Caring for a career

This blog post is very different from my usual topic, however it is a message that I wanted to get out there, and what better place then here. As many of you will know I am a final year student nurse. I am thoroughly enjoying my training and I feel very lucky to be able to do it... (cont)

Dear Doctor

Dear Doctor,

I don’t know if you’ll remember me, we met 13 years ago in your GP surgery. You were the first Health Care Professional that I had spoken to in the UK following my diagnosis in Paris. You had a kind face and you were friendly and welcoming... (cont) 

Patients and Health Care Professionals working together online

Following on from my talk at the Diabetes UK Professional Conference last week I've been buzzing with ideas about how patients and Health Care Professionals (HCPs) can work together, via social media, to engage with each other in order to make changes to patient care. 

After a meeting with my University's Patient and Public Involvement lead this week, I came away as a brand new 'Expert by Experience' student representative! I'm not sure how I feel about being called an 'Expert' but I suppose it's an empowering title, which is what patient's need - empowering. Anyway... this is a completely new role to me, well officially anyway, as I've always been involved in projects like this but I've never been an 'official' representative before now. I'll talk more about this once my first meeting (next week) has been and gone... but for now I'm incredibly excited about the role. 

Anyway the purpose of this blog is to share an exciting follow on from the Diabetes UK Conference... A diabetes tweet chat with WeNurses (the online nursing community) and Our Diabetes (a part of the diabetes online community) about how patients and HCPs can work in partnership in online spaces. Perfect timing given all the chatter about it in recent weeks! 

This was a great example to demonstrate to the HCPs who have recently started following and interacting with me online what I meant during my talk when I said that we CAN work together, that social media CAN break down barriers that sometimes cause a divide between patients and professionals in a clinical setting, that online there is NO hierarchy and that way of communicating CAN be transferred to a health care setting... As Michelle Mello (@MSHMello) said during the tweet chat; "People with diabetes are nurses & vice versa so why are their barriers anyway?"

The tweet chat asked the following questions:

• How can nurses use social media to listen to the people we care for?

• What are the rules surrounding interaction with patient groups on social media?

• What do patient groups want and need from nurses in this space?

• Do patient groups want/need health care professionals invading their social space?

• Moving forward how can we collaborate and listen to people with diabetes (and indeed other long term conditions) using social media?

                                                     

I had a lot of opinions and ideas bouncing around my head, both as a student nurse and also as a patient, but as I was in charge of the Our Diabetes twitter account on the night of the chat I wasn't able to share as much of my personal thoughts as I would have liked to. So I thought I'd do that now...

For me, the online space that I share with HCPs in an invaluable tool for engaging with them in the comfort of my own home, in a relaxed environment, where I can think about my questions and answers and not feel under pressure to perform. I know that there are boundaries as to what I can and can't ask - questions relating to my personal diabetes treatment and my regime etc aren't discussed with HCPs - end of. I wouldn't put any HCPs in the position where they are being asked to give me personal medical advice online and if I was offered personal medical advice, I would politely decline. However, if there's something that I want to research, something from a reliable source, then HCPs often point me in the right direction.  

The online space allows me an insight into the side of the NHS that, as patients, we rarely see. If it wasn't for tweeting nurses, doctors, commissioners etc then I feel that I would be in the dark about important issues relating to my care, this something that helps drive me to understand why I don't always get the care I want or need. If I was in the dark then I think I would disengage with my health and my HCPs through frustrations with the system - that's hard for me to think about.

The online space also allows me to tell my story. It gives me a voice to share my experiences of diabetes, the NHS and the care I receive. Often I don't realise that sharing snippets of information can lead to changes being made. I'm just chatting away, feeding back the positives and negatives (often without any intention other than off-loading), but a HCP will see this and learn from it. 

That's the beauty of health care social media - If we can learn from each other without realising, just think what could be achieved when we really put our minds together.

Ninjabetic x 

More information about the WeNurses/OurDiabetes tweet chat and transcript - http://www.wenurses.com/MyNurChat/archive/archivewenurses11032014.php

Follow @WeNurses on twitter

Check out the WeNurses website -  http://www.wenurses.co.uk/ 

Follow @OurDiabetes on twitter 

Check out the OurDiabetes website - http://www.our-diabetes.org.uk/

The 4Ts - After diagnosis

The 4Ts campaign was launched by Diabetes UK in order to make people aware of the signs of undiagnosed Diabetes. Knowing these signs could prevent a person from going into diabetic ketoacidosis, which can be fatal.  

