ANY WAY to get proper medical treatment through the NHS in the Southwest of England?

Joanna

Member
Please feel free to move this post to another more appropriate forum heading if appropriate.

also, I have been asked by a forum member to make more paragraphs. I have done so, but unless I spend another hour or so restructuring my sentences, I will be making a paragraph break after every one. I hope there are enough breaks here now.

================================

I am in the UK.

I faithfully listed and described all my symptoms when I transferred to a new GP surgery about 2 years ago. This did no good. They just totally disregarded them as had the previous GP. My most serious symptoms were not addressed at all. I would bring them up and the GP would act as though she had not heard me.

They never answer the question except to say something occasionally like "Your tests all came back normal." or "I think this is due to an emotional problem" in the case of jerking and shaking when pushing through exhaustion as she advised me to do, or collapsing onto my kitchen floor when i was trying to get something to eat after having been up out of bed to walk a bit every hour in my flat.

At first, in the new surgery, I was treated by a caring but ineffective trainee doctor who I am sure from the way things played out, must have had to keep checking with her mentor, the senior doctor of the practice, for the first several months at my GP surgery. i was ignored completely and then assigned to another doctor when she left for a permanent job.

The trainee had seen me at home, but now I was not offered this service. After several calls to the surgery by my Socisl Services Case Manager, who said they were not helpful at all, the 'assigned' new doctor showed up at my house with no warning or appointment. Her stated areas of interest are OB/GYN, neither of which I remotely need AND MENTAL HEALTH. She was rather patronising, and did not stay long, answered none of my questions.

(I have had psychological testing and NHS counselling from a very good psychologist in the past. The psychologist I saw advised in a letter that he felt my depression and anxiety were not the cause of my illness, but the other way round.)

After her unscheduled visit to my home, the 'assigned' doctor wrote a letter asking me some questions. I replied after some weeks delibrating and working on my reply while very ill, I sent a long letter stating clearly and in an organised way once again what my symptoms are, the fact that they had not been addressed, or addressed adequately, saying what I felt I needed and what the priorities were.

At the end of the letter, i gave a number of links to the latest research studies, this website, and some other references, all from highly reputable sources.

She then replied in a letter to me that she had discussed this will all of the other partners in the surgery and they agreed that it might be better for me to look for another surgery practice.

I am now without a doctor and have no idea how to find one in my local area who will see me at home (I am mostly bed bound) and who treats patients with this illness in an appropriate way, believing the research and current findings, statements from IOM, etc.

I can't even get a proper diagnosis as the local NHS Hospital Rheumatolgy dept, the local CFS/ME clinic, and a private ME clinic are all run by the same Rheumatologist and his wife along with psychologists, etc. (She does the graded exercise programme and he does research on psychological factors which supposedly impact on the 'recovery' from this illness (CFS))

He states that he will not accept Fibromyalgia patients (my only diagnosis aside from Osteoporosis) into his treatment programme, as he claims they are at the opposite end of the spectrum (whatever that is supposed to mean) After doing research online, I learned all this and read the denigrating things he writes about Fibromyalgia patients. I cancelled my appointment for assessment from him.

My support worker who is no longer on my case as she was only for one year, did not seem to believe that I was suffering from a biomedical illness. She would not discuss it on that basis and after the letter from my doctor, gave me a lecture telling me I needed to go to the Rheumatologist and get a diagnosis.

She was evidently informed by the surgery of their letter to me and told something to the effect that I had not followed proper protocol by cancelling the diagnostic appointment with this same Rheumatologist, who has published articles and 'research' documents in which he states similar assertions to Wesselly's views about the illness, the fact that it is no longer a physical illness, but a result of wrong illness beliefs, deconditioning, etc.

I am desperate to find another GP, but there is no information provided about any of them beyond a few patient reviews on some GP surgery pages in the NHS Choices website. I have asked in some Facebook groups and on the ME Assoc website. The only reply I had there which gave any help for 'ME Friendly' doctors, was from members of the same clinic group that Rheumatologist runs.

