In this last year of COVID19 have you had re... - Vasculitis UK
In this last year of COVID19 have you had regular contact with your consultant/specialist nurse? Please leave any “appropriate” replies.
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I feel as if the Doctors no longer care. That’s my experience
I was diagnosed just before lockdown. Follow up care has been very good.
Quite happy with my current care level with 6 monthly telephone appointments with specialist nurse and dr at NNUH. Still having monthly monitoring blood tests at local dr surgery.
I have to say I think I’ve been very well looked after, regular appointments, one face to face, others over the phone and one ct scan.
I’ve been fortunate both with Prof Mason and local Rheumatologist. Mix of telephone appts and face to face depending on stage of pandemic. 😀
My treatment and follow up after major flare has been excellent especially given the circumstances over the last year
"Regular" contact with consultant but not as often as usual.
I’ve had telephone appointments.... 2 with consultant and one with junior doctor. I did have to chase to get appointments as at one point last August I seemed to fall off the radar. I was told to start reducing my steroid dose last September... unfortunately this led to me developing psoriatic arthritis. I was given a face to face appointment after a number emails to specialist nurses. I know we are being protected but I do wonder how much is being ‘lost’.
Had a heart attack during the year, which complicated things a bit!
My treatment plan is being managed by my GP. I have regular blood tests when I reduce my steroid dose. I can also contact my GP by phone to discuss any concerns/ issues.
At Royal Free, default for regular vasculitis clinics has been by phone with consultants, although still necessary to attend the hospital for blood tests. A face to face appointment was granted without argument when I requested it. Also a regular appointment has just been brought forward, and will be face to face, after I reported a new problem a few days ago. So no complaints at all - and these consultants have been heavily involved with Covid.
All my appts, rheumatologist physio, GP, dentist, opthalmology, have all been good, even though some have been phone ones
Three telephone consultations during pandemic but they were from no one I recognised. The medical professionals gave their names but not title
I was diagnosed with very active LVV in Sept 2020 (asymptomatic) and told I would have a further appointment in 3-6 months. I contacted my consultant by letter when the appointment didn't materialise by the end of the 6 months as I had questions to ask and felt in limbo. I had a response several days later with a date for a telephone appointment. The appointment was not with my consultant but with his research fellow who was very polite but I didn't feel really satisfied with the call or with the plan for going forward. My next appointment will be face to face in six months time. My NHS clinic doesn't provide contact details for speaking with a specialist rheumatology nurse. I do appreciate that the hospital has been overwhelmed and is dealing with a weighty backlog.
Last appointment via telephone lasted 4 mins 50 secs via another dr within the clinic.
Consultant has been brilliant with detailed telephone consultations and Rituximab as planned. Doctors surgery has been extremely difficult to get through on the phone with doors locked and no available appointments. Have managed to speak with reception and one nurse but no doctors despite struggling post Covid.
Very little support , I have felt totally forgotten by nhs
should have had my yearly check up last august but heard nothing i rang the consultants secretary to ask about shielding was told to look on government site february this year the doctors rang with covid injection appointment and asked if we got the letter to shield we never got it
I was diagnosed at Christmas and I have seen consultant 5-6 times since then. I am based outside of Edinburgh.
No contact whatsoever. My last annual appointment with my RA consultant was March 2020. I have 3 monthly blood tests but my last recorded results in my book are Nov 2019. Today I was at the hospital pharmacy collecting my medication and I passed by the RA department I used to go to over a year ago and asked about my blood test results. I was told to ring the hospitals switchboard and speak to my consultants secretary!?! This was the very same woman who used to give me my blood test results! I'm very demoralised to say the least. 😔
Can't fault my care. My consultant, Dr Little, at Lincoln has seen or spoken to me at 8/10 week intervals.
I have been living with Urticarial Vasculitis since starting a course of immunosuppressant therapy for Asthma and Hay Fever in 1983. It took 19 years to diagnose and no medication has been of much help except steroids, a real life saver on many occasions. My last doctor told me never to talk to him about vasculitis ever again after I refused to keep taking Methotrexate following a really bad flare up for the second time. He also referred to vasculitis as just a mild irritation even though I had felt and was looking like a victim of germ warfare for the past 36 years. I have also been living with neuropathy in my feet for the past 22 years and steroid induced diabetes for about 15 years. No one is remotely interested in my illness and it is not possible to speak to a doctor any longer.
Had 3 monthly telephone consultations with either the consultant or someone on her team. I have bloods taken at my GP surgery 2 weeks beforehand and results are sent to vasculitis team and discussed during consultation.Very happy with the way this has been dealt with especially given the Covid crisis and the hard work these doctors are dealing with this presently.
I have been very fortunate and have had extremely good care from all my consultants throughout the past year seeing all of them face to face and telephone and also via video calls between 3 hospitals Poole, Hammersmith and Addenbrookes. I’ve also had nerve blocks and Botox for my headaches because of my GPA as I have brain involvement. Also MRIs, X-rays, infusions and also managed to get my 2nd vaccine bought forward ready for my next Rituximab. I feel very grateful.
I’ve had 2 phone consultant appointments with Royal London which I was very happy with. I’ve had too chased my delivery of medicine that RL prescribe each renewal as they haven’t sent it across to Healthcare at home. I’ve had various problems - undiagnosed sinus problems, new joint pain, eye involvement, had nasendoscopy cancelled & still waiting for new app. Meanwhile antibiotics are keeping a bay my red nose!! Hoping Canx investigators start again soon. X
Very happy with care from local hospital- had face to face appointment with rheumatology consultant a fortnight ago when I thought my symptoms were flaring but she feels it was hypersensitivity reaction to Pfizer vaccine
18 months after my PMR-like symptoms surprised my GP by responding to prednisolone, I still have no firm diagnosis, have not seen a specialist and am on no treatment, apart from OTC paracetamol. Just had my second AZ jab.
One telephone consultation in the year plus one blood test.
I feel completely let down by my current Vasculitis doctor. He has never kept any of scheduled phone consultation since Covid hit. I chased after him for weeks every time I was given the date. I realise NHS is really a hit and miss sort of service. If lucky, you have a lovely caring doctor and nurse team, if not, it feels as though nobody cares and cannot even get through the phone line.Only this forum is open to me. We are very lucky to have Vasculitis UK
Had a letter too. Consultant Organised an CT or MRI of my brain. Wrote to me with the results and confirmed the plan we already had for another face to face in May.
One consultant has kept in touch every 3 mths and my other I havnt spoken to for a year or two till this month cause I had a flare
Not what I would call regular, but some contact with my consultant.
Specialist centre very good. Local hospital where iv is given less follow up.
Time between consultations by phone is now more than twice as long as the request by the consultant. I have been told that my meds won’t be reviewed or reduced until I have face to face consultation, and in the meantime I’m not having the tapering I was expecting; 18 months since anything was reduced.
Excellent care, face to face, telephone and in clinic. Great support from nurses and excellent response to questions at Addenbrookes. Couldnt be happier
