Medical gaslighting and problems accessing help through NHS

[Alecinthesun]

Hi there,

Are any of you experiencing medical gaslighting or experiencing difficulty in receiving basic treatment from the NHS? I would be very interested to know.

I was diagnosed with chronic pain state in 2011, fibromyalgia in 2013 and Ehlers-Danlos Syndrome last year. Back in 2011, the NHS was challenging but help existed. I received hydrotherapy and rehabilitation in hospital.

I was in a wheelchair and I could barely walk. The treatments on the NHS helped with developing leg and arm muscle strength and helped with my gait. Albeit, the best treatment was Neuro Impulse Protocol. It is a type of chiropractic treatment that worked well in treating muscle spasms caused by spinal cord trauma.

My challenges have evolved but getting basic help now seems almost impossible. I was wondering if anyone else is having problems and if anyone could give me some advice? I would be very grateful.

For example, sometimes, my pain flares and I need to use morphine. Just getting a prescription for morphine is now very difficult. I experienced medical gaslighting from my GP. I have changed my GP but I can't see the new GP until the end of March.

I have an appointment with an NHS physiotherapist on Monday. I know from my previous appointment, that her agenda is to discharge me from the Hospital service (she kept saying that she would not be able to help). I am suffering from terrible pelvic dislocations and pain which makes walking very painful. My hand and arm are numb and weak. Just recently I have been suffering from vertigo which makes walking difficult.

I know hydrotherapy would really help me, it has done in the past. The hospital service could offer this but it seems that they are more determined to discharge patients. When I was diagnosed with EDS last year, my consultant told me that I will need treatment for life, especially when things got worse.

It seems to me that the NHS is barely functioning? Recently, it has felt like the treatment that I have received from the NHS, has done more damage than good. At my last appointment, I wasn't given any physio exercises, the physiotherapist stared into my eyes and said that my pelvic pain will not go, I will have it for life. At the time, that damaged me a lot mentally. I question her opinion because the pain has felt better at times and deep down, I know I can heal from the dislocations. I just need to be able to access treatment.

It seems that the only way to overcome these obstacles is to go private. It will be difficult for me to fund private treatment but I believe that health is everything. Any advice would be welcomed. Has anyone else experienced similar? I would be interested in hearing your story.

Thanks for taking the time to read my long post xxx

[CM1EDSUK]

Hi,

I do know that many seem to find there's a delay in getting the help needed, from seeing a GP to getting appropriate further help.

As a long retired physio, I can't really comment on the Nerve Impulse Protocol, as Ehlers-Danlos Syndrome, which I also have, is a genetic disorder, & I have also experienced significent muscle spasm (but you mention spinal cord trauma, which is completely different; do you also have this?)

I am indeed sorry that you physio has not proved helpful; a physio conversant with hypermobility should be able to assist if you have the hypermobile type of EDS.

I agree with you that appropriate help would assist. Hydrotherapy can indeed be helpful, as can other rhythmical exercise such as walking whenever you can.

Altho with EDS I worsened by about the time I was 40, particularly because of generalised osteoarthrosis, I kept maintaining gentle evercise, which is my main stay. I was also worse 7 years ago, but have managed to maintain my mobility; if anything this is a tad better than it was.

I hope, if nothing else, when you see your new GP, they may give you an appropriate physio referral.

You mention vertigo, & I would ask your GP for this to be looked into. Many of us with EDS suffer from orthostatic hypotension, which may be the cause, tho there will be many others.

Have a look here at this GP's toolkit about EDS: gptoolkit.ehlers-danlos.org/ looking at the 'Emerging Major associations.'

With both EDS & fibromyalgia 'pacing' is more than helpful. For many of us that suffer chronic pain, it's also often a combination of things that work, & we're all different, so unfortunately it's a bit of 'trial & error' to find what things help the most.

