Following on from Margaret’s post about a month ago, I’m writing on her behalf today because she is still very unwell from a virus that she picked up 3 weeks ago and since two days ago has had the added pain and shock to her system from 2 extractions ready for her much delayed Zoledronic acid infusion.
You may recall that her consultant at The Metabolic Bone Clinic ‘overlooked’ her follow on treatment after she finished a 2 year course of Forsteo.
Following a phone call from a different consultant and as promised by him, Margaret’s dental surgeon was contacted. We met with him and an appointment was made with him for March 19th to have 2 teeth out. He told us that a particular registrar had been repeatedly phoning the dental surgery that morning. We recognised the name as being the registrar who should have phoned or written to Margaret months ago. When we started our return journey home, Margaret’s phone started ringing. She was too upset to speak to anyone because she was dealing with the truth that the date for her dental work was very overdue.
As we got close to home, her phone rang for the 5th time from the same number and Margaret decided she was now ready to answer. Sure enough, it was the registrar. We both found the call upsetting as he was now so desperate to talk to Margaret. The call lasted 10 minutes and during that time he repeatedly was saying the word sorry. What we didn’t understand was exactly why he was sorry in other words he was being very apologetic but not explaining what went wrong. What we do know, is that he arranged a date for Margaret’s infusion just 2 days after her health review with her dental surgeon. Of course it never just rains but it pours. Due to illness , Margaret had to cancel the 19th March appointment and had her teeth removed on the 26th. That means the review date is later and the infusion date is too soon because her dental surgeon on seeing how weak she is, has extended the review from 8 to 10 weeks.
Already the knock on effect of the registrar’s failings is that Margaret’s infusion date will be close to a year after ending Forsteo.
If anyone has any words of comfort that she might yet still be safe, then I would love to pass them onto her. I know our dear friends have already answered and it is comforting just to be able to share this with you all.
Thank you again sincerely, Steve.
We both wish you all a peaceful Easter XX❤️👼🏻🙏🏻
Written by
Angelicspirit
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I am so sorry to learn of these latest developments, particularly the role of delays and neglect, but also that poor Margaret has had a virus making her so unwell. It is so much to endure for you both.
I can't advise on the timing of the infusion - perhaps a call to the ROS helpline after the holiday? That seems a long time to wait when you are concerned. Hopefully someone will be along with relevant experience. But if good wishes from strangers on the internet could have any impact, I'm sure Margaret would be feeling much better and all would go smoothly with her treatment. Wishing you both the very best.
Dear Steve and Margaret. I can’t offer any advice, the best I can do is to say I think of you both often and wonder how you are getting in.
You and Margaret have had and are still having the most shocking time and I know people say ‘life’s not fair’ but for Margaret’s life really isn’t fair through no fault of her own. Listening to your story is heartbreaking enough - living through it like you and Margaret are just doesn’t bear thinking about.
If you wouldn’t find it too stressful have you thought of typing out your story from the beginning until now making it into a booklet and sending it to everyone who has had any involvement in Margaret’s care as an example of dare I say it ‘bad practice’? Not necessarily pointing the finger at or blaming anyone but just as an example of how easily things can go wrong and once they do go wrong how badly it can affect the poor patient.
I would also send a copy (by recorded delivery) to those responsible for planning and making decisions at the hospitals you have been involved with, the consultants, the doctors surgeries, the Chair and board members of the ROS, Health Ministers etc. Basically everyone you can think of. It probably won’t help Margaret but people in ‘power’ deserve to know how much patients can suffer through bad decisions, neglect and general lack of care.
In the meantime I wish you both a peaceful Easter 🐣🐥🐣.
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FORSTEO, TERAPARATIDE, AND BONE LOSS.
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