This week, we want to better understand how you seek out healthcare services.
How does living with a chronic illness affect how you seek healthcare services?
Please explain or share your experience if you are comfortable!
💬 Discussion Topic: How do you seek ... - Research Opportun...
Research Opportunities
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💬 Discussion Topic: How do you seek healthcare services?
AnnaHUHealthUnlocked
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AnnaHU
HealthUnlocked
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34 Replies
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I am a member of a Medical Center. And since I worked for them, I just stayed with them.
I need help coordinating all of my medical details and aid programs, but I don't have any case managers for any of it. So I spend all of my time and very limited energy managing it all. I don't have much left for anything else.
I’m trying to have an advance statement written up & added to my medical records but so far everywhere I’ve asked say they can’t help with it.
I waited two years for an ultrasound scan on a shoulder injury from a bad fall ( possibly caused by an absence seizure). In that time I had regular private physio since NHS physio wouldn’t deal with it until the scan was done.
When the scan was done, the nhs physio lead calls to say they could not treat me . I had 3 calcified tendons . Once that physio lead saw the recent epilepsy diagnosis she said I couldn’t be treated unless /until the epilepsy was controlled so continue taking the maximum dose of 2 painkillers until that point. I paid for focused shockwave therapy at the private physio and that shoulder pain is completely gone now.
*edit⬇️*
In NON NHS healthcare environments, Ive been assured by staff that they know how to help if a Tonic Clonic seizure occurs while I’m with them & no fees for being unable to attend due to seizures. In terms of the NHS (other than my gp practice and the neurology department) I feel “dumped”, possibly indefinitely.
*another edit *
Thankfully universal free prescriptions are available in Scotland so that means less hassle for those of us with chronic illness.
I have extreme fatigue, weakness, breathing issues from being hypothyroid. I have had this for almost 3 years now. My endocrinologist asked my GP to arrange for a blood test to be done at home, as I am housebound. My GP, when asked, said that the district nurse was too busy, so I would have to either attend the hospital or surgery for it.
My GP is not understanding of how ill I have been, and still am. Unfortunately, no one understands what being hypothyroid means when the routine medication doesn't help with symptoms, but actually makes it worse.
Also, endocrinologists have limited understanding of hypothyroidism and treat everyone the same, without considering that every person is different. Also, the parameters they use are inadequate to calculate the correct levels of the different thyroid hormones, hence incorrect medication.
This forum and its administrators and posters have helped me to understand my symptoms and wrongly prescribed medications. However, there is no-one to help people like myself, because according to the medics in the NHS, once you are prescribed the recommended NICE standard medication, and a simple single thyroid hormone blood test "within range", you are 'cured'. Due to my deteriorating health, I became very depressed and referred myself to the local mental health team. Even after a failed suicide attempt, I was on the waiting list for 15 months before being offered any help. There is no-one to advocate for you, you are alone, literally. Also, most specialists only treat the condition that they are "specialists" in. They do not consider that one chronic health condition can cause multiple other issues. I've had numerous heart tests, xrays, brain scans, opticians appointments, dupuytrens contracture, elevated cholesterol, pre-diabetes, high blood pressure, all of which can be symptomatic of under-medicated hypothyroidism. And so the healthcare system, although under great difficulty now, is not there to help patients to get better, but to make the healthcare system function for itself and it's management, also adhering to NICE guidelines, that put cost before optimum patient health.
I think a copy of your letter to Health unlocked when forwarded to your local MP and local
rep on counsel may help .
My husband and I finally managed to get blood tests yesterday at our surgery with a friendly nurse and while there, I also saw a very nice new young woman doctor who seemed caring and interested but she is pregnant so she’ll be off on leave in a few months!
