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Diabetes

Update For healthcare professionals • Spring 2011

Monogenic diabetes Referral, testing, diagnosis and clinical care

The eyes have it Sneaking a peek at advances in retinopathy research and treatment

Come on in The Diabetes UK guide to making user involvement happen

PLUS Diabetes UK’s five-year Research Strategy, the cost of diabetes care, national audits 2010, all the latest news and more

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Searching

for the

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Call 0800 731 7431 for a quote or more information. Ref: UPDATE. Alternatively, visit www.diabetes.org.uk/services now for more information and a 5% discount off your travel insurance policy.

Diabetes UK Insurance Services is a trading name of Heath Lambert Limited which is authorised and regulated by the Financial Services Authority. www.heathlambert.com

s

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Contents

In this issue 4

News Public Health White Paper, 100,000 wrongly diagnosed, Health and Social Care Bill, Diabetes UK’s five-year plan, DKA and children, Quality in Care awards, advocacy resources, pregnancy care and more

Features 22

Diabetes Update is produced by Diabetes UK for all healthcare professionals with an interest in diabetes. Healthcare professional members of Diabetes UK receive Diabetes Update as a membership benefit.

For more on receiving Diabetes Update, contact the Diabetes UK Supporter Services team on 0845 123 2399 or email supporterservices@diabetes.org.uk Advertisements and articles Articles in Diabetes Update written by freelance contributors do not necessarily represent the views of Diabetes UK. Diabetes UK policy statements are always clearly identified as such.

Diabetes Update welcomes original contributions from healthcare professionals. All potential submissions should be made in writing for editorial consideration and should include a synopsis of the suggested feature or issue. All submissions should be sent to: Diabetes Update, Diabetes UK, 10 Parkway, London NW1 7AA or update@diabetes.org.uk Products and services advertised in Diabetes Update are not necessarily recommended by Diabetes UK. Any comments regarding advertised services or products, or enquiries regarding future advertisement bookings, should be addressed to: Claire Barber, Display Sales Executive, Ten Alps Publishing, One New Oxford Street, High Holborn, London WC1A 1NU 020 7878 2319 Claire.Barber@tenalps.com Editor Brian Burns Designer/art editor John Clarkson Editorial assistant Kate Flagg

Diabetes Update is printed by Gemini Press, Shoreham-by-Sea, West Sussex BN43 6NZ www.gemini-group.co.uk 01273 464884 Contact Clare Kiff at c.kiff@gemini-group.co.uk

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Come on in The Diabetes UK guide to getting people with diabetes involved in improving their services The eyes have it Taking a sneak peek at advances in retinopathy research and treatment National Diabetes Audit 2010 Progress overall but room for improvement – and from 2011, Diabetes UK will play a pivotal role

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Regulars 12

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Research focus GP training scheme, artificial pancreas and pregnancy, obesity gene, cardiovascular polypill and more Comment Diabetes UK’s new five-year Research Strategy Talking clinic The referral, diagnosis and treatment of monogenic diabetes, frequently misdiagnosed as Type 1 or Type 2 Medicine digest Diabetes drugs account for 6.9 per cent of the national drug bill. Is it time to cut the cost?

At your service Achieving integrated diabetes services in Newcastle with SystmOne Care delivery The National Diabetes Inpatient Audit 2010 drew a healthy response. Are the findings in good shape too?

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Inserts • Wallchart • Fact file • Diary dates

Insulins Testosterone deficiency syndrome 11 April to 25 June

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Diabetes UK addresses Diabetes UK Central Office Diabetes UK Cymru Diabetes UK Eastern Diabetes UK Midlands Diabetes UK London Diabetes UK Northern Ireland Diabetes UK Northern & Yorkshire Diabetes UK North West Diabetes UK Scotland Diabetes UK South East Diabetes UK South West

020 7424 1000 029 2066 8276 01376 501390 01922 614500 020 7424 1116 028 9066 6646 01325 488606 01925 653281 0141 245 6380 01372 720148 01823 324007

info@diabetes.org.uk wales@diabetes.org.uk eastern@diabetes.org.uk midlands@diabetes.org.uk london@diabetes.org.uk n.ireland@diabetes.org.uk northyorks@diabetes.org.uk n.west@diabetes.org.uk scotland@diabetes.org.uk south.east@diabetes.org.uk south.west@diabetes.org.uk

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Healthy lives, healthy people The Public Health White Paper Healthy Lives, Healthy People: Our Strategy for Public Health in England was launched in November 2010. The paper responds to Professor Sir Michael Marmot’s review of health inequalities, Fair Society, Healthy Lives, and sets out a shift of power to local communities to enable them to improve health, reduce inequalities and focus on the needs of the local population.

Under the proposals, funding from the overall NHS budget will be ringfenced for public health spending. A new, dedicated ‘wellness’ public health service, Public Health England, will be set up as part of the Department of Health to support local action on public health while also strengthening the national response on emergency preparedness for population-wide issues such as flu pandemics.

At a local level, statutory health and wellbeing boards will be established to encourage

partnership working between health, social care and public health. Joint health and wellbeing strategies will be developed to support joined-up commissioning.

There will also be further consultation on a public health outcomes framework, to work alongside those for the NHS and social care, covering: protecting

people from major health emergencies and serious harm; addressing factors that affect health and wellbeing; positively promoting ‘healthy’ lifestyles; reducing the number of people living with preventable ill health; and preventing people from dying prematurely.

Specific plans for tobacco control, alcohol, drugs, obesity, sexual health and teenage pregnancy, pandemic flu preparedness, health protection and emergency preparedness, together with cross-government strategies addressing the wider determinants of health, are to be published during the course of this year.

At the time of going to press, the White Paper was out for consultation. Update will keep you informed.

i To read Healthy Lives, Healthy People, visit www.dh.gov.uk/en/ Publicationsandstatistics/Publications/ PublicationsPolicyAndGuidance/ DH_121941.

100,000 wrongly diagnosed Approximately 100,000 people in England may have been incorrectly diagnosed with diabetes, according to a new report by the Royal College of General Practitioners and NHS Diabetes, who have published new guidance aimed at improving the way diabetes is recorded.

Reviews at five GP practices in Surrey, covering 45,000 patients, found that 2 per cent of those diagnosed with diabetes did not have it, another 2 per cent were labelled with the wrong type of the condition, and a further 1 per cent had been incorrectly logged on surgery computer systems. If the same is true in other regions, it is likely that around 50,000 people in England are diagnosed with diabetes who do not have it, and another 50,000 with Type 2 when they have Type 1, and vice versa.

4 | Diabetes Update | Spring 2011

For every 500 people with diabetes on a GP register, about 65 to 70 will need to be looked at again for errors.

According to the report, medical staff make mistakes when entering patient information, and there is a lack of understanding of diabetes among doctors and other healthcare professionals. It also states that the sharp rise in excessive weight has made it harder to differentiate between Type 1 and Type 2, which could have a considerable impact on patient care, as the guidelines for insulin use in each condition are very different.

Simon O’Neill, Director of Care, Information and Advocacy, Diabetes UK, told Update: “This report does highlight a significant problem. People want to know what is wrong with them, what that means and what can be

The report suggests medical staff make errors when entering patient information

done to help them. Without an accurate diagnosis, how can people with diabetes be sure that their condition is being managed effectively? We need to ensure better data collection and recording to enable us to provide the most appropriate care.”

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Health and Social Care Bill The Health and Social Care Bill was laid before Parliament on 19 January.

The Bill includes proposals to abolish primary care trusts and strategic health authorities, and establish the NHS Commissioning Board, commissioning consortia, health and wellbeing boards and HealthWatch.

The Bill also deals with proposals for trusts and foundation trusts, and changes to arm’s-length bodies, including Monitor becoming an economic regulator; and changes also to the roles of the Health and Social Care Information Centre and the National Institute for Health and Clinical Excellence.

Diabetes UK has urged the Government to make vital changes to the Bill, warning that some of the proposed changes will fragment commissioning and be detrimental to integrated care and partnership working. The charity submitted its written briefing to the Bill Committee on 17 February, expressing concerns that the new arrangements will mean that no single healthcare body will be accountable to people with diabetes for the delivery of their care.

Diabetes UK will be lobbying hard to ensure: • the Bill is strengthened to ensure integrated working and service provision • people with diabetes, and the multidisciplinary range of professionals with expertise in diabetes care are involved

•

•

• •

in the commissioning of diabetes services increased accountability of commissioners, in particular for integrated working people with diabetes will have access to the range of skilled professionals they require for their care participation in national clinical audits are made mandatory standards of quality are more strongly embedded within the Bill.

i To read the Bill and track its progress through Parliament, visit http://services.parliament.uk/bills/201 0-11/healthandsocialcare.html.

Health Secretary Andrew Lansley is the sponsor of the Health and Social Care Bill

Health charities respond As the Health and Social Care Bill reached committee stage on 8 February, eight leading health charities, including Diabetes UK, the British Heart Foundation and The Stroke Association, wrote to the Editor of The Times, stating: ‘The plans will allow local authorities to replace existing democratically elected overview and scrutiny committees with their own systems. Given the unprecedented devolution of power, we urge the Government to amend the Bill and insist on a strong independent scrutiny function led by democratically elected representatives.’

The letter also expressed concern that while the reforms will place £80bn of the NHS budget in the hands of GPs, plans to make GP consortia accountable to the public are ‘far too weak’. It also addded: ‘The new local HealthWatch bodies described in the Bill will not have the powers or resources to ensure patients have a say in their local health services. If they are to serve a meaningful purpose, they must be significantly strengthened.’

DKA before diagnosis One in four children with Type 1 experiences diabetic ketoacidosis (DKA) before being correctly diagnosed with diabetes, according to an article published in the BMJ in February.

The research, led by Dr Julie Edge, Consultant Paediatric Diabetologist at Oxford Children’s Hospital, also shows that 30 per cent of newly diagnosed children have had at least one related medical visit prior to diagnosis, suggesting that doctors are missing

the condition. Early symptoms of diabetes, such as excessive thirst and frequent urination, especially with recent-onset of bed-wetting, are frequently not recognised as being caused by diabetes. In addition, 35 per cent of children under five have DKA at diagnosis.

Simon O’Neill, Director of Care, Information and Advocacy at Diabetes UK, told Update: “Around 2,000 children are diagnosed with Type 1 diabetes every year.

It’s worrying that a quarter are

only diagnosed through DKA – highlighting the need for more awareness of diabetes symptoms if we are to reduce the numbers of children being rushed to hospital.”

Led by Dr Rowan Hillson and NHS Diabetes, Diabetes UK and the Juvenile Diabetes Research Foundation are working jointly to tackle delayed diagnosis and misdiagnosis of diabetes in children, and to raise awareness of Type 1, to prevent children being at risk of DKA. Spring 2011 | Diabetes Update | 5

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Future directions for Diabetes UK Diabetes UK has reset its plans for the next five years, and what it aims to deliver for people living with diabetes and the healthcare professionals who support them.

Barbara Young, Chief Executive of Diabetes UK, told Update: “With the tectonic plates of the NHS shifting around us, and financial pressures greater than ever before, Diabetes UK needs to work with patients, volunteers and healthcare professionals to safeguard services for people with diabetes.”

The Diabetes UK Board has now approved strategic priorities for the next five years. To begin with, Diabetes UK will be fostering debate on the longer-term goals of diabetes care, to reduce the rate of increase of the condition and prevent its complications.

Barbara Young said: “The major focus on cancer and heart disease in recent years has seen reductions in rates of increase and greatly improved care. This urgently needs to happen for diabetes, a major cause of blindness, amputation, heart disease, renal disease and stroke.

More than 3.5 million people in the UK are estimated to have diabetes – 2.8 million diagnosed and 850,000 undiagnosed – and the number is rising fast.”

In line with the strategic priorities, over the next five years, Diabetes UK will: • Articulate clear standards for diabetes services and monitor whether they are being met and

Barbara Young, Chief Executive, Diabetes UK

quality services achieved.

The charity will work with volunteers and healthcare professionals to spot, early on, signs of commissioning changes and the financial squeeze affecting the quality of services, and raise these concerns with commissioners and providers on behalf of patients and healthcare professionals.

• Provide people with diabetes with improved information and support services better targeted at their particular needs.

• Make a major contribution to efforts to promote healthy lifestyles and the prevention of Type 2 diabetes.

• Continue to fund life-changing research of the highest quality.

• Campaign vigorously to raise the profile of diabetes and develop a national sense of urgency for tackling the rising number of people being diagnosed with the condition.

• Work in partnership with a growing number of healthcare professionals and volunteers.

Barbara Young said: “We will be asking healthcare professionals what they want from Diabetes UK and what we can achieve together for people with diabetes. I look forward to that strong partnership.”

Tea and talk The theme for Diabetes Week (12–18 June), Diabetes UK’s annual UKwide awareness and fundraising week, is ‘Let’s talk diabetes’, with all funds raised going towards expanding the Diabetes UK Careline. Before then, why not hold a tea party on Care for a Cuppa Day (7 May) – or at any time of the year – to help support Diabetes UK’s work. Details below.

i Diabetes Week: call 0800 585 088, visit www.diabetes.org.uk/diabetes week or email diabetesweek@diabetes.org.uk. • For a free ‘Care for a Cuppa’ party pack, call Diabetes UK’s Events Fundraising team on 020 7424 1000, email events.fundraising@diabetes.org.uk or visit www.diabetes.org.uk/ Care-for-a-Cuppa.

‘Never events’ list now longer The Government has extended its ‘never events’ list to include the maladministration of insulin.

‘Never events’ are serious, largely preventable patient safety incidents that should not occur if NHS service providers take the appropriate preventative measures.

Following a 2010 engagement exercise, a list of eight core ‘never events’, published in 2009, has been revised and expanded to 25. The new list has now been published for use 6 | Diabetes Update | Spring 2011

in the NHS, along with guidance on implementing the policy.

