2008 GROUP MEETINGS

SEPTEMBER 2008

Martin Lodemore is the Patient Liaison Officer for the Diabetes Research Network and he came to our September meeting to speak about its work. The DRN is funded by the Department of Health. It is a not for profit organisation and does not fund research but acts as a co-ordinating centre. It looks for well designed studies which will directly benefit people living with diabetes and makes sure that these studies are then translated into improved care. There are eight regional networks. The aim is to make research relevant and to ensure that people living with diabetes have influence. All projects are reviewed by an independent panel of experts and lay advisors. Current research being undertaken covers both Type 1 and Type 2 diabetes, diagnosis, prevention and education.
If you would like to know more about the Diabetes Research Network or to become involved with its activities, visit the website:   www.ukdrn.org

or contact Martin Lodemore 020 7594 1796 email   m.lodemore@imperial.ac.uk

PANDAs

Patients ANd Decision AidS for Type 2 Diabetes

Professor Nigel Mathers gave a progress report on PANDAs at the September meeting.
This research project was started in August 2007 when there seemed to be a need for a Patient Decision Aid to support patients and healthcare professionals when starting insulin treatment.
Prof Mathers stressed the need for doctors and patients to work closely together when it comes to decision making. The doctor needs to provide the facts and evidence and to give support and advice. For example if an individual's HbA1c reaches 10 they may need to consider going on to insulin. At such a stage 49 out of every 100 people develop complications.
The research project began with a marketing campaign and then practices were recruited to take part in the study. There is a Newsletter and a guide for doctors and nurses, and patients are given questionnaires about how diabetes affects them.
Patients receive booklets in which stickers are placed so that information can be tailored to suit the individual and choices can be made based on the options available.
For more details visit the website: www.shef.ac.uk/medicine/research/aupmc/pandas/welcome.html

MEN WITH NEWLY DIAGNOSED TYPE 2 DIABETES

In July Dr. Robin Lewis, Principal Lecturer from Sheffield Hallam University spoke about his research work in which, over a period of 12 months, he had interviewed men over 30 newly diagnosed with Type 2 diabetes and who had no other serious health problems. He aimed to find out how they coped and why some men coped better than others, regardless of their level of intelligence. His presentation was entertaining as well as informative.

He began by talking about the perceived role of men as the stronger sex, along with modern expectations of them to be "new men" which caused some confusion about how they should behave. It is generally regarded as a "weakness" for a man to be concerned about health and safety and it is more feminine to seek help over such matters. The average age of the onset of Type 2 diabetes is coming down along with the increase of 3 aspects of  metabolic syndrome (- larger waist sizes, high blood pressure and high cholesterol levels) Men tend to accept symptoms such as increased thirst, tiredness, visiting the toilet frequently etc. as part of the "normal" effects of their lifestyle or the ageing process. They don't make appointments with their doctor, partly because it is inconvenient to take time off during working hours. If they are married or with a female partner it is often the woman who looks after the health of the family, and the man will visit a doctor if prompted to do so.

Once diagnosed a man with Type 2 diabetes faces a series of negotiations, firstly with his "inner self", then with his partner or spouse, his wider family and then also with work colleagues and mates and with health care professionals. It is all about achieving a balance between different aspects of home life, work schedules and managing his diabetes e.g. in certain jobs it may be difficult to eat at set times, other members of the family have their own ideas and requirements which may conflict with his. With so many choices and decisions to make it is not surprising that some men, however intelligent, find it difficult to successfully manage their diabetes without making sacrifices in other areas of their life.

THE POWER OF WORKING TOGETHER

In May Bridget Turner. Head of Healthcare Policy at Diabetes UK, spoke to us about "The power of working together". She came armed with a wealth of statistics, including the fact that diabetes consumes 5% to 10% of total health care resources. Although it is "a killer without a cure" it can be managed and people can be supported in order to self manage and thus prevent complications. There are over two million people with diabetes in the U.K. today and this figure is set to rise. It is common for a person to have Type 2 diabetes for 9 to 12 years before it is actually diagnosed.
In 2006 a Government White Paper "Our Health, Our Care, Our Say" set out a plan to improve access to services and integrate health and social care. The National Service Framework for diabetes set targets for local NHS performances and it has emerged that not all Primary Care Trusts are delivering and that NICE guidelines are not implemented consistently. For example less than 10% of those diagnosed have accessed structured education programmes, and people are not getting enough say in local care.
Since it was set up in 1934, membership of Diabetes UK has risen to about 180,000. Medical research funding amounts to £7 million and the Careline receives 40,000 enquiries per year. Diabetes UK runs educational events, holidays etc. and the information and support it gives is highly trusted. Its website receives over one million visits per year. It aims to raise awareness and to campaign to get the Government to deliver. Priorities for 2008 include improved services for children and young people, an emphasis on self management including access to patient education as well psychological and emotional support, and access to specialist services (such as foot care, retinal screening etc).
By working together and by promoting and distributing Diabetes UK information we can all help to raise awareness and let people know what care to expect. Local people need to feed back their experiences and problems to Diabetes UK who can then present evidence to Primary Care Trusts and to the Government. By joining the Diabetes Campaigners Network (DCN) you receive information to help you in writing to your M.P. and in asking your PCT relevant questions.

