Newsletter
Extracts from the December 2006 Newsletter
Opening Words from the Acting Chairperson
Winter
Snow-covered Beech trees in winter.
Hi Everyone.
This is my first Newsletter as Acting Chairperson. I feel I have to speak about what we have achieved in the last ten years.
Awareness is the most important thing. The comfort that our members feel in knowing there is always someone they can talk to. I know only too well that a diagnosis is a devastating blow, having dealt with this myself. Frustration and loneliness can set in. You need tremendous spirit and fight. I feel privileged to pass on my feelings and knowledge of living with osteoporosis to help others. Sometimes we shy away from difficult situations, and we do have to try to be positive.
I think, as a Group, we have been extremely successful and helped a great many people. I feel proud to be part of all this.
We have had a very busy 10th Anniversary Year and look forward to continued success. Thank you for the part you have played during the year.
I would like to wish all our members who are feeling poorly and who are having treatment for various things, a speedy recovery.
We now have the worst weather to deal with, so take care, look out for the frost and wet leaves - we don’t want any broken bones and as this is the last Newsletter for 2006, I wish you all a healthy and happy New Year.
Best wishes for Christmas.
From our Acting Chairperson, Jill Fysh
The Bone Walk
The Bone Walk
Our combined Bone/Town Walk.
Thursday 28 September 2006
Although quite large events were organised by NOS and local groups all over the country, ours was quite low key.
A small party of us took a gentle walk with Dr Paul Richards around a part of Medieval Lynn. We all enjoyed ourselves strolling in the warm evening sunshine, and hope to persuade Dr Richards to lead a similar town walk next year. There is so much to see in King’s Lynn and with such an knowledgeable guide, never lost for words and enthusiasm, what could be more enjoyable.
Since there were so few of us it is surprising; but we were able to send £429 to headquarters from gifts and sponsorship. Well done everyone. Thank you for your support.
£100 of that money was a special donation from Austin Pearce. He had raffled one of his paintings at a Goddard’s Christmas event, £75, plus a donation from Mr Coe on behalf of Goddard’s, £25, and requested the money be added to the Bone Walk donation. We have received a letter of thanks from Camerton.
Your donation today will make a real difference. The following examples show how your gift could be put to use.
- £15 could pay for a nurse to answer one helpline call
- £25 could provide 10 training packs for health professionals
- £50 could pay for 200 helpline information packs on pain control, exercise and healthy eating
- £75 would cover the costs to produce and send out information leaflets on osteoporosis
- £100 could pay for a nurse to be trained in the latest developments in osteoporosis.
I want to reiterate how much we appreciate your efforts.
Stephanie Lear, Events Fundraiser
Good News Locally
The good news locally is that Ros Harre has been working with representatives from some local schools and we may be able to arrange a school activities day for Junior schools next year. In fact we have been talking about a number of exciting plans. More about these when they have been finalised in the New Year.
Bad News Nationally — NICE
Nationally, the bad news is concerning the NICE Appraisal Consultation Document. NICE (The National Institute for Clinical Excellence) produces guidance for the NHS in England and Wales. It is currently producing two types of guidance on osteoporosis:
- Technology Appraisals on ‘primary prevention’ and ‘secondary prevention’
- a Clinical Guideline which will set a broad standard of care.
Technology Appraisals are highly significant as they set recommendations for who should, and who shoudn’t, be offered treatments for osteoporosis. These recommendations are compulsory for the NHS.
ACDs (Appraisal Consultation Documents) are important as they set out NICE’s preliminary recommendations (e.g. draft). When they receive comments on the ACD, NICE convenes again and produces a document called a Final Appraisal Determination (FAD) setting out their final recommendations. If no one appeals against this document it is published as NICE guidance a few weeks later.
The National Osteoporosis Society has been a stakeholder, with drug companies and representatives from the Royal Colleges, of GPs, physicians, and so on, and all the top professors helping inform the discussions so far. Very little notice seems to have been taken of their comments. They will be appealing when the time is appropriate, which is when the FAD is published.
Appraisal Consultation Document (ACD)
Primary prevention means preventing fractures in people who have not had a previous osteoporotic fracture.
So the group of people addressed in this ACD is postmenopausal women who have osteoporosis as identified by a DXA scan. They haven’t had a previous osteoporotic fracture but are at higher risk of an osteoporotic fracture than the general population.
The Appraisal looks at Fosamax, Didronel PMO, Actonel, Evista and Protelos. Ibandronate is not included and this appraisal does not cover postmenopausal women on corticosteroid treatment or men.