The revised policy introduces financial measures to penalise service providers when ‘never events’ do occur, eg withholding payment for services. This puts patient safety very much to the fore and encourages NHS service providers to learn from their mistakes, so that these events do not happen again.

NHS organisations will have a

statutory requirement to report all serious patient safety incidents to the National Reporting and Learning System, which analyses confidential reports of patient safety incidents from the Care Quality Commission and healthcare providers in England and Wales.

i For the new list and policy guidance, visit www.dh.gov.uk/en/ Publicationsandstatistics/Publications/Pub licationsPolicyAndGuidance/DH_12455.

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Quality in Care awards The Quality in Care (QiC) diabetes healthcare professional awards programme, QiC Diabetes, was officially launched on 9 March at the Healthcare Innovation Expo 2011.

QiC Diabetes seeks entries, UK wide, from initiatives demonstrating good practice in the treatment and care of people with diabetes. The entry deadline is 19 May. The judging panel, which will be led by Anna Morton, Director of NHS Diabetes, will meet in May and June to review the entries and a shortlist will be announced

in July. Winners will be announced in October at the first QiC Diabetes awards presentation, in London.

First-place winners will take home £1,000 to spend on advancing their initiatives.

There is also a special ‘People’s Award’, which encourages people with diabetes to nominate someone who has gone beyond the call of duty and made a real difference to their lives.

i For details, including how to enter, go to www.qualityincare.org or email acameron@qualityincare.org.

HbA1c – end of dual reporting From 1 June 2011, HbA1c will only be reported using the International Federation of Clinical Chemistry method of mmol/mol. Diabetes UK has been putting these values before the Diabetes Control and Complications Trial aligned percentage in all its literature to help people remember.

i For further details and a conversion calculator, visit www.diabetes.org.uk/hba1c.

Know your rights in education Diabetes UK has produced a new advocacy pack, Education and Diabetes – Your Rights in Early Years Settings, Schools, and Further and Higher Education, to explain in detail the duties of education providers under the Equality Act 2010.

It is illegal for providers of education to discriminate against people because of their disability, and schools are obliged to make ‘reasonable adjustments’ so that pupils with diabetes are not disadvantaged. The new advocacy pack includes information on how education providers should treat people with diabetes, the rules on discrimination in education, and what people can do if they think they have been illegally discriminated against.

Other Diabetes UK advocacy packs are Employment and Diabetes – Your Rights at Work, Availability of Blood Glucose Test Strips and Having Diabetes in Prison. The charity is asking healthcare professionals to publicise the Diabetes UK Advocacy Service and its advocacy packs to patients who could benefit.

i To download the advocacy packs, visit www.diabetes.org.uk/advocacy.

• To contact the Advocacy Service, call 020 7424 1840 or email advocacy@diabetes.org.uk.

Know your symptoms On 21 March, Diabetes UK Cymru launched a poster-led campaign to raise awareness of diabetes symptoms in Wales.

A bilingual acrostic poster spells out the symptoms of diabetes from the word ‘diabetes’ and recommends that people with the symptoms have a diabetes test. Copies were sent to every doctor’s surgery and pharmacy in Wales, and to diabetes specialist nurses, libraries and district hospitals.

The campaign, supported by TV’s Dr Sarah Jarvis, aims to highlight the symptoms of the condition in a bid to find the 66,000 people now estimated to have undiagnosed diabetes in Wales.

Dai Williams, National Director, Diabetes UK Cymru, told Update: “With ever more people being diagnosed with diabetes in Wales, and growing numbers thought to have undiagnosed diabetes, we wanted to highlight the condition’s symptoms. The earlier people are diagnosed, the less likely they are to have developed diabetic complications, which can be life-threatening.

“The acrostic poster communicates the symptoms in an easy way, and we hope it will help people living with undiagnosed diabetes to get the diagnosis they need.”

i To order copies, call Diabetes UK Cymru on 029 2066 8276 or email wales@diabetes.org.uk.

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New guidance for pregnancy care At the end of 2010, NHS Diabetes and the Royal College of Midwives published new guidance to improve the standard of care pregnant women with diabetes can expect to receive.

Lead Midwife in Diabetes: Standards, Role and Competencies aims to address the findings of previous studies that revealed poor standards in diabetes maternity services, and found women with diabetes were five times more likely to have stillbirths. The document outlines previously unavailable standards for the role and practice of midwives undertaking a midwifery lead in the care of women with diabetes who are pregnant, or women who develop diabetes during pregnancy.

The guidance also aims to provide a resource for local health services to use to underpin and strengthen midwifery and maternity care for women whose pregnancy may be complicated by diabetes.

Care of pregnant woman with diabetes, including those with gestational diabetes, should be provided by a multidisciplinary team, which should be present at the same time in the same setting and, as a minimum, comprise an obstetrician, diabetes physician, diabetes specialist nurse, diabetes midwife and dietitian.

Anna Morton, Director of NHS Diabetes, said: “Diabetes is increasing within the general population and this is impacting on the delivery of care and the outcomes for women and babies. Maternity services need to be proactive in addressing the needs of these women locally.

“This guidance document means that NHS services delivering maternity care for women with diabetes now have the blueprint of what is needed to provide high-quality care.”

In addition to the new guidance, a dedicated Diabetes Midwives site has been launched on NHS Networks, enabling midwives with a special interest in diabetes to share good practice and experience with each other.

i To download the guidance, visit www.diabetes.nhs.uk/ publications_and_resources/reports_and_guidance.

• The Diabetes Midwives site on NHS Networks now has more than 180 members; visit www.networks.nhs.uk/nhsnetworks/diabetes-midwives.

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GlucoMen LX PLUS launched

Textbook case The fourth edition of the Textbook of Diabetes is now available from WileyBlackwell publishers.

This sizeable book has been condensed into one volume with 12 sections and 62 chapters, each clearly laid out with colour diagrams, tables and a very useful summary of key points.

The book is expansive in scope, with chapters covering: the history of diabetes and its treatment; normal and abnormal physiology; management of diabetes and its complications; rarer forms of diabetes; an overview of the delivery of care; and future directions.

Textbook of Diabetes is also available electronically, with a PDF for each chapter, making key-word searches the quickest way to pinpoint relevant information. For those who want to try before they buy, the book’s entire references are freely available online, each helpfully linked to its PubMed abstract.

i Textbook of Diabetes (RRP £175) is available to Update readers at a 20 per cent discount. To order, visit www.wiley.com, quoting code VB271; offer expires 30 June 2011. • For further details, visit www.textbookofdiabetes.com.

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Interactive information

GlucoMen has launched GlucoMen LX PLUS, the first no-coding blood glucose and blood ketone meter for people with diabetes.

Ian Stiles, Product Manager at GlucoMen Diabetes Care, told Update: “GlucoMen LX PLUS uniquely eliminates meter coding errors, a common mistake that causes inaccurate test results. Accurate test results are crucial to make sure that patients inject insulin correctly and stay healthy.”

Both test strips (GlucoMen LX and GlucoMen LX ketone) are available on prescription for people with diabetes, at no cost.

i For more on the GlucoMen LX PLUS, visit www.glucomen.co.uk.

Diabetes UK has produced a new interactive patient education programme on CD-ROM that is tailored to people with Type 2 diabetes in the South Asian community.

Sponsored by Lily, Type 2 Diabetes – Interactive Patient Information is designed to help people with diabetes in the South Asian community better manage their condition and improve their quality of life.

People in this community are up to six times more at risk of developing diabetes than the white population living in the UK. The new resource provides culturally relevant information on what diabetes is, and on diet, fasting and how to test blood glucose levels. With interactive animations and full voice-over and subtitles, the CD-ROM format is easy to use and understand, and is a helpful tool both for South Asian people with diabetes and healthcare professionals.

i To order the CD-ROM Type 2 Diabetes – Interactive Patient Information (free+p&p, 5672), call 0800 585 088 or visit www.diabetes.org.uk/shop.

BSL update Diabetes UK’s collaboration with the RNID to produce information in British Sign Language (BSL) for deaf people with diabetes has now been completed.

BSL translations of Diabetes UK’s core leaflet Understanding Diabetes and the charity’s animation ‘Your body’, which describes the biological processes of diabetes, are now available on YouTube. Both films are also subtitled.

Clare Chilton, BSL Clare Chilton, BSL Specialist at RNID and a Specialist at RNID former presenter on the BBC’s See Hear television programme, provided the BSL for the videos. Clare told Update: “There are hundreds of deaf people out there who have diabetes but struggle to gain access to information, so the fact that Diabetes UK has now released information in BSL can’t be commended highly enough.”

Diabetes UK is asking healthcare professionals to publicise these resources to patients who could benefit.

i To download Diabetes UK’s BSL resources, visit www.diabetes.org.uk/BSL.

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Research focus Katherine Woods brings you the latest developments in diabetes research and the next round of funding application deadlines

New Research Strategy In February, Diabetes UK launched its new five-year Research Strategy to guide its investment in research from the start of 2011.

The charity’s research mission is ‘to improve the lives of people with diabetes and at high risk of diabetes, and to work towards a future without diabetes’. The new strategy aims to achieve this goal by investing in research to support Diabetes UK’s three strategic priorities, launched in 2009: • Quality care for all. Research will help to provide the evidence base to underpin and inform Diabetes UK’s wider activities, ensuring that everyone diagnosed with diabetes receives the most effective care, and that all public and private institutions act inclusively for all those living with diabetes and do not tolerate discrimination of any kind.

• Healthy lifestyle. Research will help to provide people with all types of diabetes, as well as healthcare professionals, with the best available evidence regarding nutrition and physical

cures, improving treatments, avoiding complications and addressing mental health issues.

activity. This will lead to better control of diabetes for those with the condition and will help to prevent Type 2 diabetes developing in those who are at particular risk.

• Research for a better life.

Research will help to improve the lives of people living with diabetes in the short, medium and long term. This includes basic research looking at the causes of diabetes and potential

Dr Iain Frame, Director of Research at Diabetes UK, told Update: “Through this strategy, Diabetes UK will continue to fund the highest-quality research to bring about improvements to the lives of people living with diabetes and those at high risk. We’re also committed to supporting people affected by diabetes to be involved in all stages of the research process from setting strategies through to monitoring the progress of funded research studies. We will continue to do this and, importantly, where research results provide the evidence base needed to lead to improvements in quality of care, Diabetes UK will ensure that they are brought to the attention of policy makers and those tasked with implementing policies to benefit as many people as possible.”

i To read the full strategy, visit www.diabetes.org.uk/research_strategy.

• See also Comment, page16.

GP research training scheme In February, Diabetes UK and the Royal College of General Practitioners (RCGP) launched a jointly funded research initiative, The Diabetes UK-RCGP Academic Fellowship in General Practice.

While GPs play a vital role in supporting diabetes diagnosis and its management, a lack of research training opportunities has limited the extent that they can use their expertise to answer questions to help improve practice in primary care.

The fellowship aims to support GPs who have completed vocational training within the last five years to 12 | Diabetes Update | Spring 2011

undertake training in research at a UK Higher Education institution leading to an MSc or MRes relevant to diabetes research.

Dr Iain Frame, Director of Research at Diabetes UK, said: “Diabetes UK is delighted to join forces with the RCGP to launch a research training scheme that aims to help plug the gap that exists in research training for General Practitioners. GPs are key in delivering essential improvements in the diagnosis, management and treatment of diabetes, and through this fellowship Diabetes UK and the RCGP aim to support promising

research-focused GPs in gaining the research training they need to help further improve the lives of people living with diabetes.”

i For further details of the initiative, including how to apply, visit www.diabetes.org.uk/applyingfor-a-grant.

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Research focus

Artificial pancreas success in pregnant women Diabetes UK-funded researchers working at the University of Cambridge have successfully demonstrated the potential of an artificial pancreas for pregnant women with Type 1 diabetes.

Pregnancy poses additional risks for women with diabetes as hormonal changes make it very difficult to keep blood glucose levels within a safe range, especially at night. As a result of high blood glucose levels, babies of women with diabetes are five times as likely to be stillborn, three times as likely to die in their first months of life and twice as likely to have a major deformity. Furthermore, low blood glucose in pregnancy is a major cause of maternal mortality. Two in three mothers with pre-existing diabetes have Type 1 diabetes.

Published in the February 2011 issue of Diabetes Care, the study evaluated the performance of an artificial pancreas or ‘closed-loop insulin delivery system’ in 10 pregnant women with Type 1 diabetes. Led by Dr Helen Murphy, the researchers found the device

was able to provide automatically the right amount of insulin at the right time, maintain near normal blood glucose levels and, in turn, prevent nocturnal hypoglycaemia in both early and late pregnancy.

The artificial pancreas was created by combining a continuous glucose monitor (CGM) with an insulin pump. Previous studies have shown improved blood glucose control and reduced hypoglycaemia with overnight use of an artificial pancreas in children with Type 1, but this is the first time it has been successfully used in pregnant women with the condition.

Diabetes UK Director of Research, Dr Iain Frame, told Update: “Although early days, this exciting area of research, funded by our donors, has huge potential to make pregnancy much safer for women with Type 1 diabetes, and their babies.

“It’s a fantastic example of how existing technologies, in this case, insulin pumps and CGMs, can be adapted and developed to benefit as many people with diabetes as possible. We now need to see an extension of this study, one that tests larger numbers of women, and then take it out of the hospital and into the home setting.”

Shedding light on the ‘obesity gene’ In April 2007, researchers discovered the first gene with a definite link to obesity. They found that people with two copies of a particular version of the FTO gene (around 16 per cent of people of European descent) are on average 3kg heavier than those with two normal copies, and 70 per cent more likely to be obese.

