HOW I

ers in home and education settings has been challenging. It has allowed me reflect on my role as a feeding specialist in many ways. An important part of my intervention is education, which has to take account of variables such as maternal anxiety (all the carers of the pre-school children reported feeling de-skilled by having their child referred for eating and drinking difficulties) and knowledge of normal eating and drinking. Increasing knowledge of the normal processes of eating and drinking can assist development of eating and drinking for children at risk of swallowing difficulties (Siktberg and Bantz, 1999). Education support workers and carers had close daily contact with the children with whom they worked, and had established ways of feeding children. The RCSLT guidelines (2005, p.70) state, Caregivers need to be able to facilitate optimally safe efficient and pleasurable eating and drinking. Working with carers and demonstrating techniques in their environment makes any intervention realistic and of practical benefit. Health visiting colleagues were able to form part of the assessment and treatment process with their expertise of feeding management.

I am working with the health visitor who is responsible for development of education within community nursing in Angus to provide written guidelines on feeding development, and guidance about when to refer to the speech and language therapy service. These will also form part of a training package to be delivered to public health nursing staff. This training will include: a. The development of eating and drinking b. The normal process of eating and drinking c. Causes of difficulty d. Guidance on how to help e. Referral pathway. I have found that through working closely with health visitors and education support workers they have gained a level of knowledge which allows them to maintain a feeding programme when I am not present. The above training will empower nursing colleagues in offering advice for families who are experiencing feeding problems, particularly at the weaning stage. My experience of providing a community service has taught me that flexibility of approach is vital. Safe and effective practice has to adapt to as many settings as there are children referred.

Joanna Manz is a Senior Specialist Speech and Language Therapist at Abbey Health Centre, East Abbey Street, Arbroath, Angus DD11 1EN, e-mail joanna.manz@nhs.net.

References
Armstrong, L. & Pendlowski, A. (2002) Twenty miles between clients, Bulletin of the Royal College of Speech & Language Therapists May. Hotaling, D. L. (1990) Adapting the mealtime environment: setting the stage for eating, Dysphagia. 5 (2) pp. 77-83. Masel, C. & Franklin, L. (1996) Management of Eating Difficulties in Children with Failure to Thrive, Australian Communication Quarterly Spring. Morris, S.E. (1989) Development of oral-motor skills of the neurologically impaired child, receiving non-oral feeding, Dysphagia 3 (3), pp. 135-54. Royal College of Speech & Language Therapists (2005) Clinical Guidelines. Bicester: Speechmark. Siktberg, I.L. & Bantz, D.L. (1999) Management of children with swallowing disorders, Journal of Paediatric SLTP Health Care 13 (5), pp. 223-9.

HOW I (2):

Parents at the centre

ROSEMARY PARKER CHARTS THE DEVELOPMENT OF THE TORBAY COMBINED FEEDING CLINIC FROM ITS CONCEPTION 12 YEARS AGO, VIA AN AUDIT TO A RECENT PARENTAL QUESTIONNAIRE, AND OUTLINES HER HOPES FOR ITS FUTURE.

he Paediatric Combined Feeding Clinic in Torbay has evolved over the last twelve years and is the first of its kind in the South West Peninsula. It was precipitated when, in addition to my role with children with complex communication and language difficulties, I began to receive rapidly increasing referrals for babies and young children with feeding problems; the legacy of modern technology is a cohort of infants who survive in spite of being born prematurely (Kennedy, 1997). These problems ranged from highly complex to relatively mild. At one end, there was an impaired ability to protect the airways and significantly compromised fluid / solid intake which required swift, informed decisions on total or partial nonoral feeding. At the other, were children with secondary behavioural difficulties arising from more subtle oromotor limitations and / or unrecognised sensory defensiveness who required a supported management plan. I was dealing with children suffering from failure to thrive, inadequate nutrition, frequent chest infections, compromised developmental progress (with its link to long-term health problems such as cardiovascular disease / diabetes mellitus), food avoidance and the effect on family dynamics and quality of life for child and carers. Families were being offered isolated advice which led to delayed
SPEECH & LANGUAGE THERAPY IN PRACTICE Autumn 2007

treatment, and there was inefficiency from the overlap of clinical input. Disproportionate time was spent on communication between disciplines and there were multiple appointments over an extended timescale for families.

