Advice for T1D parent moving to the UK

[vicbaldry]

Hello - I'm a father of a type 1 diabetic. My daughter was diagnosed just over 2 years ago and she's currently 4 years old. We're currently living in the US, but I'm considering a job opportunity in the UK. I wanted to get some information from this group regarding some practical implications of moving. Thank you in advance for your help and advice.

Pumps: my daughter is currently using the Omnipod pump which we love. Is this pump available in the UK, and is it covered by NHS or private health insurance? Are there other pumps that are covered that people are using? Is insulin free on the NHS?

CGM: my daughter uses a Dexcom G5 Mobile sensor and we swear by it. I don't think we could manage her levels nearly as well without it. Is it available in the UK, and is it covered by NHS or private health insurance? Are there any viable alternatives that are covered?

Finger checks: We use a finger stick checker that is provided for free, but the test strips can be expensive. Is this covered by the NHS or private health insurance?

School: we live in New Jersey where the public school system assigns a nurse to our daughter to help manage her diabetes while she is at school. The nurse checks her finger before meal times, looks at CGM readings and administers insulin. This is a bit more involved than our daughter simply going to the nurses' office a few times a day. The nurse is fully focused on just our daughter, which helps keep her levels optimal. Is this something that is provided in the UK by the government? What is the general school situation like?

If I'm forgetting anything, are there any additional costs associated with managing T1D that are not covered by insurance in the UK?

 

[grovesy]

Welcome.
I am sorry I am not able to answer your questions, I am sure someone will be able to.

 

[stephknits]

Pumps, omnipod is available in the UK on the NHS, but all areas are different and offer different pumps, so it really depends where you are moving. You could argue that you are used to omnipod etc if that pump isn't normally offered in that area.
In my area they offer Medtronic, Abbott, omnipod, animas. But some areas only offer one type. All diabetes products associated with the pump use including strips and insulin are available on the NHS. Some people do have issues getting enough strips sometimes (but usually type 2).

CGMs are NOT offered on NHS unless exceptional circumstances. I'm afraid I don't know anything about private insurance, so have no idea if you could get this covered (I've not heard of anyone doing this). The dexcom is available to buy in the UK. Thee are no other alternatives covered. At the moment, although I think some CCG s (clinical commissioning groups who fund local area NHS) are considering funding the freestyle libre.
School. Type 1 parents will know more than me, but I doubt you would get that level of support in UK schools. The local diabetes centre in the hospital will help train a teaching assistant / relevant staff, bug you would not be assigned as one to one support.

Good luck with your decision, do ask if any more questions

 

[Sally71]

No you would not get a dedicated nurse in school in this country, in fact you would not even get a dedicated teaching assistant unless your daughter has Special Educational Needs, and diabetes alone doesn't qualify for this. At my daughter's school there are currently 3 diabetic children, all with pumps: my daughter of course, aged nearly 11, with Roche Combo and separate Libre sensor; another aged 7 with Roche Combo; and another aged 4 or 5 (first year at school) with Medtronic pump and integrated CGM sensors. My daughter is now old enough to manage all the day to day stuff herself, although she still has a detailed care plan which covers everything which she has to do, how to deal with hypos etc etc so that all teaching staff are well aware of everything and can help her in an emergency. For the other two, and also my daughter when she was younger, everything is managed by the class teacher and teaching assistants. The law is that schools must provide someone who is willing to be trained up to do whatever is necessary to help your child with their medical condition, this does not have to be the teacher, it can be support staff. DSNs (specialist diabetes nurses based at hospital) are usually pretty good at going in and doing the training and helping you to make care plans and so on.

 

[trophywench]

Does this apply to you?

https://www.gov.uk/healthcare-immigration-application

I didn't think you could just move here and automatically get everything UK nationals get - and it turns out I'm correct. If you do have to pay, according to the website I've posted the Link to, you would still be responsible for the prescription charges that we are. Diabetic = free, not suffering from any of the listed conditions which exempt us, or a child under a certain age, or over 60 years of age - then it costs us for every item on each prescription. It's a standard charge notwithstanding what the item actually costs. If you have to pay for prescriptions, most pharmacists will tell you upfront if the item is available 'over the counter' and the price is cheaper than the prescription charge, so you shouldn't have to pay more than you actually need to for prescriptions. You can't get eg a whole year's worth of anything prescribed - legally, 3 months supply is the most a GP can prescribe at any one time.

