Often it feels like preaching to the choir, with those that need to take notice still standing with turned backs.
Read MoreSpecialist 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.
This Months Membership Package
DWED Public Members: This month we talked to 3 patients about their experience on Eating Disorder wards. You can download these interviews as podcasts. We also release a comprehensive guide covering all NICE guidance regarding Type 1 Diabetes that we feel are relevant to us - Make sure that your team are following the recommendations! We also offer the service of approaching your teams with information and training offers.
DWED HCP Members: We also supply the podcasts of those who have experienced Inpatient care for their eating disorders. Director Jacq interviews Dr Pamela MacDonald on her recent research at the Institute of Psychiatry, looking at both Health Care Practitioner and Patient attitudes towards Diabulimia. We also highlight changes to the NICE Quality Standards, recently released and our interpretation of their use for our demographic and offer a new Linked in group for you to discuss T1 Eating Disorders with like minded professionals. We also offer a £50 discount on Training for DWED professional members and round up relevant research for you in a handy downloadable
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.
The Blame Game
I am sick of the blame that is constantly heaped on people with diabetes by media and society.
I am tired of being made to feel guilty for having a condition I did not cause.
Yet again today I spotted an article leading with the cost of diabetes to the NHS. The story mostly relies on statistics in relation to clinic attendance targets. Admittedly, it does in part refer to the impact of post-code lotteries and failures by specific departments to follow up on patients. Yet still, the majority of blame is always turned back onto the patients themselves.
It does not matter which publication this piece came from, as there will be more based on the same report. There doesn’t seem to be a week that goes by without one media source or another pointing their fingers at us. They total up the numbers: the hospital beds we are taking up, the nurses and doctors needed to attend to us and the prescriptions they must dole out to keep us alive.
Unfairly these figures are often based on the larger impact of type 2 diabetes upon NHS resources, and new stories will more often than not fail to distinguish the difference between type 1 and type 2 diabetes until after at least the leading paragraph or two. This is ignorant and misleading.
The fact is that type 1 diabetes is NEVER caused by lifestyle factors, and a significant percentage of type 2 cases present without any such evidence either. In turn, even if some type 2 diabetics do contribute to the onset of their diagnoses this is rarely with intentional fault. For example, being overweight or obese can be a cause of BED or overeating. Yes, a certain amount of responsibility has to be acknowledged but it is simply not as simple as having control or complete lack of. Mental illness can make you feel overwhelmingly powerless.
Nobody with full capacity over their actions would willingly choose this. Nobody thinks to themselves "oooh I am going to treat myself to the podiatrist, a poke and prod and the diabetes clinic and some laser eye treatment for retinoapathy this year. A few hospital admissions for ketoacidosis would be a nice break too."
There is always an underlying reason for "non-compliance" (that dreaded term some health practitioners love to throw around quite casually) beyond just laziness or stupidity. Neglecting to pay sufficient attention to a disease that can have such devastating impacts upon your own body; blindness, amputation, death, in my opinion always suggests some kind of psychological disturbance. Diabetic burnout, depression leading to disengagement and lack of self-care, anxiety related to hypo episodes, Diabulimia.
Oh, I am sorry for developing a chronic illness, and a mental illness to top it off. I am sorry I couldn't quite grasp the concept of having to eat the right things, and inject, and test my blood multiple times a day while maintaining full rationality. I am sorry Jeremy Hunt, for draining your pot of money.
Many individuals that suffer from eating disorders, whether that be alongside type diabetes or not, will already feel intense shame. Shame for their actions and habits, the extent they go to maintain and hide their illnesses as well as the hurt it can cause to loved ones. I am ashamed of myself and in reaction I use behaviours to try and deal with that, to stuff it down and to punish myself for unspecific crimes. Surely this is enough? Please, leave us be and let us try to heal as best we can. Media sources, try listening instead of berating us and colluding with the unforgiving whispers inside our heads.
By Claire Kearns
Unpredictability
Diabetes can be so very unpredictable.
We had a sweltering few days last week in England, and as always in reaction to extreme heat my blood sugars were soaring. It felt like it felt like my body was just guzzling insulin as I had to redose again and again via my pump, with little result.