This study was part of the Wellcome Trust Case Control Consortium, one of the biggest projects ever undertaken to identify the genetic variations that may predispose people to, or protect them from, major diseases and conditions. However, until now researchers have not known whether the FTO gene is directly responsible for this effect, or whether it acts by influencing other nearby genes.

Writing in the journal Nature Genetics in November, researchers

Extra copies of the FTO gene cause mice to consume more food

from the University of Oxford and the Medical Research Council (MRC) Harwell reported evidence suggesting, for the first time, that differences in the activity of the FTO gene itself could be directly responsible for increases in body weight. Professor Roger Cox at MRC Harwell and Professor Frances Ashcroft at the University of Oxford found that female mice

with two extra copies of the FTO gene consumed more food and became 22 per cent heavier than normal female mice after 20 weeks.

The difference in weight for male mice was 10 per cent.

These results are a step forward in understanding why people with certain FTO variants are more prone to obesity. The next step for researchers is to understand why extra copies of the FTO gene cause mice to consume more food: does it, for example, increase appetite by influencing the brain or alter messages from fat stores and other tissues? They can then investigate whether these mechanisms are similar in humans. Understanding how the gene contributes to obesity could then lead to developing drugs to decrease the gene’s activity in people with serious weight problems.

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Research focus

Cardiovascular ‘polypill’ trial

Gene study seeks siblings of Type 1 patients

Researchers at Imperial College NHS Trust, led

by Professor Simon Thom, are recruiting adults with an increased risk of cardiovascular disease, or existing cardiovascular disease to take part in a study comparing the ‘polypill’ – a single tablet containing aspirin, a statin and two blood pressure-lowering medicines – to the usual medicines used to control cholesterol and/or blood pressure.

Researchers at the University of Cambridge and Cambridge University Hospitals NHS Foundation Trust are recruiting 2,400 participants for the Diabetes-Genes, Autoimmunity and Prevention (D-GAP) study. Led by Professor David Dunger and funded by the Juvenile Diabetes Research Foundation, the aim of D-GAP is to understand how and why genes associated with Type 1 diabetes directly affect the immune system.

Ultimately, this could help researchers to identify ways to prevent or reverse the progression of Type 1 diabetes.

Participants should be aged 5–17, without Type 1 diabetes but with a brother or sister who has Type 1 and who was diagnosed below the age of 16.

i To download the questionnaire, visit www.diabetes.org.uk/umpire and return by post to Dr Filomena Paciello, International Centre for Circulatory Health, 59–61 North Wharf Road, London, W2 1LA; or email ciu@imperial.nhs.uk.

i For more information and to refer potential participants, please contact the D-GAP study team at d-gap@paed.cam.ac.uk.

Research application deadlines 31 May 2011 Fulbright–Diabetes UK Research Award. Each year, the Fulbright Commission, in conjunction with Diabetes UK, offers one award to a UK citizen in support of research at any accredited US institution into the clinical or biomedical aspects of diabetes, or the social or economic issues faced by people living with diabetes.

The award is for a period of 12 months beginning at any point between 1 August 2012 and 30 April 2013.

1 June 2011 Diabetes UK’s Project Grants provide support for highquality, diabetes-related research. Applications should normally be for hypothesis-driven projects, and support may be requested for up to five years. There is no limit to the research expenses that may be requested, but all requests must be fully justified.

6 June 2011 Diabetes UK–RCGP Academic Fellowship in General Practice. These fellowships are open to GPs who have

completed training within the last five years and who wish to undertake training in research at a UK Higher Education institution leading to an MSc or MRes relevant to diabetes research.

Throughout the year Diabetes UK’s Small Grants (up to £15,000) enable researchers to undertake small research projects or pilot studies related to diabetes. Applications can be submitted at any time and are considered on a rolling basis.

The European Foundation for the Study of Diabetes Albert Renold Travel Fellowships for Young Scientists (up to €7,000) enable young scientists to travel and work at other institutions for up to three months to learn different scientific techniques related to diabetes research.

Either the home or the host institution must be based in Europe or an associated country.

i Diabetes UK: www.diabetes.org.uk.

Fulbright Commission: www.fulbright.co.uk.

European Foundation for the Study of Diabetes: www.europeandiabetesfoundation.org.

Royal College of General Practitioners: www.rcgp.org.uk.

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Comment

Five-year plan Diabetes UK has just set out its new five-year Research Strategy. Dr Iain Frame, Director of Research, Diabetes UK, describes how it’s different and how it will work, and outlines some of the priority areas for funding

“

One of the main difficulties is that, very often, we work with a small cadre of researchers with a proven track record in their area

Diabetes UK’s new Research Strategy will guide everything that the organisation does for the next five years in terms of research.

Compiled by people living with diabetes, researchers, clinicians, allied healthcare professionals and Diabetes UK’s Research team, Working Together Towards a Future Without Diabetes And Its Complications is a strategy designed to be delivered by research supported by Diabetes UK, and to meet the needs of people living with diabetes.

Diabetes UK’s Board of Trustees is keen that, in any given year, some of the available budget is used to commission research that aims to answer specific questions and plug gaps in the portfolio where the organisation has, previously, struggled to fund work of an international calibre. In each year of the strategy, 20 per cent of the budget will target areas that the Science and Research Advisory Group identifies as priorities.

This is a really exciting development for Diabetes UK. However, one of the main difficulties in the commissioning process is that, very often, we work with a small cadre of researchers with a good track record in their area. Those researchers would be best placed not only to advise the organisation on what to commission, but also to undertake the actual research. Clearly, then, the procedures for identifying and commissioning research needed to have in place a robust and transparent mechanism to ensure we avoid this obvious conflict of interest.

Our approach will follow the National Institute for Health Research Health Technology Assessment (NIHR HTA) programme’s current model. This will involve two distinct groups. The first, the Identification and Prioritisation Panel, has the remit to identify research needs and score them for importance on a rolling basis during the strategy period. This group, effectively Diabetes UK’s Science and Research Advisory Group, consists of people living with diabetes, diabetologists and other relevant healthcare professionals, and can, when needed, co-opt other expertise, experience and guidance on

“

16 | Diabetes Update | Spring 2011

any given topic. The Research team will then develop vignettes refining research questions in the context of past research results and ongoing trials and studies. Several experts in the area, who will be named on the vignettes, will then be asked to review the document and declare any interests. The Identification and Prioritisation Panel will use the vignettes to agree which area, or areas, Diabetes UK should target for funding.

Once the research questions have been identified, the second group, the Commissioning Group, will consider the applications in open competition and make recommendations for commissioning based on peer review. This group will consist mainly of methodologists, statisticians, trialists, health economists, diabetologists and people living with diabetes. It will also include members of Diabetes UK’s Research Committee, to ensure quality control across all of the organisation’s research funding processes.

So far, the Identification and Prioritisation Panel has completed the first stage of the process and identified priority areas that will allow Diabetes UK to address gaps in its current portfolio. The areas identified so far cover a wide range of interests, including comparing different models of GP care in England, the effectiveness of self-care and self-management, and research to determine the barriers to engagement in diabetes services, particularly for vulnerable groups.

Another priority area covers research to look at the perception of weight and its link to the development of diabetes. Finally, the group has asked us for investigation into new biomarkers for diabetic complications and mechanisms of hypo-unawareness.

There are several other areas considered on hold for the time being that we fully expect to revisit in the months ahead. Now, we are moving ahead with the priority areas and look forward to identifying and launching funding calls for research proposals later this year.

i To read the full strategy, visit www.diabetes.org.uk/research_strategy.

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Talking clinic | patient F

Monogenic diabetes Monogenic diabetes accounts for as much as 1–2 per cent of cases of diabetes in the UK, and misdiagnosis as either Type 1 or Type 2 diabetes is common. In recent years, however, significant advances have been made in accurately diagnosing and treating the condition, with enormous benefits for patients

M

s F was originally diagnosed with ‘Type 1’ diabetes at the age of 15. Ten years later, following genetic testing, she was found to have monogenic diabetes.

As a consequence, she has stopped insulin and is successfully managed on low-dose Gliclazide.

Andrea Biddulph, Diabetes Specialist Nurse, has now reviewed and discussed Ms F’s case with Dr Maggie Shepherd, a Senior Research Fellow at the Royal Devon and Exeter NHS Trust, who has been working with families with monogenic diabetes for the last 15 years and co-ordinates the national Genetic Diabetes Nurse project.

AB: Ms F’s case has surprised me and got me wondering whether we have similar cases of people with monogenic diabetes who are taking insulin unnecessarily. Can you tell me a little more about monogenic diabetes?

MS: Monogenic diabetes is caused by a change in a single gene that may be inherited from an affected parent.

Changes in different genes cause different types of maturity onset diabetes of the young (MODY), most of them caused by a change in the genes HNF1A, HNF4A, GCK or HNF1B. AB: Ms F was diagnosed with Type 1 when she was 15.

She presented with thirst, frequency passing urine and a blood glucose of 21mmol/l. It was assumed she had Type 1 diabetes and she was commenced on a basal bolus regime of Novorapid and Glargine. Are there any features that should have suggested the need to look for a genetic cause?

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MS: The three key features that characterise MODY are: an autosomal dominant family history (where a change in a single gene that causes disease – in this case diabetes – is passed down from an affected parent to their child): young age of diagnosis (under 25 in at least one family member); and evidence of non-insulin-dependent diabetes. Does Ms F have a family history of diabetes?

AB: Her mother was diagnosed with diabetes at 25 and has since been treated with insulin. Her maternal grandfather had diabetes diagnosed at 40, was treated with metformin and had diabetic retinopathy.

MS: The family history – diabetes passed down from an affected parent and often traceable back through three or more generations – is very typical and would certainly suggest the possibility of monogenic diabetes in a young person.

In conversation Dr Maggie Shepherd PhD trained as a registered general nurse and is now Honorary Clinical Senior Lecturer at the Peninsula Medical School and Royal Devon and Exeter Hospital, and lead co-ordinator of the national Genetic Diabetes Nurse project. She also has qualifications in medical education and genetic counselling, has published widely and is on the editorial board of the European Diabetes Nursing Journal.

She delivered the Janet Kinson award lecture at Diabetes UK in 2003, was a member of the team receiving the Queens Anniversary Prize for Higher and Further Education in 2006 and the Hospital Doctor Academic Medicine Team of the Year 2005.

AB: How common is monogenic diabetes?

MS: It is thought to be the cause of as much as 1–2 per cent of diabetes in the UK, ie 20,000–40,000 cases.

AB: We know that some families in our area have proven monogenic diabetes, but if the 1–2 per cent figure is right, shouldn’t we have many more cases?

MS: Unfortunately, misdiagnosis is very common and monogenic diabetes is initially misdiagnosed as either Type 1 or Type 2 diabetes in approximately 90 per cent of cases. Type 1 misdiagnosis is common, because the diabetes presents in slim adolescents or young adults, while the family history, or its significance, often goes unrecognised. Family members diagnosed with diabetes at an older age, and those overweight or obese, may be misdiagnosed with Type 2 for the same reason. Awareness of monogenic diabetes is increasing, but there are still many cases where the diagnosis is neither questioned nor confirmed.

Andrea Biddulph, Community Diabetes Specialist Nurse, Nottingham, works in education, both in groups and one to one, for people with diabetes and healthcare professionals. She also supports healthcare professionals to manage their Type 2 diabetes patients’ care closer to home, which involves joint clinic work with community healthcare professionals. She is the Nottingham Year of Care Champion, has recently achieved a qualification in supplementary and independent nurse prescribing and is working towards a degree.

MS: Ms F has HNF1A, the commonest cause of MODY, which typically presents in slim adolescents. This is best treated by low-dose sulphonylureas, rather than insulin. Ms F has successfully stopped her insulin and switched to Gliclazide 40mg twice daily, with an improvement in glycaemic control and quality of life.

Her most recent HbA1c was 54mmol/mol (7.1 per cent), down from 64–75mmol/mol (8–9 per cent) on insulin.

brought up to believe they need insulin to survive.

They feel anxious, but excited, about the possibility of change. During this transition, they need support and reassurance from professionals with experience in transferring patients with monogenic diabetes from long-term insulin to low-dose sulphonylureas.

This can be unsettling for patients and, often, the diabetes team, who may be unfamiliar with monogenic diabetes and its treatment. The genetic diabetes nurses across the UK are happy to liaise with diabetes teams and support these patients. They can also give presentations about monogenic diabetes and genetic testing to healthcare professionals to raise awareness and confidence about recognising and treating it.

AB: Ms F is delighted now but was originally quite nervous about stopping insulin. Is that common?

AB: What impact does this diagnosis have on other family members?

MS: Many patients with monogenic diabetes, previously considered to have Type 1, find it hard to believe they can transfer to tablets, having been

MS: Identifying HNF1A MODY in Ms F means that each of her children has a 50 per cent risk of inheriting the same genetic difference, so the family was offered

AB: What difference does confirming a monogenic cause of diabetes make to someone?

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Key points • Monogenic diabetes is often misdiagnosed as Type 1 diabetes, as it presents in slim young adults.

• Molecular genetic testing is crucial in confirming the specific diagnosis.

• Many patients with monogenic diabetes have successfully transferred from insulin to sulphonylurea tablets, with improvements in glycaemic control and quality of life.

• The recognition of monogenic diabetes has implications for the management of other family members and enables discussion of the risk of developing diabetes.

genetic testing. Following discussions with the local clinical genetics service and the local genetic diabetes nurse, Ms F and her husband decided not to proceed with testing for their children, as they were only two and four years old, but to monitor their urine annually for glycosuria and, if positive, ensure appropriate follow-up.

Ms F’s mother had a diagnostic genetic test confirming that she too had HNF1A MODY. However, having discussed possible treatment change, she decided to remain on insulin – partly because she has been on it so long, she’s happy to, and partly because the long duration of her diabetes make successfully transferring to sulphonylureas less likely, as HNF1A is characterised by progressive beta cell dysfunction.

