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The Brittle Bone Society
Newsletter
Supporting people who live with bones that break
Issue No. 106 – Spring 2013
MEMBERSHIP D
RIVE If all members encouraged 3 people to su by donating £10pport us a that would tota year £25,000 per yea l r.
BBS ALL SET FOR Conference 2013 Conference set to roll out another set of amazing talks and workshops.
So start rehearsing your ‘act’ for the big night. BBS have arranged filming with a professional crew for our talent show and also to create information DVDs from workshops. We expect our annual conference to be as popular as ever, so don’t delay and reserve your accommodation.
“Banksy WASN’T HERE!” Conference 2013 is agreed, and is set for the East Midlands, the Radisson Blu Hotel, from Friday 30th August to Sunday 1st September. We have posted surveys online to help us agree best topics and subjects for Conference and to boost membership. If you don’t access online you can drop us a note or make a phone call to let us know what you would like to hear at Conference. This year’s theme is “Support, Embrace and Inspire”. We will be launching our Cool Bones programme for 11-15 year olds, our keynote talk will feature Spines and Skulls and we have a wide range of topics including mental health and well being, child psychology, sharing sessions, one to ones, our popular awards event and Kids Talent Show.
The Botterill & Simpson family and friends net £10k for BBS Botterill Gala Dinner runaway success – and Stevie Simspon runs various events to net huge figures for UK Charity.
An outstanding few months of fundraising with amazing results across the UK, Northern Ireland and Republic of Ireland. More highlighted inside this issue
Fees for Membership and Supporters Our membership fee structure has been unchanged for 25 years. It is time to make a change, not least to help with the financing of our Charity. We are also bringing in a new idea for financial support of the Charity. More details on the last page of this newsletter.
The BBS had some interesting press recently when it was thought that a priceless Banksy had been painted onto the back door of our HQ. Extensive investigation by art experts established it wasn’t a Banksy after all. It was all most entertaining – and our little figure helped us spearhead a local Wishbone Day Campaign poster to enlist a number of primary schools to get involved in May celebrations...so every cloud!
BBS Factsheets launch!
Twelve months on from the set up of our Medical Advisory Board (“MAB”) and after intensive meetings, emails and discussions with healthcare professionals on our MAB and POINT members, we have launched the final drafts of BBS factsheets as pdf documents on our website. The topics for the factsheets are: Advice for Primary or Secondary School Children, Caring for an Infant, Children with OI in PE, Managing Fractures, Adults with OI, Bisphosphonates, Dental, General, Genetics and Hearing. Members can review the documents online now at www.brittlebone.org. Comments can be emailed to bbs@brittlebone.org. We will then bring quantities of the factsheets to Conference. We would like to thank everybody who helped us put them together. We will also distribute the factsheets to all the NHS hospitals we are in contact with, and if there are any NHS hospitals you would like us to send them on to, then please get in touch. Thank you all for your patience and note these documents will be reviewed at regular intervals with the input of the MAB.
see page 3
Farewell to BBS Charity shop & thank you Theresa 1
CEO calendar update... BBS Conference 2013 is set for August 30th in the East Midlands. Professor Bishop will give a talk at the Friday evening dinner entitled ‘the Good, the Bad & the Ugly’. We have fantastic speakers from across the centres of excellence—Birmingham, Bristol, GOSH London, Sheffield and Yorkhill in Glasgow. We just gained significant funding for Cool Bones - a new project to launch at Conference. I am sure you will be excited when you read about Cool Bones on the back page of this newsletter. Our volunteer support groups have been busy and doing a marvellous job in their first year under Coreen’s direction. We have been in important and encouraging discussions with funders over the past few months. Wheelchair manufacturers Permobil visited HQ to confirm they are keen to continue attending our events and to support us with sponsorship.
We attended Belfast for our annual youth event—VOICE and made first inroads to gaining support in parliamentary circles there. Next on the list is to try to explore support in the Dail for OI representation in the Republic of Ireland.
MAB
We attended our third MAB meeting in GOSH London—and discussed conference topics and speakers and gained approval for factsheets. We also discussed the BBS endorsing a number of important NHS research projects.
Conference 2014
It’s not too soon to start planning where we go in 2014. Its our hope to announce in August where we will be going next year.
Wishbone 2014
A number of schools have pledged to take part in Wishbone Day next year but we want more—so please ask your school NOW. We can send information to help.
Resources at HQ
Parliamentary
We attended the Rare Disease UK event at Holyrood. Elaine Healey and Secretary John Phillips attended RDUK gatherings at Westminster and Kat Watkins was at the Welsh Assembly meeting. Top to bottom:
JANUARY Introducing BBC Children in Need’s LesleyAnn Russell to our first volunteer support group gathering with delegates enjoying a Burns supper.
FEBRUARY With Govt Minister Mr Joe FitzPatrick supporting Rare Disease Day at Scottish Parliament and meeting the Minister for Health and Wellbeing Mr Alex Neil MSP
MARCH Receiving our Volunteer Friendly Award.
