DAFNE in peril at the Wirral

I have actually moved slightly out of the area from Arrowe Park now, but caused a bit of a fuss with my new doctors and the hospital by refusing to change from the care of Arrowe because of DAFNE - which they don't do in Chester. I guess if they do withdraw DAFNE I may as well just change to being under the care of my doctor's surgery, which is how they care for Diabetics in my new area, and carry on following DAFNE on my own. Seems a shame to have to go it alone but at least I will have this forum and my good friend Becky to help me!

Hi Clare

Its a shame that after all your trouble to ensure that you continued to get a quality service from the Arrowe Park team you are now having to accept a situation where you no longer get support of DAFNE trained staff.

Perhaps a letter to the the Cheif Executive at Arrowe Park, letting him know that you are now considering moving your care elsewhere as DAFNE is no longer available would be help to highlight the situation further.

I have recieved the following response from somebody at Wirral PCT.

Dear Mrs Nicholls

Thank you for your email dated 20th April 2009 concerning the decision towithdraw funding for the DAFNE course.

I apologise for the delay in responding to you. Owing to a misunderstandingI was under then impression that the matter was alreday being dealt with.Please accept my apologies for the lack of communication from ourselves.

I can confirm that your concerns have been passed to the Assistant GeneralManager for Medicine and that I have asked for a full response to theissues that you have raised. I will contact you as soon as this has beenreceived.

In the meantime, thank you for bringing this matter to my attention. I wasvery sorry to learn that a course that you have found so helpful andconstructive is to end and I hope that the Trust will be able offer you assatisfactory alternative. Again, I shall contact you as soon as I have anyfurther news.

Yours sincerely

Jonathan Eke
Complaints Manager
Risk Management Department
Wirral University Teaching Hospital
NHS Foundation Trust
Tel: 0151 678 5111 Ext: 2615
Direct Line: 0151 604 7660
Fax: 0151 604 7041

With regard to the response from the Complaints Manager at Wirral Teaching Hospitals, the key question is whether they provide evidence that the alternative course they are planning to offer is of the same high quality and with the evidence base to support its use (as per DAFNE) and can it meet the 5 criteria required to meet NICE standards for Structured Education? Or is it just a "satisfactory course" and if so what do they mean by satisfactory?

Hi everyone!

I've just had this response from Julia at the PALS office. See what you think fo this one!! I personally think I have been fobbed off!

Dear Rebecca,

Thank you for your emails, sorry for not getting back to you sooner. JonEke passed your enquiry onto one of the Medical Assistant DivisionalGeneral Managers who has advised that following a review of the 2 programmes of type 1 Diabetic training that the Trust Diabetes team deliver( DAFNE and WHISTLE) the Medical Divisional Board took the considered decision to stop DAFNE but continue to deliver WHISTLE. This was based onthe evidence that the 2 programmes offer the same course content, with similar outcomes. I hope that this answers your query but if I can be of any further assistance please let me know.

Kind regards
Julia
PALS Office

Thanks for the update Becky. I've heard nothing on my complaint. I wonder if they could provide us with the decision criteria they used to say that DAFNE and WHISTLE (anyone heard of this?) are the same.

I'd almost be willing to put money on it (not that I have any inside info or money - I live in the West Midlands!) that WHISTLE is a BERTIE-type course.

The word similar should have been used rather than same but then the lady at the PALS office won't be a corporate lawyer I don't suppose, LOL

Interesting that they should run the two side by side - obviously the usual funding issues.

In any event if you or anyone is still going to that hospital you will still see the same docs and nurses as previously, so they will still all be aware of exactly the training you have had and the principles thereof (and the principles are similar for both)

Any formal training given to diabetics must follow all the guidelines specified by the NHS - they haven't changed. If diabetes treatment moves forward as it does all the while and course materials/content are changed significantly - then it all has to be agreed by NHS centrally before DAFNE, BERTIE or anyone else can deliver it to us in the first place.

However one thing that occurs to me as a Patient is, what ongoing support do DAFNE participants actually receive directly from DAFNE - surely the ongoing support and info is still down to the educators - the DSNs, doctors and dietitians, seeing the patients day to day?

When you move out of area you get whatever you get in the new area and if they don't support it, you just don't get it - whatever it is - HRT after a total hysterectomy is a very personal example a) I used to get implants b) including testosterone - I moved from Worcestershire to Coventry and was told they didn't believe testosterone has any part to play and anyway they didn't do implants, I would have to have patches. Hang on says I - I'm a naturist, can't wear HRT patches in sunshine, they don't work! After initial disbelief on the part of the GP (great stuff, he doesn't even know the facts about the drugs he prescribes?????) Having looked it up, which confirmed my statement he shrugged his shoulders and took a long long time finding some tablets he was willing to prescribe, which he made me stop taking in my mid-50's as he said I would most likely die early of heart trouble, being a diabetic.

So it's a postcode lottery anyway, diabetes is no different to anything else you or I might have or get!

if the powers in charge thought about it they would see that in the long run the DAFNE course may save a lot of money as well as helping Type 1 diabetics.
I learnt so much on the course and found out lots of things i was doing wrong
Its better having plenty of time to discuss and learn things rather than 5 minutes with your doctor who is under pressure to get through patients quickly
To me its should be compulsory like in Germany
i am using less insulin which is a saving and if my control is better i hopefully will require less treatmeny on the NHS.

Hi All,

Just a quick uodate on this, last week I went to see Julia the Dietician who helped to run my DAFNE course and she told me that the decision has now been made to run neither the DAFNE or Whistle course, but to put something together themselves based on the same principles. Julia said she was aware that I had emailed about it and seen what I had written, and we agreed what a shame it is that no more Type 1s on the Wirral will be able to attend the life changing course, but it appears to all be down to funding. My treatment and support will not be affected for the time being as the dietician and DSN are already trained to help me, but I'm not sure what would happen if they were both to leave and be replaced by others without training in the future. Let's hope they don't leve hey?! What a shame for the Diabetics who did not manage to get on the course.

Its a terrible decision but what happened to the complaints made? Did anyone ever get a reply from the Trust?