osteoporosisnews - nikki grahame · 2016-06-12 · 4 osteoporosis news winter 2009 osteoporosis...

The magazine of the National Osteoporosis SocietyWinter 2009

OsteoporosisNEWS

Good vibrations Does vibration therapy

live up to the hype?

Social care How support services could

make your life easier

Expert advice Your health questions

answered

Nikki Grahame on living with osteoporosis

Life in the public eye

FREE WITH THIS ISSUEYour complete guide to bone-healthy Christmas cooking

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Copyright of the National Osteoporosis Society All rights reserved; no part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means – electronic, mechanical, photocopying, recording, or otherwise – without the prior written permission of the publishers. The views, opinions and policies expressed in Osteoporosis News do not necessarily reflect those of the Charity. While all reasonable efforts have been made to ensure the accuracy of the contents of this publication, no responsibility can be accepted for any error, inconsistency or omission. Products and services advertised in Osteoporosis News are also not recommended or endorsed by the Charity. Readers should exercise their own discretion and, where necessary, obtain appropriate independent advice about their suitability. Any prices quoted are for the UK only.

ContentsWinter 2009

President: HRH The Duchess of CornwallNational Osteoporosis Society is a registered Charity no. 1102712 in England and Wales and no. SCO39755 in Scotland. Registered as a company limited by guarantee in England and Wales no. 4995013

Do you want this in large print?Call 01761 473117 / 473119

0845 130 3076 www.nos.org.uk [email protected]

Features 14 Case study: Nikki Grahame Reality TV star Nikki Grahame talks

openly about how the eating disorder she battled with as a child led to a diagnosis of osteoporosis when she was 20.

16 Good vibrations Vibration therapy has plenty of admirers,

but can the claims made for the technology be believed? We talk to experts, manufacturers and users to find out more.

20 Social care Maintaining our independence is something

we all hold dear, but for the older person and those who are disabled, additional support may be required to enable people to continue to live safely and independently in their own home. We look at the options available.

Regulars

4 Letters

6 Medical News

8 National Osteoporosis Society News

11 Q&A

13 Meet the health professional

22 Fundraising News

24 Regional and Country News

26 Helpline Queries

Are you reading this magazine but are not yet a National Osteoporosis Society member? For just £15 per year you can receive four issues of Osteoporosis News and keep in touch with all the latest lifestyle hints, drug developments and news about the condition. To join us today visit www.nos.org.uk or call 01761 473287.

Dear MemberHello and welcome to the Winter issue of Osteoporosis News. These are exciting times for the National Osteoporosis Society. As we approach the end of another busy twelve months, I am delighted to say we have done a great deal of work towards our vision of a future without fragility fractures. One of our most important roles is to improve public awareness and understanding of osteoporosis. During October we were able to achieve this through the launch of an extremely successful awareness campaign with our Bone Factor Tour. The tour followed a nationwide dance-based competition for primary school children and featured our newest patron Craig Revel Horwood as a judge. Craig’s impromptu dance lesson with our president HRH The Duchess of Cornwall during the London leg of the tour generated television coverage and front page newspaper stories in the UK and as far afield as America and Australia. You may remember in the last issue of Osteoporosis News we asked you to send a postcard to your local politician urging them to improve osteoporosis services in your communities. I would like to say a big thank you to all of you who have taken part. We have been copied in to some of the replies that have been sent by local politicians and it is clear that many of them are now writing to health authorities to find out if local Fracture Liaison Services are being put in place. Finally, we have included a special Christmas food supplement with this issue of the magazine, packed full of delicious bone-friendly recipes for you to use over the coming festive season. May I take this opportunity to thank you for your continued support during 2009 and to wish you all a very merry Christmas and a happy New Year.

Claire Severgnini – Chief Executive

14 Nikki Grahame

16Vibration therapy

8 Bone Factor Tour

8

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Osteoporosis News Winter 2009 54 Osteoporosis News Winter 2009

Send your letters/submissions to:Dom Hall, Osteoporosis News,National Osteoporosis Society, Camerton, Bath, BA2 OPJemail: [email protected]

Have your say...Winter 2009

If you have any health-related questions raised by these letters please call our Helpline on 0845 450 0230

Getting to the bottom of things

Deadline for Spring 2010 issue: Friday 29th January 2010. Please note your letter may be edited and published. We do not provide a personal reply to all letters. Helpline will provide a reply if your question relates to osteoporosis.

Ready brekVivian Burdon writes in ‘Have your say...’ (Autumn issue) that she was particularly interested in the fact that Ready brek contains 1,200mg of calcium in 100 grams of the cereal.

I believe people’s attention should be drawn to the fact that the calcium in Ready brek is simply calcium carbonate added by the manufacturers, as Ready brek would not otherwise contain any calcium. It is the same calcium as is in Calcichew. It is the same as making real porridge and taking more of your calcium supplement at the same time.

Cereals contain very little calcium and that’s why calcium carbonate is sometimes added to them. It is not the same as eating a food that contains calcium in its natural state such as green vegetables, nuts or dairy products.

Anne BedishSurrey

Joint membershipsMany of our members are either married or in long-term relationships and many choose to both join the Charity, for which we are incredibly grateful.

For many years now we have not had a specific joint-membership category or rate. Some people have one membership under the name of Mr & Mrs Smith and some have two memberships. If the latter is the case we endeavour to only send one copy of Osteoporosis News and other information to a household. If you are receiving two sets of everything, please let the membership team know on [email protected] or 01761 473287. Also, if you would like to join your partner as a separate member of the Charity, that extra level of support will be a huge help. Please call us or join online. Thank you.

Forum thread The forum on our website is growing in popularity, with new members signing up every day for the chance to share their experiences of osteoporosis and join a thriving and supportive on-line community. Recent topics discussed include travel insurance, a natural osteoporosis treatment called Algaecal and this thread on cycling. www.nos.org.uk/forum

Topic: cycling

Hi everyone, I am 58 and have just been diagnosed with osteoporosis. I am a committed cyclist but I do try to balance this with walking and weight lifting. I would like to hear from any other cyclists out there with osteoporosis about how they have dealt with coping with the disease and their need to continue with the cycling. Posted by: Cycling granny

I confess I find the whole exercise thing totally confusing. Every doctor and ‘sufferer’ seems to have different ideas. In the meantime, I simply walk when I can and still cycle, as I feel any exercise, especially if you enjoy it, is better than none. Posted by: Karen

Hi KarenMy consultant is very supportive but I am worried I may do myself damage at yoga/pilates/tai chi lessons, so any advice on the exercises I should avoid would be very gratefully received. All the books on exercise for those with osteoporosis seem to be American and I am not keen on them. My spine is the worst with a T score of -3.5. I hope I can be like you and improve on this or is it a pipe dream?Posted by: Cycling granny

Hi Cycling granny! Welcome to the club. As far as exercise is concerned, my GP explained that the ‘best’ sort of exercise is the weight-bearing kind, i.e. when you put your body weight onto your feet. It seems that the ‘shock’ caused by each step helps your bone(s) to get stronger. So, the way I cope with this is by switching some bike-rides with jogging along the canal, or some 1-day hiking during a weekend. Keep smiling granny! Posted by: Nadiamaths

As an otherwise fit man diagnosed with osteoporosis in my early 40s (associated in my case with coeliac disease) I was interested to read that “no one had been able to get to the bottom” of what had caused keen cyclist Jason Bethell’s osteoporosis. An article published in Bicycling Magazine in 2004 highlighted the risk of osteoporosis for cyclists as a result of calcium being lost through sweating combined with their lack of weight-bearing exercise.

It would appear that anyone who is involved in prolonged exercise has a higher requirement for calcium than less active people.

It is obviously possible to be very fit and still suffer from low bone density. I believe that studies have shown that the most effective exercise for building denser bones is weight training. Like Jason, I run regularly. However, to strengthen my upper body I also work out with weights a couple of times a week.

It would be good to see more information in Osteoporosis News about the benefits (and specific nutrition requirements) of different types of exercise.

Dave HoganSheffield

Editor’s reply:We are currently reviewing the charity’s exercise publications. If you have requests or comments on the literature we provide, do let me know. In terms of your other points, our nurses have passed on the following: “The UK guidelines for dietary calcium requirements set a level of 700mg daily as adequate to maximise bone health. Those with osteoporosis taking drug treatments may require 1000–1200mg daily and are often prescribed supplements with their drugs.”