The main functions of the clinic are to: Assess the problem and offer a plan Promote early identification and treatment Support parents and professionals Provide resource to other professionals Provide a link with other feeding teams. Our objectives are to: i. Enable safe feeding and adequate nutrition ii. Offer clear, realistic and achievable advice iii. Reduce parental anxiety / stress iv. Enable mealtimes to be more sociable v. Maximise consistency of approach across environments vi. Reduce appointments for both families and professionals. Our caseload covers children with neuromuscular difficulties, specific syndromes, prematurity, acquired or progressive conditions, craniofacial abnormalities, learning disability, cardiac / respiratory related difficulties and gastro oesophageal reflux. Their presenting problems include: Impaired swallow function Impaired co-ordination of suck breathe swallow synchrony Risk of aspiration safety issues Impaired oromotor function Texture / transition difficulty Difficulty with chewing / choking / vomiting Failure to thrive Reduced endurance Non-oral to supplementary to full oral feeding (and vice versa). There are exceptions however for: 1. Children under 3 years with purely behavioural and management problems. They are seen by the small,

Practical, realistic plan

The need for a holistic approach, with parents at the centre, was clear. Also apparent was the value of coordinated multi-professional advice to produce a practical, realistic plan, tailored to each individuals requirements - and so the Paediatric Combined Feeding Clinic was born. The specialist core team is in table 1. Table 1 Specialist Core Team
Consultant Paediatrician Dietitian Speech & Language Therapist (Coordinator) Occupational Therapist

Child & family

Plus individual others such as health visitors, physiotherapists, teachers

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dedicated Nurture Team, mainly comprising health visitors, social services care workers and some clinical psychology input. When required they link with myself and / or our paediatric dietitian. 2. Children with eating disorders such as anorexia. They also have a separate team which does not require a speech and language therapist, although rarely there may be a crossover of clinical observation or videofluoroscopy where felt to be useful. 3. Children with metabolic disorders, who are not seen in the Combined Feeding Clinic unless oromotor function is also affected. 4. Children with autistic spectrum disorder, who occasionally present initially via the Combined Feeding Clinic, but are otherwise advised separately as part of multidisciplinary assessment or ongoing input. The Combined Feeding Clinic is held once a month apart from August. It acts as a central point, or hub, with spoke appointments. Spoke sessions may include a joint occupational therapy / speech and language therapy appointment for positioning and seating or looking at tactile defensiveness and oral sensitivity (so closely linked but a diversion into sensory integration issues might take up the entire magazine!), or a medical appointment regarding neurological, ENT, developmental, cardiac, genetic, dental, orthodontic and other issues. I home visit, often with a specialist community nurse or health visitor, who continue support and follow-through. The home visit sets both assessment and advice in context.

Family orientated
Not everyone who is referred needs to be seen in the Combined Feeding Clinic; they may be seen only by speech and language therapy or jointly by the dietitian / speech and language therapist. The more complex cases benefit from the Clinics holistic aspect of problem solving and melded advice with parents at the centre. We hold the Clinics in our large room in the John Parkes Unit where the setting is family orientated and more relaxed than an acute ward might be. Families and professionals may travel some distance as this is a rural area. If youve time to look at a map, youll see Torquay where the clinic is based, up the coast to Dawlish, over to Moretonhampstead and down across the Moor (Dartmoor) past Ashburton to Dartmouth. (Yes, its absolutely beautiful arent we lucky to work here!) The environment, however, doesnt change the difficulties,

anxieties or needs of families whose children have extra needs, and in Torbay itself we sometimes see microcosmic pockets of inner city. The range of difficulties can be very wide. For example, we see children with acute respiratory and / or neurological problems who cannot manage their own secretions. One child, who is now 7, was extremely premature (born at 23 weeks) and required a tracheostomy. He has gradually gone from non-oral to normal oral intake, with the tracheostomy now removed. Another child with an unusual syndrome required a gastrostomy long-term as oral feeding was unsafe. This is perhaps where a clinical psychologist might also have a role, as feeding is a basic maternal instinct and its really hard for some mothers to accept that oral feeding is unsafe. Several mothers who have had to go down this route have said they would be very happy to talk with other families where this might be the best option. Some of our children need a close input to modify aspects of feeding - positioning, oral-facial techniques, modifications of textures, utensils, nutritional supplements - resulting in safer, more nutritional and less stressful mealtimes. With review and monitoring they continue to thrive. Others, as they mature, are unable to sustain nutritional status and may require a gastrostomy plus oral feeds. At the milder end, timely advice and support reduces or eliminates the problem altogether. An argument for early intervention is that we still have some referrals of older children where aversive behaviours can be seen as secondary problems arising from their early history.

