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CCG Position in Relation to Freestyle Libre Glugose Monitoring 2018

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StuartB

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I have copied NHS Coastal West Sussex CCG response to Freestyle Libre Glugose Monitoring:-

“We understand that there is a lot of interest in the availability of the FreeStyle® Libre glucose monitoring system on the NHS in Coastal West Sussex.

Diabetes specialists across the area have looked into its potential use in detail, exploring the clinical evidence, its accuracy, NICE guidance around its use, and how it can work alongside and/or replace other means of glucose monitoring that are currently available.

As a result, the Coastal Area Prescribing Committee has agreed that the CCG will routinely fund the FreeStyle® Libre sensors on NHS prescription in Coastal West Sussex in line with the Regional Medicines Optimisation Committee North’s recommendations.

Therefore FreeStyle® Libre will be available for people with Type 1 diabetes who attend specialist Type 1 care and meet clinical eligibility criteria, such as using multiple daily injections or insulin pump therapy.

It has also been agreed that the system must be initiated by a patient’s consultant led specialist diabetes service; it cannot be started by GPs or specialist diabetes community nurses, although they can support its ongoing use.

Dr Steven Pike, Medicines Management Clinical Lead at NHS Coastal West Sussex CCG said: “We are pleased to confirm that FreeStyle® Libre will be available on the NHS for certain groups of patients with Type 1 diabetes in line with regional recommendations.

“We recognise there may be some question from patients about its availability, and whilst it is correct that the system has been approved by the NHS Business Services Authority to be included on the Drug Tariff from 01 November 2017, this does not mean that it can be automatically prescribed from that date.

“As with all drugs and devices it must go through local decision making processes, and we have worked with colleagues from Western Sussex Hospitals NHS Foundation NHS Trust and Sussex Community NHS Foundation Trust to look at the clinical evidence and benefits of this system.

“Freestyle Libre® is an innovative new device that has the potential to improve quality of life for patients and support self-management. However, at the current time there are significant limitations to the data available from clinical trials that make it difficult to make it available more widely on the NHS”.

Whilst encouraging there are two main issues:

1. Initiated by Consultant led specialist Diabetes Service...not GP or Specialist Community Nurse....given that there has been a major push to take care of diabetes into GPsurgeries..that leaves a lot of us buggered. I was encouraged by my Local GP to move diabetes care to them, instead of Hospital based Diabetes Centre, especially as Retinopathy Screening would not be funded at Ipswich Hospital where I had been going for over 30 years
2. Meet clinical eligibility criteria.....yet West Sussex CCG do not specify exactly what it is apart from attending specialist Type 1 care (and what is that?), multiple daily injections. What about if you have had more than one instance of needing medical assistance for a hypo, or you are prone to night time hypos, where you don’t wake up, and your partner finds it difficult to both take a blood sugar reading or administer glucose treatment to someone whose neurological system is scrambled......or of course we can call 999, and hope the person at the end of the phone realises how serious the situation could be.

I will stop there, as I could go on.

Thoughts on the position are appreciated
 
Hello @StuartB

Welcome to the forum!

Really encouraging news that Freestyle Libre is being made available in your area! It can be a very valuable tool, and personally I think it is only right that certain criteria are placed on its use so that the funds spent on it are properly used.

Regarding point 1, as far as I am aware, there are valid concerns over new patients being given Libre with no support, and being left to flounder. I’ve seen many many people on FB support group who have found it difficult to interpret data from Libre, have been confused by perceived accuracy anomalies (without understanding the inherent differences between sensor and fingerstick) it have felt overwhelmed by the new flow of data and/or who have jumped into overreacting to the slightest upward bump on their graphs. For this to be supplied by NHS, naturally it is important that people using the devices are properly supported, and not all GPs (very few?) have experience in optimising T1 treatment through continuous data.

I know that when self-funding, people have just had to ‘get on with it’ and muddle through on their own, but it’s quite different when Libre is being supplied free by NHS IMO.