Taking CalcichewI was very interested to read in a recent edition of Osteoporosis News a letter saying that Calcichew D3 tablets should not be taken for 2 hours after an alendronic acid tablet.

Checking the instructions on Calcichew, I found that this was correct. I was surprised at this, because the instructions on my alendronic acid tablets say that calcium tablets should not be taken for 30 minutes after taking the alendronic acid tablet. This may confuse many people; it certainly confused me. Because these two tablets are so frequently taken in tandem, it would be useful if the manufacturers could relate the two sets of instructions to each other.

Reading further in the Calcichew instructions, I found that wholegrain cereals containing high amounts of oxalic and phytic acid should not be taken within two hours of taking a Calcichew tablet. I asked my chemist which cereals this would apply to. He had never heard of this before, and said, “Oh, I would forget about that,” in a tone of voice implying ‘just ignore it’.

I would rather not just ignore it. Can anyone clarify which cereals exactly should not be taken within 2 hours of Calcichew? Google is not much help in this matter because no one explains what is meant by ‘a high amount’. Until I am sure of the facts, I am allowing a gap of 2 hours between my breakfast Weetabix and Calcichew.

The Calcichew instructions also state that spinach and rhubarb should not be eaten within 2 hours of Calcichew. Some websites say the acid in these is completely negligible, and that in rhubarb the acid only occurs in the leaves and the stalks do no harm at all. However, it is simply too awkward to remember to delay taking the tablets on certain days when one has chanced to eat these foods, so altering one’s routine times of tablet taking. To be on the safe side, I have dug up and put on the compost heap all my rhubarb and spinach plants, even though this deprives me of a source of free, nutritious food.

Can someone who really knows, clarify what users of Calcichew should or should not be eating within 2 hours of taking the tablets? Perhaps the manufacturers of Calcichew would like to intervene at this point with a clear and thorough explanation.

Judith EverettOrpington

Nurses reply:It is confusing with so many products and health professionals giving different instructions! Unfortunately there isn’t a straightforward answer to this and there is some uncertainty as to exactly what the optimum time is to take your supplement. However, with the amounts you are getting in your supplement, you can be confident you will be getting enough for your bone health even if foods do have some effect on absorption. On the day you take your bisphosphonates, it might be sensible to take your supplement after lunch or after supper – or, as some doctors suggest, you could leave it out altogether if you prefer- just to make absolutely sure there is no effect on the bisphosphonate absorption. However, the companies that make bisphosphonates are not that strict with their instructions so it probably isn’t crucial.

Fair rations for allI was diagnosed with osteoporosis following a fractured spine and ribs. My husband also has osteoporosis. Bearing in mind that we were both young children during the Second World War and on restricted diets I wonder if this has caused our problems?

All our married life we have eaten sensibly and walked for miles. I wonder if any studies have been carried out on the effect of our war years diet. We are told how healthy they were, but the lack of proteins and calcium in growing children must have had an effect.

Eileen WatsonDevon

Nurse’s reply:Survivors of concentration camps did appear to have lower bone density but there haven’t been conclusive studies showing whether restricted diets, generally, during World War 2 affected bone density or increased fracture risks.



NEWSMEDICAL

Keeping up to date with the latest developments in the way in which medical research is funded is a top priority for our research team, so during the summer Claire Bowring, Medical Policy Officer, and Julie Udell, a National Osteoporosis Society funded PhD student, attended a Westminster reception of the All Party Parliamentary Group on Medical Research.

The Group is a forum and network for Parliamentarians with an interest in medical research which is supported by the AMRC, Academy of Medical Sciences, Medical Research Council (MRC), Cancer Research UK and the Wellcome Trust.

The event was hosted by Dr Evan Harris MP and showcased the UK’s excellent medical research base, including the significant contribution made by medical research charities.

At the event, which was chaired by Lord Turnberg, guests heard about the challenges patients, researchers and funders face – especially given the current economic situation in the UK. Over 60 Association of Medical Research Charities (AMRC) were represented on the day, including the National Osteoporosis Society. Researchers, patients and funders had the opportunity to discuss some of the key issues of medical research with over 40 MPs and peers.

Speaking at the event were a number of leading figures in the medical research arena: including Sir Leszek Borysiewicz, Chief Executive, Medical Research Council; Professor Sir John Bell, President of the Academy of Medical Sciences; and Harpal Kumar, Chief Executive of Cancer Research UK.

Simon Denegri, Chief Executive of AMRC said: “Medical research charities are the grass roots movement of science in the UK: generating public support for, and donations to, research; supporting the work of researchers and research institutions locally; and educating and informing constituents about new developments in science and what it means for them and their families.”

Research: what do you think?From the 25th November 2009 until the 6th January

2010 we will be seeking comments from health professional and the public on our new research strategy.

For more information and to get involved please go to www.nos.org.uk/research, email [email protected] or call 01761 471771. n

New study on vegetarian diet and bone healthPeople who live on vegetarian diets have lower bone density than their meat-eating counterparts, new research has suggested.

A joint Australian-Vietnamese study of links between the bones and diet of more than 2,700 people found that vegetarians had bones 5 per cent less dense than meat-eaters.

The issue was most pronounced in vegans, who excluded all animal products from their diet and whose bones were 6 per cent weaker, lead researcher Tuan Nguyen said.

There was ‘practically no difference’ between the bones of meat-eaters and ovolactovegetarians, who excluded meat and seafood but ate eggs and dairy products, he said.

“The results suggest that vegetarian diets, particularly vegan diets, are associated with lower bone mineral density,” Nguyen wrote in the study, which was published in the American Journal of Clinical Nutrition and widely reported in the media.”

Nguyen said he believed the research had been misrepresented in some media coverage. “The magnitude of the association is actually clinically insignificant.”

Effects of cannabis on bone health varies with ageResearchers investigating the effects of cannabis on bone health have found its impact varies dramatically with age.

The study found that, while cannabis may reduce bone strength in the young, it could protect against osteoporosis in later life.

When the type 1 cannabinoid receptor (CB1) comes into contact with cannabis, it has an impact on bone regeneration.

Researchers, funded by the Arthritis Research Campaign, investigated this using mice which lacked the CB1 receptor. The scientists then used compounds – similar to those in cannabis – that activated the CB1 receptor.

They found that compounds increased the rate at which bone tissue was destroyed in the young. Despite this, the study also showed that the same compounds decreased bone loss in older mice and prevented the accumulation of fat in the bones, which is known to occur in humans with osteoporosis.

Professor Stuart Ralston, who led the study, said: “This is an exciting step forward, but we must recognise that these are early results and more tests are needed on the effects of cannabis in humans to determine how the effects differ with age in people.”

Generic substitutionProposals by the government to introduce the generic substitution of drugs, previously scheduled for January 2010, will be delayed until after a public consultation has been carried out, the Department of Health has announced.

Generic (unbranded) drugs are already widely used in the NHS, but under the proposals, pharmacists will provide patients with a generic version of a drug when a branded one may have been prescribed by their doctor. To ensure that a branded drug is prescribed, a doctor must tick a special box on the prescription form which has lead to concern amongst health professional and patient bodies.

While the introduction of generic substitution will not reduce the effectiveness of the medications people receive, there may be other implications. For example, it may be confusing to unexpectedly be given drugs in different packaging and the pills themselves may look different. There are also concerns about the impact of generic substitution on the doctor-patient relationship.

Drugs can be produced generically once a patent has expired, meaning that any company can produce them. This does not result in the drugs being less effective, but means that they become much cheaper as they are no longer produced by just one company. The Department of Health has estimated the generic substitution of drugs would save the NHS £40m every year.

The National Osteoporosis Society will respond to the formal consultation, reflecting the views of our members. If you would like more information or an opportunity to share your views, please contact Anne Thurston [email protected].

RESEARCH UPDATE:

Can green tea help build strong bones?

Although we are probably more used to good old tea bags in the UK, researchers in Hong Kong have reported new scientific evidence which shows green tea may help to improve bone health.

The researchers found that green tea, a drink which is becoming increasingly popular in the West and the UK, contains a group of chemicals that can stimulate bone formation and help slow its breakdown.

