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with a napkin within reach. It had been a yearand a hal since he had been invited to eat andmy aim was or it to be an eatingexperiencerather

than an assessment. He looked at the bowl, overto me, then back to looking straight ahead. Sit-ting closer I explained that we were going totry ice cream and made some excuse or limitedavours o vanilla or vanilla. I supported him tohold the spoon handle, load it and bring it up tohis mouth. Te whole process elt stilted initiallybut ater the third mouthul I wasnt guiding himas much. I deemed the clearing swallows naturalor someone who had not eaten or so long. Tere

was a slight increase in the rapidity o his breath-ing and I couldnt check voice quality so I was alittle cautious. I let it at three mouthuls or therst swallowing trial. When his swallowing was

initially assessed in September 2004 on the sameward he declined any oral intake. iming there-ore may be a key issue when carrying out PEGswallowing reviews.

Over the next three sessions James increasinglybecame enthusiastic about the whole process:

pulling the table closer when he saw me, lickinghis ngers and the spoon, picking ood up thathad allen on his top, pushing the plate away

when nished, pulling the lid o the ice creamand reaching or napkins. I looked at the oth-ers sitting around the dining room table, themusic playing, and I wondered what starting toeat again could mean or James? In ront o me

was the same man who barely looked at me orgestured when I rst met him. I saw the biggerpicture, not just about ood, but interaction andmotivation or communicating.

Team decision

I spoke with the multidisciplinary team regard-ing the slight increase in breathing and not be-

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SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUmN 20084

How long does it take toget a drink around here?

Antonia Charalambos makes the case for systematiclong-term dysphagia review of clients with acquiredphysical and communication disabilities whose socialisolation and dependence is compounded becausethey have been discharged nil by mouth.

ues to have ice creams but has not been able to beupgraded. Shortly ater, the speech and languagetherapy department decided that all people on the

continuing care wards should be reviewed, particu-larly those who were nil by mouth. Tis is when Imet James.

JamesJames was a 77 year old gentleman, who had a letmiddle cerebral artery inarct in August 2004 and

was now in a continuing care ward. Te medicalnotes also diagnosed some cognitive difculties.

A PEG was inserted shortly ater his initial hospi-tal admission and he declined any ollow-ups overthe next couple o months. James presented withsignicant receptive language difculties, unre-

sponsive to AAC, no verbal output and limitedgestures. No amily or riends had visited or madecontact since his stroke which placed limitationson a ull case history.

On our rst meeting in December 2005, Jamesused very ew gestures or acial expressions tocommunicate. I greeted him and he acknowl-edged my presence by breaking his line o visionor a moment to look at me. I suppose it couldbe a normal reaction at this point in Jamess lie.I considered the reasons or him to communicatein general and noted that he was moved by ahoist, PEG ed, had no visitors and there was littleknown social history or others to comment on.He intrigued me and, although cautious, I was

excited at the prospect o changing one aspect ohis lie. I took a quiet moment and consideredthe reasons or trialling oral intake with James: hesat upright all day, he had no recent chest inec-tions, he was awake and alert. As Crary & Groher(2006) say, In the acute stroke patient, the de-gree o alertness and physical endurance are keyeatures that indicate readiness to participate ullyin the swallowing evaluation process.

Te ollowing day I returned armed withice cream. Tis is a suitable choice because it issmooth and holds its shape on the spoon (i ro-zen) which helps sel-eeding and, being cold andtasty, it can trigger a prompt swallow. I placed a

table in ront o James, scooped out the ice creaminto a bowl in ront o him and placed a spoon

Aheck o a long time iyoure waiting at my localbut an even longer time

perhaps i youre dis-charged rom hospital with no oral intake, a PEGtube and a communication difculty. Te decisionto deem a client nil by mouth may be complex butcan be carried out promptly with management sys-tems in place. An equally complex but less guidedprocess is when and how that same clients swal-lowing is reviewed once discharged - i at all.

I decided to review two clients who were bothon long-term percutaneous endoscopic gastros-tomy (PEG) eeding ollowing a stroke. Jameshadnt had any oral intake or a year and a hal andMaria or six years. In this article I will explore thedecisions and processes that enabled me nally to

discharge one on a ull oral diet and the other ondesserts.Stroke is the largest single cause o severe disabil-

ity in the UK (www.dh.gov.uk, 2008). Gordon etal. (1987) reported that 45 per cent o those ad-mitted to hospital with a stroke had dysphagia. Analtered consistency diet may be enough to reduceany possible risks such as inection but or otherseating and drinking can sometimes be deemed toogreat a risk. I swallowing is unsae clients may beoered a preerred route o enteral eeding such asa PEG (Verhoe & Van Rosendaal, 2001). Tereis evidence that a clients swallowing does improveeven when they have an unsae swallow in theacute stages. Jameset al. (2000) note that when pa-

tients have a eeding tube placed in the acute stagesthey normally return to oral eeding 3 months poststroke. Gordon et al. (1987) reported that 87 percent o patients with stroke-induced dysphagia re-cover their swallow within 4 weeks.