The signs to look out for are; 

• Thirst
• Toilet
• Thinner
• Tired

You can read more on this campaign here 

However it's important for people to recognise that the symptoms that present at diagnosis don't always end there. 11 years after being diagnosed I still experience these symptoms.

I can only share my personal reasons for why this has happened in the past and occasionally now, and hopefully by sharing them it may give a little insight into how we can help and support others who are displaying the 4Ts.

Here are a few of mine:

Education

A lack of diabetes education can lead to all sorts of difficulties and, for some, complications. Diabetes is a life long learning process and educations needs to start from the very beginning. Structured education is incredibly helpful as the next step from basic education, and it allows us to think of strategies to adapt to our own lives... Being given a leaflet some insulin pens and a blood glucose meter, then being sent on your merry way... Not so helpful. 

Here are a few educational tools that would have made a big difference to my diabetes management:

Carb counting - Is everyone taught how to carb count from the start? Well no, they aren't, but how long is it before people are informed of this amazing self management tool? 

For me... 9 years. 

It wasn't long until I was put on a basal bolus regime, and for 9 years I was told to take exactly the same amount of insulin 4 times a day and to avoid sugary food and drinks - that was all. I didn't use the internet or social media to educate myself about diabetes until 2 years ago; otherwise I'm sure I would have discovered carb counting for myself. I relied on my health professionals to give me the information I needed to control my blood sugars, but from the start it wasn't delivered. 

And then one day I was told about a wonderful educational programme (JIGSAW) that not only taught me how to carb count, but almost everything else I needed to know about my diabetes. As insightful and helpful as this was I couldn't help but feel a little sad and disappointed that I hadn't been offered it sooner. I understand that staff are stretched, money is tight and time is precious... but for 9 years...

Corrective doses - I had no idea that I could take a little more insulin, without food, if my blood sugars were too high. On being told this 2 years ago I was shocked... Can I really take insulin without food? It was like I was being exposed to a whole new world... My blood sugars improved dramatically after this discovery. Combined with being able to carb count, I felt like a whole new person.

Rotate injection sites - Again, I didn't know this until 2 years ago! 9 years of injecting into my legs caused hard lumps and extra fat deposits to develop. These lumps change the way insulin is absorbed, making it more difficult to keep your blood sugars within target. For me this also contributed to high blood sugars, I just didn't know it at the time. 

Needle Phobia

Pre-diagnosis I disliked needles, but post-diagnosis I feared them, to the point that stopped injecting. A phobia is an irrational fear of a particular situation or object and I avoided both in any way I could. 

I was labelled as 'non compliant' even though I had admitted my fear of needles on a number of occasions in appointments. I made no secret of why I didn't get my hba1c done, but never was there a suggestion made to help me around this problem. To this day none of my health professionals have even approached the subject and I was even told by one only a few months ago; "You do not have a fear of needles".

I accepted that I wasn't going to be given help on this one, so I found my own way around it... I studied a psychology module about phobias in patients - I chose to concentrate on needle phobia and from this I found my own self help strategies.

Stress 

This one's a pain in the pancreas. Stress can make a person do some strange things, but it can also make blood sugars do some equally strange things. 

When we're stressed (physically or emotionally) our stress hormones kick and raise our blood sugars in order to help us deal with the situation. However for those of us who have diabetes, bringing those blood sugars down can be tricky. 

Recent prolonged stress has left me with the 4Ts - I couldn't remove the stressor, therefore I was/am tired, thirsty, thinner and going to the toilet more often. Whilst it was happening no matter what I did to try to bring my blood sugars down they would not budge.

Stress can also affect appetites, causing blood sugars to go off target. I lost my appetite for weeks, it came back with a vengeance (comfort eating) and then off it went again. 

On seeing my consultant last week I realised that I should have gone to him much sooner than I did. I tried my best to adjust my regime and combat the high blood sugars, but being unsuccessful only added to the problem. A few comforting words, an understanding wink and a review of my sugars has helped immensely. 

