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Self-help on the NHS?

  • Thread starter Thread starter mrspuddleduck
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M

mrspuddleduck

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I apologise in advance - this is more of a rant with a bit of that kind of humour that comes with total 'what the hell'......

Im LADA/Type 1 due to my pancreas being in the process of dying. It was agreed last December that I was finally a type 1 in waiting, in February that I needed to be started on insulin, got a Consultants appointment in April who did various tests and stated that I would be started on insulin in two weeks....... Meanwhile my day time bloods have not gone below 10, usually in teens and often up in the twenties, my weight has dropped rapidly to 8st (Im 5'7") and to say I feel unwell is probably putting it mildly.
Finally got a letter today with a prescription for insulin included, letter says here's your prescription, the community diabetes specialist nurse (CDNS) will sort you out. I have no idea who this CDNS is, where they are based, how to contact them. I do know I was referred to them in March........
Now I know the NHS is in a mess, there are more cuts to come and my health authority is in special measures, but 'have a stash of insulin pens and get on with it' seems a little bit drastic!!
Do you think Im being unreasonable due to my constant hyper state???

Sue
 
That seems very wrong.
I am also LADA, with insulin pen at the ready but not used.
My hospital nurse has told me to contact them immediately I feel I need to go on insulin. Then they will hep / advise on how / what to do.
When I was first given my pen (prescription though hospital, but via my GP) I wasn't sure how to work it, and indeed although given the pen i was not given any insulin or needles to go with it. Walked into the diabetic hospital, and within a few minuites a nurse came out and spent 10mins showing me what to do (and giving me a needle and insulin to go with the pen). And told if I have any more questions to just pop in or phone them. So actually very helpful at the hospital.

Give them a call. Tell them you need some help..... Or just call into your local diabetic hospital. I am sure they will help.
 
No your not being unreasonable, as Ian suggests contact your local hospital diabetes clinic and ask if you can speak with a DSN, if they are not available they will return your call as soon as they are.
 
@mrspuddleduck - you have been treated outrageously! I think community diabetes nurses are the ones who do the rounds of various GP surgeries. Personally, I insisted on being referred to the hospital and get my treatment there - they really are more used to dealing with Type 1. As the others have said, ring the diabetes clinic of your local hospital and ask them for help. I was in a a very similar situation to you when first diagnosed and it made me really ill - I wish I'd known to walk into the diabetes clinic and ask for help - it would have saved me months of illness.

Smidge
 
Thanks Smidge. The GPs diabetic nurse doesn't see me any more because they referred me to the hospital based nursing team in February. The way my health trust works is its spread over five hospitals and appointments could be anywhere! So despite the Consultant referring me too, my two referrals are somewhere in cyber space and until they are allocated to one (of the five) hospital teams, I have no way of knowing who to contact. All the GP can do is re-refer ( in all fairness she has shouted at everyone!), and my own persistence has resulted in the letter I got this week. Now I have to start again, insulin prescription in hand, phoning the GP, the Consultants secretary and anyone else I can think of until I manage to actually identify the nurse I'm supposed to see. Then of course I have to wait for yet another appointment! That's what I meant by self help on the NHS! Wish me luck but to be honest I'm so exhausted and poorly now I'm almost at the point if giving up. :-( Sue xxx
 
You have been treated badly. My surgery handles all forms of diabetes and I had a lovely DN who got me onto insulin in the suregry. My diabetes GP referred me to her when insulin was called for. The DN had worked in the hospital diabetes clinic so I was lucky. My new DN is less experienced but is very nice. Your GP is responsible for your health so you must insist that they get you going properly on insulin if the hospital can't get their act together. If the surgery has no insulin skills then then need to sort out the hospital ;they can't disown you. Do ask any questions on here if you get no-where.
 
Complain to PALS at your hospital or Healthwatch who are totally independent.
It will not be detrimental by doing this.
They are being negligent towards your health...if you need insulin, then delaying it for whatever reason is not good for your health.
I have had dealings with PALS and Healthwatch and sometimes this is the only way to get things done.
For 4 years I was missed off for follow up appointments to my pump clinic...i had to phone every single time despite them being given notes stating 6 months by consultant. The onky way forward with this was to go to PALS. They did investigate and even got my consultants secretary to phone me and squeeze me in....the Secretary even offering to make the appts for me in the future!! (I declined tjis as its a fault with their appt system and not the Secretarys job to handle mistakes in systems!!).
No comeback on me for doing so...
My next appt is scheduled for 2 months... So I'm just waiting to see if the problem is resolved... If it isn't I will take it up with the CEO of the hospital.
 
Thanks everyone. I'm so exhausted from all the running around that I was beginning to think it was me! You support really helps!! Sue xx
 
Woohoo!!! So my GP had a major tantrum this week. Said she was horrified that I've heard nothing from the hospital diabetic nurses ( nope still haven't!), and that she couldn't watch me getting iller and iller. She then sorted me out! Started me on insulin, spent an hour at the end of surgery going through everything with me and booked me back in with the GP diabetic nurse, saying we will look after you from now on because we can't trust them to do it! (She was really mad!!!). Been on insulin 4 days, b/s still way too high but dose being increased after a week and I can't believe how much better I feel already!! Sue xxx.
 
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