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We want to hear from you: please tell us about your experience of the online community.

Access to health care and getting diagnosis for health conditions

worried33

Thought I would ask here on people experiences as well as any advice people may have in getting access to health care on the NHS.

My experience hasnt been great. For many years I didnt have much trouble accessing a GP, but it was always hard getting a referral to the hospital, and I discovered when being seen by a specialist they were extremely hesitant to provide any sort of diagnosis or treatment and seemed very motivated to just discharge.

On one occasion I got bounced back to a neurologist 3 times, it was the same person 3 times even though the referral asked for a second opinion, the first 2 times was from GP, and the 3rd one was initiated by my occupational therapist who was absolutely convinced there was neurological symptoms.

On another occasion I got admitted to hospital as my health was so bad, and was told my blood circulation to my legs was borderline life threatening, and even then the consultant discharged me within a day without much of an investigation other than observation. I was in such a bad state I was put on a carer plan and was told by the carers I was the only working age person under their care.

I get copies of the letters sent from consultants to my GP, and observed in the letter sent to me directly they would not reveal a diagnosis or play down problems, but then the letters sent to my GP would reveal a diagnosis and usually state the reason for lack of treatment was budget related and I dont meet the severity criteria to justify NHS treatment, sometimes the letters would recommend medication to manage the condition. When I asked GP about the contents of these letters and why I was not being correctly informed by the consultants, she explained they under a lot of pressure.

On the neurological side I later got multiple diagnosis from scans done for other reasons, completely missed by the specialist who seen me 3 times.

There is other stories to tell but these examples kind of paint my experience as a whole, very bad luck with consultants, and my support has mostly been GP and local social care.

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Comments

Daffodil94

Hi, my experience is similar. I got bounced around neurologists, neurosurgeons, nerve specialists and still don’t have a clear diagnosis. My problems started in 2019 when I had a fall. Fast forward to 2024 and I’m in a wheelchair. GP will refer me anywhere I ask and give me lots of help with pain but diagnoses are lacking and neurosurgeons don’t seem to like giving second opinions. (I think they must belong to some sort of secret society). I have had loads of what could be described as palliative care (although I’m not dying) but no consultant seems to want to sit me down and tell me what’s really wrong. I’m off in November for MRI of my right foot and left ankle. My suggestion. GPs are lovely but don’t supply a diagnosis either. I can remember the days when my GP knew what was wrong with you without blood tests and X-rays and I can’t remember anyone in my family needing a referral to a consultant. They were “family doctors” in those days and had lots of knowledge and wisdom at their fingertips. I do hope you get on well and find some answers. Keep plugging away. Complain to PALS about those consultants’ letters. Be persistent in your search for answers and don’t be afraid to tell your doctor what you need. The NHS is in a terrible state and I’m convinced it is budgetary considerations that are drastically affecting the health of people like us. I wish you the very best of luck. God bless

Elizabeth100

Oh you poor thing, this is absolutely awful…it also sounds a lot like my own situation. It took six years for my diagnosis to come through…because I was persistent with asking for assistance I was then called a 'frequent' visitor to the GP practice, and diagnosed with somatisation (making up symptoms that match a disease…the one I was eventually diagnosed with). Anyway, this is not about me, it is about you…I just want to let you know you are not alone.

Medical doctors are only as good as the person who trained them, and the younger ones are doing what they can in extremely stressful circumstances. However, you needed assistance and were pushed away. You will need to be persistent if you want help, or an explanation. If you want to, ask your GP surgery for a copy of all your medical notes (it might cost you money), and work through them.

Then perhaps write a letter to the surgery and the hospital consultant, outlining your problems with the help, or lack of help that you have received. Then you could let them know how they could rectify this situation e.g. by getting you that second opinion, or whatever you need.

I suppose you need to decide what you want…more medical help? An apology? An acknowledgement that they did not give you help when you desperately required it? Have a good think about what you want to do, and what you want to happen. It will take a long time to take an official complaint, so think about whether you want to do that, or could you use that time to do something better for yourself.

Take care, Elizabeth xx

paddy1

Sorry to say but your situation seems to be pretty common as is my situation ,i call it the contrived NHS merry go round , the only thing i can suggest is you keep plugging away at them untill they they get the message your not going away untill you get answers,but the truth is unless you are in the position to pay for private intervention after a certain age not much is going to happen. I have had to resort to paying for my surgery which will only partly do the trick as i also have undiagnosed issues which it apears there will be no recognistion of, sorry carnt be more helpfull ,but suffice to say your not the only one in this situation ,and i have to say since the pandemic the GP System has taken on the role of box ticking and is becoming nothing more than a blocking tactic

bubblehair

I am in London and have had real problems getting even a GP appointment after I had to move practices after my GP retired. I’ve moved practices again and the new one is better…I managed to get a telephone appointment. For a personal appointment none emergency it’s a 16 week wait! ImMy son is also disabled and Ive given up trying to get him help on the NHS, we are currently saving up for an assessment for him via a private doctor. I do sympathies and fully understand your concerns it’s like a loop in the twilight zone; going round in circles without a proper diagnosis or treatment plan.

Heath4099

I'm so sorry to hear of your poor treatment through the NHS.

