Hi, a few members have mentioned speaking with their fracture liason nurses.
I live in the UK and attend a bone clinic but have never been told of or heard of this kind of nurse.
In the last week I have had yet another fracture this is my second in 9 weeks.
I now have 6 in total, not on any treatment since my injection of Prolia last year.
Was due to have Zoledronic acid infusion but lockdown got in the way.
Can anyone tell me how you access a fracture liason nurse please.
Gosh, poor you to have had so many fractures. I’m new to all this but I’m pretty sure you shouldn’t be stopping Prolia without starting on another drug straight away. If you get in touch with the ROS someone will help you.
My FLN was part of the team at the hospital I attend, it sounds like your hospital doesn’t have one. After my DEXA scan when I was found to have osteoporosis the next step was an appointment with my nurse. I haven’t seen or had contact with anyone else although I know the dept dealing with my is rheumatology which I thought was strange I would have expected it to be orthopaedics.
I’m sure I read an article in one of the ROS magazines saying that they had set up the scheme or something like that so you should contact the Royal Osteoporosis Society - think there is a link on the right here to an OsteoSpecialistNurse and I think that could well be similar to a FLN.
Hope that is a help until someone with more knowledge comes along the answer your question.
Thank you for your reply.
I only had one injection of Prolia which I was told would all be out my system by November of last year.
I was due to have Zoledronic infusion but the bone clinic was closed because of the virus.
I do know that Osteoporosis and treatment for it is done in the Rheumatologists clinics.
It was a Rheumatologist years ago who sent me for my first Dexa scan, since that time though I have always attended the bone clinic and been seen by the specialists there.
I shall give the ROS nurses a call and see if they can offer any advice.
Thank you once more.
This is the link for ROS
You’ll be able to speak to the specialist nurses. They’re very knowledgeable about osteoporosis. Hope they are able to advise you.
Hello Sunseaandsand
Sorry to hear you have had another fracture, poor you you are having a tough time again.
Agree with Fruitandnutcase 100%, get yourself back into the system with some support.
I ended my Foresto injections on 18th June and by 29th June had Zoledronic acid infusion, scan delaid because of Covid etc. but do have a date in August, nothing else delaid, because of the problems I have had with fracture. You should have the same support.
I read about the drive to get fracture liason nurses in hospitals some time ago in ROS news, I was a bit disappointed to realise that the local hospital (the one I had problems with before I transfered to bigger teaching hospital) used the extra funding for the fracture nurse to train up their already in post OS nurse. I think very helpful if you are new to OS but have not heard from anyone who has had lots of fractures seeing a OS fracture nurse. It would be good if you post brings replys from others who have had such support, love to get more tips.
Best Wishes
Posy White
Thank you so much for your reply.
I am pleased to hear that you are being well taken care of now. Zoledronic acid seems to be the best option as a treatment once Forsreo has ended.
I have noticed by reading posts that a number of people are tolerating it well without side effects.
It is taken up by the bones very quickly so it makes sense that a yearly infusion is going to give less side effects than taking a weekly tablet.
At the moment with this new fracture even with pain relief I am finding it really difficult even whilst sitting, the pain is in my lower back again but around the pelvic and hip region it is awful.
Getting on to my feet is a big problem, and sitting to eat I am having to lean back into cushions and pillows on my chair with a plate pushed all the way up to me.
It is a nightmare isn't it?
Worst of it, is the closeness of the fractures because I am now back to the acute as well as chronic pain.
Sorry for the self pity, but we do have to have a moan every now and then.
It is appalling to hear that funds are not used for the purpose they have been given.
Much more is needed to be done arond Osteoporosis and the care of fracture patients.
I will keep pursuing to gather as much information as possible.
Take care, and best wishes.
Sun, Sea, and Sand.
Sounds like you are an NHS patient. We in UK have to realise it is NOT "envy of the world", and we have to fight for what we are promised. I managed to get a Zolendronic infusion last week at John Radcliffe in Oxford. It had been cancelled - but I started to phone and phone, made a nuisance of myself, and was given an appointment which went like one in a luxury private clinic. I arrived bang on time, went straight in, and senior nurse who stuck needle in was so efficient I genuinely didn't feel a thing. Now that IS 'envy of the world' treatment!
Hello and thank you for your reply.
Wow that is excellent news and first class treatment well done!!
Yes I am an NHS patient and I have to agree totally that we do have to fight for everything.
