Diabetes UK Family Weekend

This weekend I attended a Diabetes UK family weekend in Darlington.
I hadn’t volunteered on a care event for many years, but I was recently chatting to a friend at the Tesco Big Collection, who has started volunteering this year, and decided to apply again. I was really pleased to be chosen for one this year.

We arrived at the beautiful hotel on Friday afternoon and met the other volunteers- who either had Type 1 or were a parent or sibling or were a HCP, such as a dietician or doctor.
Families arrived from 4pm, and we all met at a welcome meeting. All the volunteers stood in a horseshoe and explained who they were, their connection with diabetes and their role for the weekend.
I was to look after a little girl in the crèche, who’s older sister had diabetes, but in a last minute change of plan (flexibility is key 😁) I moved to the 9-11 year old group.
With me were three 9 year old girls, one of whom had Type 1 and was diagnosed 9 months ago. The groups were mixed girls and boys, Type 1’s and siblings and everyone was equal.

On Saturday, all the children, from ages 1-16, set off on coaches to Beamish museum. We had a fantastic day out- including tram rides, old shops and steam trains!
In and amongst our day, children and adult volunteers were testing their blood sugars, counting carbs, sampling victorian delights and injecting or bolusing on their pumps- and no one batted an eyelid!
I loved all the questions and learning that happened naturally throughout the day. Children with diabetes were asking each other about their meters, or finding out about different pumps. Two little girls asked me all about my pump handset and it’s Bluetooth whilst we were in the confectioners and I was bolusing for handmade cinder toffee, and siblings compared experiences chatting over their picnic lunch. But this was only part of the general chatter, which also included One Direction, favourite sports and X- factor!

The weekend was also a time for parents to meet adults with Type 1 and also other parents to share experiences and learn from and with each other (sorry parents- no trip for you)
As a Type 1 adult myself, I enjoyed sharing my experiences with the children and parents but also other Type 1 adults- you always learn something new or compare pumps (and enviously admire trialled Freestyle Libres 😉) when you get together!

Saturday culminated in a disco with party tea for the children and then a quieter staff meal (to recover!)

As we waved the families off on their way home on the Sunday, I hoped that they had enjoyed their weekend in a lovely hotel, but had also gained increased confidence, support and knowledge.
I personally had a great time and hope to volunteer on more soon- maybe even a holiday next summer!
If you’ve never attended a Diabetes UK care event, either as a family living with diabetes, or as an adult volunteer I would recommend you look into it and give it a go!
http://www.diabetes.org.uk/how_we_help/care-events/

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Time to relax now!

All I want is the best!

Well perhaps that sounds too greedy, grasping and demanding.
But let me explain..

Diabetes UK have clear guidelines on what care to expect in their 15 Healthcare Essentials http://www.diabetes.org.uk/Documents/15-healthcare-essentials/are-you-really-getting-your-15-0912.pdf
And say that ” Whether you have just been diagnosed or had diabetes for some time it is important that you get the right support for managing your diabetes”

When I was diagnosed in Nottingham in 2003, I received excellent care- I didn’t realise at the time just how much they cared and put time and effort into supporting me.
I have moved about a bit, through university and work, and found it difficult to regain the same care and support since.
I am an articulate university graduate and a teacher, and I usually attend my appointments during my PPA (planning, preparation and assessment) times so I am also usually dressed fairly smartly (a morning appointment- pre paint and small people)
At first I only suspected that this impacted negatively on my care. I knew that other Type 1’s had more contact and support from their clinics, but I never seemed to find a DSN who was really interested, or had time to help me with tweaks to basals, or suggest things I had only heard of on twitter- basal testing, weekly loan CGMS or indeed insulin pumps!
This theory was confirmed when I took my evidence and reasons to a pump consultant and persuaded him to accept me- result! I couldn’t wait to try all I had heard on twitter to really improve my control and hba1c, particularly my dawn phenomenon.
However, during the first 2 weeks of a pump I had barely any support. When I questioned this “You’re a mature, intelligent woman- we weren’t worried about you” was the response I got. I learnt to work my pump mainly through twitter and friend support luckily. But is that basic care and support really too much to ask for?

Fast forward almost a year and I have moved into my new house in Calderdale. Calderdale NHS trust has 2 hospitals- Huddersfield and Halifax. Through a recommendation and patient choice I chose Huddersfield and was referred to the Diabetes team. I attended an excellent clinic with (sadly) a near-retirement locum who did all 15 checks and was fabulous and interested and caring and ‘above and beyond’ in my opinion. He referred me to the pump clinic, which I attended last month and I transferred all my pump care there.