Control and Rebellion

Control - This is a strange one for me - Being in good control of blood sugars, diet, exercise, and overall diabetes management can be incredibly empowering and rewarding. 

However control can also be a form of protection from hurt and pain that may have been experienced - usually it's reinforcing the problem that has caused it, and therefore not protecting us from it. Not testing blood sugars and not injecting can be forms of control in people's lives.

This leads me to...

Rebellion - Not a cry for help as some would think. I was once described as a covert rebel. I would sit and smile sweetly in appointments, but secretly I was thinking of different directions to take, escape routes and ways to cheat my clever health professionals. I didn't want to submit to their authority. In the past I'd only experienced rushed appointments with little or no change in their structure, leaving me with little or no change in myself. I wasn't given any reason to feel wanted... I felt I was simply there as a hospital number.

And today...

Today things are different... I can see the mistakes that I made and the mistakes that were made with regards to my treatment. I can see the different options that are available to me if I open my eyes and ears. I can see that if I want something I have to go out there and get it for myself... but I can also see others who are still struggling to get what they need for many reasons, and as I said before; hopefully by sharing our experiences and showing understanding we can help and support them through those 4Ts.

Please feel free to add any of your own reasons for why you still experience the 4Ts and how you have been helped/helped yourself in overcoming them.

Ninja x

7 day working in the NHS

“We live our lives 24/7 and an illness doesn’t stop for anyone.”

This was said by a patient recently at a conference I attended. The conference was a learning exchange involving patients, carers and health care professionals, looking into 7 day working across the NHS.

To me it seemed like one of the rare opportunities that I wish would happen more often, so I of course jumped at the opportunity at attend as a patient representative. Those who had the power to make 7 day working a reality were sat on my table, listening to not only my experiences, but those who had shared theirs with me the previous evening.  

Back and forth all day, we listened to stories from patients and carers… some incredible stories of the lack of available specialists leading to life threatening situations. A common theme rang throughout the room… patients who need specialist care fear being admitted to hospital on a weekend or an evening. I certainly sympathised with them… nodding in agreement and sharing my recent experiences that have lead me to sharing this same fear. Any hospital should surely provide its service users with reassurance that they will be safely looked after, however it seemed to me that what is happening is that poor care, for whatever reason, is reinforcing fear in its users.

During the conference I was sitting next to an elderly gentleman called Rodney. Rodney suffered from a stroke many years ago, and thankfully on the day it happened he was saved by a specialist. This is what Rodney said to the room;

“I feel lucky that I had a stroke on a week day. Had it been any other time I would not be alive now.”

Once Rodney had recovered from his stroke he made it his mission to have a 7 day stroke service in this local area. He spoke to commissioners, health care professionals, other patients and the media. He took on the battle to ensure that people would be safe should they experience a stroke out of hours and he was successful!

Personally, when it comes to my diabetes care I feel completely looked after and safe when admitted during a week day because my diabetes team are there. Even if the person sent doesn't know me, they still have the knowledge to make a safe decision. However this year I have been admitted on weekends and evenings and I have had no end of problems. My diabetes team are aware of what I went through and how dangerous it was, and I'm happy to see that something is being done about this. I know that it's not through lack of trying by my D team, I know they are as frustrated as I am, but should it come to this? Should a patient with diabetes go into DKA or hypo due to a lack of understanding before action is taken? 

If you'd like to look at this link you can read what other patients with diabetes have experienced.

Other patients at the conference spoke about the trouble they have had when diagnosed with an illness over the weekend. The diagnosis is made, however it isn’t until Monday morning that the appropriate treatment can be given, leaving patients deteriorating or worrying. I myself was told once on a Friday evening that a scan showed a shadow on my brain, but nothing could be done about it until the surgeon was in the hospital on the following Monday morning. Knowing what this could have meant left me distressed and panicked for 2 days before the surgeon could perform a biopsy. An early diagnosis is of course fantastic, but not if the means to treat the illness aren’t available.

What struck me that day was the willing from the health care professionals to do more. To go above and beyond and to admit that mistakes are made, projects fail, lessons are learnt and ideas simply must be shared. I could sense their frustrations when they heard of the patient stories, and although there are some bad apples out there, I was grateful that in that room was a consensus that 7 day care can be done.

