Pump Supplies Stopped

[KatiesOnlyDaddy]

I have been a pump user for 6 years now.

I did all the training and learned to carb count properly, I am really good at it now and proud of that.

Before I was put on the insulin pump, my levels were horrendous. I spent 24 years of my life in and out of hospital with DKA and felt like death warmed up 80% of the time. I have about 40% vision left and have almost lost use of my legs from neuropathy.

Thing is, I moved away from the city centre 18 months ago and live in a small village. I can't drive, I can't get out and about alone but live alone. I don't know anybody near by. I suffer from depression and severe anxiety so will not travel with anyone I don't know.

There is a member of my diabetic care team that visits a surgery nearby frequently and after repeatedly explaining that I couldn't get to where the team I used to visit are based, they did let me see her on one of her visits.

Now they will not do this again and demand that I see them in the city centre. After many phone calls and missed appointments they have now told me that they will not allow me to order any more supplies for my pump. No batteries, no infusion sets, nothing.

I still have the pump and a few supplies left but they are also trying to get my GP to switch me to pens instead of the vials.

They are giving me a death sentence because I cannot get to them.

Should they not come to me???
That's what a diabetic nurse told me they should do at the hospital.

I have run out of professional contacts to discuss this with.

My control is now becoming worse.

I was told I'd benefit from CGM before they cut me off but that is not something I can get from my GP is it?

I am so confused.
I worked years paying my taxes and National Insurance and now because I live in a nicer part of the country instead of breathing the polluted city air, I have been left to rot.

I have even written to my local MP several times and been completely ignored.

I will not let my daughter (now 5) watch as I become more and more sick and live my life in a care home and hospitals in agony as my health deteriorates. I'm ashamed to say l will end it well before then but she shouldn't have to remember her daddy that way

 

[Juicyj]

Hello and welcome to the forum @KatiesOnlyDaddy

You are in a unique position and yes it's unfair that your being threatened with having your pump supply stopped.

If I was in your shoes I'd find out what the complaints procedure is at your hospital, so call up and find out the name of a person you can write to is and their job title, then sit down and write a letter as you have done in this post explaining your circumstances and how this would affect your life if your supplies were stopped. That person has a responsibility to investigate the case to see if a compromise can be reached.

I appreciate that this may be affecting your anxiety so please try to stay calm, take deep breaths and hopefully you will get a response soon.

 

[KatiesOnlyDaddy]

Thank you Juicyj,
When you say to find the right person and there position at the hospital, do you have any tips on how to do that please? I don't mind having to do the research, just asking as they often make it hard to figure out who the right person is.
To be honest, I had hoped that the local MP would have given me that kind of information or some other contact but the pure ignorance towards me and my situation is shameful.

 

[LooperCat]

Oh, thats horrendous. To add to what @Juicyj says, you should be able to get Non Emergency Patient Transport from the Ambulance Service to take you and bring you home from your hospital appointments, nobody should be left stranded. Sending a big hug to you xxx

 

[KatiesOnlyDaddy]

Thank you,
Yes I used to use the non emergency transport service but often ended up having to give my whole day to an appointment which given the benefits was fine until they stopped anybody travelling with me unless they needed to help me administer meds during the journey. This became a big problem as my panic attacks became worse.
I often feel I am asking a lot but when I think about the cost to the NHS when I am spending a lot of time hospitalised, I feel that it isnt much to ask.

One of the diabetic nurses is frequently visiting a surgery just down the road to me and she saw me there once but they now refuse to even consider letting me see her there regularly.

I have given nothing but praise to the team over recent years and now I feel the way I am treated by them is despicable.
They even offer home visits to people that live within the city but I feel they see me as an inconvenient outsider now I don't live there

 

[Rachox]

Sorry to hear of your situation. Maybe PALS is the way to go with your hospital?
https://www.nhs.uk/common-health-qu...t-is-pals-patient-advice-and-liaison-service/

 

[kitedoc]

You have not said much about your GP. Does he or she visit you at home?

And what part has he/she played trying to stop your rights being trampled on?

The support of a group who can write letters and such for you and help be your advocates as @DCUKMod suggests sounds like a good start and maybe they can get your GP to do more.

Whether you need to be represented in terms of your country's antidiscrimination laws would require your advocates to seek a legal opinion for you.

With financial pressures on a health service in any country, health professionals seem to lose their sense of humanity all to quickly.

This is unconscionable whatever their reasons.

Please let us know how things progress so that you have support, suggestions and the wherewithall to fight your corner.

 

[DCUKMod]

@kitedoc - I can only think you have tagged me in error.

