Patricia Munn: A patient perspective on misinformation

In December 2018, whilst on holiday in Madeira I fell and broke my hip. I had expert care in Madeira and received a full hip replacement before returning to the UK (moral of the story is make sure you have adequate travel insurance – we did). The surgeon advised that it was unusual at my age (58) to require a full hip replacement and that on return to the UK I should request a DXA scan.

At no point prior to this (and I also have MS) did any health care professional advise me about any risk I might have of osteoporosis.

On return to the UK, my medical insurance allowed for me to spend a few days in a private hospital to aid my recovery and time for our home to be adapted for my use.

My GP was aware of my discharge, but I organised my own physiotherapy.

In February 2019 I had a DXA scan, and I was told that the scores showed that I had osteoporosis. I was referred to my GP and prescribed alendronic acid.

I was given one photocopied sheet which gave me advice on diet but otherwise no information as to how to manage this chronic condition. I was not offered physiotherapy (but had arranged my own) or ongoing checks. I have never had any follow up appointments apart from a six week check up with the surgeon that took over my care in the UK (a private appointment).

Alendronic acid did not suit me, but it was easy for me to transfer to Risenodrate through my GP.

Having been diagnosed with MS, I was used to finding out and researching support and information about long-term conditions. Consequently, I discovered the Royal Osteoporosis Society. It has been very helpful over the years both in terms of its information and guidance through its specialist nurses. I was not told about or found any information about FFFAP or the material that FFFAP has produced.

As I had already been diagnosed with MS I knew of the type of pathways to follow and how to find reliable information when diagnosed with a chronic condition but for many this is not the case.

A lack of adequate information can result in patients feeling confused and alone in the treatment of their condition, which particularly when chronic, can have devastating effects. As well as this, inadequate information runs the risk of patients looking for answers in the wrong place. With the rise of health misinformation, particularly online, patients risk being harmed by false advice and pseudo-science. It is therefore so important for patients to get the right information about their conditions, to empower and support them in their management and not cause further harm.

Having recently been diagnosed with a long-term haematological condition, the contrast in the support between this diagnosis and finding out that I had osteoporosis has been stark. I saw a consultant relatively promptly, have been assigned a specialist nurse to manage my ongoing treatment, have been sent robust information and signposted by the consultant to a very informative and helpful website.

Why is this not the case with osteoporosis?

I realise the presentation of my initial fracture was unusual and I did not receive NHS treatment in the initial stages. However, I was surprised that I was very much left to my own devices, ongoing monitoring has been minimal and happened only through my own intervention. It is for this reason that I have become a member of the patient and carer panel. Our voices are important and need to be heard, and misinformation must be addressed.