Ms F’s brother had an oral glucose tolerance test, which was normal (fasting blood glucose, 4.6mmol/l; two-hour, 6.0mmol/l). Following counselling with his local genetic diabetes nurse, a predictive genetic test indicated he had not inherited the difference in HNF1A and so he was not at increased risk of developing diabetes.

AB: Tell me more about the different genes that can cause MODY? MS: It is important to confirm the specific type of MODY by genetic testing, as they require different management. HNF1A and HNF4A have similar features and are characterised by sensitivity to low-dose sulphonylureas – the first treatment of choice – and also a low renal threshold for glucose.

HNF4A is also a cause of macrosomia and neonatal hypoglycaemia, even when it is the father who is affected, and so requires specialised management.

GCK is characterised by mild and stable hyperglycaemia with fasting blood glucose values typically 5.5–8mmol/l, HbA1c below 58mmol/mol (7.5 per cent) and a tendency to marked hyperglycaemia.

Importantly, they do not need treatment for raised blood glucose levels and are at low risk of developing complications. It is obviously essential that patients and their healthcare professionals understand this.

20 | Diabetes Update | Spring 2011

HNF1B is typically characterised by renal cysts and diabetes, although other renal developmental abnormalities are often seen, as well as uterine abnormalities. Patients with HNF1B MODY usually require insulin.

AB: I see that it is important to recognise if someone has monogenic diabetes, and to clarify the specific type, and that there are lots of undiagnosed cases.

How can we address this?

MS: The key is to think about each diagnosis – not just in new cases, but also in people with established diabetes. Unless you are considering monogenic diabetes, you will never be able to pick out the people who may need further testing.

AB: That’s how Ms F was picked up. A different member of the team saw her and Ms F was talking about how her diabetes was affecting her, and her mum and granddad’s experiences, and – having previously heard a talk about monogenic diabetes – something suddenly clicked.

MS: That’s a very common story – being aware of the importance of family history, age of diagnosis and the relevance of non-insulin dependence (or insulin production in those on insulin from diagnosis), and suddenly it becomes quite clear. Equally common is the patient, having read something about genetic forms of diabetes, posing the question to their diabetes team.

AB: In clinic next week, what sort of thing should raise suspicion of monogenic diabetes?

MS: It really isn’t as complicated as some people think.

I recommend that any patient diagnosed under the age of 25, with a parent with diabetes, should be assessed to ensure appropriate diagnosis.

Next, make sure you have a detailed family history, looking for autosomal dominant inheritance. In a very small number of cases, it may appear that neither parent is affected, but this could be because the parents haven’t been tested for diabetes (particularly common in GCK families, where the hyperglycaemia is mild); the gene difference being spontaneous and this, therefore, being the first case in the family (although again this is very rare); or it could be a case of non-paternity.

Although family history is extremely important, all other clinical features should also be considered.

Ms F also admits that she sometimes omitted her insulin and that it never seemed to affect her diabetes control, even though she’d had diabetes for many years. This could also raise suspicion.

AB: If we suspect monogenic diabetes, what tests should we organise?

MS: Ultimately, there are genetic tests, but first there are a number of non-genetic tests that can also be extremely helpful.

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Although some people consider genetic testing to be expensive, it’s considerably cheaper than a lifetime of insulin

Measurement of pancreatic antibodies at or soon after diagnosis is helpful in confirming an autoimmune cause of diabetes, ie Type 1. These are present in approximately 80 per cent of cases of Type 1. We test glutamic acid decarboxylase (GAD) and insulin antibodies (IA2). Islet cell antibodies (ICA) are considered less reliable, so we don’t recommend them.

nurse, who can advise which patients are appropriate for genetic testing and on the implications for other family members.

AB: We measured GAD and IA2 in Ms F, but they were negative.

AB: How much does genetic testing cost and how can I arrange a test?

MS: Antibodies may be present a number of years after diagnosis but do decline over time. If they are still positive, it helps to confirm a diagnosis of Type 1.

However, a negative result could either support a non-autoimmune cause of diabetes or simply be negative in someone with Type 1 due to the duration of the condition.

Antibody testing at diagnosis, though common among some paediatric teams, is not routinely performed throughout the UK. Personally, I feel that GAD and IA2 antibodies should be checked at diagnosis in all individuals diagnosed before the age of 25. Not only would this confirm a diagnosis of Type 1 in the majority of cases, but it would also highlight those patients who are antibody negative at diagnosis and worthy of further investigation.

Another possible test is c-peptide measurement.

C-peptide is a measure of insulin production. If still measurable after five years or more post diagnosis, it can establish whether someone is still making insulin, which would be highly unusual in a case of longstanding Type 1. Urinary c-peptide creatinine ratio (UCPCR) can be measured easily, with patients posting a urine sample taken two hours after a meal to the Exeter team (see ‘information’, page 21).

Levels of less than or equal to 0.2nmol/mmol indicate insulin deficiency, which would be expected in longstanding Type 1.

In Ms F’s case, her UCPCR measurement was 1.2nmol/mmol, indicating she was producing insulin of her own 10 years post diagnosis – not unusual in monogenic diabetes but highly atypical in Type 1.

MS: It costs £350 per gene for the first family member, because we have to sequence the whole gene to look for a difference. The cost for subsequent family members, once a difference has been identified, is £100.

AB: So, who should then go on to have genetic tests?

MS: Use of non-genetic tests such as UCPCR and GAD and IA2 antibodies can be invaluable in aiding differential diagnosis prior to considering genetic testing. If the tests suggest Type 1, genetic testing isn’t necessary. Otherwise, a patient fitting the clinical criteria should be offered genetic testing.

If the patient has diabetes, the local diabetes specialist nurse can explain that the genetic test is to try to identify whether their diabetes has a specific genetic cause. However, as this can have implications for the patient’s treatment, and the management of other family members, it is helpful to discuss cases with the Exeter team or the regional genetic diabetes

AB: How can diagnosis be improved to avoid other patients being misdiagnosed?

MS: Although some people consider genetic testing to be expensive, it’s considerably cheaper than a lifetime of insulin and the other costs associated with managing Type 1 diabetes. So, I would reiterate my suggestion that genetic testing should be offered to individuals whose clinical characteristics meet MODY criteria: diabetes diagnosed before the age of 25 in at least one family member; autosomal dominant inheritance; and non-insulin dependent diabetes, which may be indicated by a positive UCPCR result more than five years post diagnosis.

Thanks to Simon Eaton, Consultant Diabetologist, Northumbria, for co-ordinating this issue’s Talking clinic.

i For full details on monogenic diabetes, including posting samples for testing, contacting genetic diabetes nurses and discussing patient cases, visit www.diabetesgenes.org.

Further reading 1 Stride A and Hattersley AT (2002). Different genes, different diabetes: lessons from maturity onset diabetes of the young. Annals of Medicine 34; 207–16 2 Pearson ER, Starkey BJ, Powell RJ, Gribble FM, Clark PM and Hattersley AT (2003). Genetic cause of hyperglycaemia and response to treatment in diabetes. Lancet 362; 1275–81 3 Shepherd M, Shields B, Ellard S, Rubio-Cabezas O and Hattersley AT (2009). A genetic diagnosis of HNF1A diabetes alters treatment and improves glycaemic control in the majority of insulin treated patients. Diabetic Medicine 26; 437–41 For additional further reading references, visit www.diabetes.org.uk/pmupdate12.

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Come on in As the NHS braces itself for unprecedented upheaval, involving people in improving their diabetes care has never been more vital. David Jones, User Involvement Manager, Diabetes UK, reports on the timely launch of Making Involvement Happen on the charity’s website

I

nvolving people in decisions about the care that they receive is nothing new. For many years in the UK, government policy has placed great emphasis on engagement, involvement and consultation. The right to be involved is even enshrined in the NHS Constitution, and all recent major health initiatives, such as the White Paper Equity and Excellence: Liberating the NHS (2010) and the Quality, Innovation, Productivity and Prevention (QIPP) programme, have made a big noise about the importance of patient involvement to the successful delivery of quality care.

The changes under way in the health service will, it is claimed, lead to an NHS that does “nothing about us without us”. In a speech to the NHS Confederation Conference in June 2010, Health Secretary Andrew Lansley said: “Patients must be at the heart of everything we do, not just as beneficiaries of care, but as participants in its design. We must see the NHS through their eyes – their experience, their outcomes – and make delivering what they want a shared experience and responsibility.”

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Diabetes UK’s User Involvement team has found that most of the people they talk to who work in the NHS accept the need for good involvement. They see the potential benefits of understanding better people’s needs and experiences, and the opportunity this presents to improve services. However, as Adrian Mayers, Lead Commissioner for Long-Term Conditions, NHS Hammersmith and Fulham, said: “How can we make user involvement part of our day-to-day business rather than it being out there on its own, and only doing it when we have to, as part of a consultation?”

In other words, does knowing what should happen mean that it actually does? Are patients routinely involved in service design? Do they have a clear role in commissioning processes? Are their experiences regularly gathered and, more importantly, used to influence decisions throughout the whole system?

The answer, sadly, seems to be no. Or, as involved service user Lee Nevitt from Bournemouth succinctly put it: “Sometimes, to be honest with you, it’s a tickbox situation. They listen to you at the time, but you just don’t get the feedback.”

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Excellence an exception That said, there are some excellent examples of user involvement in parts of the NHS. At Diabetes UK, we have witnessed highly committed staff and people with diabetes working to ensure services do deliver.

Sadly, however, these are the exception, not the rule.

The 2009 Healthcare Commission report, Listening, Learning, Working Together?, found ‘limited evidence that trusts used people’s views as a matter of course to plan services, or that they routinely used them to improve the delivery of services’. There are many concerns about user involvement in the new commissioning arrangements arising out of Equity and Excellence. As Barbara Young, Chief Executive, Diabetes UK, told the BBC’s Today programme on 8 February 2011: “The GP consortia don’t…in their statutory framework have a requirement to be absolutely clear about bringing patients right into the decision-making about their care.” So, despite the policy rhetoric, we don’t have a routine commitment to systematic and meaningful involvement across diabetes care. Why not?

Several common factors always come up: lack of support from senior NHS managers; lack of resources – money and appropriately skilled staff; other work taking higher priority; fear of getting it wrong; fear of only getting the ‘usual suspects’, ie the people with single issues and those who are involved in everything; there being no sanctions for not actually involving users; fear of what people will ask for; and fear of loss of control, and so on. It may also be that patients and patient organisations have not made a loud enough noise about the need to make involvement happen.

“Some of the scepticism is because people’s experience of user involvement has been poor.

You can make anyone’s involvement token and unrepresentative. User involvement is absolutely vital, it’s really helpful, but equally it has to be done properly,” Dr Stephen Thomas, Healthcare for London Lead Clinician, told Update.

HealthWatch England, the new national ‘consumer health champion body’, which will sit within the Care Quality Commission, will take over from existing Local Spring 2011 | Diabetes Update | 23

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Some HealthWatch organisations will, no doubt, do very good work, just as some local LINks have done. But it won’t be enough

Involvement Networks (LINks) by April 2012. Like LINks, however, HealthWatch is unlikely to offer a way for more people to get involved, meaningfully, in diabetes care. Some HealthWatch organisations will, no doubt, do very good work, just as some local LINks have done. But it won’t be enough. There needs to be a firm commitment, by all GP Commissioning consortia and everyone involved in commissioning, designing and delivering diabetes services, to engage, inform and involve people with diabetes, so that services deliver what they need.

So is there any hope? The simple answer is – yes.

Yes, it is possible to involve people in meaningful dialogue about the care they receive, but it involves commitment, hard work and resources. There are a number of things you, as diabetes healthcare professionals, can do to make sure that people are involved in decisions in your organisation or service.

Joint working Diabetes UK has worked with NHS Hammersmith and Fulham, NHS Lincolnshire and North Mersey Diabetes Network to establish systematic, structured involvement in decisions about local diabetes care as part of a project funded by NHS Diabetes. The project, the User Involvement in Local Diabetes Care Project, developed approaches that reflected the real context in the three diverse settings: one in inner-city London, one rural county and one mixed area made up of three primary care trusts (PCTs).

In each area, the project team worked with a local co-ordinator to establish a user group in each setting that would influence the commissioning of diabetes care and be broadly representative of the diversity of the local diabetes population. This built on previous collaborative work with a number of NHS organisations to engage diverse groups of people with diabetes with the organisations that serve them.

“The user groups made us think about what we’re doing, and it’s very different to how commissioners 24 | Diabetes Update | Spring 2011

commission healthcare, and that’s something that’s had a lot of positive feedback within the PCT,” said Adrian Mayers.

Involvement online From this work, we have learned some key lessons about what makes involvement work and what gets in the way, and have developed Making Involvement Happen for the charity’s website (see ‘information’, page 26), which we hope will help those trying to set up and run user involvement groups. The web pages cover the key stages necessary to making involvement work, a range of practical tips and resources, and some practical examples from experience.

As an introduction to Making Involvement Happen, here are some top tips to get you started: Getting your organisation ready “You need time and genuine commitment if you are going to do the work justice.” Shona Brewster, Diabetes Project Manager, NHS Lincolnshire You need to get your organisation (service or team) ready for user involvement before you start planning.

If you don’t, you might find it difficult to make changes happen. Here is a quick checklist: • Check someone hasn’t done the work already.

• Make sure you have senior support for the work.

• Agree the purpose of the work and what you want to achieve.

• Make sure you have enough money to support the work.

• Try to find someone in the organisation who can help you to recruit people and facilitate involvement.

• Be clear about the decision-making structures that will use the information gathered.

Planning for involvement “They’ve actually challenged our thinking throughout the whole process in terms of targeting resources.”

