So disappointed in the NHS

New diagnosis and before diagnosis
1

Hi there,

I am so utterly disillusioned with the NHS, it’s unbelievable. I have seen a number oif doctors and nurses over the past year and while some of them were nicer than others and some doctors more competent than others, I am sure most of them did whatever they could to help me. But I feel like there really wasn’t much they were permitted to do! I am so thoroughly convinced by the principle of the NHS to provide equal healthcare to all, no matter how much money they have that it took me ages to realize this!

I’ve been having symptoms since April at the latest (it is quite hard to tell in my case as I’ve not had clearly distinguishable episodes). In July, they finally did an MRI where they found lesions. I have been frequently misinformed about them: first, I was told there was just a lesion in my spinal chord, but not in my brain, as I read the MRI report, it said that ther was one lesion in my brain and one in my spinal chord, but I recently found out that there were several lesions. My symptoms kept getting worse, I could hardly walk anymore and was told that my first appointment ith a neurologist was still ten months away.

Luckily, I am originally a German citizen and could re-activate my German health insurance. After seeing a neurologist over here, I was admitted to hospital for a week where another MRI, LP, massive amounts of blood tests and even a gastrocopy were performed and I was put on a 5 day cortisone drip. My symptoms are still not entirely cleared up, but with physio and the proper meds I may get back to some state of normalcy. However, I feel like there is no way I can trust the NHS to provide the care I need. Thank God I have the enormous privilege to not have to rely on it and I hope that by taking myself out of this system, somebody else may profit from it. I’m not entirely sure what will happen in the future, but I’ve taken time off and will start treatment here until I can get over the fact that, if I had followed the NHS schedule on this, I could have ended up in a wheelchair. Furthermore, their complete over-prescription of ibuprofen against my chronic pain may have damaged my stomach lining to an extent where it caused a severe vitamin B12 deficiency, which might have made my symptoms worse (although I still need to wait for test results on this).

I am so disillusioned with the NHS at the moment, I’ll probably have to move somehere else in the UK to be closer to an airport… I know that I may still be in a state of shock and utterly alarmist, it’s probably just the remote part of Wales where I live where it is this bad, but this is so far from what the NHS is supposed to provide! I get the feeling that those ho are not privileged enough to go private really have no hope if they are sick!

I apologise for my over-privileged, probably naive rambligs, I’m really just in a state of shock and still surprised how easy it suddenly was once I got here.

I sincerely hope that my difficulties in getting help are an unfortunate exception!!!

2

Hi MJ

I’m sorry to hear about your difficulties with the NHS. There is a kernel of truth in some of what you say that some NHS services just aren’t up to scratch but let me reassure you all services aren’t like that. For one I work for the NHS and I can hand on heart say not just me but the team I work in, work very hard to give the best patient care - I think a big reason why is because we love our jobs though.

But I can sympathise with the obstacles you’ve faced after my own journey. I’ve had official symptoms for 2 years - saw an MS specialist as someone at my work recommended them and it was in the same trust so I thought less issues for time off with appointments. I was seen in one month (this is the standard anyhow in London) and then went on to have EMG/ bloods and full MRI brain and spine and was then seen with the results two-three months after my original review. My MRI finds showed non-specific lesions (so lesions but necessarily typical of where MS attacks). I was kept under review and told to contact if I developed moree severe symptoms - which I did. Frustratingly every time I went back to see the neuro (2 occasions after) he fobbed everything off and told me to get on with it - at one point he even threatened me by saying do you want to be catheterised when I had bladder issues. He did all the investigations but his patient manner was abismal.

I sought a second opinion from another trust which was difficult as I did feel slightly let down working for the NHS. I saw a general neuro who then referred me to an MS specialist (took me 3 months to see the general neuro and then one month to get a review with the MS specialist). At this point it was suggested I had possible MS but as MRi findings weren’t typical MS they couldn’t officially diagnose and wanted to do LP. I declined at this point as wouldn’t have been eligible for DMD’s and most of my symptoms had resolved - I’d never felt better. I went away with a 6month review feeling quiet satisfied that I had somewhere to turn should things get worse and a neuro that was competent. Unfortunately my nweuro then went off on sabbatical. So I ended up waiting a year for an appointment (this I only got after I complained). The new MS neuro I saw last week was excellent he feels this is MS and even said the fact that my lesions are in non-specfic areas doesn’t mean it’s not MS (he’s seen many patients like me go on to be MS). So plan now is to repeat MRI’s have EVP and LP with the view that if there is enough evidence I get put on DMD’s as I would now be eligible (had two episodes in last six months). He was fantastic and even asked what day of the week is best for me to come in and have all the tests on one day to work round my work.