Many concerns were shared by both patients and health care professionals regarding a 7 day service:

• Clarity is needed over the definition of a 7 day service
• What would 7 day care mean to the public and professionals
• Will there be standard expectations/minimum standard across the UK and can this be extended and developed over time
• Is it possible to have a service where standards don’t differentiate between week days and weekends
• How will the public be educated to use the service - e.g. when to use it and how to use it appropriately
• Do health care professionals have the will and desire to make this work
• Will a 7 day service be safe for patients and staff
• How can a 7 day service be implemented when an overhaul is firstly needed for traditional 5 day services

These questions and concerns have been taken on board and will be put to Sir Bruce Keogh before he writes his next report. Let’s hope that this learning exchange has been enough to make positive steps towards a safer future for you, the service users of the NHS.




Ninjabetic x

November - diabetes awareness month

November really has been an amazing Diabetes month! I haven't stopped at all and I've loved every minute of it, as I'm sure we all have!

Firstly I attended another Young Leaders meeting at Diabetes UK head quarters. This was our third meeting and I can really feel the progress that's being made. It's clear that a lot of work has been put in since we last met at the Big Event during the summer. This hard work is down to the wonderful Alex and Matt who keep us in the loop and keep us on our toes. The group will officially kick off next year and I'm sure that we will be making a big splash in the world of diabetes... for now though... my lips are sealed about our plans.

Next on my diabetes agenda was to write two guest blogs. One was for Timesulin about what World Diabetes Day means to me and why I feel it is so important. I was really pleased when I was asked to do this, I know that Timesulin has made a big difference to many people's diabetes self management, also the team are absolutely lovely and do a lot to raise awareness for diabetes! I love to give back to the people who I feel really and truly want to help people with their diabetes, and I get this feeling every time I speak to one of their team.

Blog number two was for Diabeto device who are the makers of my favourite little blue birdie diabetes accessory. I regularly interact with one of the creators and was really happy when he asked me to write for them. I was told that I could choose any diabetes topic I liked ,so I went with Blood Glucose Monitors. I chose my Accu-check Expert as I'd just found out that my HbA1c result had improved and I feel that I owe a lot to my meter.

Next up was a biggie for me! I was honoured to be asked by Diabetes UK if I would like to write about my diagnosis for the Independent which would be published on World Diabetes Day!

What an amazing opportunity to have a bigger voice to raise awareness for Type 1 diabetes! The article that I wrote was in support of the Diabetes UK 4ts campaign which is something that is very close to my heart. After a traumatic diagnosis I'll do anything I can to prevent that from happening to someone else. This is why I support their campaign and why I included it in the article... the message is simple but so strong. This campaign wasn't just for World Diabetes Day or for November, but it's for every day until a cure has been found!

Finally I travelled to Animas head quarters on World Diabetes Day to meet with their team and take part in talks and focus groups. I met with my lovely friend @Superbetic_T1 and the mysterious @grumpy_pumper (who I caught smiling at least twice throughout the day!) We listened to inspirational talks from teams of Type 1s who had swum the channel and @Superbetic_T1 told us about how he's recently climbed Mount Kilimanjaro despite only being diagnosed a few months before!

At lunch I thrilled (bored really) Fred Gill with stories of why I want to become a Diabetes Specialist Nurse. I was completely unaware of who he was and was a little embarrassed when I found out that he rows for Great Britain. He was actually there to give us a talk about his experience of diagnosis and adapting, but sadly he had to listen to me nattering away before hand!

The whole animas team came together at the end of the day for a walk around the offices, all dressed in blue, to celebrate World Diabetes Day together. At the end, Simon (regional sales manager for animas), took the mic (for what I was hoping was the start of a karaoke session) and thanked us all for our support!

It was a good day and every time I checked twitter or facebook I saw the words World Diabetes Day plastered everywhere. I could tell that people were making a massive difference in any way that I could... articles, post card exchanges, photos, events, talks, fundraising, blogs... anything and everything!

May the amazing work support and awareness carry on into the future until the cure is found!