Adrian Mayers, Lead Commissioner for Long-Term Conditions, NHS Hammersmith and Fulham When your organisation is ready to involve users, you will need to plan thoroughly. This is your opportunity to deal with common problems before they arise. In reality, of course, new problems will pop up, but that’s life. Our experience tells us that you need to: • Estimate accurately the time involved – because co-ordinating is time-consuming for the people who do it.

• Be clear who you need to engage to achieve your objectives • Identify how you will involve people – does the involvement need to be ongoing or is it a one-off?

Do you want to have a standing group or a series of engagement events?

• Plan how you will recruit people to take part.

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• Plan how you will communicate with participants and the wider diabetes community.

• Define roles and responsibilities for staff and participants.

• Plan how you will evaluate the work.

Implementing “It is incredibly rewarding to see the empowering effect of being involved on the people who take part.”

Jackie Rooney, North Mersey Diabetes Network Manager Now the easy bit is over, it’s time to do the real work.

What you do will depend on the type of involvement you have opted for. You can: • Recruit the people you need and make sure they are clear what is expected of them.

• Make sure you hear from all relevant voices, not just the people who come forward – you will have to do extra work to get some groups engaged.

• Make sure you communicate with the participants regularly – to prevent problems arising and to allow users to see the impact of their input.

• Establish clear links between the user voice and decision-making – preferably by having people represent the wider group on decisionmaking bodies.

• Run your involvement activities efficiently and think about how to facilitate the discussion – poorly run events put people off.

• Ask the service users questions you want answers to, but remember to translate them into plain language for non-NHS people.

• Get help from your colleagues, community organisations or external agencies, if you need it.

• Keep your colleagues and senior staff engaged – provide them with information and let them hear from the people you are involving.

• Regularly review how things are going and make changes as needed.

Remember, there will be problems along the way, people will give you headaches and you will feel like it is all too much trouble, but stick with it – it will be worth it in the end.

Evaluating “Involvement is a bit like a wedding – it’s easy to focus on the wedding day but the hard work comes in maintaining the marriage.

With involvement, it is easy to focus on getting people together and setting things up, but it is the ongoing dialogue that makes a difference.” Christine Mead, NHS Hammersmith and Fulham, Self-Care Programme Manager for Long-Term Conditions You will need to know if the work has been delivered effectively and if it has had any impact on diabetes care in your 26 | Diabetes Update | Spring 2011

A promotional flyer for Diabetes UK’s Making Involvement Happen initiative

Happen Making Involvemesent to improve diabetes care How to involve people with diabet

organisation, service or team. If you have access to expert staff, you may be able to do a thorough evaluation. If you don’t, there are a few basic things you can do: • When you are planning the activity, think about what success will look like, eg what improvement you would like to see or the information you would like to capture.

• Agree what information you want to capture for reporting.

• Make sure you have ways to capture and record the information you need, such as evaluation forms or online surveys.

• Think about the reports you need to produce.

• Ask the participants and your colleagues what they think.

• Review at an agreed point.

Remember, good involvement does not need to be complicated or expensive. You do, however, need to be fully committed and willing to work through some of the more challenging aspects. As Barry Gibbins, involved carer from Hammersmith and Fulham, told Update: “The message to health organisations is clear. Your users can tell you some very simple things that wouldn’t necessarily have been considered or properly evaluated in the decisionmaking process. There are some very small and subtle improvements that, when brought into play, provide huge added value.”

And the message to people with diabetes? Once again, Lee Nevitt put it succinctly: “This is your diabetes, this is your NHS. Have your say. If you want to change it, you can.”

i To find out more about making user involvement happen in your organisation, visit www.diabetes.org.uk/ MakingInvolvementHappen.

• NHS organisations looking for help to to develop userinvolvement approaches can contact Diabetes UK’s User Involvement team by email at user.involvement@ diabetes.org.uk or by calling 020 7424 1008.

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eyes have it Trends suggest that diabetic retinopathy is on the decrease.

But are we any closer to finding a cure? Dr Eleanor Kennedy reports on advances in understanding this complex condition and, more importantly, treating it

D

iabetic retinopathy is arguably one of the most feared of all diabetes-related complications. It occurs when the blood vessels in the retina at the back of the eye become leaky and eventually close, failing to deliver blood to the retina. In some cases, diabetic retinopathy can also lead to an uncontrolled growth of blood vessels on the top of the retina that can lead to vision loss. Despite encouraging progress in the prevention of retinopathy through increased awareness and education, diabetes remains the leading cause of blindness in people of working age in the UK. Spring 2011 | Diabetes Update | 27

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Moreover, people with diabetes are 10–20 times more likely to lose their sight than people without diabetes, and the number of people likely to become registered blind because of diabetic retinopathy is more than 1,200 this year alone.

Dominated by the landmark studies, the Diabetes Complications and Control Trial in people with Type 1 diabetes and the UK Prospective Diabetes Study in Type 2 diabetes, clinical trials have repeatedly shown that tight blood glucose control can have profound benefits on the incidence and severity of diabetic complications, including retinopathy.

“We’re now beginning to witness trends that suggest a decreasing prevalence of diabetic retinopathy over time,” says Professor Ronald Klein from the Department of Ophthalmology and Visual Sciences at the University of Wisconsin. “Technology, such as digital imaging of the retina at the back of the eye, is improving and gaining more widespread use, so we’re detecting the condition earlier. And with messages about tight glycaemic control and improved blood pressure filtering through to our patients, management practices are getting better.” That said, he acknowledges there is room for improvement. “There remains some disparity between white and other population groups. Black and minority ethnic communities have higher rates of diabetic retinopathy. In black populations this seems to be due to poorer control of blood glucose and blood pressure than in white communities. It isn’t the case, though, for example, in Hispanic populations, for reasons that are not at all clear.”

In England, the number of cases of sight-threatening diabetic retinopathy has declined thanks to better management and, in part, to the National Service Framework for Diabetes : Delivery Strategy (NSF 2003), which states that people with diabetes should receive regular surveillance for diabetic retinopathy. Early laser treatment for those identified as having sightthreatening retinopathy can reduce the incidence of new visual impairment and blindness in this population.

The NSF’s aim was ambitious: ‘by 2006, a minimum of 80 per cent of people with diabetes [are to] be offered screening for the early detection (and treatment if needed) of diabetic retinopathy as part of a systematic programme that meets national standards, rising to 100% coverage of those at risk of retinopathy by end 2007.’

Dr Peter Scanlon, Director of the English National Screening Programme for Diabetic Retinopathy, thinks that its success rests on the development of a systematic, population-wide screening programme that allows healthcare professionals to identify disease much more quickly. “Cases of advanced diabetic retinopathy are being picked up more effectively, and surgeons are now dealing with fewer numbers of patients,” he says, “but it’s more difficult to prove whether this earlier detection ultimately prevents visual loss, because blindness registers are incomplete, so we haven’t quite closed the loop in that respect.”

28 | Diabetes Update | Spring 2011

Jacopin (bottom), Dr Tim Evans (top) / SPL

Epidemiology

TOP: Computer model showing the structure of vascular endothelial growth factor (VEGF). BOTTOM: Representation of intravitreal injection to prevent macular degeneration

Advances in treatment Aside from its epidemiology and screening for the condition, clinical treatments for diabetic retinopathy continue to advance. Following the disappointing results from the protein kinase B inhibitor trials – hailed as the great new hope for diabetic retinopathy in 2005 – emphasis has shifted towards the raft of vascular endothelial growth factor (VEGF) inhibitors flooding the market. Known as anti-VEGFs, these molecules inhibit the action of VEGF, which is important in the development and maintenance of blood vessels around the body, but can cause abnormal growth in retinal blood vessels when present in abnormal levels in diabetes.

“Laser treatment – in which tiny laser beams are used to destroy damaged parts of the retina, stopping the growth of new abnormal blood vessels and preventing any further damage to vision – remains the first line of defence for proliferative diabetic retinopathy and for maculopathies, a class of conditions affecting the area at the centre of the retina,” says Dr Scanlon. “But antiVEGF drugs are demonstrating good short-term results in trials in other related disorders such as macular oedema, so it’s likely that they’ll soon be entering into mainstream care pathways for diabetic retinopathy.”

The obvious drawback with anti-VEGF treatments is in its delivery. Intravitreal injection – injection into the eye every few weeks – may not be ideal for everyone.

And, while other clinical trials are under way in diabetic retinopathy, they’re notoriously difficult to conduct because they need to run for around five to 10 years to look at the endpoints appropriately. Meanwhile, efforts to improve the technologies available for retinopathy detection are gathering momentum.

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Optical coherence tomography is now routinely used in the clinic to observe minute changes at the back of the eye, picking up thickening, at a micrometer level, of the macula, at the centre of the retina. And it doesn’t stop there. Hyperspectral imaging techniques are improving all the time and can be used to detect oxygen levels in the retina that indicate the metabolic activity occurring there.

Interestingly, research using this piece of kit is yielding some unexpected results. For example, it was thought that a lot of deoxygenated blood would be detected across the retina in cases of proliferative diabetic retinopathy. In fact, little is found, indicating that blood might be getting shunted away from the site of vascular damage.

Complex mechanism, complex disease For many years diabetic retinopathy has been viewed simply as a disease of the blood vessels. “Actually, that central dogma is now being challenged,” says Professor Tim Kern, Director of the Centre for Diabetes Research at Case Western Reserve University in Cleveland, Ohio. “From a clinical trials point of view, we always defined retinopathy by vascular endpoints, but there is now data to suggest that it also has a neurological component. And, if we go back a few years and look at some of the older trials using aspirin, there is data to suggest that retinopathy may have an inflammatory dimension too.”

Clinical trials have investigated this possibility but the results have been conflicting. In the seminal Early Treatment of Diabetic Retinopathy Study, 650mg a day of aspirin did not inhibit diabetic retinopathy in patients with either non-proliferative diabetic retinopathy or early proliferative retinopathy.

However, a subsequent study demonstrated that aspirin did have a partial beneficial effect on preventing the progression of the disease.

That said, Prof Kern urges caution when it comes to interpreting these results. “Neither trial was conducted using an anti-inflammatory dose of aspirin. Animal studies have provided evidence that anti-inflammatory drugs can inhibit at least the early stage of retinopathy, and other clinical trials are now under way that will give us more insight into the possible role of salicylates [aspirin-like compounds] in inhibiting insulin resistance.

This is critical in the development of Type 2 diabetes, and a substudy of this trial will be looking at diabetic retinopathy. So, while the salicylate trial is not focused on diabetic retinopathy, it may give us important insights into the possible role these compounds play in the retinopathy process. We await the results of these studies with some interest.”

Like the inflammatory component of diabetic retinopathy, the possible neurological component of the condition is yet to be fully defined. Recently, a group in the Netherlands used optical coherence tomography to demonstrate significant thinning of the retinal nerve fibre layer in patients with Type 1 diabetes compared to those without the condition.

Spring 2011 | Diabetes Update | 29

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The authors suggest that these results support the concept that diabetes has an early neurodegenerative effect on the retina, which occurs before the onset of vascular damage.

Professor Alan Stitt at Queen’s University Belfast is wary, however, of over-interpreting this data. “The work on diabetic retinopathy as a neuropathy in the early stages remains quite controversial. While there is clearly dysfunction, the progressive death of retinal neurons just doesn’t fit neatly into the clinical scenario in the early years of diabetes. It’s now understood that vascular damage does not occur in isolation from the rest of the retinal cells. Researchers recognise the need to focus on the entire retina and understand fully how the various cells in this complex tissue interact with each other and, importantly, become dysfunctional as diabetes progresses.”

Diabetes UK is funding a PhD studentship in Prof Stitt’s laboratory to look at the role of erythropoietin in diabetic retinopathy. Normally recognised for its role in the production of red blood cells, this hormone is also a key player in preventing both cell death and excessive

Genetics, usually at the root of most research of this kind, has drawn a spectacular blank blood vessel growth. For this reason, it plays an important tissue-protective role in stroke patients.

But could it also play a part in preventing harmful blood vessel re-growth at the back of the eye?

“Well, it’s not quite that simple,” says Prof Stitt.

“If you just give erythropoietin to a patient, you stimulate the production of red blood cells, so we need to use engineered erythropoietin that still has a tissueprotective role but no effect on red blood cell count.

Early results in animal models are encouraging. We’ve witnessed a significant slowing of the progression of the disease in animals with established diabetic retinopathy treated with these engineered erythropoietins.” In fact, the entire vascular pathology changes, so the big question now is: are the molecules actually affecting vascular stem cells?

All the RAGE The haemoglobin A1c (HbA1c) test that diabetologists use as an indicator for long-term blood glucose control measures glycation, in which glucose molecules bind to proteins in red blood cells. Related to this process is the formation and accumulation of chemical by-products of the glycation process called advanced glycation end products (AGEs), which form at a constant, but slow, rate in the body. A lowered blood glucose concentration will slow down the accumulation of AGEs, but persistently high levels will cause excessive damage to the protein structures and function. AGEs are found in the retinal vessels and other retinal cells of people with diabetes, and 30 | Diabetes Update | Spring 2011

their levels correlate with severity of retinopathy.

Increases in the receptors for AGEs – RAGEs – as a result of inflammation further support the possible role of inflammation as a cause of retinopathy.

A spectacular blank The research doesn’t end there. “Another area of huge importance is the field of biomarkers – early predictors of diabetic retinopathy,” explains Prof Klein. Prof Kern agrees: “There is a lot of interest in the possibility of a serum biomarker that predicts who is at risk of developing the most severe forms of retinopathy.”

Until that day, one very real possibility generating interest centres on changes in the appearance of the retina during an eye examination. The diameters of both the arteries and small veins of the retinal vessels appear to change in diabetic retinopathy. In a recent study of African Americans with Type 1 diabetes, researchers showed that the diameter of larger retinal veins is significantly widened and could be an independent and early indicator of progression to proliferative diabetic retinopathy.