I met James and Maria when they both had aPEG in situ and no oral intake. It all began orme when another man with a PEG, on the samecontinuing care ward as James, reached over, put aglass to his lips and drained it. Te water was be-ing used by the nurse to ush the PEG tube. Itcould be argued that, or him, it was the only wayto communicate that now was the time to reviewhis swallowing. Te nurses told me they got quite

a right and we soon received a call to assess him.My colleague reviewed this client and he contin-

READ THIS IF YOUARE INTERESTED IN

RAISINGEXPECTATIONSTHE POTENTIALIMPACT OF ONECHANGELONG-TERMRECOVERY

my aim was for it tobe an eatingexperience ratherthan an assessment

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SPEECH & L ANGUAGE THERAPY IN PRACTICE AUTUMN 2008 5

ing able to check or changes in vocal quality butemphasised how much more enthused he hadbecome. It was a team decision that he shouldcommence on trials o oral intake as he didnthave a signicant increase in shortness o breathand because o the positive impact on his qual-ity o lie. So I carried out ve trials o ice creamover two weeks. I then set out guidelines anda swallowing diary or nurses to complete ater

each lunchtime trial o ice cream or a week.Once the week was over and no concerns wereagged up I continued to trial other oods suchas a sot moist dessert in the same way I had ini-tially with the ice cream, with positive results.Ater three weeks o trials I set James up with

a meal o pured meat, carrots and mash atlunchtime when he was out in his chair and athis most alert. When he coughed twice on thepure, I took it away and had a re-think thereand then. Was he vegetarian? Was he too eager?

Was it too spicy? What was the consistency likeo the pured meat? Did he not like it? Maybehis skills would remain at eating ice cream?Ater trying some o the pured meat mysel, I

realised it was spicy. I decided to eliminate the meatpure rom the plate and try again with pured car-rot and mash. James tucked in. He completed themeal with no coughing and a prompt coordinatedswallow, then pushed the plate away and wipedhis mouth. James appeared to tolerate the purebut the coughing at the start and slight increase inbreathing pattern had highlighted to me that trialsshould be taken a slow pace.

I went on to trial uids by placing a glass ounthickened juice in ront o him. He nodded,picked it up, sipped a ew mouthuls then putthe glass down, wiped his mouth, olded thehandkerchie and put it on top o the glass. Heseemed to carry out the whole process very nat-

urally. Again, as I couldnt check his quality ovoice, I worked with the nurses or a week trial-ling him on normal uids. I hypothesised thathis swallowing had improved and thereore opt-ed or normal uids as opposed to thickened.

In March 2006, I discharged James rom mycaseload on a ull oral pure diet, sot moist des-serts and normal uids. Now he sits aroundthe dining room table on the ward, occasionallysmiles and gestures or more tea. He also startedgoing to the activity group where he is a keenpainter and potter. I elt like James had set a per-sonal milestone or me and I oten thought o

what would have happened i we hadnt reviewed

him, or i his ellow patient hadnt swiped theull glass o water

MariaAter I discharged James I was seconded to thecommunity team or a short while. I received aphone call rom Marias daughter who told methat her mother had not had anything to eatorally or six years.

Maria was 82 when I assessed her. She had hada right cerebrovascular accident in 2000 and aPEG inserted shortly ater the acute event. Mar-

ia now lived in a nursing home. She sat in herroom watching English television even thoughshe was a Cantonese speaker and her daughterreported that Maria had little understanding oEnglish. Maria and James were linked or me inthat not eating and drinking meant they weremore isolated than the others around them.Teir isolation was also compounded by dif-culty communicating due to aphasia, cognitivedifculties and / or a language barrier.

alking with the nurses I ound out that Mariasat out all day, was awake and alert, moved by ahoist, PEG ed at night and had no recent chestinections. I introduced mysel to Maria and

worked with her daughter to explain why I was

there. Maria generally sat in her room at meal-times, not in the dining room, so she had not hadany exposure to ood in the last six years.