50 Shades Of DKA

I'm sure that many people have read or heard of the novel 50 Shades Of Grey... If you haven't then here's a very short summary (close your eyes if you don't want to know what happens).

Girl meets guy... guy is dangerous for girl... girl can see the danger but doesn't know how to stop... girl keeps going back for more...

When I think about DKA (diabetic ketoacidosis) that is how I see my experience, a dangerous pattern which sucked me in time and time again. DKA broke me so many times and in so many ways, and after I fixed myself and picked myself back up I would allow my diabetes to chip away at me until I was too weak to fight it again.

For those who haven't experienced or don't know what DKA is here's a short blurb to explain more...

"Diabetic Ketoacidosis occurs when the body cannot use sugar (glucose) as a fuel source because there is little or no insulin. Fat is used as fuel instead. As fats are broken down, acids called ketones build up in the blood. In high levels, ketones are poisonous.

The signs and symptoms of DKA are: Deep rapid breathing, dry mouth, flushed face, nausea and vomiting, abdominal pain, decreased appetite, decreased consciousness, dulled senses, frequent urination and increased thirst."

Recently a fellow ninjabetic, Danie, experienced DKA for the first time since being diagnoses 15 years ago. Danie had been ill for a while and unfortunately this had lead to her being admitted to hospital with DKA. I remembered that we had briefly spoken 1-2 months ago about what it felt like to go through it and I hoped that she never would. I felt instant guilt at the fact that Danie had been through this terrible experience when she had taken measures to prevent it, yet I had openly exposed myself to it on a number of occasions.

In previous blogs I have explained that it was a 6 monthly occurrence for me... a bit of a routine in my diabetes life. The agonising pains and confusion, being unable to breathe or even walk were all quickly forgotten about within a few short weeks and the build up would start over again.

So the DKA was that guy... aggressive unstable and menacing. My problem was that I didn't know how to escape the vicious circle that I seemed to be trapped in, I didn't know how to stop. My consultants would visit me while I was in hospital and ask why it had happened. "I forgot to take my insulin" I would tell them innocently. "I promise I won't do it again" hoping that my big puppy dog eyes would work. They would then make me an appointment a few days later to discuss ways of preventing it and I would sit in that appointment completely numb with an invisible barrier around myself.

For me accepting help from someone who didn't understand and showing that I needed to lean on someone else was frightening! So frightening that I would put myself in a position which could have cost me my life.

The thing about DKA is that it isn't only the "there and then" that affects a person, it's the weeks and months after that creep up slowly and sometimes silently which need to be looked out for. It's all very well having an appointment after an admission but what happens to the person who feels unable to connect with their HCPs? What happens when GP and clinic appointments start to feel generic? What happens when the advice given seems to be turned out from a book with no feeling or empathy behind it? Is that when people start unknowingly and unwillingly going back for more?

I realise that most people who experience DKA do not purposely subject themselves to it. Was I naive and ignorant to go through it so many times? Was I selfish to add myself to the NHS statistics? Yes but at the same time was I scared and withdrawn because I thought that no one could help me? Did I feel like a lost cause because between those appointments I felt that I was alone and was struggling to cope? Yes again! There are always reasons for why these things happen and just because I wasn't shouting it from the rooftops and symptoms weren't always visible, that doesn't mean that it doesn't exist and shouldn't be addressed.

When my consultant suggested I start a diabetes forum I thought it would be great for me to share my experiences with other people and to prevent them from making the same mistakes that I have, but there was nothing that could be done for me. I had accepted that I was destined for another DKA in 6 months time but maybe I could stop others from having that same destiny. After going through 9 years of hospital admissions I feel like I've found the missing piece to the puzzle! I had no idea that the diabetes online community would give me so much hope and positivity.

Recently another Ninjabetic, Hannah, told me that she'd had a dream that I was taken into hospital with DKA. I thought back to when that had last happened and realised that it was 15 months ago. When I spoke to Danie about her admission I said that it would be interesting to compare our outpatient care following an admission. Thinking about it has made me come to the conclusion that combined with the medical advice that I recieve,  speaking to people who completely understand is one of the most effective outpatient treatments that I could wish for. Every day that I'm speaking to people with diabetes and their famlies is another step away from putting my body and mind through another DKA and I can hopefully do the same for others.