APRIL Joining everyone in the Murder Mystery Drama at VOICE in Northern Ireland. That’s me as a Barrister? Quizzing Anna Williams
It’s been a busy 6 months and lots more to do before Conference and a commitment from us all to build another great conference programme for all to enjoy. With the immediacy of Facebook, it’s natural we get questions in real time. It’s fair to say we do our utmost to try to respond as quickly as possible—it can be difficult to achieve turnaround times as fast as we would hope but we do our best. Our new database is helping us enormously and an upgraded website is currently on-schedule for launch before August.
Fundraisers
Simply continue to amaze and surprise us with their efforts. A selection is in this newsletter. BBS staff have all been busy as you can see from some of the snaps pictured here, and we look forward to seeing everybody very soon at Conference and don’t forget to send us your award nominations. patricia.osborne@brittlebone.org
Happy Summer days . . . Patricia
MAY (pictured top right) Launching Wishbone Day with a cheque from pupils at St Andrews Primary School, supported by the Leader of the Council Cllr Ken Guild and Convenor of Education Cllr Stewart Hunter (Cllr Hunter pictured with Mark Ross). Receiving a cheque for £1380 from President of Dundee Bridge Club.
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MAY WISHBONE CELEBRATIONS
Staff, trustees and wellwishers attend HQ and our VIP guests Margaret and David Grant show support at a rainswept wishbone party.
BBS Volunteer UK Support Groups training & planning
regional groups got off to a roaring start – more groups aiming to grow
SCOTLAND
Marcus and Karen launched the Scottish Support Group in January by holding a Burns Supper in Glasgow, on the 27th January with around 35 people in attendance. The afternoon was great fun and there Marcus Donald was even a sing along session with music provided by Marcus on violin and Coreen on Flute. Michele Ferguson from the Scottish Futures foundation attended the event, and kindly offered members tickets to attend a Basketball Match between Glasgow Rocks and the Manchester Giants. A great day out was had by all who attended and our thanks go to Michele for her kind offer.
Steven Hastings meets a basketball star
NORTHERN IRELAND
Vincent held the first meeting at the La Mon Hotel in Belfast at the beginning of February where 10 very keen individuals attended and discussed ideas for future events and Vincent Hunter fundraising. Their second meeting was held in Lisburn in April and planning was full steam ahead for members running in the Belfast Marathon and fun run on the 6th May. (See Wishbone page for more details). The group raised issues of lack of OI services in Northern Ireland; this lead to a meeting with Belfast Health Trust which both Patricia and Vincent attended in June.
WALES
Kat held a meeting in April in Swansea. Members got together for informal chat and coffee at a Leisure Centre, and to sample Kat’s homemade baking. Kat also represented the Charity at the Welsh Assembly for the Kat Watkins Rare Disease Event.
IRELAND
Helen has held two meetings in Ireland, the first in Cork in February and the second in April in Dublin. Both meetings were attended by 20 people who were all happy to get together and discuss relevant issues.
BIRMINGHAM
Helen Lehane
Maureen organised a meeting at the Midlands Art Centre in May where she had 25 people attend. Everyone had great fun getting to know one another, discussing ideas for future venues and events. Members were Maureen Groom full of ideas and hope to hold fundraising events such as sponsored swims, sponsored wheelchair/buggy push and can collections to name a few.
ENGLAND - SOUTH EASTERN REGION We ran a training session for members from Bournemouth, Bedforshire and Hertfordshire areas when we visited this year’s Conference hotel to confirm contractual arrangements. It was a brief session with some interesting points raised. We will advise when we will next be in that area.
Birmingham Support group meeting held in May
Anyone who would like to get involved in any of these groups, or would like more information please contact coreen@brittlebone.org or ring 01382 204446 - we can put you in touch with your Regional Volunteer Support Group Co-ordinator. Watch our website and facebook for updates.
Farewell Theresa – and the BBS SHOP We announce the retirement of much admired Theresa Cannings who managed the charity shop at City Road for 18 years. Theresa is taking life easy and has plans to visit family in Australia. Wishing her sincere best wishes from all in the OI family for her long and devoted years of service to the BBS. We have now sold the shop which was located in a quiet part of town as the state and repair of the shop needed considerable costly refurbishment.
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BBS Fundraising hall of FAME
Lucy Botteril – Northampton Wishbone Day Gala Ball – £4,005
Stevie Simpson – too many events to mention – face painting, zumba, raffles... £4,820.00
Charmaine Cowan – Skydived and raised £470 for the BBS Wokingham Group – STALLS OF SUCCESS £1,000
Caoimhe Laughlin – various events to raise £1,250.29
CAMBRIDGE HALF marathon – £1,174.55 Can collection – Morrisons at St Andrews £930.90,
Karen Ratcliffe – £350 CHARITY PARTY
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Paul Deadman MORROCAN CLIMB – Still hard at work – being selected at Building Society for donations and impressive cakes from Karen Deadman
Richard Toner – £400 TEA PARTY FUNDRAISER
Sheena Moreland TRIBUTES TO SHEENA
We were recently invited to join a prestigious research group for rare disease, and we will proudly take a seat at that table and get our views across to help in the long term goal to learn more from research into OI.
