Planning to care and caring to plan : The 2008 Mary MacKinnon Lecture
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Introduction I have the pleasure of being drawn into the world of diabetes by Mary MacKinnon. She has the knack of volunteering people for projects that they become proud to be associated with. And thus it was with me. Mary was a Practice Nurse who understood the challenges around providing diabetes care in general practice well before chronic disease management clinics, GP con- tracts and Quality and Outcomes Framework points. Not content with accepting the situation, she wrote a highly practical book for others, such as me, to follow. Her book, ‘Providing Diabetes Care in General Practice’ 1 became so popular she updated and reprinted it four times between 1993 and 2002. To illustrate Mary’s ability to enlist others in her projects I took over authorship of that book in 2007 – at her request. She further rose to the challenge by channelling her activities into educating others through her role as Director of Education for Warwick Diabetes Care, still considered by many to be the gold standard in diabetes education. She was also Vice-President of the International Diabetes Federation from 1994–1997 and an officer of the IDF Diabetes Education Consultative Section 1994–2000. Mary is now the ener- getic Chairperson of Professionals United by Diabetes (PROUD) and it is to her credit that she has never lost her capacity to care. I am honoured to have been invited to present the Mary MacKinnon Lecture in 2008 and aspire to continue to embrace the high principles set by Mary in caring for people with diabetes. Planning to care Although a plethora of information is available on care planning, my opinion is that more is written than practised and that, ultimately, it is the person with diabetes who benefits from planned care. I am glad to have Oscar Wilde confirm that my opinion has great value (Box 1). In the 1990s, diabetes mini-clinics became popular in general practice through chronic disease management funding. Some were nurse led, others a true team event. I felt we were pro- gressing. Weren’t we measuring key areas and setting targets to achieve? Remember, this was a relatively new concept then with the majority of people with diabetes attending hospi- tal outpatient clinics. We provided education and leaflets to back up the seriousness of our message because it seemed a good way to educate people about their disease. The Audit Commission Report 2 of 2000, based mostly on hospital clinics, belied our efforts and brought home what people with dia- betes really thought. ‘The long round of weight, BP, urine and blood tests changes nothing. I feel like a number, not a person.’ ‘I have no idea whatsoever why I do daily blood checks ... I have not the remotest idea what I am keeping the record for.’ It’s not just the patients who are confused. Researchers 3 found that a particular problem in long-term con- ditions, such as diabetes, is that the purpose of the consultation is not always clear – either to the person with diabetes or to their doctor. So, have things changed all that much? We clearly need a better system. We must look with rather than at someone with diabetes. ‘Our health, our care, our say’ ‘By 2008 we would expect everyone with both long-term health and social care needs to have an integrated care plan if they want one. By 2010 we would expect everyone with a long-term condition to be offered a care plan.’ The ‘Our health, our care, our say’ 4 White Paper set out a vision to provide people with good quality social care and NHS services within the communities where they live. It is part of a 10-year plan to become more responsive to patient needs. It also contains a commitment to intro- duce information prescriptions by 2008 for those with a long-term con- dition, pointing people to relevant websites, telephone numbers and support groups specific to their con- dition. Work is going on in this area but I’m not sure it has filtered down to many of us in clinical practice yet. The (NHS) Plan Uncertainty exists around the terms ‘care planning’ and ‘care plan’. Care Planning is a process which offers people active involvement in decid- ing, agreeing and owning how their diabetes will be managed. 5 It is a part- nership approach: the person with diabetes and family members working with health professionals to decide on future management structure. It should not be confused with a patient- held record or care plan (Box 2). 6 The care plan is the means by which S TATE OF THE ART L ECTURE Pract Diab Int July/August 2008 Vol. 25 No. 6 Copyright © 2008 John Wiley & Sons 241 Planning to care and caring to plan The 2008 Mary MacKinnon Lecture G Hall* Gwen Hall, Diabetes Specialist Nurse/ Clinical Educator in Primary Care, Haslemere Hospital, Haslemere, UK; Vice Chairman, Primary Care Diabetes Society; Associate Editor, Diabetes & Primary Care *Correspondence to: Gwen Hall, Haslemere Hospital, Church Lane, Haslemere GU27 2BJ, UK; e-mail: [email protected] Received: 27 May 2008 Accepted: 28 May 2008 Box 1 ‘... an unbiased opinion is always absolutely valueless’ Oscar Wilde. ‘The Critic as Artist’, 1890
Transcript of Planning to care and caring to plan : The 2008 Mary MacKinnon Lecture
IntroductionI have the pleasure of being drawninto the world of diabetes by MaryMacKinnon. She has the knack of volunteering people for projects thatthey become proud to be associatedwith. And thus it was with me.