We noted that children who on initial presentation had been at risk of aspiration showed improved feeding, with a small minority only referred for gastrostomy or supplementary feeding. Generally there was improved nutritional intake, status and growth, along with improved drinking, chewing and oromotor function, facilitating normal weaning and age appropriate feeding development. We also noted increased tastes through appropriate textures, appropriate timing and feeder techniques, increased confidence for both child and carer and increased awareness of feeding issues. The non-attendance rate was very low, and was for initial appointments only.

Awareness raised
Following the 2002 audit, we achieved a paediatric videofluoroscopy service instead of families having to travel elsewhere. Also, awareness was raised and junior doctors, other allied health professionals and nursing students now attend the clinic as part of their continuing professional development. We also now have a full-time specialist paediatric dietitian. We have occasional access to a clinical psychologist but only in specific circumstances, such as where a child has a learning disability. We would welcome the addition of a clinical psychologist to our core team. A significant funding issue remains with regard to more designated speech and language therapy time. Our current service is restricted to hospital (paediatric wards and Child Development Team) cases, children on respite and a closely capped caseload of referrals from community and schools (RCSLT, 2005). We are unable at present to provide any cover for annual, study or sickness leave. (The impact of this was brought home when I was injured in the Berkshire rail crash of November 2004 while returning from a course at Great Ormond Street; it was slow motion mode for a while, but we speech and language therapists are a resilient lot!) We would like to be able to offer a much more comprehensive service, including expansion of training opportunities. The national education policy for integration means that, for example, there are a great many more children with physical disability in mainstream schools. Some of these children need individually tailored care programmes and extra mealtime support, and there is a need to raise overall awareness and understanding as well as specific training.

Objective
To get a more objective picture of the service, we audited the Combined Feeding Clinic from January to June 2002 (total clients = 65).
Outcome Discharged as improved to normal / optimal Ongoing treatment Pending discharge (treatment complete) Reviewed for changing need or transition Referred on to further medical investigation (eg. ENT / neurologist) Advised supplementary non-oral Did not attend initial appointment Advised non-oral feeds only No. 21 15 8 8 6 4 2 1

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SPEECH & LANGUAGE THERAPY IN PRACTICE Autumn 2007

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I remember one father saying to me, How difficult can it be putting a spoon in a childs mouth?, and it still amazes me that so many people, including highly educated ones, think that feeding is a bit like being a postman open the box and itll go down! But where, how and with what effect This is why, at the suggestion of our consultant paediatrician, we launched a patient satisfaction questionnaire. The questionnaires were piloted by two families initially and then sent out to 40 families. The questionnaires were divided into child and clinic categories (the full questionnaire is available in the members area of www.speechmag.com). We had a 62.5 per cent return and felt that this, like the low failure to attend rate, spoke for itself. As one respondent said, As a mother, it is such a basic task to feed your child isnt it - its something most of us take for grantedwithout the support, I feel I would have become very depressed. Tables 2 and 3 show the ages of respondents children when first seen at the clinic and at the time of completing the questionnaire. Table 4 gives a breakdown of known / unknown cause, and table 5 shows the co-existence of other difficulties.
Table 2 Age first seen at the Combined Feeding Clinic Q1. How old was child when first seen at clinic?
12 10

Interestingly, 100 per cent of respondents found the paediatric food diary (slightly adapted from McCurtin, 1997) helpful to them, as it was to the professionals. The initial team discussion and problem solving was useful to 96 per cent. More than half were keen on a parent support group and a follow-up phone-in service was 100 per cent requested. (This is available, but not as a formalised helpdesk.) On the question of hypo / hypersensitivities, a significant number of children were tactile defensive. As this needs to be tackled first before a successful oral desensitisation programme can be implemented, here is another instance of the value of inter-disciplinary working, in this case between speech and language therapists and occupational therapists. Another interesting note was from a question about siblings; in our questionnaire, 28 per cent were only children. In an audit of the Jersey Multi-disciplinary Feeding Clinic (Glaun et al., 2004), whose team also includes the equivalent of our Nurture Team, 85 per cent were only children. Is this significant, and does it relate to parental experience and confidence? The only question which was, notably, not answered

