Email from DSN

Status
Not open for further replies.
shiv

shiv

Well-Known Member
Relationship to Diabetes
Type 1
As most of you know, I am currently 'trialling' a pump from Selly Oak hospital (South Bham PCT). It was originally a 10 week trial cut down to 2 weeks, which I was a bit unhappy with but just happy I was getting the chance to trial it in the first place. I was told I could pretty much keep hold of the pump until I got my own funding. Or at least that was the impression I got. DSN gave me some supplies to take away with me (quicksets and reservoirs) and told me she would post me down more when I needed them.

Except I got this email today.

"Hi Siobhan

I have got your results from the trial and will be speaking with Dr. N about funding.
Unfortunately I am not able to send any consumables at the moment. We have recently used all of our supply and finance have put a temporary block on further orders, I will try the rep but the likely hood is that you will need to revert back to your injections as we discussed until we get a decision on funding from the PCT.

I’m really pleased that the pump seems to be working for you and hope we can get a favourable outcome.

Speak to you soon

Becky"

To say I am upset right now is an understatement. I feel very fobbed off and as if she's yanked the rug from under my feet. Somehow I feel like what she is saying is a bit too convenient and a bit of a story, to be honest.

I emailed her back saying that the 'results' of the trial - whatever the heck that means, I presume the week's worth of results I sent to her?! - aren't a fair example of the benefits the pump has given me.

What annoys me too is that she hasn't been in touch at all since pumping - it's always been me chasing her. So would she have let me run out before telling me that I couldn't have any more?

Please excuse me whilst I go and smack something.
 
Last edited by a moderator:
ah Shiv that sucks 😡

why do they do that??? how can you just have a pump for 2 weeks and then revert back to injections? surely that doesn't qualify as a trial?

I really hope they sort something out for you.
 
That's awful Shiv! How can they provide something as important as a pump and then allow a situation where it can't be used because of a few pounds on consumables? Really sorry this has happened, I hope that they are able to find some way of letting you continue. As you say, you've hardly begun to demonstrate how good the pump is for you.
 
When people are told to keep a diar for anything, they are advised it needs to be at least six weeks. Two weeks for anything as important as a pump seems hardly any time at all.
 
The d community has pulled through - I've had lots of offers from people on facebook and the CWD list offering to send me supplies. So in that sense, I have sorted it out myself - but this doesn't exactly make me want to stay with South Bham PCT, but if I move I lose the pump altogether. Catch 22!!!!
 
What pump and sets etc are you on? I have 5 boxes of 10 Medtronic quick-sets 6mm canulas, 60cm lines all unopened.

Free to good home, contributions for P&P welcomed.

Martin

EDIT: bit slow on the reply there but the offer stands 🙂
 
shiv said:
The d community has pulled through - I've had lots of offers from people on facebook and the CWD list offering to send me supplies. So in that sense, I have sorted it out myself - but this doesn't exactly make me want to stay with South Bham PCT, but if I move I lose the pump altogether. Catch 22!!!!
Click to expand...

Perhaps if this enables you to hang on to the pump for a while longer, the benefits will become more apparent and you can go to somewhere like Bournemouth or Brighton (or wherever it was that Tom got his from!). If you have clear evidence it would be hard for them to turn you down, especially if the PCT is pro-pump.
 
So sorry, shiv.

I think this is disgraceful. Two weeks is nowhere near long enough to start seeing the benefits of a pump and difference in BG.

As you say, this story seems to be a bit convenient, and it seems as though your DSN has been unsure about funding all the way along. If there was any doubt about prolonging your time on the pump beyond 2 weeks they would have been better leaving you on MDI - I found the switch to pumping quite difficult, and I had a number of hypos and rebound highs. I can only imagine the effect of switching twice within 2 weeks.

Definitely do not let it go. I think a formal complaint is called for - I would go as far as to say that only two weeks on a pump would do more damage than good. Keep pushing and pushing and pushing.

I've noticed on some previous threads that apparently you can go to any PCT in the country for your care if you so wish (sorry if I've got the wrong end of the stick on this one). It may be worth looking into this to see if you can get a pump elsewhere. I know travelling to and from appointments might be difficult, but I think it would be well worth it to get pump funding.

Let us know how things go. Big hugs to you.
 
Hi Shiv,
As offered on the other list - I have a couple of box's of quick sets you can have and maybe some others - will have a look in the cupboard later - your very welcome to them.🙂Bev
 
Shiv,

Given that we're both in Brighton I've got some Quicksets and reservoirs so I can pop around and give you them today if you want me to. I can also put in an order for you if you want.

Tom
 
I'm horrified by your team, hang onto your pump as long as possible, except the offers of spare sets etc from those that offer..

I would contact the DSN or better still your consultant.. And start putting presure on them to sort funding out yesterday not tomorrow etc...