DAFNE

Carolin Taylor was the speaker at our April meeting. She is a Diabetes Specialist Nurse and DAFNE lead educator and she gave us an update on the DAFNE scheme. (Dose adjustment for normal eating). The scheme is a training course which enables people with diabetes to learn skills to help in day to day decision making and adjusting their levels of insulin. Courses take place at the Northern General Hospital over 5 consecutive days.
It all began in 1998 when health professionals from Sheffield went over to Germany to look at courses there. In 1999 people began to train to run similar courses, and 3 centres were set up (Sheffield, North Tyneside and Kings College London). By 2000 the first trial courses had been completed and questionnaires completed by participants showed improvements in quality of life. There was a general increase in well being, a reduction in the negative aspects of diabetes and a high level of satisfaction despite people increasing their number of injections per day. An audit asked about 18 different areas of life and whether they were affected by diabetes. All areas showed an improvement after people had completed the DAFNE course.
The trial had been funded by Diabetes UK and when this came to an end Novo Nordisk provided some funding. In 2002/ 2003 the Department of Health funded training in 10 new centres, and 16 courses were able to be run in Sheffield. Then in 2004 the PCT began to provide funding which enabled the Sheffield centre to employ a full time nurses and a part time dietitian to run 12 courses each year. Review clinics (2 per month) were also set up. Other new centres continue to be set up with various methods of funding, and Novo Nordisk still give training grants.
Over 700 people have done the course in Sheffield and there are now 66 centres in the UK and Eire and 13 in Australia.
Prof. Heller was recently awarded £1.8 million to look at different ways of running the programme e.g. doing 1 day per week over 5 weeks. There are also pilots to look at insulin pump therapy, a possible refresher course and there will be a social / psychological survey.

At our March meeting Specialist Diabetes Dietitian Val Naylor covered the topic of Healthy Eating and Diabetes

This was a lively, well attended meeting. Val made us do some work by asking us to look at a series of questions and then discussing our answers. We discussed what foods raise blood glucose, fat, sugar and calorie contents of various foods and what choices to make.

At our February meeting we had a presentation by Mr. Jan Sobieraj, Chief Executive Officer of Sheffield Primary Care Trust who spoke about Diabetes Healthcare in Sheffield
He spoke about the strategy for the next 5 years for achieving balanced health. The Sheffield PCT spends £850 million per year to cover all aspects of healthcare. There are 9 key priorities, 4 of which are related to long term conditions, including diabetes. There are now over 22, 000 people in Sheffield diagnosed with diabetes, an increase of 2,500 in 2 years, and this is likely to continue to rise. Basic diabetes care costs about £13.4 million. Sheffield currently has a high level of emergency admissions. Because planned care is cheaper as well as being better for patients, the aim is to encourage and support more self management and reduce inappropriate admissions.
At the moment most diabetes care takes place in general practice and screening for complications is done in primary care, but the management of complications and the initiation of insulin takes place mainly in secondary care. There is variation across G.P. practices with some G.P.s referring more patients to hospital. The Diabetes Service Review by the Healthcare Commission in 2007 rated the service in Sheffield "fair". The PCT would like it to be "excellent" and to provide services where people want them. They want to improve access to and uptake of diabetes services and to reduce inequalities, and aim to do this by understanding needs, planning care, looking at the variations and educating patients and NHS staff.
April 2008 sees the launch of the Diabetes Commissioning Group which will come up with a publicly available plan. The Darzi Review, commissioned by the Government to produce a strategy for the NHS, is due to make announcements in June and significant changes should be seen within 18 months.

DIABETES UK SHEFFIELD GROUP  ANNUAL REPORT  2007

At the Diabetes UK Annual General Meeting in September 2007, Douglas Smallwood (Chief Executive Officer) referred to the objective of delivering Diabetes UK’s mission by the end of 2009, ‘by improving the lives of 1.5 million people and achieving significant progress towards a future without diabetes – prevention and/or cure’. In 2007, the Sheffield Group has itself delivered substantially locally towards the Diabetes UK mission, building on previous years and achieving a highly successful year.

In 2007, The Group’s committee of nine members met on the second Tuesday of every month and all members had an excellent attendance record.
In addition to running the group, planning and carrying out their duties, individual committee members have given their time to provide Diabetes UK representation at Sheffield Diabetes Network meetings and on many of the Network working sub-groups. Certain committee members are also members of the Network User Group, enabling effective cross communication between the two groups.

