Some very useful comments and observations here.
I would like to add a few more from our experience Suffolk with Dr Nacul.
http://nandsme.blogspot.com/p/the-story-so-far.html
In effect I would like to defend him regarding the Livestream.
Some of you will know the gist but it is useful to repeat some of it in this current
NHS and (NICE) context. (Mods sorry if this is off topic here?)
Despite our attempts like others, such as Hope4 NI have found, partnership workings hit up against the realities of the fragmentation of service provision, lack of transparency of decision making and of accountability. I am sure our experience is echoed around the country within support groups, many who have sadly closed down or given up.... But not Joan and NI who won't go away!!!!
DR Nacul's lecture, in my view, was as much of a reality check and not an attempt to raise false hopes amongst the ME and CFS community in respect of the statutory services for ME (UK NHS) or elsewhere ie Canada etc.
A little Suffolk personal background to DR Nacul's presentation;
Initially, When Luis responded to the advert issued in 2015 for a new service contract, (with a LOT of arm twisting and '
look here sunshine' moments from patient groups and Joint Health Overview and Scrutiny elected members) by the
'Service provider' East Coast Community Health, ECCH, for
'an expression of interest' for the post of a consultant lead for Norfolk & Suffolk specialist ME Service.
Dr Nacul and his LSHTM team,
bent over backwards to accommodate the vagaries of the Commissioning/contract/ and provider process (as well as the active hostility, feet dragging and downright hostilities to this way forward by the Norfolk and Waveney CCGS....and of course the reluctance of ECCH who kept changing the goalposts as well as moving the starting point....)
Let's remember the Provider is a
CIC Community Interest Company who are in effect answerable to no one in the public just to Companies House. So it's come down to the situation not just being about the money and costs, but also, in our view, a greater desire for ECCH to protect their business model, rather than serve their wider community.
(Suffolk get the short straw from them with 1 access outpatient point in Suffolk and 6 in Norfolk and Waveney!!!)
After a lot of background research and work, Waveney CCG (but not Norfolk and Suffolk) then turned round and said there to be a 'conflict of interest' in Luis applying finally for the job as he had done the
Public Health Feasibility Study ! It was a disgraceful way to treat any physician (who did the 2016 study, because he needed to show 'due diligence' regarding the consultant lead post), as they had changed the job and removed any monies to fund it after the advert was out!
And ECCH management did not wish to go this route anyway......
Then we had the
2017 NICE 'no we won't , yes we will' review saga.......!
http://nandsme.blogspot.com/2018/08/response-to-nice-draft-scoping-document.html
The committee only will allow practicing clinicians in effect at that time Luis was not providing any ME clinical services, so would not be eligible to apply as a practicing GP.
The we continued our local negotiations with Suffolk CCGs commissioning and contracts team who have been so supportive and helpful- a little light in a long and dark NHS/CCG Tunnel.....!
Finally persistence paid off and 'reluctance' i.e. cost pressures (on the part of the GP organisation in Suffolk ) was dealt with. Again down to Dr Nacul's generous accommodation of the situation.
Dr Nacul then starts the Suffolk Specialist service in 2018 and can apply for the NICE Guideline Group.
http://nandsme.blogspot.com/2018/07/dr-luis-nacul-internationally-respected.html
Finally what was written to NICE (by me with help from lots of others, on behalf of LocalME) becomes our new reality for ME and CFS Services.........
Our Severely affected member wrote,
"
It is a long document, but is worth reading, especially the general comments at the end which deliver perspective on service change from the experience of the work that has been going on in Norfolk and Suffolk for many years especially:
- NICE should not make things worse than they already are
- The needs children and young people are of considerable concern with 'pop up clinics' with no specialist oversight, parents accused of FII and the failure of health and social services to deliver appropriate, co-ordinated care
- The needs of the severely affected have also been neglected
- The lack of accountability for services for people with ME & CFS
- The importance of the patient experience
- How in Norfolk and Suffolk the aims of partnership working have hit up against the realities of the fragmentation of service provision, lack of transparency of decision making and of accountability"
