General

What is living with diabetes like?

Although drugs and medicines are free to patients with diabetes there are still extra costs to be borne. For example:

 Personal and travel insurance
 Blood Glucose Meters

Insulin dependant patients are locked into worrying about food content and insulin intake. Getting insulin levels right is empirical, that is to say, when insulin is introduced or changed the initial dosage set by a consultant it requires the patient to test blood glucose levels and alter the dose to suit.

There has been, in the last few years, a concern for patients, with diabetes, of restrictions, introduced by Government, such as limiting the numbers of blood glucose test strips. There has also been a government driven limitation of only 1-month’s supply on a doctor’s prescription. This means I need to get 12 prescriptions each year instead of the 4 per year I used to have.

Just because I have diabetes does not mean that all things that affect my behaviour and me are related to it.

Consultants frequently talk down to patients and all patients have suffered this. Consultants must realise that when they have finished for the day at work they can forget about diabetes. The patient is there 24 hours a day, 7 days a week. I cannot get support from my local diabetes centre when I need it due to lack of properly trained Diabetes Specialist Nurses there. You will never get hold of a diabetes specialist doctor out of an appointment time.

I have had in the past had difficulty in keeping my blood glucose within the limits we would all like to achieve, consultant and DSN reaction is usually that I have not been trying hard enough. Despite this type of attitude I now have got a solution to this by using Subcutaneous Insulin Infusion Therapy; this was not without a struggle with consultants who did not want to listen.

Is there more that Government could do to support people with diabetes

Apart from funding more research into finding cures for Type 1 and Type 2 diabetes there are things that can be done.

1 To my mind there are therapies which reap big dividends in reducing problems which come about from diabetes such as kidney failure, heart disease, eye and nerve problems. Whilst these therapies are expensive in the short term they have large financial benefits in reducing the more expensive consequences of kidney dialysis, cardiac operations, blindness and amputations. An example of a therapy, which can deliver such savings, is Subcutaneous Insulin Infusion.

2 The zero rating of Value Added Tax for all drugs and materials used in the treatment of diabetes would reduce some of the costs. This list is not exhaustive; blood glucose test strips, insulin, needles, hypodermics, glucose tablets, insulin infusion pumps and their consumables.

3 Either Blood Glucose Meters are issued on prescription or the suppliers of blood glucose test consumables should be encouraged to provide them for free as do some of the insulin producers with their insulin pens.

4 Funding should be increased to find reliable methods of continuous non-invasive blood glucose measurement and coupling this with insulin infusion pumps to enable an automated delivery of insulin.

I'm sitting here 11.30pm, knowing it will be two or three hours before I go to bed, as my husband, blind for 5 years, high BP, nerve damage, possible kidney damage, autonomic neuropathy, won't go to bed as he is very depressed and feels like he is trapped in a black box with no way out. He won't go to appointments as he has no faith of trust in the medical profession. He hasn't been out since June (that was only because of chest pains and I got him to A&E). He has no friends left. I know he will be screaming out at least 2 or three times in the night scared like a little baby, calling for me to reassure him.
His anti-depressant cannot be increased until hs goes for a ECG - some hope! His itching is driving him mad, but too angry and frightened to go to see the Consultant. I'm left to deal with this with a minimum amount of help from the GP and DSNs because he won't have it.
This is because the service was so poor during the last 15 years and the education was very little, that he did not take the care he should have. Things have improved, but far to slowly, but there is still no help for me, I'm just expected to get on with it. My husband has all the complications of diabetes, but I have my life on hold as well. I thought the diabetes was bad, but it does not compare with the severe depression he is going through now. More support is needed, for the patient, the family, the carer.
My husband just wants it to all end and so do I. This is not the way his last few years should be, but he is so bitter and angry, nothing will help. We must get things right asap. Consultants, GPs and DSNs wake up, stop, look and LISTEN to your patients not just at their symptoms, they are the experts on their condition. Work together, make them want to come to appointments, make things more accessible, make them realise it cannot be ignored. It kills! and that's not just the patient, the whole family is affected.

I'm now Secretary of our local diabetes support group to try and make a difference to others. I will not let my experiences go to waste.

ELAINE
Carer of John, Type 1 for 15 years

In response to your 3 bullet points:

Yes the care on some fronts has improved for me, BUT THIS IS DOWN TO THE COMMITMENT OF CERTAIN STAFF RATHER THAN the framework.

No the Government are not committing sufficient funding to stop the complications that cost so much. In particular on going psychological/mental support for diabetics AND their carers/partners is almost criminally neglected - surely if a Consultant Psychiatrist and Diabetic Consultant say you need counselling, you should not have to wait over a year to access this - in Chichester this is the norm, and could, currently extend to 15/18 months.

Local Care: see above! Also protect the Diabetes Centre that is already here. Farming it all out "into the community" does not always work and there should be a mixture of types of access to a network of care and support.

Diabetes is for life: It affects every corner or your life and anyone associated with your life; No financial support is given for the high cost of good food, travel costs for all the appointments that diabetics are often involved in etc.

A local Buddy team just being launched (240905) locally has just basically had its finances slashed AND EVERYTHING APPEARS TO BE ABOUT MONEY................AS THAT IS THE CASE, BEWARE BECAUSE LACK OF INVESTMENT NOW WILL HARVEST HUGE ON GOING COSTS IN THE FUTURE.