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Care in the UK

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Moddey

Moddey

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Parent of person with diabetes
Hello again, it's been a few years since my last message :D Ignore my signature and any blog links, they are very much out of date and I can't figure out how to change them (Northener, help!) EDIT: Changed, no worries 🙂

We are a family currently living in Finland, now (again) contemplating a move back. The destination is very much open as it is also contingent on the care issue.

As all the official hospital and clinic sites are absolutely useless, I was hoping you could give me some general information on the care in the UK. I know a lot depends on the area and the clinic but it would be good to hear some general principles.

My son is now almost 10, a pumper (Minimed) and uses CGM whenever we can get any sensors from the council. He doesn't notice his lows, let alone highs, nor is he rarely on the ball with his care in general. He is a bit of an absent-minded professor: intelligent and talented, but will forget to eat and dress.

A couple of questions:
Are all patients entitled to a pump? What about CGM?
Can you get help at school? (There has been a classroom assistant in my son's class who has been looking after him, too.)
Are there general standards that guarantee a certain level of care for all diabetics?

Thanks 🙂
 
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Hello there

I have been trying to formulate an answer to this since yesterday, was sort of hoping that someone with a few more years experience would come along first! But I'll do my best, here goes...

Pumps are NOT automatically given out in the UK, mainly because of cost. Mostly children and people who find their D really hard to control are prioritised, but it does very much depend where you are living and which hospital/clinic you attend. Round here one hospital is really clued up on pumps and the rest aren't, we are lucky and are at the pump-friendly one, if we'd ended up at one of the others we might never have got one. Even at our hospital I think people still have to wait anything up to a year to get a pump, because they have to do quite a lot of negotiation to get the funding. If your son already has a pump I think it's unlikely that they would take it off him and expect him to go back to MDI, but will you have to give your pump back when you leave Finland?

CGMs are even less funded than pumps, also because of cost, some very lucky people manage to get funding but not necessarily for enough sensors to keep them going all year round and I think most people have to self-fund. I am just thinking about starting to look into this myself, have managed quite well without so far but I would love all the extra information!

At school I think the only way your son could have a dedicated classroom assistant would be if he was fully SEN statemented, and diabetes alone does not qualify for that, he would also have to have learning difficulties or some other medical issue which made it hard for him to join in with normal classes. What we have done is that when daughter was first diagnosed, two DSNs came into the school to talk to the teacher and helped me to make out a care plan which the school must follow. This details everything from the daily routine to how to do a blood test, how to treat a hypo, warning signs of a hypo, etc etc and finishes with contact details for me, hubby and the DSNs (just in case they can't get hold of me, which is highly unlikely!). Each year the care plan is passed to the new teacher, I go in to check whether they are happy with it or have any questions and then we just leave them to get on with it, which is getting a lot easier now that daughter can do most things for herself, at first we had to rely entirely on school staff! It used to be entirely at the teacher's discretion whether they wanted to get involved with medical conditions, but the law has now changed and all schools now MUST provide a member of staff who is prepared to be trained up to do whatever is necessary, whether it be injections, other medicines, pushing pump buttons, hypo treatment etc. It doesn't have to be a teacher, could be support staff. We have always been lucky so far and all my daughter's teachers since diagnosis have taken everything on board really well, I hope that continues!

I think that just about covers it, hope it helps a little, good luck with your move! Whereabouts are you going to be living?

All the best 🙂
 
Thank you, Sally, that was extremely informative.
It all sounds very much like Finland as in we have found the care to vary massively between different areas. Pumps are quite common, especially on children, though there is usually a queueing time.
The CGM periods are livesavers for us, otherwise we have to measure an insane amount as there has never been any logic in the readings. That was another question I wanted to ask: are you entitled to an unlimited amount of test strips or is there a maximum number you can get in a year? This is one battle we have been fighting.
It all seems so frustrating as there are no two T1 cases that are alike. But the general care standards follow some sort of dream case and if you can't adhere to them, the fault is entirely yours. Or in this case, your child's. A few extra strips or CGM now would mean less major complications in the future and save money in the end, let alone the mental health of parents 😉

We haven't made up our mind about the final destination yet, it could be anything from Norwich to the Isle of Man :D Recommendations on good clinics are very welcome.
 
Well some areas do have a limit on the number of strips you can have on repeat. For instance in Coventry - it's 100. However - as long as your extra use of them is justified - and let's face it a T1 on MDI or a pump who also drives, needs more than 100 - and if he also takes any exercise that bumps it up again - they can easily override it and they do.

One of the GPs at our practice did query it one day - but he wished he hadn't after I'd given him chapter and verse on every time I needed to test in a week ! I doubt any other T1 has had trouble with him since LOL
 
We get 200 strips at a time which just about lasts us a month, but I don't think my doctor would argue if we needed more than that. When my daughter was dx the DSN wrote a letter to our GP indicating all her requirements and saying that strips must be provided on request, not less than 200 at a time. We also seem to be quite lucky with our GP, as yet she hasn't argued with anything we have asked for. They have changed our pen needles to the cheapy ones that many people on this forum don't like, but as we now only use pen needles once in a blue moon the stock that I've got (of the old more expensive ones) will probably last at least 20 years :D
 
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No they won't actually Sally - the expiry date on the box will tell you that after that date they don't guarantee them. Well yes, they will be ok for so long - but needles are lubricated and if the lube has dried up which it does eventually - they HURT !!

You can probably guess exactly how I know this can't you? LOL
 
Oh that's interesting TW - I thought the date was just to tell you the latest that they can guarantee that the needles remain sterile, I didn't know they were lubricated. Oh well maybe I'll donate most of them to my mum when they get close to the use by date then! As we use so few needles now I don't suppose we'll care much if they are not so good 🙄
 
They feel totally blunt when you try to get em in you when they've 'gone' - that's why they hurt.
 
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