It is one endless round of phone calls and e mails, which when one is ill and in pain can do without.
It tires and wears you down, yet you have to keep at it till you get the result you should have had in the first place.
The frustration is beyond words, Tuesday of this week it took me 86 phone calls and the best part of the day before I even got through to my GP surgery.
Seems you and I are like-minded! In the next few months, cost-cutting will be rife, so these postings might give food for thought: aftercancers.com/covid-19-a...
Hydrotherapy - make sure your hospital pool doesn't fall victim to cost-cutting
aftercancers.com/benefits-o...
And don't rely on your GP having time to read Clinic Letters
I had to argue the point with the the osteoporosis clinic at my local hospital to get my Prolia injection. It was already a month over due & I was getting a lot of pain in my lower spine. Unfortunately my Osteo nurse had just left the job. I told them that I was at high risk of rebound fractures as this was my 5th injection. I did eventually get it done but it took a week of arguing with them. I really do think to deprive someone of this treatment would be bordering on medical negligence if they go on to fracture. It clearly states on the patient information leaflet that Prolia should be given 6 monthly and not be stopped without proper consultation from a Doctor. Patients should not have to fight & beg for their treatment it's bad enough having to put up with OP in the first place.
That's shocking. Well done on insisting they gave you the injection, but it's appalling that they weren't aware of the risks of delaying.
I agree totally, and well done to you for getting the treatment you needed.
It is apalling that any patient should have to chase things up themseves in this way.
From medications, referalls going missing, appointments, treatments and more.
We have to chase things up all the time.It is not a Covid- 19 problem it has always been the way of being able to move forward with health issues.
Hello again Sun, sea and sand,
I'm not a great defender of my local hospital but regarding the funding for the Fracture Nurse (It is appalling to hear that funds are not used for the purpose they have been given.) I don't think they did anything wrong, the OS nurse may have had the extra hours that the Fracture Nurse funding provided for.
Not that I want to put you off the Zolendronic infusion but I choose this option as a stop gap, I am unlikely to be able to tolerate oral medication so in the consultants eyes best in terms of bone building would be going back on Prolia, which I was too worried to do at this stage.
Picture the event just coming out of Covid lockdown I had the Zolendronic infusion. The side effects for the first time are a 1:3 of flu symptoms for a couple of day, so come day three when I still had a temperature oh, err....... I think the instructions were to call 111 ..... but fell back to sleep and re woke early afternoon feeling very much better... so relieved even though I was sure it was just a side effect. Putting up with not nice but manageable side effects lasting less than three days was okay by me!
I know sadly you're used to putting up with Fractures, but are you doing all the tried 'help' ideas? Half of these I may have got from you! Have any of these helped in the passed?
Heat pad ? Teens Machine? Support of 'good' pillows? Pillow(s) under your knees? 'Sleeping' in a sitting - lying position? Sleeping on a well padded duvets under you bed or sun lounger/garden chair? Using pads (when it's too difficult to move to get to the loo)? Using a satin sheet or slip-sheet? (that way the sheet can be pulled to help reposition you then no one needs to 'help you by trying to lift you'). Didn't help me but know the heat /cold gels have helped others.
If what you have been given for pain is not working do keep going back, because with out that recovery takes longer.
Try and eat - small and often (focus if you can on getting some good bone building foods)
Do very small movements to exercises,stretching fingers, wriggling toes, and if you can bigger movements lifting arms away from your body. I found it important to practice breathing as calmly and deeply as possible.
In my opion it's fine to use this site to have a moan and a bit of self pity....... yes we do have to have a moan every now and then, sometimes family members cannot cope no matter how wonderful they are, it's too much to see their loved ones in so much distress.
Keep going, best of wishes
Posy White
Thank you once more for your helpful advice and kind words.
I can understand your concern with the side effects of your Zoledronic infusion at a time like this, yet all sounds good now, and I have to agree less than 3 days of side effects sound pretty good to me!!
Yes I have tried just about everything or so it seems, I can increase the pain medication a little more which I am going to try, in the past too much causes me to be very unsteady which could lead to more problems.
I am told my low body weight makes tolerant of the strong drugs more difficult.
Like you the heat and gel pads do not offer any help, in fact the cool gel seems to aggravate things for me.
I have a T-roll, these are available from NRS website, a bit bulky but in between fractures work very well when lying on your back.
I also have sliding sheets which were a god send with the first of my recent fractures but I am afraid the fracture I have now is causing me to have real difficulties.
