Can ME/CFS patients in the UK choose who they go to see on the NHS?

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Sasha

Fine, thank you
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If you want a thread split, you need to contact one of the moderators. You could send Kina a private message or you could click "report" on your own post and contact the moderators via the message box that appears.
 
MeSci

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,235
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Cornwall, UK
Sasha said:
If you want a thread split, you need to contact one of the moderators. You could send Kina a private message or you could click "report" on your own post and contact the moderators via the message box that appears.
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@Leopardtail said 3 days ago that it was going to be done, so I presume that someone has requested it.
 
C

cosmo

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64
I was referred to a CFS specialist through a rhummy appointment. I had no say, he contacted them and I went.

I have to say I was really disappointed in them. I can't really say on here the full details, but some of what the Dr said didn't even make sense regarding science as to why I was ill or in pain, even I with a small GCSE level of science knew that what they said was implausible.

For treatment I was offered very high does of prozac and amitriptyline together. No two ways about it.
If I were still ill it was because I was doing something wrong and not following what I was told to do.

Then I told my GP I didn't/couldn't take the medication for a few reasons, also my pharmacist refused point blank to give the two together saying they can be fatal.
They only wanted to give them from then on, so I feel I don't have a safe place where I can go to get treatment.

I just feel at a loss really.
 
G

golden

Senior Member
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1,831
@cosmo,

thanks for relaying your story.

Collective Medical Insanity. Its not easy to work with!

I was trying to get a G.P. outside my cachment area, more fruitless emails. And then start on the road to applying for benefits as I am very financially vulnerable and dont know how much longer I can go on like this.

Just cant get the help I need.

But its taken me straight into a mess. Your post reminds me perhaps its something I should not be contemplating.
 
MeSci

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,235
Location
Cornwall, UK
cosmo said:
For treatment I was offered very high does of prozac and amitriptyline together. No two ways about it.
If I were still ill it was because I was doing something wrong and not following what I was told to do.

Then I told my GP I didn't/couldn't take the medication for a few reasons, also my pharmacist refused point blank to give the two together saying they can be fatal.
They only wanted to give them from then on, so I feel I don't have a safe place where I can go to get treatment.
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This page says:
Because fluoxetine's metabolism (like tricyclic antidepressants and other selective serotonin antidepressants) involves the hepatic cytochrome CYP2D6 isoenzyme system, concomitant therapy with drugs also metabolised by this enzyme system may lead to drug interactions. Concomitant therapy with drugs predominantly metabolised by this isoenzyme, and which have a narrow therapeutic index (such as flecainide, encainide, carbamazepine and tricyclic antidepressants), should be initiated at or adjusted to the low end of their dose range.
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So it implies that the two can be taken together, with cautions/caveats.

But personally I would not take either, let alone both together.

I did briefly take Prozac and nortriptylene together in 1996, but the Prozac caused increased agitation and insomnia, and I stopped them both, then suddenly felt alive again, before being overcome with a suicidal urge I had been fighting, and almost succeeding (but life events contributed to it too).
 
C

cosmo

Messages
64
golden said:
@cosmo,

thanks for relaying your story.

Collective Medical Insanity. Its not easy to work with!

I was trying to get a G.P. outside my cachment area, more fruitless emails. And then start on the road to applying for benefits as I am very financially vulnerable and dont know how much longer I can go on like this.

Just cant get the help I need.

But its taken me straight into a mess. Your post reminds me perhaps its something I should not be contemplating.
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I'm so sorry to hear you have been let down with care too.

It's such an uphill battle and then if you get help it could just be the wrong kind.

I hope you get your new GP as you hope. If you need benefits then ask for help, it doesn't have to be about what your Dr says although it can help, I don't think mine did anything to help my cause but I have been awarded some anyway as I cannot work at all for a few reasons to do with my health.
 
C

cosmo

Messages
64
golden said:
http://www.drugs.com/drug-interactions/elavil-with-prozac-168-74-1115-648.html

http://www.drugs.com/drug-interactions/elavil-with-prozac-168-74-1115-648.html?professional=1

The risks of interaction outweigh the 'benefits'.

Dangerous combo. Good on the pharmacist for refusing point blank to dish them out. More points to The Pharmacy Team.
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Yes he refused and said he would never, no matter who asked for it. He also said I would have a hard job finding anyone to give me the prescription too.

It was not small doses either, they were both large doses.

I also suffer from bowel and bladder problems which I did try to tell the Dr but it didn't seem to matter.

There's some awful outcomes from taking amy with bowel troubles that I have read and tbh it's something I just cannot take.
 
G

golden

Senior Member
Messages
1,831
cosmo said:
I'm so sorry to hear you have been let down with care too.

It's such an uphill battle and then if you get help it could just be the wrong kind.

I hope you get your new GP as you hope. If you need benefits then ask for help, it doesn't have to be about what your Dr says although it can help, I don't think mine did anything to help my cause but I have been awarded some anyway as I cannot work at all for a few reasons to do with my health.
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I have been profoundly disappointed by the medical profession. On many levels, in many ways.



I really ought to close and lock the door on the situation. But I am not financially independent yet and not well enough to even work part time.

I cant get through the benefits process alone as its my weak spot. I need a supportive, knowledgeable G.P.

