a way of making herself feelreal and her scars are a way ofshowing the world her pain. Shedoes not appear to believe thatshe will ever get better and is

left feeling disconnected, out ofplace and possibly foolish like aclown but without the circus.

Im back in hospital because Ive

failed

left behind as the recovery ship

sailed

mistakes Ive made, regrets I regret

most of which I can never forget

I really hate myself so much it hurts

it feels as though my life has no

perks

I get frustrated, angry as well

my life has become a living hell

friends are few and far apart

I need some glue for my broken

heart

Ive shared my corrupt and my pain

Ive struggled in silence and

suffered in vain

Ive let you in, please dont attack

or I fear Ill take a big step back

I hurt myself and break the seal

Its the only thing that makes me

real

suicide and self-harm corrupt my

soul

to feel loved would be my goalwhen pain and despair overtake

my fragile heart starts to ache

You do not know Im hurting or tell

that Im in pain

so Ill wear it on my body where no

words need explain

Ive been quite honest, Ive tried my

best

to get these thoughts from off of my

chestIve told you my concerns, my fears

and doubts

without having to scream, yell or

even shout

I often ask whats my aim, whats

my purpose

I feel like a clown but without the

circus

will there come a time when Ill be

free

probably not because Ive got BPD

The poem itself was lateranimated by the team.


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The 7th session was given over mainly to a group activity, encouraging participants to work on two largeshared canvasses, one representing things that were negative about life on the ward and one representingthings that were positive. The paintings were abstract using colour and unrecognisable shapes torepresent each in order to ensure that the ability to draw did not represent a barrier. The 8th sessionwas used to review the pieces of work and to discuss the key issues that lay behind peoples positive andnegative experiences of life on the ward.

The positive picture The negative picture

In terms of the artwork itself, thepieces were received with mixedfeelings:

I dont like either of them.

They are all too much.

For me that one makes mefeel high as a kite. There isa lot going on. It makes mefeel like I am off my head.

I like that one best. It lookslike something that youmight see in a gallery.

Gradually the participantsbegan to impute meaning tothe pictures and this lead to adiscussion about what was goodand what was bad about livingon the ward. The group re-calledthat when they had painted thepositive picture they had startedoff by trying to find somethingthat represented the privacy oftheir rooms.

Yes, and the circle representsyour room and the arrow islike people coming in to it.The lack of privacy.

A number of people talked abouthow the ward made them feelsafe.

It makes me feel secure in

here. It makes me feel safe.Not necessarily from myself,but from the world.

For others, this was not just aboutkeeping them safe, but alsoothers:

Its a lot safer in here. Youdont know what willhappen. Sometimes its

like people are deliberatelytrying to wind youup. Trying to make youretaliate. You want tobloody murder them. Itslike they want you to get alife sentence.

Key to a positive experience forpeople on the ward was their

interaction with staff. Somestaff seemed to be attentive andconsiderate (which was a positive)but others were less so.

You get people fromall walks of life. Peoplewho are here to do a joband people who are here

because they care.

There are people in herethat get a kick out of sayingno to you. No, you cantgo and have a cigarette.Well why not? Its no skinoff their face.

There are some people inhere that like restrainingyou.

Good staff were seen as thosewho had time for you.

If I was a mental healthworker I would re-assurepeople more. It happensin here sometimes but nota lot. I have a lot of upsand downs. If someone re-assures me it makes me feel

relaxed.


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Talking about the token systemthat operated for people whowanted to go and get a drink,one participant recanted howsome members of staff wouldsimply say, Ive run out, whereasothers would immediately go andget some more.

Pursuing a theme aroundconversations and inter-actionswith staff one person said:

There is more talk amongourselves than there is withstaff.

It would be good tohave more therapeuticengagement. Whether itsjust talking to you.

A lot of time was spent discussinghow boring and tedious much ofthe time on the ward was.

You sleep to make timepass.

The evenings are long. Theyare long, long evenings.

Its just some structureto the day that youwant. Doing somethingconstructive.

At home I would go to thegym from 8.00-9.30. Gohome, eat, watch a bit of TVand before you know it, it ismidnight.

It gets boring after tea.

Its like groundhog day inhere. You wake up, waitfor breakfast, wait for thegroup to start, then youwait for lunch and haveyour medication. If yourenot involved in any of theoff ward groups in theafternoon then all you dois wait for tea and wait forthe soaps.

Some members of the groupblamed staff for the lack ofactivities.

They are all lazy buggers.

Others however, recognised thedifferent pressures that staff wereunder.

I can see it from the otherside too. Staff are tied upall day completing CPAs.

You go and ask them forsomething but then theysay , In a bit, Ive got todo my CPAs first. And in

order to do that they havegot to find a computer firstwhich often takes them offthe ward.

All day nurses are filling outreports, things for tribunals,admissions, discharges,care plans and on top ofthat they have to attendmeetings.