(but this could have been because it wasnt very well worded) was the one asking if anyone else in the family had had difficulty with eating. Most of our cases are medical but in the milder cases there have been mothers with eating disorders and / or postnatal depression. This is perhaps another pointer for clinical psychology input. Parents put lots of comments - not only in the box provided but all over the questionnaires! and a few are below. I hope they may one day lead to increased service provision for our families. I did feel like I was thought of as a neurotic mother but since I feel like Ive been listened to. People listen and understand / dont feel so alone / feel more confident / feel more relaxed. Felt frustrated and scared. Helped me to let go of the idea that (one person) can make everything ok. Always something new to learn / made me more aware / helped me understand. Excellent exercises given. My daughters life is much more settled now and so is mine! Thank you! Absolutely wonderful outcome. Do e-mail me if any of you have any suggestions or comments its always so good to talk! Rosemary Parker is a clinical specialist speech and language therapist with South Devon Healthcare NHS Foundation Trust at the John Parkes Childrens Unit, Torbay Hospital, Torquay TQ2 7AA, tel. 01803 655581, e-mail rosemaryparker@nhs.net.

Table 3 Age at time of questionnaire Q2.Current age of child

No. of patients

8 6 4 2 0

No. of patients

References
<1 year 1-2 years 3-4 years 5 years 6 years 11 years 12 years

<1 year

1-2 years

2-3 years

3-5 years

Table 4 Underlying conditions

26% 7% 26%

No Known med condition Premature Specific

Glaun D., Phillips, S., Fa, J., Wycherley, J. & Malpas, T. (2004) Evaluation of Outcomes at Jerseys multidisciplinary feeding clinic for children. Unpublished. Kennedy, G. (1997) in McCurtin, A. The Manual of Paediatric Feeding Practice. Bicester: Speechmark. McCurtin, A. (1997) The Manual of Paediatric Feeding Practice. Bicester: Speechmark. Royal College of Speech & Language Therapists (2005) Clinical Guidelines. Bicester: Speechmark.

Useful resources
Arvedson, J.C. & Lefton-Greif, M.A. (1998) Pediatric Videofluoroscopic Swallow Studies. The Psychological Corporation. Frick, S.M., Frick, R., Oetter, P. & Richter, E.W. (1996) Out of the Mouths of Babes: Discovering the Developmental Significance of the Mouth a Book Especially for Parents and Other Grown-ups. Hugo, MN: PDP Press. Wolf, L.S. & Glass, R.P. (1992) Feeding and Swallowing Disorders in Infancy. Therapy Skill Builders. Other material recommended by Rosemary Parker is in magazine extras at www.speechmag.com.

41%
Table 5 Other difficulties None Seizures Allergies Social Comm Speech/Lang Tonsils/Adenoids Hearing Vision Stiff/Flop/Muscle Tone

Spec diag & prem

3 5 4 2 16 4 2 7 14

Acknowledgements
I would like to say a big thank you to the wonderful people who gave their advice and support in helping me to set this clinic up. The qualitative and quantitative data from the sample supplied by audit (2002) and the patient carer survey (2007) belongs to South Devon SLTP Health Care Trust.

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SPEECH & LANGUAGE THERAPY IN PRACTICE Autumn 2007

