Fellow ME/CFS sufferer from U.K here

[Empty]

Look up Access to Medical records, information for patients Beaumont Street. Can't copy and paste ATM.

I have scanned this, I think this is the link,

http://www.28beaumontstreet.co.uk/info.aspx?p=20

Good idea to always take someone with you to appointments (as well as recording).

Worth checking your own G.P. website to see how draconian they are (observing the imagery and language they use). In contrast, I was really happy with the feel and wording of the pushdoctors on medical records and in general I linked to earlier.

Not so happy with reading this website, wouldn't personally register with them, however I still can't really see any justification in witholding any records from cfs patients in it.

I think it is talking about witholding from violent, psychotic, mentally unstable patients, (not cfs patients) which there maybe justification for on the extreme end of the scale.

http://www.nhs.uk/chq/pages/1309.aspx?categoryid=68

Finally, I think its useful to have a purple booklet sent to the practice direct, anyone with ME is registered with (I think the MEA will do this for free).

 

[Rob Rainford]

Delay in accessing your notes may be caused through time needed to remove psychiatric comments which can be removed before the patient sees them 'in case they find them upsetting'.

Oh I'm fully aware they might be busy removing anything 'upsetting', or afraid anything the patient sees as defamatory may lead to legal action. I'll go with the second one.

 

[Rob Rainford]

"I also asked my GP if she could sign a document allowing me to try LDN privately. She refused stating she didn't know anything about the drug. So, I've hit a brick wall. Am I being fobbed off??? Seems that way to me."

I don't think so, on this point. I think it is reasonable and responsible if she doesn't know anything about the drug, to not prescribe it.

She could have pointed me to someone who did know about the drug, wouldn't you agree?
Anyway another place has asked to see my diagnosis before prescribing. No signature from GP required. (Desperate to try it)

 

[Rob Rainford]

In

I am afraid that it IS classed as a meantal illness by many in the NHS. I don't understand that last abbreviation.

Hence the reason I've been referred to a physiologist who uses the PACE guidelines. "I am NOT mentally ill, I am physically sick and need help" And that is what I keep telling them.......

 

[Empty]

She could have pointed me to someone who did know about the drug, wouldn't you agree?
Anyway another place has asked to see my diagnosis before prescribing. No signature from GP required. (Desperate to try it)

I don't know anything about this drug. But yes, she could have googled it or taken the time to study your research papers on it. She has to be confident to prescribe it and aware of complications and side effects. Time is severely restricted and I just don't know if its achievable or fair to ask NHS Doctors to do this.

It is a difficult one because as a whole, lots of patients have tried a lot of stuff, with a lot of outcomes, which also change. Desperation is also not the best combination to add to the mix but sometimes is the catalyst to success so who knows?

I am glad you have been able to source it though, so good luck

 

[Empty]

Hence the reason I've been referred to a physiologist who uses the PACE guidelines. "I am NOT mentally ill, I am physically sick and need help" And that is what I keep telling them.......

Have you seen the NHS constitution?

Also, you are fully entitled to turn down these types of referrals.

 

[Rob Rainford]

I don't know anything about this drug. But yes, she could have googled it or taken the time to study your research papers on it. She has to be confident to prescribe it and aware of complications and side effects. Time is severely restricted and I just don't know if its achievable or fair to ask NHS Doctors to do this.

It is a difficult one because as a whole, lots of patients have tried a lot of stuff, with a lot of outcomes, which also change. Desperation is also not the best combination to add to the mix but sometimes is the catalyst to success so who knows?

I am glad you have been able to source it though, so good luck

http://www.ldnresearchtrust.org/

http://drmyhill.co.uk/wiki/Low_dose_naltrexone

It's used to treat Autoimmune disease, MS and a host of other medical problems. Effective and cheap to administer.
She's a good GP and the only one in the practice who's actually sat up and taken notice. I'm not annoyed she didn't sign the form of consent and I accept her reason for not doing so, but her signature is the only way I could get the drug. Now I'll have to wait for my medical records at the end of the month.

