United Kingdom - Suffolk and North East Essex ME/CFS services

She behaved like that because she was caught out over governance...
She has been in post and I have had dealing with her directly and indirectly for 22 years.....

She's run ragged, asleep on the watch and has been 'misinformed' by her staff......
Thus due diligence has been absent!

 

I thought her 'opportunity to give a different level of clarity' line was great - straight out of W1A. John Morton, eat your heart out.

 

The service will cover the Suffolk and North East Essex locality.

two.2.4) Description of the procurementII.2.4) Description of the procurement
The NHS Suffolk and North East Essex Integrated Care Board are issuing Procurement Documentation in connection with the competitive procurement of the Suffolk and North East Essex Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and Long Covid Service.

The service is being commissioned to provide a specialist integrated health service which includes but is not limited to an activity management and pacing programme to patients who have ME&CFS and/or Long Covid and have been referred to the service in accordance with the referral criteria.

Key aims of the service are to provide early ME&CFS and/or Long Covid diagnosis for patients across SNEE ICS with a personalised care and support plan for ongoing management and signposting to appropriate services.

This Contract is being advertised with a potential duration of 3 years plus up to a 2-year extension. The Contract will be funded as a block contract with an anticipated total of £5,451,475.00 across the potential five years. The awarded Contract will be subject to the NHS standard inflation net of efficiency requirements, which will be applied to the Contract annually.

This notice is to inform providers of the release of documentation to initiate a competitive process to secure a Provider(s) to deliver this service.

In order to express an interest in this service and access the documentation, free of charge, please register on the In-tend portal via the following address and express an interest in the Suffolk and North East Essex Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and Long Covid Service under 'current tenders'.

https://in-tendhost.co.uk/snee-icb/aspx/Home

 

Pathway

 

This should be service specification now in public domaim

 

Managed to crack how to view all documents...

 

SNEE ICB progress update

We D and I, lead coproducers previously, in Task & Finish, were permitted back in process after November exclusion on 9th January 2025, a meeting which shed more heat than light...
I hour meeting which we were invited to just say our name and what we were grateful for today....!!????-
That 'icebreaker' took 25% of the meeting time.....more importantly, it revealed nothing of other SUs!


Procurement started on 28th January 2025, as I was speaking at the ICB Meeting in public.

The following day 29th Jan, I attended a Teams Service Users ICB and ICP Group meeting. It did not go well. All the promised revision and redrafting of areas of concern, evaporated as tender was live....

29th Jan
2 of the 8 invited participants with ME (both severely affected and made too unwell by the poor processes recently) were unable to participate.

That left 6 other,
plus 4 ICB and ICP officers-
Transformation lead and manager for LTC, LTC and Public Health & Intelligence manager, Coproduction Lead ICP and Procurement Lead.
It appears that 2 SUs were carers/ family members plus me,
the other 3 were Long Covid SUs.

Currently this interestingly is an 'engagement exercise'- started last November and from which we, D and I, were excluded from as of 19th November.

This November group has had no Terms of Reference, therefore no governance, and staff are adamant that the demographic of the group is not identified or recorded by them!!!!

No names were issued of attendees in subsequent 29th Jan meeting notes issued.

We have sussed the following;
1 carer and one LC SU are also involved of the 6, are directly linked as HC/provider Professionals with direct links with one of the bidders and existing hospital LC provider.

(No conflict of Interest has been issued, as no Terms of reference currently exist. )

The 'Wider group' going forward are also involving a high number of SUs who are or were former employees AHPS of the local NHS.
On 13th Feb, 2O25 D and I received an unsigned letter from ICB/ICP, that we were to be excluded from all and future SU engagement , procurement, evaluation and future service feedback...... regrettably, ....

I might post the actual letter later.. ..
Procurement ends on 11th March.

 

Maybe we have been done a favour
Time will tell....

 

Message to Ashley Dalton DoH Delivery Plan

Why reinvent the wheel when evidence has already been established?https://en.m.wikipedia.org/wiki/Standards_for_Better_Health

20 years on from the initiative, direct from the government, to role out ME services, following the 2002 Chief Medical Officer Sir Liam Donaldson Report on ME..... using our Norfolk and Suffolk Service as a model for National Role out... https://webarchive.nationalarchives...ions/PublicationsPolicyAndGuidance/DH_4086665

 

Look who is our Deputy CEO now.
Richard spent his weekend in October correcting the Spec with us....

 

We have a good relationship with Richard above.
I hope common sense will prevail.... I hope our unsigned abrupt dismissal letter.... was sent for a particular reason...
Politics? Probarty?.. is there such a word?

WHO knows!

 

A need for a backward Shift and look to the past.....
We have been very patient...