Action plan

Sometimes I worry that I’ve completely exhausted blogging about type-1-diabetes and eating disorders to death. But then when I can’t sleep at night my mind won’t shut up; it’s over thinking all of the things that I haven’t said, niggling doubts and grievances I feel I need to let out. I just hope nobody reading these blogs is sick of my rambling!

Type 1 diabetes is always there, canoodling with anorexia, providing me with the fall back insurance tool of being able to manipulate my insulin doses to control my weight.I fear hypos most of all and struggling to accept the basal adjustments my specialist nurses urges me to make. It’s still a constant battle to stay attached to my pump, and it’s disheartening to still hear ignorance and judgment on both type 1 diabetes and eating disorders wherever I go. The combination of the two still seems to be a wildly foreign concept to most members of the public that have no personal investment in the issue.

This is still frustratingly the case even after a number of notable print and online articles that have been published over the last couple of years on Diabulimia and the prevalence of disordered eating in individuals with type-1-diabetes. The brilliant documentary “The World’s Most Dangerous Eating Disorder” which was aired by BBC Three last year led to widespread acclaim and we were so pleased. For a while, with a surge in our website traffic and social media interest, it seemed like it could be a major breakthrough.

In retrospect it merely splintered the glass surround which makes it easier for outsiders to see through but the other side which means options of treatment and true acknowledgment is still so unreachable. This despite coverage of far too many unnecessary death and statistics revealing staggering mortality rate that prove that those with T1-ED and/or Diabulimia walk shakily close against the edge of a tall building every single day.

Yet the reaction to that reality is quite predictable a lot of the time, still: “how stupid can they be? How difficult can it be to just inject if it’s a matter of life of death? Don’t they realise how crazy they are to do that?” and oh of course, there friend or relative has type 1 and lives a healthy life, their diabetes does not really affect them at all!” The eye rolling and that frustrating and wholly misjudged that is still used by clinicians: “non compliant.”

There has certainly been positive change lately and that is an achievement, small feats that add up like another stone to the fortress walls and chip away at attitudes that ultimately need re-education. More of us are asserting ourselves, challenging stigma when we hear it.  Some health providers have really stepped up and trained themselves and their teams (whether that be diabetic clinics or eating disorder units) as best as they can in the shadow of NHS funding cuts. On a wider level there have been conferences and numerous new research studies on the disorder.

Widespread discussion on the importance of the right language used within healthcare settings has been a hot topic on social media just recently. Twitterites Renza/Diabetogenic (@RenzaS) and The Grumpy Pumper (@grumpy_pumper) have been fantastic advocates on this matter, as well as Dr. Partha Kar (@parthaskar) and a handful of other HCP’s, all of which should be applauded. I only hope that this evolving dialogue continued to spread further afield beyond the tight knit diabetes community that is mostly found on Twitter or\ Facebook.

We are shouting, hollering.  Louder now after some people have begun to notice, to react, largely as a result of the documentary. Still, it can be entirely frustrating and exasperating.  It can often feel like you are left with nothing but a sore throat and strained voice as the people that should be listening walk away oblivious. It’s hard not to feel bitter, to dwell and let resentment fester.

Hope can fuel a surge in determination one minute, almost excited by the common goals, the shared anger and upset, and that camaraderie found among a group of fellows with type-1-diabetes. It can be a fierce energy that rises up and bounces back and forth with re-tweets and the swapping of blogs that for the most part, are completely spot on and relatable to you, in at least some parts.

That understanding, compassion and sense of community is truly valuable, it means we know we can fall down and be held back up. That we can feel comfortable to rant and moan about unpredictable sugar levels, neuropathic pain or even giggle over the humour of common #diabetesprobs. Plus those diabetes memes which can be hilarious to us, (well me anyway! Perhaps I’m too easily amused,) but absolutely baffling to those with functioning pancreases. I’ll never forget sending a friend some of those “diabetes cat” images and protesting about how funny they were. On the contrary, she was completely baffled and the humour I saw didn’t compute to her one bit. Not her fault at all, but hey a fellow diabetic would probably find them as funny as I do.  Is there anyone with type-1-diabetes that can’t appreciate the thought of Hansel and Gretel style blood test strip trails and those don’t-give-a-fuck-attitude ee cards (see below!)? Laughing is a good remedy.

