Osteoporosis organisations and local support groups

The National Osteoporosis Society (NOS) is a UK charity that provides information and advice to people with osteoporosis. It works towards influencing change, to improve resources and services and to support research to improve treatment options and patient care (see resources).
Many of the people we talked to had heard of the NOS through their GP, other health professionals, friends and/or family member. They emphasised the quality of their publications and the assistance they have received from the Helpline staff. Some identified the NOS as their most important or, in some cases their only source of information and advice. Those people who had used the NOS Helpline recommended it to others. Several people we talked to were thinking about becoming NOS members (see also Sources of support for people with osteoporosis and Information needs for people with osteoporosis
Several people said that they were given no information by their GP about the NOS at the time of their diagnosis. Emma who was diagnosed around 1994 had never heard of it and would like to get in touch with them to find out if there is a local support group in her area. Sarah who was ‘officially’ diagnosed in 2008 wasn’t given any information about the charity either. She was pleased to find out that there is such an organisation. Irene found out about the NOS when she listened to a lady taking about it on a radio programme.
Active members
Several of the people we talked to are or have been active members of the NOS at the national and/or local level and many felt that there was a great need to work towards raising awareness and knowledge of osteoporosis amongst health professionals and the general public as well as fund raising to buy or contribute to the purchase of a scanner for their local hospitals (see also Communicating with health professionals). Support groups members also said that their consultants and sometimes their GP actively supported their work. After diagnosis, Rose and her consultant often spoke to the media to encourage attention and discussion about osteoporosis.
Participation in local support group activities provided people with an opportunity to talk to others about shared experiences and to learn more about the condition and its management. Pat needed mutual support, company, understanding and socialising which were all provided by her local group. Pat’s GP told her about an NOS meeting in the city and encouraged her to go. Following that, a local support group was set up and Pat became actively involved in it. Irene’s local group organised a speaker’s meeting once a month. She said that talks given by specialist doctors and nurses are always well attended.
As well as getting support themselves, a few people worked for the NOS as volunteers. One motivation for doing volunteer work was to share with others what they have learned about osteoporosis from their own personal experiences. Ann and Robert are contact persons for the NOS and as such they talk and listen to newly diagnosed people who want to talk to others with the condition.
Robert also gives regular talks to people. He said that his work with the NOS had given him an opportunity to use some of his professional skills and feel that he has a public, useful and productive role again.
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Rose and Margery had retired from active membership and hope that other members will take over and carry on with the work. Based on her experience, Margery has observed that the support group’s emphasis and priorities have changed over time and that initially a lot of the work was about lobbying and campaigning for resources and better medical awareness. She thinks that local groups perhaps tend to be stronger where NHS provisions are ‘thinner’.
Reasons for not joining
The majority of people who weren’t involved in the NOS or didn’t join their local group said that they either were not aware of it or they didn’t feel they needed that kind of support (see Information needs for people with osteoporosis).
Several newly retired, active women, who want to do the best to help themselves and halt bone deterioration, felt that the NOS was not adequately addressing their needs. Iris, who would like to talk to other women of her age group, said that she was ‘put off’ from attending a local support group after someone she met at the hospital told her that it was ‘full of old ladies’. In her many years of work for the national and local support group, Margery has noticed that the people who tend to find it difficult to engage with their work are those who ‘regard osteoporosis as associated with growing old, and looking like an old lady with a bent back’ Susannah used to belong to a local support group but she has withdrawn her membership. She thinks it is a good organisation but added ‘don’t ask me to enjoy it’. For Susannah it became depressing to talk about illness. But Irene made the point that her local group organised an array of talks and that some of them are about local history and culture and not exclusively about osteoporosis.
Several women said that they would join their local group if there were talks or other activities provided which they were interested in. Susannah would be interested to learn more about Dynamic Motion Therapy (DMT), which is a non invasive treatment developed for NASA to enable astronauts to control bone loss and muscle atrophy. She would also like to learn about the appropriateness of using power plates machines available in some health clubs. DMT/vibration therapy is a very exciting non-drug approach to bone health but more evidence is needed that it reduces risk of broken bones in people with a fragile skeleton. Others, like Chris, said that she is not interested in joining any group because osteoporosis doesn’t really affect her but she would appreciate any information they could give her.

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Last reviewed June 2017.
Last updated April 2011


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