The clinical risk factors for case finding have been listed as:
- parental history of hip fracture
- low body mass index
- alcohol intake of more than 3 units per day
- and medical conditions associated with low Bone Mineral Density (BMD).
Smoking has not been included.
Preliminary Recommendations
- Treat with Fosamax, but cheaper form, if age 75 and over plus a T score of -2.5 or below with one or more clinical risk factors.
- Treat with Didronel, although this is proven less effective, as an alternative, using the same criteria.
- Treat with Actonel if age 75 and over plus a T score of -3.0 or below with one or more clinical risk factors and unable to comply or are intolerant of Fosamax.
- Treat with Protelos if age 75 and over plus a T score of -4.0 or below with the same number of risk factors and if intolerant to the other two treatments.
- Evista is not recommended for primary prevention.
The recommendations cover the treatment of women who have normal levels of calcium and vitamin D. Unless clinicians are confident that women have adequate calcium/vitamin D, supplementation should be considered.
For People with Osteoporosis…
This means:
- No woman under the age of 75 would be treated to prevent a first fracture.
- Didronel may be prescribed for women as an alternative to Fosamax, although less effective. The cost of Didronel is £90 per year against £265 for weekly Fosamax.
- Actonel will be available when there is a further deterioration, as this is a little more costly.
- Women who cannot tolerate any of the above bisphosphonates will be given Protelos (strontium ranelate) only when their BMD is -4.0, again because of cost as this is £334 per person per annum.
- Raloxifene will not be offered at all to this group.
Nationally, The Good News
The National Osteoporosis Society (NOS) has been chosen by the Grand Lodge of Mark Master Masons to receive a £3 million donation to invest in a new mobile scanning service. The service known as MOSS, will deliver a mobile axial DXA service in areas of England and Wales. The donation will fund up to ten mobile scanners, the first scanner in Spring 2007. Evaluation of the operation of the first scanner will then inform decisions on the implementation of further scanners.
The scanners will be owned by NOS but run as a separate company. Richard Munro has been employed to lead this project and he will be making contact with local Groups in previously identified ‘black hole areas’.
A year ago NOS commissioned a survey to identify areas of greatest need and ours was one of them.
A mobile scanner is a purpose-built 7.5 tonne 20 foot vehicle containing an axial DXA scanner (which measures bone mineral density at the hip and spine). The scanners will be staffed by a trained radiographer and a healthcare assistant. Due to the size of the vehicle an HGV licence is not needed, so those staff will be trained to drive the vehicle. The scanners will be driven to different host vehicles eg village halls, GP surgeries, in local communities on a daily basis from a secure home base where it ‘lives’. Each scanner would have the capacity to carry out 3000 scans each year and should result in reduced journey times for people who need scans.
At present there is an annual shortfall of around 400,000 bone density scans in the NHS in England and Wales. This service will particularly help in those geographical areas where there is inadequate provision.
Scan appointments will be made via referral from NHS GPs, hospital consultants, and other health care professionals who have identified a person as having risk factors and requiring further investigation.
The NOS believes the NHS should fund DXA scans and so will not provide a private service in which individuals would be charged for a scan.
We will be hearing more about this in early 2007 and will keep our readers informed.
Nurses Helpline 0845 450 0230
On 10 October 2006, I accompanied Edith Finbow to Peterborough for an Exchange Of Information Day, run by NOS.
This was the first of such events, which I had attended and I looked forward to it. The day more than surpassed my expectations and I thoroughly enjoyed it. It was welcoming, professional and very informative. The venue and refreshments were excellent and the speakers were varied and interesting. I thought, I would like to write about one of the presentations, which is of particular interest to me, not least because I have contacted the helpline on several occasions and have always been most impressed with the service.
Julia Thompson, RGN, is one of 5 (2 full time and 3 part time) NOS Osteoporosis Helpline Nurses. She is, quite clearly, very dedicated towards her work and spoke most eloquently about her role. Julia explained that she usually talks on the subject of Osteoporosis but on this occasion her brief was to tell us about the NOS Helpline Service itself.
Julia explained that the Helpline service started in 1992 when it was clear that there was a need. All staff are registered nurses, and have the constant support and backup from scientific advisors. There is regular in-house training and external supervision, training - and update sessions. The aim of the service is to provide information and support to users. The work of NOS nurses is not only to answer the helpline, but also to reply to emails and letters; this involves many hours of work and, of course, can only be undertaken once the telephone lines are closed. The nurses also undertake to provide people with NOS publications, information sheets, booklets, leaflets and details about the NOS website. They are involved with the medical letters page of Osteoporosis News. The nurses also work very closely with other NOS Departments, and refer callers on as appropriate.
