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Type 1 Unhappy with care received at local hospital

J

janejanejane

Member
Messages
7
Type of diabetes
Type 1
Treatment type
Pump
I have just graduated from university and moved back home. This meant that I had to change hospitals. I very unhappy with the care I am receiving at my new hospital and don't really know what I can do about it so would appreciate any advice.

At little more about my situation: I was diagnosed in 2009 at my home hospital and then move to university in 2010, I decided to move my treatment to my university hospital (250 miles away) as even then I did not like the treatment I was receiving at home. I was put on an insulin pump in 2013 and it improves my hba1c. Now back home, and after my first appointment I was in tears, they patronise me constantly and the doctor hadn't even read my file properly (he asked me if I was type 1 or 2 and was adamant that I was diagnosed in 2010). Now they are not being very proactive about securing ongoing funding for my pump and in 2 weeks I am going to have to go back to MDI.

Can anyone please offer some advise, can I request to be treated at a different hospital? Has anyone experienced anything similar?
 
Sounds similar to my recent experience! You are definitely entitled to ask for a second opinion, not sure how it works but I would try going back to your GP and explaining you are really worried about the local hospitals proposed plans for you diabetes care as you feel its a backward step, and ask for a referral to a different care team possibly in a different health trust. If at all possible try and find out where has a good reputation before going to the GP (ask about, try the NHS choices website some hospitals have reviews, also try different hospital websites which often list the actual consultants and their specific expertise/interests. And generally teaching hospitals are more likely to be more up to date with their treatment options), then you could ask for a referral to that particular team. Good luck Sue xxxx
 
My advice would be not to capitulate. If you have a justifiable case to warrant continuation of a pump - then fight for it.

However I would recommend adopting a tactful approach, as having a strained relationship isn't productive. Intellectual hubris is, unfortunately, very diificult to 'counteract', or reason with.

It's worth familiarising yourself with current NICE & CCG publications, to understand their rationale/advice - then counter it with facts, guidlines, and your own individual circumstances. (I.e: "I've been on the pump for x yrs, I meet the current NICE guidelines, I strongly believe that reverting to MDI will adversely affect my health, My HBA1C has been x for 5 yrs, this wouldn't be feasible without a pump, etc")

For reference, below is a link to a current form to apply for/renew funding for an insulin pump. (excerpt of relevant nice guidlines at bottom of form, full nice guidlines for diabetics available online)

https://www.google.co.uk/url?sa=t&s...cIoCnU&usg=AFQjCNFOvJ_zhKMy0KEdnFBZkGUu5GJ9_A
 
janejanejane said:
Now they are not being very proactive about securing ongoing funding for my pump and in 2 weeks I am going to have to go back to MDI.
Click to expand...

Did they give you a reason why they are not proactive?

The people at Input should be able to offer you advice and support and I suggest you contact them asap, you could also get in touch with your previous hospital diabetes clinic and ask if they can offer any assistance.
 
The funding structure is different. I don't fully understand why but funding at my old hospitals for insulin pumps came from the hospital and at my new hospital it comes from GPs.

I am hoping that my GP will be helpful when I speak to him, but if he puts up some resistance my old consultant has said that he would gladly write a letter for me stating that it is in my best interest to stay on an insulin pump in the long term.
 
Almost three weeks after my appointment my new hospital has not yet submitted a request for funding, even though they know I have limited supplies.
 
That's good to know that your previous consultant is willing to intervene to support your case, good luck with persuading your gp.
 
janejanejane said:
The funding structure is different. I don't fully understand why but funding at my old hospitals for insulin pumps came from the hospital and at my new hospital it comes from GPs.

I am hoping that my GP will be helpful when I speak to him, but if he puts up some resistance my old consultant has said that he would gladly write a letter for me stating that it is in my best interest to stay on an insulin pump in the long term.
Click to expand...
The funding comes from your CCG which is run by a consortium of GP's not your actual GP practice. The CCG is charged by the clinic overseeing your diabetes/pump care. So you need to talk to INPUT and find out exactly who is meant to be paying for your pump supplies.
Can not your consult from the previous hospital supply you with some cannulas and sets to tide you over?
You are entitled to have care where you wish it does not have to be the most local to you.
 
Inepuld just phone your pumpline and order and just get sent to your home address... They probably don't even know of the issues around your hospitals/gp etc.

My pump would send anywhere for me... Caravan site, parents, friends, work.. Anywhere....

Either phone or email... Give address that you need sending to and order enough for a few months...
 
Hi, I agree with all the above suggestions. Just want to add that at any stage if you would like to, making a formal complaint can help improve services for other people, and may give you a feeling of closure and satisfaction.

I get saddened/dismayed whenever I hear about people's health being affected by HCPs who may be patronising, slack or incompetent. They receive extensive training and support that is meant to enable them to provide good care for people, so patients don't fall through the cracks or get treated like children. I don't think there is any excuse for being rude to patients.

So yeah, complaints help HCPs and their managers to learn, and they eventually improve services for ourselves and others. They can be as short as a few paragraphs in an email, and the complaints body must deal with it and get back to you at regular intervals.
 
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