why do people with diabetes contact diabetes uk for dietary advice?
TRANSCRIPT
IntroductionBecause requests for dietary infor-mation constitute the largest singlecategory of enquiries to Careline atDiabetes UK, we analysed a sampleof dietary enquiries to determinethe type of information requested.
MethodsCareline staff provided 100 consecu-tive, anonymised e-mails in whichdietary information was requested.In a separate survey, 21 consecutivecallers who telephoned Careline fordietary advice were asked who hadgiven them dietary informationprior to their contact with Careline.
ResultsOf the 100 e-mail enquiries, twowere from nurses, two from dieti-tians, three from commercial organ-isations and two were unclassifiable.Of the 91 enquiries from patients orrelatives, 29 stated that they werenewly diagnosed and 14 that theywere not. Of the 34 e-mails whichincluded information on the type ofdiabetes 27 (79%) had type 2, six(18%) had type 1 and one (3%)had gestational diabetes. Thenature of the enquiries is shown inTable 1. Requests for generaldietetic information, most com-monly a request for a ‘diet sheet’,accounted for 49% of all enquiries.Those who stated that they werenewly diagnosed were more likely tobe requesting general information(23/29 versus 22/62, Chi2 15.4,p<0.001), whereas those who didnot state that they were newly diag-nosed were more likely to have specific enquiries. The fourenquiries for a recipe for low carbo-hydrate bread stemmed from a
letter in Balance. Requests for infor-mation about fruit were for adviceon which fruits were most or leastsuitable (two), how much driedfruit was safe to eat, and the sugarcontent of fresh juice in cartons.Three enquiries were to ask if codliver oil could worsen glycaemiccontrol. The seven questions cate-gorised as ‘miscellaneous’ con-cerned information about DAFNE(one), cholesterol-lowering (one),whether food intolerances weremore common in people with dia-betes (one), problems with a highfibre diet in an ileostomy patient(one), the effect of buttermilk ondiabetes (one), the use of carnitinesupplements (one), and a requestfor a new copy of Countdown (abook previously produced by theBritish Diabetic Association, but out of print for many years, whichgave the carbohydrate content ofcommonly available foods and food products).
Of the newly diagnosed patientsrequesting general advice at leastseven (30%) stated that they were
totally confused or uncertain aboutwhat they could or could not eat.Several also complained about poorquality or conflicting advice; forexample: ‘I have just been diag-nosed and am getting conflictingadvice. I have had no dietary advicefrom the GP apart from “lose weightand come back in three weeks”. Thenurse gave me a leaflet which doesnot help much and told me not totake sugar. I have been told not toeat carrots and parsnips becausethey contain sugar. Is this correct?’
Another patient wrote that: ‘Thenurse at my diabetic clinic says I caneat Muller light yoghurts, but thedietitian at the hospital said, “No!There is too much sugar in them.” Iasked the local nurse again whosaid, “Rubbish! I recommend themto all my diabetics.” Please tell mewho is right.’
At least one patient with recentlydiagnosed type 2 diabetes feltunable to contact his local healthprofessionals before the nextplanned appointment: ‘The lowestreading I have had is 10.3 and last
Pract Diab Int September 2004 Vol. 21 No. 7 Copyright © 2004 John Wiley & Sons, Ltd. 253
Why do people with diabetes contactDiabetes UK for dietary advice?H Connor*, E Bunn, N McGough
ORIGINAL ARTICLE
ABSTRACTA survey of 91 e-mail enquiries to Diabetes UK showed evidence of a substantial un-met need for better quality dietary advice, both at the time of diagnosis and duringfollow up. There was evidence of inadequate and inappropriate advice and of conflictingadvice from different health care professionals. Many of those who were newlydiagnosed were confused about what they should and should not eat.
Doctors and nurses who give dietary advice need better training in currentnutritional principles. People with type 1 diabetes should be seen by a state registereddietitian within two days of diagnosis and those with type 2 diabetes within one month.All patients should be offered an annual dietetic review with a state registered dietitianand there should be provision for those who need more frequent review. Copyright ©2004 John Wiley & Sons, Ltd.
Practical Diabetes Int 2004; 21(7): 253–255
KEY WORDSdiabetes mellitus; diet; nutrition
Henry Connor, MD, FRCP, ConsultantPhysician, County Hospital, HerefordEmma Bunn, BSc, SRD, Care Advisor, Diabetes UKNorma McGough, BSc, SRD, Freelance
Dietitian, Former Head of NutritionServices, Diabetes UK
*Correspondence to: Dr Henry Connor,Consultant Physician, County Hospital,
Union Walk, Hereford HR1 2ER; e-mail:[email protected]
Received: 22 December 2003Accepted in revised form: 25 May 2004
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week my readings were between 14and 18.8. I do not go back to see theDiabetic Nurse until 15 April afterseeing her originally on 11 Februaryand all I was told was to keep a low sugar diet and eat sensibly. Is it usual to be referred to a dietitianor not?’