The scientists exposed a group of cultured bone-forming cells (osteoblasts) to three major green tea components – epigallocatechin (EGC), gallocatechin (GC), and gallocatechin gallate (GCG) – for several days.

They found that one in particular, EGC, boosted the activity of a key enzyme that promotes bone growth by up to 79 per cent. EGC also significantly boosted levels of bone mineralisation in the cells, which strengthens bones.

The scientists also showed that high concentrations of EGC blocked the activity of a type of cell (osteoclast) that breaks down or weakens bones.

Green tea has long been linked with health benefits including preventing cancer, heart disease, and other conditions.

Dr Helen Macdonald, Senior Lecturer in Nutrition and Translational Musculoskeletal Science at the University of Aberdeen, who chairs the Charity’s Nutrition and Lifestyle advisory forum, said the results of the study were ‘interesting’.

“The results are interesting and point to a potential mechanism to explain why green tea might be good for bone health. However, it is only supportive evidence, which is very different from proving that green tea might be effective in preventing osteoporosis in people,” she said.

Macdonald added: “We do not know whether the concentrations used in this study actually reach the bone cells in living humans and whether human bone cells behave in the same way as the cellular models. So if you are a green-tea drinker it may be beneficial for your bones – but there is currently no evidence to show that the effect is large enough to overcome other risk factors for osteoporosis and it would be unwise to rely on green tea as a treatment.”

Julie Udell and Claire Bowring attending the Westminster reception.

Vitamin D may help prevent fallsTaking vitamin D supplements, at a dose of 700–1,000 international units per day, may make falling 19 per cent less likely for people aged 65 and older, a new research review recently published in the British Medical Journal has claimed

The review is based on eight studies of people aged sixty-five and older who took vitamin D supplements or placebos. Doses of vitamin D differed among the studies and participants lived in nursing homes or in their own homes.

The reduction in fall risk was only seen in people who took at least 700 international units (IU) per day of vitamin D. Taking smaller doses didn’t appear to help, the study found.

The reviewers, who included Heike Bischoff-Ferrari, MD, MPH, director of the Centre on Ageing and Mobility at Switzerland’s University Hospital Zurich, also noticed that the reduction in fall risk was only seen in people who achieved a vitamin D blood level of at least 60 nanomoles per litre.

Vitamin D affects muscle strength, and stronger muscles could mean less likelihood of falling, note Bischoff-Ferrari and colleagues.

The reviewers aren’t ruling out the possibility that higher doses of vitamin D supplementation might be even more effective at preventing falls. But the studies they reviewed didn’t include doses higher than 1,000 IU per day.

Taking too much vitamin D can cause nausea, constipation, confusion, abnormal heart rhythm, and kidney stones.

“The article by Heike Bischoff-Ferrari and colleagues published in the British Medical Journal has received mixed reviews,” said Dr Helen Macdonald, Senior Lecturer in Nutrition and Translational Musculoskeletal Science at the University of Aberdeen.

Macdonald said the study had been criticised by other researchers with regard to how the authors chose the final eight studies to be included in their meta-analysis and why they ignored others.

“If they were to include these other ‘non-positive’ studies the final answer would have been different,” Macdonald said.

But she added that the study also raised some concerns. “This meta-analysis shows that a daily dose of vitamin D of

between 700 to 1000 IU reduces risk of falling by 19 per cent. It is another reason to be concerned about vulnerable groups that are vitamin D-deficient,” she said. However, it’s early days and more conclusive research is needed before people start to change the amount of vitamin D they are currently taking.


Losing someone close to you can be a shattering experience at any time of the year but the Christmas season, traditionally a time of celebration, can be a particularly poignant time for so many. We often think with sadness about those whom we have lost. The National Osteoporosis Society is pleased to announce the launch of its Star Appeal and is inviting people to remember a loved one this Christmas by naming a star on their Christmas tree.

If you or your friends want to remember someone special this Christmas you can do so by supporting

the Star Appeal. Contact us now for a copy of the Star Appeal pack and we will send you a special star that can be dedicated in memory of your loved one. On the back of the star is space for a comment, memory or photo of your loved one.

Once this has been returned to the National Osteoporosis Society office in the freepost envelope provided, we will place this on a Christmas tree located outside the office and will be on display for the duration of the festive season.

If you would like to celebrate the life of someone special, please contact the National Osteoporosis Society on 01761 473137 or visit www.nos.org.uk/starappeal for more information.

President and patron Cha cha cha charity onto front pagesWhen our newest Patron Craig Revel Horwood gave our president Her Royal Highness The Duchess of Cornwall an impromptu dance lesson in front of TV cameras, press photographers and journalists covering events taking place to mark World Osteoporosis Day, we knew the National Osteoporosis Society would feature in some headlines the next day.And feature we did. Footage of Craig and Her Royal Highness dancing graced the morning television news, featured on the front page of the Daily Express and generated headlines in several other national UK papers. It even featured on TV news programmes in New York and Australia.

The fantastic coverage came about through our Bone Factor Tour, part of our Bones 4 Life campaign, which was launched after a national competition to teach children about the importance of dance, weight-bearing exercise and a balanced,

calcium-rich diet to help build stronger bones. Schools from across the UK entered an original dance routine to

win a fun day all about bone health, including learning some slick moves from the dance judge.

Her Royal Highness joined Craig Revel Horwood on the London leg of the tour at St Clement Danes Primary School to welcome him as the Charity’s newest patron and to observe the outstanding work that the school has been doing towards better bone health.

During her visit to the school, Her Royal Highness saw first-hand the benefits of her 2007 call for younger people to be better educated about the ‘mega importance’ of both a healthy diet and regular exercise to maintain healthy bones.

As recognition of their ongoing work, Her Royal Highness presented St Clement Danes School with a certificate which she had personally signed.

Craig Revel Horwood said the day had been great fun. “Dance is a great way to keep fit, have fun and look after your bones. It’s great to see so many children building stronger bones!”

Claire Severgnini, Chief Executive of the National Osteoporosis Society, said the Bone Factor Tour gave the Charity an opportunity to take bone health messages directly into primary schools.

“This is a vital age to act to prevent the devastating consequences of osteoporosis in later life, and through fun, educational activities we can really make a difference. The recognition of the importance of this work from our President, Her Royal Highness The Duchess of Cornwall, and the support from our new patron, Craig Revel Horwood, highlights the value of these preventative steps.”

Craig and the Bone Factor Tour visited four schools during the week of World Osteoporosis Day including Eastburn Junior & Infant School in West Yorkshire, Llanfair Primary School in the Vale of Glamorgan, Maryland Primary in Stratford and London and St Louis Middle School in Bury St Edmunds, Suffolk. www.bones4life.org

8 Osteoporosis News Winter 2009 Osteoporosis News Winter 2009 9

Members’ surveyEarlier in the year we sent out a brief survey with the Summer issue of Osteoporosis News, asking you some questions about our membership scheme and what you think of this magazine. First of all, we’d like to say thanks to everyone who took the time to complete the survey. We received a fantastic response, strong enough to get a good idea of what you all really think.

Almost 4,000 of you took part in the survey and we’re pleased to say the results collected will allow us to take on board your feedback about subjects ranging from your satisfaction with membership services and fees to your reasons for joining and staying with the National Osteoporosis Society and, of course, your feedback on Osteoporosis News.

The good news is that you appear to be very satisfied with the service you are getting. In terms of joining, renewing and responses to enquiries, in all three instances, more than 90 per cent expressed satisfaction to some degree and in each case over half of respondents said they were ‘very satisfied.’

Additionally, most felt that membership represented value for money; around a quarter thought it ‘excellent value for money’ with a further quarter agreeing it was ‘good value for money’.

In terms of Osteoporosis News, it’s great to hear that so many of you enjoy reading the magazine, with 62 per cent of you rating our content very good and a further 33 per cent rating it quite good.

The survey also told us there are some sections of the magazine you prefer to others, with our Medical News, Letters, Q&A and Helpline pages proving popular while In My Opinion and sections specifically concerning the work and activities of the Charity were less popular.

Finally, we also asked you about our website. Unfortunately, only 20 per cent of our respondents have visited our website, even though 55 per cent of respondents are regular internet users. The better news, is that, of those people who have visited the site, a whopping 92 per cent said it was easy to use.

