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MERSEYSIDE - Advice on Care

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lazypancreas

New Member
Relationship to Diabetes
Type 1
I was diagnosed with Type 1 diabetes around 3 months ago and have been attending Arrowe Park Hospital in Wirral.

I am injecting insulin and also taking metformin.

I have had problems with the diabetes team, particularly the specialist nurses - they do not return urgent telephone calls, answer their pagers or contact when they say they will. I have been contacted only twice this year, and i feel that this is not good enough when i am injecting a strange drug for the first time, and only been diagnosed 3 months ago. All of the knowledge i have is from colleagues who have diabetes or from the balance magazine. I feel that this is quite dangerous - for instance, I found out by accident that insulin expires after 28 days. I also did not know until last week (when I read it on the internet) that carbohydrate affects blood sugar. I had to specifically ask for my first eye appointment although I mentioned that I was told previously I had cataracts (I am in my 20s!). I was told I urgently needed to see the Professor due to my high GADS test but had to leave nine messages (over a period of 3 weeks) before I could speak to a DSN to make an appointment and find out why it was urgent. I have asked for a B12 screening due to extreme tiredness and a tendancy towards deficiency in my family (also knowing that metformin can affect B12). The results are back but the DSN cannot understand them. She stated she would get back to me at the start of the week - still have not heard anything, even though I have left three messages.

To them I am not important, I feel like I am fighting all the time.

I feel that I am an intelligent person and am keen to learn more about diabetes - I am not getting this opportunity. My PCT do not run DAFNE courses anymore.

Although I fully appreciate that NHS cuts have hit every diabetes clinic and particularly the specialist nurses, I feel like I am totally alone at a scary time. I also feel as though they both make promises regarding the level of contact and support offered and then constantly let me down. As a result, my family are very anxious as it seems as though the DSNs are the main point of call. I would not mind so much if they were honest about this at the point of my diagnosis. They stated they would ring me twice a week initially - I have had two phonecalls in 12 weeks! The stress and anxiety around all this is making me feel worse about everything, when it is all hard enough to digest as it is!

The reason for my post is - does anyone have any good experiences of hospitals in the Merseyside area as I am looking to move but do not want to be in the same position.

Are my experiences typical? I feel really alone and when I have spoken to my GP about it, he tells me to speak to the professor at the hospital.

Hope you can help, look forward to hearing from you,
 
Hi lazypancreas. Welcome to the forum 🙂

I'm sorry to hear that you've been left dangling. We do hear many tales similar to yours and you're right, it isn't acceptable.

I've no experience of Merseyside but we do have members who do, so hopefully they can give you some pointers.

A good book to buy if you can is "Type 1 diabetes in children, adolescents and young adults" by Ragnar Hanas. It's very well written and will tell you all you need to know and more.

ROb
 
Thanks Rob, my mum has just bought me a new book, hopefully its this one, if not I will buy it!

Thanks for your help
 
Hi Lazypancreas,

I think a lot of people will be able to identify with your experiences sadly. DSN's are often overworked - but there is no excuse for ignoring you. I know that 'Alder Hey' has a good reputation for paediatric diabetes care - but not sure if this is the same for adult care. If I were you I would put all this down in a letter or an email to the Professor and explain that you feel abandoned at a time when you need support and help. I do know a lot of parents who have asked for a referral for their child and moved to better clinics and it is a relatively easy thing to do as it is in the 'patients choice' charter. You only need to ask your GP for a referral and dont need to give a reason why. I hope you get this resolved or move on to another team who can offer you the support you need.🙂Bev
 
Thanks Bev, I will write to the professor and see if that does anything. Thanks for your help and support 🙂
 
Sadly sorry another one who can't give info about clinic's in your area..

But you can contact the hospital PALS team, and they will also help you to sort this out, it's very unfair indeed..

Not sure what book your mum brought you but two good books are

Using Insulin by John Walsh
Think like a pancreas by Gary Scheiner

Also look at this site

www.bdec-e-learning.com its a carb counting course designed/run by Bournmouth Royal hospital diabetic clinic, very good source of information
 
I was 29 when diagnosed and referred to the Royal.

I spoke to a DSN about insulin and to a dietician.
The first couple of weeks I had regular calls from the DSN to amend the dose but once they were happy with the dose the calls became infrequent - though I was told I called call if I needed to. At that point I was advised to eat x carbs at breakfast y at lunch etc - so there wasn't much flexibility but the got me into a routine. I did a carb counting course a few years back.

There are a number of nurses at the Royal and I have had variable experiences - one problem is a lack of continuity as you tend to see whoever is covering the clinic and then they contact you (or not) till you are next at clinic and you potentially see a different nurse who may contradict the previous one. Some are more proactive than others.

The other issue with a teaching hospital is that you rarely see a consultant, you some times see a registrar but it could be a senior houseman.

The web-pages for the Royal are

http://www.rlbuht.nhs.uk/our_services/diabetes.asp

Those at Aintree are

http://www.aintreehospitals.nhs.uk/hospital_services/diabetes_endocrinology.asp
 
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