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The CCG Project!

In order to find out the situation around the country for Libre prescribing now that the national policy has been published, I have made the decision to contact many of them to find out their plans.  I have arbitrarily chosen to contact all English CCGs that in December 2018 prescribed Libre via Primary Care to less than 5% of their population (and one specific request from a group member).  I had hoped this would be a small list, but there are 135 CCGs on the list.  I may have bitten off more than I can chew, but I'm committed to doing this and feeding back.  It worked before and hopefully this level of scrutiny will bring similar results.

Below is a screenshot of the base document I am sending to each of the CCGs - it has some fields that are merge fields, so don't worry about the brackets and codes in the document (I found a typo, which has now been corrected too)
The major piece of work with respect to this is finding the right person to contact.  However, I have some methods of finding the right person that have served me well in the past.  Below is a list of the 135 CCGs.  As they reply, I will hyperlink to the replies.  I am removing names from the replies as I don't think it fair to name individuals on a public blog.  If there are other areas that people would like me to contact, please let me know.  I am hoping to send 5-10 a day for the next week or so - it takes a while to find contacts and I occasionally have a life.  Wish me luck!

CCGs - replies complete (with date of final reply)


Airedale, Wharfedale and Craven CCG and Calderdale CCG (10 per month 12/04)
Ashford CCG 27/3
Barking & Dagenham CCG 13/3
Barnet CCG 28/3
Barnsley CCG 09/04 (rather a good reply)
Bassetlaw CCG 27/3
Bath and North East Somerset CCG 23/3 (via two letters)
Basildon and Brentwood CCG 18/3 (Policy published 09/04)
Bedfordshire CCG 19/3
Berkshire West CCG 03/04
Birmingham and Solihull CCG 15/3
Blackpool CCG 04/04
Bradford City CCG 28/3 (disappointing response)
Bradford Districts CCG 28/3
Brent CCG 04/04
Bromley CCG 22/3
Bristol, North Somerset & S Glos CCG 29/3 (new info added 29/03)
Buckinghamshire CCG 08/04
Cambridgeshire and Peterborough CCG 16/04
Camden CCG 01/04
Cannock Chase CCG 01/04
Canterbury and Coastal CCG 27/3
Castle Point and Rochford CCG 01/04
Central London (Westminster) CCG 19/3
City and Hackney CCG 04/04
Croydon CCG 10/04
Darlington CCG 22/3 (response via a group member 04/04 and FOI 05/04) (Update 16/04)
Dorset CCG 27/3
Dudley CCG 05/04
Durham Dales,Easington & Sedgefield CCG (Update 16/04)
Ealing CCG 04/04
East and North Hertfordshire CCG 26/3 (evasive!) (website link 16/04) Update 24/05, Update 30/05, still not prepared to change stance - still under review.
East Berkshire CCG 28/3
East Leicestershire and Rutland CCG 22/3 (The most comprehensive response so far!)
East Riding of Yorkshire CCG 25/3
East Staffordshire CCG 01/04
East Surrey CCG 05/04 (via PAD website)
Eastbourne, Hailsham and Seaford CCG 22/3 (as Hastings & Rother)
Enfield CCG 01/04 (update 16/04)
Fylde & Wyre CCG 04/04
Greater Huddersfield CCG 06/04
Guildford & Waveney CCG 06/04 (via Surrey PAD)
Hambleton, Richmondshire & Whitby 04/04
Hammersmith and Fulham CCG 04/04
Haringey CCG 01/04
Harrow CCG 22/3
Hartlepool and Stockton-on-Tees CCG 03/04 (Update 16/04)
Hastings & Rother CCG 22/3
Herefordshire CCG 04/04
Herts Valleys CCG 22/3 (Update 16/04 & 24/05 - still waiting!)
Hull CCG 25/3 (update 03/04)
Ipswich and East Suffolk CCG 14/3 (Prompted 01/04) (Acknowledged 02/04)(Update from group 17/04)
Leeds CCG 25/3
Luton CCG 24/3 (potential for more info if required - see post)
Merton CCG 02/04 (replied on 03/04 with a similar but not identical letter)
Mid Essex CCG 21/3 (Guidance published 09/04)
Milton Keynes CCG 28/3
Newcastle Gateshead CCG 16/04
North Cumbria CCG 16/04
North Durham CCG Update 16/04
North East Essex CCG 22/3 (interesting reply!) (PALs responded too)
North East Hampshire and Farnham CCG 29/3
North Kirklees CCG 06/04
North East Lincolnshire CCG 16/04
North Lincolnshire CCG 16/04
North Tyneside CCG 21/3 (update 16/04)
Northumberland CCG 21/3 (update 16/04)
Portsmouth CCG 22/3
Redditch & Bromsgrove CCG 03/04 and 04/04
Scarborough and Ryedale CCG 05/04
SE Staffs & Seisdon Peninsular CCG 29/3
South Kent Coast CCG 27/3
South Tees CCG 17/04
Southend CCG 01/04 (updated with policy 09/04)
South Worcestershire CCG 03/04 and 04/04
Sunderland CCG 27/3 (update 16/04)
Surrey Downs CCG 02/04 (also see Surrey Heath)
Surrey Heath CCG 05/04 (via PAD website)
Swale CCG 26/3 (via two letters)
Swindon CCG 28/3
Thanet CCG 27/3
Thurrock CCG 21/3 (updated with policy 09/04)
Vale of York CCG 03/04
Wakefield CCG 01/04
Walsall CCG 18/3 (Chased 02/04) Still no response, but understand prescribing effectively.
West Essex CCG 04/04
West London (K&C & QPP) CCG 04/04
West Suffolk CCG 14/3 (Prompted 01/04) (Acknowledged 02/04)(Update from group 17/04)
Wiltshire CCG 04/04 (FOI response on 11/04, but far more details are on website)
Wyre Forest CCG 03/04 and 04/04