Of 21 telephone callers toCareline, six said they had been givenno dietary advice at all, two had beengiven a diet sheet, five had receivedadvice from a doctor and two from anurse, two had been given theCareline phone number and told toget advice from them, and only four(19%) had either seen a dietitian(two) or were waiting for an appoint-ment with a dietitian (two).
DiscussionThose people with diabetes whocontact Diabetes UK for dietaryadvice may not be representative ofthe total diabetic population, buttheir enquiries do provide evidenceof a substantial un-met need fordietetic advice. Careline receivesabout 5000 dietetic enquiries annu-ally and, from the findings in thissurvey, some 4000 of these are frompeople with type 2 diabetes, many ofwhom are newly diagnosed andsome of whom have received nodietary advice or advice which iseither inadequate or incorrect, orwhich conflicts with that given byanother health professional.
These findings corroboratethose of the Listening Project, a sur-vey conducted by Diabetes UK in2001 of the needs of people newlydiagnosed with diabetes and whichwas based on responses in 2269questionnaires, 182 participants in31 focus groups and 46 structuredinterviews.1 Those people who men-tioned support and practical advicefrom health care professionals, as auseful part of the service provided,listed that given by dietitians moreoften than that from other healthprofessionals. Where practical sup-port was highlighted as one of thethree most useful things which wereneeded but not provided, informa-tion about diet (66%) featuredmore prominently than any otherneed (advice on blood testing 13%,on medication 7% and other advice13%). As in the present study of
e-mail enquiries to Careline, theListening Project found evidence ofconflicting dietary advice fromhealth professionals and of delays inappointments with dietitians.1
The Listening Project focussedspecifically on the needs of thenewly diagnosed, but the presentstudy also shows that there is an un-met need for on-going dietaryadvice in the years after diagnosis.Many people with diabetes havenever had a consultation with adietitian. In a study fromSunderland, only 59% of patientshad seen a dietitian in the previouseight years, and many patients with impaired renal function orwith dyslipidaemia had never seen adietitian.2 Similarly, in a question-naire survey of people with diabetesin Herefordshire, only 75% couldrecall ever having seen a dietitian
and, of these, 44% had seen a dietitian only once and a further18% saw a dietitian only ‘rarely orirregularly’.3
This evidence of a considerableun-met need, as perceived by peoplewith diabetes, is unsatisfactory inwhat should be a patient-centred service, and particularly so becausethere is evidence, which has beenreviewed in two recent publica-tions,2,4 that contact with a profes-sional dietitian is clinically effectiveand also cost effective. In contrast,there is no published evidence forthe effectiveness of dietary advicegiven to people with diabetes byother health professionals, althoughin a randomised trial of the dietarymanagement of hypercholestero-laemia (in which the dietary advice isvery similar to that required by mostpeople with type 2 diabetes), coun-
254 Pract Diab Int September 2004 Vol. 21 No. 7 Copyright © 2004 John Wiley & Sons, Ltd.
ORIGINAL ARTICLE
Why do people with diabetes contact Diabetes UK for dietary advice?
Table 1. Nature of the enquiries from patients or relatives
Enquiry Newly Not newly Not stated Totaldiagnosed diagnosedn=29 n=14 n=48 n=91
n (%) n (%) n (%) n (%)
General dietetic 23 (79) 8 (57) 14 (29) 45 (49)advice
Non-nutritive 1 (3) 1 (7) 5 (10) 7 (8)sweeteners
Atkins diet 1 (3) 5 (10) 6 (7)
Diabetic foods 2 (7) 2 (4) 4 (4)
Low 4 (8) 4 (4)carbohydratebread recipe
Fruit/fruit juice 4 (8) 4 (4)
Coeliac disease 1 (3) 2 (14) 3 (3)and diabetes
Glycaemic index 3 (6) 3 (3)
Glucosamine 3 (6) 3 (3)– sugar content
Cod liver oil 1 (7) 2 (4) 3 (3)
Alcohol 2 (4) 2 (2)
Miscellaneous 1 (3) 2 (14) 4 (8) 7 (8)
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CONFERENCE NOTICE
23rd Annual Isle of Wight Diabetes ConferenceInnovative diabetes care and educational models29–30 October 2004, Ocean View Hotel, Shanklin, Isle of WightFor more information and to register for the conference please contact the organising Chairman Dr Ma’en Al-Mrayat, Consultant inDiabetes and Endocrinology, St Mary’s Hospital, Isle of Wight. Tel: 01983 534 406; e-mail: [email protected]
New format this year
selling by dietitians achieved greaterreductions in LDL cholesterol thandid that given by doctors.5