Mary was a Practice Nurse whounderstood the challenges aroundproviding diabetes care in generalpractice well before chronic disease management clinics, GP con-tracts and Quality and OutcomesFramework points. Not content withaccepting the situation, she wrote ahighly practical book for others,such as me, to follow. Her book,‘Providing Diabetes Care in GeneralPractice’1 became so popular sheupdated and reprinted it four timesbetween 1993 and 2002. To illustrateMary’s ability to enlist others in herprojects I took over authorship ofthat book in 2007 – at her request.
She further rose to the challengeby channelling her activities into educating others through her role asDirector of Education for WarwickDiabetes Care, still considered bymany to be the gold standard in diabetes education. She was alsoVice-President of the InternationalDiabetes Federation from 1994–1997and an officer of the IDF DiabetesEducation Consultative Section1994–2000. Mary is now the ener-getic Chairperson of ProfessionalsUnited by Diabetes (PROUD) and itis to her credit that she has never losther capacity to care.
I am honoured to have beeninvited to present the MaryMacKinnon Lecture in 2008 andaspire to continue to embrace thehigh principles set by Mary in caringfor people with diabetes.
Planning to careAlthough a plethora of informationis available on care planning, myopinion is that more is written thanpractised and that, ultimately, it is theperson with diabetes who benefitsfrom planned care. I am glad to haveOscar Wilde confirm that my opinionhas great value (Box 1).
In the 1990s, diabetes mini-clinicsbecame popular in general practicethrough chronic disease managementfunding. Some were nurse led, othersa true team event. I felt we were pro-gressing. Weren’t we measuring keyareas and setting targets to achieve?Remember, this was a relatively newconcept then with the majority of people with diabetes attending hospi-tal outpatient clinics. We providededucation and leaflets to back up theseriousness of our message because itseemed a good way to educate peopleabout their disease.
The Audit Commission Report2
of 2000, based mostly on hospitalclinics, belied our efforts andbrought home what people with dia-betes really thought.
‘The long round of weight, BP, urineand blood tests changes nothing. I feel likea number, not a person.’
‘I have no idea whatsoever why I dodaily blood checks ... I have not the remotestidea what I am keeping the record for.’
It’s not just the patients who areconfused. Researchers3 found that aparticular problem in long-term con-ditions, such as diabetes, is that thepurpose of the consultation is notalways clear – either to the personwith diabetes or to their doctor.
So, have things changed all thatmuch? We clearly need a better system. We must look with rather thanat someone with diabetes.
‘Our health, our care, our say’‘By 2008 we would expect everyone withboth long-term health and social careneeds to have an integrated care plan ifthey want one. By 2010 we would expecteveryone with a long-term condition to beoffered a care plan.’
The ‘Our health, our care, oursay’4 White Paper set out a vision toprovide people with good qualitysocial care and NHS services withinthe communities where they live. It ispart of a 10-year plan to becomemore responsive to patient needs. Italso contains a commitment to intro-duce information prescriptions by2008 for those with a long-term con-dition, pointing people to relevantwebsites, telephone numbers andsupport groups specific to their con-dition. Work is going on in this areabut I’m not sure it has filtered downto many of us in clinical practice yet.
