Morning all. I posted my recent DEXA experience on Sheffield Jane’s thread the other day, but thought my own thread might be helpful.
Briefly, i was due to have my 2nd DEXA scan in May at the local NHS hospital. Covid19 happened, I didn’t get an appointment. Understandable, but disappointed as have Rheumatologist app’t coming up on 10th August and she has been pressing me to go on bisphosphonates. Have been on pred since Nov 17 & DEXA in May 2018 showed I had some osteopenia and mild osteoporosis, but I wasn’t on any vit D or calcium and I’d had a hysterectomy induced early menopause and only very short period of HRT.
Commenced on High dose Vit D course & then regular supplementation and changed diet and increased exercise. Agreed to defer bisphosphonates until results of 2nd scan due May 2020. So, an important scan.
Last week received letter from hospital to say all non-urgent work being cancelled and that the radiology team had reviewed my records and concluded “it is it not appropriate to undertake this imaging examination at this time”. 😡
Anyway, cut a long story short, I have written back to the hospital pointing out the error of their ways!
Meanwhile, OH said “Go Private”. I’m a retired NHS Sister, so this doesn’t sit comfortably with me. Net result though is I found a fairly local private hospital who does Dexas. Rang GP Thursday and asked for a referral. Private hospital rang me yesterday. I have appointment for scan 5th August. £190.00 I can ill afford to spend, but health comes first. I have an important decision to make and it can’t wait. I will have the results in time for my rheumatology appointment on 10th Aug and can make an informed decision. This has taken a huge weight off my mind. Information is power.
I am fortunate. I have knowledge, don’t suffer fools gladly and not on benefits. For many people the decision to deny them screening and diagnostic tests will result in distressing outcomes. The letter I received from the Trust opened with the statement that they are “moving clinical staff from their planned work to ensure they have enough nurses and doctors to care for those with the greatest need. This decision has been made at national level and non-urgent care will not be prioritised during restricted access.” “As a result, ALL non urgent activity has ceased with IMMEDIATE EFFECT.”
The Trust is not currently overwhelmed with C19 patients! It is struggling for other reasons (major staff shortage, summer holidays, lack of beds, money etc) and the Govt is wetting itself that people are going to die due to non-COVID problems that have not been diagnosed/treated during the crisis because of lack of NHS capacity. They have a huge back log of work and A & E is back to its very busy pre-COVID state. We have a perfect storm!
So fellow PMR sufferers, be prepared for cancelled appointments and having to fight your corner. Many of us have struggled to get the care we need since diagnosis and it’s about to get worse. Stay strong, stay safe, stick to your guns and good luck.