Newsletter
Extracts from the September 2007 Newsletter
Opening Words from the Chairperson
Hi Everyone.
September seems to have come around very quickly with us having hardly any summer.
We have been very busy working to raise awareness. A huge thank you to all my Committee and helpers at various functions.
The Coffee Morning went ahead but there was a very large cloud hanging over this all week. We feared the rain would continue but the weather was kind to us and Saturday was mostly dry. When it did start raining near the end, being terribly English, we tried to ignore it! We raised £362 and that was more than I expected and more than last year. Thank you to those who baked cakes, brought books, plants and raffle prizes and most importantly those who attended and supported us.
The Quiz again had good support and raised £530. Thanks go to Jeff Hoyle for compiling the questions and to his team of markers and helpers, all of whom go to making the evening a success.
Again this year we were pleased to meet HRH the Duchess of Cornwall and Prince Charles at the Sandringham Flower Show. The Duchess always gives such good support to the National Osteoporosis Society. She asked if we had any services yet in King's Lynn and again this year the answer was, No
. She was very interested in the work we have been doing with schools and also in raising awareness through the distribution of the Information Packs.
Our AGM was well supported and, as always, we are looking for Committee members and new ideas. Sadly no one extra came forward but thanks go to all the Committee for continuing in their existing posts.
Our speaker for the evening had to cancel at the last moment so we were very grateful to Chris Lucas for standing in at short notice to give a talk on Flint Knapping, which was very interesting.
Our NOS Regional Development Manager, Andi Marsh came to support us and it was good to see her.
I would like to thank all our members, old and new, who come to meetings and help in other ways. Please keep it up. Without you there would be no group. Don't forget that we can help you attend meetings if you have a problem with transport, but there must be a minimum of three people per taxi to make it viable.
To those of you who have taken holidays: I hope you have enjoyed them; and those only now going: have a wonderful and safe time. You might even want to give a talk on an interesting place you've visited at group meetings!
Best wishes.
From our Chairperson, Jill Fysh
Osteoporosis Update
This year Dr Williams was highlighting the importance of education and he surprised many with his comments on the use of painkillers. Many people feel they do not want to become too reliant on painkillers such as paracetamol or codeine but Dr Williams recommended always completing the course prescribed as you would with antibiotics. Taking just a couple of tablets if the pain is too bad is not the best way to tackle the problem.
Dr Williams also spoke about the NICE (National Institute of Clinical Excellence) guidance that limits the medication a doctor is allowed to prescribe. The NICE guidance only includes a single treatment, Fosamax (alendronate), and fails to provide alternative options when there are, in fact, many different effective treatments available. One drug never suits everybody, doctors need freedom to be able to prescribe an alternative.
Dr Williams went on to explain the greatest problem with any medication is the patient's non-compliance. In other words, if a patient feels the side effects are unpleasant or they are unhappy with the treatment for any reason, they just stop taking the pill and do not go back to the doctor to discuss the problem.
Other treatments now include IV Pamidronate, for instance. This is given 3 to 4 monthly, with no gut upset. It just means 2 to 3 hours in a day room and is very safe. Doctors need to be allowed the freedom to prescribe the best treatment for an individual patient.
Answering questions from the floor Dr Williams confirmed patients from West Norfolk could still be referred by their GP to Peterborough for a hip and spine DXA scan - the best scan for identifying osteoporosis. The waiting list is now about 6 weeks and a full report and suggested treatment letter is sent back to the GP within a few days.
Many thanks to Dr Williams for supporting the group. He has done this since the group started in 1996.
News on NICE
NICE has finally issued its Final Appraisal Determinations on osteoporosis treatments for post menopausal women, that make recommendations on how treatments are used in the NHS. The documents recommend that only a single treatment, alendronate, is used as a starting point for treatment and they do not include recommendations for alternatives. The NOS is extremely concerned about the lack of suggested alternatives and is lobbying MPs. They also have a petition, a copy of which, Jill and Edie have available.
If any of you would like to sign a copy please contact the Secretary and a copy will be sent to you. Also available at the NOS website.