Marias voice quality was clear with no oral in-take. She gestured and smiled at me. Similarlyto James I set out a table or her and presentedher with a dish lled with scoops o ice cream,a spoon and napkins. As with James, Maria re-quired support to load the spoon and bring itup to her mouth. She later took small licks othe spoon making mmmmm noises and re-peatedly saying thank you. I wasnt sure o theaccuracy o this rom someone with two or three

words o English but as she said it with a smile

and reaching or more, I took it positively. Herdaughter asked her how it was and as I waitedwith bated breath she said in a loud, clear voicetoo cold then nodded to having more.At clinical assessment her swallow was prompt,

her voice did not change in quality, there was noincrease in shortness o breath and the large grinticked my box. I didnt see a reason not to con-tinue on oral intake. Although Maria was hoist-ed she was able to maintain an upright sittingposture all day. PEG eeding occurred at nightso this didnt interere with any daytime tast-ers. Te nurse excitedly reported that she wouldnow be able to take Maria into the dining room,

which I was happy about, and this sealed the

deal on a weeks trial o ice cream at lunchtime.Back at the ofce I wrote guidelines and

drated a swallowing diary or a week or themto note amount o intake and any commentssuch as coughing or sel-eeding. Ater 7 daysI arrived back to see Maria and the same nursebeamed at me saying there were no concerns. I

was pleased to assess her at lunchtime sitting inthe dining room although I noticed that she wasbeing ed. I reinorced the importance o sel-eeding not only to reduce risks o aspiration butalso or Marias independence. Langmore et al.(1998) suggest that a dependency in being ed isassociated with multiple negative outcomes.

Unlike James, Maria was unable to tolerateother consistencies. We tried normal cold water

and slightly thicker juice but Maria was unableto trigger a swallow, held it in her mouth andreleased the liquid into tissue. She did the sameor warm sot moist desserts. I hypothesised thatshe didnt like the ood, had cognitive difcul-ties that may have impacted, or just wasnt readyto upgrade to other ood. I returned one moretime two weeks later when Marias daughter

was there. Her chest had remained clear and no

other concerns were being reported by nursingsta. Maria had started eating ice cream and /or yoghurt twice a day and I noticed that Maria

was eeding hersel now with no support.Although a diagnostic assessment such as vid-

eouroscopy could have enabled me to measurethe efciency o the swallow, note any residue inthe pharynx and determine i aspiration was oc-curing, it was not appropriate to use at this time.It would have meant transporting both Mariaand James to a neighbouring acute hospital,setting them up in an unamiliar environment

with posture and seating issues (as both were intilt and space chairs). Teir own environmentseemed to set them up with the optimum op-

portunity to do well. Teir cognitive difcultieswould also have impacted on the assessmentand any rehabilitation strategies such as posturalchanges. Also, as the acute event had happenedyears ago, the assessments posed dierent issuesthan they would have had in the acute stages.

Follow-up imperativeTe triggers or reviewing James and Maria

were accidental. When drawing together mythoughts I pondered as to how we as a proes-sion take orward systematic reviews o patients

who are nil by mouth, long-term PEG ed andperhaps aphasic. When people are unable toparticipate in decision making about eedingit makes it even more imperative that they areollowed up by another means. It brings about

the question o ethics and acting in a personsbest interests, particularly in light o the Men-tal Capacity Act 2005 (www.publicguardian.gov.uk).

Harper et al. (2001) highlighted how a per-sons dysphagia might resolve when they areno longer on a speech and language therapycaseload. Te Royal College o Speech & Lan-guage Terapists have guidelines or assessingpeople currently on a caseload who have dys-phagia. Tese conrm (2005, p.71), Te swal-low unction may improve with time, allowingor some guided return to oral eeding or, insome patients, removal o the eeding tube.

Te National Stroke Strategy (2007, p.45)recommends an annual health and social care

I often thought ofwhat would have hap-pened if we hadntreviewed him, or if hisfellow patient hadntswiped the full glass ofwater

I reinforced theimportance of self-feeding not onlyto reduce risks of

aspiration but also forMarias independence.

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had an eect on their eating and drinking buton others aspects o choice, interaction andindependence. At times accidents can bringabout positive outcomes but, i I was nil bymouth and long-term PEG ed, Id rather notleave it to chance beore I was reviewed.

Antonia Charalambos is a speech and languagetherapist with Camden PCT, e-mail antonia.charalambos@camdenpct.nhs.uk.

CASELOAD MANAGEMENT

SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUmN 20086

REFLECTIONS

DO I RECOGNISE WHEN

OFFERING SYSTEMATIC REVIEW

IS PREFERABLE TO INFORMATION

ABOUT RE-REFERRAL?