Friends and family can be amazing when they try to appreciate our daily struggles and be compassionate, but the fact is that only we can know what it feels like to deal with chronic and largely invisible illness every day, every minute and every second without any reprieve from it. For me at least, despite a sense of patience and the fact that I know I am cared about, it is still all too easy to detect a sense that I am a miserable bore when I talk about diabetes woes. I’ve been told that I am obsessed with my own disease and need to find other things to focus on by so called friends.  I’m always complaining, and there’s always some medical pain I am suffering with. It makes me feel like a huge drama Queen and hypochondriac.

There is some truth in it, in that yes distraction can be good and thinking about your problems can make you more miserable. But the reality is that this illness never relents, and it can’t be ignored. The control it has over our bodies and our minds is like a swarm of hovering gnats hovering around us as we stand in a room with the windows bolted shut. You can swat them away but you’ll never catch and kill them. The only way to breathe is to let in some fresh air, and give them a way out. It’s not fair that we should be told to ignore the biting to the back of our necks when it just means we’ll be left covered in a rash of sore red welts. Why should we be ashamed to vent, if that is something that helps relieve the burden and ache of it all a little?

So I may have gone on a bit of a tangent here, down a rabbit hole. But I do have a point ultimately and that is the urgency of some real action. Awareness is always positive but it isn’t enough, especially when it is rarely put out into the public sphere. We need strategy, we need government action, and crucially we need the godamn media to sit down and pay attention for once. They seem to be completely deaf, the newspapers anyway, some more guilty than others of course. But every time there’s a ridiculous headline, they lump type 1 and 2 together or suggest we cure ourselves with okra, cinnamon or a better sleep routine, we make a fuss and call them out, sometimes they apologise and then a few weeks later the exact same kind of thing occurs. It’s blatantly disrespectful and insulting to be placated and then blatantly ignored for the sake of causing a reaction or even a moral uproar to stats on the amount of money diabetes care is draining from the NHS. (And yeah, better care and earlier interventions=less hospitalisation and less expenditure, isn’t it a no brainer?!)

I am saying all this but do I have any idea myself? Well yes, I do. First of all with the papers - as a DWED representative I am challenging myself to call the big wigs at some national papers and confront them on their failings. Starting with the Daily Express, yep. So wish me luck, right now a frustration is motivating me but I may want to hide scared tomorrow. Which is why I am stating this here: I will do this. I will record those calls and I will report back in a later blog.

Second is a project where you all can chip in and put your case forward if you wish. When I spoke to (the truly amazing) Norman Lamb in May for a recording which is uploaded in our members area, he offered to take DWED’s case forward to Jeremy Hunt and have it raised in parliament. This would be in the form of a letter that we will address to Jeremy Hunt that will specify just how crucial it is that people with T1-ED and Diabulimia have access to better care, which can be done with the shuffling of money, with training across the boards, more knowledge given to GP’s, AN OFFICIAL DIAGNOSIS. It may fall on death ears, but it’s worth a good damn shot.

What we need from you are testimonies that we can add to the letter. Real life truths from people with T1ED that want to push the message that further change is needed NOW, those that feel devastated and worn down, and let down by a lack of adequate support services. Submissions from friends, family and carers would also be so helpful, especially as sometimes their loved one is unable to advocate for themselves, or in the worst, most saddening instances, they are no longer with us to do so.

I will be setting up an online form for submissions in due course and will amend this blog with that link. [4/7/18: Please find the submission form here.]

Keep fighting everyone, it’s cliché but all of you out there with type-1-diabetes, with or without an eating disorder, are fighters and probably so much stronger than you believe. Hold on. Let’s act on this. We are all in this together. Keep looking at the stars instead of blackened night’s sky. We might not ever be able to shoot for the moon but we can aim for the stars.

By Claire Kearns.

Specialist Treatment Pathway for Eating Disorders in Northern Ireland

DWED welcomes news that Northern Ireland’s Health and Social Care Board (HSCB) and Public Health Agency have introduced a specialist treatment pathway from those suffering from eating disorders. Significantly, acknowledgement has also been given to the high risk co-morbidity of diabetes.

The Eating Disorder Care Pathway provides access to a Guide for People Using Eating Disorders Services. This publication has been written by, and for, people who have experience of existing treatment, as well as their family members. The guide outlines what patients can expect from the referral process as well as including information on self-care and useful contact details. The pathway has also been developed with reference to the NICE clinical guidelines

An information leaflet for GPs, to support recognition of the signs of eating disorders and encourage a proactive approach is also now available. This includes a brief assessment tool for GP’s to identify problematic behaviour as soon as possible. In cases of ED-DMT1 or Diabulimia it is particularly crucial that prevention is introduced at the earliest stage to avoid devastating outcomes and complications. If a type-1-diabetic is omitting insulin they can be hours away from fatality even if not appearing obviously unwell and it paramount that there is an understanding of this by clinicians.