Trustees and staff at the BBS were deeply saddened at the news of Sheena Moreland’s passing.
FUNDING WINS FROM NEW PROJECTS It’s imperative we are creative in expanding how we help people with
We had all been so delighted for Sheena and her family when we heard that she was to receive a Queen’s Award of the British Empire Medal for her services to our Charity, which was to be presented on 15th June. This would have been a fitting and most deserved honour for a woman who gave so much to the BBS over many years. Sheena passed away peacefully on Monday 3rd June, days before she was to have formally received her Queen’s Award. I am certain you will all join with me in offering heartfelt and sincere condolences to her daughter Audrey and husband Graham and beloved grandchildren Jack and Sarah, and all her close family and friends. We will bring a condolence book to mark Sheena’s memory to Conference this year and shall arrange to set up something for those of us online to allow you to pay your many tributes to her. Elaine Healey Chairman of the Brittle Bone Society
OI, of all ages. We have VOICE firmly set, and now Patricia and her staff have secured funding so we can launch our new Cool Bones project for 11-15 year olds at Conference. I urge you to contact me or Patricia with any ideas for projects for other age groups. If we can develop a plan we shall.
FUNDRAISING & AWARENESS I thank you all yet again for your terrific efforts in fundraising since I last updated everybody. Wishbone Day was another runaway success. We are promoting and educating across the country and more and more schools are getting involved. Marathons success despite the awful Boston tragedy, Gala Dinners par excellence, and cake bakes, sky dives and amazing kindness from you all.
HEALTHCARE PROFESSIONALS’ SUPPORT Professor Bishop kindly attended our recent VOICE Event in Belfast which was a great success, and he and all the medics on our MAB and
Note from your Chairman . . . Sheena would expect we carry on with the important work we do at the BBS. We have done a lot since I last wrote.
year’s Conference.
TRUSTEE SUPPORT Trustees are pleased our office has finally had a new database installed and they are planning the installation of a new and long overdue website to help us continually improve our services to you.
PROFILE RAISING I’ve attended numerous events and meetings for the BBS along with Patricia and Trustee and Secretary John Phillips, raising awareness of OI and exploring funding from a number of sources to sustain and develop what we do.
on POINT have kindly worked closely with Patricia to assist with this
John Phillips has continued to offer support to the operational needs of the Society. We have used his firm’s offices Prof Nick Bishop and Elaine Healey at VOICE Northern Ireland.
CONSULTING WITH YOU
in London for a variety of meetings and
John Phillips Secretary to Trustee Board
presentations, and recently for a major meeting with potentially the largest funders we have ever spoken to. We have also enjoyed advice on contractual matters, employment advice and just latterly with the hotel conferencing contract details. The savings through this are immense and it’s important members
Patricia has posted a number of consultation surveys on membership topics for Conference. BBS staff are rushed off their feet doing their best to respond timeously to comment and dialogue on Facebook. We are keeping everyone informed of our progress. I also plan to attend a Conference in June and I thank you all for responding to help me collate the best points possible to deliver to a medical audience.
understand the value of this pro-bono assistance.
INVITING OUR VIEWS
Conference.
The BBS has continued to take part in important consultations and members have recently stepped forward to work on the National Institute of Health and Research committees offering their views and opinions.
Wishing you all a brilliant summer, best wishes,
NEW PROJECTS I am pleased we are launching a much anticipated new membership and supporters drive and we also acknowledge support and input from Trustees Andy Mills and Sam Renke who are assisting with the planning of our new Cool Bones Project being launched at
Elaine 5
VOICE Northern Ireland A group of 17 young people met up at La Mon Hotel, Belfast for our 4th annual VOICE youth event from 12th-14th April 2013. During registration delegates were welcomed with a goodie bag filled with lots of Irish products. The Friday evening played stage to the Brittle Bone Society’s first murder mystery evening, ‘The Last Gasp’. Unfortunately one of the guests didn’t make it to the end of the evening with a dramatic murder taking place during the starter! As the evening unfolded delegates had the opportunity to ask their fellow guests questions to piece together all the evidence. By the end of the evening we had six suspects that were nominated by teams of delegates. Members of the police department later announced the name of the murderer and an arrest was made. One delegate said “The murder mystery was brilliant to talk to people and break the ice.”
Khan and Miriam Somerville from Northern Irish organisation, VOCAL. The organisation works to develop community and voluntary sector projects with the involvement of service users. This was followed by Conor McElmeel of McElmeel Mobility Group who explained to delegates the possible adaptations that can be done to vehicles to suit their individual needs. Professor Nick Bishop of Sheffield University and Children’s Hospital made a special trip to Belfast to talk to delegates about services, treatments and stories around OI. As ever this presentation was gratefully received by all with one member saying “the medical update should be at every VOICE as it’s so important and not everybody has access to this information”.