Moving onto the OP; @KatiesOnlyDaddy . KatiesOnlyDaddy, I suggest you call the Diabetes UK Helpline, to talk to someone about this. They have a wealth of specialist knowledge that could be helpful. The details for England are near the top of the page, with the Scottish details further down:

https://www.diabetes.org.uk/how_we_help/helpline

Good luck with it all

 

[LooperCat]

There is also a “volunteer car driver” service in most Ambulance trust areas that might be able to help.

 

[Juicyj]

Thank you Juicyj,
When you say to find the right person and there position at the hospital, do you have any tips on how to do that please? I don't mind having to do the research, just asking as they often make it hard to figure out who the right person is.
To be honest, I had hoped that the local MP would have given me that kind of information or some other contact but the pure ignorance towards me and my situation is shameful.

The easiest way to do this is to simply call the hospital and speak to reception and ask them what their complaints procedure is and who you can address a complaint to, they have a policy in place for managing complaints so should tell you this.

Your local MP sounds about as much use as a chocolate teapot so don't waste any more energy on them, just call your hospital now and find this out so you can draft a good letter, best wishes J

 

[Seacrow]

I hate to say it, but I can see the point of the diabetes team. It's possible you have moved out of the area they have responsibility for and they are no longer required (or paid) to help you. In sending a person to your home they are taking at least half a day to see one person, but at the clinic they could see five or six - it's a matter of using resources as best they can. Similarly, if the nearby surgery list is full, you can't expect someone to be thrown off to make room for you. I also understand that they can't allow you to keep going with the pump if you are unsupervised, although why they couldn't let the GP supervise you I don't know.

I do have sympathy for you, your situation sucks. I too live in a more rural town, 30 miles from my clinic and each appointment takes an entire day with travel. Sometimes the nhs staff really don't realise what an effort it takes.

 

[lucylocket61]

Thank you,
Yes I used to use the non emergency transport service but often ended up having to give my whole day to an appointment which given the benefits was fine until they stopped anybody travelling with me unless they needed to help me administer meds during the journey. This became a big problem as my panic attacks became worse.
I often feel I am asking a lot but when I think about the cost to the NHS when I am spending a lot of time hospitalised, I feel that it isnt much to ask.

One of the diabetic nurses is frequently visiting a surgery just down the road to me and she saw me there once but they now refuse to even consider letting me see her there regularly.

I have given nothing but praise to the team over recent years and now I feel the way I am treated by them is despicable.
They even offer home visits to people that live within the city but I feel they see me as an inconvenient outsider now I don't live there

https://www.mind.org.uk/information...s-introduction/support-services/#.XRzkb-v0nIU are good people to get in touch with for this situation. They can advice you on how to make sure your mental health needs are met for support in both your daily life, and for medical situations you find challenging. All the best.

 

[KatiesOnlyDaddy]

Thank you, I really appreciate the help as things like this do make daily life stressful and hard to get through

 

[KatiesOnlyDaddy]

The easiest way to do this is to simply call the hospital and speak to reception and ask them what their complaints procedure is and who you can address a complaint to, they have a policy in place for managing complaints so should tell you this.

Your local MP sounds about as much use as a chocolate teapot so don't waste any more energy on them, just call your hospital now and find this out so you can draft a good letter, best wishes J

Okay brilliant, I called the hospital yesterday and was given a physical address and an email address and was advised to send the complaint to both just in case it slips through the net somehow.
Your help is very much appreciated so I'd like to say a massive thank you for taking your time to help this guy that was very close to giving up

 

[KatiesOnlyDaddy]

I hate to say it, but I can see the point of the diabetes team. It's possible you have moved out of the area they have responsibility for and they are no longer required (or paid) to help you. In sending a person to your home they are taking at least half a day to see one person, but at the clinic they could see five or six - it's a matter of using resources as best they can. Similarly, if the nearby surgery list is full, you can't expect someone to be thrown off to make room for you. I also understand that they can't allow you to keep going with the pump if you are unsupervised, although why they couldn't let the GP supervise you I don't know.

I do have sympathy for you, your situation sucks. I too live in a more rural town, 30 miles from my clinic and each appointment takes an entire day with travel. Sometimes the nhs staff really don't realise what an effort it takes.

I can see your point but I have checked and I am within there catchment area at the surgery I saw a member of the diabetic team at before and it is actually part of a group of surgeries who I'm registered as a patient with anyway.
Often when there are no appointments left at the surgery in my village they will send me there, it is literally the next village only a couple of miles away.

I can appreciate that there are a lot of patients to see on one day by the visiting diabetic nurse but they could actually do everything from the main clinic as I can upload all my pump info online and follow there advice. The pump is not a new thing for me by a long shot so I can follow a few instructions and contact them should I have any troubles but they are not interested.

