what is your experience of access to diabetes care?

desidiabulum

Well-Known Member
Messages
704
Hi all. Diabetes UK are trying to find out what is happening on the ground with diabetes services across the UK. Information will help them map issues and identify those areas where more needs to be done to ensure people with diabetes are provided with the essential care they need and expect.
Could you please post an answer on this thread to the following question before June 28th:

What issues are you aware of or experiencing in relation to the access or delivery of diabetes care? For each issue, please include the location (postcode/CCG).

On June 28th I will forward all the information to Diabetes UK.
I know that some of you are unhappy with aspects of Diabetes UK's policies, but they are the most powerful pressure group that we have (and certainly are the group that the government pays most attention to), so this could be a valuable way of bringing deficiencies in care provision to the attention of national bodies.
 

kellibabi

Well-Known Member
Messages
84
When first diagnosed, I was given a prescription for various tablets. NO advice about what they did/what they were for etc, NO dietry advice, NO information on where to get help or support.

When doing my course (T2 - DESMOND?), I was the youngest person there - everyone else was in their late 60's/early 70's.
They all talked about cooking their breakfasts/lunches, walking the dog during the day etc. It was very focused on this age group.
I'm in my 30's & work full time & couldn't identify with them. I wanted to learn how to deal with diabetes as a (sort of) middle aged person who frankly doesn't have the time to waffle about cooking a breakfast, can't go home for lunch & doesn't have the luxury of wandering off from my desk for an hour or 2 to go for a stroll.

Diabetes 'care' seems to be a rare thing indeed. DUK only seem interested in T1.
Many of us (T1's included) have to find our own help & support via sites & forums like these.
As many 'professionals' seem unwilling to listen/care, it would seem people on this site have managed to 'step up' & care for/
give advice to others even when they have a lot to deal with themselves.
 

sparkyrich

Well-Known Member
Messages
197
At least you've had a course! I had a similar experience when first diagnosed ( actually, I'm a T2, after reading some of the other threads I'm not sure if that counts as a diabetic) with the exception being a photocopied couple of sheets by way of instruction/information.
I've discovered more on here ( special thanks to Daisy for the newcomers info) by reading the various threads than I've ever learnt from my medical centre


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desidiabulum

Well-Known Member
Messages
704
Thanks for your contributions thus far.
Just to clarify, there are 15 checks/services that you should have access to:

1 Get your blood glucose levels measured at least once a year. An HbA1c
blood test will measure your overall blood glucose control and help you and your
diabetes healthcare team set your own target.
2 Have your blood pressure measured and recorded at least once a year,
and set a personal target that is right for you.
3 Have your blood fats (cholesterol) measured every year. Like blood
glucose levels and blood pressure, you should have your own target that is
realistic and achievable.
4 Have your eyes screened for signs of retinopathy every year. Using a
specialised digital camera, a photo of each eye will be taken and examined by
a specialist who will look for any changes to your retina (the seeing part at the
back of your eye).
5 Have your feet checked – the skin, circulation and nerve supply of your
feet should be examined annually. You should be told if you have any risk of
foot problems, how serious they are and if you will be referred to a specialist
podiatrist or specialist foot clinic.
6 Have your kidney function monitored annually. You should have two
tests for your kidneys: urine test for protein (a sign of possible kidney problems)
and a blood test to measure kidney function.
7 Have your weight checked and have your waist measured to see if you
need to lose weight.
8 Get support if you are a smoker including advice and support on how to
quit. Having diabetes already puts people at increased risk of heart disease
and stroke, and smoking further increases this risk.

The care you should receive:
9 Receive care planning to meet your individual needs – you live with
diabetes every day so you should have a say in every aspect of your care. Your
yearly care plan should be agreed as a result of a discussion between you and
your diabetes healthcare team, where you talk about your individual needs and
set targets.*
10 Attend an education course to help you understand and manage your
diabetes. You should be offered and have the opportunity to attend courses in
your local area.
11 Receive paediatric care if you are a child or young person. You
should receive care from specialist diabetes paediatric healthcare
professionals. When the time comes to leave paediatric care, you should know
exactly what to expect so you have a smooth change over to adult health
services.
12 Receive high quality care if admitted to hospital. If you have to stay
in hospital, you should still continue to receive high-quality diabetes care from
specialist diabetes healthcare professionals, regardless of whether you have
been admitted due to your diabetes or not.
13 Get information and specialist care if you are planning to have a
baby as your diabetes control has to be a lot tighter and monitored very
closely. You should expect care and support from specialist healthcare
professionals at every stage from preconception to post-natal care.
14 See specialist diabetes healthcare professionals to help you manage
your diabetes. Diabetes affects different parts of the body and you should have
the opportunity to see specialist professionals such as an ophthalmologist,
podiatrist or dietitian.
15 Get emotional and psychological support. Being diagnosed with
diabetes and living with a long term condition can be difficult. You should be
able to talk about your issues and concerns with specialist healthcare
professionals.

Checks and services for children:
Children should receive more frequent HbA1c
measurements and regular weight, height and general health checks from their
healthcare team. Formal screening for complications generally begin at age 12.

Please post if you haven't had access to any one of these (and thankyou -- do please include your postcode -- if there is indeed a postcode lottery, we need to know how it works!).
 

hanadr

Expert
Messages
8,157
Dislikes
soaps on telly and people talking about the characters as if they were real.
My GP surgery gives me all the recommended tests once a year, from eyes to feet.They call me in.
i request an interim HbA1c myself and usually get it at the halfway point. I don't routinely get strips, but if I'm poorly [so far once this year!] I can get a pack, otherwise Ibuy my own. My surgery is in West Berkshire
Hana
 

Hez14

Active Member
Messages
37
I get my regular checks but that's it. GP's and DNS don't listen to what you have to say. If feel more isolated and because I do read and I am well educated on my condition they don't like that. I was told by my DNS that it was my own fault I had diabetes and told me I are to much! She never even knew what I ate. I was ridiculed because I followed a low carb diet which was helping. I was unable to tolerate any of the oral medication but they wouldn't look at investigating if I had type 1.5 I was overweight and therefore type 2!

I am completely dissatisfied how I get treated but have nowhere to turn its very sad.


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Daibell

Master
Messages
12,652
Type of diabetes
LADA
Treatment type
Insulin
I'm currently receiving excellent care from my DN. Previously, however, I was frustrated at being labelled a T2 because I wasn't a T1 was I despite being underweight. I tried to move to insulin when tablets failed to work anymore but this was refused. Finally my GP saw the light and moved me to insulin which has really worked for me. So, in summary, GPs seem reluctant to recognise Type 1.5, do the appropriate tests and don't prescribe insulin early enough when it's need is obvious (my GP said it was a last resort; really?)
 

tizzy

Well-Known Member
Messages
256
I don't understand why insulin is a last resort when it is what your body needs why pills and potions that can have side effects or worse what did people take after insulin came about and before pills were invented perhaps I am Nieve about this but if its hypos meds do this as well maybe someone has the answer for me


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