One who tells me it is my right to get benefits and really encourages me. Although I did not know that you can be awarded benefits even with an unsupportive G.P. Good for YOU!! :)

Current G.P. gave me a fit/sick note stating M.E. whilst saying 'There is nothing wrong with you'. That psychologically scarred me. I also have to endure other forms of abuse at the surgery like being told to get a Charity job, loud voices shouting at me, the electric lights, being told by staff to have a one night stand to get pregnant (since i mentioned my illness has prevented my dream of having children), being denied correct testing, being told my blood pressure is normal, prescribed breathing exercises which gave me a severe relapse , caused unpresidented swelling in my head with visible lumps, a collapse, and all Doc did was get me an appointment for an MRI 8 weeks later at whichI I couldnt get to. I lost my ability to drive which has not yet returned.

Have beeng denied funding for acupuncture and other alternative therapies I think will help me, and whilst denying me tests that could at the very least help support my case claiming benefits, i am being harrassed every year to take Flu Vaccinations, and smear tests. Offered CBT!



Three months of benefits of £60 per week in over two decades of illness is all I have received.

Past G.Ps. not been any better. Have had about four in total . Had almost a decade with no G.P. . One was particularly abusive. and its difficult to get over. Sick of their politely violent ideas.


My closest G.P. to me is unable to speak very much English. Not only can I not understand him, I doubt he would understand me.

Coupled with neurological/cognitive problems, a hidden camera and you have the makings of a great comedy sketch.

So it is important to me to be able to choose a G.P. I think they ought to be obliged though to have websites about them and their interests and I would like to interview them before joining their surgery to get an idea of compatibility.
 
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MeSci

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,235
Location
Cornwall, UK
golden said:
So it is important to me to be able to choose a G.P. I think they ought to be obliged though to have websites about them and their interests and I would like to interview them before joining their surgery to get an idea of compatibility.
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Yes, but preferably not their sporting interests, as my previous GP surgery did! I don't need to know if they are married or have children (although I appreciate that this may be relevant to some patients), but definitely do not need or want to know that they are into music, yachting, etc! (I have just checked and they have removed that rubbish apart from the music reference. Now they just list their marital status and relevant medical/surgical interests/specialisms.)

I think that most practices do have websites now. Have you searched here? You can find info about their performance, patient ratings, etc.

It could be better, but it may be helpful.
 
G

golden

Senior Member
Messages
1,831
Thanks @MeSci thats very interesting. Its a basic system but I can see how it could be grown to really serve patients.

I have gleaned a few bits and bats from it I didnt know.

I was thinking of medical interests but I dont see why a website couldnt be more well rounded? Including hobbies, a photo, philosophy etc. I cant really see a problem with.

Just watched on T.V. BBC2 'Some Boffins with Jokes' - unfortunately SW appeared on it telling a joke including iced tea (i missed it as i couldnt keep up)... despite it being billed as 'some of the nation's sharpest scientific minds' (the joke was he appeared on it).

http://www.comedy.co.uk/guide/tv/some_people_with_jokes/episodes/1/3/

But yeah, they should stick their favourite jokes on their websites too.
 
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MeSci

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,235
Location
Cornwall, UK
golden said:
I was thinking of medical interests but I dont see why a website couldnt be more well rounded? Including hobbies, a photo, philosophy etc. I cant really see a problem with.
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I think it's an unnecessary distraction. It may pose a risk that you start chatting to the GP about shared interests instead of the list of medical issues you need to discuss, and appointments are drastically short.

I also felt as though I was having salt rubbed in a wound when I read about people enjoying yachting and other things for which I have no money or energy. It widened the gap between us and reminded me of how limited my life was.
 
Leopardtail

Leopardtail

Senior Member
Messages
1,151
Location
England
Sasha said:
@charles shepherd - when I attended a specialist NHS ME/CFS centre some years ago (which I won't name), I would say that my treatment was caring and tailored to my individual needs and nevertheless totally, utterly useless, apart from getting better sleep meds for my insomnia. What was on offer was (surprise!) GET, pacing, and CBT. To their credit, they agreed I didn't need CBT and didn't push GET when they realised I was too sick even to establish a stable activity baseline. They listened to me and didn't push things when I told them they weren't working. That's why I'm describing them as being caring and as tailoring their programme.

There was no medical treatment, and that's the crucial issue.

I'm aware that Prof Newton offers testing for OI and treats it, but is there actual medical treatment for our ME available at any of these centres that you're naming? Or anything else that Prof Newton offers?

I've had referrals to immunologists, infectious disease specialists, cardiologist and so on over the years and although they're all caring people and accepted that ME is a neuroimmune disease, they didn't have anything to offer: they just didn't know enough about ME.

We desperately need people who are experts in our condition - not just with a single-discipline perspective on it - and will provide actual medical testing and treatment. I've yet to find anyone in the NHS who will do that.
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Sasha,

I attended the Nuneaton clinic, and it did offer actual treatment for some of my issues. It had the major advantage of listening to what I was saying and offering actual treatment as opposed to what my GPs do - ignore all the symptoms and waste my time and energy.

It is bleak, but not quite as bad as it's being painted. The therapy side however is locally abysmal - we have an excellent clinic in York offering effective management strategies, however my CCG conveniently loses paperwork every time a referral is made.
 
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