Campaigning Against Hospitals Dropping DAFNE

11 posts, 5 contributors

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JayBee DAFNE Graduate
James Paget University Hospitals NHS Foundation Trust
764 posts

Is anyone else on here campaigning to stop their hospital from dropping DAFNE after a CCG decision based on funding, and changing it for their own-made GP based structured education course?

I have been for the last 8 months, contacting both my hospital and the CCG, and the responses from some of the HCPs have been outrageous.

My own hospital describe their new alternative course as being like BERTIE which does not meet NICE guidelines. BERTIE has no outcome profile as it is not audited and so neither the course delivered, nor the results obtained, are predictable, therefore not NICE guidelines recommended ( as per point 1.3.4: The outcomes are audited regularly. [new 2015] ). The DAFNE audit, which is the main reason for DAFNE's extra cost, does give the benefit of providing a known, cost saving outcome.

If there was any one else in a similar situation, are you having any better luck getting your hospital or CCG to understand the huge mistake they're making?

Thanks in advance.

novorapidboi26 DAFNE Graduate
NHS Lanarkshire
1,762 posts

I am shocked that your hospital is thinking about getting rid of it...

Is this because there has not been a good uptake of patients attending...?

Having the knowledge DAFNE provides will change lives....

marke Site Administrator
South East Kent PCT
641 posts

sadly its not about attendance its about finance. The centres have to pay the DAFNE Programme fees for being allowed to run the course. Many centres have decided to invent their own courses that they don't have to pay for. In Kent its called KATIE ( Kent Adult Type 1 Education, I think ) and is similar to DAFNE. It has a waiting list of about 18 months. Quite a number of centres have gone solo over the last few years. A national programme would be better but in an organisation like the NHS bureaucracy trumps everything else, so Centres fall away without any real change in approach. But hey enough of my bitter twisted views Twisted Evil

JayBee DAFNE Graduate
James Paget University Hospitals NHS Foundation Trust
764 posts

I've heard they have a replacement course planned but getting info about it has been like getting blood from a stone. It's like no one knows what's happening and some HCPs are now being extremely dismissive towards my concerns, and being very anti-DAFNE. The fact I'm DAFNE trained is actually something my hospital is using against me so they don't have to help me. They're dropping DAFNE and treating patients like that... How unprofessional. It's understandable why low uptake would be a thought but like Marke has said, it definitely looks more to be about finances. Patients are just numbers is all I'm getting from this.

marke Site Administrator
South East Kent PCT
641 posts

I have answered on another thread but a quick statement. The replacement course is called DAFNEPlus and they have only just been awarded the grant to run it. Simon and I are involved as Technical Patients because we run DAFNEOnline. I am happy to share information on it, the people heading it are not secretive and want patient involvement. Hopefully things will start developing with it over the next few months,

novorapidboi26 DAFNE Graduate
NHS Lanarkshire
1,762 posts

marke said:
sadly its not about attendance its about finance. The centres have to pay the DAFNE Programme fees for being allowed to run the course. Many centres have decided to invent their own courses that they don't have to pay for. In Kent its called KATIE ( Kent Adult Type 1 Education, I think ) and is similar to DAFNE. It has a waiting list of about 18 months. Quite a number of centres have gone solo over the last few years. A national programme would be better but in an organisation like the NHS bureaucracy trumps everything else, so Centres fall away without any real change in approach. But hey enough of my bitter twisted views Twisted Evil



I will always be loyal to DAFNE but I suppose as long as the education is getting out there and its as good or better than DAFNE its not the end of the world....

What's to stop DAFNE trained HCPs educating people themselves...?

Is there any legal issues?

Peter DUAG Committee Member
University College London Hospitals (UCLH)
105 posts

marke said:
I have answered on another thread but a quick statement. The replacement course is called DAFNEPlus and they have only just been awarded the grant to run it. Simon and I are involved as Technical Patients because we run DAFNEOnline. I am happy to share information on it, the people heading it are not secretive and want patient involvement. Hopefully things will start developing with it over the next few months,



Mark, I think JayBee is referring to a replacement course that James Paget are developing rather than to DAFNEplus. As with your case, they are saying that it will be based on DAFNE.