These discussions show howimportant the relationships thatpatients have with staff areand how even seemingly littlethings, such as whether you areable to get a token for a drinkor whether you can go out for acigarette when you want to canmake a huge difference to howpeople feel about life on theward. Boredom and the lack of

activities was a major theme.

The narratives of theconversationsSometimes the things that peopletalked about incidentally gavekey insights in to what life on theward is like. As the commentsbelow suggest, sometimes peoplehad very different experiences

and feelings about life on theward. During a discussion aboutthe experience of being on theward one commented that:

My time in here has beenpeaceful

This was quickly and

contemptuously challenged byanother patient:

Peaceful! Peaceful!Mine has been a fuckingnightmare!

Boredom, powerlessness and thelack of respect shown by stafftowards patients all featuredsignificantly. The general sensewas of a poverty of existence asillustrated by the quotes below.

One participant said excitedly asthe pencils were given out at thestart of the session:

I dont think we have hada sharpened pencil since Icome in here.

Another who was clearly veryinterested in painting was givena supply of various resourcesthat she could use in betweensessions to carry on her work(for example, some acrylic paintsand a canvas). She beamed anddanced around excitedly:

Its like all my Christmasshave come together.


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One patient talked about how hehad gone out for a walk in thegarden area for an hour one dayand that while he was out all hisstuff had been moved to makeroom for another patient. He wasonly gone an hour and even thenwas only in the garden, but no onehad come to talk to him first. This

had left him feeling very angry.

Another talked about the storyof her admission to the ward andof how she now felt trapped.She was admitted as a voluntarypatient but now wanted to leave.Staff had told her that if shetried to leave they would sectionher however. She maintainedthat she was an adult and thatas long as she could understand

the advice that she was givenand make sense of it she shouldbe free to take or leave it and totake her own decisions. As it wasshe now felt tricked and trapped.

Things are likely to take along time to get sorted.

One talked about how the needsof staff seemed to come before

his own. One day when nothinghad been going on for agessuddenly lots all happened at thesame time. He had visitors andthe doctor arrived to do a wardround. He got told off for beingdisruptive as the doctor was avery busy man. He protested thathe hadnt done it on purpose.

A number of patients talkedabout the boredom of their

existence. During one session aparticipant asked if the materialsthat she was using could be leftbehind for her to continue towork with in the afternoon.

It will give me something todo for the rest of the day.

Several members of the groupcommented that some activitieshad been organised oneweekend that coincided with avisit from the Mental Health ActCommission. Normally nothinghappened at the weekend.

Group dynamicsIn the situation of the groupa number of dynamics wereobservable. There was clearlyan element of mutual supportas is illustrated by the discussionbelow in which one patient talksabout her anxieties about goinghome:

I have concerns aboutgoing home. Learning tobudget and maybe goingtoo quickly and not beingable to cope. Should I justgo do you think? Or shouldI leave gradually?

Another patient responded to

her, advising her that she shouldtake the advice of the ward staff:

Listen to the doctors. Theyknow what they are talkingabout.

The above discussion took placewhile the first patient wasdrawing a picture to represent

the uncertainty that she faced.Part of the picture was a dollar($) sign to represent her concernsabout money. The second patientwith whom she was talkingcommented on her work:

Its good you put that dollarsign ($). You talk aboutmoney a lot.

The first patient came back:

Do I?

Further evidence of thesupportive relationships thatcan develop within the groupemerged between two of thewomen who worked together

on a laptop, manipulatingimages that they had producedpreviously by hand in a computerprogramme.

One said of the other:

You helped me on thecomputer. I couldnt havedone it without you.

Later this same patient drew

a picture of the woman aboutwhom she had made theabove comment. Her friendwas represented as my ray ofsunshine.

In other sessions individualpatients were sometimes less welland were looked after by otherpatients who were less ill andwho would go and sit with themor ask how they were.

There was sometimes conflictwithin the group, but thiswas always well handled andmanaged, sometimes by staff,sometimes by other members ofthe group.

One participant had her phoneon and it kept going off. Shewas challenged by anotherparticipant:

Put your phone on silentwill you its annoying me.

During the introduction tothe first session one of theparticipants spent quite a bit oftime talking about henna andits use. The discussion moved onto Arabic, the use of Arabic, andhow to spell different words in

Arabic. This conversation riskedalienating other participants whowere excluded from it. The Level-Up team allowed some spacefor discussion but also skilfullybrought the focus back around tothe work.

In one session a participant gotup and started banging away onthe piano at one point. Othergroup members asked him tostop. One participant startedto draw on his arm. One of theLevel-Up team asked him tostop and he did. In another thesession, one of the participantsbecame frustrated at the


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difficulty that he was havingdrawing, feeling that he neededmore attention and help. Thiswas quickly spotted and remediedand additional assistance wasgiven.

How the activitywas received byparticipantsIt is clear from the commentsbelow that the participantsvalued the session. On a coupleof occasions the Level-Up teamwere late getting started. Onboth occasions they were greetedby one participant with:

Come on I want to getstarted. Where have youbeen. Ive been waiting foryou.

