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Discussion in 'Insulin Pump Forum' started by tim2000s, Jul 1, 2015.
Oh I agree 100% with you
Is there a comparison chart anywhere comparing the different features/specs of the various pumps currently available on the NHS? Thanks.
Take a look at the Input Diabetes website. It is a bit out of date but has a table.
thanks - I found a table on that site.
Great thread @tim2000s thanks!
Does anybody know whether, if I self-funded a pump could I then use improved control on it as evidence to get an NHS funded one? Or is it a case of once you go down the non-NHS route you have to stay on it??
To actually have a pump or supplies from a UK based pump firm you need a consultant or a GP letter as they are prescription items.
Many years ago I went down the self fund route and had to fight tooth and nail to get the funding. It's not advised by INPUT to go down this route.
I had a long conversation with a Medtronic rep about this. Turns out they aren't prescription items. It's just that the pump companies don't want to accept liability for misuse and therefore demand that you have a diabetic care team commit that you are being supported and trained such that they are not left in a position of liability. Purely a legal get out. Which sucks.
If you look on your cannula boxes it says RX only which is prescription only so not sure where the rep got that idea from.
I purchase my Cannulas, reservoirs etc direct and are delivered to my home address.
The Pump is purchased and paid for by my Diabetic Clinic (NHS) but they cannot afford cannulas/Reservoirs/inserters and accessories, but fully monitor me under NHS. The continuous carbohydrate readings from the unit, that are sent to pump is only available if fully paid for by the patient, but they again will train/monitor you. I can't afford that and just do around 8-10 blood test a day. The only serious problem for me is I hate the pump I'm using and the feeble alarm that you cannot hear if anything goes wrong, or you miss a Bolus etc. You should be able to choose, but unfortunately no such joy. Some areas in the Country don't supply or let patients have pumps due to poor funding which is worse than my situation. -Parts of Yorkshire/Scarborough etc. (Unless now altered, but didn't move there because of this.)
That doesn't sound right to me @Johndotcom - if the clinic have judged that a pump is the best treatment for you then they should be funding everything you need to use it - the continuous monitors are very rarely funded as they aren't essential but your cannulas etc are.
You're also right about being given a choice of pumps.
Take a look at the INPUT website http://www.inputdiabetes.org.uk/ they have advice on getting what you're entitled to..
I am a service user rep for my local NHS diabetes service. As such, I have worked with the diabetes service provider to agree policy on pump use and what is being offered.
As our service has already been outsourced to a private company, they were allocated a budget by the CCG to run the pump service. Based on this they had a number of decisions they had to make to provide the service in that budget:
1 how often to replace pumps - most pumps have a 4 year warranty, but trying to get the manufacturers to state whether they are safe to use after 4 years is nearly impossible. On that basis they took the decision to replace all pumps after 4 years.
2 the next decision was whether to major on a particular pump. They undertook a costing exercise based on the 4 year cycle. On this basis, the Accucheck insight pump is most cost effective. They do not say this is the only pump they will provide, but if a patient desires another pump, they need to put forward a clinical case, e.g. The omnipod is better for people working in a hazardous job (e.g. prison officer) as there is no tubing that could be grabbed.
3 CGMS is not norm, it is only provided in certain conditions and needs, e.g. Pregnant women with unstable blood glucose
4 the decision on whether a patient gets the pump is according to NICE guidelines. It always means an assessment on whether the patient could use the pump.
What I have become aware of as a pump user when attending user groups, group training and other events is the pump is not for everyone. Many people struggle to understand that using a pump is not a cure and requires a lot of hard work to achieve a good outcome. This does mean that going onto a pump needs good clinical support and agreement it's the right solution. I am aware that some pump users in our area have tried a pump holiday and decided it's the best decision they have made.
These points don't seem to include diabetes education, do they?
The single thing that is necessary to ensure that a pump user is able to use it to improve clinical outcomes AND quality of life is proper training.
Apart from not mentioning education for adults as a condition of having a pump, you don't mention kids. Currently, pumps are given to children, apparently willy nilly. As the child gets older and takes over their own management, they are NOT given DAFNE courses, etc. It is assumed a) that their parents actually did know how to manage their child's diabetes, and b) that the parents are capable of imparting that knowledge effectively to a teenager. I'd put money on both of those assumptions being false 80% of the time. Hence, pump use statistics get skewed by young users (teens and adults) who have been failed by a huge gap in NHS diabetes education programs. And a myth that pumps 'don't produce improvements.' And a bunch of youngsters who don't know what they don't know and so cannot even ask for help. I know. I was like that once. My parents were excellent when it came to convincing doctors about how well they cared for me. But they didn't. The problem is that people also convince their kids that 'that's how it is.' The kids despair and withdraw.
If you are in the user group, you could raise this issue of training for youngsters. Of course, a tiny minority of parents do it really well (they're probably all members here). But too many don't.
thanks for the information. please tell me if I can purchase Animas Vibe online?
Is it the best pump among all?
Omar, you cannot purchase a pump in the UK (And I think the rest of Europe) without a medical approval. It's therefore not possible to buy new on-line.
Thanks Tim. But I live in Saudi Arabia and the price here is almost double the price in UK. That's why I want to buy it online. Also I got some training on how to use it. There are some representatives and educators from Jhonson company who gave me training.
I hope I can buy it in a reasonable price.
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OK I will repeat to you exactly what Tim has told you. You can not buy a pump on line. They are prescription items only and any pump you want you need a prescription for even if a private purchase and you will have to buy it from the country you live and get your supplies this way as well. Do you understand this now?
As much as I know a pump would benefit me. I'd never in a million years qualify:
-No hospital admissions for hypoglycaemia,
I still suffer the same highs and lows as every other type 1 diabetic, pay my NI, etc.
Pretty unfair that there's not a part funding option available. Would be better for those who are interested in further improving BGL but have the condition fairly well managed as to not meet the NICE eligibility criteria.
Grant, have you checked the Input website? NICE are not the only guidelines. There's also the ABCD stuff on which far more people qualify. There's more here: http://www.inputdiabetes.org.uk/alt-insulin-pumps/is-it-provided-by-the-nhs/
ABCD recommends that insulin pump therapy is also considered in the following situations:
• Acute painful neuropathy or symptomatic autonomic neuropathy if
conventional treatment fails to enable adequate blood glucose control
• Hypoglycaemia unawareness
• Extreme insulin sensitivity
• Needle phobia
• Severe insulin resistance with poor blood glucose control
(especially if type 2)
• Specific quality of life issues:
– Pathological fear of hypoglycaemia
– Marked glycaemic excursions/dawn phenomenon
– Excessive number of injections for optimised control
– Impaired exercise capacity, abnormal eating behaviour or an unacceptable number of sick days
– Shift work or frequent travel across time zones
– In children: sub-optimal school performance, exclusion from aspects of a full school life; behavioural problems (for example, mealtimes); adverse impact on family dynamics
Mine was obtained on the grounds of marked glycaemic excursions/dawn phenomenon, with Glycaemic Variabilty stated as the cause, along with excessive number of injections.
If you don't ask you don't get, I have all the qualifications you have for a pump and have been pumping for quite a few years now.
As @CarbsRok says. The first and foremost qualification for getting a pump is the fight you put in.