The guide identifies those with diabetes and eating disorders to be in a category of individuals in need of urgent appointments. It specifies: “If it is agreed that you need to be seen urgently you will be offered an appointment within 5 working days.” DWED regards this as particularly encouraging and hopes that it will be of benefit to our members in Northern Ireland that are in need of help.

Welcoming the introduction of the guide, Ann McCann from the Eating Disorder Association NI said: “The care pathway guide for service users and family members will help them understand that good treatment is available here in Northern Ireland, and signpost them to organisations that can provide information and support for them and their loved one throughout treatment and beyond.”

Minister of Health, Michelle O’Neill, described the new pathway as “very positive.” She said: “I’m delighted that the care pathway recognises that mental health care should have parity with physical health care... In December, I will be receiving a report which will outline how we might wish to develop eating disorder services in the future and I will also consider the potential benefit from an all-Ireland approach in terms of pooling resources and sharing expertise on the island.”

All leaflets concerning The Regional Care Pathway for the Treatment of Eating Disorders can be downloaded via the Health and Social Care Board website at www.hscboard.hscni.net/our-work/social-care-and-children/mental-health.

By Claire Kearns.

Don't read below the line

There’s been a lot of coverage relating to diabulimia in the press just recently. Certainly in light of how largely disregarded the condition has been until now, despite its staggering prevalence. It’s great to see such acknowledgment, from the BBC article that brought a tide of traffic to DWED and the Indy’s comprehensive piece, both of which used quotes from our director and founder Jacquelline Allan. That girl knows her stuff and it’s so crucial to be getting accurate information out there, especially after numerous past occurrences of grossly sensationalist reporting . The death of Lisa Day has prompted some of this. It’s disappointing that such a tragedy is the one thing that brings forth attention, when all our continuous shouting merely falls on deaf ears. But despite that I know her family are determined to bring awareness to this fatal condition that caused the loss of their beloved sister and daughter. In turn, the newly opened service at Kings College London which will treat type 1 and 2 diabetics with eating disorders is hugely positive news which has placed diabulimia under a spotlight.

However, traffic can result in road collisions. By this I mean loud voices of the misinformed and uncompassionate. Those people that will skim a story but have already formed a negative judgement from the headline. A judgement that they want to push onto anyone they can, but most of all those that they see with a spot of vulnerability.

The best lesson is to never, ever read below the line. But it’s that self-sabotaging nature in me, and so I need this space to rant a little. Even if I fear I may just be preaching to the choir.

Eating disorders are not a result of stupidity or ignorance. On the contrary ,it is a proven scientific fact concluded through various different studies that the majority of sufferers actually have a high degree of intelligence. I have never met anyone with an eating disorder that is not smart, some to the point of intimidation. Instead, I have met so many talented people through treatment experiences and online support communities. These people can be great scientists, artists, writers.  

It is often the case that people that develop eating disorders actually think too much. Minds full of numbers and weights and ratios are not idle. Instead, they are over-occupied, fixated, obsessed. If you bring type 1 diabetes into the mix, the need to be clued up on nutrition and the mechanisms of your body is pertinent. You do not have the option to avert focus from any of that, and diagnosis can be a hugely overwhelming time. Furthermore, with diabulimia, insulin manipulation is a not a simple equation.

Manipulation is often the fuel of an eating disorder, it feeds and sustains it. You can become someone you do not recognise, and do things you would never dream of as a healthy person with a healthy mind. Deception is never a game for the idiotic, it is clever and sneaky. You learn to lie with conviction and run rings around those around you. You become the master of trickery. All the while you are blind to the fact that a mental illness is pulling at the puppet strings attached to your limp feet, legs and arms.

It’s not a choice. It is not a decision made with any rationality. Someone with an eating disorder and diabetes is not choosing to not take their insulin just because they can’t be bothered or want to throw their toys out the pram (in this case syringes and test strips!) They are not just being ungrateful for that crucial life source which is now so luckily available. The discovery of injectable insulin to treat diabetics is meaningful to everyone that has to rely on it to survive. But with a mental illness, with an eating disorder, survival is not a priority. It’s also not just “another label” that can be lumped in with anorexia and bulimia when it has characteristics that require treatment to be specifically tailored.

