I have read the NICE outlines for RA. They are indeed nice. However they have no statutory meaning. I am surviving reasonably well on medication but have little meaningful understanding about how I shall decline. My access to medical professionals seems as slender as for everyone else.
An appointment to review my RA had been set up, the first GP version since I was diagnosed at Christmas 2020. The day before, I felt unwell and my heart rate became irregular and much faster than its usual 60-65, peaking at 105.
I felt better the next day and attended my appointment. I told him about the previous day's events and he decided he had to test me throughly. Fortunately all seemed well. He said there had really been little point in the testing since my symptoms had disappeared. I wondered how it might be possible to organise symptoms to match the only access available.
Some blood tests and an ECG were set up on the following few days. He said that if their results suggested a need he would set up an appointment, though there was really no prospect of a normal appointment for some weeks.
No urgent appoinment was set up, so I assume that my heart is OK. The RA review had been wasted. I have no idea if and when there may be another.
I feel quite ignorant about my RA and its prognosis. I appreciate that the NHS is overloaded, understaffed and underfunded. However, The comparison with the ideal (NICE) guidelines is remarkable. If it were for someone else in my family I would be quite angry.
However, I am already old and of little economic value. There is probably a good administrative case for euthanasia, though that may be morally and administratively tricky.
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Colaba
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have you had a look at the NRAS website, there is lots of helpful information and support there for RA? They also do various publications you can download or they can send you paper copies, you might find them useful. Their helpline also might give you some support or help you with problems accessing your doctors. I know that seeing rheumys/nurses has deteriorated but they can’t tell you how your RA will progress/deteriorate really as we all have a different RA journey. All they can do is try to stop it progressing and get your RA under control, if you feel you have had bad care you can contact PALS at your hospital.
do ask us any questions you have ( bear in mind we can’t answer medical questions) and we will try to support you. I hope your heart episode was one of those one off things and your RA continues to be well controlled 🤞🏻
Thanks Kitty - The NRAS website and the personnel and their compassion, patience and publications - some of which I have now read, are being an enormous help to me - I am not alone now... They have just put me in contact with an NRAS local representative. Great expectations...
Getting in touch with 'relevant' medical personnel is a 'minefield'. Parts of the country vary - personnel vary from helpful and sympathetic to downright rude and 'couldn't care less and don't bother me'' attitude. 'Somebody' told me when leaving a clinic - 'it's not in my job description' when I asked if I needed to see the nurse before leaving the clinic. A male nurse heard, was very kind and inquired from a relevant person. At the time I was upset but now I find it sad - but maybe a 'sign of the times' - and quite humorous. I must put it in my list of excuses why I shouldn't do something - eg cleaning!
I've been 'old', nearer 90 than 80 , and a carer for some time but enjoy being ?slightly eccentric and still hope to change some things! I have nothing to lose!
I got very poor responses from the local NHS and 111 when I became very ill, stiff and unable to get out of bed 5 months after a total knee replacement. Neighbours' and friends have kept me going... I'd looked after my husband for 13 years and for the last three years he was also diagnosed with dementia. Finally, my niece came down from the north and I managed to get a car to take us to A and E in a London Hospital, where I'd worked over 50 years ago. That was on New Years Eve. The young doctor was amazing got blood tests done immediately and ordered appointments for scans and to see consultants the following week. Within two weeks I was admitted seriously ill. My husband had to go into care - not adequate - and he was admitted to local hospital where he died - in January.
Survival is hard work and it's difficult to find competent staff in this sad NHS 'climate' However - good luck to everyone suffering that they may navigate to wise and appropriate care - and with the help of NRAS. Thank you.
Oh dear Colaba, if only we could arrange for our symptoms to be present when we manage to get ourselves a much prized face to face appointment.
Having been in a similar position I was told that the blood tests can show if you have had a heart attack and I think the ECG can also show that.
Im sorry that you feel that you are old and of little economic value although I suppose in a way we must be of value to drug companies for the drugs they sell for us to take and to our doctors for the bonuses they get for putting us on statins, vaccinations etc etc so perhaps we’re worth more than we think.
Hang on in there and I hope you feel better soon. 😊
I don’t think you’re being fair as some of us are not far behind you in age. But GPs do a sort of review or catch up of RA because of shared care agreements although in reality do little and that may be because it’s a specialised field. Thing is one 80 year old will be like my mum who was active despite having some health issues like Oestoporosis etc and another 80 yea old moreover 60 year or even 50 year old will be far less well for all sorts of reasons. You are right the NHS is hard pushed at the moment but RA is managed and the vast majority of people will have a normal life span so perhaps you’re asking the unanswerable. Like how long is a piece of string, we are all very different in our disease activity levels and it’s management.Could you ring your RA team and ask for an appointment and ask for help? I’d also suggest you talk to NRAS as they will be able to advise you much more.
In all fairness I have no awareness of any 'team' . That was one of the sigificant differences between the listed, but not required. nor aimed-at, best practice and actuality. I am trundling on without much distress but am ignorant of the inevitable process of decline. To be fair I recognise that to be a pretty-well inevitable problem for all of we old folk.