I went through seven years of trying every treatment available to cure my chronic legs/feet and toes ulcers. I used to practically demand scans etc. I never knew pain like that existed and I went through some very dark times. I survived Sepsis 7 times and finally I got osteomyelitis in the bones of my feet and my toes. All the bones in my feet were broken and my toes fused together. All I heard was tight compression will help until one day last July I was once again admitted but the Sepsis was really bad. There was no blood reaching my feet

I met a new Consultant and he was amazing! I was diagnosed through a simple ultrasound with mixed Arterial and Vascular disease. Within 2 weeks of being on the ward I had to have both of my legs amputated above the knee. I ended up having a psych nurse due to the trauma but now I'm finally accepting what has happened to me but I do feel let down by my earlier treatment.

Don't allow yourself to decline, I wish I had been more demanding of scans etc.

Good luck with everything. 😊

veriterc

Lord Darzi said it all in his report. The NHS really is crumbling. So sadly, your experience is all too common. I built on my experience as an investigative journalist (plane crashes, coach crashes, etc) to use the internet to find out whom I should be seeing, and asked my GP for a referral to this specific person, or department. You have to take things into your own hands, and I found out this worked. The one time the consultant wasn't correct, he made the correct referral himself. I wrote about my methods on my blog www.aftercancers.com

amazingblazing628

Hi to all,

I just cannot belive what myself and a lot of you have gone through it's absolutely disgusting to say the least & I am having an op on friday hope it's going to improve my situation not make it worse.

I just don't understand why they get so many things wrong and their be no correction procedure because they should be & people that have been wronged as in all our cases should be entitled to compensation through the nhs they get paid to do a job wrongly & it's just not Right at all This is something I feel so Strongly About.

Amazingbazing628.

worried33

Thank you everyone, it seems I am not alone as you all say.

I have always been on and off with pushing as in the past it has led me to have very severe depression due to failing to get to a proper treatment path which made me back off and resort to managing life daily. Also like yourselves since covid it is far harder now to get access to a GP.

Daffodil94

I consider myself lucky to have my grandson living with me (since birth - my daughter is autistic) and I count my blessings each day. Our first priority is to look after and be kind to ourselves so we don’t go to those dark places we all know. Then, when we are strong, we can consider writing to Wes Streeting MP who is in charge of the NHS. There is strength in knowing we’re not alone, that there is a place we can share how we’re feeling. I don’t know how things work on this site as I’m a newbie but if we all offer to help each other with whatever skills and experience we have then perhaps we can make a difference. I, for one, love research so if I can help anyone with that, let me know. My best wishes to all those going through procedures, for a speedy recovery, and for those struggling to find the way forward, that a path will open for you.

erm

https://forum.scope.org.uk/discussion/124045/access-to-health-care-and-getting-diagnosis-for-health-conditions

Hi all with issues, a friend of my mums didn't get help, access to gps so paid around £40 to see a private gp who sent her to hospital seems as it was a private gp the hospital treated her better, but still been diagnosed with a rare stomach cancer they say she's on palliative care but said she could live for many years on treatment as removing half her stomach would mean a feeding tube into stomach so say it would be hard for an 84 year old to manage.

Daffodil94

and I expect she has peace of mind as she has a diagnosis. It’s understandable that she wouldn’t want to go through a big operation like that at her age and palliative care is the right thing for her. And all for £40. Makes you think doesn’t it.

angie610m

Even people diagnosed are having issues. I was diagnosed with hypermobility syndrome twice. I have fibromyalgia too. I had an op on my right knee in 2007. And broke same leg twice (same as knee op too). And I can't do normal physio or pain management but consultants don't understand this. And it would incur another break. Also the fact I have a call off my drs tomorrow as of blood test results which this has occurred 2 other times since July. And they're saying they're finding something in my blood connected to my joints. I've looked this up and online it's a high possibility I have Ehlers Danlos Syndrome. But not one Dr or specialist knows how to get me a diagnosis.

paddy1

Sorry to say the only way to get past the GP MERRY GO ROUND SYSTEM ,is to pay private to progress to a diagnosses and the required system ,not sure people understand that you can then be assesed to the NHS treatment ,its not the way things should be but when the devil drives we need to do what ever is required we only have one life to live

Daffodil94

Hi Angie 610, thanks for pointing out diagnosis isn’t the end of the road. Like you, my grandson has hyper mobility issues and is having to ask his consultant to X-ray his hips and legs! He’s had an MRI of his spine (although we’re suspicious this wasn’t a “full” MRI as he didn’t have to drink anything (which he was told he would have to))and unsurprisingly it didn’t show any abnormality. The point here is that he was told by his consultant that all hyper mobility clinics have now been shut down by the NHS. Does anyone know if this is true? He’s only 23 so it seems you can have difficulty getting a diagnosis at any age. I would add that his GP told him, at the time of referring him, that he had hyper mobility and to learn to drive as he wouldn’t be able to walk much longer. Poor chap came home devastated as he’s only just starting out in life. So diagnosis by a GP may not be a good thing.

Daffodil94

Hi Paddy 1, yes you are probably right but where does that leave those who can’t afford to pay? The NHS was set up for people to get free medical attention when they needed it, at the point of receiving it. I think all our politicians and bureaucrats in the NHS should hang their heads in shame. On a lighter note, as we need it!, perhaps we should all start keeping chickens. Wasn’t that how you paid the doctor in the old days if you were poor?

erm

My middle son keeps getting his pre op for a lump pressing on ribs stomach excruciating pain he has gout psoriasis obese cos of issues with digestive system bowels uses a breather cpap machine broken vertebrae in neck spine etc etc but waits years for to see someone get some treatment I said if he'd seen gp privately it might have been better.