Don't come here without a couple of months supply of everything your daughter needs. You need to register with a GP - but this can take a while because each member of your family that you wish to register needs to be seen by the Practice Nurse to go through medical history etc. They usually take BP and sort out any further tests that may need to be done depending on each person's health. They actually get a 'capitation' fee from the NHS for everyone on their panel of patients - but get more for anyone with a chronic condition. However - in order to claim the extra dosh there are a whole list of things which they need to carry out on an ongoing basis, in order to get the 'extra'. Then you will need to see a GP, so your daughter can be referred to the nearest Paediatric Diabetes Clinic at a reasonably local hospital - so you wait again for an appointment there, to get all the Pump funding sorted out. Children are dealt with at Paediatric Clinics until they are - I think it's 19 - but the last year + of that is gradually handing them over to the Adult service. It is not the GP surgery directly that deals with the funding - it's a local to you, organisation called a Clinical Commissioning Group (CCG) They have to agree the funding and set it up, so will tell the hospital when it's done, and they will tell you. Only then can you start ordering pump supplies from the pump company in the UK, who send supplies to you but their bills to the CCG, who settle them.

I don't see that you will have any major problems - it's simply that you have to plod through these things in order to get where/what you need - and the NHS is honestly great - but Speedy Gonzalez, it never is (except in a genuine emergency - and we hope we'll never have one of those!)

Although not changing anything, my pump funding took ages to come through because of a slight complication with where I live - 100 yds outside the border of a CCG. We used to live inside the border, so when we moved, especially considering I was already seeing the Diabetic Clinic within that border and we were all used to each other etc and all quite happy, our GP said it wasn't necessary to go to the palaver of re-registering in the new area. Great ! Trouble was - despite being told properly by the hospital that the old CCG would still be footing the bills - the pump company ignored them and kept sending them to the CCG that applies to our actual postal address. So that CCG kept sending em back and saying 'not one of ours' - which was true! Roche were excellent at keeping me supplied throughout all this, but must have taken 6 months in the finish to stop being told by the Order Line 'Oh hang on - there's a 'hold' on your account - what's going on here?' LOL Great relief once they finally all got their acts together. Not a mega problem at all - just a minor frustration - and an example of how hitches can occur and how long it can take to sort them out !

Getting your own heads round the system is probably the thing you'll have most trouble with !

 

[Redkite]

Omnipod is available here and becoming more widely used. It can be funded on the NHS or paid for privately, but in both cases you'd need a consultant endocrinologist to prescribe it. You'd need to register your family with your local General Practice doctor, who would refer your daughter to a paediatric endocrinologist.

CGM is difficult to obtain funding for, but not impossible. There are people using G5 here but most are self funded.

BG testing strips are provided on the NHS (subject to you paying a fixed fee as a non-UK citizen). They would be prohibitively expensive to buy privately, and private health insurance here does not cover pre-existing health conditions.

Schools - the Equality Act 2010 requires schools to make reasonable adjustments for disabled children (type 1 is classed as a disability for the purposes of this law, i.e. it is a "long term impairment"), and to ensure they are included in all aspects of school life. In practice, some schools are better than others at providing suitable support. At the age of 4, your daughter needs 1:1 care for her diabetes in school - some schools have the resources to provide this, but if not it is advisable to ask the Local Authority (County Council) for an assessment of your daughter's needs for an EHCP (Education and Health Care Plan). This used to be known as a Statement of Special Educational Need, and guarantees the child a fixed number of hours of support in school each week. Many type 1 children are refused an EHCP initially, because type 1 is not seen as an educational need, however it has been successfully argued by many families that without adequate diabetes care/support, the child would be unable to access their education at all, and therefore the number of children with EHCPs is growing.

 

[TheClockworkDodo]

Just to add - with something like type 1 diabetes, especially in a child, you are likely to find that the NHS will make a big effort to sort things out for you as quickly as possible - although, as Jenny says, you do have to go through the process, which would normally take some time, I certainly found when I moved to a different area and had to register with a new GP, that they fast-tracked me to be sure I would be able to get things like insulin and test strips as soon as I needed them. And as people have said, once you've paid the initial fee for non-UK citizens to access NHS care, the basics your daughter needs to survive, like insulin and test strips, are all free.