Others commented on thingsthey had got out of the sessions,often involving learning aboutthemselves:

I like having our work onthe wall out there. Ive justseen it. It makes me feelproud.

I have really enjoyed it andgot a lot from it.

I have realised that youdont always have to stay instraight lines - in art or life.

Youve all been great.

Since coming here...I didntknow that I had a talentfor art. I didnt think I wasany good. But it has givenme inspiration I have justbeen drawing and drawing.I cant believe the immensetalent that I have got, itsawesome.

You are easy going. Notjudging. Not laughing. Youare encouraging. You cando it.

Lessons to belearnedIt is clear from the above thatthe sessions have been effectiveat providing insights andunderstanding in to the lives ofindividual service users as well asto life on the ward. The sessions

have enabled participants todescribe things that are ofsignificance to them and haveclearly been both valued andenjoyed. As outlined in theintroduction, one of the purposesfor observing the sessions was tocapture the life of the project andto identify and reflect back to theLevel-Up team and the hospitalward staff some of the learningfrom the project.

Lessons for wardstaff and managersIt is clear from the group sessionthat focussed on the negativeand positive aspects of life onthe ward that the quality ofrelationships with staff are animportant factor in determininghow individuals experience life onthe ward. Under the stresses of a

heavy work load it must be easyfor staff to dismiss small patientrequests such as for a tokento get a drink from a machineas low priority. Seen from theperspective of the service userhowever and in the context ofbeing bored and powerless, howsuch a request is responded tocan have a significant impacton an individuals experience.The message for ward staff andmanagers is to remember thatlittle things are important. Forpatients it can often feel thatthe ward is organised aroundthe needs of the staff and thehospital, rather than aroundtheir needs. Examples of this canbe seen from the patient whofound that his room had beenre-organised to make room foranother patient without anydiscussion. The patient who feltthat he was told off for having

visitors at the time of the wardround is another example. Onepatient had to leave the sessionone week because she wasshaking too much. This was a

consequence of her medicationwhich she had been given justbefore the session started. Shewas frustrated as she could notmanage to complete the delicatework that she wanted to. Shewas upset that staff had not beenable to give her her medicationlater, after the session.

While it is acknowledged thatstaff are working in difficult andchallenging circumstances andthat they have a duty to ensurepatient safety and to managerisk, such procedures can oftenseem at odds with the notionsof a patient centred service.The flexibility of the Level-Upteam being able to respondto the interests and ideas of

the participants was in sharpcontrast to the inflexibility ofward based risk managementstrategies. Nowhere was thismore evident than when theLevel-Up team left resources suchas paints and canvases behindfor patients to use in betweensessions as it became apparentthat they would not be able togain access to them due to thelack of staff available to providesupervision.

The one thing that patients onthe ward seem to have lots of istime, but it was commented oftenhow unproductively that time isused. Boredom was a significantfeature of peoples lives on theward as they reported them. Staffresources and the use thereof isclearly a significant barrier here,particularly in the evenings andat the weekends. That said, it is

clear from observations that manyof the service users are themselvesextremely resourceful. It is easy tosee the label of a service user andto fail to see the talents and livesthat people have that go muchbroader than this. Thought couldbe given to how to encourageservice users to do more forthemselves, both individually andcollectively. It is clear that bonds often quite strong ones do existbetween service users and thatthis often leads to them lookingout for one another. Such bondscould be directed towards self-help and mutual support.


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Lessons for Level-UpThe sessions are clearly enjoyedand productive. The teamshould first and foremost hearthe message of success. Thereis lots in what they do that isto be commended. They arehard working, flexible, sensitive,caring and creative. They have asuccessful formula that can easilybe replicated in other settings.The lessons identified should beread in the context of this.

Lots of information wasgenerated in the sessions aboutwhat is important to people,what they made of theirexperiences and how they viewedlife on the ward. There areclearly potential lessons for ward

staff and managers, but in order

for these lessons to be heard andlearned it is important that theteam develop a mechanism tofeedback such outcomes to staffand managers. Currently suchlinks as do exist appear to be ofa largely operational manner that is, in order to facilitate thesessions to happen.

The team need to think moreabout the process for feedingback the contents of the sessionsin order to try to help improveexperiences for service users. Itis hoped that this report mightprovide one such vehicle to allowthis to happen.

A number of patients weredischarged from the ward before

the programme was completed.

Although arrangements weremade with one patient who hadbeen discharged to maintaincontact with the team and tocontinue to work on what he hadstarted in a community settinghe had not taken this offerup at the time of writing. It issuggested that more could be

done to facilitate the transitionfrom in-patient to communitysettings, perhaps arranging tomeet individuals at home in thefirst instance and to accompanythem in the service for the firsttime. Mobile phones andtext messaging may be othermechanisms for promotingcontact outside of the wardsetting.

levelup - listening to the voices of service users

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