Newsletter
Extracts from the June 2007 Newsletter
Opening Words from the Chairperson
Summer
The Vancouver Building, College of West Anglia, King’s Lynn, in summertime sun.
Hi Everyone.
Since writing the last Newsletter the weather has been wonderful and that makes us all feel better. So get out there - walking strengthens your legs and improves balance.
I will be holding a Coffee Morning on Saturday 30 June 2007 10:00 AM to 1:00 PM, Snettisham. Come along and give us your support. Bring your friends and if you can bake a cake or bring along plants or books that would be very helpful.
The money raised from this event will be sent to NOS Head Office for research. Obviously research helps us all.
We are now working hard on preparations for the Quiz. As mentioned on our Diary Dates page, this will be held in the Ballroom at the Duke’s Head Hotel on Thursday 12 July 2007. Jeff Hoyle will be the Quizmaster and all your committee are working hard on your behalf. If you would like to enter a team or give a raffle prize let one of the Committee know.
We would like to hear your comments on our monthly meetings. Can you suggest a speaker? Are there some that you particularly like? Would you like to suggest changes? If you don’t tell us, we don’t know. We would like to see as many of our members - and friends - attending these meetings as possible. If you would like to see the Group doing things differently, please let us know.
Peggy Spencer, our President, has not been very, well but is now feeling much better. We hope to see her at our next meeting.
From our Chairperson, Jill Fysh
Aclasta (Stop Press News from Head Office)
Many of you will have seen the press, radio and TV coverage of the new drug Aclasta, a ‘once-a-year’ treatment.
The new drug, zoledronic acid, has been tested on almost 8,000 women in a trial that included patients from Aberdeen, Sheffield, Liverpool and Glasgow. They were given annual infusions of either Aclasta or a placebo, and followed for three years. The infusion takes about 15 minutes and the results, published in The New England Journal of Medicine, showed a 70% reduction in fractures of the vertebrae, and a 41% reduction in hip fractures.
Professor Black of the University of California, who led the study, and his co-authors concluded:
A regimen of infusions once a year appears to ensure that patients will have a full treatment effect for at least 12 months.
This is to tackle the problem of non-compliance. Many people who are prescribed other bisphosphonates, such as Fosamax or Actonel stop taking the pills after a few months.
Richard Eastell, Professor of Bone Metabolism at the University of Sheffield and Professor David Reid, of the University of Aberdeen, and both Trustees of the National Osteoporosis Society, are co-authors of the study.
Aclasta is made by Novartis, which funded the study. We contacted the NOS Nurses Helpline to verify our facts and was told the drug is not yet licensed for general use, only for the treatment of Paget’s Disease so far. The license will possibly be granted either at the end of this year or early next year. This is another in the range of bisphosphonate drugs. There is already another infusion drug, Bon Viva - a 3 monthly treatment. There have been no studies as yet to compare various treatments.
A 100 ml infusion containing 5 mg of the drug, the dose in the trial, would cost the NHS £284 compared with the cost of Actonel which is £265 per annum. New drugs are not covered by NICE guidance. We need to wait to see if Aclasta and Bon Viva receive their support. As usual, it will probably be licensed for the use as a treatment for post-meopausal women. It would be up to the consultant whether it was thought suitable for the treatment of men or younger women.
Osteoporosis in Men
We know that almost 1 in 5 men over the age of 50 will break a bone as a result of osteoporosis, but only one drug is licensed to treat men. Why?
Most of the early work researching drugs looked at osteoporosis in post-menopausal women (who are more commonly affected by the disease), which is why most drugs are only licensed to treat women in this age group. Also, management of osteoporosis in men is generally more complex. As such, most men (particularly younger men) will be seen by a specialist.
In around half of the cases, osteoporosis will have an underlying cause, such as low levels of testosterone or the taking of cortico-steroid tablets long term for conditions such as asthma. Testosterone replacement therapy can be given for the former and either Fosamax or Didronel for the latter.
However, where there is no known cause for fragile bones in men the options are limited, and Fosamax is the only licensed drug. As the expert in their field, a specialist is in the best position to determine which drug is right for you. They are also likely to be comfortable prescribing a drug treatment outside of its licence, such as Forsteo for severe osteoporosis. That is, of course, if the local Primary Care Trust will fund the treatment.
NOS Nurses Helpline: 0845 450 0230
June is Osteoporosis Month
For many years the NOS has promoted osteoporosis awareness and fundraising particularly during the month of June. This year they intend to capitalise on the International Osteoporosis Foundation’s (IOF) theme for the year, so there will be posters available, all based on Bone Appetit.
Our Chairperson Jill is holding a Coffee Morning on 30 June 2007. We will also be having displays at the Queen Elizabeth Hospital, King’s Lynn, at the beginning of June 2007 in the main cafeteria area, and on 26 June in the Physiotherapy Department.
If anybody would like to hold their own event, we can help with leaflets, posters and press coverage. Just contact Edie, 01553 773309.
Groups & Volunteers Forum
I attended the recent Forum meeting in Birmingham at the beginning of May and am now able to update you on these discussions.
Department of Health £20 million Investment
The Department of Health (DH) is failing to monitor the spending of this money that had been announced for scans and scanning equipment in 2005. The first £3 million was to be spent on scans. It’s difficult to accurately track this, but it may have been spent on Boot’s scans where there was no local alternative. Not in our area of course. The following £17 million was to go to Strategic Health Authorities (SHA) to be ring-fenced for the purchase of DXA machines. Possibly this has not been done. The recent reconfigurations of both SHAs and Primary Care Trusts (PCTs) has confused matters considerably. The NOS will be following this up during the summer months, working with MPs, SHAs and PCTs.
