Release of new report concerning regional variations in diabetes care

Last Wednesday The All Party Parliamentary Group (APPG) for Diabetes launched its new report ‘Levelling up: Tackling Variation in Diabetes Care’ at an event held at the House of Commons.

The All Party parliamentary group describes itself as ‘A nonpartisan cross-party interest group of UK parliamentarians who have a shared interest of raising the profile of diabetes, its prevention and improving the quality of treatment and care for people living with diabetes.’ Attendees of the evening were welcomed by the chairman of the APPG Rt Hon Keith Vaz MP who urged for a “fundamental and irreversible policy shift” and asserted the need for a revolution of thinking around diabetes care. His introduction was followed by speakers Rt Hon Jeremy Hunt MP, patient voice Lauren Proctor and diabetes specialist nurse Ruth Miller.

Conclusions within the report were reached after a series of meetings held over the last year in which the APPG has heard from people living with diabetes as well as health care professionals and leading Clinical Commissioning Groups. They have provided testimonials relating to inconsistent quality for the treatment of diabetes and associated medical needs. Examples were put forward concerning good and bad practice and areas in need of improvement. The report was researched and funded by charities Diabetes UK and JDRF.

In the lead up to the publication of ‘Levelling up’ the government has announced the provision of approximately £40million per year to be used towards the improvement of nationwide care for type 1 and type 2 diabetes. This will be extremely useful in facilitating implementation of the report’s recommendations and improving nationwide diabetes services. DWED particularly hopes that in light of this financial boost, standards of psychological support will be moved to further to the front of the agenda.

There are three key areas to the report. These are ‘high-quality conversations with the right healthcare professionals’, ‘technology’, and ‘support for living with diabetes’ which focuses on structured education most of all while briefly touching on the lack of consideration for emotional wellbeing. Each section presents specific evidence with regards to gaps in the variation of care services and explores ‘What the NHS is doing’ successfully in some areas of the country. The aim is to use these models as a framework from which to learn from, build upon and implement across the board to reduce the current NHS postcode lottery.

‘Levelling up: Tackling Variations in Diabetes Care’ can be downloaded from the APPG website. Alternatively, for a full breakdown of and review of the report and how it may be of use to someone with diabetes alongside an eating disorder, DWED provides a comprehensive document as part of Novembers premium level membership package. To subscribe for just £3 per month please do so via: http://dwed.org.uk/membership-options.

By Claire Kearns

Butterflies - a poem of memorial

I wrote this poem in 2013 for a DWED member that passed away, but in also representative of all those we had lost. I was recently was reminded of it as it resurfaced as a reminder on facebook. It was rushed and is somewhat cliched, but seemed fitting at the time, and definitely fitting to her. I read out at a memorial service that took place in London that year, among friends, including another we have also since grieved. It scares me so much that this is continuing to happen to those we love, to the precious ones. It's not fair.

Butterflies
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A mirrored disco ball turns, flickers, and bursts, 
In vibrant purples, deep pinks and brilliant green,

Illuminating, we saw pieces they did not see, 
Pieces she could not see, 
A broken mirror, shattered by distortion, patched together with sticky-tape, 
Yet under daylight: a beautiful mosaic, 
Shimmering and shining.

Talents trampled down in killer heels, 
A hatred so harsh and toxic it burned,
Desperate Bambi eyes, searching for good, 
That was already so obvious to us, 
The shy caterpillar, hiding cocooned, 
Then uncurling, with a mischievous smile, 
Lit with undeniable sass and glitter.

And she was of colours and butterflies. 
And she dances, shaking up the air. 
Beside us, never forgotten.

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.

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.

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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

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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.