A discussion forum for people living with diabetes and those involved in diabetes care in the UK. September 25th - October 31st 2005

Structured education - Closed

“All children, young people and adults with diabetes will receive a service which encourages partnership in decision making, supports them in managing their diabetes and helps them adopt and maintain a healthy lifestyle.” Standard 3, National Service Framework (NSF) for Diabetes.

A central part of this commitment is the provision of structured education. From January 2006 all PCTs in England must comply with National Institute of Clinical Excellence (NICE) guidance and offer all people with diabetes a ‘planned and graded programme that is comprehensive in scope, flexible in content, responsive to an individuals clinical and psychological needs, and adaptable to his or her educational and cultural background’.

  • Have you been offered and undertaken an education programme?
  • Does it fit the bill outlined by NICE?
  • Has it helped you to manage your diabetes?

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Welcome to Diabetes Dialogue!

Posted by Barry on 23/09/2005 - 10:47

This is your space to tell us about your experience of living with diabetes and give us your views on diabetes care in the UK.

Remember – your comments will form the basis of a report on the state of diabetes care in the UK that will be presented to MPs and Peers in December 2005. So, this is your chance to share your views with the aim to make impact on the policy makers!

If you have any problems accessing the site at any time or have any questions about the forum please do not hesitate to contact us at this email address: edemocracy@hansard.lse.ac.uk

Many thanks and good luck.

Milica and Barry
Hansard Society e-Moderators team

Role of education

Posted by Dr Sue Roberts on 23/09/2005 - 11:32

The part that effective self-management plays in improving diabetes care and outcomes is widely acknowledged. Key to self-management is patient education, and the contribution it makes can be as effective as drug treatments, provided that the education programme is well structured and evidence based. That is exactly why the Government has made clear that PCTs need to deliver education for people with diabetes that is as thoroughly planned, developed and evaluated as any prescribed drug would be. The reinstatement of the NICE guidelines on patient education from January 2006 will mean that PCTs must deliver high quality education that meets these standards.

At the moment, there are a number of patient education programmes being delivered throughout the UK but only a limited number of these meet the NICE guidelines and the criteria for patient education programmes recently developed by the Department of Health and Diabetes UK. Doseage Adjustment for Normal Eating (DAFNE) for people with type 1, and Diabetes Education and Self-Management for Ongoing and Newly Diagnosed (DESMOND) for people with type 2, are the two nationally available education programmes that PCTs can choose to sign up to. Where local services are already delivering their own patient education programmes, or are thinking of developing them, they should check that they meet the national quality standards.

I see that there are three major challenges in delivering effective patient education. The first is to get healthcare providers to recognise the substantial benefits of self-management and resource it accordingly. The second is for the benefits of delivering nationally resourced and developed programmes to be recognised.

The third, and in some ways the hardest, is for people who have developed their own local programmes to look at how they measure up against the NICE guidelines and agreed criteria. Many hard working and caring people have invested a considerable amount of time and energy in developing programmes that they consider meet the needs of their patients. It will need courage, honesty and integrity to re-examine them and see whether they really do what they are supposed to do.

The recent joint Department of Health and Diabetes UK report into Patient Education provides considerable support to local teams that want to look at the established criteria and bench mark their programmes against them.
Further work is planned to develop easy to follow guidance to help PCTs assess their programmes against these standards.

Dr Sue Roberts
National Clinical Director for Diabetes

On Going Education

Posted by bobmob on 26/09/2005 - 10:53

Whilst there is education in many areas for newly diagnosed patients. There is very little for existing patients. Even the recent report, that Sue Roberts mentions only makes passing reference to on-going education.
On-going education is vital for two reasons.
Firstly, as people have diabetes for a very long time time, one member of our group has been on insulin for 70 years and several for nearly fifty years early eductional messages get forgotten or distorted over time.
Secondly, as thinking on the best courses of action and treatments change over time, with new research, the contect of the message inevitably changes and existing patient need to be keep up to date.

Bob Moberly
Chairman Diabetes UK Poole Group
User Representive Poole PCT

Updating Education

Posted by Dr Katharine Mo... on 26/09/2005 - 14:27

Dear Bob,

The established diabetics do seem to get lost in the resources shuffle don't they?

What is needed is a centrally funded and provided internet course for all types of people affected by diabetes.

These are those with type one and type two. New diabetics and existing diabetics. People who are at risk of getting diabetes eg those with obesity, glucose intolerance, close family histories or who have had diabetes in pregnancy.