I had an email from a young girl with type 1 diabetes recently saying that she wished I could be there to hold her hand in appointments because even though she is surrounded by HCPs constantly she still feels very alone and misunderstood. I know what she means, I really do, and I plan to email this blog to her as I know how she enjoys the 50 Shades trilogy... but also to remind her that after the second instalment (50 Shades Darker) comes the finale... 50 Shades Freed.

Ninjabetic

Diabetes UK Young Leaders - The night before The Big Event

I had intended to write a blog about the Diabetes UK Big Event which was held on Saturday 14th July (2012) but unfortunately I didn't get to see much of it, so this would have been the extent of the blog (I'll write a mini one about the meeting soon). Instead I'm going to write about the social side of the event because the social element has now become an important part of my diabetes regime.

Friday 13th July (2012) was the date that the Diabetes UK Young Leaders had been given to reunite, to socialise, to welcome new faces and ideas and to prepare themselves for a productive meeting the next day.

The 20 Young Leaders are from the UK Ireland Scotland and Wales and are all between the ages of 17-30. The aim of the group is to lead young people with diabetes, to support them and to offer guidance. There is a gap in the service for young people at the moment and we want to fill that gap with ideas plans and action to create a better future.

The agenda for our day was going to be taken up mostly by meetings to discuss and finalise plans for the Young Leaders group. The setting was Warwick University where the Diabetes UK Big Event was taking place, it was the perfect setting for young people to meet.

Our "social meeting" was to begin (and end for me) in a bar named "The Mucky Duck" which we arrived at around 5:30pm. Too early I hear you say? Well so did I, but being the oldest I was shouted down and forced.. I mean literally dragged kicking and screaming into the bar! Once I had gotten over my utter shock of being manhandled I calmed down and soaked up the converstaions.

Obviously we all have our diabetes in common and chatting revolved around this to begin with.. What we eat, who has a pump, how our blood sugars are doing etc and I was lapping it all up! See this is something that I had never experienced throughout my 10 years of living with diabetes, until a few months ago when we all met for the first time. I realised when I had left the last meeting that this is what I had been craving all along! The people who completely understand what I'm going through. People who can give me advice and share tips and experiences. People who I can honestly and openly talk to about anything diabetes related because the chances are they've been through it themselves.

Friendships are powerful things and with a condition like diabetes I think they can be a massive influence in the way we take care of ourselves and they way we view life with diabetes.

So the conversations soon turned to football, which meant that I could move away from the guys and chat to Hannah who is quickly becoming like a little sister to me. We chatted away until the heavens opened up and we had to take shelter inside. Our next stop was a pit stop for fuel (food and insulin) at the student restaurant/bar.

This is a new experience for me as I've never eaten with other people who have diabetes before. We all picked from the menu and Hannah calculated my carb intake for me as I had no idea what it was. It was all very exciting and new as I usually eat in front of my computer at work, in front of my laptop at home or on the go when I'm rushing around! Sitting down to enjoy a meal with good friends was what I really needed. I actually enjoyed taking my time over the food and tasting it for what seemed like the first time in ages! Having that good experience and associating it with food is something which is lacking for me, so once again my diabetes friends have helped me more than they know!

After we had all had our fill we headed back to The Mucky Duck where the guys hovered around a young pretty barmaid and the girls sat and chatted. By this time there were a few additions to the group and we all mingled as much as we could. Unfortunately the guys were in what looked like a hypo trance around the pretty barmaid so I left them flexing their muscles to chat to Joe who manages the social media side for Diabetes UK. Working in social media and health care is my dream job so I bombarded him with questions about how he uses social media to interact with different people on a daily basis. I learnt so much and ideas kept popping into my head about how I could reach more people, help more people and make more of a difference. Another win for diabetes as I now had even more motivation thanks to all of this socialising!

As the clock started ticking closer to midnight I started to feel the early alarm I'd had and the long journey, so I made my excuses (being old was one of them) and headed for bed. Only 3 of us left early but I don't think my night could have been any better. I watched people laughing and joking with each other as I left and I was happy. I'd spent time in the company of some wonderful people and had even more to come the next day. Every time that I speak to someone about my diabetes I get inspired to make more of a difference to other people. I don't think that I would be where I am today if it wasn't for the great care that I receive at my hospital, but I know that I can maintain that with the diabetes friends who I speak to every day. They are just as important to me as my HCPs now, and for that I want to say thank you to everyone.

