Your stories - diabetes

Story 1: Diabetes - 'DAFNE course changed my life'

Patient was diagnosed with Type 1 diabetes when she was 12 years old. Back in the 80’s she had very poor support and after a consistently poor experience with a consultant did not go back to the hospital for follow up for 15 years. She was given very poor advice and information by this particular consultant when he changed her insulin resulting in severe hypoglycaemic attacks. This ultimately resulted in a fall and broken leg. She was followed up by GP for her insulin prescription who persuaded her to be referred back to a hospital consultant, Dr Soloman for review of her diabetes management. She had a positive experience this time and Dr Soloman referred her to the Dose Adjustment For Normal Eating (DAFNE) course. There was an 18 month waiting list but the consultant spoke directly with the team who agreed to prioritise and she was offered a course within 6 months. The course is five days and the patient described how it changed her life.

Good experience

  • DAFNE course - fantastic nurse and dietician running the course. Really felt listened to and for the first time in over 40 years not told what to  do. Patient felt she had  a say about her diabetes management.
  • As a result of course, patient has lost significant amount of weight and continues to manage this well.
  • Insulin dose reduced by 65%. 
  • Over the moon with the support the course has given her.
  • Has valued the provision of a mentor to contact with any concerns.
  • Has developed friendships and support networks with other diabetic patients.
  • Diabetic consultant who listens and effectively helps to manage the diabetes.

“Before the course I thought this is my lot in life, it is not going to get better but the course has changed my life.”

Story 2: Diabetes - 'I have been given my life back!'

After visiting my GP with blurred vision and constant vision thirst in 2005 I was diagnosed with type I diabetes. I was 55 years old.

I spent four days in hospital being rehydrated and undergoing various test. I returned home with a reasonable understanding of my condition, and initially had about three months backup support from the diabetic team to get my insulin dose right. I ended up on 3 units night and morning injecting an insulin mix.

This regime and dosage continued for the next four years, with one visit on an annual basis for my diabetic review. Then my HbA1c started to creep up. My diabetic nurse told me to change my injection sites to improve the rate I absorbed the insulin. I was given a blood form and told to report back in three months’ time.

This continued for approximately three more years with various suggestions as to how to bring my BG into range, all to no avail.

I felt guilty and despondent, thinking I was doing something wrong.

Then a friend told me about Dose Adjustment For Normal Eating (DAFNE). Her mother had attended a course and it had really helped her. So at my next GP visit I asked about going on a DAFNE education program, but was told it was very popular, and there was a long waiting list. I requested more information, but they did not seem very well informed. I continued to request a referral to DAFNE and my BG continued to roller coaster over the next two and a half years.

Eventually in July 2015 a diabetic nurse agreed that I should be referred to the DAFNE program and I could expect an appointment for assessment. After three months, having heard nothing, I rang my GP to make sure I had not dropped off the radar. They told me I was still down for referral.

In December I was sent an appointment to see a diabetic dietician. I had no idea why, but went along, and after a brief discussion, she told me that she worked with the DAFNE team for my area and that she would contact them and explain my situation.

Within a week I had been to see the DAFNE educator, and after a very informative and positive meeting was given the first available DAFNE course appointment, which was in January 2016.

Having graduated from an extremely factual and encouraging 5 week course I now have control over my condition, not the other way round. I no longer have 1 or 2 hypos a week. In fact I have not had a night time hypo since attending the course. My BG to carbs. calculation continues to improve week on week. Should I have any problems at all I have online backup and my educator’s phone numbers. Their dedication is to be applauded.

Quite simply, I have been given my life back!

I think that all type 1 diabetics should be offered the chance to attend a DAFNE education program, and diabetic nurses at GP surgeries should be made DAFNE aware. In the long term I think it would save the NHS money.

My only problem now is trying to get my GP surgery to amend my repeat prescription to suit my current regime.

But that, as they say, is another story.