The roots of any eating disorder are deep and heavy. It isn’t an illness that just sits in a shallow pool on the surface but it is all consuming river. It is not vanity, or selfishness, or a fad. It is not just about appearance. Everyone that suffers from an eating disorder will have their own stories to tell and different reasons as to why they developed one. Often these psychological origins can be tangled and extremely difficult for the sufferer to try and unravel. 

“All diabetics have to do to stay on top of their health is take insulin” read one comment beneath a recent article on diabulimia. Firstly, this shows a huge disregard for the impact of type 1 diabetes as it is about so very much more than that. Secondly, again, someone with diabulimia isn’t just a diabetic, they also have a mental health disorder, meaning they do not think logically or the way that any mentally well diabetic usually would.

Ultimately, all I ask is that if you don’t know about a condition such as this, if it’s something that seems beyond your scope of understanding, please do not automatically judge. Do not assume. Instead, listen, try to learn, have some empathy. You do not know the influence that harsh, unkind words can have.  We are not all delicate flowers and Dave or John from Manchester and Bognor Regis aren’t necessarily going to bring forth tears. Still, ignorance spreads like wildfire, and if someone we care about adopts a similar view, well yeah, that can hurt.

I’ll end this with a suggestion: Just don’t read below the line, especially if it’s The Daily Fail online.

By Claire Kearns.

Updated NICE Quality Standards for Children and Young People with Diabetes

Earlier this month the National Institute for Health and Care Excellence (NICE) released a set of new quality standards containing details that should become a major influence in addressing the current lack of care available to children and young people suffering from diabetes and a related eating disorder.

Their quality standards publication for 14th July provides recommendations regarding the diagnosis and management of type one and two diabetes for those under the age of 18. It also contains some important guidelines in relation to psychological and emotional health which DWED hopes to have fed into. We are so pleased to finally see this being implemented by NICE and duly hope it will bring about change that is long overdue.

Conclusions in the report were reached by local data collection and the 2013–14 National Paediatric Diabetes Audit. Results unsurprisingly concluded that individuals with diabetes were more at risk of mental health problems including depression, anxiety and eating disorders. This can be due to a number of factors such as alienation from peers, ignorance from the public and media, bullying and the fear of being different.

Eating disorder behaviours can often begin at an early age and although diabulimia may develop later, anorexic or bulimic tendencies are shown to start alarmingly early. This may often lead to the process of insulin omission in a type one diabetic. There is undoubtedly a link between body image concerns and the introduction of insulin in adolescents, not to mention the focus on food that becomes necessary to ensure steady glucose control.

The quality standard suggests that best practice would mean children and young people with type 1 or type 2 diabetes would have access to mental health specialists that understand the types of problems people with diabetes may have.  It specifies that a mental health professional should be one of the main members of the diabetes team.

Of course early intervention for all eating disorder cases is hugely significant as the sooner that an individual receives help the more likely they are to recover. Physical complications are also less probable, and with diabetes this can be crucial in preserving long-term quality of life. Devastating consequences of ED-DMT1 and diabulimia can be nerve damage, sight loss, kidney impairment as well as difficulties with nutritional absorption and digestion.

So what exactly does all this mean? In simple terms clinicians will have support in recognising and addressing psychological difficulties in the patients they see. Young people can speak up for themselves with backing of the NICE initiatives, and family and carers will also have the resources available to seek support on their children’s behalf if they notice any worrying signs. This will hopefully lead to the appropriate help being introduced sooner and give ED-DMT1 and/or diiabulimia less chance of digging in its ugly claws. It should mean fewer ambulances called, fewer hospitalisations and fewer deaths.

DWED can facilitate on your behalf if you feel you need help with the advocacy process and you are a subscriber for our preium services.  We can provide you with a downloadable fact-sheet which outlines the NICE recommendations and can be used in communication with your own or your child’s diabetes clinic, GP or nurse. This contains all relevant information concerning what clinicians should be providing in the way of treatment of mental difficulties. It will also outline what the NICE quality standards suggests and encourage health care professionals to address psychological concerns that they may be overlooking. We will support with relevant quotes from the Quality Standards publication to highlight any eating disorder specific recommendations. Additionally the document includes a detailed breakdown of the updated NICE Guidelines and Quality Standards for adults. By signing up for membership you will also be given access to monthly premium content.

Nice Quality Standards regarding long term conditions and another regarding co-morbidities and complex needs are also planned for the near future, details of which can be found in a spreadsheet which is linked via the NICE website's Quality Standards Topic Library. DWED hopes that all of these reports will include advice pertinent to the awareness, understanding and tailored treatment required for cases of ED-DMT1 and/or diabulimia.

By Claire Kearns.