Changing Trusts to More Pump Friendly One - Possible

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MDJ

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Type 1
Hello,

Not sure if this is the right group for this question. If not, please accept my apologies.

I am very keen to move on to a Pump (preferably patch) system. On the surface I'm not sure I qualify due to the fact that my HbA1c is "too good". However, that decent HbA1c is an average that hides the story of the fact that I often run very high and often go quite low. I also get very stressed and worried about night-time hypoglycaemia even with the warning alarms that I get on my CGM. I know this means I meet at least one of the NICE criteria for getting a pump. I spoke to my Consultant about this today and she agreed that she would put me forward for an assessment with the specialist nurses in my Health Authority - which I guess is a start. However she stated that in my Health Authority (East & North Herts) that they are not very pump oriented/friendly and that the waiting list can be up to two years long! I'm 62 so that seems like a long wait to me! She also noted that other Health Authorities are much more pump oriented (mainly because they have the staff resources) and that in some authorities (she mentioned Guys Hospital in London and one other London one which I don't remember the name of) almost all of the Type 1's that wish to be are on pumps!

So, that got me to thinking. Is it possible to change your Health Trust/Authority to a more pump friendly one even if you don't live in that area? I only live in North Herts and work in the City of London quite frequently to getting to Guys would not be an issue.

If this is something that's possible, how would I go about doing this/making it happen? Is there a process that you have to follow or people you should contact first - I've heard of some people contacting the specialist Nurses in some areas to sound them out about the possibilities of changing to that area - to make this sort of thing happen? Has anybody here done such a thing?

Thanks again for any help that anyone can give and apologies again if tis is the wrong place for such a question.
 
Hello @MDJ i haven’t done this myself but I have been told that you have the right to choose where you receive your care and it would need a go referral - here is soem information I found


I recently read of a parent, whose child has T1, who travels 4 hours to another hospital in order to get the tech they prefer.

I hope you manage to get the pump that you want and that it helps you. I am on the Omnipod dash as of earlier this year so happy to answer any questions about this specific pump if you have any,
 
MDJ said:
So, that got me to thinking. Is it possible to change your Health Trust/Authority to a more pump friendly one even if you don't live in that area? I only live in North Herts and work in the City of London quite frequently to getting to Guys would not be an issue.
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I think you will find it's where you live as to who pays the bills and not what hospital you attend.
I live in Cornwall and attend a clinic in Devon, Cornwall pays the bill.

You can ask for a referral to any hospital you want though.
 
Hello @MDJ, I know nothing about pumps but in view of @Pumper Sue's response it occurred to me that you could do some 'homework' and tap into the PALS for East and North Herts to establish 2 slightly different facts:

1. Precisely what pump options are currently funded by East and North Herts?

2. If you were to get a treatment proposal from a London Hospital is it true that the East and North Herts Trust would pick up the bill; if so how does that work in practice and could East and North Herts reject a treatment proposal on the grounds of their inability to afford a treatment?

This second question might prove interesting and pertinent, since East and North Herts is a Trust that sits within the recent much bigger Integrated Care System (ICS) of Herts and West Essex ICS - who (as I understand matters) now have the overarching budget and financial approvals for all Trusts and Primary Care Centres within their geographic region. Before 1 July 22, East and North Herts Trust was administered by East and North Herts Cost Centre Group (CCG).

Getting both those questions answered in writing could not only allow you to seek a pumping solution that East and North Herts Trust already deals with, but perhaps also get something in writing that you can then navigate towards.

There is currently a review going on to improve pumping availability and in particular hybrid closed loop options; Dr (Professor?) Partha Kar is closely involved in that. Hopefully this link will take you to that.


That review is due to be turned into firm proposals imminently (I'm not sure if such proposals will end up more favourable for most of us - I think that is currently up in the air) but NICE have undertaken to move the review outcome forward and publish an updated Guidance Note accordingly. So changes and improvements remain possible by the New Year - but such things are always ultimately dependent on Integrated Care Boards (ICBs) finding the funds for not just the treatments but the Staff to implement the extra technical support.

Skilled staff is a further problem for technical medical services. I gleaned, unofficially, that because Oxford University Hospitals are a prestigious place to complete medical training (akin to London University Hospitals) there is a large turnover of skilled young medical staff in Oxford. Students apply for their training, struggle to afford the Oxford living costs, so on completion of their training move on to places they can afford to live - leaving older staff (some potentially less adept at managing new digital skills) coping with both patient overload and a high commitment (increased workload) to training a continuous flow of younger students that don't stay and so don't 'return' the skills they've just learnt. Over a modest number of years this apoarently becomes an increasing burden and brings its own problems of long serving staff retention within the NHS.
 
I think to be precise it is not where you live, BUT where the GP surgery you are registered with, resides. I say this because our GP is in Coventry whereas we live 100 yds over the border in Bedworth so not simply a different town but a different county - and my hospital D clinic told Roche to send my pump supplies invoice to Warwickshire CCJ whereas Coventry CCJ pay them.
 
trophywench said:
I think to be precise it is not where you live, BUT where the GP surgery you are registered with, resides. I say this because our GP is in Coventry whereas we live 100 yds over the border in Bedworth so not simply a different town but a different county - and my hospital D clinic told Roche to send my pump supplies invoice to Warwickshire CCJ whereas Coventry CCJ pay them.
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When I had a Devon GP and lived in Cornwall, Cornwall paid the bills
Have Cornish GP now and have a Devon Hospital and Cornwall pays.
 
MDJ said:
However, that decent HbA1c is an average that hides the story of the fact that I often run very high and often go quite low. I also get very stressed and worried about night-time hypoglycaemia even with the warning alarms that I get on my CGM. I know this means I meet at least one of the NICE criteria for getting a pump. I spoke to my Consultant about this today and she agreed that she would put me forward for an assessment with the specialist nurses in my Health Authority
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That sounds promising @MDJ

The more robust evidence for pumps was around reduction in hypoglycaemia, and it is the first of the criteria in the old TA151.

Overview | Continuous subcutaneous insulin infusion for the treatment of diabetes mellitus | Guidance | NICE

www.nice.org.uk www.nice.org.uk

particularly where hypoglycaemia is erratic, unpredictable and a source of continuous worry for the person with diabetes. The constant fear of unpredictable hypos is defined by NICE as just as ‘disabling’ as actually having the severe hypos themselves.

The fact that this is a TA (technology appraisal) may be significant for you, since if your consultant says you need this kit on a clinical basis, then the money must be made available by the local health authority. NICE have already evaluated the research and found that it is cost effective based on the sum of the evidence.
 
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