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This needs an across charity rebuttal- all LTC like Parkinson's MS etc Letters to MPs with cc to local Chairs of CCGS, Joint Strategic Commissioning Committees and Local Community Health Engagement and Partnership organisations being told this is bad. This is a RCPsy power grab with Government...

Suggestion, a strong rebuttal letter?template is developed for individuals to send to their MPs, with CC into Heads, chairs of local of CCGs and any "Joint Strategic Commissioning Committees and local Community (Health) Partnership organisations? This is clearly a power grab on the part of...

Wonder if a certain neurologist (AC) who attended the January NICE meeting had a hand in this. If so, thank you! He managed a very good question right at the outset about "evidence" and grading of the available evidence. The question was not adequately answered by Sir Mark Baker......

Exactly, which is the point I have been making, in that the RCP are the powerhouse and instigator of most of the problems it would appear with constitution of the GDG....."The NGC is a multi-disciplinary health services research team funded by NICE to produce evidence-based clinical practice...

Fair enough. I know my thoughts do wonder a tad.... but seeing NICE "reaching out" and courting big pharma etc at a conference next year to me seemed self evident. I cannot see that they will encourage good robust guidelines in the public interest if they are also are following another agenda...

I am seeing a bigger picture to the NICE replies. The Government want to limit practical help, treatment and physical management of chronic conditions as it is "too expensive", despite may chronic conditions receiving very little like ME. They are shifting responsibility to the third sector and...

I just think it indicates NICE direction of travel.

Look what Tilly just found.....http://www.niceconference.org.uk/agenda?fbclid=IwAR3Pc-oUDB_AaQm8QogeTA9pIuZDR5TwOtJrBzd6WCaWyKujEfwL8_7mJlI NICE Please find the agenda for the conference below. Speaker details will be updated throughout the run up to the conference. Our programme has been...

This could be useful to submit to Independent Medicines and Medical Devices Safety Review if they look at treatments as well as medicines and devices- after all, it is a "procedure"? Suggestion, explore the Independent Medicines and Medical Devices Safety Review body? They could initiate a...

I agree that it's not the case in all but a significant subset may exist, especially those with allergies. The problem is mainly with the NHS Synathen test for these patients is a blunt instrument, and which fails to record subtle irregularities...

That's because anything over 25 mg is contraindicated. 20 to 30 mg every morning at about 8 AM, and 5 mg ( 25-35mg) every day at about 2 PM, for 12 weeks is not "low dose" really.

I have pitched in and asked EG some questions!

[PDF] Template for notes - Royal College of Nursing https://www.rcn.org.uk/-/media/royal...of.../children.../ukccypn-9th-feb-2016.pdf 9 Feb 2016 - Wendy Nicholson, Public Health England. Theresa ... Denise Evans, Chair of the Neonatal Nurses Association ... Anne Wilson, Action for Sick Children...

Succeeding with ME - Tymes trust "If the child doesn’t fit the theory then the theory is wrong" The late Dr Alan Franklin Consultant Paediatrician ME/CFS specialist https://www.tymestrust.org/pdfs/succeedingwithme.pdf

https://www.england.nhs.uk/wp-content/uploads/2017/08/multiple-sclerosis-mgt-for-children-sept-2017.pdf Interesting read...

https://www.mstrust.org.uk/a-z/childhood-ms Fewer than one in every 100 people with multiple sclerosis (MS) will experience symptoms before the age of 10 but between two and five in every 100 people experience their first symptoms before the age of 18. Not all of them will have been diagnosed at...

This is interesting from the MS Guidance Document; Table 1 NHS Outcomes Framework 2015–16 Domain Overarching indicators and improvement areas 2 Enhancing quality of life for people with long‑term conditions Overarching indicator 2 Health‑related quality of life for people with...

From my dealings with the MS Society a couple of years ago , I did not find them very forthcoming at all. I wanted national/local data on MS, prevalence, numbers and extent and range of services offered (as against ME) for our inequality/equity argument MS-ME with the CCGs who hold the purse...

Our local Norfolk and Suffolk Serive (ECCH) has 1600 patients ( they say currently which includes 200 referrals). They triage and diagnose approximately 1000 patients a year. It is accepted we have between 6000 and 8000 patients in Norfolk and Suffolk with a diagnosis, which includes children...

No we are. My husbands allergic conditions all disappeared when he was put on very low dose HC, (10 mg initially, now 2.5 mg per day)