Groups & Volunteers Forum
Name Change
There has been discussion and concern voiced by some groups about a possible name change for the Society. With devolution, 'national' no longer means the same to people across the British Isles. The NOS is currently undertaking a re-branding exercise, hoping to make the Society more appealing to a younger age group. The name change forms part of these discussions. There need not be a large cost involved. The changes could be made in house and over a period of time. Leaflets and information could be re-printed as they were needed to save wastage.
MOSS
With NHS re-organisation there is a changing picture for mobile and fixed scanning services. So MOSS will be dissolved and NOS will soon be inviting bids for funding from Strategic Health Authorities, Primary Care Trusts and Hospital Boards. Applications must be submitted by the end of October 2007 and funding allocations will be announced by the end of the year.
Among the criteria that applicants will have to meet will be a commitment to maintaining additional scanning services beyond the period that the NOS can help fund.
It will also be necessary to find a suitable partner to take on the existing mobile scanning unit.
Groups Conference: Birmingham, 25 July 2007
I attended this with Ann Pulford, Chairman of the Norwich Osteoporosis Group. Unfortunately for us in King's Lynn the date clashed with the Sandringham Flower Show, so others from our group were unable to attend. It is always a very well organised and worthwhile event, an opportunity not only to meet mostly Committee members from other groups across the country but also many of the staff from Head Office in Bath.
Claire Severgnini, the new NOS Chief Executive, spoke of her vision for the Society. Angela Jordan, now managing the Operations and Membership Department, as part of her talk, spoke about how to encourage more volunteers to complement the support groups and to help make the NOS more visible around the UK. Janet Strang told members the NOS would be advertising in August for another Development Manager to help shoulder their very heavy workload and she assured everyone that as well as being involved in major national campaigns, for instance, trying to get osteoporosis into the new GP contract, she would also be continuing with her work supporting local groups.
Interestingly there were several presentations from local groups on their work, notably Diana Thomas, Ipswich Chairman, on ‘Newly Diagnosed Courses’. Also Professor Eastell spoke on NICE and the future for Osteoporosis.
However, for me, the highlight of the day was listening to Robert Rees from South Wales. We have been wondering how the NOS could use individual volunteers and Rob certainly sold the idea for me!
He is a man with osteoporosis, a very good speaker and he acts as an Ambassador for the Society. There is nothing so powerful as listening to someone who has the condition, knows the problems and has learnt to deal with them. I found this out many years ago listening to Ellen Eade talking about living with osteoporosis to health professionals.
As a man, Robert is able to go to talk to all the men's groups that we are never asked to attend. As a Welshman he has links with the Cardiff Blues and the Welsh Rugby Union. He has set himself a financial target of raising £10,000 this year.
So far he has raised nearly £1,100 from Lions Clubs £700 bucket collection from the Cardiff Blues, Noble Court Holiday Park £3,000, auction of signed rugby jerseys £1,000. He tells his story, enthuses people and they raise the money. I wish he lived a little nearer. He is a wonderful Ambassador. He makes anything sound possible because of his enthusiasm. Locally he might even be able to persuade those sceptics who think osteoporosis only affects women that men suffer as well.
His talk was the last of the afternoon. Well placed to send us home, fully motivated again.
From our Secretary, Edith Finbow
News from Head Office
The National Osteoporosis Society has contributed to the new NHS Choices website, that was launched in June.
The site, which can be found at the NHS has been developed to help the public make choices about their health. This includes lifestyle decisions on issues such as smoking, drinking and exercise, through practical aspects of finding and using NHS services.
The site also gives members of the public information to help them ask their GP the right questions about their health and treatments they might need.
The NOS was approached to work with the NHS on this site from the outset, which is why the content is heavily laden with our messages, members and in-house experts.
One of the main sections on the site is Health A to Z, covering more than 850 conditions and treatments, with health professionals offering their advice and support and posing the questions people should ask to make sure they get the best treatment. If you want to find out more go to the NHS website and follow the leads to choices then to osteoporosis.
Education
At the May 2007 group meeting we were able to make a presentation to Terrington St Clement School for the work undertaken by John Braybrook, teacher and IT lead for the school and two of his pupils. The two boys had compiled a Power Point Presentation on Osteoporosis. The group had challenged the children to work out a way of getting the healthy eating and exercise message across to children of their own age. Rather than posters and art work they had decided on an IT project. The results were wonderful and will be put on the Norfolk Schools Intranet. This will mean all schools in Norfolk will be able to use their work as a teaching aid.
