just wondered if anyone else is having the same problem as me, it’s impossible to book an appointment at the surgery with a Dr of choice but keep being placed with locums. I’ve tried to speak to the surgery but everything has to be done by messaging now. I feel as though I’m banging my head against a brick wall.
It’s the same at the hospital, the Rheumatologist retired just before Covid and I’ve been seen by two locums who knew nothing about GPA and the last one accused me of wasting her time. Neither of them spoke very good English and as I am now profoundly deaf I had great difficulty understanding them. Any advice on how to deal with this problem.
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valwood
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I noticed that you live very near to me . It was a locum who first sent me to rheumatologist at west Suffolk. They then sent me to London for diagnosis where the treatment is excellent. I’m interested to know if you get rituximub . West Suffolk would only give it to me if it was funded from London . I wondered if this is because my vasculitis was not diagnosed here . You must make it clear that you don’t hear well . Maybe you will get a new consultant. I think ipswich has a good name , or at least it did .
it appears to be the formula/protocol implement of your particular trust. Some trusts have a pocket of money that is set a side for more expensive treatments.
hi so sorry you are having a difficult time arranging an appointment with a GP who knows about you and your illness.
I would send a letter to the practice manager stating why you need to a named GP and that you have a rare and complex illness and difficulty with your hearing.
You may find you need to wait a few more days but they should accommodate you.
I had to do this in the states. I got auto moved to a new GP when mine got promoted. This GP wants nothing to do with my complex illnesses. I wrote a letter to the head of internal medicine and sent it certified….. it sure if there is something like that in the UK. Sending it certified alleviates them saying they never got it!
I often find that some locums can be quite caring as they are not bogged down in the admin and office politics, so are freer to concentrate just on the patient. The days of the family doctor who we know and love seem to be over sadly.
I find it difficult to understand some people living in UK!! Do you speak a foreign language? I know that I have a bad accent when I do, I can hear myself.
Hi Valwood, I think the route to take is what has been suggested here but follow it up or CC it to your local MP and make sure you detail your local practice. That’s what they are there for. I am afraid when it comes to Doctors (GPs in particular) there has been a big change in attitude since Covid. Now this sounds controversial so please don’t think I am sabre rattling but one of my Renal Nurses said because the vast majority of practices and GPs went from face to face consultations to over the phone they have got used to not being as busy, reset and reevaluated. At hospital level a lot have retired and what vacancies have been filled is by Doctors who havnt a brilliant command of English and don’t have that “Patient Care and understanding” attitude because it’s not a priority in the countries they originate from. They are competent individuals but are used to dealing with totally different systems, demands and attitudes and that’s not thier fault. Last year I was rushed into Darlington Memorial with what turned out to be low Sodium, I was in a right state but I was constantly accused of taking drugs, pulling out drip needles when none of it was true, it wasn’t a nice experience. It’s the way it can be now I am afraid.
extremely rude and unprofessional. They may be a Dr but they have no manners. I am sorry for you and I feel your pain and frustration. Be polite, keep your voice in a lower tone, not shouting. You may wish to start a diary, not a bid long winded one, a line or two each day.
Record the day date and time.
Who did you speak to and was the result satisfactory to you.
How this carryon is affecting your physical health, your mental health
Confidence in the Dr and have one or two Drs to work with. What you don’t want is to start your story at every face to face consultation.
It’s easy to see a Dr who is well out their comfort zone and they ask questions which are not particularly relevant, and I am ok if they have a google before they come and see me.
My first introduction to this “merry go round nose being stuffed up had an op. On two other occasions i was nebulised at GP surgery. An asthma diagnosis was made. I told the Dr it wasn’t asthma. The second time I was nebulised again another told me “you have asthma so get used to it your given diagnosis is still asthma. There was something not quite right. I was a retired GP and listened to what I had to say and offered to refer me to a physician with an interest in allergies. It took another asthma exacerbation I was admitted . I was in A&E until 5am +++ and the rest is history. It took a long time to get a proper diagnosis and the treatment. And them my life took on the worst journey and it has plagued me for 16+ years.
Start a file keep all your hospital notifications of clinic
Note down when appointment is changed by you, or indeed the hospital and why it was cancelled?
We old hands can wax lyrical and go on and on. Enough for tonight. I’ll bet your head is very busy. This forum is highly recommended, it will teach you and guide you and remember most of us have a form of vasculitis. Look after yourself, you need to look after yourself. You can always come to the forum and ask more question, or help another poor soul that starts on this journey, for the rest of their life. Best of luck,, sending you “very special healing hugs”, invented by one of my grandsons for his great great grand granny who love them.
It is becoming a joke to see a doctor. Takes me sometimes an hour to get through on the phone. Just booked an appointment as I have red marks appearing on my face & I have to wait 4 weeks for an appointment . Really not good enough.
I try to phone early for appointments but you can’t get through on the telephones it’s an absolute joke. I am thinking of changing my GP but seems they all have the same problem. When my symptoms got really bad & I didn’t know what was wrong I thought I had rheumatoid arthiritis as was in so much pain but they wouldn’t refer me to rheumatologist. I spoke with the practice manager who told me I had osteoarthritis due to my age via the phone. Six months later & deteriorating finally got Rheumy appointment diagnosing Vasculitis GPA with kidney involvement lucky for me I was slow progressing but could of been fatal.
I moved a year ago so have limited contact with my surgery. I did recently have to have an appointment and spoke to the receptionist on the phone and was asked which doctor I would like to see. I did have to wait three weeks for the appointment though. For anything vasculitis related, other than the need for antibiotics, I wouldn’t waste time with the GP I would phone the specialist nurses at the hospital. If you are not getting the right care at your hospital you should ask your GP to refer you to a specialist hospital like the ones already mentioned. I know that means having to get a GP appointment but I’m sure it will be worth it in the end. I speak from experience because I did this 11 years ago. I know that I get the best care I can possibly hope for in our depleted health service. The problem is this is so stressful for you and will be detrimental to your health. AmyS1 suggestions are excellent. I know they have a good ent dept at west Suffolk as I’ve been in their care. One of them specialises in vasculitis issues. Good luck it takes a take to fight your case but this is your health and you need to do it.
The next available appointment is at the end of June. Unfortunately the specialist nurses at Ipswich Hospital don’t seem to know anything about Vasculitis. My rheumatologist left pre Covid and I have been seen twice by Locums who don’t know about Vasculitis. Im with immunology at Addenbrokes and they keep me supplied with rescue antibiotics.
Sadly there is a big problem with recruiting GPs and Rheumatologists in the UK, especially rheumatologists and not all rheumatologists have an interest in vasculitis, sadly.
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1st Appointment with Vascular Surgery
Newbie ANCA blood test 
Just diagnosed with GPA and trying to keep positive 