One to one sessions were available with Physiotherapist, Davina Ford, and Occupational Therapist, Jill Birch, throughout the weekend, giving delegates the opportunity to discuss their concerns privately. Saturday began with a presentation by Mena
Professor Bishop also managed to fit in some one to one sessions with delegates before having to return home to Sheffield. After a short lunch break the buses arrived to transport delegates to the Titanic Museum for a taste of Belfast’s culture and history. This was thoroughly enjoyed by all and staff have been asked to ensure there are trips available at every VOICE event. Following a busy day delegates retired to their rooms to get changed for dinner with a strict dress UP code. Photographer David Queen was on hand to ensure delegates had lasting memories of their NI VOICE. In line with VOICE tradition, the evening ended with a disco where delegates danced the night away.
Mr Jim Shannon MP, Emily her mum and Chairman Elaine Healey
VOICE DELEGATES’ INPUT NEEDED ! A call to help us in our launch of Cool Bones. We are working on a presentation involving VOICE attendees to talk to 11-15 year olds. Get in touch with Rebecca with your ideas about how we can share good ideas, what to avoid, mechanisms for coping with all sorts of situations: pain, friendships, how to handle missed periods from
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school due to fractures; not forgetting all the positives. All the great things that having OI has led you to do in work, the arts, socialising or anything we haven’t thought about. We want the workshops to be well represented by members who have enjoyed attending VOICE and can offer encouragement to our younger age groups. Thank you. (rebecca@brittlebone.org)
So what can BBS money buy . . . We are grateful to all the Trusts and organisations whom we work with and who support our many funding applications. A full list will appear in our forthcoming Annual Review document. This month we wanted to feature just two items which we know have been a big hit with members. Last year’s winning Champion (top) fundraiser for the BBS Cameron Allan and below Robert O’Connell whom we assisted with a table and chair.
DWP E-ZINE Newsletter DWP Update May 2013 The early introduction of Universal Credit has begun in the Greater Manchester and Cheshire area. This is known as a Pathfinder, and it will trial Universal Credit before progressive national roll-out begins in October. DWP are keen to continue to learn from feedback and would ask that those in our organisation who have supported a claimant in making a claim to PIP in northern England share feedback with their local DWP Partnership Manager. From 10 June 2013, claimants across Great Britain aged between16-64 will be able to make a new claim to PIP. Full details are available in the PIP toolkit. http://www.dwp.gov.uk/publications/specialist-guides/pip-toolkit/ Changes to DWP’s appeals process were introduced in April, initially as part of the design of the new benefits Personal Independence Payment and Universal Credit. The changes are mandatory reconsideration, direct lodgement and time limits for appeal responses All live consultations and the latest published responses are available on the consultation pages of the gov.uk.
Newsletters and email addresses! We will be reducing the number of printed newsletters next year, and so we are appealing to our membership to provide and supply the office with current email addresses so that we can update records. This shall also help us with the installation of our new database and records system.
Job done...
MORE THANKS TO FUNDRAISERS . . .
Crabtree Primary School raised £318.38 and as this goes to press sadly we don’t have any pictures to share with you. We received £309 from Andy Mills (Trustee) for growing a beard. Britway Walking club sent us a fantastic donation of £1,236.83 – and Ali Chadwick shed 4 stone in weight and raised £900 again no photos, but we will publish them as soon as we get them. Alan Seasman ran the Sheffield Half Marathon and raised £329.25....
well done everybody. Longridge branch –
John and Gertie Farmery present us with another amazing amount of £1,000
BBS SUPPORT CALL FROM Africa for little Madina Staff at the BBS fully appreciate the remit of our role. We did however receive a plea for help from a British charity worker whilst working out in Africa, about a little girl in a village who was born with OI, but who was unable to get around as her family had been unable to obtain a wheelchair. An old chair from our storeroom was sent on for repairs and at the expense of the other charity and it was despatched to Madina.
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NHS UK Centres of EXCELLENCE The BBS newsletter is pleased to present some information from Birmingham Children’s Hospital, Yorkhill Children’s Hospital in Glasgow and Bristol Children’s Hospital, we will feature more from Sheffield Children’s hospital and GOSH in London in our next newsletter and other NHS centres across the UK.
OI Service, Birmingham Children’s Hospital OI Service, Birmingham Children’s Hospital provide a comprehensive, multidisciplinary service for children with Osteogenesis Imperfecta (OI) with approximately 120 children of whom one third have severe, complex or atypical forms. Our team consists of two metabolic bone consultants (Dr Nick Shaw, Dr Wolfgang Högler), an orthopaedic surgeon (Mr Ed Bache), clinical geneticist, radiologist and includes specialist nurses, physiotherapists, occupational therapists, psychologist, social worker, clinical scientist, radiographer and an OI administrator. We hold clinics three times a month and have an adolescent clinic held in conjunction with an adult bone specialist (Dr Neil Gittoes, University Hospital, Birmingham). We have a combined clinic with our orthopaedic surgeon four times a year. We currently provide outreach clinics in Oxford, and as of this year also in Norwich and Southampton. Contact Details for Birmingham OI team: Kate.hewett@bch.nhs.uk
OIFE news update ...
