I have had 6 compression fractures. I had a dexa scan in October after a private MRI scan had discovered the fractures and my GP referred me to the osteoporosis clinic. I was told that I would receive an appointment by the 31st December.
I have just phoned to see if they have any cancellations and they said that I had been referred as a routine appointment and that the waiting time is 12 months and I could expect to be seen in September. The waiting time for an urgent referral is 7 months. So I am thinking of going private. Has anyone any experience of going private. I expect you have to pay for the medication yourself.
When I saw my GP I was reluctant to take bisphosphonates which I believe he can prescribe because I also have ulcerative colitis and have difficulty swallowing as well as acid reflux.
Given the choice would you prefer to be prescribed bone building medication of the bone retention medication.
Thanks for any advice.
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Lopera
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If I were in your situation I would contact who made the referral and ask that they re refer you and mark it Urgent.
With your other health issues they will not expect you to take any oral kind of treatment.
Going private gets things moving so quickly and if you can fund the initial consultation I would highly recommend it.
At the end of your Consultation you will be offered the option of going through the NHS or carrying on privately.
I can’t see any reason why you should not go through the NHS. you will not have to pay for any of the treatments for Osteoporosis through the NHS. and will be given choices of which treatments are best for you.
Going private will get you where you want to be so much quicker. With 6 fractures a private consultant will be more than happy to help you. X
Thank you for your reply. An urgent referral is still a seven month wait for me. I can fund a consultation but it's the cost of the medication I'm not sure about. Just to clarify, when you say you are offered the option of going through the NHS or carrying on privately, does that mean the private consultant can prescribe medication which I can get through the NHS?
I'm really worried about doing any more damage and want to get on some medication.
If you can find a local NHS consultant who takes private patients, at the end of your first consultation he may ask or you can ask if you can be transferred onto the NHS .
By staying with the NHS, after your initial consultation you will not pay for any treatment or medications and will usually be under the same team as you would be if you continued to pay privately.
As an example I had been referred to Gastro on the NHS and did not want to wait even though I was only 3 weeks away from being seen.
I paid privately to see the top consultant at a hospital close by, he asked me if I wanted to fund the tests and scans myself or be transferred onto the NHS.
Having done this before I chose NHS because I did not have the long waits for the Scans etc. everything happens so much quicker when going privately.
It should not be that way but this is why more and more people choose to do it x
Yes I think that's the way to go. I'm based in Nottinghamshire and I'm finding it difficult to identify a consultant. Should I be looking for a rheumatologist? If I google osteoporosis, I don't come up with much.
What I have always done is to do a search of nearby hospitals and look at the profiles of who I feel is the best to suit my needs. I’ve then called the Secretaries and asked if the given consultant sees private patients.
They are usually more than happy to be of help and will give you a number to contact the private hospital or clinic where you can arrange an appointment.
It is a sad situation and appalling that we have to do these things to get the Care and treatment’s that are of utmost importance to our health.
Please let me know how you progress and I wish you the very best, there are so many people who will not even try the treatments offered and then others like yourself desperately seeking to have treatment as soon as is possible.x
It does seem like this area is in a bit of a desert as far as osteoporosis consultants go. I have asked a friend who works in rheumatology (but not osteoporosis) and he doesn't know of anybody who sees both NHS and private patients but is asking his colleagues today. I will also ring the ROS helpline.
That is a long time to have to wait considering you have already had six fractures. Have you thought of calling the ROS helpline for advice or could you try another hospital?
Hi Lopera, how very frustrating for you. I went private after getting the xray and dexa scan, just for a consultation about treatment. It cost me just £270 . I was advised that for my multiple fractures and in view of my IBS the best treatment would be self-injecting with periteramide for 2 years. He said I had no choice, if I didn't do anything I'd keep on getting more fractures .
He then arranged for the NHS hospital that organises that treatment to ring me. They rang a few days later and got things moving. I did then have to wait about 8 weeks for the treatment to start, as here in N Ireland it is contracted out to a private company, Lloyds Pharmacy.