Hi
I have really struggled over the years to find decent Healthcare Services that can offer help with Chronic Pain. Usually I'll research online, when I'm up to it. With GP's and Consultants in my area it's trial and error as I have to explain my conditions and injuries every appointment as although health records are supposed to be shared, that doesn't happen! Occasionally a GP will say 'oh, you have Chronic Pain on here' but then get 'Try Pain management clinic!' As if it's a wonder cure! I'll explain Ive been before, and it didn't help and appointments tapered off to nothing....then what about physiotherapy! Nope, last time after 2 yrs, the head physiotherapist said because of my injuries it was pointless attending! I only get offered the same meds over and over again, even though quite a few have given allergic reactions. When lots of symptoms appeared over the years, it migrated to Fibro then Severe Fibro plaster. When certain symptoms got worse, I've had lots of names of possible conditions but no pointers to which specialist to see. Just asked which dept do I want to go to. Then months of waiting for appointments to no avail, and then GP's don't want to do anything as I'm off their hands under the hospital. One told me to go back when in a wheelchair! I just don't have the energy to manage my chronic pain alone. Even just had to cancel an appointment with Chronic Pain management nurse which I'd booked in hope of help, to be told I have to have a GP phone appointment. Here I go again, no help, no assistance and no effective Chronic Pain management....🤷🏻
I completely understand your frustration, I have been having exactly the same issues for 17 years (although I am already in a wheelchair ♿️).I just feel completely ignored by all medical professionals, I have numerous health issues and the health professionals just seem quite happy that they can blame another medical problem or say that they will have to wait until a medical issue has been resolved (which is never going to happen). I have got to the point where I'm not bothered about going to any appointments anymore.
Hiya
I must admit I am at that stage. I ask questions and that doesn't go down well at all! It's very rare a Consultant will think outside the box, if you don't tick boxes on outdated ideas then off you go, discharged. I've had my fill of rude Consultants, and being fobbed off! I come out of the appointment thinking that made no sense and no further forward. Pointless.
🤷🏻
Hello 😊 It's just a terrible state of affairs!
Unfortunately I need to see consultants every few months but I'm just tired of being treated like I'm thick 😑 like you say, you ask questions (how dare you 🙄) & they get an attitude!
I'm really at the stage where I'm going to start refusing to see them.
I'm really sorry that you're having the same problems as I am! It's just terrible wanting to know exactly what is going on with your own health and asking questions!
I hope that you get better treatment soon.
Hey just stay strong in mind, if Consultants are rude simply don't put up with it. It's a systemic failure in the NHS, old school attitude I'm afraid. Just because someone has letters after their name doesn't make them God! And their qualifications dont come with people skills! We all come into the world the same, and apart from surgery we all go out the same. Status in life is ego! And even basic civility costs nothing. At least I give the nurses a chuckle when a Consultant is rude and I pull them up😂There are hospitals now I refuse to attend, and Consultants I refuse to see, funny thing is the secretaries usually agree too when I say 'that Consultant has no bedside manner!'
Good Luck with your appointments and I hope you find a diagnosis. Remember you are not alone, and we are not thick, we have manners!😉😊
The awful truth is that I avoid primary healthcare. It is clear to me that GPs are limited in what they do for me by a rigid protocol that means any treatment available in the NHS is inadequate. Protocols are defensive and do not take the individual person into account. Protocol medicine is numbers not symptom led. For people who suffer from a chronic illness like myself this is a disaster.The risky upshot of this situation is that I self-diagnose. This has resulted in my request for a private referral to an expensive consultant who will, I hope, give me what I think I need.
Medicine is now schlerotic and unable to respond to the individual. It is BigPharma orientated and the basics of human health like nutrition have been sidelined for profit. It is far easier to dispense a drug than engage wirh the distress and suffering of the individual. What that gives rise to is complex drug-induced complications and damage. Until all this is reversed the NHS will continue to decline, facilitated by governments that have little idea what to do about it.
It is accessing it that’s the problem as we have to phone the GP surgery very early morning and join a crazy queue. Calling in personally and begging doesn’t work . Phone 111 and the advice is GP or A and E via a drop in centre miles away for an initial assessment. . Get that GP appointment then on a waiting list . See a consultant or specialist clinic then on another list . Agree surgery is needed then with me a 17 month wait on tablets that aren’t helping and weight increases as sluggish . Finally hit the operating table with complications . Sent home same day in a daze at 10. 30pm via taxi in torrential rain with no follow up appointment or advice as I was lucky to attend a private hospital via the NHS which was a privilege but left on my own to cope . This was accessed with persistence of phoning up hospital appointments waiting list clinic every month . Saying I could attend at the 11th hour , anywhere , anytime. Relieved as I feel better but mentally I felt stressed , life on hold and physically exhausted. I chose not to pay privately as I was told I was on a priority list whatever that meant . I was fortunate as I still had the strength to ask politely but with gritted teeth .