OIFE’s latest AGM was held from 12th-13th April 2013 in Paris. We sent a full report on our activity at our UK charity over the preceding year.
Strengthening OIFE Many topics were discussed during this event including the collaboration with OIF through research, fundraising and healthcare professionals. OIFE policy was also addressed and a move is being made to develop their organisation specifically by employing a paid member of staff outwith the OI community.
Oife Volunteers The need for more volunteers was also identified and plans have been discussed regarding attracting new volunteers. Additionally, different membership categories are up for discussion and will go to vote in 2014. Ute Wallentin, current OIFE president, was re-elected for a further two years.
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Photos: of Birmingham Children’s Hospital, Dr Nick Shaw (top left) and patients with OI Type III in the Hydrotherapy pool and on a tilt table receiving whole body vibration with the Galileo
New developments & activities Hydrotherapy sessions with our physiotherapists utilising the hydrotherapy pool of a local special school. A Moving on Up group – aimed at children who are moving from primary to secondary school, a family support group run by a former Occupational Therapist, and Coffee mornings once or twice a year on Saturdays to enable families to meet each other, including guest speakers. The use of a Whole Body Vibration Platform (Galileo) on a tilt table in the physiotherapy department as an additional tool to improve mobility and get children back on their feet faster. A research study that assesses the use of whole body vibration at home. A new bone scanner that can detect vertebral fractures, as a very low radiation alternative to X-ray, as well as a forearm scanner to assess bone strength. A credit card sized contact card with contact details of our team to facilitate communication.
OIFE member associations had the opportunity to update others on the work they have been carrying out within their own organisations.
Finland Suggestions have been put forward for 2014, including Finland who will celebrate their 35th anniversary. Member associations were consulted on this with the BBS considering the possibilities of sending our Support Worker and hopefully some of our VOICE delegates to attend the meeting.
Help us support young BBS members to attend foreign business events We will endeavour to locate educational grants funding to supplement the opportunities to help our young adults get the chance to attend and participate. If you would like to help us fund this, then do get in touch with christine@brittlebone.org
Bristol OI Service at The Bristol Royal Hospital for Children In Bristol, the OI Service is based at The Bristol Royal Hospital for Children, part of the University Hospitals Bristol NHS Foundation Trust. Bristol is a national OI centre for care of children with Severe or Complex Osteogenesis Imperfecta, and has a long history of providing care to children with Dr Christine Burren OI who live in Bristol and across the South West. Children and young people with OI receive a level of care tailored to their condition. The Bristol team provides a service for all children with OI. Children with severe, complex or atypical (unusual) OI usually need quite intensive input at different times, whereas those with milder brittle bone disease attend clinic less OI Family Day often. Children with OI are mainly seen in the Bristol OI clinic (two clinics per month), with outreach clinics in Exeter and Truro, with additional clinics planned across the South West. The therapists and nurse specialist undertake home, nursery and school visits as necessary. The overall intention is that children’s care is as locally based as possible. The Bristol Childhood Complex Osteogenesis Imperfecta Service brings together a broad range of skills in medical, surgical, nursing and therapy. The team is led by Dr Christine Burren, and has specialists in endocrine metabolic bone disease, rheumatology, orthopaedic
surgery, genetics, physiotherapy, occupational therapy, specialised nursing, psychology, with links to an adult rheumatologist for transitional care for young adults. Families are involved in designing and shaping the service and the resources they need. A successful Family Day was held over the winter and then a Coffee Morning over half term, which the families found very useful. Members of the OI team are active in research to improve the care Bristol Royal Hospital for Children of children. This includes being part of a recent trial 0117 342 0588 looking at newer Dr Christine Burren Bone and Endocrine bisphosphonates in Dr John Barton Bone and Endocrine OI, and a paediatric Dr Sarah Smithson Genetics osteoporosis study. Dr Jacqui Clinch Rheumatology Members are Dr Simon Thomas Orthopaedics involved in the Liz Thomas Nurse Specialist Paediatric Western Dr Vanessa Garratt Psychology Comprehensive Dee Pullen Physiotherapy Research Network Emma Lucks OT and the new Bristol Dr Rebecca John Dental Biomedical Research Dr Shane Clarke Adult Care Unit.