I know I sound like I'm just complaining about the same things over and over but without stable control through use of the pump, I will be dead within a couple of years and they told me that themselves.

Thanks for your comments Seacrow. I do appreciate your input, even the more negative part as it does show me whether I have more expectations than most.

 

[KatiesOnlyDaddy]

@kitedoc - I can only think you have tagged me in error.

Moving onto the OP; @KatiesOnlyDaddy . KatiesOnlyDaddy, I suggest you call the Diabetes UK Helpline, to talk to someone about this. They have a wealth of specialist knowledge that could be helpful. The details for England are near the top of the page, with the Scottish details further down:

https://www.diabetes.org.uk/how_we_help/helpline

Good luck with it all

Thank you DCUKmod.

I don't know why I haven't thought of contacting them myself already.

I will be certain to try and contact them next week and see how they can help.

Seriously though, everybody, you are being so helpful and I never even realised there was such a large community of diabetics and health advisers etc that could give so much valuable information.
I really do believe that diabetic nurses and consultants should tell people about this service and app. It could take a considerable amount of strain off there shoulders.

 

[Juicyj]

I wish you all the luck in getting this sorted, I can fully appreciate the anxiety this has caused too so hopefully a resolution will come soon.

 

[Seacrow]

I can see your point but I have checked and I am within there catchment area at the surgery I saw a member of the diabetic team at before and it is actually part of a group of surgeries who I'm registered as a patient with anyway.
Often when there are no appointments left at the surgery in my village they will send me there, it is literally the next village only a couple of miles away.

I can appreciate that there are a lot of patients to see on one day by the visiting diabetic nurse but they could actually do everything from the main clinic as I can upload all my pump info online and follow there advice. The pump is not a new thing for me by a long shot so I can follow a few instructions and contact them should I have any troubles but they are not interested.

I know I sound like I'm just complaining about the same things over and over but without stable control through use of the pump, I will be dead within a couple of years and they told me that themselves.

Thanks for your comments Seacrow. I do appreciate your input, even the more negative part as it does show me whether I have more expectations than most.

I think a home visit is expecting too much, but there's absolutely no reason you can't be 'supervised' by a combination of your local GP and remote access to DSNs. I physically see my consultant every six months, but any query goes to the DSN team, usually via email, but there is also a 24/7 'panic' phone line too.

It may be worth digging up all the NICE and nhs treatment statements/guidelines and laying them out in a letter for hospital management/complaints department - proof of what should be happening by their own rules. I think there's some treatment vs. quality of life guidelines as well.

If you are still in the same area, then they are theoretically required to treat you to the best of their ability, which in your case would include providing a pump (and bits etc.).

 

[ronialive]

offer skype and ask how this fits with the equality act 2010.
take it to you mp and the ccg

good luck

I have been a pump user for 6 years now.

I did all the training and learned to carb count properly, I am really good at it now and proud of that.

Before I was put on the insulin pump, my levels were horrendous. I spent 24 years of my life in and out of hospital with DKA and felt like death warmed up 80% of the time. I have about 40% vision left and have almost lost use of my legs from neuropathy.

Thing is, I moved away from the city centre 18 months ago and live in a small village. I can't drive, I can't get out and about alone but live alone. I don't know anybody near by. I suffer from depression and severe anxiety so will not travel with anyone I don't know.

There is a member of my diabetic care team that visits a surgery nearby frequently and after repeatedly explaining that I couldn't get to where the team I used to visit are based, they did let me see her on one of her visits.

Now they will not do this again and demand that I see them in the city centre. After many phone calls and missed appointments they have now told me that they will not allow me to order any more supplies for my pump. No batteries, no infusion sets, nothing.

I still have the pump and a few supplies left but they are also trying to get my GP to switch me to pens instead of the vials.

They are giving me a death sentence because I cannot get to them.

Should they not come to me???
That's what a diabetic nurse told me they should do at the hospital.

I have run out of professional contacts to discuss this with.

My control is now becoming worse.

I was told I'd benefit from CGM before they cut me off but that is not something I can get from my GP is it?

I am so confused.
I worked years paying my taxes and National Insurance and now because I live in a nicer part of the country instead of breathing the polluted city air, I have been left to rot.

I have even written to my local MP several times and been completely ignored.

I will not let my daughter (now 5) watch as I become more and more sick and live my life in a care home and hospitals in agony as my health deteriorates. I'm ashamed to say l will end it well before then but she shouldn't have to remember her daddy that way

 

[Banacheque]

Talk to PALS in your hospital they have a desk in ALL hospital and are excellent representing the patient / person at least you know they will help it is like having a legal representative. Ring your hospital and ask to speak Patient Advise Liaison Service
Hope this helps