NICE update
The NOS submitted its response to NICE on 23 March 2007. It included a list of 5129 members’ and stakeholders’ names and postcodes who contacted the NOS by various means to voice their concerns. The response is expected at the end of May but for now we would ask you not to lobby your MP. We would prefer you to leave this until a later stage.
MOSS
The Mobile Osteoporosis Scanning Service will be sited in Crawley from the beginning of May, staffed by a Scanner Operator and an Assistant/Driver. It will then go out on a daily basis. This area was chosen as it had the lowest number of scans per head of population. The project continues for three years. After that time, it will be possible to bid for the equipment.
CRB checks
If any of our members drove a minibus or visited people on a one-to-one basis, we would need a Criminal Record Bureau check. This does not affect us at present.
Operations Strategy (2007 - 2010)
The outside consultant, Susan Lacy, has now completed her report. The Operational Plan will be discussed and formulated following 22 May 2007 at the Trustees Meeting.
In our discussions, the Forum agreed that the National Osteoporosis Society should be a member-led organisation. The local groups form the local service supported by staff at Camerton as well as vice versa. Some thought needs to be given as to how this local service can be made more similar across Britain. At present it varies greatly depending on where you live, the kind of NHS provision in your area, funding difficulties and different skills held in the groups. For instance, some groups provide exercise classes, link into hospital clinics, or concentrate on going into schools. Each group works in an individual way to make the most of local opportunities and skills. It’s difficult to see how this can be changed. I can report more on this after the August meeting.
Edith Finbow
Recent Fund-raising
Collections at Tesco’s
We have had two collections, one at Tesco’s Hardwick store that raised £235 on 27th January and the other at the Gaywood store a month later that raised £181. Many thanks to all those kind people who responded to our recent request and helped by standing with a collecting tin.
GEAR - Phillip Worlledge
We have our own Great East Anglian Run now and this year Phillip ran the 10 k course for us. Many thanks to him. With the money he raised in sponsorship we will be sending £200 to support the National Society’s Nurses Helpline.
Forthcoming Fund-raising Events
See our Diary Dates for a comprehensive list.
Recent Group Events
Cigarette Cards | February 2007
Colin Fawcett came to this meeting to tell members about his vast collection of cigarette cards.
These cards had started in America in the late 1800s and stopped around 1939 when paper was needed for the war effort. Originally cigarettes were in paper packets. Card was introduced to stop the cigarettes being crushed. Then the idea came to put some advertising on the card, and then pictures - originally of the President or the White House. The next idea was flowers or animals. As sets of cards were produced it was realised that people wanted to collect full sets and obviously this increased sales. The idea came to the UK in 1899 and the cards were produced in very good colour. At the turn of the century there were 130 cigarette manufacturers in Britain, and although Wills and then Players started the trend, soon all the manufacturers were producing cards to increase their trade.
American cigarettes started to be imported. To counter this and to protect British manufacturers first Wills and Players joined forces, and then in 1902 all the other companies joined with them to become the International Tobacco Company. This period became known as the Tobacco Wars and lasted 10 years. Up to 1914 collecting cards became very popular and these early cards are the most valuable.
Colin has been collecting for 50 years and was happy to value the cards that members had brought along to the meeting, some of them finding they had a collection worth several hundreds of pounds.
Flamenco & Fieras | March 2007
March might be a cold and windy month, but members were transported to sunny Spain by Wendy Mitcham, our speaker for the evening. Wendy came dressed in a red and black flamenco dress and with a display of dolls, castanets, mantillas, shawls and a tambourine.
Flamenco is more than folk music. It embodies a complex musical tradition and originates mainly from Andalusia, growing from roots in Andalusian, Moorish, Gypsy and Jewish music.
Most of us were too shy to join in with the dancing, although we did manage to tap out the rhythms on the castanets Wendy distributed. However, Wendy enthusiastically sang, danced and clapped and that provided us with a lively evening’s entertainment.
Cycling from Norwich to Prague | April 2007
Charlie Askew is the sort of person you could go on listening to all night. He came to tell members about his cycle ride from Norwich to Prague, a journey of 1000 miles to raise money for the Quidenham Childrens’ Hospice.
Charlie had been a dairy farmer for 23 years but, because of changes in farming, had decided on a new career. For the last 9 years he has been working in education at the Easton College, Norwich, mainly teaching animal husbandry.
He found that instead of being tied to the farm and early morning milking every day of the year, he now has a little more time to do other things. The Easton College has links with a college in the Czech Republic, just outside Prague. These links had been formed through international ploughing competitions. Charlie had been to visit the college three times.
In 2005 a friend’s little girl had died of a very rare blood disease, spending her last days at home without the help of a Hospice. He realised afterwards how the Quidenham Hospice could have helped the family.
Charlie decided to cycle from Norwich to Prague. In doing that, he would cover 1000 miles. He went on to tell us about the things that happened along the way. Although he had trained here in the UK for two months in glorious sunshine, almost all the actual trip was undertaken in heavy rain.
Just outside Liege he had a serious accident. His bike was written off, his cycle helmet split in two and he ended up in hospital, lucky to be alive. He was soon back on a new bike and continuing with his challenge, however.
His main comments were on the wonderful friends he made. He had to arrange all the overnight stays, support and sponsorship as this was not a nationally organised event. His enthusiasm was such that we asked if he would consider doing something similar again. His response was that this took place in 2006 and he felt he needed a bit of a rest but might consider another challenge in three years time.
People undertake some amazing feats for charity. Charlie raised £16641 for the Hospice. We can only encourage and perhaps contribute in a small way to their charity. We also hope Charlie will come back and tell us about his next adventure.