Another very good source of help, is INPUT http://www.input.me.uk/ John Davis and Lesley Jordon are very helpful in cases like these, give them a phone they won't take long to get back to you..

As to funding remind your consultant that if he says you need a pump, the pct can't refuse funding it's against the law..
 
Thanks everyone.

As the pump is owned by the hospital, I think that by rights they can do this.

My plan is as of today, to log every single thing related to the pump (carbs, BG, activity, illness, all that good stuff) - to show how much of a benefit it is being. My DSN is showing the 'results' (??? the week's worth of BG levels I've sent her - told her I don't think this is a fair representation of the benefits I've had) to the consultant today to see if he will apply for funding.

If he says no, I will upship from South Bham and get myself down to East Sussex PCT. Where I will have a logbook of benefits to show them, for pre pump and whilst using the pump. So hopefully that will help if I have to apply to another PCT.
 
shiv said:
Thanks everyone.

As the pump is owned by the hospital, I think that by rights they can do this.

My plan is as of today, to log every single thing related to the pump (carbs, BG, activity, illness, all that good stuff) - to show how much of a benefit it is being. My DSN is showing the 'results' (??? the week's worth of BG levels I've sent her - told her I don't think this is a fair representation of the benefits I've had) to the consultant today to see if he will apply for funding.

If he says no, I will upship from South Bham and get myself down to East Sussex PCT. Where I will have a logbook of benefits to show them, for pre pump and whilst using the pump. So hopefully that will help if I have to apply to another PCT.
Click to expand...


Shiv, a young boy had this problem on the list (Scotland) and eventually they caved in and he kept his pump - as his mum said 'we wont remove the pump and they cant - so how can they get it back'.🙂Bev
 
That is such a shame, I would be really upset if it happened to me.

I wonder if you can speak to your DSN on the phone and find out what has happened. It does seem an odd way of doing things by offering a trial period before getting funding.

I would say that I would expect you to be contacting your nurse rather than her contacting you. Maybe I have misunderstood this though.

Hope you can get the situation sorted soon
 
shiv, if i had a medtronic i would certainly send you some. 🙂
 
Last edited by a moderator:
Oh Shiv, that's ridiculous! :( It's awful that they give you a pump for a 'trial' & then decide there's no funding - talk about dangling the carrot then whipping it back!!

As for any decision being made on the basis of one week's results, I was told it can take as much as 3 months to get used to the pump and reap the benefits - during that initial week the dregs of your previous long acting dose will still be acting anyway, so how can that be truly representative of how you will be long term on the pump?! :confused: This is such an unfair situation!! 😡 Honestly, as well as contacting INPUT, I would get in contact either face to face or on the phone with your consultant asap to try & get him/her onside, and speak to your local PALs (Patient advice & Liaison service I think?!) service too - if doc's not supportive I'd seriously be itching to give my mp a call at that point!! (maybe that's just me getting stroppy in my old age though!).

For what it's worth, I think they are being really unreasonable - fingers crossed you manage to persuade them to pull their finger out & 'find' the funding!! Best of luck & let us know if we can help in any way!
 
sofaraway said:
I would say that I would expect you to be contacting your nurse rather than her contacting you. Maybe I have misunderstood this though.
Click to expand...

My issue is her total lack of communication. I've just switched from almost 20 years of injections to insulin pump therapy and I got no advice or help pre pumping (such as on the day when I should have, if at all, take the lantus) nor have I had any help from her since I got connected. She has had no input, despite requests, on adjusting my basals etc.

She knew the amount of supplies she gave to me, and had said when I got connected she would send more to me in the post. So I would have expected her to let me know that she would not be able to do this, being as I was going on the expectation of being able to get more.
 
Shiv, I'm another one with a cupboard (well, wardrobe :D) full of 6mm/60cm Quicksets and reservoirs. I've got the 3ml reservoir, but might have some smaller ones still knocking around if that's what you're using.

Offer stands in general, not just for right now - if you need stuff, drop me a message.
 
Shiv,

As I said on FB, I am completey gutted for you. I know if this had happened to me I would be inconsolable.

Its disapointing this news came to you in an email, but I guess now thats not the point.

I think Ellies suggestion about John Davis is excellent and bang on target. like I said on FB, I suggest you contact the local rag, even your local MP- they love a story like this and any publicity will help.

I fear that even if you aquire supplies, that you will have to return your pump with a deadline....I get the impression that these things are closely monitored.

Shiv, anything I can do to help please ask.
 
Thanks all. I have had so many offers of help, I really think I will be absolutely fine to 'supply myself' for the next couple of months, if I choose to stay with Bham PCT.

I have not told the DSN about all the offers of supplies I have had. Nor has she mentioned sending the pump back - I'm certainly not going to mention it first! I will wait until she asks, to put it frankly.
 
Status
Not open for further replies.
Back
Top