So overall a mixed bag really. I’ve had some really good experiences (not much waiting times / prompt investigations etc) but some not so good experiences as well. I think as you said being in Wales the levl of service/care perhaps isn’t as good being in a remote area as they just don’t have the resources. Unfortunately neurology and MS in pparticular does feel like it’s an area that is overlooked because though it’s not a great condition to have we don’t die from from it so it doesn’t get the priority it deserves like cancer and heart and diabetes.

I don’t know if my story has made you feel like you want to continue with your plan of not being under the NHS or not but working for the NHS I have to have some faith that they will get to the bottom of what’s wrong with me (or at least try very hard) and I will get the care I need. Fingers crossed for the future.

Reemz

X

3

Thanks for this. I honestly believe that, just like any large organisation, the NHS is filled with mostly hard-working, well-meaning and competent people. Some may not be as nice or competent, but that is bound to happen in any system of such size. I seriously cannot blame any specific person, I feel let down by the system, not the individuals. But I am incredibly relieved to hear that my experience was just a particularly bad one. After all, I can take it and take advantage of other options.

Best, MJ

4

THANK GOD! My housemate in the UK just informed me that there is a letter from the NHS neurologist waiting for me at home, so it probably would have not turn out as bad as I feared for a moment! I am so relieved right now! I apologise if I scared anyone, there clearly is hope!

5

Hi

I’m sure what you’ve been through is awful. So, not to denigrate your experience at all, but merely to reassure others who may read this thread in future…

My experience has been the opposite. Absolutely lovely neuro who listened well, did the necessary tests (arranging them around my work committments), and speaking to me honestly and professionally about the findings. Waiting lists that were reasonable (for first appointment) and short (for MRI and other tests, and follow-up). Respect and good communication from everyone - phone bookers, secretaries, technicians nurses and doctors.

I’m sure a lot depends on where you live, and on luck, but it’s certainly not a bad picture everywhere.

good luck

6

Hi, well I feel I have been through the mill, after 15 years of on-going investigations!

I can tell you that not all, but some doctors in neurology have helped and others have certainly not helped me. I`ve been told I probably had PPMS, then told I did have PPMS, that changed to HSP for a year and was reverted back to PPMS, only to be definitely told it isnt any kind of MS afterall. My current diagosis is spastic paraparesis/cause unknown.

But whether or not we have faith in our NHS system, it is all we`ve got. Going private in the beginning didnt make the slightest difference to the outcome.

The one thing I am grateful to the NHS for, is that I have never been told its all in your head` like many members here. Nor have I ever been discharged.

Other NHS employees have done me a huge amount of good…OTs, Physios, district nurses, continence team, wheelchair services and others.

I guess my journey has been unusual to say the least, but the NHS is there when I need `em.

Hope you find good help wherever you go.

pollx

7

The NHS in North Wales is seriously struggling at the moment, much of which has been covered recently in national press. I have been told i will need to wait at least 18 weeks before getting an MRI. I telephoned a neurological hospital about 45 minutes drive over the North Wales border where the wait is 4-6 weeks! I am now being referred there instead. If i hadn’t found this out myself then nobody would have told me despite me begging for help. Apparently my MRI is classed as non urgent. Obviously being barely able to walk and being a single parent with a 7 year old and a 11 week old baby does not add weight to my case.

8

Oh no! I’m sorry, I haven’t logged on for a bit. birdlady, I hope you feel better. I thought the fact that barely being able to walk seems to count for very little was the most shocking part in my case, and in yours as well. I hope you can get help very quickly and have lots of people to help you out with the kids.

My GP told me she couldn’t refer me to a hospital across the English border (about 2 hours away), even though they also only had about 6-8 weeks waiting lists for a neurology appointment. I’m not sure if my GP was just inexperienced or what exactly happened there…

I seriously wish you and your kids all the very best!!!