[fibrogirl41]

bless you x I have often felt like I was battling to get help. I went to the paddock pool for hydrotherapy sessions but I had to pay for it as it is private, but worth it and they do physio as well if you can get to thurleigh area they serve beds bucks areas I think and they have a website so you can ask about the prices. I think they offer small group sessions or one to one. I hope you find something x ❤️ good luck x

[buddy99]

Being generous in my assessment, I would say that 8 of 10 times I have experienced at least one of the behaviours in the medical repertoire. Gaslighting is one. There is also humiliation, ridiculing, ignoring, aggression, instilling of fear and plain old arrogance. Compassion, respect and deep listening are rarely displayed. I have often wondered what is done to those who choose to become doctors. I'm sure the majority of them do not become doctors to become the doctors they become. I have often joked that there must be a course in med school on how to blow off patients. There is a book titled "Lucky Dog. How being a Veterinarian saved my life". It describes the journey of a veterinary oncologist in the Canadian system, who has thyroid cancer. The author, Dr. Sarah Boston, manages to take a very humorous approach to a serious matter. One time, for example, she is told that she sees cancer everywhere because she is an oncologist. If you want to have a laugh and nod along, because you have had a similar experience, I can highly recommend the book (if available in the U.K.). It will not help you with the systemic degradation of the medical system, but at least you can laugh about it. Other than that, I blame a medical system that treats people like things and puts the monetary factor above the human factor.

There! This did not help with the improvement of your situation at all. I wish you all the best, though. I really do.

[Jlg56]

I agree. I’ve given up with the nhs and just struggle on. The last time I saw an nhs physio she did the same to me and said I don’t know what you think I can do with you. I said I didn’t want to see her but it’s the only way to get the the pain consultant- she discharged me saying it was my pain!! I have morphine but because I have a cardiac condition. It took 2 months and many emails to actually get it from my gp. Do they honestly think we want it for any other reason than pain control? I was taken to A&E with severe chest pain 2 weeks ago. In the past I’ve been admitted for at least a week with that level of pain. Both nurses and drs said honestly go home and use your morphine. It’s hell in here! So I did. 2 weeks later, still in terrible pain. I despair!!

[LaurieLee]

Hi, what area do you live in?

[jhorsf]

The NHS is on its arse,being broken so it can be sold off to the millionaire mps mates to contract to.just my opinion of course.

[Lou1054]

I had physio by phone consultation, told me to keep moving.

[Elayne1963]

My GP won't do anything for my pain until I see the pain team but everything I have had a referral they have discharged me before even giving me an appointment I know that I am on morphine and other pain killers but it's only a quick fix and I am still in alot of pain even the oramorph I take when I need extra support does not stop the pain so I think I have been let down by the NHS on my pain

[Tjoceans]

That's a tick on that box here. The doc told my roommate he should deal with reality rather than meds. He's diabetic and he's been pretty depressed since his mom and sister died from COVID.

[SammyRome]

Hey everyone I'm so sorry that you all are suffering and not getting the treatment or support you deserve. But I can completely empathise with you all, I don't remember what's it like not being in pain. My GPs are useless too, trying to get an appointment just to discuss any pain relief is non existent. I've decided just like many of you, to struggle on!! The physio's won't touch me any more and basically said your like this for life, just learn to live with it. I found that heart breaking and soul destroying, so I'm left with the question what can I do?

[nettybetty]

ahhhhh how awful for you,j dont have any advice to give as i have no faith in NHS but can wish you well and hope you get some relief from all this x netty xx

[PorridgeoatsScotland]

Hi, over a number of years I have found my health deteriorating with constant pain and tiredness. A few years ago I was diagnosed with sleep apnea and was given a Cpap machine which helped with my snoring, (stopped it) however continued to be tired with brain fog and pain. Was referred to orthopaedics however X-ray did not show anything untoward. I was then referred to physiotherapy which did not help despite doing all the exercises given.

My GP then referred me to Neurologist but was advised that there was a waiting list of 90 weeks., after waiting for six weeks I phoned to see where I was on list and was told that waiting list had changed to110 weeks.

I decided to go private and was diagnosed with fibromyalgia and FND. At start of my journey.

[Midori]

Hi Alec, Welcome to the Fibrofighters' Den!

Unfortunately I can't even get an appointment with my GP! I moved here to Wales four and a half years ago! They seem to have lost most of the GPs as there were 20+ when I joined, just before the Covid lockdown. Now there are 6. and most of the work seems to be done by nurses.

Unfortunately it's the only Surgery in Town. If you can't ring right on 8am, you are basically out of luck. Fortunately my Fibro is more or less stable, although I cannot use the wheelchair due to the hilly territory. so I use a rollator. I'm going to investigate a mobility scooter soon.

At least in a bungalow, I don't have to climb stairs!

Cheers, Midori