CCGs - Awaiting further correspondence (with date of last correspondence)

Bexley CCG 26/3 (incorrect response received - trying again!)
Blackburn with Darwen CCG 19/3
Bolton CCG 18/3
Chorley and South Ribble CCG 20/3
Crawley CCG 19/3 (Likely to follow East Surrey policy)
Doncaster CCG 20/3
East Lancashire CCG 19/3
Greater Preston CCG 20/3
Great Yarmouth & Waveney CCG 05/04 (MP had response)
Greenwich CCG 20/3
Horsham and Mid Sussex CCG 21/3 (Likely to follow East Surrey policy)
Islington CCG 20/3 (FOI Acknowledged)
Kingston CCG 20/3
Lambeth CCG 20/3
Lewisham CCG 20/3
Medway CCG 14/3 (acknowledged)
Morecambe Bay CCG 19/3
Newham CCG 20/3
North Norfolk CCG 25/3
Redbridge CCG 20/3
Sheffield CCG 02/04 (just wow!)
Shropshire CCG 28/3
South Norfolk CCG 25/3
South Tyneside CCG 20/3
Southwark CCG 20/3
South Warwickshire CCG 20/3
Sutton CCG 20/3
Tower Hamlets CCG 20/3
Waltham Forest CCG 20/3
Wandsworth CCG 20/3
West Kent CCG 20/3
West Lancashire CCG 19/3
West Norfolk CCG 05/04 (MP had response)

CCGs - sent but no reply (with first contact date)

Dartford, Gravesham & Swanley CCG 20/3
Harrogate and Rural District CCG 21/3
Norwich CCG 22/3
Leicester City CCG 22/3
Sandwell and West Birmingham CCG 22/3
Telford & Wrekin CCG 22/3
Warwickshire North CCG 22/3
West Leicestershire CCG 22/3
Coventry and Rugby CCG 28/3 (had to resend)
Gloucestershire CCG 02/04 (request from someone in the area)

CCG List outstanding (alphabetical)

NONE!


Comments

Anonymous said…
Thanks for all your hard work Nick. It’s much appreciated by us T1s.
Anonymous said…
Hi Nick,
Thank you for your efforts with this. I live in Shropshire - but Shropshire and Telford & Wrekin CCG's generally link their decisions as they feed into the same APC. I have seen the draft policy and was asked to comment, which I have done, unfortunately, they haven't been great at feeding back the final draft or sharing the outcomes of their meeting which was held on the 20th March.
Fingers crossed we hear something next week.
Best wishes.
Unknown said…
Thank you for all this work Nick. It's very much appreciated. I'm watching BNSSG and saving my pharmacy bills for each Libre that my daughter uses after April 1st. I will send each one to BNSSG for reimbursement until they fund her. That will be a much more expensive way for them to fund a patient than through her GP. Let's hope they see the light quickly because as soon as April 1st arrives, Libre users are paying twice - once through taxation and once over the counter.
Anonymous said…
Thank you so much for all your efforts and hard work. I very much appreciate it.
Marcus said…
Hi Nick,
I've been working out how to push the (very evasive) East & North Herts CCG to publish how they are going to implement the NHS England guidance post 1 April 2019. To date they have only told me the following - which was sent in response to a complaint I placed on the East & North Herts CCG website:

"Thank you for your email dated xxx with regards to your enquiry about East and North Hertfordshire Clinical Commissioning Group’s (ENHCCG) prescribing policy for FreeStyle Libre.

The national funding arrangements for Freestyle Libre were issued by NHS England on 7th March (available athttps://www.england.nhs.uk/publication/flash-glucose-monitoring-national-arrangements-for-funding-of-relevant-diabetes-patients/ ).