Combined OI Team:
The Glasgow Combined Bone Clinic For Children (Glasgow CBC) The Glasgow CBC started in 2000 at the Royal Hospital for Sick Children, Yorkhill and manages children with complex bone conditions through twice-monthly dedicated MDT clinics as well as through a network of centres across Scotland. Children attending Glasgow CBC benefit from the close proximity and liaison with Prof Ahmed orthopaedic, dental, pain relief and orthotic clinics in addition to access to national services such as the spinal deformity & maxillofacial services and other specialist paediatric services including respiratory, neurology and neurosurgery. The Bone Densitometry Service The Bone Densitometry Service, managed by Dr Sheila Shepherd, PhD, provides a dedicated service for children and provides analytical support to surrounding regions. It has access to DXA for routine clinical indications and also has access to other modalities including pQCT, QUS and MRI. Links with other centres in Scotland Mr Rod Duncan The Glasgow CBC has links with all children’s centres in Scotland but most of the care is managed locally with very occasional visits to Glasgow. 6-monthly joint clinics are held in Aberdeen with the local clinicians. Monthly videoconference is held between Glasgow and Edinburgh. Glasgow CBC operates a transition programme, working with young people before their transfer to the adult metabolic bone
team at the Southern General Hospital in Glasgow. Links To Patients The Glasgow CBC has strong links with the National Osteoporosis Society, Brittle Bone Society (BBS) and Short Stature Scotland. Prof Ahmed and Mr Duncan are medical advisors to BBS. Ms Liz Dougan (OT) works closely with the groups developing the service to patients and patient support Liz Dougan networks. Professional Education & Training Glasgow is one of a handful of centres in the UK which provides comprehensive clinical training in complex disorders of metabolic bone health. The service held an education day for professionals in Prof Faisal Ahmed Bone & Endocrinology 2009 and in 2011 Dr Esther Kinning Genetics and holds regular Liz Dougan Occupational Therapy education events for Dr Helen McDevitt Bone & Neonatology parents and patients Mr Rod Duncan Orthopaedics Research & Audit Maggie Lang Physiotherapy The GCBC has a Dr Guftar Shaikh Bone & Endocrinology strong interest in Jill Morrison Endocrine team dietitian bone related research Vicky Fisher Endocrine team nurse and has an active Ethel McNeill Endocrine team nurse programme of audit.
Combined Bone Team Staff
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Wishbone Day 2013
Alisha Ali BAKING CAKES
Holly Mahood and mum Justine – BELFAST
Coffey Family from LEICESTER
Coffey Family —GARDEN PARTY 12
Cheryl Beattie BELFAST FUN RUN
St Andrews RC and Craigowl – DUNDEE
Angie Mills – IF THE SHOE FITS . . .
Cameron Allen – YUMMY CAKES
Gordon Family – CUMBERLAND HOSPITAL
Fran Green’s family day in Harborough – FAMILY FUN King Family – ARTWORK & CAKES Dorrie Pickering at CAMPING COURT VALLEE IN FRANCE
Helen Lehane – CORK FAMILY SUPPORT GROUP
Elaine Corkery’s BAKE SALE Wishbone Gala Ball Northampton – GLAMOUR AND GLITZ (congrats Dan & Marie)
O’Brien family – SPECIALITY CAKES
Jacky Boyd, Family & Friends – BALLOON LIFT OFF 13
London MARATHON update. . .
“The euphoria of crossing the finish line was amazing after all the training in the freezing conditions. Would I go through it again? Maybe”... “I wouldn’t have wanted to do it for any other charity!”
Three amazing guys... One incredible event and heartfelt tributes for strict training regime, the rigours of perhaps one of the most difficult marathon races there are, gratitude as they fundraised and raised awareness for the BBS.
Grant Cooper raised £1,457.25 and here he is pictured – at the finish line
Hayden Vincent and Oliver Zissman completing their marathon run – £5,329.94 raised for the BBS
The Brittle Bone Society is proud to present the marvellous people who took on the challenge and completed the toughest marathon of them all, the London Marathon. Thank you guys from everybody at the BBS. We caught up with the runners soon after their wonderful triumph and this is what they had to say:
Oliver Zissman I didn’t have my camera, but I know Hayden sent through some photos of us, well me looking like I am about to collapse! It was a contrasting day as I didn’t enjoy the running part of it at all, but the crowd were pretty amazing. It’s a very simple answer as to whether or not I will be running another one. Begins with N and ends in O. I have been there, done it, got the medal, raised lots of money for a great cause, but will not be repeating in this life time. I wouldn’t have wanted to do it for any other charity and I am sure the money raised will be put towards something great. I know there are friends who have yet to donate, so hopeful of the amount going up further.
Grant Cooper I had a fantastic day by far one of the most hardest but most memorable days I have had to date and it was great to be representing the BBS, the crowds were massive and a great boost whilst running along, luckily the weather was quite kind to us and the heat didn’t really kick in till about 3 hours in to running but even then it was manageable, I think my favourite part of the race apart from crossing the finishing line has to be when crossing Tower Bridge what a feeling that was what with the crowds shouting, being part of the 2013 London Marathon and the views, can truly say it was a breath taking moment and one I will treasure for a long time to come. The back of my right leg started to twinge at around the 17/18 mile mark and resulted in me having to slow my pace which was unfortunate as I was on for a quicker finish time and then as the saying goes at 20 miles “I HIT THE BRICK WALL”, at this point I could really start to feel the ground beneath my feet, it was as though my right sole was having a twenty round boxing match with Mike
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From all of us
THANK YOU ...
