Have you ever had a holistic annual review with your ... - NRAS
Have you ever had a holistic annual review with your rheumatology team which includes any of the following? (Please tick all that apply)
When I see the rummy they ask you Questions and write down the answers. But never seem to act on them. Asked them to do the DAS TEST no response. Just say you are O.K for someone who is 70. I think how much better I could be if they were truly interested
I'm feeling that my team is neglecting me!
When I get my monthly bloods taken - I have never been given a monthly record card.
Last time I spoke to a rheum nurse for persistent pain her response - "what do you expect me to do"! Aaaa HELP
I'm now on Enbrel weekly but have lost confidence in my team.
I would move to a different hospital.
I had to ask for a record book from GP after I moved to wiltshire after old one ran out. They always used to fill it in when lived in Dorset, but here they don't bother so when I have my blood tests at GP's, I order a printout of result. Then fill it in myself.
Plus i used to get reminder calls if i forgot to make appointment for bloods. but here they don't bother. I keep forgetting and have only had 2 this year so far. Impossible to get appoint sometimes. Computers don't always allow you to make an appointment for a month's time. And lucky to get one within 3 weeks when phone up, so just forget. Am always being told off at hospital.
at the beginning I had my book completed regularly - then I went on to methotrexate injections still have monthly bloods but the assistant was told not to complete my book, insists she cant download my results - and when I requested my doctor to complete it I was told it wasn't important IT IS TO ME
My consultant is only interested in my joints to date.
I feel sort of second class. Had the disease for twenty years. Turn up. Get a tick in the box. Check they have the right info on their files. Go for bloods and BP check.
So maybe I am of no interest?
I was sent for a steroid injection for my shoulder 2 years ago. But then told the budget for that was cut. Then a month ago I had a phone call. Would you like to come for your steroid injection soon?
I don't think anyone cares much these days.
Holistic appointments? In my dreams.
I find that far more investigations and examinations occur if my rheumy has students with her. She is definitely more thorough then, but I have to make sure she listens to my responses as she's prone to anticipating the answers.
My rheumatic team are marvellous. They ask me loads of questions, check my joints and listen to me. I have been depressed and they wrote to my GP suggesting further treatment/counselling.
I feel they either dont listen or care. When I ask for help, advice or an explanation I just get told its part and parcel of my condition and I have to try to live with it!! I wonder how easy they would find it if the shoe was on the other foot hhmmm xx
I need surgery on my shoulder but was told to raise this with my GP to be referred. My GP has very little info about any changes in medication, except for a letter from my Specialist. I have to go to the GP for them to deal with the side effects of the drugs. They are not happy to do this as most of the time the drugs are new and they have no knowledge. My GP recently called me in for an RA review it was a joke I was asked if I smoked or drank, and advised to lose weight, he told me I had a low risk of heart attack. I was there 5 minutes it was a total waste of space.
I don't think it's your gps responsibility to refer you to ortho paediatric! I would go back to rheum.
The tender & swollen joint examination of my last DAS was only performed on my hands. I have fewer problems with the joints which are included in the DAS28 as it's my feet, hips, back & neck that cause me greater problems. For pain control I'm referred back to my GP. Unless I instigate it my osteoarthritis is generally dismissed.
All down to money, last time saw a consultant over 12 months ago, rhumy nurse gives 3 options , methotrexate, sulpha or hydrochlorixine - I ask about options and he shrugs his shoulders tells me there is none and also says no money in the budget. Now on sulfazalzine and feel crap, does the rhumb nurse care -NO. If I ring them a message tells me they are short staffed and it could take 5 working days to get back to me' last flare up my wife had to beg them to help me, my GP wouldn't gives steroid injection unless rheumy team agreed took nearly a week to get sorted. No one cares
I think they guess the DAS score as they never examine all the relevant joints for that test, just look at a few finger joints.
Agree with outcome. I have great faith in my rheumy and my GP -- both young women, very up to date and very much in contact with each other re my situation. I feel very fortunate with my medical care.
After blood tests when you see the nurse they just tell you bloods ok not really interested in how you are
I agree with your assessment of my responses. I have great faith in my Rheumy doc and my Internal Medicine doc. Both are young women in a large practice who are up to date and very interested in anything I have to say. They work together and track my situation with each other. I feel very fortunate, altho have had a problem finding a dmard that agrees with me,
What is a HAQ questionaire?
Can I see the answers again. I wanted to know what came 2nd etc...
Just scroll back up to the top Caza.
