The NHS asking for interest from Providers to deliver a Consultant led service in Norfolk and Suffolk


Yesterday, Suffolk Commissioning issued a 'Prior Information Notice' on behalf of the 7 CCG's who commission (or buy) the ME and CFS Service from Provider(s).

The CCGs are interested in transforming this into a consultant led model consistent with the current international consensus evidence base for ME and CFS.
The aim of the service will be to improve outcomes (particularly for those with severe ME), increase ongoing support and provide a more holistic multi-disciplinary team approach to care. The total annual budget for the community element is anticipated to be in the region of 500,000 GBP.
This Prior Information Notice does not guarantee anything, but rather it is 'dipping a toe in the water' to see if there are any Providers willing to deliver the service for the funding available.  

The Prior Information Notice will run for a month.

Meeting of the Joint Health Overview and Scrutiny Committee (HOSC) 4 April 2017


The role of the Joint HOSC is to hold local services to account.  A briefing for the Joint HOSC was provided by the NHS for the meeting in January 2017. 

The Joint HOSC have reviewed representations made by the NHS in response to the complaints that have been made by the Patient / Carer Group.  

We have repeatedly complained about the serious shortcomings in care and the failure to deliver on promises for improvement accepted by the NHS and made on the recommendation of the Joint HOSC in 2009.

Meeting of NHS Commissioners on 13th March 2017


Commissioners from all of the 7 CCG's who commission the Norfolk and Suffolk ME and CFS Service are meeting on 13th March.  They will be discussing the way forward following last years feasibility study for service change.  This is a very important meeting for our local service.

This post will be updated when we know the outcome of the meeting. 

Update
Commissioners have assured us that they remain committed to delivering a biomedical consultant led service in Norfolk and Suffolk.  Options are being explored to achieve this within the finances available. 

Another local MP Interested in our Service Development


The MP for Gt Yarmouth, Brandon Lewis has recently agreed to contact the Gt Yarmouth & Waveney CCG (also known as Health East) to raise our concerns regarding Service Development.

Local MP Jo Churchill contacts MP's in Gt Yarmouth & Waveney regarding Service Development


The 7 CCG's which commission the Norfolk and Suffolk ME and CFS Service will be meeting shortly.  They will be discussing the way forward in response to the feasibility study for service change which was undertaken in the autumn of 2016.  This study concluded that cost neutral service development can be delivered which addresses long standing inequalities of care, especially for those severely affected by ME and CFS.  The post, 'Hanging in the Balance' explains in more detail.

In the meantime members of our group have been contacting our local MP's to ask for their support for this unprecedented opportunity to deliver the care that patients have repeatedly told us they want.

Most recently, the MP for Bury St Edmunds, Jo Churchill has kindly agreed to contact Brandon Lewis MP (Gt Yarmouth) and Peter Aldous MP (Waveney) on our behalf.  Both Brandon Lewis MP and Peter Aldous MP have also recently been alerted by constituents of our group to the risks of further delay in delivering on promises made by the NHS to local patients in 2010. It is the hope of our group that the combined interest by local MP's can make a difference.

The service development process is at a critical and time sensitive stage after many years of work both by Commissioners and our group.  If you live in Norfolk or Suffolk, and are well enough, a letter or email to your MP in support of service development would be very welcome.






 

Meeting of the Joint Health Overview and Scrutiny Committee (HOSC) 20 January 2017


You may recall that the service development process began in January 2010 following recommendations of the Joint HOSC, which the NHS accepted. 

Documentation from the Joint HOSC from 2009 can be found here
And from the NHS in 2009 and 2010 here and here.  Norfolk LINk made a submission to the CQC which also informed the process, the document can be found here 

Regular updates have been provided to the Joint HOSC by the NHS since 2010.  The most recent NHS briefing for the Joint HOSC can be found here.

At this meeting there were presentations from the Patient / Carer Group and Gt Yarmouth & Waveney CCG.  Audio recordings were taken at the time and I will upload the transcripts shortly.



Meeting with NHS Commissioners 15 December 2016


A meeting has been arranged for 15 December.  

A report has been written reviewing the options for developing the ME & CFS service within the finances available.  The recommendations of this report is to be discussed between the Patient / Carer Group and Commissioners.

Update 


The meeting was held between Suffolk & Gt Yarmouth & Waveney Commissioning and representatives from the Patient / Carer Group.

A final report has now been released following the feasibility study funded by 6 of the 7 CCG's who commission the service.  The feasibility study concluded that cost neutral service change could be delivered to address the significant and longstanding inequalities of care, especially relating to the severely affected.  

If implemented the service change would form the foundation for developing a biomedical service which is more in line with that delivered to people with other neurological conditions such as MS, and also with links to ME research projects.

The feasibility study is now being reviewed by the 7 CCG's and the Provider and a decision will be made in early January 2017.

The Patient / Carer Group fully endorse the recommendations of the final report. 

Further update 28 January 2017


Negotiations are ongoing between the seven CCG's and the Provider.  We will update you as soon as we know more.