Genetics, usually at the root of most research of this kind, has drawn a spectacular blank with regards to explaining why some patients develop advanced retinopathy while others do not. While genes have been found to cause diabetic retinopathy in some animal models, this has not been found consistently in people with diabetes. It should be noted, however, that the studies in animals have not looked at advanced diabetic retinopathy, due to the short duration of diabetes studied.

“The candidate gene approach is not really a productive avenue for researchers to explore because it is likely that, if there is a genetic predisposition, it’ll be polygenic, with lots of small-effect mutations in less common gene variations,” says Prof Stitt.

“Some genome-wide scans are now taking place internationally as part of clinical trials, but the results are not yet available.”

A cure in sight?

So, researchers around the globe are busily making impressive inroads in our understanding of the condition, from the molecular to the populationbased level. But are we any closer to finding a cure for diabetic retinopathy? “Little pieces of the jigsaw are being fitted every day,” says Prof Klein, “but it’s unlikely that there is a ‘big bang theory’ waiting in the wings to change the way we look at diabetic retinopathy.” Prof Klein concludes: “It’s true that we’re improving our knowledge of retinopathy at all levels, but we can’t take our eye off the ball here. Our emphasis needs to be on lowering the burden of the disease, for patients and society. Right now, managing blood glucose, blood pressure and blood lipid profiles looks to be the best way forward.”

For a referenced version of this article, visit www.diabetes.org.uk/pmupdate12

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The Official Journal of Diabetes UK One of the leading clinical diabetes journals in the world Remember reduced subscription rates are available for professional members of Diabetes UK! Subscribe now to enjoy… t Content: Publishing the latest clinical research and practice information on diabetes t Quick and easy access: Key articles highlighted on the front cover, and table of contents featured on the front page t Readability: Colour-coded sections throughout the journal make articles easier to find and read t Quality: Current Impact Factor: 2.871* t Demand: Available online – article downloads increasing year on year

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National diabetes audit The verdict? Steady progress overall, with room for improvement still. Dr Bob Young summarises the findings and looks forward to the 2011 audit, including Diabetes UK’s pivotal role

T

he National Diabetes Audit (NDA), which started in 2003–04, includes both children and adults with diabetes. Participation has grown steadily from 20 per cent of people with diabetes in 2003–04 to more than 80 per cent in 2009–10. Until now the audit has focussed on four foundation questions: • Is everyone with diabetes diagnosed and recorded on a practice diabetes register?

• Because unless they are diagnosed and recorded (registered), people with diabetes are not offered services.

• What proportions of people with diabetes receive the key processes of core continuing diabetes care 32 | Diabetes Update | Spring 2011

2010

to National Institute for Health and Clinical Excellence (NICE) and National Service Framework Standards (NSF) standards?

• Because annual examinations, blood tests and screening tests are essential to make treatment adjustments and stop early complications progressing to serious disease.

• What proportions of people with diabetes achieve the NICE and NSF specified treatment targets?

• Because lots of evidence shows that reaching these blood glucose, blood pressure and cholesterol level targets provides the best defence against the development of diabetic complications.

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Target achieved % 2003–04

Target achieved % 2006–07

Target achieved % 2008–09

Target achieved % 2004–05

Target achieved % 2007–08

Target achieved % 2009–10

Target achieved % 2005–06 70 60 % of 50 registered 40 patients 30 20 10

{ {

0

Type 1

Type 2

Figure 1: Increasing numbers of people with Type 1 (16 per cent increasing to 25 per cent) and Type 2 diabetes (36 per cent increasing to 60 per cent) in England achieving the NICE glucose control target (HbA1c under 7.5 per cent)

• For people with diabetes what is the annual rate of diabetic complications?

• Because measuring the amount of complications assesses the outcomes of diabetes and the effectiveness of all the lifelong care that has gone before.

These are all important questions relating to fundamental standards of diabetes care, and the 2010 audit results show that there has been steady progress overall, although more in Type 2 diabetes than in Type 1 (see Figure 1 above).

However, there is also considerable underlying variation between adjacent districts (see Figure 2 below). So the existing NDA shows that there is much still to improve. However, these foundation questions cover only some of the key components of diabetes care, as illustrated in Figure 3 (see page 34).

Care processes % of registered

NDA 2011–14 During 2010, the National Clinical Audit Advisory Group (NCAAG) approved a more ambitious programme of National Diabetes Audits, with a much wider scope that encompasses most of the components of diabetes care (see Figure 4, page 34).

There will now be two separate audits: the first for children only, and run by the Royal College of Paediatrics and Child Health; the second, the National Adult Diabetes Audit (NADA), will be run by a consortium of: • Diabetes UK, which will lead on governance and clinical engagement • the NHS Information Centre, which will be responsible for datasets, data collection, data management and information governance • Diabetes Health Intelligence, a part of the Yorkshire and Humber Public Health Observatory, University of York, which will lead on analysis and reporting.

SHA average

National average

80 % of 60 patients with all care processes 40 complete 20 0 Figure 2: 2008–09: variation in the percentage of patients completing all nine annual care processes between primary care trust areas in one Strategic Health Authority (SHA) region (best 60 per cent; worst 10 per cent)

Spring 2011 | Diabetes Update | 33

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An ‘episode’ of diabetes ‘the rest of life’ Other new complications

Non-diabetesrelated hospital admissions

= NDA1

New 2 CHD

Major life events

P R E V E N T I O N

1 Initial management

Diagnosis

Continuing care

HUB

New CVA

Major treatment change, eg starting insulin

EVENTS

Severe hypoglycaemia

2

New erectile dysfunction Pregnancy Institutional care

DKA 2 HONK

New New eye Foot proteinuria complication disease

2 SUB-PATHWAYS FOR EACH EVENT Always returning to continuing care Laying the foundations

Support and early detection

Reacting when things may/do go wrong

Figure 3: The ‘Tadpole Diagram’ from the NSF illustrates the relationship between all the components of diabetes care.

Until now, the NDA has covered only those circled in green

An ‘episode’ of diabetes ‘the rest of life’

5

+

P R E V E N T I O N

Other er new w complications complication ns

Non-diabetesrelated hospital admissions

= NDA2

New 2 CHD

Major life events

1 Initial management

Diagnosis

Continuing care

3 HUB

e Exp

rie

nc

f eo

Major treatment treatmen change, eg chan starting insulin st

New CVA EVENTS

Severe hypoglycaemia

New erectile dysfunction Pregnancy 4 Institutional care

DKA 2 HONK

e car

New New eye Foot 6 proteinuria complication disease

2 SUB-PATHWAYS FOR EACH EVENT Always returning to continuing care

Laying the foundations

Support and early detection

Reacting when things may/do go wrong

Figure 4: During 2011–14, the NDA will expand to include all the components of diabetes care circled in purple also

34 | Diabetes Update | Spring 2011

2

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NADA will start in April 2011, building up by stages to include: • Continuation of the core audit (see page 32) with an additional question: • What proportion of people registered with diabetes receive accredited structured education, have annual care planning and are given drug treatments in line with NICE guidance?

• A new National Diabetes Inpatient Audit, including the questions: • Did diabetes management minimise the risk of avoidable complications?

• Did harm result from the inpatient stay?

• Was patient experience of the inpatient stay favourable?

• A new Diabetes Patient Experience Audit, which should include a random 5 per cent sample of people with diabetes each year. The questions are: • Is communication at consultations effective?

• Does care planning take place as recommended?

• What are experiences of accessing care?

• How engaged in their care are people with diabetes?

• A new National Diabetes in Pregnancy Audit, including the questions: • Was the woman adequately prepared for pregnancy?

• Were foetal risks minimised during pregnancy?

• Were maternal risks minimised during pregnancy?

• A new National Diabetes Foot Care Audit addressing the questions: • Are the key structures in place for the prevention and management of diabetic foot disease?

• What proportion of patients classified as at low risk in routine surveillance develops diabetic foot disease?

• What proportion of patients classified as at increased risk in routine community surveillance and attending a Foot Care Protection Programme develops diabetic foot disease?

• What proportion of patients classified as at low risk on admission to hospital develops diabetic foot disease in hospital?

• What proportion of patients classified as at increased risk on admission to hospital develops diabetic foot disease in hospital?

• Are the outcomes of managing established diabetic foot disease optimised (time to heal, hospital admission, amputation and disability)?

Exciting times ahead This is, therefore, a very exciting time for the NDA. And because Diabetes UK will play a pivotal role in the delivery of the NDA, people with diabetes and the wide range of healthcare professionals involved in providing diabetes care will guide the development and interpretation of the audit. The Diabetes UK-led Spring 2011 | Diabetes Update | 35

By 2014, it is hoped that all diabetes care providers will achieve transparently accessible levels of care consortium will make it a priority to publish all key information about the delivery and quality of diabetes care as promptly and widely as possible. The consortium will also endeavour to make the results of the NDA accessible to, and easily understood by, all the key audiences: people with diabetes, the various providers of diabetes care, commissioners of diabetes care, regulators of diabetes care and health policy makers.

By 2014, it is hoped that all diabetes care providers will achieve transparently accessible levels of care, so that people with diabetes, healthcare professionals and those with responsibility for commissioning healthcare can all use reliable evidence to make choices, prioritise improvement programmes and allocate resources wisely.

Dr Bob Young, Consultant Diabetologist and Director of Clinical effectiveness at Salford Royal Hospital, is the Clinical Lead for the National Diabetes Information Service

i For more on the NDA, visit www.ic.nhs.uk/services/ national-clinical-audit-support-programme-ncasp/diabetes.

• See also ‘Care delivery’ on page 42 for a report on the National Diabetes Inpatient Audit 2010.

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Counting the cost Prescription costs for diabetes drugs now account for 6.9 per cent of the UK drug bill. In the throes of a deep economic recession, is this cost-effective care? Edwin Gale, Professor of Diabetic Medicine, University of Bristol, thinks not, and wonders too why prescribing practice pays no heed to NICE guidance

A

s the number of people with Type 2 diabetes continues to increase, UK health services are, in theory, meeting the challenge, principally by devolving diabetes management from specialist to primary care. This initiative has been guided by the introduction of national standards for diabetes through the various national service frameworks/plans and the introduction of financial incentives for primary care through the Quality and Outcomes Framework (QOF) for diabetes and other common chronic conditions in 2004. The National Institute for Health and Clinical Excellence (NICE) has also provided further guidance.

Having had, as yet, relatively little feedback on the impact of these policy changes at a population level, Diabetes UK commissioned a team in Cardiff to conduct a series of studies analysing various aspects of the health economics of diabetes care. The results were published in a series of four articles in succeeding editions of Diabetic Medicine.

Prevalence The first study, carried out in Cardiff and the Vale of Glamorgan, found that the adjusted prevalence of identified diabetes had increased from 2.3 per cent in 1996 to 3.4 per cent in 2005. The proportion of those with known diabetes and diabetes-related complications had fallen from half to around one-third. While this 36 | Diabetes Update | Spring 2011

increase is consistent with other studies, caution is needed before extrapolating the prevalence estimate to the rest of the UK, as the Yorkshire and Humber Public Health Observatory (YHPHO) has estimated an almost two-fold range in prevalence between health districts in the UK, affected by factors such as differences in age, ethnicity, obesity and social deprivation.

The observed rise in prevalence is likely to be accounted for by improved screening efficiency, longer survival and a true increase in the number of people affected. One Scottish study estimated that mortality among people with diabetes decreased by approximately 20 per cent over a 10-year period and accounted for 40 per cent of the increase in Type 2 diabetes in the same period; the remaining 60 per cent was attributable to rising incidence. The decrease in the proportion of people with known complications of diabetes in the Welsh study might, therefore, be due to a combination of better clinical management and an influx of recently diagnosed individuals. The report could not distinguish between these two possibilities.

The second study, conducted in the same health district, compared adjusted hospital inpatient costs for diabetes in 1994 and 2004 and found that these had increased from 8.7 to 12.3 per cent of total acute hospital expenditure. This increase largely mirrored the increasing prevalence of diabetes in the surrounding district.

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Value for money?

The third study showed that prescription costs for diabetes, at £702m per year (adjusted to 2008 prices), now represent 6.9 per cent of the UK drug bill. A 2007 YHPHO report supports this estimate and comments that ‘diabetes-related prescriptions...are now the highest single cost in the NHS prescribing budget’. England alone accounted for £591m in 2008, as against £290m in 2000, after adjustment for inflation, an increase largely driven by the cost of insulin: a rise from £128m (44 per cent of total expenditure) to £286m (48.4 per cent). Diagnostic reagents came next, accounting for £95m in 2000 and £139m in 2008, a fall from 32.8 to 23.6 per cent.

Glitazones accounted for 0.5 per cent of expenditure in 2000 and 13.2 per cent in 2007, falling back to 11.7 per cent in 2008 due to safety concerns around rosiglitazone.

Metformin accounted for 4.6 per cent of drug expenditure in 2000, as against 10.7 per cent in 2008, when it accounted for 52.8 per cent of all prescriptions, while glitazones represented only 2.8 per cent. Twenty people received metformin for the cost of one receiving a glitazone. The cost of insulin secretagogues, mainly sulphonylureas, fell from 16.2 per cent in 2000 to 3.7 per cent in 2008, while volume fell from approximately one-third to one-fifth in the same period. Prandial glucose regulators and acarbose, meanwhile, have almost vanished from circulation, and guar gum has reverted to its previous role as wallpaper paste.

Insulin dominates the diabetes drug bill. In England, it accounted for £286m of diabetes expenditure in 2007, £234m of which (82 per cent) was accounted for by insulin analogues. Opinions differ as to whether routine use of insulin analogues is justified in Type 2 diabetes; the heavyweight systematic reviews are unanimous that it is not, except, possibly, for the minority who experience troublesome symptomatic hypoglycaemia.