So, what next? We’ve digested the feedback you’ve given us; now we have to act on the information and make some changes.

Another aspect that came from the survey was how many people were prompted to join the society via their doctor or consultant. This will give further impetus to our plans to reach people as soon as possible: what we call, ‘at point of diagnosis’.

In terms of Osteoporosis News, we’ve taken the feedback on board and are looking at the structure of the magazine and how we can improve it to make it an even more essential read. If you have any additional suggestions about articles or features you would specifically like to see, please get in touch with the editor of the magazine, Dom Hall, on 01761 473148 or by email at [email protected]

Members have their voices heard on NHS ChoicesThe National Osteoporosis Society has been offered the chance to take part in an update of a government health advice service – thanks to our members having their say!In September, we ran a survey via our Members E-Forum to ask for views on the osteoporosis information available through NHS Choices (www.nhs.uk). After hearing the feedback, the UK Department of Health are keen to involve us in improving the site.

This just goes to show how important the views of our members are in bringing about improvements in osteoporosis services. n

Fighting for Fracture Liaison Services campaignNational Osteoporosis Society Patron Lynn Faulds Wood and her husband John Stapleton put their weight behind our Fighting for Fracture Liaison Services campaign recently. The two sent postcards to their MP calling for improved follow up services for people who have broken bones because of osteoporosis.In the last issue of Osteoporosis News we included postcards for members to send to their elected MP and call for politicians to force their local health services to implement guidelines that could prevent unnecessary deaths as a result of fragility fractures.

Lynn Faulds Wood said she knew from her own experience how important fracture follow-up services can be.

“When I broke my arm last year I had great NHS care at my local hospital – the West Middlesex University Hospital – including excellent fracture follow-up at my local hospital and, being female, slim and likely to develop osteoporosis, I’m now on regular medication to keep my bones healthy. Many hospitals don’t see fracture follow-up services as a priority whilst others don’t have the funding; this will cost the country dearly in the long run and cause unnecessary pain and disability to many people who are not warned they will develop osteoporosis,” she said.

If you haven’t sent a postcard, but would like to post a message to your local politician, it’s not too late to get involved. You can do either of the following:• Visit www.nos.org.uk/postcards. From here, you can

download template letters to send to your local politician and/or health authority.

• Get in touch directly on 0845 1303076 or email [email protected].

Members’ Day 2010Next year our 2010 Members’ Day and AGM event heads to Scotland for the first time and will take place in a Glasgow city centre venue on Saturday 26th June.

As usual we are working hard to make sure the event will be an unmissable date for your diary and, as has been the case over the past two years, will be free of charge to current members, but advance booking is essential. If you would like a booking form please visit our website at www.nos.org.uk, call 01761 473281 or look out for the special insert in our Spring 2010 issue.

“We are committed to keeping our popular annual Members’ Day and AGM on the move each year, reaching members in all parts of the UK, so we’re absolutely delighted to be able to bring the event to Scotland in 2010. We really hope that this will mean that National Osteoporosis Society members who have been unable to travel to previous events will be able to join us this time,” National Osteoporosis Society Events Manager Sarah Phillips said.

NEWS

Remember someone special with a Christmas star



Q&AWhen did you first find out you had osteoporosis?Following a scan arranged by my GP through the hospital in 1996. I had broken a hip in November 1995 when I was just 40-years-old. In 1996 I twisted on the ball of my left leg to put my key in the car door. The pain was immense. I couldn’t get up, and the ambulance took me to the local hospital where the next day it was operated on. I had 3 pins inserted. Prior to discharge a nurse advised me to ask my GP for a bone density scan – as I could have osteoporosis. I just thought I would never remember the name of the condition!

What was your first reaction?I had a busy job working for central trains and at the weekends was a Territorial Army Infantry Soldier. I’d march for hours carrying heavy loads and was fit – I hadn’t had so much as a cold for

years. I had the scan seven months after the break. I was told my bone density was low in my wrist and spine. I felt shocked and frightened.

I was given a leaflet about the National Osteoporosis

Society by the radiographer and I rang about local monthly meetings. These meetings were very important to me. They covered exercise, diet and medication, support and friendship. Not everyone there had osteoporosis like me, some had it as a secondary condition and quite a few were older than me.

Do you take any medication?The medication prescribed was cyclical etidronate (Didronel PMO), hormone replacement therapy (HRT), calcium and vitamin D in the winter months. I still took pain relief and was on crutches. I was told the other hip could break as the bone was thin. The consultant also arranged to scan my daughter. She too was osteopenic at 26 years of age!

How effective is your treatment?I have taken bisphosphonates for the last nine years. However, my bone thickness and strength hasn’t been as good of late, and I also suffered musculoskeletal aches, spasms and migraines. Years of taking Ibuprofen has upset my stomach, so now I take strontium ranelate (Protelos), HRT, calcium and vitamin D3 all year round. I no longer have the spasms or migraines and hardly need to take the pain relief. It’s too early to see if it is working effectively but I do feel lots better and am more active.

Have you changed your diet?I haven’t altered my diet too much. I do drink milk or have a yogurt daily, and eat white meat and eggs but am finding it difficult to digest oily fish.

Do you do any exercise? If so, what do you find most effective?I do walk and am careful on wet or icy days not to slip. I also try to keep my weight at a reasonable level. I play an exercise video occasionally. They are interesting when done to music. When I was less mobile I went to extend classes.

Do you know anyone else with osteoporosis?I still attend the Sutton Coldfield Support Group meetings and they are all my friends. We are all learning and supporting each other all the time.

If you could do one thing to change the way osteoporosis is dealt with in the UK, what would it be?I think it’s very important that osteoporosis is kept in the public eye and that money is raised for research. Information about the condition is also very important; it helped me to try and understand it and not be as frightened.

What advice would you give to someone who has been newly diagnosed?Find out what you can about osteoporosis and join the National Osteoporosis Society. If you can find out why you have it, then you can work positively to try and turn it around. n

Sandra Massey was a fit 40-year-old, working for a train company and taking part in Territorial Army activities at weekends, when a fracture changed her life forever. She tells Osteoporosis News about facing the future living with the condition.

“I think it’s very important that osteoporosis is kept in the public eye and that money is raised for research.”


Osteoporosis News Winter 2009 13

MEETTHE HEALTH PROFESSIONALDebbie Stone Specialist Osteoporosis Nurse

What do you do?I have been employed as a Specialist Osteoporosis Nurse for 7 years.

Where do you work? The Integrated Osteoporosis Service is based in Bronglais Hospital, Aberystwyth, Ceredigion, and is part of the Hywel Dda Health Board.

What is your main role? Our osteoporosis service is unique in the UK and was set up by a Consultant Physician, Dr Phil Jones, and myself in 2002. The service covers a large rural community in Mid Wales and is specifically targeted at reducing the number of broken bones (due to osteoporosis) in three high-risk groups: frail, elderly people who live in Care Homes; people who take steroid tablets long-term; and those people who attend Bronglais Hospital having fractured (broken) a bone through a simple knock or fall (a ‘Fracture Liaison Service’).

Patients are seen in my Nurse Led Clinics across the locality, within a variety of diverse settings, including: GP Surgeries, Residential and Nursing Homes, patients’ own homes, Community Hospitals and Bronglais General Hospital. We also hold General Osteoporosis Clinics for those with more complex needs.

How do you help people with osteoporosis? I guide patients through their diagnosis of osteoporosis, including explanation of their DXA scan results and the subsequent management of this condition.

Patients value being able to contact a health professional who is readily accessible and can give them specific advice – we therefore provide patients with our direct phone number. Health

professionals, including GPs, also phone us for advice. I organise educational sessions on osteoporosis for patients and families, the public, Social Services and health personnel. I am also privileged to be the Secretary to the Ceredigion National Osteoporosis Society Support Group that provides information and support to those affected by osteoporosis and enjoys lively monthly meetings with excellent speakers. Being Secretary gives me the opportunity to update members on the latest developments in the management of osteoporosis and their feedback promotes patient involvement in service development.

How has treatment for people with osteoporosis improved over the past 10 years? The wider range of treatments available means that we should be able to fit the most appropriate treatment to the patient and not vice versa!