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Rosemary Parker, who wrote Parents at the centre, part 2 of How I provide a paediatric dysphagia service, in our Autumn 07 issue compiled this list of useful resources for readers: Arverdson, J.C. & Brodsky, L. (1992) Pediatric swallowing and feeding: assessment and management. Delmar. Arvedson, J.C. & Lefton-Greif, M.A. (1998) Pediatric Videofluoroscopic Swallow Studies. The Psychological Corporation. Batchelor, J.A. (1999) Failure to thrive in young children. The Childrens Society. Bleile, K.M. (1993) The care of children with long-term tracheostomies. Singular Publishing Group. Cooke, R.J. & Embleton, N.D. (2000) Feeding issues in preterm infants, Arch Dis Child Fetal Neonatal Ed 83, pp.F215-F218. Frick, S.M., Frick, R., Oetter, P. & Richter, E.W. (1996) Out of the Mouths of Babes: Discovering the Developmental Significance of the Mouth- a Book Especially for Parents and Other Grown-ups. Hugo, MN: PDP Press. Gisel, E.G. & Alphonce, E. (1995) Classifications of eating impairments based on eating efficiency in children with cerebral palsy. Dysphagia 10 (4) pp.268-274. Glaun, D., Phillips, S., Fa, J., Wycherley, J. & Malpas, T. (2004) Evaluation of Outcomes at Jerseys multidisciplinary feeding clinic for children. Unpublished. Goldbart, J., Warner, J. & Mount, H. (1994) The development of early communication and feeding. Kennedy, G. (1997) in McCurtin, A. The Manual of Paediatric Feeding Practice. Bicester: Speechmark. McCurtin, A. (1997) The Manual of Paediatric Feeding Practice. Bicester: Speechmark. Morris, S.E. & Klein, M.D. (1987) Pre-feeding Skills: A Comprehensive Resource for Mealtime Development. The Psychological Corporation. Oetter, P., Richter, E. & Frick, S. (1995) MORE: Integrating the mouth with sensory and postural functions. PDP Press. Reilly, S. & Skuse, D. (1992) Characteristics and management of feeding problems of young children with cerebral palsy, Developmental Medicine & Child Neurology 34, pp.379-388. Royal College of Speech & Language Therapists (2005) Clinical Guidelines. Bicester: Speechmark. Schwarz, S.M., Corredor, J., Fisher-Medina, J., Cohen, J. & Rabinowitz, S. (2001) Diagnosis and treatment of feeding disorders in children with developmental disabilities, Pediatrics 108 (3), pp.671-676. Soby, J.E. (1994) Prenatal exposure to drugs/alcohol: Characteristics and educational implications of fetal alcohol syndrome and cocaine/polydrug effects. Springfield, IL: Charles C. Thomas. Sullivan, P.B., Lambert, B., Ford-Adams, M., Griffiths, P. & Johnson, A. (2000) Prevalence and severity of feeding and nutritional problems in children with neurological impairment: Oxford Feeding Study, Developmental Medicine & Child Neurology 42, pp.674-680. Sullivan, P.B., Juszczak, E., Lambert, B.R., Rose, M., Ford-Adams, M.E. & Johnson, A. (2002) Impact of feeding problems on nutritional intake and growth: Oxford Feeding Study II, Developmental Medicine & Child Neurology 44, pp.461-467. Trott, M.C., Laurel, M.K. & Windeck, S.L. (1993) Understanding Sensory Integration. Therapy Skill Builders.

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Watt, S. (2003) The safe administration of medicines to children: Part II. Paediatric Nursing, 15 (5), pp40-44. Watt, S. (2003) The safe administration of medicines to children: Part I. Paediatric Nursing, 15 (4), pp. 40-43. Winstock, A. (1994) The Practical Management of Eating and Drinking Difficulties in Children. Speechmark. Wolf, L.S. & Glass, R.P. (1992) Feeding and Swallowing Disorders in Infancy. Therapy Skill Builders. A wide range of specific syndrome trusts / societies, eg: Contact-a-Family Directory (www.cafamily.org.uk/dirworks.html) The Jennifer Trust for Spinal Muscular Atrophy (www.jtsma.org.uk/) National Autistic Society (www.nas.org.uk/) Speech and language therapy departments which have a variety of useful material include: Great Ormond Street (eg. Prof. Lewis Spitzs information on Gastrooesophageal reflux and Nissen fundoplication) Birmingham Childrens Hospital Yorkhill, Glasgow Hammersmiths University Hospital of Wales (Bev Curtiss leaflet, Moving on from tube feeding: how parents can help) Also Journal of Paediatric Gastroenterology and Nutrition, 37 (1) Rosemary says this Lippincott, Williams and Wilkins publication is useful re aversive behaviours arising as secondary to original primary problem which may no longer be immediately evident.

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PAEDIATRIC COMBINED FEEDING CLINIC

Your information, comments and ideas will be immensely valuable to us in helping us to understand ways in which we could improve this service. The information you provide will remain strictly confidential and will in no way affect any current or future treatment. Thank you very much for your time and involvement. Your Child 1. How old was your child when they were first seen for advice or feeding? 2-3 years

Less than 1 year Between 1-2 years 3-5 years 2. 3.