The Listening Project concludedthat there is a need for diagnosis-specific, culturally sensitive informa-tion on food choices and adapta-tions to be provided at the point ofdiagnosis and that recently diag-nosed people with diabetes shouldmeet with a state registered dietitianas soon as possible after diagnosis.1
There is also a need for regulardietetic review in the years afterdiagnosis. In 1994 the Departmentof Health’s Clinical StandardsAdvisory Group (CSAG) recom-mended that all newly diagnosedpeople with diabetes should beoffered an appointment with adietitian within one month of diag-nosis and that non-crisis dieteticreview should be available annuallyto everyone with diabetes with provision for more frequent reviewin certain groups, e.g. pregnancy,renal impairment, dyslipidaemia.6
However, a postal survey in 1997 ofdietitians known to be involved inthe provision of diabetes care foundthat only 69% of dietitians couldmeet the first CSAG standard andless than half could meet the sec-ond.7 The same survey found wideregional variations in the provisionof dietetic care for diabetes in theUK (median 10.7, range 2.0–27.6hours per 100 000 of the generalpopulation per week), with 85% ofrespondents working in areas wherethe provision was less than the cur-rent recommended minimum of22 hours per 100 000 populationper week7 – a standard which nowneeds to be increased to provide forimplementation of the DAFNEstudy8 and the requirements formore structured education pro-grammes and increased training ofhealth care professionals in theNational Service Framework.9,10
To remedy the considerable un-met need in the provision of adequate and appropriate nutri-tional advice for people with dia-betes, their relatives and carers, atthe time of diagnosis and in subse-quent years, we suggest adoption ofthe standards proposed by theCSAG,6 as described above, with theaddition that newly diagnosedpatients with type 1 diabetes shouldnormally be seen by a state regis-tered dietitian within two days ofstarting treatment with insulin. Thislevel of service provision has impli-cations for dietitian time and num-bers.7 We also suggest that thosewho fund diabetic care shouldrequire that each provider serviceincludes at least one health careprofessional who is trained to givebasic, up-to-date, dietary informa-tion to people with type 2 diabetesat the time of diagnosis, pending an appointment with a state regis-tered dietitian.
AcknowledgementsWe are grateful to the Director ofCare and the Careline staff ofDiabetes UK for providinginformation about dietaryenquiries.
References1. Care Interventions Team. Needs of
the Recently Diagnosed – ListeningProject 2001 – Report andRecommendations. http://www.diabetes.org.uk [Accessed 27 June2003].
2. Robson T, Blackwell D, Waine C, et al.Factors affecting the use of dieteticservices by patients with diabetesmellitus. Diabetic Med 2001; 18:295–300.
3. McPherson E. Report on the results of apatient survey into Diabetes Mellitus Care in Herefordshire. HerefordshireCommunity Health Council, 2001;96pp.
4. Connor H, Annan F, Bunn E, et al.The Implementation of NutritionalAdvice for People with Diabetes.Diabetic Med 2003; 20: 786–807.
5. Henkin Y, Shai I, Zuk R, et al. Dietarytreatment of hypercholesterolaemia:do dietitians do it better? A ran-domised controlled trial. Am J Med2000; 109: 549–555.
6. Clinical Standards Advisory Group.Standards of clinical care for peoplewith diabetes. In Report of a CSAGCommittee and the Government response.London: Her Majesty’s StationeryOffice, 1994.
7. Nelson M, Lean MEJ, Connor H, etal. Survey of dietetic provision forpatients with diabetes. Diabetic Med2000; 17: 565–571.
8. DAFNE Study Group. Training inflexible, intensive insulin manage-ment to enable dietary freedom inpeople with type 1 diabetes: doseadjustment for normal eating(DAFNE) randomised controlledtrial. BMJ 2002; 325: 746–749.
9. Department of Health. NationalService Framework for Diabetes:Standards. London: Department ofHealth, 2001.
10.Department of Health. NationalService Framework for Diabetes: DeliveryStrategy. London: Department ofHealth, 2003.
Pract Diab Int September 2004 Vol. 21 No. 7 Copyright © 2004 John Wiley & Sons, Ltd. 255
ORIGINAL ARTICLE
Why do people with diabetes contact Diabetes UK for dietary advice?
Key points
• A survey of e-mail enquiries to the Diabetes UK Careline has shownevidence of substantial un-met need for dietary advice, both at diagnosisand during follow up
• There was evidence of inadequate and inappropriate advice, and ofconflicting advice from different health care professionals
• Purchasers and providers of diabetes services must do more to ensurethe provision of high quality and timely dietetic advice
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