I have hypothyroidism and endometriosis, with bad fatigue, short of breath, sore throat for several years, swollen up eyes etc. It badly impacts my work. The NHS don’t seem to really do much for hypothyroidism apart from prescribe T4, so I am looking on internet for places that do private ultrasound and possibly biopsy on neck, and seek recommendations from these forums to how to access endocrinologist privately and get my active thyroid hormones back up to a reasonable level so I don’t get additional health conditions associated with low thyroid hormone levels.
I also order and interpret my blood tests using advice from these forums and books to monitor my active thyroid hormone levels as NHS just interested in pituitary hormone.
Cost is a worry going forward.
We have been told via a council newsletter that NHS services are going to be available on same site so I hope that means appointments to various clinics can be on same day if they have the tech available to do this which badly needs upgrading. Cost wise we have no public transport to the hospital. A train would mean in and out of the town centre then a 20 min walk and a bus would be town centre then back again to have a shorter walk so not just expense but time too . Prescriptions aren’t free for all and prepayment certs are good value if you can afford upfront costs but many people are in the poverty trap of trying to be independent but can’t access one freebie from a list of many you can get on benefits.
I get scared at times because I will not want to receive a bad result. I still try to keep to my appointments.
I don’t fear a bad result as it’s best to get treated as soon as possible . I do wish that people would let clinics know if they can’t attend though as plenty of no shows are really frustrating especially if you have waited ages for yours
I don't miss my appointments but can't help with the fear. I still make it with all appointments.
With reference how do chronic health sufferers seek treatment etc. There seems to be only two options private if you have the cost, or NHS via GP surgeries. There are some none medical referrals like some emotionl illness that can be self referral, plus physio etc . I find that none urgent needs are put on the backburner and routine check ups are none existent. Then if your not seen by Gp your presumed to be well &managing, in fact to the degree of hospitals thinking you have no illness either even when your taking drugs . I have a life limiting illness , chronic illness plus sight problems and some added minor health issues. Sadly I am seen as a NHS burden (cost wise)and my health will not be improving as my body ages. I also use other things to make life easier with chronic pain etc. I have remained at the same surgery for some years now as they understand what happened to me, but slowly the GPs are retiring and I have to see new ones with new ideas that may cause problems for myself as new drugs are not always best. Sorry but that's how I feel , but I do adapt to changes but not all are for the best.
I think we often know much more than them about our chronic conditions as we have the interest, as we have to live and work with our conditions every day. I just wish the medical profession would listen and not dismiss us. As they are often younger or healthy they often seem to write our symptoms off as due to just ageing …. or whinging ….
I feel you are spot on as friends have similar and the answer is strong meds and most GP’s think their jobs are done with a party bag of pills . I acknowledge though that their resources are limited but now it’s 2024 other avenues such as hydrotherapy and physio could be explored as after a bad car crash my insurance company paid for physio and it was better than a lifetime of drugs for my pain and I think in the long run cheaper . Drugs also trigger other effects and the cocktail I was prescribed made me sluggish hence exhaustion , bad sleep if at all so there needs to be a complete think about treatment so let’s hope young Doctors can be educated to understand and think outside the conventional box . Access could be local . I never see NHS physio attached to GP surgeries but it makes me wonder why not ?
Thank you i like the way you put it, I also appreciate focused1 and thier perception on the added effects of drugs on your health. I have extreme pain at present from my muscles plus deterioration of my condition , I am older so find my own solutions but if this was a younger person they may have something serious wrong that needs quicker action to prevent future burden on the NHS so I agree patients should not be fobbed off with painkillers in higher doses before it is established it is a chronic illness with no cure as the painkillers can mask something more synister. I don't see Gp Physio either mainly I believe because they are only available for short hours once a week at surgerys. One of the biggest problems is the limitations of treatment within the NHS all doctors have to follow set ways of doing things just like anyone in any employment , but who sets these ideas? are they set by government or other medics, or the latest trend. I often find they veer from the constitutions idea of patients best interest unless you remind them of your rights in no uncertain terms. Which usuallly ripples feathers, believe me it takes guts to challenge a NHS decision / government as its whats seen by the decision maker as value for money that may not be the patients perception. Sorry for long reply
Exactly, the process seems to promote specific individual drugs for everything instead of looking for underlying causes. And yes gp time is limited, they probably can’t work things out with a 10 min appointment once every couple of years, barely time to read the notes, so we work things out for ourselves but then they think they know better. Many women seem to be offered statins, painkillers, and antidepressants when they in fact need the correct thyroid medication. And bone health, correct vitamin levels, etc well now I find I should have been working on that a few decades ago ….
