Backtracking slightly, this is my blog for Diabetes Blog Week Day 2, for which the focus was: The Cost of a Chronic Illness - Tuesday 5/16
"Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?"
There's been quite a bit of media coverage and discussion on the dire state of medical care of those with chronic health conditions in the USA just lately. I’ve read a number of reports relating to people with diabetes having to resort to skimping on insulin doses due to the expense and even buying knocked-down, knock-off supplies through the black market. As a citizen of the UK with access to the NHS I cannot imagine the hardship of such a situation and find it difficult to fully comprehend. I won’t try to do that because I feel the only people truly at liberty to comment on it are those in the thick of it. All I can say is that I feel very much for them. It isn’t right and it isn’t fair. I very much hope that the situation will change.
Even further away, people with type-1-diabetes in third world countries don’t even have the resources they need to survive. Some won’t even get a diagnosis and will die painfully without any access to insulin whatsoever. T1International is an amazingly worthwhile charity that endeavours to help those people where they can. It hurts my heart to consider the struggle of those individuals. I know what untreated diabetic ketoacidosis feels like and I wouldn’t wish it on my worst enemy.
With respect to all of this, I am hugely thankful for the NHS, I must stress that. Most of all, that lifeline we have to be able to access our prescriptions without any cost at all is huge. A vial of blood test strips can cost upwards of £25 and with my erratic blood glucose levels, I can go through them quickly. That’s not to mention the cost of insulin itself, of pump supplies and equipment. Then there’s the option to be able to walk into hospital and be seen if we need to be, without an itemised bill arriving afterwards which lists every blood sugar reading taken, every nurse check and glucose urine dipping test. Yes we may sometimes have to wait, and yes sometimes we can be pushed aside when we need priority, but elsewhere there is simply no option of being able to walk in and that receive medical attention without a price.
The above is a disclaimer of sorts before I continue, to state that I am so they say ‘checking my privilege’. That said, I feel that what I have to say still deserves serious acknowledgement. I must speak of what I know.
An area where the NHS needs significant improvement concerns allocation of funds for the treatment of people with type-1- diabetes and a mental health condition, most significantly eating disorders. There is a fundamental flaw to be found in this area which means money is being wasted, flushed down the drain, often alongside a desperate cover-up of bleach, the stench of which is strong and lasting.
“In the NHS, when it comes to treatment for mental illness, you do not have any choice.”
This is what I was told by a psychiatrist that was overseeing my care as an outpatient at my local eating disorder service. I was on the verge of being sectioned if I did not submit to an inpatient hospitalisation. In agreement to this, I had found a facility that was trained in eating disorders and type-1-diabetes and would be willing to admit me with the appropriate referral, and had an advocate that helped me to stress the importance of this. However, this was not their go to route and so my view was dismissed. Instead, I was sent to the allocated unit that every patient was unduly sent to, the cheapest option.
The first day I arrived at that unit they did not have any needles on the ward to give me my insulin. They had not been trained and some of the staff were surprised to find out I was diabetic. 6 months down the line I was at the centre of a complaint concerning negligence and had been safeguarded by a whistleblower as a vulnerable adult. I had lost hope of recovery and felt traumatised by the entire experience. Now three years later, I still have nightmares about some of the situations I was put in.
On the flip side, while some of the health workers on that unit were downright ignorant and dismissive of my additional needs, others, mainly a handful of the nurses, were undoubtedly fantastic at their jobs. While overstretched and under-resourced, they did all they could, but they were just not clued up on type-1-diabetes and they should never have been put in a position whereby they had to try and cope without full expertise.
I am not the only one with a story like this to tell, far from. Those with diabulimia are routinely being ‘treated’ as those with more typical eating disorders. This is never going to work. There are studies that back up the notion that we need to be considered as having separate needs and that recovery must encapsulate care for both our physical and mental conditions.
I have heard accounts from those with diabulimia that are of a normal or even above ‘healthy’ weight that have been put on an anorexic diet. Many have suffered from oedema and have experienced rapid weight gain alongside flair up of complications such as retinopathy and neuropathy. All of this can be hugely distressing not to mention dangerous.
Other considerations readily overlooked may be the need for extra water, and the entire fact that to become better a type 1 diabetic needs to be MORE hands on with regards to acknowledging food intake, whereas usually someone with an eating disorder is encouraged to step back and become more relaxed, less fixated about what they are eating.
Changes have been made, but the bottom line is that funding is being tossed away when it could be carefully put into specialist care, the right care. Ignoring this makes a mockery of the fact that we have a national health service, and is an injustice to those people in other parts of the world that do not.
Returning to the words of my psychiatrist, I believe that everyone should have options and be listened to in a discussion regarding their own treatment. Mental health difficulties can happen to everyone. Having an eating disorder does not mean all our thoughts are automatically scrambled and become irrational, especially where medical knowledge of a condition we have lived with for many years is involved. Often we are the expert more so than the practitioner we are speaking to. Discussion and sometimes disagreement can be understood (yes, particularly when mental capacity may be compromised), but blatant disregard will automatically casts battle lines.
We are not just patients. We are not just statistics on a chart, a summary of our weight or BMI or HBA1C and we do not need a price tag around our necks.
We are people. We should all be given choice.