Tyson representing the ground, from 20 miles to 21 I had no other option than to have to walk and there was no way I wasn’t going to cross that finish line even it meant me crawling. I got to 21 and managed to bring myself up to a slow jog again by this time I could feel the pain settling in to not only my legs but my upper body too and still feeling like I was constantly running in to that “BRICK WALL”. I’m sure that some people were walking faster than I could run, but at 22 miles I came back down to a walk. The good thing was, that the crowds were still cheering and screaming which again was a great boost, it was great to see the public in a good light which sometimes with my occupation doesn’t always happen. I met Gareth, James and Dad at the 23 mile mark and spoke with them for a few minutes which was a good boost with their words of encouragement and their faces beaming with pride and although the finish line was still 3 miles off, the pain was well I was in pain, 3 miles seemed like nothing. I’m not too sure how long it took me to do the last 3 having chosen to walk it felt like no time at all by the time the finish line was in sight and I even managed a running finish, which was a great feeling and having that medal put round my neck was a great sense of achievement. For the first two days after could barely walk and was shocked to find that most of my pain was coming from the soles of my feet but I guess you should expect that having pounded them for 26.2 miles. On a truly honest note the pain sweat and tears was well worth it knowing that I had completed the marathon and all for a very very very worthwhile cause that has helped and supported my family for the last 30 odd years, and I would do it all over again only next time with a bit more training and perhaps less loo stops.
Hayden Vincent The day was great - the crowds really cheered us on, the sun was out (a little too hot). Oli and I both completed it, I lost a toe nail 16 miles in and was in unbelievable pain so after a pit stop with the St Johns Ambulance I was off again all bandaged up. I was able to see Katie and the kids twice, once at 11 miles and the other at around 22 miles; this was amazing and really kept me going. The euphoria of crossing the finish line was amazing after all the training in the freezing conditions. Would I go through it again? Maybe.
Support, POINT & China... Rebecca Bramhall Support Worker at the BBS
Fair to say the majority of BBS interaction with the POINT team over the past few months has centred on finalising the detail of BBS factsheets. Our next meeting is 1st July and will be held in Bristol. I have worked with Coreen on developing the outreach volunteer groups and assisted with training sessions, and recently I had the chance to travel to China to work in a Foster home assisting children who have OI. I will be pleased to update everybody on my return from this trip of a lifetime, paid for by my parents. I managed to do a little fundraising for a donation and am so pleased I can contribute to the running of such a worthwhile organisation. We have had a busy few months with support calls and have totalled 112 enquiries not including Facebook replies. Staff are delighted to finally have our new database and complete the factsheets—so we can provide even better support services for members.
Healthcare research reviewing – make your voice count
An article provided by (Research Information and Communications) National Institute for Health Research Central Reviews from members of the public, service users, patients and carers play an influential role in the funding of health and social care research projects for the National Institute for Health Research (NIHR). Patient and Public Involvement (PPI) is fundamental to all stages of NIHR research. What patients and public think about the research that is being developed for funding is an essential part of our reviews process. This is what one of our reviewers said: “I have been a reviewer for a number of years now. The experience has been invaluable for me as someone who is in close touch with the community and their concerns, in that it has clearly demonstrated the robust nature of the application process, and how individuals with a unique perspective can genuinely add to the research assessment process. It is essential that research is grounded in real world issues and problems, and reviewing ensures that this approach continues. I have enjoyed my time as a reviewer and would sincerely recommend that anyone interested in research who is willing to share their experience and a small amount of time should take part.” Jay McNeil, reviewer for Research for Patient Benefit, Policy Research Programme The programmes we manage funding for are all directed to patient and public benefit either by encouraging good research ideas and projects or by providing funding for larger programmes that link projects together around a single theme such as diabetes or stroke or focus on rare disease research. In the NIHR we are looking for an independent review, that is, not as a member of a particular society or group but as an independent and critical patient/public voice. In the past two years we have also asked for reviewers from specific interest groups to come forward and help us gain that special perspective. NIHR needs reviewers from the patient/public community who have relevant experience either as a patient, carer or family member. This experience is valuable to us in the two ways outlined below.
Lived experience: helps the committee of assessors understand the disease area from the point of view of the patient and helps the committee see what burden the research team are placing on the patients they are enrolling in their study. John Walsh, sub-panel member (PPI) reviewer for Programme Grants for Applied Research says, “There is certainly a lot of job satisfaction from feeling that you have influenced the way decisions have gone, to the benefit of patients and the public. I’ve been very pleased to find that we are allowed – even expected – to comment on any aspect of proposals about which we happen to know something, or feel strongly: this is a good example of the ‘public’ part of Patient and Public Involvement (PPI).” Patient and public involvement in the study: The other task when you read the application through as a reviewer is to see what the research team are planning in order to involve patients and the public in the conduct and management of their study. Have they approached relevant organisations? Have they consulted with people who have experience of managing their condition? Are they involving patients and the public in the stages of their work, for example as members of a steering group or lay panel? Importantly, have they provided support for these contributors in their budget request? All the clues are there in the application itself as we expect the research team to describe all these aspects to us as well as explaining what they hope to achieve as scientists.