Cynically I always suspected that the pull exerted on T1s to take their care away from specialist centres into GP surgeries was partly down to QoF points and the extra cash GPs can get for ticks in boxes - we T1s are expensive to keep. As far as I know retinal screening is now handled nationally, in my area there is a team which migrates around GP surgeries, but it’s not the surgeries themselves that undertake the screening.

For point 2, clinical criteria are likely to be similar to those for CGM (though Libre lacks alarms). So hypo unawareness and loss of warning signs despite a person’s best efforts are more than likely on the cards. Though Anyone with repeated call outs as you describe really would benefit from full CGM with alarms.

If you are battling with frequent Severe Hypoglycaemia you really should tell your team about it and get some better support. Until this month repeated nocturnal SH would have prevented you from holding a driving license.

There is currently a study recruiting which is hoping to substantially reduce SH in people called HARPDoc - if you are anywhere close to London, Sheffield or Bournemouth, it could travel to them (they may even pay for the travel) it would be well worth you considering it.

https://www.harpdoc.org/
 
Still, criteria for being considered for Flash GM monitor very vague. I spoke to GP specialist Diabetic nurse, who said she didn’t know specifics, would have to refer me to Specialist Consultant, which I have never seen as Gps have taken treatment in house. Call from GP specialising in diabetes care to discuss eligibility. Long conversation....not helpful, but referred to Chichester Hospital, no guarantees. Call today from reception at GP surgery saying am over using test strips! If I have I to test before Meals and drive car, that puts me at a minimum of 6 tests per day, given I want to know what blood sugars are after meals, that adds at least e additional tests. Not happy about decisions being made on behalf of diabetics by people who don’t understand the reality of living with the condition
 
My local ccg has published the criteria for getting a Libre on prescription (text copied from their .pdf):

FreeStyle Libre® should only be used for people with type 1 diabetes, aged four and above, attending specialist diabetes type 1 care using multiple daily injections or insulin pump therapy, who have been assessed by the specialist clinician and deemed to meet one or more of the following criteria:
1. Patients who undertake intensive monitoring 8 or more times daily.
2. Those who meet the current NICE criteria for insulin pump therapy [HbA1c >8.5% (69.4mmol/mol) or disabling hypoglycemia as described in NICE TA151] where a successful trial of FreeStyle Libre® may avoid the need for pump therapy.
3. Those who have recently developed impaired awareness of hypoglycaemia. It is noted that for persistent hypoglycaemia unawareness, NICE recommend continuous glucose monitoring with alarms and FreeStyle Libre® does currently not have that function.
4. Frequent admissions (more than 2 per year) with DKA or hypoglycaemia.
5. Those who require third parties to carry out monitoring and where conventional blood testing is not possible.

In addition:
 All patients (or carers) must attend training (arranged by the specialist service) in the use of Freestyle Libre® System
 Commit to ongoing regular follow-up and monitoring (including remote follow-up where this is offered)
 Adjunct blood testing strips should be prescribed according to locally agreed best value guidelines with an expectation that demand/frequency of supply will be reduced
 
All about saving money - to avoid having us paying for a pump and reduce our outlay on test strips.

Not to ease our anxiety nor help us in any other way.
 
@StuartB - Great that you've shared your local areas position on Flash, its brilliant to hear that your area will be providing it on their local tariff. In regards to meeting criteria, there will likely be general criteria guidelines - like the ones mentioned above, but these are guidelines, and so we'd always encourage individuals to make a case for their own clinical need (see our Flash Support Pack). If you are experiencing frequent severe hypos, that may well be a strong criteria for being in need of the technology. The fact that it can be prescribed in your area is a great advantage and a step towards you potentially getting the technology on prescription. Best of luck.

We're still gathering data on local policies across the UK, so if you haven't contacted our Policy Team already at policy@diabetes.org.uk , they would be delighted to hear the situation in your CCG: https://forum.diabetes.org.uk/board...reestyle-libre-glugose-monitoring-2018.71074/
 
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