Dr Nacul to provide care for moderate and severe patients in Suffolk

[Daisy]

For anyone interested in the background to the service development process you can find more information here:
http://nandsme.blogspot.com/p/the-story-so-far.html?m=1

The community service is currently led by an occupational therapist, with only GP involvement if there is a query over diagnosis. Domiciliary care is minimal and there is very little if any expertise to care for the severely affected. Lack of Clinical oversight is a considerable concern.

From a rational point of view the proposals in the feasibility assessment were a no-brainer.

But in some areas in the NHS there is considerable resistance to change for various reasons. There maybe empire building, historical financial arrangements which have not been scrutinised, prejudice against an illness such as M.E., lack of willingness to change despite research moving on, personal dislike of the individuals involved, lack of willingness to make organisational changes, cultural dismissiveness of the views of service users.... And I'm sure many more.

The Patient / Carer group can only guess why all the CCGs did not embrace the opportunity for change. Especially as the community service is delivering worsening outcomes year on year.

I do think that this maybe an illustration of how difficult it could be to dislodge some of the current services delivered on the BPS model.

 

[Milo]

My consultant tells my GP what to give me and my GP prescribes it. It may be something to do with funding and the prescription charges being responsibility of the GP?

This may work for addressing sleep, or upset stomach, or any issues that are easy fix for a family practitioner. However, this system will not work well for complex diseases requiring specialist care. (And I believe ours is in dire need of ammedical specialty which would notmonly see patients but would also look at the science and look into clinical research to improve treatments through clinical trials.

Is that the case in MS etc? I doubt it. If it is the system it's a stupid system but the NHS is pretty awful in illness management (rather than acute care) IMO

Much agreed. GP care sucks. They are not willing to learn, and simplly write prescriptions, do pap smears, and if you’re lucky, take your blood pressure. No one would expect their family doctors to assume care for a cancer or even for diabetes.

i wish GP’s understood that they are not in the capacity to provide full care for ME patients and advocate for a medical specialty to take over.

 

[Sbag]

Is that the case in MS etc? I doubt it. If it is the system it's a stupid system but the NHS is pretty awful in illness management (rather than acute care) IMO

I don't know and it was just my guess as to the reason why they do this sometimes.

 

[Suffolkres]

Maybe this has something to do with it....
Read it and weep.

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

This NHS Choices OVERVIEW MUST be challenged.

NHS CHOICES is suggestible by SMC and others. I think content can be altered - by authorised agencies like PALS ? - bit like Wikipedia?

I believe it to be administered by third party companies such as "Bazian." Bazian have links with SMC.........

 

[Jonathan Edwards]

Is that the case in MS etc? I doubt it. If it is the system it's a stupid system but the NHS is pretty awful in illness management (rather than acute care) IMO

Yes, for the last twenty years or so the policy has been for drugs to be recommended by the specialist and prescribed by the GP. It is standard for rheumatoid arthritis or MS. It does not apply to drugs actually given in a hospital unit or those where a hospital specialist nurse takes charge of teaching administration etc. but for everything else.

The system is not necessarily a good one but it is standard for all conditions.

I actually think there is something to be said for an ME physician not prescribing. There are no ME specific drugs to prescribe and it may be important not to have the distraction of being asked to prescribe all sorts of things that are not justified. The value of an ME physician is in advising, re-diagnosing where needed and providing knowledgeable support.

I also virtually never wrote benefit letters as a specialist. Again I see that as a distraction when there is only one physician to cover a whole county although the situation for ME may be more complex than for RA.

 

[Cinders66]

Yes, for the last twenty years or so the policy has been for drugs to be recommended by the specialist and prescribed by the GP. It is standard for rheumatoid arthritis or MS. It does not apply to drugs actually given in a hospital unit or those where a hospital specialist nurse takes charge of teaching administration etc. but for everything else.

The system is not necessarily a good one but it is standard for all conditions.

I actually think there is something to be said for an ME physician not prescribing. There are no ME specific drugs to prescribe and it may be important not to have the distraction of being asked to prescribe all sorts of things that are not justified. The value of an ME physician is in advising, re-diagnosing where needed and providing knowledgeable support.

I also virtually never wrote benefit letters as a specialist. Again I see that as a distraction when there is only one physician to cover a whole county although the situation for ME may be more complex than for RA.