Unfortunately your gp only has an allocated amount of time to see you. You raising concerns re your heart, has meant that had to take priority to ensure you had no serious heart issues, which is what we would expect of any Dr, and I guess what you expected or you wouldn’t have mentioned it.
You’re wanting answers to questions no one can answer. Rheumatologists can only try different meds in the hope they find the combination to slow progression. The NRAS website has many leaflets on coping with this illness to explaining the different meds, and how they help. Also you have the option of phoning the helpline to talk through any concerns you have. You could also phone and ask for another appointment with the gp as you didn’t get to complete the review, although they don’t have the power to switch your Dmards or biologics, only your rheumatologist can do that. The nhs is under pressure, I have 3 hospital specialists, who assume if they don’t hear from me I’m doing well, and they focus on seeing the many waiting for 1st appointments. However if I have an issue, I phone them and have always been offered an appointment to discuss. So you are well within your rights to contact your team to request a review.
A sensible rebuff. My gripe is that the pretence of a 'team', is just that, a delusion. I am not so stupid that don't understand that every ill person will react to illness individually. I am not special, except to myself and, I hope, some of my family.
What is decribed as best practice is wonderful but is not required, nor even aimed for. To pretend otherwise is dishonest.
In my view it’s not worth worrying about a GP review because they are not RA specialists, so they focus on whatever is currently their own view of your health. They do not prescribe and therefore cannot change what your consultant has prescribed so it’s usually a general check on how you are, which it sounds as though it’s what you experienced.
Dear Colaba, you are as important as anyone else, and you should be treated as such, I hope you get a better consultation next time, I once complained about a nonchalant doctor many years ago, not for me as I had been diagnosed years before, but for new patients that had to put up with his attitude, best wishes Sarah
The Doctor is a nice, competent, very busy man. The irritation that sparked my current 'outburst' in these pages was that he pointed out that his examination of me was of no use since the symptoms had gone. I said they had ceased when I told him of the event, but felt it was relevant to him as my GP. He decided to use the time for a thorough examination and to set up blood tests and an ECG. It is very difficult to ensure you are in the presence of a doctor precisely when symptoms occur.
On reflection, it seems I should not have told him. In that case I might have had a few minutes to explore the likely progress of my incurable condition with my GP for the first time since I acquired it at Christmas 2020. The very few previous meetings had been about managing and developing medication.
But surely it was better to get your heart concerns checked out with tests, would you have been happy if they’d done none and just talked about your RA? I wouldn’t. I think you need to forget about trying to find out how your RA will progress, no one knows the answer, concentrate on making your RA as controlled as you can be so you can get on with your life. As for the guidelines I never look at them unless I have a problem as the whole system has gone to pot so why worry about them as long as you get the care you need, which it seems you do. If you desperately need an RA review with your GP then get back onto them about it but bear in mind that GP’s have little say in what our rheumys do so done expect big changes. Good luck.
I know what you mean. I am an Expert by Experience for my local trust and I sit on the personalised care strategy board. Personalised care is being touted as the newest thing that will transform the NHS and make everything better. However, I keep trying to point out to them that as long as we have NICE guidelines we will never have personalised care.
It is weird how on the one hand clinicians don't bother to follow them, but on the other hand if they can follow them to save money they will. For example NICE guidelines say to offer T4 only for hypothyroidism and to only offer T4/T3 combined if the patient still has symptoms on T4 only. And if that is the case to refer to endocrinology. T3 is more expensive than T4, so what do GPs do? refuse to refer to endocrinology so basically no one gets combined therapy, especially if you are a women.
But that's okay, because they pile on the psychosocial, the social prescribing, the art classes, the weight loss groups, the walking clubs! Feeling fatigued due to your medical problem? No problem! Just attend an art class and you will be cured! And if its doesn't fix things, well, it must be the patients fault. (heavy sarcasm).
I too read the NICE guidelines when I first suspected I had an rheumatological autoimmune condition in addition to Hashimoto's thyroiditis. I kept on giving them openings to follow the guidelines, but have now given up. They have decided to follow the bit about me not having enough joints involved to allow them to move on from methotrexate which didn't work for me or suit me and ignore the rest of it.
I know the NHS is struggling, but if they spent less time rearranging the deck chairs and more time providing basic medical care, we would all be better off. Leave the psychosocial care to the public health experts. No wait, the current government removed their funding!
I'm 46 and I asked the RA nurse could they not put me down, I was partially serious. (I'm a vet in normal life) I was told they don't offer that on the NHS so I suspect there aren't any NICE guidelines.
Age isn't a factor in value, if the young had the wisdom of the old they would understand to value experience.
You have to make a fuss to get seen... some days we just don't have the energy.
I'm sorry to hear you have been ignored. Being old is no excuse for poor treatment! The NHS is not underfunded...its very badly run in my opinion. I have worked within its walls so not news to me.
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So frustrated! :-(
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