Associate Committee Members continued to contribute in their individual special ways in 2007, by regularly and cheerfully collecting in supermarkets for hours at a time, supporting the committee, organising and contributing to citywide events and leading local diabetes support groups. It is with pride that I report that Mr Jack Wallace, an Associate Committee Member, was awarded a Certificate by Diabetes UK, to mark his outstanding efforts to raise funds by supermarket collections.

During the year, monthly general meetings were held on the third Thursday of every month and were attended by more people (278) than in the previous three years, including more people attending for the first time (72). Many members attended meetings regularly and their support was always appreciated. All speakers who provided talks at general meetings gave their time free of charge and at the end of their working day. On behalf of the Group, I would like to take this opportunity to thank them.

Between 2005 and 2007, collaboration in local research has developed and Group members have been involved in designing and/or participating in several research programmes and workshops led by University of Sheffield academic teams, including the DiGEM Study (blood glucose monitoring in type 2 diabetes), the PANDA Study (a decision aid for starting insulin) and the MOTIVATE Workshops – a European initiative and a Leonardo da Vinci programme, for training motivational skills in Health and Social care.

The Diabetes for Beginners (D4B) Scheme expanded in 2007 and 568 newly diagnosed people with diabetes received their free D4B publication to help them begin their journey with diabetes. This scheme was again made possible with a generous grant from the Talbot Trust.

The committee has been enthusiastic in fostering the development of local Diabetes Support groups across the city providing local ‘nurturing’ and living with diabetes programmes. Enthusiastic individuals and/or Primary Care Trust staff lead the groups and organise the programmes. To date, there are now five groups holding regular meetings at Woodhouse, Norfolk Park, Dovercourt, Woodseats/Abbey Lane and Shiregreen.

Fundraising was a major success in 2007 with £18,176 raised by the Group over the year. Early in the year £3000.00 raised was donated to the Sheffield Research Team led by Professor Simon Heller. In October, two committee members attended the Voluntary Groups Conference and presented a cheque for £10,000.00 to the Chairman of the Board of Trustees, Professor Simon Howell for the Diabetes UK Research Fund. Funds were raised in many ways including supermarket collections, static collecting boxes, unsolicited donations, legacies, raffles and at special events such as the annual ‘Walk in the Park’. Other initiatives raising funds included second hand book sales at a number of events held all over the city throughout the year and book sales on the Amazon website.

In 2007, the Diabetes UK Sheffield Group Website and bi-monthly Newsletter have continued to provide regular and up to date news and information, which has led the Group to become more widely known and enabled more individuals and organisations to make contact with it. Awareness of diabetes and Diabetes UK continued in 2007 during Diabetes week and with the Group’s presence at citywide events during the year.

In 2007 in association with the Sheffield Diabetes Network User Group, the Sheffield Diabetes UK Group has been active in lobbying for funding to remain in the citywide specialist diabetes service. Considerable local newspaper interest and coverage over several months was achieved. Despite pressure exerted by both groups, the Sheffield Teaching Hospitals NHS Trust took the decision to withdraw certain funding from the specialist diabetes service.

I would like to say a special thank you to all those who attended general meetings and to Associate Committee Members for all they have done for the Diabetes UK Sheffield Group in 2007: Charlotte Biggins, Susan Dunigan,
Annette and George Setterfield and Jack Wallace.

Finally, my grateful thanks individually and collectively, go to members of the committee for all their hard work and support throughout the year: Mollie Hickman (Honorary Secretary and Vice Chair), Phillip Beattie (Honorary Treasurer), Glynis Beattie (Web co-ordinator and Communications), Mick Taylor (Fundraising Co-ordinator), Michael Burgoyne, Kitty Caudwell, Nigel Sayles and Lesley Waller.

Also at the AGM Alison Iliff gave us an update on the Sheffield Diabetes Network:
As at September 2007 there are 22,000 people in the Sheffield PCT area diagnosed with diabetes, but surveys show that their level of knowledge about their condition is generally low, with about half not knowing whether they are Type 1 or Type 2. There is a lack of consistency across G.P. practices and a service review concluded that the diabetes service was "fair" rather than good indicating a need for improvement. Ideally patients should be given something in writing to refer to.

On the positive side, the target of 100% was achieved for sending out invitations to eye screening to everyone eligible. However the uptake is not as good as it should be. The target is for 80% uptake and at the moment it is 77% across the whole city but with much lower uptakes in certain areas.

Now that groups of G.P.'s are allowed to form consortia to commission or buy services, one such group in the north of the city (the SONIC consortium) is looking at a pilot scheme to provide insulin within the community instead of via hospitals. It is hoped to extend this, but it does rely on having enough qualified nurses with the level of expertise needed to deal with any problems.

A new website is about to launched covering all the local guidance about diabetes management. (Look out for more details and a link from this site)

The current PCT strategy has 9 key priorities, including diabetes.