Patient and Health Provider alike need 24 hour access to the most user friendly, accurate and relevant advice.

This can only be via the internet.

Downloads of new information or in a format that is more helpful to individual patients or carers eg large print could be sent out to those without computer access by local diabetes educators.

What do you think?

DAFNE and DESMOND

Posted by AndrewE on 26/09/2005 - 18:47

My PCT Dibaetes Specialist Nurses are struggling to get information/course material to produce the PCT Structured Patient Education Plan particularly with regard to DESMOND. The cost of the material is prohibitive and the length the DESMOND training course may be too long for some Type 2 diabetics who have a good knowledge of their condition. Our DSN's need to have access to the DESMOND training material. The name DESMOND is banded about a lot but I haven't heard of anyone locally who has been on the course or who knows anyone who has.

DAFNE recently developed Dr Roberts?

Posted by iso8655 on 26/09/2005 - 19:23

I have been adjusting my Dosage (and Diet) for 36 years as a type 1 Diabetic.

Please do not re-hash the old stuff and call it new.

Structured Education

Posted by Mike O Pray on 26/09/2005 - 20:26

After being a type 1 diabetic for some 37 years and receiving little in the way of structured education I attended a DAFNE course some three years ago. This gave me the control over my diabetes which I had never had.I had confidence that I could then manage any food situation I found myself in. Control and confidence that I was in charge meant that I was no longer a helpless victim of diabetes.

I strongly believe that once diabetics can take ownership of their eating and taylor their insulin to suit which is what DAFNE is about, a major reason for resigned fatalism in older diabetics or denial in younger ones is removed.

If DAFNE could be offered to all type 1's within a year or two of diagnosis I am convinced that the incidence of long term complications would be reduced substantially.

There is incontrovertible evidence that investment in DAFNE courses has a high return in terms of diabetic wellbeing and subsequent NHS savings but the government largely pays lip service to investment in preventative measures such as education.

It takes the same attitude to education as many companies tend to take towards training in economic downturns. For budget managers, during difficult times, education represents an easy target for cuts. In the short term it is painless but diabetes is life long and the consequences of not investing in structured education, like the proverbial chickens, come home to roost.

DAFNE recently developed

Posted by hihelly on 26/09/2005 - 22:06

I have had diabetes now for 25 years and it has never been properly controlled, despite being on the so called adjustable regime of am and pm long acting insulin, and short acting before meals supposedly adjusted to suit. I went on the DAFNE programme 2 years ago and my HbA1c has dramatically improved, DAFNE is different, it is far more systematic and certainly worked for me

DAFNE follow up

Posted by hihelly on 26/09/2005 - 22:16

I attended a DAFNE programme 2 years ago, and have never looked back since, my HbA1c results have dramatically improved ( although still not quite at the recommended level - so i keep being told). The hospital where i attended did a monthly drop in session for a while but this has now stopped and i think it is a shame as i found this invaluable to attend occaisonally for support from the team and from other patients who had been through it. My usual hospital clinic does not have dafne educators working there and although the doctors and nurses have been on awareness study days when i attend clinic, i do not feel they fully understand the process, and i find it difficult to explain about my control and doses etc. My GP's have even less understanding and just tend to constantly re-iterate the fact that i am heading for complications when i visit them, because my HbA1c is still not as low as the perfect recommended range.

Ongoing education: reply to Bob Moberly

Posted by TerryT1 on 27/09/2005 - 03:12

Bob
When I was diagnosed as T1 two years ago there was no education. Only the party line from the dietician who refused to even countenance my counting carbs to match to insulin. I was an absolute novice and my idea seemed to make sense to me. Instead I was to eat lots of carbs and guess doses, in effect.

Later after asking, I found I couldn't do DAFNE until I had been diabetic for two years and shown something along the lines of "sufficient motivation". But that was academic, because apparently it wasn't available in south London anyway.

So I went away and searched the American websites for info – you wouldn't catch British sites giving away medical secrets of the sort involved in how to implement a DAFNE-type regime – and got the basic principles. I then implemented these with reasonable success.

I have to say that I was filled with motivation in my early diabetic days. Now, though, although my head says I could probably learn something from DAFNE, were it offered, my instinct is that it's not worth five working days of my life.

It seems to me that if you want education, you don't expect any help from the system, you contribute to alt.support.diabetes.uk or trawl the web.

Terry T1 DX2003
18 Lantus + Novorapid as necessary