Ninjabetic x

Festival fun time tips

As festival season is fast approaching I thought it would be a good idea to share some tips and tricks with you all, so that you can stay safe while having fun!

I needed a bit of expert advice from a certain pro in case I started dishing out nonsense, but I had to be sneaky... I had to become The Ninja!

Without wanting to raise suspicion as to what I was doing, I planned a covert operation in order to gather intelligence from a man who has some.

I believe that my subtle questioning worked, as I left with the information that I needed. However having to awkwardly approach tip 23 means that I can no longer look this hcp in the eye.... But I did it for you guys!

So check out the tips and links and feel free to add your own in the comments box at the end of the blog. Happy festivaling guys!!

• Download a site map before you go
• Choose a tent that you will recognise - bright funky colours and patterns etc
• Buy a solar charger for your phone
• Make yourself familiar with the first aid/welfare/meeting area as soon as you get there
• Where possible on arrival and when departing, try to stay to the side or maybe arrive and leave a little later to avoid the crowds. Especially important when departing due to the smell of unwashed festival friends
• Money money and more money (this is when parents come in handy!)
• Food glorious food! (There are always shops nearby, just jump on a bus and stock up.)
• Make plans in case you lose your mates, your funky tent, your parents money etc
• Set reminders on your phone to test your sugars and take your insulin
• Most first aid points are happy to store medication which needs refrigerating, but take a cool pack just in case
• Also take a doctors note with your prescribed medication on it
• Take ID with you and wear a MediAlert or something similar. That way if you do have a hypo, people will be able to help you and not assume that you've just had one too many
• Stock up on hypo treatments and keep some with you at all times
• Insulin - If on pens then talk to your diabetes team about splitting your long acting insulin (half in the morning and half at night) it in case you do accidentally forget to take it, that way you will have some protection. Check with your doctor before doing this though - just give them a call
• Take back-up disposable insulin pens in case your pump or other pens get damaged in a mosh pit
• Stay away from people with unnecessarily large spikes in their hair if you do get dragged into a mosh pit
• All festivals run an on-site hospital staffed by doctors and nurses, and also include pharmacy's. These aren't NHS pharmacy's though and will charge for medication, so get a receipt and claim your parents money back for you to spend at a later date
• Take adequate supplies as the on-site pharmacy may not have a huge amount of stock
• Don't inject, change pump sets or test your blood sugars in the toilets - use the family areas or the site hospital
• Think about your parents, they do worry (no matter how old you are) so give them a text every day to let them know that you're ok and that their money is being well spent!
• Don't drink anything that you haven't opened yourself or that you have let out of your sight
• Wear sun cream, drink plenty of water and stay out of the sun when possible (remember - heat affects insulin and may cause it to go off and it also affects insulin absorption and can cause hypos)
• Lastly....please use condoms (unless you want to call your child "Download" or "Reading and Leeds Fest") - get them for free from your GP or GUM clinic (unfortunately they don't give out JLS branded there)
• Oh and bulk buy baby wipes (you'll need them, trust me)

http://blogs.diabetes.org.uk/?p=2103

http://www.powerbee.co.uk/solar-phone-chargers.html 

http://www.friouk.com/ 

http://www.stickmedesigns.org/

https://www.facebook.com/pages/Wowbands-funky-and-affordable-medical-ID/206583892689328?ref=pb

(you may want to send these links to your £ parents £)

Ninjabetic

Stop bashing my Health Care Professionals….

I’m sure that we have all read in the papers at some point that diabetes care is not at the standard that it should be. That “Only half of NHS patients are receiving acceptable care” - The Independent. As people with diabetes we want to know why this is happening and what is being done about it! As soon as a story is published with any negativity it causes uproar throughout the diabetes community, and I for one admit that I’ve joined in before! It’s so easy to get caught up in it all, but we need to stop and think about how this negativity affects those who are trying their best to help us.

Do we really think that hcps aren’t trying? That they only put in half hearted efforts? That they spend years at medical school to not give everything they have to their patients?

