Newsletter
Extracts from the June 2008 Newsletter
Opening Words from the Chairperson
Hi Everyone.
I hope you enjoyed the few days of sun we had, and got your bones out in it, as you know that a little sun each day is so good for us.
Our Study Day was a great success and feedback letters I received have been very good. A lot of work was put into the day, and we hope the professionals who came will listen and do a lot of good for us, so that we can get a DXA scanner at the Queen Elizabeth Hospital.
July will be a busy month again, starting with our Annual Quiz on Wednesday 2 July 2008. We need teams! If you cannot put a team in, we would be pleased to receive raffle prizes. This is always a large raffle and brings in a lot of money.
My Coffee Morning is on Saturday 12 July 2008, from 10 AM to 1 PM. Tickets are £2.50. Expect coffee and home-made cakes. There will be a plant stall, a book stall and raffle. It will be the third time that I have held a coffee morning, with all money going to research. Anyone able to bake a cake for the morning would be much appreciated. Do come along and support me and also join in the fun. It has always been a nice morning with members and lots of friends coming.
Then we will be at the Sandringham Flower Show on Wednesday 30 July 2008, with our information stand. We hope to meet Prince Charles and the Duchess of Cornwall.
Awareness is a good thing to promote, as some people still do not know enough about osteoporosis.
We look forward to seeing as many people as possible at the above events.
My committee works very hard to keep this group going, but we do need you! Do come and support us.
No August meeting - a well-earned rest! See you at the September meeting.
Best wishes.
From our Chairperson, Jill Fysh
Study Day
Osteoporosis Study Day
Our February 2008 Osteoporosis Study Day was a success.
About 100 healthcare professionals attended our Study Day on 28 February. We were very pleased to meet the new Consultant Orthogeriatrician from the Queen Elizabeth Hospital and good to see such a high level of commitment from some GP surgeries; one sent 5 members of staff including two GPs. Also there was a broad spread of skills and training from the private sector as well as NHS.
Comments on the evaluation forms concerning the speakers were nearly all positive, for example:
On Dr Norman Williams, Consultant Rheumatologist, Peterborough: "Very informative, shows the skills necessary for 'Gold Standard' scanning service.
Sonya Stephenson, Fracture Liaison Nurse, Ipswich: Good indicator of the scale of the project and multi-disciplinary team needed.
Bob Rees, Living with osteoporosis: 6++ Entertaining and emotive. Courageous man.
Janet Strang, Volunteer & Projects Manager, NOS: Informative insight into the charity.
On the whole, Well planned, relaxed day
were the comments most received. Since then many of the people attending have taken the trouble to come back to committee members to tell us how much they appreciated the day. We have also been asked by other NOS Groups for information about organising the day, for a report that may be added to Osteoporosis News and to speak at the Groups Conference on 23 October 2008 at Aston University, Birmingham.
Next Steps
So - a successful day. But how far forward does that take us?
We know the hospital and the local Practice Based Commissioning Group are interested in providing a scanning service, but as always, it is dependent on the commissioners from the Norfolk Primary Care Trust purchasing that service. So, we will wait to see what happens and 'help' if at all possible.
Atrial Fibrillation
Some of you may have read a report in the press relating to the possibility of patients taking Fosamax also having a rapid, irregular heart beat (atrial fibrillation).
On checking with the Nurses Helpline at NOS they told us:
The study the article talks about is a very small study, 719 people, and not that conclusive anyway.
There has been a much larger study done using 13,000 people and no link was found between people taking Fosamax and an increase in atrial fibrillation and, therefore, an increased risk of stroke.
The advice from NOS is that GPs have been told not to stop prescribing Fosamax, as the benefits of taking bisphosphonates far outweigh any known risks and as far as we are concerned as a group, if a member is concerned or has any symptoms of irregular heart beat they should be urged to discuss this with their GP as soon as possible.
Barbara Blacklock, Nurse Adviser
NOS Members' Day and AGM
Saturday 5 July
This year, the Members' Day has been arranged in London. It was thought to be the easiest place to access from all parts of the UK. This thinking seems to have been borne out as nearly 500 people have already signed up to attend.
The day is an opportunity to provide attendees with the vital information members have said they need.
There is no fee at all this year to encourage more members to attend, but all the arrangements, venue, lunch and speakers, all cost. Despite negotiating hard with suppliers the total cost will be about £20,000.
This is an opportunity for any NOS member to find out more. I shall be attending and if anybody would like to travel by train with me, I can guarantee it will be a very good day.
The venue is the Novotel London West Hotel, Hammersmith and the programme starts with registration at 9:30 AM, finishing at 4:00 PM.
Roger Francis, Professor of Geriatric Medicine, Freeman Hospital, Newcastle upon Tyne will be giving the Medical Update. There will then be an exercise demonstration using Therabands led by Simon Hanna, Clinical Exercise Specialist from Cambridge.
