I see talk of people and teams experienced in the management of ME but surely, if they have been following the guidelines, they are only experienced in incorrectly managing and 'treating' ME. Where do these people with the correct experience come from? Obviously in the future we hope that they exist but currently?
A little backtracking and history here-
and a pointer that we need to interrogate and understand the processes which result in 'People and Teams' & NICE, if things are to work in our favour......
'NHS People and Teams'
(ie the remaining remnants of the
ME Services roll out in 2004)
- (some of which were steady pairs of hands, like Terry Mitchell's clinic in Norfolk& Suffolk and his regional steer in Cambs and Peterborough) -
have essentially been wiped out in the various PCT/CCG's / NICE directed service requirement 2008 - and 2010 shake down of NHS Services by this Tory Government and Landsley 'reforms'.
BACME. and it's insidiousness
Most of the services and staff were/are steered by
BACME.
Those remaining services exist in a parlous state, if at all.
Many services are delivered by
'Social Enterprise' arrangements who operate essentially like private medicine care services constrained and exempt from FOI etc making decisions behind closed doors......
GPs and GP Federations likewise.
We now have the perceived reversal of the 2010 Landsley 'reforms' - with the
Sustainability and Transformation programmes - and
Alliance arrangements which are responsible for contracting and commissioning services.
Very few patient led, patient endorsed service development arrangements/working groups exist, or if they do, they are likely to be are fobbed off or forced into a waiting game (look at Joan's M predicament in NI).
The journey in creating people and teams which can deliver what we want and need is fraught with hurdles and problems, NICE or no NICE!
The current flavour of the month
The current flavour of the month is 'covid services' and some £ dosh available and an imperative.
Likewise IAPT and FND and MUS....... apologies for acronyms.
NICE is guidance and CCGS and Alliances will take it or leave it... if they choose to ...... and many will.
Don't get me wrong- I think the challenge to NICE and the BSP was an imperative and necessary.
We have won the battle but the war is about to begin.
There are very few good clinical leads and precious few doctors will to put their heads above the parapet and chose ME and CFS in their carreer move.
Our Situation
Here in Suffolk the patients' working group is already thinking on it's feet about the need to exert it's influence on the situation currently and to use NICE to our advantage.
We are perhaps more fortunate than others in that we have some willing ears in the Commissioning and Contracts Teams at a senior level to influence the Board, Clinical Exec and the Alliance Strategy and Transformation work.
We have laid some foundations for a proper MDT and service hoping that NICE would be the icing on the cake and justify our stance.
So thank you to patients and other Guideline Committee members who have had to fight the fight on this.......
We will soon know whether all the planning has paid off or if we need to go back to the drawing board for our Service Model in the future.