You correctly say that it the financial cost of participating in DAFNE that is the main reason for it being dropped. There is also a degree of "not invented here" amongst the medical staff, particularly when staff change in a DAFNE centre.

The sad fact is that, in addition to James Paget in Norfolk, which started this thread, there are three other services currently under threat:
  • Royal Berkshire in Reading
  • South West Essex
  • NHS Lanarkshire

This is known as each service has to give notice of their intention to terminate their DAFNE service to the Central DAFNE team.

In cases where this happens, the DAFNE Graduate Group will then look to confirm this information through Freedom of Information requests to the CCGs and Trusts involved. This then enables a campaign to be started to try an change the decision, as the information is then in the public domain.

JayBee and I have been doing this for James Paget over the last 6 months, but without success (so far). The DGG are now ready to start campaigning on the other centres listed above. If you're a patient at one of these and would be willing to help in a campaign against the decision, then please contact me through this thread, by a persoanl message in dafneonline or by e-mail at duag.uk.@gmail.com.

Many thanks.

JayBee DAFNE Graduate
James Paget University Hospitals NHS Foundation Trust
764 posts

To confirm, the CCG of my area have described the new education course as "our new expanded Intermediate Diabetes service" which doesn't describe much, and my current lead DSN is telling me that the new course is apparently like BERTIE.

Also, the Chief Executive of the CCG has told me that it is not under DAFNE:
~ after a diabetes service review, it was apparent that DAFNE had very low levels of uptake and that the delivery of care from single DSN running clinics in primary care was well received by patients and GPs. The CE went on to say that there were challenges due to capacity being restricted so patients' benefits were limited under the current system.
~ To address these issues, the CCG has started working with the James Paget Hospital Foundation Trust to develop a new model of care to accommodate the single DSN in primary care better to provide more benefit to patients. The idea being that they're closer to patients' homes.
~ These changes include incorporating a structured education programme that is not DAFNE, but it will incorporate themes and subject matter that is covered by DAFNE. Support will also be available to DAFNE graduates in order to "maintain improvements". He goes on to say that the new education programme will contain the same content with regard to dose adjustment and diet but will allow for some greater flexibility in the manner of delivery so more patients can benefit from the same learning outcomes I described in my initial correspondence to them which Peter helped me write.

I personally am not thrilled about these changes at all considering my GP surgery have always directed me to my DSN team at the hospital because they have continuously admitted that they don't know how to help their patients with type 1 diabetes with their issues due to being too different to patients with type 2 diabetes. Based on correspondence I have had with my lead DSN and new hospital consultant, it's quite apparent that they're keen to wash their hands of me and be super dismissive, instead of being helpful with dealing with my raised concerns - including my GP surgery's track record and these planned changes from the CCG coming into play.

JayBee DAFNE Graduate
James Paget University Hospitals NHS Foundation Trust
764 posts

Just saw this today. My experiences with my care team right now make some more sense.

http://www.bbc.co.uk/news/health-37943379

Absolutely disgusting.

Marie Murphy DAFNE Graduate
Glasgow
2 posts

This is just so sad and disappointing. Dafne was the first diabetes education I had in 22 years of being Type I. It is also the first time in 22 years that I have been shown any respect and compassion from medical professionals in treating my diabetes. After Dafne I changed from my local hospital to the Dafne clinic. I have to drive an hour to get to appointments - I don't care because I know I will be met with understanding, joint problem solving, accurate information and a compassionate attitude. Previously, I actually found it emotionally and psychologically traumatic to attend the diabetic clinic. I was chastised, criticised and treated like a four year old. It is not just diabetics that need education, but also the professionals who are dealing with them on a daily basis. A little basic psychology about how human beings respond to managing a long-term health condition would go a long way in clinics. Funding will always be an issue - this is something worth fighting for.