What’s the biggest obstacle for you in terms of helping people with osteoporosis? It remains a major challenge to change both public and professionals’ attitudes about the management of fracture risk. It is evident that many people still mistakenly believe that fractures are an inevitable part of the ageing process and that little can be done to reduce that risk.

How can Fracture Liaison Services help? These services are often delivered by nurses such as myself to ensure that patients who have sustained fractures are systematically assessed for osteoporosis and are offered a management plan to reduce their risk of further fractures. This may include lifestyle advice and support with taking medication. n

Anyone with osteoporosis will be in regular contact with a whole range of health professionals. But what do the people based in hospitals and clinics really do on a day-to-day basis? In the first of a new regular series of interviews, Osteoporosis News talks to Debbie Stone, a Specialist Osteoporosis Nurse based in Aberystwyth.

“We should be able to fit the

most appropriate treatment to the patient and not

vice versa!”


Even from an early age, Nikki was warned that she might develop osteoporosis.


In most ways Nikki Grahame is like any other 27-year-old in the glare of the public eye. Pretty, bright and bubbly

and devoting her time to promoting her autobiography Dying to be Thin, Nikki’s busy life heads along in a whirl of TV show appearances, openings and parties.

But in other ways, life for Nikki is very different, mainly because she’s living with osteoporosis and is constantly aware of the risk of fracturing bones.

“I was at the gym recently and really banged my hip. I was so worried that I’d done some serious damage but thankfully, I was all right,” she says. “It’s such a big worry – if I have any sort of knock or bang, I stop and think, ‘Is that actually going to be okay?’”

Breaking bones at the gym isn’t the kind of thing most people of Nikki’s age have to worry about, so what makes the TV presenter, magazine columnist and celebrity have to be so careful?

The answer lies in her past. When Nikki was young her parents separated and her distress at the time was further compounded by the death of her beloved grandfather.

Sadly, at a time when she was already feeling hurt and rejected, a fellow gymnast at the classes Nikki was attending told her that she looked fat in her leotard. This comment stuck with Nikki and together with the sadness she already felt, at eight years of age, she developed the eating disorder, anorexia nervosa.

Between the ages of eight and nineteen, Nikki spent much of her life in hospitals and institutions, and at one point her weight dropped so much that she slipped into a coma.

Even from an early age, Nikki was warned that she might develop osteoporosis.

“When I was 11, I was told that it might happen but at the time I didn’t give it a second thought. In all honesty, osteoporosis was the least of my worries – I was just completely intent on making myself thin.”

Nikki remembers a conversation she had a couple of years later with a Junior Registrar at Great Ormond Street Hospital, who showed her two chocolate bars.

“She took out a Wispa bar and explained that the insides of bones should have tiny holes, just

like the inside of a Wispa. Then she showed me an Aero which has much bigger holes and explained that this is what osteoporosis looks like.”Nikki was sent for her first bone density scan at the age of 15 and was told that her bone density was lower than average for her age, but she was so focused on losing more weight that it didn’t worry her.

“I didn’t really care. I knew that what I was doing was stunting my growth and meant that I wasn’t ovulating, but at that point, all that I cared about was starving myself to death.”

When Nikki was 20 she was given the news that she had acute osteoporosis in her spine and osteoporosis in her hips.

She was treated with oestrogen replacement drugs but these made her feel extremely unwell and tearful, so she went back to her doctor and they decided that she should stop taking them. She now takes calcium and vitamin D supplements twice a day.

Over the last five years, Nikki has cracked ribs on a regular basis. “If someone hugs me too hard, my ribs will crack. They do heal but it is really uncomfortable,” she says.

She also fractured a finger when she was driving and had to make an emergency stop.

Nikki says she is aware of the importance diet can play in helping to build strong bones and now lives a very healthy lifestyle. She tells us that she makes sure she eats at least three portions of calcium-rich food every day.

“I drink half a pint of milk a day, have a yogurt and some sort of dark green vegetable, like broccoli to keep my calcium levels topped up. I also go to the gym regularly because I know how important weight-bearing exercise is for my bones.”

Nikki has a sobering message for any young people thinking that it’s more important to be thin than healthy:

“You should think about the long-term damage that you’re doing. There is a lot of pressure nowadays to be size zero, but the damage you’re doing is irreparable. It really is such a huge deal.”

“You can’t take back what you’ve done to your bones and your internal organs; you can put weight back on but you may never reverse the damage you’ve done to your bones.” n

“You can’t take back what

you’ve done to your bones

and your internal

organs; you can put

weight back on but you may never reverse the

damage you’ve done to your bones.”

Nikki’s book Dying to be Thin.

CASE STUDY

Reality of osteoporosis

Nikki Grahame shot to fame in 2006 in the reality television show, Big Brother 7. Since then, she has spoken openly about her 11-year battle with anorexia, and her subsequent diagnosis with osteoporosis. Siobhan Hallmark talks to her about her past, present and future.


Perhaps unsurprisingly, according to the companies which manufacture vibration therapy platforms such as Power Plate International and Juvent, there are a number of studies which highlight the benefits of vibration training.

A spokeswoman for one manufacturer – Power Plate – refers to a study published in Osteoporosis International in 2007 which concludes: “This preliminary data suggests that whole body vibration (WBV) does not affect bone resorption but may lead to an increase in bone formation.”

The spokeswoman also refers to another study, published in the Journal of Bone and Mineral Research in 2004, which says “these findings suggest that WBV training may be a feasible and effective way to modify well-recognised risk factors for falls and fractures in older women.”

ScepticalDespite such studies, others have remained sceptical over the benefits of vibration therapy. Dr Eugene McCloskey, Reader in Adult Bone Disease at the University of Sheffield, tells Osteoporosis News that “theoretically, the use of vibration platforms is of some attraction for the management of osteoporosis,” but adds “it is one thing to say that something is theoretically attractive and another to advocate its use when the evidence has several limitations.”

“These limitations relate to the study design and outcomes” Dr McCloskey says, “for example, DXA is widely used as a study outcome but is probably not the appropriate method to assess any bone response; the optimal dose of the vibration is not known; there is virtually no data on its tolerability in higher-risk women; there is no evidence on how the effect, if any, persists once the course is finished and there is no data on fracture prevention. There may also be potential risks.”

For Kate Ward, a Senior Research Scientist at the MRC Collaborative Centre for Human Nutrition Research in Cambridge, it is important to consider the different types of vibration therapy available.

“The results of the studies cannot be assumed to be applied to all of the plates available,” says Ward. “There are few studies to date which have shown positive effects of vibration, specifically in patients with osteoporosis. In adults, there have been two trials which showed increased bone density of the hip. Some of the plates have been shown to improve muscle function which might help to prevent falls in patients with osteoporosis and be an alternative way of exercising which may be of benefit to patients,” she says.

But what of the risks associated with vibration therapy? For the vibrating platform manufacturers, these risks are similar to those associated with other forms of exercise.

Specifically, when used in people with low bone density or osteoporosis, vibration training would appear to pose significantly lower risks due to the largely static nature of the exercise and controlled environment; however users must be cautious and not use without taking professional advice. Power Plate, however, suggest that it should not be used in people with a T-score of -4 or lower,” a Power Plate spokeswoman said.

RisksBut for others, the risks pose a greater threat. Dr Eugene McCloskey points to a ‘potential association’ between long-term exposure to Whole Body Vibration (WBV) and chronic lower back pain.

“Many of the studies of WBV have been conducted in relatively healthy volunteers and any lack of safety concerns in this context does not exclude the potential for long-term side effects in more elderly and frail individuals,” Dr McCloskey says. “For this reason, it would still be best to assess the long-term safety of WBV training in older women and this requires further research.”

For the meantime, vibration therapy is likely to be something we continue to hear

more about. The big question for readers of Osteoporosis News is whether or not it’s worth a try. Michael Moroney, Managing Director of Medivibes, a company which distributes the Juvent Dynamic Motion Therapy vibrating platform, believes it is.

“Many international clinical research studies have demonstrated that the safe and gentle Juvent DMT signal is effective: It is the only medical device specifically developed to treat and prevent osteoporosis and, as such, is approved in over 30 countries around the world.”

CautiousBut other people interviewed by Osteoporosis News were more cautious.