ENHCCG are urgently reviewing and updating their current guidance in light of the national guidance. In line with accepted governance processes, for local prescribing decisions, revised guidance will require review and ratification by the Hertfordshire Medicines Management Committee and the respective Hertfordshire CCG Governing Bodies. We aim to complete this process as a priority, within the first quarter of 2019-20.

The guidance from NHS England describes the reimbursement available to CCGs for patients that meet the NHS England criteria. To clarify the NHS England guidance is not a mandate or a requirement, and the CCG will consider it closely with an aim to achieve the best outcomes for our patients. Considerations will include ensuring that appropriate arrangements for initiation, education and training, prescribing and review are discussed and agreed. It is acknowledged that the expectation of the NHS England guidance is that on-going prescribing for the selected groups of patients will be undertaken by GPs. Please use the following link to view the current guidance; https://www.enhertsccg.nhs.uk/endocrine-system. Updates regarding local guidance, will be published via this link."

The line that concerns me is the one that states "To clarify the NHS England guidance is not a mandate or requirement, and the CCG will consider it closely with an aim to achieve the best outcomes for our patients"

I looks to me like there is more of the battle still to come...
Nick said…
It's so frustrating. It really shouldn't be a battle. The policy is clear and its implementation has happened in many CCGs. I don't understand why they can't/won't speak to each other. As an example, I had a clear reply to my letter this morning from Buckinghamshire. http://www.t1tenor.com/2017/12/buckinghamshire.html There's no ambiguity, patients know exactly where they stand. The East of England CCGs are so frustrating....and I'm not sure why!

I drafted this response that could be adapted to other CCGs:

Freestyle Libre has been on general sale since October 2014. From October 2014 until the end of October 2017, the only method of procuring Libre was for a patient to self-fund the sensors at a personal cost of just under £100 a month). Following a NICE Medtech Innovation Briefing (https://www.nice.org.uk/advice/mib110/resources/freestyle-libre-for-glucose-monitoring-pdf-2285963268047557 …), FP10 prescribing was permitted from November 2017. At the same time that Libre was listed for FP10 prescribing, the Regional Medicines Optimisation Committee North (RMOC) published costed guidance for CCGs to follow to ensure that they prescribed appropriately and with minimal financial risk (http://bit.ly/RMOCLibre ). The majority of CCGs applied these criteria and have been prescribing Libre successfully and efficiently since that time. Unfortunately, CCG was not one of these CCGs.

Due to some CCGs not being willing to fund Libre effectively in accordance with guidelines, NHS England made the decision to remove the postcode lottery that was no present across England. A policy was developed that was based on the RMOC guidance to ensure that there was fair and equitable access across all areas. The method they have adopted is to produce a policy containing details of the criteria for prescribing Libre. An amount of money equal to the cost of prescribing Libre to 20% of registered type 1 diabetic patients has been removed from the CCG budget. This will be reimbursed in line with the percentage of patients that received the Libre in the 2019/2020 financial year. It is not a maximum figure, as there are savings likely with Libre usage, not just costs.

This reimbursement can only happen if the prescribing happens via FP10 prescription. NHSE haven't mandated how this is achieved - it is up to CCGs to decide. However, the majority have Amber listed Libre (or equivalent) which means that Libre prescribing is initiated and reviewed according to the policy in secondary care, with ongoing prescribing happening via primary care.

There is an alternative to this - if a GP is confident to prescribe, there is no reason for them to be stopped. GPs across the country, who understand the value of Libre, have been prescribing without secondary intervention since 2017. Somerset CCG initiates Libre prescribing without secondary care involvement at all.

As a further incentive, now that the DVLA have approved Libre results for driving, it is anticipated that the number of blood glucose test strips will decrease to around 0.5-1 strip per day. These savings can be realised immediately and can be significant.

Your CCG has just % of patients achieving an HbA1c less than 48 mmol/mol and % less than 58mmol/mol. There's plenty of room for improvement and Libre could help with this.
Anonymous said…
Thank you so much for taking the time to do this! I wasn't previously able to get one of these buy because of your hard work I am able to get one now and it will honestly make my life so much easier! All of us T1s are thankful and proud of such an amazing representative! Once again thanks Nick!
Alan said…
I've just discovered your blog so wanted to thank you for your support on this.
I have recently contacted Herts Valley CCG (Direct to the Chief Exec) and they have promised to provide a response to me by mid-July. I await with baited breath.

I'm happy to share my email to them (and then their reply) with you - what's the best way of doing this? Do you have an email address or form?

Keep it up!

Alan (T1D in Hertfordshire)
Nick said…
Hi Alan...I'm not sure I want to put address on here as spam robots may pick it up. Easiest way to get to me is either via Twitter at @cahmn or via the Facebook Libre groups that I help run. https://www.facebook.com/groups/ukusersfreestylelibre/ is the UK group.

I have updated the UK group with Herts Valleys news...but it's still taking a long time in that area.

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