Getting on and off the bed and chair is a living nightmare, I have developed over time some pressure sores on one of my feet and at the moment I am in agony when my husband tries to place a soft pillow under my foot
What an ordeal these fractures create.
My only hope is that I can go a long time before anymore occour once this has healed.
Last year I was supposed to have tests at the Lung clinic which had to be postponed because of a fracture.
This year I am having tests on the heart which were postponed due to the Virus, they sent me an appointment for Moday next week which has had to be cancelled by myself owing to the fracture I have had.
If I am honest though I think I would have wanted to avoid going anyway as the hospital is in an area where the current numbers are quite high .
On one last note I do find breathing excersises of great benefit when trying to move.
Take care of yourself, keep in touch and I hope you make good progress with your treatments.
Hope you are able to access support ROS helpline was great with me,explaining about medication putting it in terms I can understand plus organising my thoughts logically, as appt treatment was rattled off and the indicators if I didn't wish to proceed then they would next see me when I fractured a bone thought NHS should be proactive not reactive... sorry for the bump... so hope they will be able to help you.
My experience to date is that OP is a largely forgotten or ignored condition that also fails to attract funding for further research. I was horrified by my GP’s ignorance of the condition and the lack of care from the practice following my diagnosis. The consultant was offhand and entirely focused on medication options and apparently does not intend to see me again for 3 years. I had to fight like hell to get my drug treatment of choice and have been offered no further advice or support since starting it. I’ve had more support from the hospital pharmacist and now Lloyds clinical home care who deliver the medication than from GP or consultant. I really feel OP needs a big campaign for publicity and proper funding for research etc - perhaps we could use this forum to find out if people would be interested in looking into how to start something going. I think it’s very much seen as a condition that “just” affects old women and we know how little value our culture and society placed on them. I’m 64, still work (for the NHS!) and have many plans for my future - but now have to accept that some of these are not achievable given the level of disability from compression fractures which I believe could have been avoided if my GP had referred for an X ray straight away.
Thank you for your reply and sorry for my late one.
My thoughts entirely!!!
I was diagnosed over 16 years ago with Osteoporosis (I am now 66 years old with 6 spinal fractures), and in the whole of that time nothing has changed.
I have voiced my thoughts many times to many people, even saying to the ROS nurses what you have just said to me.
In the fracture clinic of my local hospital they are displaying a poster that has been up years giving contact details for a local group for people with osteoporosis.
This group does not exist!!! and probably never has.
The nearest to where I live is over a 60 mile round trip away.
After my 4th fracture I was desperate to talk to others with a similar background. An occupational therapist gave me a number of a local group that had been set up for people with long term and chronic illness.
On calling and speaking to them I was informed only people with heart or diabetic problems could attend.
That was a real put me down.
There are so many people who when they hear the word Osteoporosis, they give a blank look and ask. Osteoporosis what is that????
I have had very bad experiences with 4 of my fractures from both gps and the hospital.
The frustration drives you crazy.
I know if I had attended my local hospital with these recent 2 fractures during lockdown I would have been sent away like all the other times. Being told I do not have fractures it is degenerative wear and tear!!!
How can one get help if they can not even recognise a fracture on an x ray!!
Yes, we have to fight and push and insist for help.
I too have had, and continue to receive brilliant help from my local pharmacy, their knowledge and helpfulness has been a god send to me.
It has continued all through the recent difficult months, they really do deserve recognition.
It is good that you are still able to work, but I do understand that the changes to our lifes that the fractures bring is very hard to accept.
I could write a book on Osteoporosis and all that it brings with it!!
There are so many different charities out there helping to fund research for so many illnesses.
Osteoporosis is missing off the list, a list which includes funding for cats and dogs!!!
Are we so little thought of???
Hi I live in the UK and have never heard of a bone clinic! Sorry to hear about your fractures.
Well they do exist, perhaps in the area you live there are none.
I have to travel 25 miles to the one I am a patient at, it is in a large teaching hospital.
I was sent there for my first dexa scan by a Rheumatologist and have been going now for ovet 16 years.
Even so they do not have fracture liason nurses.
I find the ROS nurses of much more help, and you can actually speak to one without having to wait a week for a call back!!
The metabolic bone clinic here is a specialist clinic within rheumatology. I think they may exist mainly in bigger hospitals. We are very lucky in Newcastle to have two major teaching hospitals with lots of specialties. Not that I’ve had much support from the bone clinic..
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