“Before commencing any type of therapy you should speak to your GP, consultant or osteoporosis nurse,” says Kate Ward. “The list of conditions with which it is advisable not to use the plates, should be consulted. For example, it is recommended by the Power Plate manufacturers that sufferers of severe osteoporosis should not use the plate,” she says.

“Considering the risks, patients with osteoporosis should not be recommended to buy or try vibration platforms at present,” says Dr McCloskey. “Of course, exercise is good, and it may be that they would wish to try the treatment, but this should only be undertaken under the direct supervision of a qualified person, for example, in a gym. Before we can more widely recommend such treatments we not only have to prove they are beneficial but we also have to quantify that benefit and any safety concerns. This will require a fairly thorough programme of research in the coming years.”

For more information, please ask us for a copy of our new information leaflet Vibration therapy and osteoporosis by calling 0845 130 3076 or by visiting our website at www.nos.org.uk >>


If you’ve looked at an advert for a vibration plate or seen one at your local gym, you could be forgiven

for thinking that vibration therapy is a new invention. The truth is, scientists have been looking into the potential benefits of vibration for a long time, with the first machines appearing over 150 years ago.

Back in 1857 a Swedish doctor, Gustav Zander, built the earliest incarnation of a vibrating machine which he proudly exhibited at two World Fairs and installed in his Zander Institutes, an early form of modern health clubs. Later, in Michigan USA, Dr John Harvey Kellogg – who we also have to thank for the invention of the humble Cornflake – developed the first whole body vibration machine.

Much later, in the 1960s, Russian scientists began looking at vibration therapy in cosmonauts returning to earth, with the aim of reversing muscle and bone loss that has occurred due to the weightlessness of space.

Today, vibration therapy is used far more widely and has provoked a great deal of interest, especially because of the claims that are made of a possible benefit on bone density. But do these claims have any substance?

Vibration therapy has attracted a great deal of interest recently, mainly because of the claims that are made of a possible benefit on bone density, but do these claims have any substance? Dom Hall looks at both sides of the story.

Dr Eugene McCloskey, Reader in Adult Bone Disease at the University of Sheffield.

“ It is one thing to say that something is theoretically attractive and another to advocate its use when the evidence has several limitations.”

Good

vibrations

GoodGoodvibrationsGoodvibrations



Vibrating plates do not all work in the same way. The vibrations generated by the platform are transmitted to the person standing, sitting or lying on the machine and the intensity and the direction of these vibrations are essential for their effect. There are two distinct types of machine on the market:

How does vibration therapy work?

Whole Body Vibration (Power Plate, Galileo, etc)This vibration technique induces fast but short stretches and contractions in muscles and tendon fibres causing increases in muscle power and strength. The vibrations are transmitted via a platform on which the person usually stands. The vibration is of reasonably high magnitude and frequency and when combined with a programme of exercises it has been found to improve muscle power. As this is its primary aim, these types of vibrating plates are often found in gyms and fitness centres. In the elderly, many broken bones are caused by falls and the risk of falling may be lowered by improving muscle strength. The increased muscle and ligament strength also places the skeleton under greater stress and bone responds to this by becoming stronger. In summary, WBV aims to increase muscle strength with an additional beneficial effect on bone.

Dynamic Motion Therapy (e.g. Juvent 1000)Dynamic Motion Therapy (DMT) is based on the premise that some of our muscle fibres twitch or operate at a very rapid rate, even when we’re standing still. This rapid muscle action helps us to maintain our upright posture and assists in blood flow return to the heart. These low-force muscle activities are also thought to encourage bone growth and strength. It is recognised that these particular muscle fibres can deteriorate with age and the hope is that these may be restored by use of DMT. The user usually stands on a plate which emits tiny up and down vibrations. They should adopt a relaxed upright stance (without footwear) and are usually advised to undertake the exercise for 20 minutes a day, five days a week. n

Case Study Name: Mary LittleAge: 54

I was diagnosed with osteoporosis 12 years ago. I started using a Juvent vibrating plate in 2007, and used it for eight months. I had a DXA scan this August which showed that since my last scan, almost 4 years ago, I had not lost any bone density at all. I feel sure that the eight months using Juvent contributed to this stability because I would have expected to lose some density given my age and given that I had been unable to do much weight-bearing exercise. I can also say that my muscle strength improved significantly during the time I used Juvent, especially in my calves.



Inside Social Care

The Social Care system in England has undergone numerous changes and restructuring over the years and there are further changes in the pipeline. But what are the services available to you? Janet Bowman finds out.

Types of help

Home Carers: Will provide help with personal care such as getting washed and dressed, or practical assistance with tasks including preparing meals or shopping.

Meals Service: Some councils offer a hot meal delivery service or they can organise for you to receive a delivery of frozen meals which can be heated in a microwave.

Day Centres and Luncheon Clubs: Provide locally based day care and lunch with a programme of activities. Social services can often organise transport to get you to the day centre.

Equipment for Daily Living: Occupational Therapy can provide disability equipment and adaptations to your home to help you with everyday tasks. Simple equipment for help with everyday living will usually be provided free of charge following an assessment by an occupational therapist. You may have to pay or part fund the purchase of larger items of equipment yourself.

Community Emergency Alarm Service: This is a special unit connected to your telephone line which is fitted with an alarm button. It allows you to summon help quickly any time of the day or night. If you are receiving certain welfare benefits there may be a reduction in the charge for this service. Also some organisations such as the British Legion or the ex-servicemen’s charity (SAFA) may be able to offer financial assistance towards the installation of a phone alarm system. Short Break Service: Following a Carer’s assessment there are a number of different short-break schemes which may be available for you or for someone who cares for you. It can include care in the home or day care (away from home) and residential breaks.

Your questions

Maintaining our independence is something we all hold dear, but for the older person and

those who are disabled, additional support may be required to enable people to continue to live safely and independently in their own homes.

There are various support services which could be available to you or someone you care for and your local authority social services department would be the first port of call for information about service provision in your area. Social services may be able to provide some help directly or can arrange for services to be provided to you by another organisation such as a home care agency or a charity.

Getting an assessmentUnder The NHS and Community Care Act 1990 local authorities have a duty to assess people who may be in need of social care and support and also to assess disabled people. If you are finding it hard to cope with your day-to-day activities you should first contact your local social services department and request to have a community care assessment (CCA).

During your initial telephone call youmay be put through to a duty social worker or someone in a ‘first point of contact’ team (in some areas called Care Direct). You will be asked for basic information such as your name, address and the name of your GP, as well as brief details about your circumstances. Priority to have an assessment is made according to need. Some people will be seen very quickly, depending on how urgent their situation is.

The second stage of the assessment process will usually involve a home visit by a social worker who will talk to you about your situation and your individual needs. They will also decide what kind of help that you or your carer may need and whether this can be provided by social services.

Assessments, if appropriate, can also take place at a relative’s home or in hospital. Also, if you are a carer, you can ask for a separate assessment to look at any support you may need.

Once your needs have been identified, social services will then arrange for the services to be set in place for you. They may provide some services directly to meet your identified needs or arrange for you to receive direct payments.

Is everyone eligible for community care?Everyone can request to have a CCA, but not everyone will be able to receive services from social services after having an assessment. It very much depends on an individual’s level of need and circumstances.

Local authorities are required to follow guidance from the Department of Health called ‘Fair Access to Care Services’ which sets out eligibility criteria to ensure that decisions around assessment are applied fairly.

If you do not qualify for community care services, social services may be able to offer advice and information about alternative organisations that could help you.

Paying for community care services In England and Wales local authorities can charge for some community care services and charging arrangements can vary between authorities. If you have a certain level of income or savings you will be expected to contribute towards the cost of any services you receive. You will be asked to complete a financial assessment form so that social services can work out how much, if anything, you will have to pay.

In Scotland personal care is free if you are over 65 and have been assessed by the local authority social work department as needing it.

Whatever your circumstances your social services department will be able to advise you. Alternatively you can seek professional advice from organisations such as the Citizens Advice service.

Organising your own careIf you have been assessed as needing support from social services, you may be offered the option of receiving Direct Payments/Individualised Budgets. Money can be given directly to you to purchase your own care services. This offers you more flexibility and independence, so that you can arrange your care and support in a way that suits you. n

My sister is currently in hospital recovering from a hip fracture and she lives on her own at home. What sort of support can she expect when she gets home?