The Annual General Meeting is from 11:45 AM to 12:45 PM followed by a sandwich lunch.
In the afternoon there are talks on Vertebral Compression Fractures - dealing with pain and problems, by Kirsty Carne and Julia Thomson, Osteoporosis Nurse Helpline, NOS; Making Sense of Tests and Testing, by Richard Eastell, Professor of Bone Metabolism, Northern General Hospital, Sheffield; then Osteoporosis and Nutrition, Sue Lanham-New, Reader in Nutrition, University of Surrey.
After a cup of tea, the last item of the day is Eyes down for Bony Bingo! and your questions to the expert panel.
There will be several opportunities during the day to view the stands and to ask questions of Head Office staff. It will also be a very good time to speak to people from other Groups.
If anybody would like to join the NOS and become a member, I can send them a joining form. I always have some NOS leaflets at our monthly meetings. It is really worthwhile. Where else would you find such a collection of speakers, all fitted into one day - and totally free?
Groups & Volunteers Forum
I attended this meeting in Birmingham on 10 April. This time the main item on the Agenda was the future of the Forum itself. Having contacted all my groups by 'phone or email, I was glad to be able to give the views of five of them on the previous discussion points. Taking views back is the main point of the Forum.
The G & VF was set up with the stated responsibilities to:
- Reflect the views, concerns, ideas and suggestions of the whole Support Group network on decisions affecting Support Group policies and practices
- Contribute to NOS strategies and plans through discussion and feedback
- Contribute and provide feedback on NOS materials during development
- Develop a working partnership between Support Group and volunteers, staff, Members Board and Trustees.
- Influence decision making by providing an insight into group committee members' vision of the NOS strategy and future services.
There was also a stated intention to develop over the following years to accommodate views of individual volunteers.
Both the Members Forum and the Groups Forum are being reviewed by Angela Jordan, NOS Operations Director, and her first draft report for the G & VF caused some heated discussion. She will bring a re-drafted report back to our next meeting in August - dependent on members' views fed back to her before that date.
Items for discussion were:
- name
- style
- cost
- representation
- and the way the forum operates.
It was suggested that the existing forum is closed and its members retired prior to an advert going out to recruit from existing volunteers, for people who may wish to be included.
Personally, I should be very sorry to lose my place on the Forum. I believe it provides a valuable channel of communication between local support Groups and Head Office.
I feel I am just beginning to find out about the problems and plans for the future that the Eastern Groups have. It is quite difficult to build links across the region whilst only using letter, email or telephone. It would be much easier if I could go to meet everybody and talk to them face to face & but that would be hardly feasible, because of cost, and perhaps a job to be undertaken by the Development Managers. What a pity to see these links broken.
If anybody has strong feelings on this, please let me know.
Edith Finbow, Secretary
News from Head Office
Used Printer Cartridges
Many thanks to all the people who have bothered to recycle printer cartridges for the Society. These are still being collected (but not Epson catridges). So far the National Osteoporosis Society has received £1,850 from the company since February 2005. This obviously is not just from this local Group but from all over the country. The Secretary and Chairman have envelopes if you want to contribute your printer cartridges or old mobile phones.
New Website
The National Osteoporosis Society will have its new website up and running in June 2008. Look out for this.
It is also a chance to bring a younger image to the artwork used, and we look forward to seeing them.
Advance Notice
There will be a Garden Show at Stradsett Hall on 4 and 5 July 2009. Lady Sarah Bagge has invited us, the local Group, to take part.
We intend to arrange a Big Bone Walk with extra competitions for children, for instance best skeleton fancy dress costume, paper competition and so forth. This is still a long time in the future but we need to start organising well in advance. If anybody is interested in taking part in the walk, helping with promoting the event or helping on one of the days, please contact your committee members.
Due to this large event in 2009 we have decided not to organise a Bone Walk for September 2008, as we have done over the past two years.
If you would like to find out more about the Stradsett Garden Show which includes a number of events (similar to the Sandringham Flower Show) visit the very good website Stradsett Hall website. Also, a similar event (another Garden Show) is being arranged this year at Abbotts Ripton Hall, near Huntingdon, and some of us have arranged to attend to find out exactly what is involved. This is on 21 and 22 June 2008. Again all the details are on the Abbots Ripton Garden Show website.
Forthcoming Fund-raising Events
See our Diary Dates for a comprehensive list.
All group meetings are held at the London Road Methodist Hall, County Court Road, King’s Lynn, and start at 7.30 PM, unless otherwise stated (map and directions). Everyone is welcome. Entry is free for members, and costs £1.50 for visitors.