I don’t have statistics or charts to show you all because none of that matters to me right now. I can feel in myself everyday that the work my hcps have put in is doing me the world of good and that is what is important to me.

We need to show that there isn’t just bad news out there, that diabetes care has come on leaps and bounds in the last few years and most of all we need to pull together as a team to support our hcps…. because where would we be if we didn’t have them? We need them, and I know that they do their absolute best to give us the care we deserve! So next time we see the papers bashing our hcps, please stop and think from every angle about where to place the blame.

I collected a few stories today from people who agree that hcps are wonderful people and they deserve a massive pat on the back for what they have done for us. Please read through them and add your own  story in the comments section at the bottom of the blog if you would like to contribute!

Jen said; “I'll always be thankful for my DSN teams through the years, especially the ones that said yes to be trained to do the DAFNE course. You guys are a big part of the reason I'm still alive today. Thank you also for helping my parents cope with their daughter's diagnosis at such a young age. I can fully appreciate that being healthcare professionals is never easy; trust the ignorant to make it all black and white when it's not.” - Jean, Belinda, Frank & Doctor Huston at James Paget University Hospitals NHS Foundation Trust.

 

Gemma said; “The team I work with in the Ulster hospital are very close knit and supportive they have seen me through pregnancy related diabetes, and followed my journey to where I am now. They have always supported my requests and always been full of encouragement even when things weren't going my way. They taught me that one bad sugar is not the end of the world. What matters is trying your best and living your life Best piece of advice - You are a person first and diabetic second, and that should never change.” - Ulster Hospital, Belfast.

Martyn said; “My diabetes team are my guardian angels. When I think of all the positive things that have come out of my diabetes, they're right there... it was my DSN who encouraged me to start volunteering for Diabetes UK, because she helps to organise weekends for children with diabete. If I have a question, about going to a music festival or even just how to deal with a cold, I know she's right there on the end of the phone or email if I need her. She, and the fantastic doctors at my clinic, worked to get me an insulin pump, and I'm so grateful, because it's given my diabetes a kick up the proverbial backside. Finally, I feel I should give a quick mention to my local doctor's surgery and pharmacy. 99% of the time, they put up with my constant prescription changes and requests, and they always get my repeat prescriptions sorted in about a day. So thanks, everyone, for keeping me alive and happy! You're alright really.” - Hospital: Princess Royal Hospital, Telford.

Hannah said; "my doctor for every moan i have about him is a truely brilliant doctor. i cannot put into words the grattitude i have to him for what he did. he never ever gave up on me at my worst and when he did get through to me and i changed he was there for advice and support every step of the way. him and my dsn are on the end of the phone of the computer if i need help, and my dr keeps a check through the dsn on all of us. not just is he a brilliant doctor in every way but i actually get on with him as a person, he doesn't make the appointment all about diabetes." - Fairfield General Hospital, Bury.

Leah said; "My son, aged 13 months, fell into a diabetic coma. He was transfered to Guys Hospital ICU and they were fantastic. Once he was out of the woods we were transfered to St Thomas Hospital, London, they were also amazing and so supportive. He was then moved back to our local hospital, Darenth Valley in Dartford, where his diabetic team have been fully supportive and helped me apply for the pump 6 years on. The regularly check in and help me. Our pump team, especially Ann from accucheck, have been amazing helping me overcome my fears and doing extra work training us. His diabetic paediatrician, Dr Gupta of Darenth Valley always refers to us as family and even comes to see my son whenever he is admited."

Ninjabetic (Me!); "Last year I was on a complete downward spiral when it came to my diabetes and I saw no way out. For me it was the end and nobody could change that. If I hadn't met my consultant then I am quite sure that I would not be writing this now. His enthusiasm and passion for diabetes and the commitment to his patients has inspired me to pull myself back. I honestly feel that I owe him my life and there are no words to thank him enough. He is completely dedicated to all of his patients and I know that he will always be there for me, whenever I need him. He deserves so much recognition for his hard work and dedication and I know that he will continue to improve the lives of people with diabetes in any way that he can. - Dr Partha Kar, Queen Alexandra Hospital, Cosham.

I'd just like to thank everyone for their stories and I hope you have all enjoyed reading this blog!

Ninjabetic