My rheumy team at Leeds are pretty fabulous. Appointments are very organised with weighed BP and urine tested first then detailed consultation with a senior reg then my professor comes in. I am always asked to fill in a HAQ questionnaire whilst waiting to be seen. I know if I need to see an OT, physio, podiatrist or am due a DEXA scan I will be referred. I have no complaints except for the lack of appointment.
It looks like I am lucky with the consultant that I have he works with me and my G.P. I am given a lot of control over how I am treated. My consultant will discuss with me what treatment options are open for me and then we agree on which way to go. After ten years of pain it is now under control.
i barely see my rhuemy once every 2 years, and have not seen physio for over 3years or ot for 10 i feel i feel very neglected and am in process of changing health care.
what's a Holistic thingy anyway?
I moved to Devon from the Chilterns area 3 years ago. My last rheumatology team were very good and it was a collaborative effort. I found their pain management course to be excellent and it gave me a greater understanding of how to manage the fibro alongside my inflammatory arthritis (RA) and osteoarthritis.
My Devon rheumatologist, however, is not interested in fibro at all and leaves the care in the hands of my GP, who luckily enough, is very sympathetic to the condition. The only time I see his rheumatology unit now is to get steroid injections in my knees up to 3 times per year. Full stop! Not even an annual review...
Worse treatment than ever - having been diagnosed with inflammatory diseases, including arthritis nearly 14 years ago and confirmed by several consultants, I moved and changed hospital & consultant. She found I had high DAS and other scored, 40 swollen joints, etc. I was then passed to her registrar out on methotrexate. I was told I didn't have any arthritis, and discharged, because I had been made very ill by unmonitored methotrexate (resulting in double incontinence, which I still have), and when refusing to use it again as an injectable, was "dismissed". I have asked for a second opinion, and so was "reviewed", and have now begun the process of "discovery" of the same high levels of inflammatory illness and arthritis. Is this just me? Or is it indicative of the NHS now, where if you're not working, and can't tolerate the cheap drugs, you're sent off to CBT with a "diagnosis" of fibro?
Hear hear!
The reason many of us don't work is because our conditions have not been managed properly by the NHS. So it's partly their failings that prevent us from being economically active.
They keep trying to fob me off with antidepressants. They sent a letter to my GP recommending I see a psychiatrist. The reason he did this is because I had a panic attack when he mentioned an MRI. I happen to be terribly claustrophobic. I have a phobia, I'm not mentally ill.
I'm in my early 50s, have had a lifelong fear of enclosed spaces and have just begun the menopause. It's easier for the clinicians to blame my issues on my mental health and hormones. I guess it protects their department's targets, push me onto someone else's list.
I forgot to mention, I don't think he was happy that I didn't want to take antidepressants. I've taken them in the past and it caused weight gain, I don't want my joints to suffer!
I see my rheumatologist privately. My GP has virtually no knowledge of treatment available for RA & appears to have no interest.
I must be very lucky as I have a brilliant consultant who spends ages with me, gives me all the right scans, tests etc and makes sure I understand everything. My RA has been monitored every six months for 15 years with the same rheumatologist every time. Unfortunately my GP knows nothing about RA and certainly appears uninterested in my condition.
Have just been "signed off" by my Consultant Rheumatologist in Dorset who says he can't do any more for me (I have tried so many different treatments and am intolerant or allergic to them all) and will only see me again if I develop RA in any new joints! I know the NHS is in dire straits, but still feel very let down by this complete lack of interest/care. I manage to get by on Oramorph for the pain, but am worried by the need already to increase the doses as I become accustomed to it. Luckily I have a caring GP.
I have never had a record card, have had only 1 DAS score check done since March and that was only because I asked about it. I didnt even get an eye test when prescribed hydroxychloquine and I have read several times that this should happen. It will be 6 months when I next see Rheumy and my GP is never informed of medication changes by Rheumy I always have to tell him what happened at my last appointment (if I remember with the brain fog). I do feel somewhat neglected by Rheumy team. sort of "this is what youve got now go and deal with it".
Wow there are lots and lots of people who do not have any follow up for RA and many other things.