Recent Group Events
February
28 February 2008 was a very busy day for the Group. First, there was the Study Day for Healthcare Professionals - more of that under a separate heading, then there was the evening meeting. Bob Rees came from Wales and Janet Strang from Somerset to speak at both so in between we had the opportunity to have a meal at the Methodist Hall.
This was an opportunity for the committee, Janet, Bob and Louise Sullivan, our new Development Manager, to relax and to enjoy each other's company.
At the evening meeting Louise introduced herself, Janet spoke of the changes and future plans for NOS and Bob told of his experiences in suddenly breaking his back and the problem he had in obtaining the correct diagnosis and treatment.
Louise Sullivan replaces Andi Marsh as our Regional contact for the NOS. She used to work for Breast Cancer Care covering the same region and so has come from a similar organisation and is used to relating to the issues faced by groups of volunteers. She is young and enthusiastic and obviously has the motivation and drive to make a difference for osteoporosis.
Janet Strang highlighted how much NOS appreciates all the unpaid work carried out by Group members. Without them it would be impossible to have local contacts and support covering the whole of the UK. Her work now is to encourage those people who do not wish to join a group but, using their own particular skills, would like to volunteer in their own right. This would mean extra people who might like to give talks, go into schools, undertake fundraising.
This would increase the coverage, as there are still quite large areas of the country not covered by groups. Also it would be an added resource for the smaller groups that do not have enough people to carry out every task.
Bob Rees is one such volunteer. He talked about what happened to him. As a 42 year old sales director, used to travelling around the UK and Europe he took his family, with two young children, to the Caribbean. He broke his back dancing, was totally misdiagnosed, there, and again back in Britain, had back surgery, was told he had multiple myeloma, cancer, and would probably have to remain in a wheelchair.
After 18 months he was finally sent to have a DXA scan, told he had the bones of an 80 year old and treated for osteoporosis. He looked on the internet to find out what that meant and contacted the National Osteoporosis Society's Nurses Helpline. From then on everything changed.
As well as the pain his main problem over this time was depression. He felt worthless. He was used to being the provider for his family. He then became the NOS's first Ambassador. He goes around giving talks even though he needs to take morphine every day to manage the pain. He has been on an 18 month course of Forsteo which produced a 16% increase in bone density. He says he feels so grateful to the NOS for giving him his life and self esteem back.
Now, with several volunteers like Bob, what a difference could be made.
March
The speaker for March was Julie Hurst. What a change - Julie had come from Wymondham to talk about the History of Hats.
She told members about the many changes in use for hats, starting with function, identification of tribes or religions, then hats for professions and finally as a fashion accessory.
Julie talked about decorative millinery in France, then London and Manchester for felt hats, and straw hats from around Luton. She went on to demonstrate how she, herself, made raffia hats.
Members also had the opportunity of trying to date the different hats on her display. This was very interesting and a reminder of the great variety of crafts undertaken, promoted and exhibited in Norfolk.
April
In April we had two speakers and not the one we were expecting. Squadron Leader Merrick was unable to attend because of a change in his duties, so we were very grateful to Jeff Hoyle who stepped in at the last moment.
Also Sonia King came to tell members about the Toning Chairs at Lynnsport. These chairs were originally developed 30 years ago by a doctor to help his wife who suffered from polio. They have been used in this country for about 18 years. There are 9 chairs each working a different part of the body with 5 minutes per chair. The chairs move for you so that you are totally supported throughout, reducing any strain on the body.
Sonia offered members of the King's Lynn Group one week's free trial on the chairs plus free induction and measurement.
Measurement entails weighing, height measurement, testing lung capacity, blood pressure and body composition. A 6 week personal work programme is designed and all the tests are done again at the end of the 6 weeks to check progress. If a person is recommended to attend on GP referral this would cost £22 for 10 weeks, to include induction and measurements, otherwise there is a minimum one year contract costing £18.75 per month. This also allows you to use the Bodyworks equipment at Lynnsport as the Toning Chairs are in a separate area but linked to the main gym.
Jeff Hoyle then talked to the members about Japan. He, Ros and a few friends visited the country and found the country so clean, with no litter or graffiti, the people friendly and law abiding and the food wonderful.
Japan has the world's second biggest economy. The large population, 128 million, live mainly in the sprawling cities on the coastal fringes of Japan's four mountainous wooded islands. This means very small rooms, high rise buildings and some very ingenious parking arrangements.
The main religions are Buddhism and Shintoism and we saw photographs of the beautiful temples and despite the lack of space, immaculate gardens. The apartments are so small very few have kitchens, so there are shops open day and night and slot machines from which you can purchase almost anything.
Jeff, with the aid of photographs, took us from Tokyo, through various places to Hiroshima and Nagasaki showing old temples, ornate stations, and very modern buildings. A fascinating look at a place very few of us will see for ourselves. Many thanks to Jeff.