The (NHS) PlanUncertainty exists around the terms‘care planning’ and ‘care plan’. CarePlanning is a process which offers people active involvement in decid-ing, agreeing and owning how theirdiabetes will be managed.5 It is a part-nership approach: the person withdiabetes and family members workingwith health professionals to decide onfuture management structure. Itshould not be confused with a patient-held record or care plan (Box 2).6The care plan is the means by which
STATE OF THE ART LECTURE
Pract Diab Int July/August 2008 Vol. 25 No. 6 Copyright © 2008 John Wiley & Sons 241
Planning to care and caring to planThe 2008 Mary MacKinnon Lecture
G Hall*
Gwen Hall, Diabetes Specialist Nurse/Clinical Educator in Primary Care,Haslemere Hospital, Haslemere, UK; ViceChairman, Primary Care Diabetes Society;Associate Editor, Diabetes & Primary Care
*Correspondence to: Gwen Hall,Haslemere Hospital, Church Lane,Haslemere GU27 2BJ, UK; e-mail:[email protected]
Received: 27 May 2008Accepted: 28 May 2008
Box 1
‘... an unbiased opinion is alwaysabsolutely valueless’
Oscar Wilde. ‘The Critic as Artist’, 1890
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outcomes are recorded. The impor-tance of agreeing goals and targetswith the individual must not be under-estimated. It is so much easier to meeta target if you know what it is – and the reward is evident. Note how welltargets in the new General MedicalServices Contract have been achieved7
when reward is offered!‘The primary goal is to enable the
person with diabetes, or at risk of develop-
ing diabetes, to manage their own lifestyleand diabetes, by providing support andstructured education as well as drugs andtreatment.’ 8
In effecting this change the‘National Service Framework forDiabetes: Standards’9 advises that theNHS and partner agencies need todevelop, review and audit pro-grammes for empowering peoplewith diabetes, including:
• Behavioural change programmes.• Structured education programmes.• The provision of informationabout diabetes and its management.• Effective care plans.• Patient-held accessible records.• The use of new technologies,including the Internet.
Standard 3 of this National ServiceFramework (NSF) provides furtherguidance on empowerment. It statesthat diabetes services will be: ‘Developedin partnership: ensuring goals and therespective responsibilities of the individualand the diabetes team are agreed and clearlyset out in a regularly reviewed care plan.’ 10
The first steps to achieving thestandards are outlined:• ‘Information and appropriate psycho-logical support and the opportunity to participate in structured (usually group)education to people diagnosed with dia-betes after April 2003.’
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Box 2. The National Service Framework: constituents of a personal diabetesrecord including the care plan6
A personal diabetes record:
• Includes an agreed care plan, including education and the personal goalsof the person with diabetes
• Sets out how their diabetes is to be managed until their next review tofoster greater understanding and ownership of the goals of diabetes care
• Identifies health, social care and education needs, how they will be metand who will be responsible
• Identifies the named contact
Figure 1. 2006/2007 State of Healthcare Report11
Findings of the 2006/2007 State ofHealthcare Report
Standard 3. Empowering people with diabetes3. All children, young people and adults with diabetes will receive a service whichencourages partnership in decision making, supports them in managing their diabetesand helps them to adopt and maintain a healthy lifestyle. This will be reflected in anagreed and shared care plan in an appropriate format and language. Whereappropriate, parents and carers should be fully engaged in this process.
Standard 4. Clinical care of adults with diabetes4. All adults with diabetes will receive high-quality care throughout their lifetime,including support to optimise the control of their blood glucose, blood pressure andother risk factors for developing the complications of diabetes.
Standards 5 and 6. Clinical care of children and young people with diabetes5. All children and young people with diabetes will receive consistently high-qualitycare and they, with their families and others involved in their day-to-day care, will besupported to optimise the control of their blood glucose and their physical,psychological, intellectual, educational and social development.6. All young people with diabetes will experience a smooth transition of care frompaediatric diabetes services to adult diabetes services, whether hospital or community-based, either directly or via a young people’s clinic. The transition will be organised inpartnership with each individual and at an age appropriate to and agreed with them.
Standards 10, 11 and 12. Detection and management of long-term complications10. All young people and adults with diabetes will receive regular surveillance for thelong-term complications of diabetes.11. The NHS will develop, implement and monitor agreed protocols and systems ofcare to ensure that all people who develop long-term complications of diabetes receivetimely, appropriate and effective investigation and treatment to reduce their risk ofdisability and premature death.12. All people with diabetes requiring multi-agency support will receive integratedhealth and social care.
Some 85% of PCTs did nothave arrangements forproviding educationprogrammes for patients in their area
Evidence suggests that a two-year wait for those referred forpsychological therapies is notuncommon
46% of trusts rated excellent orgood in 2006/7 compared to40% in 2005/6. Reorganisationdoes not explain under-performance
Some 60 000 people withserious long-term conditionsdid not get the care fromcommunity matrons that wasoriginally planned
National Service Framework Standards10
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• ‘An agreed care plan, a personal diabetes record and named contact withinthe local service to all people diagnosedwith diabetes after April 2003, along withpeople with poor blood glucose control(HbA1c greater than 7.5%).’