But the battle continues.. It turns out that Calderdale NHS trust have sub- contracted their diabetes nurses to a private firm called ‘Locala’ www.locala.org.uk And because I don’t live in Huddersfield – I live a whole 6 miles away- I can not see their DSNs. The nurses are at clinics. The nurse was in the room with me and the pump consultant and was happy to see me and arrange a further meeting.
But today I received a voicemail from her to tell me that because I don’t live in Hudderfield, or have that postcode, I can not be seen by them and they have, without my permission, transferred me to Halifax DSNs who will be in touch.
I need help with my pump, I want help and support and yet it seems to be so difficult to get it.
This effectively secretive privatisation seems to be able to call the shots and gazump patient choice. Is this right? I am baffled.
So perhaps my title is sensationalist but surely everyone deserves the very best support and care available to manage their long term health condition, no matter what their age, education, or choice of outfit in a clinic.

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George goes to Dubai baby!

I’m back! Had a lovely week catching up with my best little friend and seeing where she lives, works and drinks in Dubai!
Overall George the pump had a good trip! There was 1 stubborn high and 1 stubborn low episode during the week but that was all the drama really, so I’m counting that as a win!
We did uptown, posh Dubai, and old town, traditional souks (including my favourite wooden boats for 20p a ride)

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A few things I learnt along the way:

•Even when travelling from Heathrow you still encounter security staff that have never seen or heard of an insulin pump! On the way out I unclipped it for examination and the lady took it away for sometime to swab it! An anxious few minutes! I’ve since discovered it’s best to leave it attached and it’s ok through the body scanners- better to mention only when needed eg if selected for hand scanner. It cannot go in the bag X-rays though. I carried a letter from my hospital to explain too.

• The advice is ‘adjust pump by up to 4 hours to new timezone’ I was exactly on a 4 hour time difference so went for it and adjusted to that time at airport. A combination of that plus the inactivity of a 7 hour flight meant blood sugars of 18. Temporary Basal Rates were applied- 180% eventually did the trick! On the way home I kept the pump in the time zone I had adjusted to until I landed and then changed it in two 2-hour slots. All bloods in range 😁

• Take loads of cannulas! I did- but I was still surprised at how many I used! Going in and out of the pool or the sea and getting hot meant they were easier to accidentally knock or pull off.

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*The beautiful Nasimi beach at The Palm, Atlantis. *

•Frio wallets are fantastic! I had larger one to carry insulin whilst travelling and a smaller pump on for sunbathing at the pool/beach. Kept my pump safe and cool and happy in the sun! ☀️

• Hotter climates make blood sugars run a bit lower (in my experience) but most of mine stayed in 4-6s. My lovely friend had bought a big bottle of orange juice though for topping up, especially before bed.
My hypo night occurred when I had 4 Rossini cocktails (prosecco and raspberry puree) which were lovely but sweet. So I bolused for them but probably shouldn’t have, as when we got home I then spent time grumpily drinking juice, eating biscuits and testing when everyone else was asleep. I tweeted out of frustration about it but it wasn’t aimed at anyone except Mr D! A small price to pay for a lovely night out anyway!

•Holidays are awesome! Take loads of everything- batteries, cannulas, back ups, spares and bikinis! 👙 for peace of mind. I had all my Diabetes kit in a separate bag so I could put it separately at security easily. I also had spares (but not insulin) in my case too.
I now have the post holiday blues, while my friend is still living there- no fair!

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*Frio doing it’s thing at the pool!*

George the pump is off on his travels!

This Friday we break up! It’s been a fun but busy and long half term and we are all ready for a break! One of my highlights this week was ‘Miss, do you spell France (with accent, as in Tour de France) the same as France?’

I am travelling to London on Saturday for YLAG (sadly won’t make it down in time Friday) and then early Sunday morning I’m flying to Dubai to see my best friend who emigrated in August 😁
This will be the furthest I’ve flown on my own before. And the first time my pump has left the country.
It’s taken lots of phone calls to track down a holiday pump (to take as a spare), but I should pick that up Thursday!
I’ve bought a frio for pumps, due to the temperatures out there, and ordered lots of supplies. I’ve also ordered a letter to explain to airline staff that the pump can’t go through xrays.
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I’m a bit nervous about it all!
Any tips greatfully received on time zones, heat and particularly insurance- what do you do to cover the pump?

I’m really excited to get away and see Linzi again and have a bit of R& R too!
Watch this space for updates!!

