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system not joined up

Graceissufficient profile image
18 Replies

Is there a gap in the system?

After a bad fall (full flight of 13 stairs, headlong) I was discharged from hospital with a few pages of medical notes in small print.

I wonder how many have the energy to go through them carefully, decode them and pursue them?

My imaging in A&E showed up a compression fracture at 1L and a lot of serious degeneration in the cervical spine.

I don't think anyone would have flagged that up for me if I hadn't spotted it.

When I was well enough I rang the GP and asked for a Dexa scan. He said he wasn't sure if he could refer me (! i am 70) but offered to put me on the drugs straightaway.

I insisted and of course got the scan.

BUT - is this normal? Do gp surgeries not have the time to go through hospital notes in full? They are trying hard - but it seems to me a lot of people may have conditions appearing incidentally on xrays which need follow up but are not picked up.

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Graceissufficient
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18 Replies
Fruitandnutcase profile image
Fruitandnutcase

Ouch! What a horrible accident. I hope you are feeling a bit less sore now. Well done for spotting your compression fractures and the degeneration of your spine. I would say you were very lucky to be discharged with medical notes.

As for your question, I don’t know for sure but I suspect from various comments I’ve seen on Healthunlocked sites it would appear that in some cases unless your doctor is expected to do something specific your notes are just filed and dare I say it forgotten.

In my case I changed my medical practice in 2021 and up until now I have never seen the same GP more than once so I don’t know them and they don’t know me. Perhaps I’m just not ill enough and if I was I would fare better.

Pre-covid I used to see the same doctor at my old surgery and we knew each other but unfortunately all that changed with Covid. It sounds depressing but I’m not sure the doctor you see (if you ever happen to get a face to face appointment) even cares.

You really have to do your own research and follow things up.

Armagnac profile image
Armagnac

Another example of poor GP service. Most seem completely ignorant on Osteoporosis, they hand out poor meds and don’t refer you. I could mention loads of poor service from local gp on other health issues. By the way you should have been referred to the Fracture Liaison Service. See this from Royal osteoporosis society. theros.org.uk/blog/what-is-...

SpikeDinosaur profile image
SpikeDinosaur in reply toArmagnac

You're absolutely right on FLS, but sadly as the ROS article says only about 50% of NHS trusts have them. I know my local trust - doesn't have one and there is a local support group trying to help fill the gap.

LM100 profile image
LM100 in reply toArmagnac

I think there are thresholds above which GPs refer you. Possibly based on fracture risk or having had fractures. But this case sounds as though it is over that threshold and A&E should have referred you. But the hospitals don't want your care coming out of their budget (see my post below).

Fruitandnutcase profile image
Fruitandnutcase in reply toLM100

In my case I fractured both bones in my wrist and it was A&E who referred me but I asked about a DEXA scan and my hospital has a FLS. I got the feeling even if I hadn’t asked because of my age and what happened I would have had the DEXA anyway.

I think the problems come when you complain to your GP about backache, it doesn’t seem to occur to them it could be a fracture. In 2021 I flew through the air backwards and landed on my tailbone.

Trying to get anything done turned out to be impossible - even though it was on my notes that I actually had osteoporosis, the utterly useless NHS doctor I eventually managed to speak to on the phone told me that I could not have an X-ray and that ‘it is probably just a touch of osteoarthritis, it’s quite common at your age’.

I was in absolute agony and could barely move let alone walk. Eventually I hobbled along to a really good local private physiotherapist who specialises in spinal rehab and he referred me for a private MRI which showed that I had indeed fractured my sacrum.

Bottom line - I suspect your chances of being diagnosed are better if you actually break something and go to A&E who may or may not refer you for a DEXA than if you go to your doctor with back pain.

ABwn profile image
ABwn

I was lucky after I fell. My rheumatology dept sent me for xrays, MRI, then sent me straight to the fracture clinic. Am now being seen by the spinal clinic. I consider myself very lucky with the treatment I'm receiving. I have also been looked after by physio dept. Hopefully you will receive the necessary medical support. Take care and have a restful and happy Christmas.

LM100 profile image
LM100

I believe there is a problem of 'whoever diagnosed it pays for it'. GPs don't want to be responsible for some osteoporosis cases as it means their management comes out of the surgery budget. Hospitals sometimes try and push the less serious cases back to GPs because they don't want to be responsible/foot the bill either.

Rooruby profile image
Rooruby

Sadly alot of nhs and gp services are broken. I have to chase everything and fight to get what you need. It is true they just push drugs on you explaining nothing. I insisted being referred to a osteoporosis nurse who isbhelpful but to be honest ROS nurses are the best with support and advice. Keep fighting and do as much research as you can good luck x

NarrowboatLady profile image
NarrowboatLady

Yes . There are gaps everywhere due to a burgeoning system, or rather the use of many different “systems”. There is certainly a problem with discharge summaries being read by GPs. My discharge summary after a traumatic wrist fracture (ie, not a fracture occurring as a result of a minor fall) was not read by a GP for over a year. Stupidly I didn’t chase it up. Always chase things up!