Amongst all the other problems I don't sleep Empty, that's why I want to try LDN. I'm desperate

 

[Rob Rainford]

Have you seen the NHS constitution?

Also, you are fully entitled to turn down these types of referrals.

Yes thanks, I know it like the back of my hand. But I can smell the privatisation from where I'm sitting. (Lack of funding, chaos and the like)

I'm willing to try any treatment within reason of course. I can't see me continuing with this type of treatment as it's ineffective IMO, not to mention it's a 120 mile round trip.

 

[Empty]

http://www.ldnresearchtrust.org/

http://drmyhill.co.uk/wiki/Low_dose_naltrexone

It's used to treat Autoimmune disease, MS and a host of other medical problems. Effective and cheap to administer.
She's a good GP and the only one in the practice who's actually sat up and taken notice. I'm not annoyed she didn't sign the form of consent and I accept her reason for not doing so, but her signature is the only way I could get the drug. Now I'll have to wait for my medical records at the end of the month.

Amongst all the other problems I don't sleep Empty, that's why I want to try LDN. I'm desperate

Thanks for the links Rob, really interesting isn't it! Why would you need your notes for this prescription? Could you not bypass this by just getting a fit note
With your diagnosis on?

This link says to not use slow release and watch the fillers.

http://articles.mercola.com/sites/a...-actually-helps-your-body-to-heal-itself.aspx

There must be competent health practitioners in the uk ?
http://prescribe4me.co.uk/lowdosenaltrexone/Default.aspx
This one also needs a "comfort letter" or proof of diagnosis(cfs not mentioned though). But seems to have Dr advice ans support?

 

[Rob Rainford]

Thanks for the links Rob, really interesting isn't it! Why would you need your notes for this prescription? Could you not bypass this by just getting a fit note
With your diagnosis on?

This link says to not use slow release and watch the fillers.

http://articles.mercola.com/sites/a...-actually-helps-your-body-to-heal-itself.aspx

There must be competent health practitioners in the uk ?
http://prescribe4me.co.uk/lowdosenaltrexone/Default.aspx
This one also needs a "comfort letter" or proof of diagnosis(cfs not mentioned though). But seems to have Dr advice ans support?

You're very welcome Empty. And thank you too for the very informative links regarding LDN. All info is welcome

I think the form of consent to be signed by my GP before LDN is administered is to stop any form of legal action against the supplier should things go wrong. One supplier will only supply LDN with a form signed by my GP. LDN International only need a conformation that I have ME/CFS before supplying.

prescribe4me.co.uk is basically a link to Dixon's chemist in Glasgow. I signed up with them a few months ago, they are the one's who require the form of consent to be filled by my GP. I did tell them I had ME/CFS and they are willing to supply me with LDN.

IBS (or leaky gut perhaps) is part of my condition. It flared up 3 months ago and has only subsided now, waiting for it to come back again and give me another kick in the stomach. Apart from all the other issues I have, sleeplessness, fatigue and IBS are the 3 main reasons I want to try LDN. I recall reading an article a while back (Sorry, can't recall where) that LDN would cost the NHS under 80 pence per day. Why LDN isn't in their 21st century arsenal beggars belief.

Regarding the NHS AND PACE. cort posted this great article:

http://www.healthrising.org/forums/threads/how-alem-mathees-saved-chronic-fatigue-syndrome.5189/

 

[Empty]

Yes, I have been following the fraudulent PACE trial saga. Legally speaking, I think that the NHS CBT/GET advice should have been scrapped or at the very least put on hold by now whilst they look into it, given the harm that it has done. An urgent recall.

http://www.meassociation.org.uk/201...site-quick-survey-this-month-1-november-2016/

This is what an actual treatment centre will look like:

http://me-ireland.com/

 

[Empty]

I was also interested to see comments from the british red cross calling the current state of affairs in NHS hospitals "A humanitarian crises".