Not easy to achieve within existingresources, with a huge shortage ofpsychological support, with few areasmeeting the structured educationprogrammes and little time in pri-mary care to develop care plans(Figure 111).
Are we NICE about educating peo-ple with diabetes? In 2003 the NationalInstitute for Clinical Excellence pub-lished Technology Appraisal No. 60:12
‘Structured patient education is made avail-able to all people with diabetes at the time ofinitial diagnosis and then as required onan ongoing basis, based on a formal, regu-lar assessment of need.’
High-quality structured educationcan have a profound effect on biomed-ical outcomes, and can significantlyimprove quality of life and satisfaction,yet the majority of people with dia-betes cannot access a local course.
I stress that this is my biased opin-ion but I haven’t seen much evidenceof the support promised in the NSF:‘The NHS will need to ensure that serviceproviders have the attitudes, skills andknowledge to provide person-centred care,including communication, counsellingand behaviour change support skills.’
Health professionals have the
enthusiasm to improve diabetes care.We need the resources to manage iteffectively. The NSF acknowledgesthat more staff will be needed to meetthe demands of diabetes care. So whyare diabetes services, includingnurses, facing threats to their role?13
We need more, not less, resources.Hopefully, the Year of Care Project14
will provide the evidence on what istruly needed to plan an effective serv-ice. The aim is to engage individualsfully in the care planning processthrough consultations tailored totheir needs. It will support them tothink through and jointly decide withtheir healthcare professional on theright options for them. The plan theyagree will form the basis of their indi-vidual Year of Care. Sadly, you canseek to empower and engage individ-uals but you cannot make them participate if they are reluctant. Iattended our local TransformingChronic Care Programme, involvingover 70 people with long-term condi-tions, and sought advice on local pro-posals for diabetes care plans. Themajority thought it was important forhealth professionals to know theresults of their investigations andwhat medication they were on but didnot see the benefit of having thatinformation themselves. Change willneed to come gradually, with peopleunderstanding that they have aresponsibility to care for themselvesin partnership with their care teams.
‘Partners in Care’The National Diabetes SupportTeam came to my rescue just weeksbefore this lecture with the publica-tion of ‘Partners in Care’15 whichwas launched at the Diabetes UKAnnual Professional Conference. Atlast, practical examples of new waysof working with individuals, butrequiring little additional resources,are included. Both health profes-sionals and people with diabetes areencouraged to consider their aimsfrom the consultation. Templateswhich can be modified for local useare provided.
I expressed my jealousy that I hadnot thought up one area of goodpractice identified in ‘Partners inCare’. It seems easy now someoneelse has done it. Blood tests are donewell in advance of the clinic appoint-ment so the results are available onthe day. ‘Nothing extraordinarythere,’ you might say but this prac-tice sends the results, in advance, tothe individual to consider so theycan discuss, and address, any con-cerns. Easy to do, requires minimalresources and improves the effective-ness of the consultation – and there-fore care.
Other examples of good practicehighlighted are:• The Expert Patients Programme(http://www.expertpatients.co.uk). • Ask about medicines (http://www.askaboutmedicines.org).
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Table 1. Practical models for improving communication. The old model versus the new
Patient says Health professional respondsOld model New model
‘I hate this exercise plan.’ ‘Then try walking after dinner every ‘What do you hate about it? What would help you night with your husband for 10 do better at it?’minutes.’
‘I’m too busy to take more ‘You need to do this to prevent ‘What sort of activity do you enjoy? What would exercise.’ complications.’ help you incorporate that in your busy life?’
‘I can’t lose weight.’ ‘You’ll need to go on insulin if we ‘What have you tried that has worked? What do can’t get your sugar levels down. you understand about the local schemes Losing weight might prevent that.’ available to you?’
‘I haven’t been able to test ‘It’s hard at first, but just keep trying. ‘What is preventing you from doing that? Do you my blood sugar four times You really need to keep track of it.’ know what the numbers mean?’a day.’
‘I haven’t been taking those ‘They are really important. Do keep ‘Tell me about your reasons. Do you know what pills regularly.’ trying to remember.’ they are for and how they work?’
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• Peer supported structured educationprogrammes: DAFNE, DESMOND,and X-PERT.• Integration of community pharma-cists in medicines use review (MUR)as part of the care plan.