Before your sister is discharged from hospital a care package will be planned to meet her individual needs to ensure that she is fully supported when she leaves hospital. She may be offered intermediate care by an integrated nursing and social care team. This service may be provided in people’s own homes or in other settings such as a community hospital, or in a residential care home. Intermediate care is provided for a time-limited period (usually up to six weeks) and is free of charge. If your sister needs ongoing help after this she will be referred back to community care services to be reassessed for a more permanent package of care.

I am in my eighties and the main carer for my disabled husband. What help is available if I became unexpectedly poorly or have to go into hospital urgently?

It is always advisable to have some sort of contingency plan in place to cover emergencies. Your physical health and what would happen if you were ill would certainly be looked at as part of a ‘carer’s’ community care assessment. However, you can contact the out of hours emergency duty team at social services should you need help when the main office is closed.

Your GP may also be able to refer you to the Rapid Response team or equivalent service in your area. These teams can provide care at short notice to help people to stay in their own homes and avoid being admitted to hospital.

Age Concern EnglandTel: 0800 0099 66www.ageconcern.org.uk

Age Concern Cymru and Help the Aged in WalesTel: 029 2043 1555www.accymru.org.uk

Age Concern ScotlandTel: 0845 833 0200www.ageconcernandhelptheagedscotland.org.uk

Age Concern Northern IrelandTel: 028 9024 5729www.ageconcernni.org

The four national Age Concerns in the UK have joined together with Help the Aged to form new national charities

Carers UKTel: 020 7378 4999CarersLine Tel: 0808 808 7777www.carersuk.org

The Citizens Advice Bureau (CAB) Your local branch should be listed in your phone directory or visit www.citizensadvice.org.uk for England and Wales www.citizensadvice.co.uk for the bureau in Northern Ireland and www.cas.org.uk for Scotland.

Counsel and Care Advice line Tel: 0845 300 7585 www.counselandcare.org.uk

This article gives a general overview of community care services available in England. Service provision is similar in the other 3 UK countries but may be organised and funded slightly differently. Here are some other useful sources of advice:


22 Osteoporosis News Winter 2009

NEWSFUNDRAISING

Funding research into osteoporosis has always been an essential part of the work of the National Osteoporosis Society. We know that research is close to the hearts of many of our members and supporters, so we have devised an exciting new initiative, The Bone Builders Research Fund, to involve donors more closely in research to improve the diagnosis, treatment and services available for people with and at risk of osteoporosis. The Bone Builders Research Fund is a way for you to directly support osteoporosis research. By becoming a Bone Builder, your donations will go directly to advancing our understanding of osteoporosis and improving the care of people with the disease through innovative and ground breaking research. To enable us to fund the very best research, our ambition is to increase our annual research spend to £450,000 by 2012.

You can become a Bone Builder by signing up to one of four options, with contributions starting from as little as £25 a month.

Bone Builders will be kept up to date with our research work through a special newsletter and, depending on your level of support, will be invited to special events and given the opportunity to meet the people involved in research into osteoporosis.

We will also acknowledge the generous support of all of our Bone Builders through listings on our website and in our annual report.

Professor Roger Francis, Chair of the National Osteoporosis Society Medical Board and Research Grants Committee, said the Bone Builders scheme was vital to the development of research funding at the Charity.

“By becoming a Bone Builder you can directly help to spearhead the very best research this country has to offer and provide real hope to many thousands of people for generations to come,” he said.

To become a Bone Builder, or for further information about the Fund, please contact Joanna Ellams in the Fundraising Department on 01761 473134 or at [email protected]

Osteoporosis News Winter 2009 23

Become a Bone Builder and help shape the future of osteoporosis research

Big Bone Walk 2010: Save the Date

Not only are we able to raise money but also awareness of the vital services that the Charity runs and provide information and reassurance to people living with osteoporosis.

That is where we need your help! Do you belong to a WI or men’s club? Are you part of a local Rotary, Lions or Townswomen’s Guild? If so, would you be kind enough to introduce the National Osteoporosis Society to your group? Could your club make a one-off gift to the Charity, donate proceeds from an event or include us in your newsletter or on your website?

Alternatively, do you belong to or attend a local church? Would your church be able to donate just one collection to the National Osteoporosis

Society? Could you promote the work of the Charity in your notices, newsletter or magazine? Could your church make us the beneficiaries for one of its own events?

We would really appreciate your help by just asking your community club or society to support the Charity in any way it can. We can provide you with collections tins, text for your newsletters and websites, and information about the Charity for all your members or congregations.

Please help strengthen our roots in the community and make a real difference to people in your area by calling Holly on 01761 473103 or emailing [email protected] for more information about how you can help.

Summer Raffle 2009 Thank you to everyone who took part in our 2009 Summer Raffle. Your very kind and generous involvement helped us to raise over £52,000 which will be used to support our vital services that mean so much to people living with osteoporosis.Our congratulations go to Mrs Lloyd of New Milton, the winner of our first prize of a fantastic Caribbean Cruise for two people which has been kindly provided by P&O Cruises.

The second prize winner of £1,000 was Mrs Graham of Crickhowell. Finally, the third prize winner was Mrs Bates of Coventry who has taken delivery of a gourmet hamper.

One of the key components of the raffle is the very generous support we have received from P&O Cruises. They have supported the Charity for a number of years and, once again, donated the wonderful first prize to enable our winner to sail away to the Caribbean and relax in

The National Osteoporosis Society needs you!Successful fundraising depends on strong links with the community. Every year we receive support from local churches, Rotary Clubs, WIs and other community organisations.

this beautiful part of the world. We are extremely grateful for their continued involvement with the draw.

Your support of the raffle is invaluable and helps raise vital funds each year. If you have previously opted out of our raffles and appeals but would like to change your mind, please call us on 01761 473117 or 01761 473119. Who knows, you could be one of our winners next time.

Thank you again to everyone who purchased tickets for the draw and enabled us to carry on our work towards the diagnosis, prevention and treatment of this terrible disease. Thank you so much.

This year saw the launch of our first Go Orange for Osteoporosis day and we were thrilled with the wonderful response we received. Many thanks to everyone who went orange for the Charity. Events took place across the UK and there were some fantastic orange costumes, decorations and food produced for this day. Staff at head office did their bit with different departments competing to see

who could turn the most orange! There was an orange themed lunch for all to enjoy and an orange cake sale to help raise additional funds. We have included some of the best photos for you to enjoy!

Across the UK a wide range of activities took place including nursing staff at Sandwell Hospital dressing orange for the day, St Clements Danes school in London played oranges and lemons on hand bells and Nelson Thorne Publishing in Cheltenham completed their Go Orange day with an orange cake sale!

A number of support groups also went orange in style and combined orange costumes with their tea parties. The 9th Bath Beechen Cliff Methodist Brownies dressed up in orange, made orange biscuits and had fun dancing to Boogie for your Bones – in full orange costumes! Go Orange for Osteoporosis was a great success and we look forward to building on this in 2010.

Go orange for osteoporosis

We saw a really good response to our 2009 Big Bone Walk campaign and are really excited about the walks happening in 2010.

We would love to welcome you on one of our walks taking place in 2010 – time to save the date in your diary!

Westonbirt Arboretum, GloucestershireSaturday 5th June

Stormont Estate, Belfast Saturday 12th June

Roath Park, Cardiff Saturday 19th June

Holyrood Park, Scotland Sunday 27th June

More details to follow on our website and in the next edition of Osteoporosis News!



NEWSREGIONAL AND COUNTRY

Ceredigion Integrated Osteoporosis Service carries on ‘vital work’The Integrated Osteoporosis Service in Ceredigion, Wales, recently paid host to Welsh Assembly Member, Joyce Watson.Joyce decided to take a look for herself at how the service works after it was highlighted during the summer launch of our Protecting fragile bones manifesto in Cardiff.

Ms Watson said the service did ‘vital work’ which others could learn from.

“Osteoporosis causes fragile bones, which can lead to agonising and disabling fractures. This long-term condition is currently putting 150,000 people in Wales at risk of painful fractures,” she said.

She added the Integrated Osteoporosis Service offered a needs-based range of services to help people when they are at their most vulnerable and said she was ‘delighted’ that her constituents have access to such an excellent service.

