‘Hit and miss’ might best describe
current NHS treatment for Osteoporosis
In typical NHS fashion, its post-code lottery could decide what treatment you get – good, bad or indifferent.
My Oncologist had arranged for me to have regular DEXA scans, and one day he casually announced “you’ve got Osteoporosis”. And that was all.
It wasn’t until I was receiving treatment in Italy, and was suddenly given a whole lot of extra tests that I realised this condition was serious, and I needed to do something about it.
The Italians immediately sent me off to a specialist physio, who gave me a raft of special weight-bearing exercises to do when I got home; I then joined a hydrotherapy class, where we jumped up and down, did some big splashes and really got the muscles working. Then I was told to see my specialist in UK about tablets. Didn’t like to admit I didn’t have one, but when I got back I asked around and found it was a Rheumatologist I should have been seeing – so went to see one immediately.
As usual, it’s up to us to make sure we get best possible care. So if you are diagnosed with Osteoporosis – or if you are even the tiniest bit worried….
See your GP
This is usual advice we are given. What happens then can depend very much on your GP’s interest in subject; some know all about Osteoporosis, and can help negotiate the minefield of treatment and pills; others haven’t come across it – why should they know what to do, when they have so many other calls on their time?
So it’s up to us, and these steps might help:
1. Google Osteoporosis treatment in your area to see if there is a support group near you.
2. Search for a local hospital that mentions what it does about Osteoporosis, and ask your GP for a referral there. Some hospitals are very good at treating this – others haven’t got their act together yet. You have the right to be treated out of your area e.g. when I moved to Oxfordshire from London, I discovered there is a post-code lottery here, so I asked to be referred back to my Rheumatologist specialist in London. No problems – I visit him there, and I am entitled to hospital transport to take me there.
You are entitled to be treated wherever you want to go, but your GP will probably want you to go to their ‘preferred’ hospital; this might not be the best for you. So see https://aftercancers.com/how-to-find-best-treatment-for-you/
and insist you want to go to the hospital that seems best for you.
3. Ask for a referral to see a Consultant. Once there, they should ask a lot of questions, will want to see your latest DEXA scan (you can ask for a copy to show), if you haven’t got one, demand one immediately. Once the Consultant has seen if you have this condition, and how bad it is, you will get referred to a senior Physiotherapist.
4. Make sure the Physio is a senior one with an interest in osteoporosis. These are usually the physios who deal with elderly – as this is an ‘older’ person’s condition. Then DO the exercises as often as you can – this is really important.
5. Dieticians can give you advice about what to eat and drink. Milk is important, but if you can’t drink this there are alternatives. There are other foods that can help, and a good diet is important.
6. If you are prescribed drugs make sure you follow instructions carefully – DON’T take Alendronic Acid (weekly tablet) unless you are able to sit upright for 30 mins whilst it settles in your stomach – otherwise it’s uncomfortable!
7. And be very careful, as from now on, even the slightest knock can produce a broken bone. If you fracture bones, you may find bed rest is the only way they will heal – and believe me, that can take a long time!
8. Belong to the Royal Osteoporosis Society. I have found their Helpline nurses extremely helpful and knowleadgeable. https://theros.org.uk/
What next?
Utopia would be a Fracture Nurse in every hospital – they are coming, so make sure you demand one for your hospital.
Special exercise classes are available abroad; we should have them here, but again it is going to be up to us to demand these. I met a physio last year who was keen to start classes costing a small weekly fee; sadly she has moved on, so it’s back to square one. But there is nothing to stop you, and friends that might back you up, asking and asking.
- Get your MP onside.
- Ask your local Healthwatch to lobby for classes
- Age Concern and other charities organise exercise classes in some areas – their members get osteoporosis too.
- Ask your Consultant if he would back classes. And the Head Physio
- Belong to the Royal Osteoporosis Society and see if they have any local schemes in operation. https://theros.org.uk/
Further information:
Royal Osteoporosis Society https://theros.org.uk/
Good chat forum: https://healthunlocked.com/