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From reaction to action

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If referrals for feeding and drinking difficulties in adults with profound and complex needs are made too late or in too great a number for the speech and language therapy service to respond immediately, the problem becomes one of dysphagia and is much more difficult to manage. Sue Dobson and colleagues describe their move to a preventative approach.

he work of speech and language therapists with people with dysphagia is the most reactive of any of the other specialisms. It exists as one of the few speech and language therapy emergencies. Royal College of Speech & Language Therapists guidelines suggest a 48 hour response time. The person referred - usually following a stroke or other neurological event - is likely to be unknown to the service, with no relevant previous records. In services for adults with learning disabilities the situation is different. People are likely to have feeding and drinking difficulties rather than dysphagia and the services response times are therefore usually within two weeks of referral. The people referred are often known to the speech and language therapy service. They will possibly have received episodes of intervention to support their social skills or establish alternative and augmentative system communication. The management of the problem is different too, in that there are considerable numbers of people who have to be fed and are unable to manage their own nutrition. The speech and language therapists covering this specialism also receive urgent referrals when adults with learning disabilities have an eating and/or drinking crisis. The person has probably always been known to be difficult to support while being given food or drink, but staff are used to the eating and drinking problems they and the service user experience at mealtimes and see nothing unusual in the difficulties. staff get used to the person coughing during and after meals and do not recognise it as cue for referral. the loss of skills the person exhibits is so slow that the staff are not immediately alerted to the difficulty. many people with particular syndromes are living longer and there is little knowledge within the

services of which conditions are likely to present with deteriorating swallowing skills. people with cerebral palsy who have attended Further Education college may have had well managed feeding programmes, and their difficulties as they settle into adult day services are seen as one of transition, rather than the onset of progressive feeding difficulties after the age of 25 years. high staff turnover in residential and daycare services means that continuity of staff training about feeding is difficult to maintain. The referrals received are then often too late to offer successful environmental management of the swallowing difficulty. The problem has become one of dysphagia and the person is either too ill to respond to environmental management procedures, has already been admitted to hospital, or the problem is about to be managed by non-oral feeding methods. Our locality identified these difficulties four years ago and responded by i. setting up a multidisciplinary feeding clinic ii. identifying everyone in the district who needs to be fed by staff iii. auditing the feeding standards in all day services iv. ensuring that everyone who is fed has feeding guidelines in place v. getting the level of risk of everyone who is fed recorded and monitored vi. establishing a rolling programme of on-site unit training vii. introducing joint speech and language therapy, dietetic and physiotherapy assessments within the units viii making video recording and pulse oximetry standard procedures in every assessment ix. standardising recording of assessments x. cooperating with a Downs Syndrome and Dementia screening programme for those people over the age of 35 years xi. instituting links with hospital radiology services. However, despite these procedures being maintained and monitored, it became clear that too many emergency referrals were still being received at certain times of the year. These referrals needing an urgent response were not spaced but tended to come in clusters. As the number of speech and language therapists employed is limited, and only certain of them may have the expertise to assess swallowing within such a learning disability service, this became a management issue. There are now more people aged over 50 years in adult learning disability services. However, these requests for an urgent response were not particularly associated with the onset of dysphagia in dementia, cerebrovascular accident or other neurological disorders such as those associated with increased ageing, although there were occasional ones.

A proactive approach
The speech and language therapists, physiotherapists, occupational therapists and dietitian form the basis of the feeding clinic staffing, complemented



Table 1 Sixteen risk factors of those referred

by other clinical teams within the locality. A health centre within the same learning disabilities directorate provides specialist clinics and each special care day service is staffed by one of the health surveillance nurses team. The feeding team therefore negotiated a joint audit with these two other teams to try and develop a proactive approach for people with swallowing difficulties. The aim was to identify the most common contributory factors in the problems of people who are fed. The teams chose to focus on the largest special care unit where, out of the 45 people attending on a weekly basis, 32 are fed. People who are fed are known to be at a higher risk of swallowing difficulties than people who can feed themselves; indeed, being fed is in itself a risk factor. A questionnaire was jointly designed with the participants to include any factors which might impact on health issues which result from feeding difficulties, for example lack of lateral jaw movement during chewing and resultant problems with impacted earwax, or the link between dental caries and bacteria associated with aspiration pneumonia. Completed questionnaires from the dentist, audiologist, orthoptist and health surveillance nurse were collated with those produced by the physiotherapists, occupational therapists and a dietitian. The speech and language therapists then undertook detailed observations of each individual over a lunch-time period. These observations were then compared with the records of those people who had been referred to the feeding team over the last year. The results were then subjected to a statistical analysis using principal component analysis.