The cost for one quality-adjusted life year on insulin glargine, as compared with human insulin, has been estimated at approximately £400,000 for Type 2.

In 2008, the German Institute for Quality and Efficiency in Health Care, concluded that reimbursement for the short-acting analogues in Type 2 is not justified on present evidence, and later reached the same conclusion about long-acting analogues. The resulting controversy was resolved when the manufacturers reduced the price of their analogues to that of human insulin. A similar concession for all analogues would have reduced the English drug budget for diabetes in that year by some £80m (13.5 per cent). Conversely, the recently announced withdrawal of human Mixtard insulin will – assuming that all 90,000 patients affected transfer to analogue mixtures – increase costs by approximately £15m.

The inordinate cost of glucose test strips deserves further close scrutiny. Manufacturers compete by giving away free meters, thus locking patients and prescribers into using their own test strips. Central price reductions were imposed upon diagnostic monitoring items in 2006, but had little effect in containing costs. The weight of evidence indicates that blood glucose testing does not, in itself, improve blood glucose control in Type 2 Spring 2011 | Diabetes Update | 37

diabetes, while negative consequences such as depression need also to be taken into account. This aside, blood tests are undoubtedly a helpful educational tool, provide reassurance to many and seem essential for some.

Although these benefits may be useful, they can scarcely be said to justify the expenditure of £139m in 2007.

The excessive cost of thiazolidinediones is not in dispute, given their second-line place in the treatment of diabetes and the billions in profit that they have generated for their manufacturers. The situation is unlikely to change until generic versions come onto the market. More puzzling, however, is the declining use of sulphonylureas. Despite concerns about hypoglycaemia, these remain a very costeffective and evidence-based drug option. Unlike some more recent agents, their safety profile is not in doubt, and if they were newly discovered today, the market would be in ecstasies about them. Once again, marketing seems to have trumped the evidence.

Making a difference?

The fourth study, and the most challenging, examines both treatment and efficacy in primary care. The study is based upon analysis of a UK general practice database known as The Health Improvement Network (THIN).

The study compares consultation and prescription costs for those with and without diabetes in the period 1997–2007 and relates them to three outcomes – HbA1c, blood pressure and lipids – for the period 2001–07. Primary care consultations for diabetes

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increased from 5.4 to 11.5 per year in 1997–2007, and adjusted drug costs per patient year rose from £391 to £740. Combined consultation and per-person prescription costs rose from £602 in 1997 to £1,080 in 2007 for those with Type 2. In relative terms, combined costs were 50 per cent greater than those for someone without diabetes in 1997, and 80 per cent greater in 2007.

Drug costs related to blood glucose management accounted for just 28 per cent of total drug expenditure for those with diabetes. Use of cholesterol-lowering agents rose from 8 to 85 per cent in1997–2007; use of ACE inhibitors and angiotensin receptor blockers rose from 20 to 71 per cent and use of anti-platelet agents rose from 17 to 61 per cent. In the period 2001–07, for which data are available, total cholesterol levels fell by approximately 1.4 mmol/l (25 per cent) in those with Type 2, and systolic blood pressure fell by 8mmHg (5 per cent).

These reductions would be expected to have a beneficial impact on the progression of cardiovascular disease.

In contrast, there was effectively no change in HbA1c in those with either Type 1 or Type 2 diabetes requiring insulin. Mean values were 8.7 and 8.4 per cent at the end of a seven-year observation period, by which time the majority of patients had been transferred onto analogue insulins. By contrast, those on combined therapy with metformin and a sulphonylurea showed a reduction from 8.4 to 7.7 per cent, suggesting the need for an earlier or more aggressive use of this combination. Those on monotherapy, either metformin or a sulphonylurea, had an HbA1c of 7.2 per cent in 2007, as against 6.8 per cent in those on no pharmacological therapy.

Thiazolidinediones, unfortunately, were not studied.

What does this tell us about blood glucose control?

Previous reports from primary care in the UK have been encouraging. The proportion of patients with a diagnosis of Type 2 diabetes and an HbA1c below 7.5 per cent, for example, reportedly increased from 37.8 per cent in 1997 to 54.9 per cent in 2007. How can this be reconciled with the findings of the study under discussion? It’s most likely that the reported improvement in glucose control is because of earlier detection and more aggressive management of those in the earlier stages of Type 2.

Sadly, there is little evidence to suggest that those with more advanced beta cell failure, whether due to Type 1 or Type 2, are any better off than they were 10 years ago.

A modern Cassandra The increasing burden of diabetes on the healthcare system is reflected in a recent 50 per cent increase in hospital costs for those with diabetes. Out of every £8 spent on acute hospital care in the UK, £1 is spent on diabetes. In line with global trends, the cost of diabetesrelated prescriptions is rising at approximately 50 per cent in excess of their volume, in contrast with falling costs for other high-volume items such as statins and cardiovascular drugs.

Remarkably, current prescribing practice in the UK is completely unrelated to NICE guidance, which recommends sulphonylureas as first-line treatment 38 | Diabetes Update | Spring 2011

Counting the greater cost In response to Prof Gale’s article, Simon O’Neill, Director of Care, Information and Advocacy at Diabetes UK, told Update: “This large rise in diabetes drug prescriptions and costs appears to be due as much to there being a far greater number of people with diabetes, and to the wider prescribing of newer and more expensive therapies.

“Diabetes UK believes that people with diabetes should have access to the most appropriate treatment to manage their condition. For those for whom older therapies are effective, they should be allowed continued access to those, but where people with diabetes are unable to manage their diabetes effectively, a wider range of treatment options are required.

“The long-term costs of poor diabetes management – for example, care for someone who’s had a heart attack or stroke, or lost their sight or a lower limb – far outweigh those of the drugs that can help to prevent such devastating complications.”

in some patients and as the preferred second-line treatment for the remainder. NICE also places very strict restrictions upon the use of the thiazolidinediones.

NICE firmly recommends human NPH insulin as the first-line choice in Type 2 diabetes, with biphasic human insulin as the first-line alternative; and restricting insulin analogues to second line-use, and only in special circumstances. Routine blood glucose testing should be restricted to those with Type 1 diabetes, while more directed use is recommended in Type 2. Simple adherence to these guidelines would cut the UK bill for diabetes-related agents by about 25 per cent.

Sadly, however, NICE guidelines are toothless, except where there are special cost implications. So, NICE, like Cassandra, seems fated to speak the truth but be utterly ignored – to the extent that one insulin manufacturer is busily removing its entire line of human insulins.

Cost is a four-letter word In a deep financial recession, cost-effective, evidencebased management of diabetes will be at a premium.

These studies make it clear that our prescribing habits for diabetes are neither. You could argue that the prescribing budget is a relatively minor part of the total bill for diabetes, and so it is. It is also a painless way of saving the NHS approximately £150m per year, opportunity costs that could – if only the system allowed – make a real difference to the quality of care for people with diabetes.

i This is a digested version of Gale EAM, Commentary.

Diabetes in the UK: time for a reality check? Diabetic Medicine 27; 973–976. For the full version, visit www.diabeticmedicinejournal.com/du9. For the other articles, visit www.diabeticmedicinejournal.com/du5 • www.diabeticmedicinejournal.com/du6 • www.diabetic medicinejournal.com/du7 • www.diabeticmedicine journal.com/du8.

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At your service

SystmOne is go No one involved in diabetes care would argue with the need for integrated services, and the important role robust IT plays in making that happen. Gillian Hawthorne reports on how, following a decision in 2009, the Newcastle diabetes service went live on SystmOne in February 2011

F

or as long as I’ve been a diabetes consultant since the early 1990s, diabetes services have always aspired to provide integrated care for people with diabetes. The unnecessary duplication of blood tests and physical examinations, because the necessary information is not available at consultations, is frustrating and time consuming for healthcare professionals and patients alike. People with diabetes attending our diabetes centre would often say that they had just had a podiatry examination or that their GP had done blood tests two weeks previously, and so on. But we didn’t have this data, so we’d repeat the tests – just to be sure. Meanwhile, Quality, Innovation Productivity and Prevention (QIPP), which works at a national, regional and local level, stresses the need to reduce waste in the NHS. One straightforward way

of doing just that is to make shared patient information easily accessible to all those healthcare professionals involved in a patient’s care, and so avoid unnecessary duplication of effort.

Making the move Since 2005, as part of the National Programme for IT North of Tyne, the strategic solution has been to deploy TPP SystmOne to GP, community, child health, walk-in centre and prison services as an electronic healthcare record. In Newcastle, 40 per cent of GP surgeries now use SystmOne. Meanwhile, community services, including physiotherapy, out-of-hours services, walk-in centres, community nursing and podiatry, have been transferring records onto the system for the past five years.

Spring 2011 | Diabetes Update | 39

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In 2009, Newcastle Primary Care Trust accepted the case for moving the diabetes service in Newcastle to SystmOne, made it a priority and allocated a project team to see it through. For this to happen successfully, it was essential that healthcare professional, administrative and clerical staff were all fully involved. All members of the team had been frustrated by the limitations of the existing databases. Secretarial staff, in particular, were keen to move from the PROTOS data-entry system, as there was a perception that it led to delays in patients’ letters being typed. Healthcare professionals, meanwhile, were keen to move to the rapid sharing of information with primary care.

Mapping the processes The business analysis team from NHS North of Tyne carried out an analysis of the whole diabetes service and mapped all current processes. The Newcastle Diabetes Centre provides specialist diabetes and community diabetes services. All patients attending the centre give their consent for their clinical data to be collected and stored on the PROTOS database.

This could not run during patient consultations, as the screen loading was slow and unwieldy, so all data had to be entered retrospectively. It was also slow and difficult to use for audit or outcome data to support service development or doctor revalidation.

As it was a clinical database, an additional database was held on Telecare, which was used for scheduling all outpatient appointments and providing commissioners with performance data.

A major limitation for a community-based service not linked to a national application, such as a PAS system, was that deceased patients were not routinely identified and their records updated. All information about patients was recorded in paper file notes, with dietitians and diabetes nurse specialists holding their own notes and filing these in the paper file when an episode of care had finished. Letters were dictated after clinic, typed by the secretaries and signed prior to dispatch. The process of sending out a letter after a consultation could take up to eight weeks. Data about all services was held on Microsoft Access databases, so that audit information was readily accessible. For example,

40 | Diabetes Update | Spring 2011

We, on the other hand, planned to go from zero IT to an electronic patient record in one go in the community-based education module that supports DESMOND and other community-based educational activities, eight Access databases were routinely in use. All required demographic details to be entered separately.

Podiatry staff, although based at the centre and involved in shared consultation, recorded all their information in a podiatry record stored separately from the diabetic case notes. It was, therefore, possible for patients to attend the centre and have their feet examined twice on the same day, because the data from one part of the centre could not be accessed.

In all, the business analysis team mapped 22 separate patient pathways and the processes used to drive the pathways, including everything from the handling of referrals, appointments and DNAs to clinical processes.

Process maps were made and pasted on the walls of the seminar room. All members of staff were invited to review these and highlight any areas that had been inadvertently left off. We found that we had missed the psychologists and the medical foot clinic.

The next stage was to see how a functioning service worked on SystmOne. Dr Richard Pope, Consultant Diabetologist and Medical Director at Airedale Hospital NHS Trust, and colleagues from Calderdale and Kirklees paid a visit to demonstrate the workings of their diabetes service. They stressed that, in their area, most GP surgeries were on SystmOne and that their service had evolved over some years. We, on the other hand, planned to go from zero IT to an electronic patient record in one go.

Implementing the community module In August 2010, we decided to try for a ‘quick win’ by converting the community education module to SystmOne. As this was a defined pathway within our service, it seemed a reasonable contender for piloting the IT system. All staff were issued with a Smart card, and relevant diabetes nurses, dietitians, secretaries and administrative staff were given intensive training over four days. Trainers were available for three weeks after the system went live. The net result was a great success: eight Access databases were no longer required, and a standard single process for managing the pathways had been achieved. Information is now shared directly with SystmOne practices, with referrals being made electronically.

More importantly, these practices can view scheduled appointment and attendance data at community-based education programmes. Surgeries using different IT systems can refer by email, although paper referrals can also be scanned into SystmOne.

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Future processes, future workshop To map future processes, the Newcastle Diabetes Centre needed to make decisions on business process change. All business processes for all clinics were standardised, except those associated with the young adults service and the medical foot clinic.

This reduced standard operating procedures, for all other pathways, from the previous 22 to just eight different processes, and standardised the handling of referrals, appointment booking, DNAs and clinic management. Secretaries type up clinical letters and send consultants a computer alert for corrections and/or signing off. These are then communicated to SystmOne practices via the shared patient record.

Email correspondence is now used for those nonSystmOne surgeries that indicated a preference for this method.

Other pathway changes included: allowing patients to make appointments with the dietitian at the point of referral before they leave the centre, rather than having to wait for an appointment to be sent out later; and changes to the handling of blood samples, with the results immediately attached to the patient record, and an automated computer alert to the consultant for results outside the normal range.

patients currently receiving care at the diabetes centre.

Attached to each patient record were clinic letters dating back three years, but because the documents contain clinical information, this was the responsibility of diabetes staff. The original record was then archived and stored. The timescale for transferring all booked appointments took longer.

• Registration authority stage. Smart cards were set up with different levels of access, eg doctors can see the whole of the medical record, while receptionists see only the details necessary for their role.

Building templates

Training and delivery

Templates for each clinical care pathway were built and agreed with each of the clinical teams. These were modelled on existing documentation, and relevant forms updated. In one significant innovation, a care plan sheet was devised that could be printed off and given to the patient at the end of a consultation, and a copy sent to GPs not on SystmOne, thereby avoiding the need to dictate a letter at the end of the session.

