Patient voices: A patient's personal experience of acquiring the skills of self management

Medical background

"First diagnosed in 1984. Despite having a parent with diabetes mellitus, there was still the usual shock associated with confirmation of diagnosis, ranging from denial and moving towards reluctant acceptance. Initially control was difficult with a combination of diet and metformin, with a change to preloaded human insulatard pen injection, which brought greater control and mental uplift. Further medical problems were calcium overproduction and a malignant melanoma; both were successfully treated by surgery. And 21 years on, and I am a fit, healthy, active and contented 72 year old, with no associated problems (eyes, heart, kidney or neuropathy).

Supporting information

My early experience of diabetes was with my mother, who sadly 'enjoyed' her diabetes, subjecting family to every detail relating to her 'illness', boring everyone with the minutiae of her blighted life. This led me to the desire for self management, with only close family and friends knowing my diagnosis for many years. I was determined to lead a normal life. There was the familiar juggling act of family, friends and high flying career with tests, assessments and appointments all coming round frequently. With the support and understanding of the health professional team, long before the days of expert patient programmes and critical friends, together we embarked on a programme of self care, knowing that the team were always there to respond to any call for help or information. It worked. For my part, I ate healthily, swam daily, tested blood sugar levels and kept all official appointments regarding eyes, feet and teeth, also communicating with the DVLC regarding my driving licence.

Membership of the North Bradford Primary Care Trust Consumer Council and a contributor to the NPDT project provoked reflection on living with diabetes, and has caused me to think about other diabetic patients. We currently meet regularly.

Self management highlighting the principles of good practice

This has been realised through the encouragement of my doctor who accepted what I wanted, self management. In surmounting bouts of self doubt regarding this desire, I had to evolve a mechanism which enabled me to focus. This solution came with words, and in concentrating on these I became subsumed and mentally refreshed, spirits lifted, doom and gloom disappeared and normal service resumed. It sounds ludicrous, but in the written form its help to me has been great. This is using the word diabetes as an acronym in itself in developing greater understanding. I hope it helps you too.

Disease - no. It is a condition that needs disciplined management, in the face of shortage of money.
I am me, an individual. What may work for others may not be right for me. Work out your own solutions and ask for help where needed.
Attitude which needs to be positive and incisive. There can be no room for self pity or feelings of guilt.
Balance. Say no more often, and keep working at it.
Education: Be a sponge soaking up every bit of information from every source possible. Sources such as the health care team, leaflets, magazines, the internet, CD roms such as the Multi Ed Diabetes Programme. Be selective and discard what is not useful for you. For example, at my age a cure is still years away.
Team work: Utilise the full range of resources available.
Experience - capitalise on your own expertise. I know when to adjust food or insulin intake. In 21 years I have never had a hypo or hyper. Everything was explained to me in words I could understand, and I am still able to recognise mood swings and symptoms.
Support from family and friends. I am a non-smoker with restricted alcohol intake, except the occasional glass of wine. This is completely respected. If a meal is late, a biscuit is supplied.

For me, mental health is as important as physical health. A sense of humour helps and I can laugh at myself going through these words and phrases. They change, B becomes binge and T for tummy bulge or tone (the lack of it) at Christmas. You can always find something to get you through the dark moments; treats and rewards are balanced against carrot and stick, with a little bribery and corruption thrown in. I'm sure all patients are like me - I cheat a little!

Patient pathway

Prescribed medication (four months supply) at a time. This has changed little.
Insulin, aspirin and simvastatin (no cholesterol problems) plus a flu jab.

Bu, out of the blue, perhaps related to the celebration of my golden wedding anniversary to my beloved husband, I encountered a big problem. I developed needle phobia. I could just manage insulin injections, but the finger pricking device and I became sworn enemies and this resulted in the inability to measure blood sugars.

The solution focussed support I received is an excellent example of good practice, and how it led to shared decision making. Open, direct and honest discussion together with counselling from the diabetic nurse and diabetic clinical psychologist was welcomed. No pressure was exerted regarding 'finger pricking', and my decision to decline was accepted. Continuing on the self-care principle, I considered it was my responsibility to generate solutions. Gentle monitoring took place but six months later, this problem went just as it had appeared, without any warning.

I do appreciate that the doctor perceived my need to solve this particular problem, whether this was arrogance or a self esteem issue, their response and the supportive presence of the team at all times were essential.

Patient problems

Seven years ago my husband was diagnosed with Alzheimer's disease. Since then, my blood sugars have tended to yo-yo. Stresses generated as a result of caring 24/7 for a loved one are enormous and have a devastating impact on all aspects of daily living. Being a carer with total responsibility for another person, with finance and household responsibilities and no end in sight to this is often a confusing and at times bewildering journey, incorporating massive change.

Untrained, unpaid, undervalued and under resourced are words that easily come to mind. There was no reproach from health care professionals at the wildly fluctuating HbA1Cs, just helpful and consistent encouragement. The second blow came with my husband's diagnosis of bowel cancer, when the requirement for a truly holistic approach was needed. The team that supported both of us were there constantly, day and night and have my respect and deep gratitude.

Principles of good practice

As recognised by a patient without any health professional or medical knowledge:

development of the relationship over a period of time bringing about mutual trust (seeing the same people is essential, and under one roof)
time. Appointments are dictated by the length of time needed
provision of appropriate information, given in a timely way and at the right level of understanding
clear explanations leading to informed choices. A good example of this is after 15 years of treatment, why I do not need to take gliclazide to supplement insulin
shared decision making (early discussion on what we should do when my present insulin pen is no longer available next year, and consideration of changes which affect me when the new pharmacy contract becomes a reality)
forward planning with appointments to ensure that I am kept on my toes
individuality. I am regarded not as a number and I am treated with courtesy, even if at times I express unconventional views.

Take home message

A success story, from a patient voice. This is made possible by effective team working between patient, family and the health care team. Things never remain static and adaptability to change is essential. Whilst not an easy path at times, I have a positive experience and strongly advocate for the principles outlined above. These have all been made available to me, and I am conscious of my good fortune. For those with a different story, who do not have the same belief and shared optimism, don't be afraid to ask for help, I do believe you will get it."

For other stories about experiences of diabetes: go to the stories menu.