DO I SEE THE PROGNOSTIC

OPPORTUNITY OF TURNING AN

ASSESSMENT PROCEDURE INTO

AN EXPERIENCE?

DO I THINK ABOUT WHAT IT

WOULD MEAN TO A CLIENT TO

HAVE A PARTICULAR ABILITY?

What questions does this article raise foryou? Do you have any form of system-atic review for clients who have beendischarged? Let us know via the Autumn08 forum at http://members.speechmag.com/forum/.

ReferencesCrary, M.A. & Groher, M.E. (2006) Reinstituting Oral Feeding in ube-Fed Adult Patients with Dysphagia,Nutrition in Clinical Practice21, pp.576-586.Department o Health (2007) National Stroke Strategy. Available at: http://www.dh.gov.uk/en/Publicationsand-statistics/Publications/PublicationsPolicyAndGuidance/DH_081062 (Accessed 30 June 2008).Gordon, C., Langton-Hewer, R. & Wade, D.. (1987) Dysphagia in acute stroke, BMJ295, pp.411-414.Gustasson, B. & ibbling, L. (1991) Dysphagia, an unrecognized handicap,Dysphagia6, pp.193-199.Harper, J.R., McMurdo, M.E. & Robinson, A. (2001) Rediscovering the joy o ood: the need or long-termreview o swallowing ability in stroke patients, Scottish Medical Journal46(2), pp.54-55.Intercollegiate Stroke Working Party (2004) National Clinical Guidelines or Stroke. 2nd edn. London: RCP.

James, A., Kapur, K. & Hawthorne, A.B. (2000) Long term outcomes o percutaneous endoscopic gastros-tomy eeding in patients with dysphagic stroke,Age and Ageing27, pp.671-676.Langmore, S., erpenning, M., Schork, A., Chen, J.., Murray, D., Lopatin, D. & Loesche, W.J. (1998) Pre-dictors o aspiration pneumonia: how important is dysphagia?, Dyphagia13, pp.69-81.Royal College o Speech & Language Terapists (2005) Clinical Guidelines. Bicester: Speechmark.Verhoe, M.J. & Van Rosendaal, G. (2001) Patient outcomes related to percutaneous endoscopic gastrostomyplacement,Journal o Clinical Gastroenterology32(1), pp.49-53.

resourcesWe Are Not StupidPeople First Lambeths book about how people with learning difculties

would like to be treated.

6.50, tel. 0207 642 0045, e-mail ino@peoplefrstlambeth.org.ukVisionPurchases equipment, goods or specialist services or children in the UK

who are blind, visually impaired or dyslexic.www.visioncharity.co.ukSpeech, Language and Communication FrameworkCompetency-based Framework to help everyone who works with childrenevaluate strengths and areas or development.www.communicationhelppoint.org.ukLattitude Global VolunteeringCharity coordinating overseas gap year voluntary work placements oryoung people rom 17-25.

TriveTrive, which promotes the advantages o gardening or people with a dis-

ability, has developed a leaet with mental health charity Mind highlight-ing the power o gardening to improve emotional wellbeing.www.thrive.org.uk/gardening-to-improve-emotional-wellbeing.aspHuman Rights

A revised booklet rom the Ministry o Justice gives people with learningdifculties advice about what the Human Rights Act means or them.www.justice.gov.uk/docs/human-rights-act-learning-disabilities.pdDownsEdBooks now available online include Speech, language and communica-tion or individuals with Down syndrome An Overview (2000) by SueBuckley.www.down-syndrome.org/inormation/language/overview/?dm_i=319435096Easyhealth

Accessible health inormation or people with learning disabilities.www.easyhealth.org.uk

check and the National Clinical Guidelines orStroke state (2004, p.47), Te need or en-teral eeding should be kept under review andthe tube removed when no longer required.However, there is no clear, standard get outclause or people who have chronic acquiredphysical and communication disabilities, arenil by mouth and have no opportunity to dem-onstrate to those around them that their dys-

phagia may be improving. It would be useuli time could be built in or a speech and lan-guage therapy swallowing review when a PEG

eed is reviewed by a dietician or a PEG tube isreviewed by a medical team.

Strong team working and negotiation withthe nursing sta on guidelines and diaries isintegral to my role in reviewing clients dys-phagia. Gustasson & ibbling (1991) com-ment on how dysphagia can inuence manyaspects o lie including sel-esteem and leisuretime. Maria and James made me think even

more about the importance o ood or morethan just sustenance, and the holistic approachrequired. Improvement in swallowing not only

SLTP

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