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Will be nice to share a drink in person!

Pump fashion

Since I made the decision to get my insulin pump I’ve had a lot of conversations on twitter and with friends (T1 and not) about the decision to have something ‘attached’ all the time.
It was what I thought for a long time. I didn’t like the idea of having the pump attached to me 24/7 so I ruled it out without a second thought. Nope, not for me. I liked no one knowing there was anything different unless I chose to tell them.
But one day I decided to look into it. I had seen so many positive comments on twitter that it got me thinking- there must be a reason people choose to be attached- it must be worth it!

When I discovered the benefits, such as a constant ‘drip feed’ of insulin at different times of the day to mimic a pancreas, plus the ability to reduce or increase for exercise and illness, and being able to deliver 0.1 of a unit I was impressed. So I fought and won.

The first day was a bit of a shock, where do you put it?!
90% of the time it now resides in my bra ☺( and as a group of friends mentioned yesterday- you’d never know!) and I honestly forget it’s there.
I can use my Bluetooth remote too, so it can stay where it is.
When I wear skinny jeans or denim shorts it sometimes sits snuggly in my back pocket and at night I have a Lara Croft Utilty style belt ha ha. I can even put my cannula under my bikini so you don’t even spot that.

If fashion/attachment is your worry I would suggest you do what I did. Research the pros, speak to others n maybe even trial it. You may find, like me, that they outweigh the cons! 😬

Spot the pump!

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Wedding/Christening weekend!

This weekend was a busy one!
8am start on Saturday (that’s early, it’s the holidays!) at the hairdressers and then out the house for 9:15 to a friend from work’s wedding.
It was a fabulous day with the service at Bolton Abbey and a lovely wedding breakfast and evening do at Conniston Cold Hotel.
Morning blood: 4.2, pre service at 12ish: 5.2. But then by 2pm it was 13 (still no food at that point, although we had only sat in the car and i’d had a couple of polos!) Hmm.
So I had a sandwich and bolused plus correction, no problem.
Around 5pm I felt a bit odd- blood had gone up to 17.1. Another pump correction but that didn’t make a dent in it.
So I made a mad dash to the car – where I’d brought every spare possible luckily- and did a set and line change and a pen correction. I just made it back to the table before the bride and groom’s big entrance- phew!
Luckily the meal was fairly low carb- salad and a tomato and vegetable stack with baby vegetables.
Pudding was chocolate mousse and Creme brûlée (we shared). To be honest at this point I decided Diabetes could just shush and had pudding.
Many tests followed plus lots of post pudding dancing and I was back at 5.2 later on 😁
I honestly think my spanx under my posh dress disagreed with the cannula- girl problem! Which caused a lot of laughs when I shared with the group! New higher up cannula was fine!

We enjoyed testing a regular coke- 30.1 wow! Then 4 of us tested to see who would win- I came second ha ha. Never done that with work friends before! (Was possibly the influence of the free bar)

We stayed with friends and I woke to a 6.2. This would NEVER have happened on MDI after a night out and meant I enjoyed my croissants!
Then we came home and went straight to my best friend’s nieces christening which was a lovely day too.
Bed by 9- we are getting old!
Roll on another few weeks of holiday fun and steady bloods! Xx

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Summer holidays

Well I haven blogged in almost 2 months now (although I’m never off twitter ☺)
The last few weeks at school were fabulous but very very hectic. Summer production of Oliver, Rainbow Week, reports, sports day etc and all in the boiling heat too!
I was pleased with my bloods generally during the mayhem, although I have got through many a juice carton!
I’ve now done every type of bolus ha ha and it was really nice of my friend this weekend to comment how I ‘just do it all’ and live my life like everyone else- wine and cheeky take aways included! (using my pump and extended boluses to full advantage!)
A few weeks ago I attended my first YLAG weekend and loved it. It was so nice to be with a group of T1s my age who were all positive and who wanted to make a difference for the better. We made lots of progress with the projects and I also got to know the group more and have a laugh.
Interestingly the overwhelming majority of the group had insulin pumps and were really encouraging about them which helped me as a new pumper. I couldn’t help think this was because these were the kind of people who fight for the best treatment and services and don’t take no for an answer. 😁
I was totally envious of the other Accu- Chek pumpers who had coloured bumper cases for their handsets. Thanks to a tip off I now have one- love my pink accessory. I need to track down pump stickers next!

I have my first post pump appointment in a couple of weeks and I’m interested to see my Hba1c, ask some questions and give some after care feedback 😕

Happy Holidays- cheers!

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