Professor David Haslam, Chairman of the National Institute of Health and Care Excellence (NICE) said on 2 October 2014 that NHS patients should adopt American attitudes and become more assertive to ensure they get the treatment they need. In an interview with the Daily Telegraph he said that too many patients were not being offered medications already approved by NICE and that they should become more knowledgeable about their conditions and ask for dugs which should be prescribed for them
It seems to me that it's essential to be assertive in order to get anywhere as a patient, I've had prolapsed bowel, polyps and IBS for four years and have frightful symptoms yet in all that time my GP and indeed the two consultants that saw me, one on numerous occasions, didn't so much as mention to me, antidpasmodics, or suggest their use, also I had to wait 12 months before I was diagnosed with a full prolapse and offered surgery and prior to that I was accused by the Consultant of forcing myself to go to the loo, my schizophrenia was actively used against me and as a blanket term to prevent a full investigation into why I was needing the loo 16 to 22 times a day. However I do feel it is a sorry situation if things are getting more like the USA as the situation out their with health care is appalling, no one gives a hoot, as I hear from American friends I chat to daily, we had an exemplary health service in the 60s and 70s and personally I would hate to see it get more cynical and underfunded than it is currently, just saying.
Haha! Hope he will issue that statement in writing and signed to all of us who have become expert patients! They actually have a scheme for patients with chronic illnesses so they go on courses to learn how to manage their problems better and reduce hospitalisations. A study on the results found that patients, particularly diabetics, met with downright brick walls from healthcare professionals which took away all the advantages. GPs even disputed the dosages agreed between an expert patient and their consultant and so undersupplied them and nurses in A&E took away medication so the patients couldn't use it and then were late with handing it back to be used.
My daughter was assertive with the consultant who said her daughter had laryngeal dysfunction which was causing her asthma (she doesn't) and was non-compliant with medication (she isn't, mum is a nurse) and wrote an action plan for admission which brought her to resus at least twice and she nearly died - but the consultant has now chucked my daughter out because of her requests for correct care. Not much loss - but the local hospital consultant admits he doesn't know what to try next. The prognosis is bleak - so we're hoping for the Brompton - but they live in Scotland.
Communication, communication, communication!
Eileen, I know exactly how you feel, I was forced to notate reams about my symptoms because the Consulrant wasn't listening and taking prejudicial attitudes to me, eventually I binned him off and asked to see a different consultant, eventually realising they just didn't like me and the new consultants attitude was clearly an attempt to silence me so I am now forced to see my GP to get a recommendation to a different hospital!! It's madness, why can't these people just do their job?!
They are paid, a lot, after all
Without getting too political all the parties seems to be offering a better NHS with extra billions - must be a general election soon? Still we can only hope!
Back to the tin gods - they think they know better than the patient! I'm very glad I have had good and listening doctors.
When we lived in Germany a close friend who was training as a paediatrician told us one of the first things they were told was "Listen to the patient/patient's parent - they know their illness and the child better than you EVER will"
Just recently I've seen a load of posts where doctors are questioning the patient's pain levels. OK, some people do lay it on a bit - but to tell me that post op or in PMR "you can't have pain because others don't" is downright rude.
Can I suggest a googling of the 2014 BBC Reith lectures by Atul Gawande? This year they are called "Why doctors fail", are available online and there is a edited version in the Guardian today.
Very apposite I think.
Thanks Eileen, I'll definitely take a look at the article in the Guardian, as avid reader of Guardian particularly
fiona, if you go to the Guardian fromt page for today there is a useful easy link to Dr. Gawande's first of four ) Reith lecture. You have the choice of listening or printing. I think the title for the series is Medicine Today.
Hi Eileen, first of all I am the stroppy patient. I have just received an appointment through for my DEXA scan - I asked for one and refused the aa until I had a scan to show if I needed to take the medicine.
I have reduced the Pred to 12.5 after 6 weeks on 15mg and I am ok but not brilliant,have some pain in my hips but no stiffness.
Anyway enough about me. If your granddaughter has bad asthma, then get her to the Brompton. They run 10 asthma clinics a week and the waiting time when we were referred 4 years ago was 11 days! My son had a life threatening attack because the house officer did not follow the instructions of the senior reg and give IV steriods so my son's SATs got down to 85% and he ended up on IV aminophlyn in HDU.
The team at the Brompton are fantastic and look for causes of asthma - my son's triggers are house dust mites, viral infection and grass pollen. We have a treatment plan and have not been in hospital since he started under the care of the Brompton. Prof Bush and the team are fantastic. Have a look at the hospital's website under childhood asthma.
Can someone tell Prof Haslam that most patients only get 10 minutes with their GP and many GPs will not deal with more than one issue per appointment (no idea where they trained to come up with this nonsense). The difference between the UK's National Health Service and the American insurance model is vast. It is not a matter of being assertive, in the UK it is more a matter of 'beggars can't be choosers'. I assume many people who use this site are either paying for their treatment or are insured. They should say if they are in the UK and are NHS patients as this might account for many of their medication and treatment difficulties.
Can someone tell Prof Haslam that most patients only get 10 minutes with their GP and many GPs will not deal with more than one issue per appointment (no idea where they trained to come up with this nonsense). The difference between the UK's National Health Service and the American insurance model is vast. It is not a matter of being assertive, in the UK it is more a matter of 'beggars can't be choosers'. I assume many people who use this site are either paying for their treatment or are insured. They should say if they are in the UK and are NHS patients as this might account for many of their medication and treatment difficulties.
"I assume many people who use this site are either paying for their treatment or are insured."