I was not at home when I fractured my wrist, however all the referrals to fracture liaison worked well where I was treated. However the fracture liaison team there could not follow me up as I was out of area. I received copies of the referrals sent to my GP within a week. I just presumed I did not meet the referral criteria for follow up in my locality.

GPs do not have access to your hospital records. Which is bonkers.

Viking1822 profile image
Viking1822

What a terrible fall and worrying about your surgery. In the summer I had a suspected TIA, the Drs were wonderful and I came home with a letter telling my surgery I needed monitoring on several levels. Did it happen ? No I had to remind my Dr. Reading Patient Access can be interesting though. Good luck. Can you change to another Dr ?

love42france profile image
love42france

While GP’s are also secretaries these things will happen. Even in France where we normally get prescription for what we ask for, and we have to do to the phoning around and book our own specialist/clinic to get an appointment. My back damage after a similar fall down an oak staircase was picked up the full body CAT scan but I had very severe concussion, so saving my life etc came first. It took back further pain before X-Rays were taken and my GP put me on Prolia for a year then stopped when it did not help. The fractures got worse, rebound effect, and I have a trapped nerve that is extremely painful long term. The word osteoporosis was never mentioned and as I still have some damage due to the fall, I never thought about it but put it down to the accident. Eventually I was sent for a DEXA scan and it showed Osteoporosis. By then I had had enough and asked for a referral to a Rhumatologist. I got the referral on the second demand. I asked other professionals and decided who I wanted to see but the wait was 3 months. She is fantastic, put me on infusions of Zoledronic acid. I have annual blood tests prescribed by my her on prescription from my doctor without having to go back to the Rhumatologist and which I send to the her. Now the doctor even organises a nurse to come and do it. The nurse also does my Zoledronic acid infusion at home. A different system totally but same delays and muddles. My year on Prolia with no proper follow-up treatment will have made my back damage worse. I am 78. The incessant pain is my greatest problem. My severe concussion was caused by Tramadol and I can’t take NSAIDS so my painkillers are restricted. Best of luck. Most health services have got worse after Covid and the French are putting money into improving the situation but it is a long haul.

Mongy90 profile image
Mongy90

Yes they don't care same happened to me. I too had to insist on a dexa scan 1 year after I broke both ankles. My physio has done more for me than the Doctors.

Catseyes235 profile image
Catseyes235

I do hope you’re recovering well. I’m so worried (paranoid!) mabout falling on stairs I always take my time and use the rails. I recently had a knee replacement so was taught how to go up and down with crutches (you carry the spare crutch with the crutch you use on stairs) which was a bit scarey to start with.

I always get a copy of the letter sent to doctor and I’m guessing that doctors are limited in time for reading them thoroughly but should pick up on any points the hospital highlights.

I too have had to look up many terms on line from surgeon regarding my recent knee replacement. Luckily I haven’t needed to confer with my surgery. As far as I know you should be ascribed one particular doctor but doesn’t mean you can see them every time. I may have to wait to see mine but I’m happy to see anyone if it’s an emergency.

Lottyplum profile image
Lottyplum

Two years ago I was referred to my first NHS Endo appt after 40 yrs of being on Levothyroxine. She ordered loads of blood tests+dexa scan -then discharged me at end of appt! Eventually received results (copy to GP). Didn't hear anything from Endo or GP after! Then 12 months ago got private appt with Endo+sent all info re latest blood tests, Inc the paperwork from NHS Endo. Private Endo informed me I had osteopenia! I hadn't a clue+was quite shocked! So I walk/run at least an hour a day+take Bonebalance and high dairy+protein diet and D3/K2 in the hope to prevent more bone loss! Maybe there's more I can do?!

Graceissufficient profile image
Graceissufficient in reply toLottyplum

Shocking for the patient and for the waste of NHS money, huh? Why do tests if they are not flagged up when out of range?

How much vit D are you taking? You may have to repost your question in the forum to get well informed replies on what is best. You've clearly read up on it but there's no substitute for the experience here.

Lottyplum profile image
Lottyplum

I take 4000 units of D3/K2, magnesium, selenium (via Brazil nuts), zinc, fish oil, quercitin, vit C.

Graceissufficient profile image
Graceissufficient in reply toLottyplum

Sounds good to me - but I'm new here.

Lottyplum profile image
Lottyplum

I understand from this forum that D3/K2, magnesium, selenium +zinc in particular essential for us hypos!

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