More often type one diabetics can experience hypoglycaemic episodes when temperatures are in the red, this is because sweating increases both metabolism and energy. Diabetics are warned about the use of saunas and taking too-hot baths for this reason. However, others are like me with their bodies reacting in the opposite way by running high. I’ve even heard of some people having to double their basal rates during the summer, but of course there’s always that fear that you will then administer too much insulin and your sugar levels will then plummet through the floor.
I’ve Googled relentlessly to try and find out why I might be particularly susceptible to this reaction, but there’s not much out there. The only possible reason I can find is related to being dehydrated - which I am pretty much constantly. I found a page quoting Lori Roust, endocrinologist at the Mayo Clinic in Arizona, who says “When you’re dehydrated, you have higher concentrations of blood sugar because less blood flows through your kidneys. With less blood, your kidneys don’t work as efficiently to clear out any excess glucose (blood sugar) from your urine .” [everydayhealth.com "How Weather Affects Your Blood Sugar” Beth W. Orenstein. 6/12/13]
Still, it’s mainly a matter of guessing games. Even the diabetologists seem confused. The fact is simply that with type 1 diabetes there is often no rhyme or reason. This is something that non-diabetics (you know, the blessed ones with well-behaved pancreases) can often fail to grasp. This can be extremely frustrating. You might be asked when experiencing a high or low: “Why is this happening?” and when you give the answer “I have no idea”, you are faced with furrowed brows and confusion.
There are so many other random factors beyond our control that can influence diabetes and everyone is different. Hormone levels can be a huge one for women. Insulin sensitivity, the sites you inject into, illness or stress, medication, pain, a rise in heart rate, and the list goes on.
The lack of comprehension by some people without diabetes about the unpredictability of diabetes can become particularly problematic when there is also an eating disorder at play. A common situation is where a diabulimic insists they have taken their prescribed insulin but are then found to be in a state of hyperglycaemia. Of course a certain degree of scepticism is natural, and completely legitimate, as eating disorders can be sneaky, clever and deceptive. In fact. it would be quite naive and perhaps irresponsible not to question the given information in cases as such. I have used tricks, pulled the wool over the eyes of those concerned. An eating disorder can be all consuming in the same way diabetes can be, it can be hard to stop and consider that you are colluding with an illness that could kill you. You have your blinkers on and you act in certain ways that as a well person you never would. You can cause hurt to those you love and be shameless to the extreme.
But it’s never completely black and white. Sadly, treatment services that are sufficiently trained in diabetic related eating disorders are vanishingly scarce. This I know firsthand from experiences both as a day-patient and inpatient at units that claimed to know all about my condition but in reality didn’t have a clue as to what they were doing. I’ve been accused of exercise when my meter kept showing morning hypos. I’ve been disregarded when numbers were a few points above the target range yet I’ve (truthfully) insisted that I haven’t manipulated my insulin in any way. Unexpected highs were always considered to be my own fault no matter how much I tried to relay to them that sometimes diabetes just doesn’t play by the rules.
I’ve also been dismissed when explaining to well-meaning health professionals how my blood sugars will react or why they are reading as they are because they consider themselves the expert. For example, they change my snack at the last minute from a banana to a pear because they ‘ran out of bananas’ and I say, well I need less insulin to cover this, but they’ve insisted on the same dose and surprise surprise I’ve then dropped low. Or I say ‘Okay I am teetering at around 4 right now, if you give me my insulin at 6pm and dinner is late and doesn’t arrive till half past, I will be on the floor by then.” As a result, I then end up gulping down my meal while trembling all over the place and in floods of tears.
But no, because you are ill, everything you say must be irrational. Often doctors will just not back down or admit they are out of their depth. I can understand there are reasons for this but it doesn’t make it any easier to handle. With diabetes, as well as other chronic health conditions, the person with the condition is the expert. WE know best as to how our body reacts, we know all the facts, we have to live with it Every. Single. Day. I believe we always deserve to be listened to, have the points we raise considered and acknowledged, instead of just passed over with the shake of a head.
It’s really difficult coming to terms with the fact that we can never know what could happen day to day. Being quite certain that you will be at an acceptable level and yet be flummoxed again is frustrating and provokes anxiety. It is rare to ever feel too safe or stable as you can never be sure what may trigger the next high or low, and it can be exhausting trying to control. The simple truth is we cannot entirely do that; all we can do is our best.
By Claire Kearns.