Psycho-social support - Closed

Momentum for the development of psychological support services for people with diabetes has gathered pace recently. It has long been recognised that there is a very high prevalence of clinically significant psychological distress in the population of people with diabetes:
• 20-30% experience significant depression
• Over 40% report clinically significant levels of anxiety
• Eating disorders are far more common in people with diabetes than in the general population

Psychological distress leads to non-compliance, and consequent microvascular and macrovascular complications, and should therefore be seen as a cause (and not merely a consequence) of diabetes complications. Notwithstanding these issues, it is perhaps people with diabetes themselves who have been most influential in identifying psychological support as a priority for service development. For example in a recent study undertaken in Northern Ireland, 1314 people with diabetes gave their opinions on service development priorities. The single most requested improvement, cited by 32% of respondents, was access to psychological support.

There seems little doubt therefore that psychological support for people with diabetes should be regarded as an area for early action. However discussion is required about how this aspiration can best be met. People with diabetes and diabetes professionals are invited to consider issues such as:
• How should psychological support be delivered?
• By whom?
• Would people with diabetes prefer ‘talking’ services or ‘tablet’ services?
• Should psychological support be provided as part of general diabetes care or should people be referred to mental health services?

Dr Mark Davies
Consultant Clinical Psychologist
Belfast City Hospital

It is comforting to see that psychological impact of living with diabetes is finally recognised and accepted. When my bubbly, little daughter with Type 1 Diabetes became rather down-cast at the age of 8 or 9, denying the existence of the illness she had developed soon after her 5th birthday, the diabetes team had very little to offer, apart from giving her some leaflets to read and colour, with the promise of some prize if she did them! She had to ask for the prize - as they had forgotten the whole promise!
When she suffered from severe hypos on the twice daily mixed regimen, started to fit regularly, and put on a lot of weight from the hypo treatments and protective snacking, her joy of life and enthusiasm for future plummeted even further. Her Diabetes Consultant and the DSN told her that she should spread less butter on her toast, not to cheat on hypo treats, and just add more insulin in, as her fructosamine levels were not good! The male consultant blurted out in front of several adults, 'Are you sprouting yet? Your puberty will be late if you do not take enough insulin!'
Having somehow survived those nightmare years in the paediatric clinic, better prospects were ahead in the Adolescent Clinic. The Consultant was the first person to empower our daughter by saying that he was not able to cure her disease nor take control of it, but he would be happy to offer his resources and share them with her. From that moment onwards, our teenage daughter started to take control of her diabetes, to try and solve the mysteries why her blood sugar levels were swinging high and low, how she could regain some hypo awareness, how to lose weight safely. Within a few years, we saw a confident, young woman who would learn anything about her diabetes (no systematic education ever given by the team) - which no longer was a loathed illness, but 'just a condition you had to learn to live with'.
When at university, she had the misfortune of developing another auto-immune condition, idiopathic thrombocytopenic purpura, which nearly lost her life. When hospitalised and extremely ill, before her final exams and dissertation deadline, not one of the professionals at the hospital ever asked how she was feeling, coping, suffering... And she was herself about to graduate in the 'caring profession'!
After years of pleading for a pump, she eventually got one - and what a difference! The pump company trainer has been the best professional to listen, to support, to be accessible 24 hours a day! This man enabled our daughter and her newly wedded husband to get initiated into pump therapy, to problem solve what could be behind her rather unpredictable glucose fluctuations - all at the time of their wedding and subsequent honeymoon!
I am convinced that children who develop diabetes are the strong ones; otherwise they would autodestruct in the maelstrom of this cruel condition. It is time - in fact, past time - that all professionals caring for these special people were trained to understand and to empathise with the stresses and distress caused by diabetes. It is not a task that should be delegated to a psychologist - let alone Mental Health Services!!! This would only double the stigma and hurt suffered by these courageous people.

L.King

Dear Anne,

If your blood sugars were normal round the clock do you think that you would feel more in control?

It is indeed a fact that hypoglycaemia can affect the brain cells adversely and also that persistent high blood sugars can affect nerve function and short term memory.

These are the physiological effects of abnormal blood sugars.

There is also the psychological issues that come up which you have described clearly.

Many diabetics feel frustrated and helpless when they do what they are told by health care professionals and they do not get the results they expect.

You can have control of your blood sugars, Anne, but only if you are willing to put what you have learned from the well meaning but incorrect advice promoted heavily by NHS Dieticians.

To normalise blood sugars in type one diabetes you need to understand that the more carbohydrate you eat, the higher your blood sugars will go. They higher your predicated blood sugar the higher the insulin dose you have to administer. There is about a 30% variability in the action of injected insulin from dose to dose of the same amount at the same site. This, and variation in what you eat and how it is digested in the gut and other factors account for the unpredictable effects.

My son Steven is a type one diabetic who has normal blood sugars and a hbaic of 5.1. I have had him on a restricted carbohydrate diet since diagnosis 18 months ago.

As a first step in getting well I would recommend that you see how other diabetics with normal blood sugars achieved this by visiting Dr Richard Bernstein's internet site.

Dr Bernsteins diabetes solution typed into google should get you there.

Best wishes,

Dr Katharine Morrison.

Dear Bill,

I am sorry that you have lost such an obviously valuable member of your team.

Many parents would like to have access not only to committed psychological help especially when they have toddlers and teenagers but also to other families who have gone through the same experiences.

Why are these basic networks not being set up?

Why is a psychologist who is getting good results getting the sack?

What are NHS administrators actually doing?

Katherine

I'm with Ann all the way. There's a lot more to it than carbs v insulin. My levels swing hugely - high teens to hypo - often very quickly. Exercise is the prime culpprit. Yet the same exercise on two different days may produce astoundingly different effects.

And even with most of the obvious variables taken out, my levels can swing wildly – shoot up with no carb intake against a previously steady base and not having gone too long since eating, or drop for no apparent reason. Emotion plays a part. Ambient temperature. I'm sure there are many other factors. And I find I'm getting what I presume are liver dumps for no obvious or consistent reason.

And they'll all play differently for different individuals. Especially those with irregular daily routines.

Having said that, I agree that all logic goes against the NHS dieticians. You are probably aware that they are pretty much of a standing joke on diabetic newsgroups such as ASDUK. And I'm sure your low-carb diet can make a difference, even a big difference.

But I do bristle at you assertion that "you can have control... if...". To my ear it has the ring of "if your levels aren't right, then it's your fault. You're doing something wrong."

There are certainly things that may help most people get better control most of the time. But I doubt there's no one magic solution for all individuals, as your dietary advice seems to suggest. And no individual can possibly measure all the variables at any time, particularly if they're sensitive to factors such as temperature, exercise or stress levels.

I don't know if you're a medical doctor, but if so it is refreshing to hear some questioning of the established wisdom. May many more follow your example in questioning, and by keeping open minds.

Terry T1 DX July 2003
18 Lantus, Novorapid as determined by meter, projected exercise, time of day, stress levels, carb intake, season...