There was considerable interest shown by other Osteoporosis Groups across the country when our Secretary Edith Finbow took the laptop and presentation to the Groups Conference. Distributed on CD this can be used in any school across the country. It can also be used when talking to older groups of people.
In June 2007 the other schools that had opted to take part in the Art Challenge were highlighted. Prize winners at Greyfriars and Gaywood Community Primary Schools received certificates and Smith's gift tokens. Peggy Spencer and Edith Finbow, while talking to the children, were very impressed with how much they knew about the subject and how well they had retained that knowledge. Many of the children had covered the work in September last year.
NB: many thanks to Chris Hornby, Jo Garner, the photographers and the Citizen Newspaper for the coverage. Pictures of children and front page reporting are a first-class way of bringing osteoporosis to people's notice.
Forthcoming Fund-raising Events
See our Diary Dates for a comprehensive list.
Recent Group Events
Captain George Vancouver & King's Lynn | May 2007
We were glad to welcome back Bryan Howling to talk to the group about Captain George Vancouver.
Captain Vancouver was born in Lynn in 1757 and this year there are great celebrations marking the 250th Anniversary of his birth, here in King’s Lynn and also in Vancouver, British Columbia, Canada and Vancouver, Washington State, America.
George Vancouver was born in New Conduit Street. His house was pulled down to make way for the 1960s shopping development but some old photographs still exist. His mother died when George was only 11. As he was the youngest of the family, his father needed to find an occupation for him. Father, John Jasper, worked for the Custom House, collecting taxes and he had many high-ranking connections particularly within the navy. It was arranged that George should join Captain James Cook, with his friend James Burney, on Cook's second voyage to Australia.
He was later a midshipman on Captain Cook's last voyage, from 1776 to 1779, which visited the Sandwich Islands (now known as Hawaii) where Captain Cook was killed. As a Lieutenant, Vancouver sailed in the Caribbean in the war against France and Spain and, promoted Commander, was sent in 1791 to explore and survey South West Australia, the approaches to Hawaii and the west coast of America.
Captain Vancouver's major work was to chart the west coast of America from San Diego to the Alaskan Pan Handle. The sailors covered 65,000 miles, 10,000 of those in small boats to map all the small inlets and coves. Some of these charts were still in use until nearly the end of 20th Century.
He returned in 1795 after a voyage lasting four and a half years, in poor health, and died in May 1798 in Petersham.
As part of the local celebrations two events are of particular interest to the group. Firstly the Samphire Quilters have made a quilt celebrating Captain Vancouver's achievements and this is now on permanent display at the Old Gaol House in Lynn. Well worth a visit and hopefully we will hear more about this when Sheila Cetti comes to talk to the group in October. Secondly, a great deal of work was undertaken with local school children - bringing history to life. The King's Lynn Art Centre Gallery also held some items for sale. Amongst these were our Notepads showing the Captain Vancouver statue outside the Custom House. 100 Notepads were sold.
Osteoporosis Update | June 2007
This is the month when every year we welcome our Medical Adviser, Dr Norman Williams, Consultant Rheumatologist from the Edith Cavell Hospital, Peterborough to update members on new osteoporosis treatments. Read about Dr Williams's Osteoporosis Update above.
AGM | July 2007
The group celebrated our 11th year at the Annual General Meeting. As Jill highlighted at the beginning of the Newsletter, we would really like to welcome some new members to the Committee. This would encourage new ideas and mean a shared workload. However, your present Committee Members are all willing to stand and to retain their current positions. If you have any ideas or comments please get in touch.
Annual Quiz | July 2007
For the ninth year we held our popular Quiz, again at the Duke's Head Hotel. This was the 6th one for which Jeff Hoyle had been the quizmaster and the Committee felt he needed a special pat on the back - also hoping he might feel encouraged to do the same again next year. We gave him a painting by Austin Pearce of the Red Mount. This year with its refurbishment perhaps we will all be able to see inside it again. There may even be questions on this next year!
29 teams took part and a profit of £530 was made. In a way it seems people come, not to win prizes, but to have a good, fun evening out. Jeff and his team never let us down.