Contact us Please do contact us if you would like to develop this skill with our help. Your voice as a public/patient reviewer will be a great assistance to the NIHR programmes and also to the community of researchers and their patients. To register your interest as a reviewer, please email: liz.scott@nihr-ccf.org.uk. See—getting going as a research reviewer: http://www.ccf.nihr.ac.uk/PPI/Pages/Peer
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Members & Supporters drive
COOL BONES LAUNCH
Our membership fee has been unchanged for 25 years. We want as many people as possible to be involved with our Society whether or not they are affected by OI. We are therefore going to change the membership fee structure and introduce a new type of commitment to the Charity that does not involve membership. Under our Constitution, membership gives the right to attend and vote at the AGM and allows discounts in respect of events such as our Annual Conference and VOICE. Members that have attended Conference may have taken part in consultations with many of the professionals and other advisers that we gather there on your behalf. Membership is also a pre-condition of receiving financial assistance towards wheelchairs and equipment. Members also receive regular newsletters and are kept up to date with current developments relating to OI. Membership should also be a means of funding the Society’s activities. We currently operate two membership fees - £1 a year for concessions, which includes those who have OI and £10 a year for everyone else. We also have a life membership category for which there is a one off payment of £75. It costs the Society much more than £1 to collect and administer each concession fee. If all members encouraged The Trustee Board has therefore concluded 3 people to support us that the concession fee of £1 a year is by donating £10 a year unsustainable and we have for some time that would total £25,000 per year. been considering an increase to reflect the passing of time, the benefits described above and the need for the Society to raise funds to carry out its work. We propose to simplify our membership fee structure with a single membership fee of £20 per year per person. The Society will continue to respect life memberships that have previously been entered into, even though they are not provided for in our Constitution. The changes to membership fees will take effect from January 2014. We appreciate that this is a significant increase but hope that all members will decide to renew membership. When making your decision, please remember the benefits that membership will provide to the Society and the importance of our having as strong a membership base as possible. We also need to raise funds from supporters who do not wish to become members. To date, the only formal way in which we have been able to acknowledge an individual’s desire to be formally connected to the Society has been through membership. We have therefore decided to create a new category of involvement with the Society - the “Supporter”. “Supporters” will be individuals who wish to be connected to the Society and to make a financial contribution but do not feel the need to have a vote at our AGM. “Supporters” will receive the Society’s newsletter and other information updates. Children with OI are not eligible to become members because our Constitution requires a member to be 18 or over. We therefore propose that under 18s with OI who wish to become involved with Cool Bones or VOICE, will be asked to become “Supporters”. The status of “Supporter” will bring with it a discount to those events and to attendance at Conference. Other Supporters may be family members of people with OI or other people with no connection to OI who just want to help. We propose that the minimum annual contribution for a “Supporter” will be £10 per annum but each “Supporter” will be invited to give more. Our current Life Members who enjoy the benefits of membership but have no further contribution obligations to the Society will also be asked if they would like to become “Supporters”. Subscriptions to the Society through being a Member or a Supporter will help to fund the work that we do, assist in raising awareness of the condition and allow campaigning for a greater understanding of OI. We currently have 850 members and this currently brings in a total annual revenue to the Society of £3,000. If all of those members continue their membership at the new annual fee and encourage three people to become Supporters at £10 a year, that would raise a total of £25,000 a year for the Charity.
Preparation for LIFE’S JOURNEY This year at Conference we will have a section for youngsters aged 11-15years.
MEMBERSHIP DRIVE
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We’re calling it Cool Bones and it’s aimed at those too old to appreciate the crèche facilities and not quite old enough yet to get involved in all things VOICE related. Child psychologists will give a presentation and we also hope to foster discussions on how siblings and others in the family network Coreen Kelday can learn how best to live with some of Office Co-ordinator the challenges that having OI can bring. Workshops will also include talks from young people who can explain to youngsters how they deal with OI and how successful they have been in their chosen career and life path. Our new Cool Bones member package involves 11-15 year olds taking control of their news pages online through the charity, to help them learn useful tips and hints for the journey ahead. We will tailor more sections at events to cater for this age group with talks planned at young 11-15 year olds and their siblings.
Important Notice As this copy goes to press we would like to say thanks to all BBS fundraisers, if we have omitted any of our fundraising stars from this issue, or their items have not yet been finalised or sent into to us, we will be delighted to feature them in the next newsletter. Please contact Christine at chris@brittlebone.org or phone 01382 204446 if you would like a fundraising pack full of lots of ideas on how you can fundraise on any of the above events. And remember to let us know about your fundraising events and we will promote them for you on the BBS website www.brittlebone.org, Facebook and Twitter.
CREDITS Editor
Patricia Osborne | patricia.osborne@brittlebone.org
Fundraising
Christine Hope | chris@brittlebone.org
Support
Rebecca Bramhall | rebecca@brittlebone.org
Sub Editor
Harry Venet, Trustee
Editorial Assistance
Coreen Kelday | coreen@brittlebone.org Annette McIntyre | annette@brittlebone.org
General Enquires
Tel: 01382 204446 | bbs@brittlebone.org
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