A major issue around the templates was the use of read codes. As GPs hold the clinical electronic record, it is important that we use codes for ‘history of’, instead of diagnostic equivalents, such as QOF codes, that trigger payments to GPs. When the record is shared, all events coded in ‘diabetes’ will be shared with the GP, which means that those events not coded as ‘history of’ may be coded as ‘new occurrences’.

The National Coding team had to re-create some read codes (212) to support the recording of clinical information. A local meeting with GP users of SystmOne clarified some aspects of record sharing, including the importance of patient consent.

Next steps in the process included: • Unit configuration checking stage. The principal users, the clinicians who had designed the templates, checked them all. Modifications were made after discussions with colleagues and the final versions were then signed off. Vicky Westgate, the Diabetes Centre Manager, took responsibility for the configuration of the full SystmOne unit – a significant undertaking.

• Data entry stage. During the data entry stage, two data entry clerks spent four weeks entering the demographics and referrals for all active 4,500

A major effort was made to support and train all staff in preparation for Go Live on 8 February 2011. Previously, dummy databases had been set up and all staff attended training sessions.

Clinical appointments were reduced for the two weeks immediately following the Go Live date to give clinicians time to familiarise themselves with the system while still providing clinical care. All paper records have now been discontinued.

More change ahead There’s no doubt that moving a diabetes service from paper records to 21st-century electronic records has highlighted many of the inefficiencies inherent in the processes currently used to deliver diabetes care.

Mapping out how our systems worked showed us that we could make many changes to work more effectively. All staff have been involved in remodelling the pathways and have ownership of the redesigned service. At the same time, we were lucky to receive expert support from the project team, who also made the whole process a lot of fun. Initial fears among some staff members over keyboard skills faded once it became clear how the templates would function. We expect that as the service embeds on SystmOne, there will be more changes to the delivery of diabetes services.

Gillian Hawthorne is a Consultant Community Diabetologist and Head of Clinical Diabetes Services, Newcastle PCT

i For more on SystmOne, contact Gillian Hawthorne at Gillian.Hawthorne@newcastle-pct.nhs.uk.

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Care delivery

NaDIA 2010 The National Diabetes Inpatient Audit 2010 set out to ask three basic questions. Dr Gerry Rayman and Naomi Holman report on the answers it elicited from an impressive number of participants

T

he National Diabetes Inpatient Audit (NaDIA) 2010 is a snapshot audit of the diabetes care received by patients on medical and surgical wards in England. Conducted on a single weekday in the first two weeks of November 2010, it involved diabetes teams collecting clinical data from patients’ care records and, where possible, patients completing a patient-experience questionnaire. NaDIA 2010 was funded and organised by NHS Diabetes; Diabetes Health Intelligence, a strategic programme of Yorkshire and Humber Public Health Observatory, conducted the data analysis. The audit built on the substantial effort put into, and learning that arose from, the 2009 pilot inpatient audit. However, a direct comparison between the two audits is not possible, as the questionnaires were redesigned following feedback on the original questions.

NaDIA 2010 set out to answer these questions: • Did any harm result from the inpatient stay?

• Did diabetes management contribute to avoidable harm?

• Were patients’ experiences of their inpatient stays favourable?

Participation was impressive: 168 units, representing more than 90 per cent of those eligible, audited 12,191 inpatients with diabetes, and 4,745 patients (38.9 per cent) completed patient-experience questionnaires. This and the 2009 audit are the largest audits of inpatient diabetes care to date. With this level of participation, the results are likely to be highly representative of care across England.

Of the total number of patients in hospital at the beginning of November 2010, 15 per cent were found to have diagnosed diabetes. Of these, 7 per cent had Type 1, 30.9 per cent had Type 2 treated with insulin (with or without tablets); 45.5 per cent had Type 2 treated with tablets but not insulin; and 16.6 per cent had Type 2 managed by diet alone. Inpatients with diabetes were, on average, older and more likely to have undergone emergency admission than other people in hospital.

A ‘good diabetes day’ was defined as a day when the frequency of blood glucose monitoring was appropriate, and there was no more than one blood glucose measurement of 11mmol/l or greater and none of less than 4mmol/l. After adjusting for length of stay, the average number of good diabetes days in the seven days prior to the audit was four, or 56.5 per cent of the time. After adjusting for case 42 | Diabetes Update | Spring 2011

mix, there was a greater than fourfold variation in the average number of good diabetes days across the participating units. This marked variation suggests that there is considerable scope to improve blood glucose control for many people with diabetes in hospital.

Medication errors As with the 2009 pilot audit, prescription errors and drug-management errors were frequent and remain an area of serious concern. Overall, 37.1 per cent of the inpatient prescription charts of patients with diabetes had at least one medication error, while 26 per cent had at least one prescription error, and 20 per cent had one or more medication management errors.

Failure to adjust medication when blood glucose was persistently greater than 11mmol/l, and better glycaemic control was required, was the commonest drug-management error. Patients who experienced one or more medication errors were more than twice as likely to have had a serious hypoglycaemic episode (less than 3mmol/l).

The abbreviation of the word ‘unit’ to ‘u’ remains the most common prescription error. The National Patient Safety Agency’s 2010 Rapid Response Report, which set out common errors relating to insulin prescriptions, clearly specified that they should always include the word ‘unit’ written in full, not the abbreviation ‘u’, and that all staff involved in the prescription and administration of insulin should undergo specific training. To support this, NHS Diabetes and the NPSA have released an e-learning module on the safe use of insulin. Additionally, many of the units that participated in the 2009 inpatient audit reported that they have since implemented training programmes on the use of insulin for nursing and medical staff, while others have introduced new

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prescription or drug charts, with the aim of reducing errors. Although these initiatives should reduce such errors, it was too early to assess their impact, as they have only recently been introduced.

Avoidable patient harm The audit found that some inpatients experienced considerable harm during their stay, with 266 (2.4 per cent) having a hypoglycaemic episode severe enough to require injectable treatment. At the time of the audit, 44 people had developed diabetic ketoacidosis after admission to hospital. Such complications are potentially life threatening and lead to longer hospital stays – but are largely preventable. Since the 2009 audit, many hospitals have implemented revised guidelines or pathways to prevent hypoglycaemia and/or diabetic ketoacidosis, and NHS Diabetes has published the Joint British Diabetes Societies national guidelines on the management of both (see ‘information’, below). Using NaDIA 2010 as a baseline, it should be possible to assess the impact of these guidelines on these complications in future.

The audit found that only 27.2 per cent of inpatients with diabetes had a documented foot examination, and more than one in 50 had developed an inpatient foot complication that may have been avoided by risk assessment and preventative care. This is a concern because, although not directly comparable, similar poor results were found in the 2009 audit, and the widely acclaimed document Putting Feet First (see ‘information’, below) published in 2009 clearly states that inpatients with diabetes admitted to hospital for any reason should be assessed for risk of new-onset foot disease.

Specialist input The audit also collected data on the provision of specialist diabetes staff for inpatients with diabetes.

The time given in minutes per patient was: diabetes inpatient specialist nurse, 26; generic diabetes specialist nurse, 10; consultant, 12; podiatrist, 6; and dietitian, 3. It was not possible to assess how much of this time was directly related to bedside care.

There was marked variation across units, with some having no inpatient dietetic time and little specialist nurse time. Further information is needed on the organisation and roles of specialist staff to assess the impact of diabetes specialist teams on clinical outcomes and patient experience.

More than 10 units reported having used the results of the 2009 inpatient audit successfully to support business cases for additional diabetes specialist staff. Other units reported positive changes in the organisation and working patterns of the diabetes specialist teams since the 2009 audit, including greater team bonding with a focus on a common goal.

Patient experience Among those who completed a patient questionnaire, only 12.9 per cent indicated that they had definitely been involved in designing a treatment or care plan, as recommended in Diabetes UK’s Diabetes Care in

Hospital. A further 16.2 per cent had been involved to some extent, while 28.5 per cent did not have a care plan but would have liked one. Between hospitals, the proportion of inpatients with diabetes reporting that they had been involved in designing a care or treatment plan ranged from less than 10 to more than 90 per cent.

With regard to dietary needs, 15.9 per cent of patients reported that they had to have food brought into hospital to meet their needs, while 13 per cent indicated that the hospital did not provide the right type of food for their diabetes management. The choice of meals was rarely or never suitable for 5.5 per cent of inpatients with diabetes, and the timing of meals was rarely or never suitable for 4 per cent.

A number of units reported that, since their participation in the 2009 inpatients audit, they have altered insulin prescriptions to be given at meal times rather than at set times during the day, with the aim of reducing adverse events.

A comprehensive picture NaDIA provides a comprehensive picture of the characteristics of inpatients with diabetes, their clinical care and the patients’ perspective on their stay in hospital. As noted, although many hospitals started to make changes following the 2009 audit, NaDIA 2010 shows that there is still room for much improvement. Also, as the 2010 audit followed publication of the 2009 report by only six months, it would have been too much to expect a significant change in care, with so little time for implementing and embedding changes in practice.

The real value of the audit depends on the thoughts and actions that it prompts at a local level. Hopefully, more teams will reflect on the results of the 2010 audit for their unit and consider how inpatient care for people with diabetes can be improved.

From 2011, NaDIA will be run on an annual basis as part of the National Diabetes Audit. The data collected in 2010 will provide a robust baseline against which to measure changes in service delivery in the future.

Naomi Holman is Head of Health Intelligence, Diabetes Health Intelligence, Yorkshire and Humber Public Health Observatory Gerry Rayman is the NHS Diabetes National Clinical Lead for Inpatient Diabetes Care and Consultant Diabetologist at Ipswich Hospital NHS Trust

i For a summary of results, visit www.yhpho.org.uk/ Diabetes_inpatient _audit. Units can also request the raw data for additional local analysis. • The Hospital Management of Hypoglycaemia in Adults with Diabetes Mellitus and The Management of Diabetic Ketoacidosis in Adults: www.diabetes.org.uk/adult-DKA-management. • Putting Feet First: www.diabetes.org.uk/feetfirst. • To order Diabetes Care in Hospital (free+p&P, code 9859), call 0800 585 088 or visit www.diabetes.org.uk/shop.

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Insulin Wallchart Spring 2011_V1

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Insulins Name

Manufacturer

Source

Delivery system

Taken

Onset, peak and duration 0 2 4 6 8 10 12 14 16 18 20 22 24 26 28 30 32 34 36

Rapid-acting analogue NovoRapid

Novo Nordisk

Analogue

Vial, cartridge, prefilled pen

Just before / with / just after food

Humalog

Lilly

Analogue

Vial, cartridge, prefilled pen

Just before / with / just after food

Apidra

Sanofi-Aventis

Analogue

Vial, cartridge (two types), prefilled pen (two types)

0–15 mins before, or soon after, a meal

Actrapid

Novo Nordisk

Human

Vial

30 mins before food

Humulin S

Lilly

Human

Vial, cartridge

20–45 mins before food

Hypurin Bovine Neutral

Wockhardt UK

Bovine

Vial, cartridge

30 mins before food

Hypurin Porcine Neutral

Wockhardt UK

Porcine

Vial, cartridge

30 mins before food

Insuman Rapid

Sanofi-Aventis

Human

Cartridge, prefilled pen

15–20 mins before food

Insulatard

Novo Nordisk

Human

Vial, cartridge, prefilled insulin doser

As advised by the healthcare team

Humulin I

Lilly

Human

Vial, cartridge, prefilled pen

About 30 mins before food or bed

Hypurin Bovine Isophane

Wockhardt UK

Bovine

Vial, cartridge

As advised by the healthcare team

Hypurin Bovine Lente

Wockhardt UK

Bovine

Vial

As advised by the healthcare team

Hypurin Bovine PZI

Wockhardt UK

Bovine

Vial

As advised by the healthcare team

Hypurin Porcine Isophane

Wockhardt UK

Porcine

Vial, cartridge

As advised by the healthcare team

Insuman Basal

Sanofi-Aventis

Human

Vial, cartridge, prefilled pen

45–60 mins before food

Humulin M3

Lilly

Human

Vial, cartridge, prefilled pen

20–45 mins before food

Hypurin Porcine 30/70 Mix

Wockhardt UK

Porcine

Vial, cartridge

As advised by the healthcare team

Insuman Comb 15

Sanofi-Aventis

Human

Cartridge, prefilled pen

30–45 mins before food

Insuman Comb 25

Sanofi-Aventis

Human

Vial, cartridge, prefilled pen (two types)

30–45 mins before food

Insuman Comb 50

Sanofi-Aventis

Human

Cartridge, prefilled pen

20–30 mins before food

Humalog Mix 25

Lilly

Analogue

Vial, cartridge, prefilled pen

Just before / with / just after food

Humalog Mix 50

Lilly

Analogue

Cartridge, prefilled pen

Just before / with / just after food

NovoMix 30

Novo Nordisk

Analogue

Cartridge, prefilled pen

Just before / with / just after food

Lantus

Sanofi-Aventis

Analogue

Vial, cartridge (two types), prefilled pen (two types)

Once a day, any time (but at same time each day)

Levemir

Novo Nordisk

Analogue

Cartridge, prefilled pen, prefilled insulin doser

Once or twice daily (at same time each day)

Short-acting / neutral

Medium and long-acting

Mixed

Code: 6430W

Analogue mixture

Long-acting analogue

duration All the information in this wallchart has been supplied and checked by the manufacturers.

Company contacts Lilly: 01256 315000 Novo Nordisk: 0845 600 5055

Diabetes

Update

Sanofi-Aventis: 0845 606 6887

Wockhardt UK: 01978 661261

Times are approximate and may vary from person to person. This is a guide only.

onset peak

The charity for people with diabetes 020 7424 1000 | info@diabetes.org.uk | www.diabetes.org.uk A charity registered in England and Wales (no. 215199) and in Scotland (no. SC039136). © Diabetes UK 2011