If neither the patient nor the healthprofessional has set an agenda for theconsultation it is unlikely they possessgood communication skills either.Frequently, when pressed for time, Ihave found myself asking closedquestions: those requiring ‘yes’ or‘no’ as an answer. It’s quick. It is alsoineffective. Care planning encour-ages us to use a more investigativeapproach (Table 1).
Guildford & Waverley care planIn the area where I work we arepiloting our own care plan.Although too large to reproducehere it is designed to be completedby the person with diabetes in liai-son with their health care team. Onepage contains our graphic represen-tation of their metabolic targets(Figure 2) enabling people with diabetes to track improvements theyhave made.
Why bother?People with diabetes spend, on average, just two to three hours ayear interacting with health profes-sionals. We need to be prepared to examine our practice and be will-ing to adopt new ways of workingeffectively within existing resources.
Why bother? In the words of theadvert: • ‘Because we’re worth it.’• Because people with diabetes areworth it. And…• Because the lead Mary MacKinnongave us is worth it.
Conflict of interest statementThere are no conflicts of interest.
References1. MacKinnon M. Providing Diabetes Care
in General Practice. London: ClassPublishing.
2. Audit Commission. Testing Times. AReview of Diabetes Services in England andWales. London: Audit Commission,2000.
3. Middleton JF, McKinley RK, Gillies CL.Effect of patient-completed agendaforms and doctors’ education about theagenda on the outcome of consulta-tions: randomised controlled trial. BMJ2006; 332: 1238–1242.
4. Our health, our care, our say: a new direc-tion for community services. London:Stationery Office, 2006. http://www.dh.gov.uk/en/Healthcare/Ourhealthourcareoursay/index.htm [accessed21/5/08].
5. Diabetes UK and Department ofHealth. Care Planning in Diabetes.London: Department of Health, 2006.
6. Department of Health. National ServiceFramework for Diabetes: Delivery Strategy. London: Department ofHealth, 2002; 15.
7. The Information Centre. Quality andOutcomes 2006/2007 results. http://www.ic.nhs.uk/webfiles/QOF/2006-07/National%20QOF%20tables%202006-07%20-%20clinical.xls [accessed 21/5/08].
8. Department of Health. National ServiceFramework for Diabetes: Standards.London: Department of Health, 2001;11. http://www.library.nhs.uk/healthmanagement/ViewResource.aspx?resID=29618 [accessed 21/5/08].
9. Department of Health. National ServiceFramework for Diabetes: Standards.London: Department of Health, 2001;23. http://www.library.nhs.uk/healthmanagement/ViewResource.aspx?resID=29618 [accessed 21/5/08 ].
10. Department of Health. National ServiceFramework for Diabetes: Standards.London: Department of Health, 2001; 5 & 14. http://www.library.nhs.uk/healthmanagement/ViewResource.aspx?resID=29618 [accessed 21/5/08].
11. Healthcare Commission. State ofHealthcare 2007. London: StationeryOffice, 2007. http://www.healthcarecommission.org.uk/nationalfindings/stateofhealthcare.cfm [accessed 21/5/08].
12. National Institute for ClinicalExcellence. Guidance on the use of patient-education models for diabetes. TechnologyAppraisal 60. London: NICE, 2003.
13. Diabetes UK, Association of ClinicalDiabetologists, Primary Care DiabetesUK, Royal College of Nursing,Community Diabetes Consultants. JointPosition Statement. Integrated care in thereforming NHS – ensuring access to highquality care for all people with diabetes.London: Diabetes UK, 2007.
14. Diabetes UK, the Department ofHealth, the Health Foundation and theNational Diabetes Support Team. The Year of Care Project, 2006.http://www.diabetes.nhs.uk/work-areas/year-of-care [accessed 21/5/08].
15. National Diabetes Support Team.Partners in Care: A Guide to Implementinga Care Planning Approach to Diabetes Care,2008. http://www.diabetes.nhs.uk/news-1/Partners%20in%20Care.pdf[accessed 21/5/08].
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Figure 2. Guildford & Waverley care plan page on metabolic targets
Guildford & Waverley care plan
Cholesterol
6mmol/L
5mmol/L
4mmol/L
Body mass index
Over 30
25–30
20–25
HbA1c
8%
7%
6%
Blood pressure
Over 135/85
135/85
130/80
125/75 if kidney problems
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