Thanks for that info. Whilst nothing is licensed for MEwe can struggle to get appropriate pain sleep and so on meds from GPs. One GP refused to up my sleep med saying I needed to get more active instead, I'm on melatonin via a consultant which I know a lot of GPs won't use and a former consultant allowed me to try modafonil experimentally which a GP wouldn't so I think having a dr who can at least make recommendations is good.

 

[Cinders66]

It's about power and that ECCH are a Private limited company who answer to Company House NOT US!= NHS privitisation (Dpt of Communities & Local Government suggested Community Interest Companies- CIC.....)

Thanks for sharing all your in depth knowledge , whilst initially I was down I actually think on reflection it's pretty good news to have such a respected dr involved with NHS care.

 

[Cinders66]

Involved in the Service Development process were 7 CCGs, the Provider ECCH, and the Patient / Carer Group.

The NHS required that a cost neutral solution be found which Dr Nacul delivered in the feasibility assessment. Then the Provider discovered further costs not initially disclosed.

In addition there has been a historical aversion to service change in some but not all of the NHS parties involved.

On top of that there had been NHS reorganization and the service was divested from an acute setting to a community service not subject to the FOI. So lack of transparency in decision making.

We are very lucky that Dr Nacul expressed an interest in the first place and then maintained an interest while the NHS decided what to do (which took 18 months)

What is being delivered may not seem much but it is much better than nothing and Dr Nacul is genuinely committed to helping patients and to biomedical research. This could be a world class service. We have the foundation.

Yes you're right

 

[Sly Saint]

This is probably not the right place to put this but.......
I don't actually know anything about this care organisation but it was so 'nice' to see this list:
"What we do
We offer a variety of packages from 2 hours to 24 hours’ live-in care for people with:

• Acquired Brain Injury
• Trauma Brain Injury
• Spinal Injury
• Huntington’s Disease
• Multiple Sclerosis
• Motor Neurone Disease
• Myalgic Encephalomyelitis (ME)
• Parkinson’s Disease
• Cerebral palsy
• Epilepsy
• Other complex Neurological Conditions"

just thought it made a welcome change from ME s inclusion in lists of phobias, anxiety, depression etc etc

https://www.reed.co.uk/company-profile/yes-care-group-35876?jobId=35593660
https://www.yescare.co.uk/our-services/

 

[NelliePledge]

Thanks for that info. Whilst nothing is licensed for MEwe can struggle to get appropriate pain sleep and so on meds from GPs. One GP refused to up my sleep med saying I needed to get more active instead, I'm on melatonin via a consultant which I know a lot of GPs won't use and a former consultant allowed me to try modafonil experimentally which a GP wouldn't so I think having a dr who can at least make recommendations is good.

yes exactly this is why I get my melatonin via a friend over the counter from Walgreens in US as the GP said it could only be prescribed by a specialist and there isnt one in my area

 

[Suffolkres]

Dr Terry Mitchell used to prescribe Melatonin when he had a drugs budget! He recommended it when he lost his prescribing rights due to PCT mismanagement, squit and nonsense ! The clinical staff used to pass on info and recommendations. I don't know if they still do or are allowed to....I buy melatonin on cheaply on the internet from the US as it is classed as a food supplement not a prescription drug.

 

[Suffolkres]

Thanks for sharing all your in depth knowledge , whilst initially I was down I actually think on reflection it's pretty good news to have such a respected dr involved with NHS care.

We have accepted this to be an awareness and raising the profile exercise. It certainly departs from the New Service Spec which was signed off after years of intensive work in 2012!!. Dr Nacul's new service is nothing like the new spec, and even his consultant role PLUS the inadequate local ME service provider ECCH combined falls far short of that spec which I will upload soon. As it was not used, it cannot be "commercially sensitive" can it? In fact, we have not as yet been party to the new service arrangements but hope to have them explained very soon in August or September. Meanwhile, we will continue to use "pester power"... The NEW Spec is what we want and were told repeatedly we would have; "new words like "coproduction" etc have become common parlance, but we need action not words. We co produced for 12 years........ What we were offered only applies to Suffolk (2 CCG areas) so there is still much to fight for in Norfolk and Gt Yarmouth and Waveney (5 CCGS areas). Under the new alliances and "Transformation Plans", Suffolk are joined with NE Essex, so I am unsure if that qualifies Essex patients to apply to see Dr Nacul?