That precisely explains what has been happening for decades with the neglect and witholding research and treatments from the ME community - A humanitarian crises. And patients have died and committed suicide because of it.

 

[Rob Rainford]

Yes, I have been following the fraudulent PACE trial saga. Legally speaking, I think that the NHS CBT/GET advice should have been scrapped or at the very least put on hold by now whilst they look into it, given the harm that it has done. An urgent recall.

http://www.meassociation.org.uk/201...site-quick-survey-this-month-1-november-2016/

This is what an actual treatment centre will look like:

http://me-ireland.com/

Thanks for the links, greatly appreciated.

As I said in an earlier post 'I've hit a brick wall with my GP's' but I want to see what the senior GP has to say when I mention PACE again. I really had to grit my teeth the last time I saw him as his ignorance stood out. They hate it when you go in armed with real information, and that's what I do every visit.

Now I wish someone would suggest opening a treatment centre in Wales, no money for that of course.

 

[Rob Rainford]

I was also interested to see comments from the british red cross calling the current state of affairs in NHS hospitals "A humanitarian crises".

That precisely explains what has been happening for decades with the neglect and witholding research and treatments from the ME community - A humanitarian crises. And patients have died and committed suicide because of it.

Yes I hear it everyday on the radio, no money, beds are full, no real care for patients when they go home etc...
It seems like the destruction is inevitable.

I know the DWP do have guidelines when dealing with ME/CFS claimants. Stress being the main point during interviews, at least they acknowledge the issue unlike the NHS.

 

[Empty]

Thanks for the links, greatly appreciated.

As I said in an earlier post 'I've hit a brick wall with my GP's' but I want to see what the senior GP has to say when I mention PACE again. I really had to grit my teeth the last time I saw him as his ignorance stood out. They hate it when you go in armed with real information, and that's what I do every visit.

Now I wish someone would suggest opening a treatment centre in Wales, no money for that of course.

Yep, its a tough one. I don't think there is a particular format of getting through that brick wall. It sometimes happens because many patients, like yourself have patiently been chipping away with calm facts and then all of a sudden the wall falls down.

I think the era of having to play dumb patients to soothe Drs egos (yuk) is finally over though thank goodness.

 

[Empty]

Yes I hear it everyday on the radio, no money, beds are full, no real care for patients when they go home etc...
It seems like the destruction is inevitable.

I know the DWP do have guidelines when dealing with ME/CFS claimants. Stress being the main point during interviews, at least they acknowledge the issue unlike the NHS.

Which dwp guidelines are you referring to regarding stress?

thanks!

 

[Rob Rainford]

Yep, its a tough one. I don't think there is a particular format of getting through that brick wall. It sometimes happens because many patients, like yourself have patiently been chipping away with calm facts and then all of a sudden the wall falls down.

I think the era of having to play dumb patients to soothe Drs egos (yuk) is finally over though thank goodness.

I'll admit I only see one GP because of the lack of trust in the others I've seen in the past.
They just look on the computer, look confused, and usually offer some pills.

 

[Rob Rainford]

Which dwp guidelines are you referring to regarding stress?

thanks!

Bah, I read it somewhere regarding the assessment for ESA but didn't bookmark it. Sorry.
I'm almost certain it was on the ME Association revised Guide to Filling In the ESA Forms.
I'll see if I can trace it again and post a link.

 

[Empty]

I'll admit I only see one GP because of the lack of trust in the others I've seen in the past.
They just look on the computer, look confused, and usually offer some pills.

Yes. It is criminal.

 

[Empty]

Bah, I read it somewhere regarding the assessment for ESA but didn't bookmark it. Sorry.
I'm almost certain it was on the ME Association revised Guide to Filling In the ESA Forms.
I'll see if I can trace it again and post a link.

No worries, no need to search, just a wondering I had.

I hope the sleep settles into a more manageable pattern soon.