Where can I turn now? Does anyone have ideas? I need several matters addressed.... chest pains, deterioration in general condition, fatigue and mobility over the last few years and especially the last 6 months, possible interstitial cystitis or other urinary problem, and orthostatic intolerance, as well as P.E.M. of course. These are my most severe symptoms, but I have some other questions about things that have not been addressed which could possible give some answers.

I rarely even contacted doctors over the past few years, as they were so dismissive. But I can't continue without having one at all, and I often feel I'd rather die than see anyone from this practice again after they' sort of invited me to leave.

My new carer company have been very helpful and they definitely believe I am ill and in need of appropriate care. They tried to set up an advocate to be assigned to me to help with this, but we were told that due to funding cuts, the advocacy service is now only to help with particular problems (I think meaning such as disputes and the like).

Any suggestions would be very gratefully appreciated.
 
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Who Me?

Well-Known Member
Hi. Thanks for the paragraphs. They don't have to make sense Grammatically, it's more about having blank space.

That said if you are in the UK you're kind of screwed. It is known there's really no one there. Many people go to Belgium to see Dr De Merlier.

I have a friend there who goes to Breakspear. Another option, although I don't know if she's seeing patients is Sara Myhill.

You seem to be doing a lot, reaching out to all sorts of groups. It just takes patience and time.

Wish I could be more positive. Oh what I didn't see is if you're able to pay to see someone on your own. That Might make a difference. And where are you specifically?
 

Who Me?

Well-Known Member
There's a facebook group myalgic encephamyolitis global that is based in Europe.

You might be able to get some info from there.
 

Issie

Well-Known Member
The tremor that you speak of and falling down on the floor - could be associated with POTS. You didn't say what your heart rate is with standing or if you are fainting and that's why you are on the floor. If you have POTS an electrocardiologist would be who could DX it with a tilt table test. Hoping for you to get some answers.

Issie
 

Joanna

Member
Thanks for the feedback. Yes, I am aware of the possible causes. I'm just so frustrated that I can't get any tests or treatment through the NHS.

Travel for me is out of the question. If I went to Breakspear I would have to be transported by medical transport in a wheelchair or lying down probably part of the way, as I couldn't sit up more than 45 min or so. They are quite a long way from me. I read they do take a FEW patients who cannot pay. I suppose I could look into this. Nevertheless, don't know how that would work out after initial testing and prescribed treatment plan, if I can't find a GP near me.

I'm awaiting a visit from someone who is in a new programme in my local area. Perhaps they can help me find a decent GP who will test me for heart problems, pulmonary problems, etc.

I also need the help of someone willing to learn about P.E.M. and orthostatic intolerance, in part to persuade the local council to fund an inflatable bath lift for me so I can continue to maintain independence to take a bath and wash my own hair more than once a week.

I just thought by chance someone might know of a NHS doctor who is 'under the radar' trying to be helpful. I know some are, but in my area, so far no clues.

Dr. Sarah Myhill is in Wales, and only treats private patients. I cannot afford to go there or have tests from her, which would in any case be worthless without a cooperative GP able to understand the results and go along with some form of treatment.

I live in the Southwest of the UK, but not near Wales.
 

Who Me?

Well-Known Member
All I can tell you is keep looking. You aren't the first and won't be the last person from the UK to struggle for help.

Post on all the other forums, scour Facebook. Be realistic about what you can expect, though.
 

Joanna

Member
Will do. Already posted in several places.

If wanting a doctor who believes I am seriously ill,
wants to know why,
believes it is not psychological,
and wants to do something to help
is unrealistic, then i am unrealistic. That's all I hope for. ;)
 

Who Me?

Well-Known Member
I'm not saying wanting help is unrealistic. What I'm saying is to keep your expectations realistic.

You can hope to find a doc who will help you get everything you want but that may not be the reality.

If finding a good doc in the UK (or anywhere for that matter) was easy, then the forums would not be littered with people looking for help.
 

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