Hi everyone
thanks for your contributions. Am now putting together my presentation for the 15th and I have to say reading many of your replies I feel profoundly depressed that so many of you seem to be getting way less than optimal care. Given all the knowledge and tools available to health professionals today to treat RA, which is SO much better than when I was first diagnosed over 30 years ago, this should not be happening and I will be saying so on the 15th to an audience of consultants and allied health professionals. If you are not getting the care you need, there's unfortunately no short cut to saying so and asking for a second opinion or changing GP/hospital. The NICE recommendations for annual holistic review were published in 2009 and by now most units should be doing what the Freeman in Newcastle is doing. If you'd like to read about that on our website, here's the link
nras.org.uk/the-annual-revi...
Ailsa Bosworth
Not got great confidence as your in and out quickly. Passed onto pain clinic which is good but Rheumatoid Team, well I am just as number!!
Reading the replies on here I feel so sorry for what other RD sufferers are going through. I must have the very best Rheumy team on the planet. I have been given first class treatment from the day I was diagnosed.
On one occasion when I was particularly bad the consultant told me that he hadn't a place for me in his clinic but that if I could get to the Rheumy ward at 8:30 AM he would see me! He did and we had a consultation that lasted a full half an hour.
On another occasion I was in such a bad flare that my body was so twisted I was the shape of a question mark. I couldn't straighten up. My angel of a Rheumy nurse, Bronagh, sat on the floor in front of me so she could look at my face...... I will never forget it. For the past year and a half I have been on the Bio Abatacept and it has transformed my life.
This was not always the case. I went down the Methatraxate, Sulfasalazine route like everyone else at the start of my treatment. after 18 months of nothing working or my system not tolerating I was eventually started on the Bio's. I began on Humira, which made me violently ill. I then went on Enbrel, again my body rejected it. Then it was Tocililamab, it made no difference to my condition at all. I was then put on Abatacept, the last of the Bio's to date. it worked for me within a few weeks and bar on bad flare it has continued to work. I am no capable of living an almost normal life again.
So you can see that I have had lots of experience with my team and am in a position to give an experienced opinion on their treatment of me.
On every occasion that I have had to contact my team, attend for infusions, phone to ask questions, attend clinics I have been treated with 100% attention, concern, empathy and excellent medical care. I can't speak highly enough of all of my Rheumy Team.
I live in Derry in the north of Ireland and consider myself extremely lucky to have such dedicated people looking after me. In fact now that I am doing so well I miss not seeing them as often as I once did, they became like a sort of family to me and I cared a great deal about them as we all got to know each other so well. There were times when I had other things going on in my life that were not helpful to my well being. At times like this they were equally supportive and comforting. They looked after the whole person, the entire me!
I am so thankful to the NHS for the care given to me and I will defend them to the hilt.
Thanks for listening to me.
My rheumatologist did tell me to keep taking the CoQ10, which surprised me! This supplement actually helps your immune system, where the medicine for RA given suppresses the immune system, so I thought I might be going against the grain so to speak! He said, No keep taking it!
My rheumatologist tends to talk very fast, reads notes on his screen, gives my knuckles a press, does the same with my shoulders and elbows through my clothes/coats? not sure how that gives any accurate information. Generally looks at me as though he is listening, but I get the feeling he has already made his mind up on what he's going to do without any discussion with me. It's like being railroaded. My doctor is good, does listen and will check the parts I say are swollen, or painfull and phones me when my blood tests have gone a bit out of kilta. I can and do ring my rheumatology nurse if theres a problem and she does phone me back and give advice. I'd rather be treated holistically though....
For me, my experience has been drastically different than alot of what I've been reading. My RA team assesses me holistically at every visit which right now is once every 2 months. I receive all my results with doctor's notes, conversations, updates to my treatment plan on an App called HEALOW. All of this comes in about 5 days after my visit. It also tracks information provided by Rx's (when something needs renewal) and a daily symptoms log which is great for discussion at the appointments. There is a message portal that I can sent info on and my care team response to me on it. I get my lab work and MRI imagine done in office. I feel as though my care team is my lifeline, I don't know where I would be without them. They work with me on everything, diet, nutrition, weight loss, mental health, general health, alternative treatments as well as traditional. My Rhuemy has called back on a Saturday morning at 7am and a Thursday night at 11pm, after I have called her service maybe 20 minutes earlier. I'm really kind of upset reading the responses on here. Having RA is hard enough, your care team should be caring for you. I have private insurance and pay the specialist fee deductible, however my care team does alot to help me keep my costs down, like savings cards for Rx's and really working with my insurance co. to get things covered or to expedite something that is "under review'. Alot of my meds are through the specialty pharmacy and they are not the easiest to work with and my care teams effort in those areas is just amazing. I feel supported by them.
I donk know how I would ask for this.