But that private consultation certainly did speed things up and it was great to get top notch advice on it. Over here the private consultants all seem to work in the NHS hospitals too, so they seem to be able to transfer you to the top of the NHS waiting list! May be different where you are. Good luck with your journey
Hi Pineau, I haven't heard of periteramide but it's definitely the way to go. I just need to find a consultant. I think Christmas on the horizon will add further delay. What a messed up system we have. My daughter lives in Spain and they appear to have a much superior health service.
Sorry to hear about your wait time. I went privately as I couldn’t get appointment with nhs doctor. I fell and broke my hip end August which resulted in full hip replacement and a Dexter scan with osteoporosis diagnosis. I had an appointment with private doctor at Nuffield and he was brilliant and very knowledgeable regarding osteoporosis. He gave me the option of medication or a 6 monthly injection of Denosumab. After doing some research myself I am going for the injection this week. Hope this helps.
I have 7 fractured vertebrae and to be honest I saw a private orthopedic specialist he just wanted me to take more drugs. I’m on steroids for pmr. But I refused found my best with food, natural remedies and exercise. I saw the same specialist on nhs. For me it was really a waste of time. I know do the best I can either my Gp. My dexa hasn’t changed since 2015. I do lots of research and get help from these groups there is one for osteoporosis too. Good luck. Life is certainly a bitch
It makes me sad to read your situation because it appears that your system doesn't see this as that important that you have to wait 7-12 months to have someone deal with you. It's also sad that because of this system, you are here asking others for advice on how to proceed. It also demonstrates that those with private insurance and money receive better service and attention. Our health care system in the USA has problems like this and those with money have better insurance. This is so wrong in many ways. I hope you get relief sooner and that your doctor takes a more active role to help you get proper counseling sooner.
Here in the USA we have a For Profit health care system. The wealthier citizens get good care while poorer citizens don't. If you're in the middle between rich and poor, you really struggle for decent care and often health care becomes the number 1 reason for bankruptcy in the USA. Yet, citizens fall for that garbage that we have great health care here. You may have seen a shooter killed a CEO of a large health insurance company. Rage is brewing.
I had 4 spinal fractures and pelvic fracture. None of these caused by falling. My wait was 18 months through NHS to see Consultant Rheumatologist. The one I saw also worked privately at Nuffield but only worked half a day a week and also had waiting list. I decided to wait for NHS appointment and I am now glad I did. This gave me time to start to heal and start to look after myself. Once I saw Consultant things started to move pretty quickly and I was prescribed Romosozumab monthly injections through NHS, delivered but funded through a private company. I was told to qualify for this treatment I needed to be within a year of last fracture and also this needs to be the first treatment for OP. Obviously other health factors were considered along with this as well. I think there seems to be long waits for Osteoporosis treatment throughout the Country mainly due to the fact that so many hospitals do not support Fracture Prevention and this is something the ROS have been actively campaigning to change. I really do help you get some help soon
That's interesting to know. My fractures are apparently mostly healed.
It's so short sighted to wait until someone has a fracture before addressing osteoporosis. I read that in Italy, women have a bone density scan every two years after the age of 50.
Hi Lopera, It's good to see someone else here with so many compression fractures (I have seven). My last DEXA scan was a few years ago now, so in view of the number of fractures, my GP has taken the line that I probably do have osteoporosis, and after a bit of a wait, I now get denosumab injections twice a year (as well as taking the Evacol D3). I refused to take the alendronic acid after taking it for six months because I read about the side effects. I've managed nearly a year without a new fracture, but I'm bent over and today I am in a lot of pain due to doing a few jobs around the house - chores really. But I think I'm doing well on the Denosumab. I know this doesn't exactly answer your question but what I say is very relevant.
It’s good to hear you’re doing well on Denosumab. It’s not a great club to be in. I still cry every day at some point. I suppose eventually I’ll become resigned to it. Best wishes.
hi I have been seen privately 6 months ago and had 2 MRI scans and other x-rays and paid for all tests but then my GP prescribed drugs on the NHS and I haven’t had to pay for anything else drug wise. Hope this is helpful.
No i was prescribed Alendronic Acid and Risendronate but had side effects but I had my first 6 monthly bone injection Prolia 6 weeks ago prescribed by my GP
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