You assume wrongly: I think you will find that there are several of both USA and UK patients and, as far as I know, all the UK patients are NHS patients. There are one or two who have themselves paid to see a rheumatologist privately when they had problems with GPs or a rheumy who wouldn't listen. One lady I know was covered by company private health insurance but the others were added to their rheumatologist's NHS list after the first consultation which is a common practice by good consultants.
Both US members and NHS members have difficulty getting correct treatment for PMR. In both cases it is usually lack of knowledge on the part of a GP about PMR that causes the initial problem - and then it compounds. I had 5 years of no pred PMR because the GP I usually saw didn't know PMR can occur without raised bloods and the clinical picture is paramount. When I saw a different GP in the practice she knew all about that. I hadn't seen her before as she was part time and had been on maternity leave. That's why I often suggest seeing a different member of your practice - it can make a big difference even with a 10 min appointment. For many of the US patients too the system is not so different - as anyone who has had to use medicaid or the free clinics will attest. If you have no money in the USA you are far worse off than someone in the UK, however poor the service at your local GP may be.
They aren't "trained to come up with this nonsense" - it is managers who run the practices attempting to make more appointments available. Unsuccessfully it would appear. Some doctors happily spend a bit longer with the patient who needs it - and profit because the patient only comes once not having to come repeatedly to get an answer. To a great extent it is a result of patients demanding an appointment and that it should be on time. Here, also a state run system, I have to turn up and wait my turn as do the rest of the patients - I can find anything from walking straight in to waiting an hour and a half. No one cares, we know when it needs more than 10 mins we will get it too. We also have small co-pays for everything other than seeing the GP - a 15 euro fee dissuades people turning up at A&E for a plaster for a cut or because they have a cold. You are exempt these if you have a small income so, again, no-one is denied treatment when it is necessary on finance grounds.
I will echo EileenH's comments. Few of us here have any kind of private insurance, certainly not me. In more than 15 years since PMR was symptomatic, although the initial diagnosis was difficult to obtain due to preconceptions among male doctors at that time, the care and attention I have received since gives me little cause for complaint.
My medical history is now a complicated one and although I have moved home, areas and GP's in that time I am still satisfied with my care and the routine attention I get.
Sorry, I pressed the reply button twice and then could not remove the second post! I'm wondering if the horror stories I see on this and other forums, of misdiagnosis is entirely due to ignorance (ignorance is no excuse under UK law). In my experience, and I am in the UK as an NHS patient, I believe that I was victimised. I was told by local people that the GP I was with had her 'favourites' and that she was known to push patients who live in certain high price property areas into private treatment. Though I live in a nice house, I don't own it and her assumptions about my bank balance are therefore unjust. This is something that is happening now in UK medical practice, judgements about people's capacity to pay. So many, due to politics also, have private insurance, at least in my 'middle class' area of London. The problem comes when you ask your GP for blood tests, blood pressure checks on all 4 limbs, referrals, scans, etc., and don't get them. Then you change GPs and go on changing GPs until you run out of practices in the catchment area where you live. From what I am told, due to its complexity, no-one is interested in GCA despite the very serious and long term dangers of mismanagement (which are so often underplayed).
Ah! YOu have reminded me about the Expert Patient Programme. I will put the link on a new discussion page :-)
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Both PMR and GCA are autoimmune disorders, neither of them have an easy test and whilst PMR is the most common arthritic problem in the over 60s what you will find is that the people who have problems tend to be younger. It may not be an excuse but they simply don;t expect to find a 51 year old with PMR - default tends to be fibromyalgia which until very recently had no real options for therapy. PMR can only be managed with pred - and they are taught to be terrified of pred.
To say "no-one is interested in GCA" is a massive exaggeration. There are several extremely active research groups, at least 3 of them in the UK. The greater problem is that, at present, there is no real test that is 100% accurate and it is very rare. It is classified as an orphan disease and in the vast majority of practices no-one, not even the older GPs, will have seen a case and diagnosed it themselves, never mind have managed one.
You may be in London, you may live in a fairly wealthy area - but please do not assume that the whole of the UK suffers with the same problems. This is spouted all the time: rising house prices, availability of school places at the school "I want", the list is endless. London is London and suffers from its own problems - most of us have the choice of a single school, 2 if we are lucky. Our housing market is stagnant at best - certainly not rising prices. There is the choice, again, of one GP practice, if you are very lucky there may be another. And for the vast majority of us there isn't a hope in hell of private medical insurance on a pension so no, our doctors do not make that assumption.
I do not deny there are problems with the NHS, with getting PMR looked after properly - I am as shocked as anyone at the level of ignorance. But I was never denied the care - the doctor I saw just had never come across it before. When I saw a different member of the practice it wasn't a problem.
Remember that these forums represent quite a small proportion of patients. For one thing, the ones who are computer literate in the first place. And for another - the ones who met with problems and went on a search for more information. I would say that in the local support groups there are probably 10% at most who figure here, the rest are generally happy.
I was discussing the Expert Patient Programme with one of the top UK PMR/GCA researchers just recently - I'm not sure there is one for PMR/GCA. And if there were it would open up other problems. For better or worse your average healthcare professional does find it difficult when faced with a patient who knows more than they do about the care required - a recent survey has been published with regard to that. How you get on with such healthcare professionals is greatly dependent on your attitude to them. Despite having come across a few difficult consultants, my experience with GPs has been predominantly positive. It is possible to avoid the more difficult ones even within the NHS - and if you live in the south east it should be even easier with the choice of at least 2 of the top PMR/GCA experts living within a short train ride of London.