Exactly and grouped as being menopausal if they can’t find a solution. The question was about access but it’s not just access. It is appropriate and tailored individual treatment which I feel vets give to domestic pets with more respect, understanding and responsibility.
Agreed pets are treated with more respect do you think that's because they can bite.
You have summed that up well , another point is there is no follow up or continueation of the treatment with the same doctor for the item being addressed so you then become victim of varied opinions. Yes recently I was given vitamins without a thought as to side effects , interactions or dosage as I am getting older. As you say ten minutes cannot decide these things. Plus vitamin levels need to be assessed at a young age too late when your past retirement. Enjoy your evening.
I do tend to use specific ways to seek healthcare to reduce the burden on me such as verifying that the travel will not be too long or with too much changes of lines as that would be a supplementary mental hurdle once I would be in a lower state of physical or emotional well-being. I also tend to try to validate the relevant experience of the professional online before taking the first appointment and at the first appointment I use a few set questions to see if I would be able to open up with them. For exemple my GP was specifically asked about his experience with burnout and a specific contraceptive before I transferred to them as my primary care physician. Which also means that I can more easily rely on them if I need a letter of referral that correctly summarize my experience.
I find a telephone call mid afternoon, asking reception for a telephone appointment with a doctor for an 'urgent medication review' works quite well. At least I can speak directly to a doctor.
halloo! I'm not content with where I'm at, but I feel a bit more like I'm able to advocate for myself, eventually. I feel like I have to, everywhere, and I have to remember all my details al the time, because one hand doesn't talk to the other. the admin is horrifically not joined up, but the people actually are. and everyone i speak to is a human, and the more human they and I can be and are, the better the communication will be, and the better they can do their work and the better of I will be too. I have inflammatory systemic autoimmune stuff, and pain, and fatigue, and structural digestive issues, and am recovering from emergency cauda equina surgery with an unsure outcome as it was left for a year for my symptoms not ticking boxes. last week, my thyroid test can back goodish in the numbers, but I'm now over treated, exhausted but sleeping wrong, not hungry, nose running, nausea, palps, itchy. 250mcg too much. but the gp who ended up responding to my query 'so, what next' when the numbers came back said since the numbers are right, it's the right dose; quote, 'we can't just treat the symptoms'. I'll have to put up with being hyper instead of hypo. I've had a knee out of joint for over two years and have had a bit of battle to get beyond the exercise wall of self referral. have got someone to agree to detailed imaging, but the way has been three months ago far. I had to turn down the weekend appointment in the outside trailer that involves a walk including four flights of stairs, no lift option: aside from having a bad knee, I'm recovering from back surgery in your same hospital system.
so mostly I have to remember people are human, and triage my apportioning of energy to go after the next important health care avenue. I'm tired. but not dead.
One must advocate for one's own healthcare. I would like more collaboration between consultants from varying disciplines re whether the many symptoms a patient may suffer can be linked to having an MPN or are stand-alone. I am being treated by two consultants - a gaemotologist & a gastroentologist & ne'er the twain meet!! It results in feeling very isolated & a feeling that you are just a box to be ticked
I have been officially diagnosed as terminal, untreatable, I have not been given a specific date, I have many chronic medical conditions, rather complicated, so in effect they cannot do anything for me, but occasional routine tests, scans, change of medication [if possible] but they and myself have agreed, nothing more can be done for me, they are fully aware of my situation, anymore drastic treatment could undoubtedly be more dangerous to my general health. My general NHS in Northern Ireland including medication is free.
I was diagnosed with ulcerative colitis In 2007 , I have recently had to contact chrone/colitis charity to get in touch with ibd nurse. I have not been contacted or seen any doctrors since diagnosed they said I fell through the radar lol x
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