A questionnaire was jointly designed with the participants to include any factors which might impact on health issues which result from feeding difficulties

Do we understand the natural history of syndromes and diseases and interpret symptoms accordingly? Do we plan services where we can to avoid crisis management? Do we work with other teams to share workload sensibly?
7. low resting oxygen saturation levels 8. sitting positions 9. fatigue during meals 10.being underweight 11.very occasional choking. The statistical analysis of the initially identified 24 factors, showed that the two highest ranking clusters of factors (when excluding crisis factors of fever or chest infection) were as follows: a) First order factors which accounted for 18.5 per cent of the total: change in texture management weak cough food refusal coughing during meals b) Second order factors accounting for 14.1 per cent of the remaining ones: constipation oral infections. It was considered interesting that several of these factors could be linked to inadequate or inefficient liquid intake. This is often the reason for recommending thickening drinks for service users with learning disabilities rather than any identified dysphagia or acquired neurological disorder. We therefore proposed that regular three monthly monitoring of any service user who had three or more of the 11 key factors for people who are fed should be undertaken by the speech and language therapist in the unit participating in the original audit and two other units feeding people with complex needs. The health surveillance nurses agreed to monitor change in other service users who have one or two of any of the key factors. Any increase in the number of risk factors by either method of data collection would trigger a full feeding and drinking assessment by the clinical team.


New questions
This audit has led to us changing our approach and clinical focus, which raises several new questions we need to explore. For example, we need to try to determine the interaction of the other general factors identified in relation to the identified first and second order factors; speech and language therapists do not usually focus on bowel function and oral infections as clinical indicators. We will also have to evaluate the effectiveness of this type of proactive monitoring. The difference in feeding and drinking referrals received by the team will have to be monitored and compared with those over the previous 12 months. This work will also need to compare the variation in terms of frequency, urgency of the referral and outcome of the recommendations implemented. Susan Dobson is Specialist Speech and Language Therapist with the Clinical Liaison Team for Bradford District Care Trust.

Key factors

The initial analysis of the data led to the identification of 24 commonly reported factors. However, those service users who displayed more of these factors only shared 16 of them (see table 1) and they were considered to be key clinical factors in terms of risk to people who are fed. The six key factors which occurred most frequently were: 1. guidelines recommend altered food texture and/or thickness 2. guidelines recommend thickened drinks 3. a marked slow rate of eating (more than 20 minutes) 4. frequent or excessive coughing during meals 5. distress during or after meals 6. episodes of food or drink refusal for more that 2-3 days. There was a further set of five factors which particularly focused on more general physical issues which were of interest - but their significance in terms of triggering eating and drinking referrals were not clear. These were:

we need to try to determine the interaction of the other general factors identified in relation to the identified first and second order factors; speech and language therapists do not usually focus on bowel function and oral infections as clinical indicators.

Recommended reading
Dumble, M. & Tuson, W. (1998) Identifying eating and drinking difficulties. Speech & Language Therapy in Practice Winter, 4-6. Hickman, J. (1997) ALD and dysphagia: issues and practice. Speech & Language Therapy in Practice Autumn, 8-11. Rawlin, C.A., Coupland, J. & Trueman, I.W. (2001) Effective mouth care for seriously ill patients. Professional Nurse 16 (4) 1025-1027. RCSLT (1998) Clinical Guidelines by Consensus for Speech and Language Therapists. Royal College of Speech & Language Therapists. RCSLT (1996) Communicating Quality 2. Royal College of Speech & Language Therapists. Tamura, F., Shishikura, J., Makai, Y. & Kaneko, Y. (1999) Arterial oxygen saturation in severely disabled people: effect of oral feeding in sitting position. Dysphagia 14, 204 -211.


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