During her visit, Ms Watson had an opportunity to meet staff, patients, support group members and the National Osteoporosis Society, and see operation of the DXA scanner at the hospital.

One element of the work includes a dedicated Fracture Liaison Service to ensure patients who have sustained a low-impact fracture are fully assessed. This has been recognised throughout the UK as an example of best practice.

The National Osteoporosis Society has always had a small presence in Northern Ireland but recent activity by our support groups and our Country Development Manager has given us a real boost in the region. During the autumn we hosted a number of events and activities designed to give those affected by osteoporosis living in Northern Ireland the help and information they need.

We held two of our popular What You Need to Know events in Derry and Craigavon in September. Our Derry event was attended by around 30 people, with almost 70 making the journey for the event in Craigavon.

The Craigavon event featured a fascinating talk about osteoporosis from with Dr Damien Gormley, Consultant Orthogeriatrician at Craigavon Area Hospital.

Karen McCoy, a nurse from South Tyrone Hospital is also working to help the National Osteoporosis Society and local community in Derry and Craigavon set up new support groups in Northern Ireland.

Jeanette Owen, National Osteoporosis Society Country Development Manager for Wales, Northern Ireland and the Isle of Man said the Charity, was looking forward to further strengthening its presence in the region.

“We have been trying to increase awareness of osteoporosis in Northern Ireland for some time and we are now making some headway. We’re constantly on the look out for new volunteers to get involved and to help us get the messages out, and the success of our recent events in Derry and Craigavon have demonstrated that there is real thirst for information about osteoporosis out there.”

She added that the Belfast Support Group was currently looking to recruit new committee members. Anyone interested can call Jeannette on 01978 780894 or via email at [email protected]

Malmesbury & Chippenham Group organises antiques valuation dayNorth Wiltshire and Cotswold residents were invited to dust off their heirlooms and bring them along to an Antiques Valuation Roadshow organised by our Malmesbury & Chippenham Support Group recently.

Tenth anniversary for Weston-super-Mare GroupThe Weston-super-Mare group marked its10th anniversary in October with a celebration lunch. Forty members, friends and guests were joined by patron Lord Brian Cotter of Congresbury who has been a great supporter of the group and the Charity for many years. Also present was former consultant rheumatologist and medical adviser to the group, Dr Shane Clarke, and the current rheumatologist, Dr Sandra Green.

Maureen Morrison, South West regional manager, presented Gold Certificates of Appreciation to long-serving members of the committee – Arnold and June Jennings, Anne Clarke, Jan and Terry Gallett and first Chairperson Betty Turbitt. Maureen gave a vote of thanks for all they had done in running a very successful group, often highlighted by the Charity as a ‘beacon’ amongst groups.

Also welcomed as a guest, was the original regional co-ordinator Helen King, who organised the first public meeting in Weston and managed with the help of five of the current committee members to establish the group. Since then the group has gone from strength to strength, lobbying hard with the help of Dr Clarke and Lord Cotter for a DXA machine in Weston and spreading awareness of osteoporosis by giving talks to local organisations and attending events with leaflets and posters.

Now there is a DXA in Weston, but sadly it is mainly supported by a research grant and is only used for one day each week. When the clinic is held the group provides volunteers to meet and

greet patients and they help to reassure them and also tell them about the Charity and the local group.

The group also subsidises a weekly hydrotherapy session for members and with the help of a local grant provides taxis to bring members from outlying villages to the meetings. It is the group’s greatest wish to see the DXA being utilised every day, so that more people can be diagnosed and treated to prevent fractures and pain in the future. They are hoping it won’t take another ten years before their wish comes true!

The event took place at the newly refurbished and historical Malmesbury Town Hall and featured local valuers Moore Allen & Innocent who were astonished at the turnout.

Auctioneer and Valuer, Philip Allwood, who is well known from appearances on television programmes Flog It and Bargain Hunt, said he wasn’t able to make everyone rich, but did manage to send people away better informed about their treasures from their own homes, whilst raising much needed funds for a really worthwhile cause at the same time.

The valuers were kept extremely busy, with people flooding in carrying their possessions. Those visiting were generously allowed enough time to hear detailed information on each item.

Whilst waiting patiently, visitors were treated to light refreshments, including wine and nibbles provided by the Malmesbury & Chippenham Group, and were able to browse the National Osteoporosis Society display stand containing literature and information.

Local businesses had donated some wonderful raffle prizes and generous visitors helped to raise the sale of raffle tickets to £79.

The event was enjoyed by all and the planning and hard work that went into making this unique event a great success was all down to the Malmesbury & Chippenham Group!

Back left to right: Terry Gallett, Ingrid Reinbach, Helen Stokes, Janet Strang, Arnold Jennings, Maureen Morrison, Anne Clarke. Front left to right: Jan Gallett, Betty Turbitt and June Jennings

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Events boost presence in Northern Ireland

Auctioneer and Valuer Philip Allwood casts his eye over an antique plate.


HelplineDo you have a Helpline query of your own?Call the National Osteoporosis Society Helpline between 9am and 5pm Monday to Friday on 0845 450 0230, email [email protected] or write to Helpline, National Osteoporosis Society, Camerton, Bath, BA2 OPJ.

26 Osteoporosis News Winter 2009

I am in my fifties and I have been taking alendronic acid for nearly three years. I am concerned about whether the treatment is working and improving my bone density but I have not had a follow-up scan. I am confused as to how long I should leave it before I approach my doctor about this?

It is understandable you are concerned about getting a repeat DXA scan to see if your treatment is working. This is a common question to the Helpline.

The aim of treatment and management is to reduce the risk of broken bones and this is normally achieved by the combination of drug treatment and lifestyle management,

including healthy eating and adequate calcium and vitamin D, as well as regular weight-bearing exercise.

To assess bone density, a repeat scan is sometimes offered 2 years after commencing a treatment to determine how effective it is. As a result of recent research this is more likely to be 3 years although some clinicians consider 5 years to be appropriate. Response to treatment varies between individuals and as osteoporosis treatments are relatively slow acting it has been suggested that three years may be the minimum period required to give a clear indication of how well a treatment is working.

When you are established on treatment, events such as a fracture may result in your doctor deciding to check the health of your bones with a scan. As the aim of treatment is fracture reduction it could be argued that not breaking a bone and tolerating the treatment suggests that the treatment is working and that a suitable drug is being prescribed. This is an important point as research indicates that the treatments do work if taken as prescribed and a repeat scan is not always necessary to confirm this.

In some specialist centres urine and blood samples are taken regularly and tested to monitor bone turnover – the rate at which bones are remodelling. These tests are unable to determine bone density but can indicate that the treatment is working as it should be. However, not all doctors consider these tests to be necessary.

Discussion with your GP or specialist should help to clarify how your treatment will be managed in the future and ensure you have the medicine you need.

I am taking alendronic acid and am going abroad on holiday. What would be best to use as a substitute if the tap water is not suitable to drink?

The reason that the manufacturers of alendronic acid and alendronate (Fosamax) state in the Patient Information Leaflet (PIL) that their product must be taken with tap water, is to help increase the treatment’s absorption. If the tablet is taken with a food or drink which contains a large amount of minerals such as calcium or magnesium, the drug could bind with the minerals and be excreted rather than absorbed. Tap water is suggested as it is not considered to contain an excessive amount of minerals.

Although the local water may not be safe or available to drink abroad, bottled water is usually available. However, the amount of minerals these contain can be a problem. If it is possible, look for bottled water with the lowest mineral content, though this might be difficult if labelling is inadequate or unreadable. You may be able to research the calcium and magnesium content of major brands in the supermarket here, before you go, and purchase a similar product when you get there. You might find that they vary greatly and interestingly

the cheaper spring waters are often lower in mineral content than well-known mineral water brands.

Alternatively, some people choose not to take their osteoporosis medication if they are only going on their annual short holiday. There is no problem with doing this if it is for a week or two. It should not affect your overall bone health in a negative way, as these treatments have a very slow action on bones and missing a few tablets is unlikely to increase your risk of breaking bones (fracturing) in the long term.

Obviously, it is advisable as far as possible to follow the drug manufacturer’s instructions and take the treatment in a similar way in order to receive the best possible benefit of the medication. Taking your weekly tablet with any other type of liquid apart from water would not be advisable as there would be no guarantee that the medication would be effective.


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