Over 5 years

Your childs age now? . Does he/she still require ongoing advice and support for feeding? Yes No If yes, is it provided and by whom?

.. 4. How is he/she fed? Orally only Nasogastric tube 5. Partially Oral

Gastrostomy

What was your main concern at the time of your first CFC appointment?

. . 6. Is this still your main concern? Yes No

If no, what is your current concern? . .

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P.T.O.

7.

Did he/she have difficulties with one or more of these? Other/Comments

Difficulty from birth Difficulty with fluids (drinking) Difficulty with lumps Difficulty with biting off/chewing Difficulty with swallowing Difficulty with variety/range Difficulty with gagging/retching Difficulty with coughing/choking Difficulty with vomiting Difficulty with length of mealtime Difficulty with self-feeding 8.

Which of these applies to your child? :

Prematurity (If so, how many weeks early)? No known medical condition If specific diagnosis, please say (if you would like to)

..........................................................................................................................
9. Does your child have any difficulty in any of the following areas? : Speech and language Social communication Allergies

Stiffness/floppiness Muscle tone Vision Hearing Tonsils/adenoids 10.

Seizures/fitting

Is your child especially sensitive/insensitive with any of the following? : Normal reaction Normal reaction Normal reaction Normal reaction Heightened/little reaction Heightened/little reaction Heightened/little reaction Heightened/little reaction Heightened reaction/little Heightened reaction/little Heightened reaction/little Heightened/little reaction Heightened/little reaction

Sounds and noises Smell and taste Temperature Lights Touch (e.g. people: holding hand) Touch (textures: wet,soft,sand, etc) Pain Washing hair/ Brushing teeth Other

Normal reaction Normal reaction Normal reaction Normal reaction Normal reaction

Please delete as appropriate

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11.

Does he/she enjoy the company of :

Adults? Other Children? 12.

Prefers own company Brother(s)? Sister(s)? Only child?

Does he/she have

13.

Did anyone else in the family have difficulties with eating? Can you say who? .

Brother/Sister Father Mother Other 14.

Do you have the opportunity to sit round a table together to eat? Yes No If yes, how many times a week? ........

The Clinic This involves a team of specialist Speech and Language Therapist, Dietitian, and Paediatrician. Your Health Visitor, Portage Worker or Teacher or others may have been present. Our aim is to provide support to parents and carers in managing feeding difficulties. To assess the problem and offer a plan of action with linked advice, which is realistic and achievable. To cut down the number of separate appointments for families. To work with parents, to enable feeding to be both safe and nutritionally adequate. 15. Did you feel you had to wait a long time for your first appointment? Yes No

If yes, how long did you wait? ............................................. 16. Were you given a food diary? Yes Yes No No

If yes, did you find this useful to you? 17.

Did the Speech and Language Therapist observe your child eating? Yes No Yes Yes No No

If yes, by direct observation? By looking at a video?

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P.T.O. 18. a) When you saw the team, did you feel : That they listened? Yes Gave enough time? Yes Understood your concern? Yes Were you given written advice? Yes No No No No No

b)

Did you find the discussion helpful? Yes

If no, please tell us what would be more helpful . 19. Would you like to see a parent group set up for support? Yes No

(If no, can you say why?) ..............................................................................

20.

Would you like to have a parent contact rather than a group? Yes No

21.

Would you be interested in acting as a parent support to another parent? Yes No

22.

Who followed through the advice with you? (apart from the team) Portage Health Visitor Nursery team School Keyworker Other (please state)

23.

How did you feel after the Combined Feeding Clinic? Motivated Reassured/supported Upset/angry (If so, please try to tell us why)

...................................................................................................................... Other feelings 24. Do you feel that seeing the team has made a difference in any way(s) to your childs feeding and/or its effect on the family? Yes No

Any particular points? ................................................................................... 25. Would you prefer : To be able to ring if you want follow up advice? or To have regular calls from one of the professions?

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Suggestions/Comments:

Please return this to us in the envelope provided to: Rosemary Parker Clinical Specialist Speech and Language Therapist John Parkes Unit Torbay Hospital Annexe Torquay TQ2 7AA

Thank you very much for your time.