Julia told us that in 1992, there were only 2 part time nurses on the helpline, who had to deal with phone calls and letters. In 2002 a Nurse Manager was appointed with 3 full-time and 2 part time nurses. In 2005 funding could only provide for a helpline supervisor and 2 full time nurses and sadly the telephone helpline hours were reduced to 10 AM - 3 PM.
However, in 2006, due to demand, extra funding - much raised as a result of efforts by groups like ours - was provided and staff levels have increased to 2 full time and 3 part time nurses. The service looks set to expand further in the future.
Julia told us that 1000 telephone calls, 95 emails and 25 letters are answered in a month. Letters are replied to in 10 working days and emails in 5, there had been some discussion about the fairness in the shorter time given to reply to emails but it was felt that with modern technology, people expect a more rapid response to emails, given the time involved in ‘snail’ mail. In practice, only 40% of callers need/receive a response. The nurses also have access to a Language Line, for those for whom English is not their first language.
Of the telephone enquirers, 8% are male. 25% are NOS members. The average age of callers is 65 - 75 years. The main topics that are repeatedly brought up by callers are about:
- drugs (risks, benefits and side effects)
- pain
- diagnosis and tests
- complementary therapies
- exercise
- physiotherapy
- problems with daily living
- fracture management
- alcohol
- smoking
- fall prevention
Osteoporosis understanding, prevention, diet, and so on. The busiest time is between 10 AM - 12 noon and most calls are received in the early part of the week. The average length of a call is 7 minutes.
The evaluation of the nature of the calls identifies a need for information, disseminated to more and more people with NOS approval and with text written by the nurses with input from medical/scientific advisers and members’ forum and all this is in the pipeline.
In 2005 a Helpline Evaluation was conducted, to consider future helpline strategy. This revealed that there is a high satisfaction with the service from users. However, there is need for further expansion to increase the proportion of calls answered and reduce response time to emails. More response time information is being added to the website - because of the demand there are times when people have had difficulty getting through to the helpline.
A user evaluation was commissioned for 2006; there has been a very high response rate. 20 callers interviewed 1000 callers (interestingly I was one of them!). Letters and email enquirers were sent questionnaires, with questions on satisfaction and outcomes. The results are eagerly awaited.
Julia went on to explain that NOS is in close contact with other helplines and is in association with 10 other charities to ‘compare notes’ in all aspects of the service, as it is continually striving to further improve the service it provides.
Funding, therefore, is paramount to NOS being able to develop the helpline service and is heavily dependant on financial backing from various trusts, donations from individuals, core funding and, of course, the generosity of members and groups like our own. Julia concluded by saying a big thank you for the donations from local support groups.
I am very impressed with the NOS helpline and with the dedication of the nurses who work for it. I have always advised people and many of our members to contact the helpline and since hearing Julia’s presentation feel even more that the value of such a service must never be underestimated and, therefore, urge any of you, if you are in doubt, anxious or need more information - pick up the phone. The number is 0845 450 0230.
Barbara Blacklock
Forthcoming Fund-raising Events
See our Diary Dates for a comprehensive list.
Recent Group Events
Cancelled event | August 2006
We decided not to meet in August. It was our intention for a small party to go to the Nuclear Medicine department of the West Suffolk Hospital to go round the newly-fitted department with Tony Bennett. However, the machine we particularly wanted to see was not working on the day of our planned visit, so we cancelled.
Medieval Lynn | September 2006
In September we had the Bone Walk first, then came back to the hall and Dr Paul Richards went on to speak about King’s Lynn and its connections with Germany in the Hanseatic League.
The town of Lynn was recognised early by the merchants of Hamburg, Lübeck and Bremen that formed the Hansa, an alliance that increasingly dominated Northern European trade. The Hansa were granted special liberties in Lynn in 1271, although they were not able to build their own warehouse until 1475. The strong links were formed due to the fact it was cheaper to bring timber from the Baltic say, by sea, rather than overland from Suffolk.
Trade has always been driven by cost imperatives it seems. Britain was exporting wool and cloth from the port of Lynn and importing wood and beeswax from Russia. All this trade was organised through Germany with the Germans taking a profit in silver. After London and Southampton, Lynn and Boston were the wealthiest ports.
As always the information and interesting facts rolled off Dr Richards’ tongue with great ease. He had already being speaking to Romanian students during the day, taken us on the Bone Walk and then completed an hour and a half talk. You would only know by his slightly husky voice. Nothing dampens his enthusiasm. Many thanks to him.
Jewellery Making | October 2006
In October Val Smith came to demonstrate jewellery making. One or two of our number had a go but this is very fine work and most members opted to just look and to buy quite a number of items that she had for sale.
