The Gareth Cumming Adventure Memorial Award

Brittle Bone Society are delighted to be able to launch this new award in the name of our late Trustee, Mr Gareth Cumming.

Applications will close 5^th May 2023.

The winner will be announced approximately 4 weeks after.

We invite applicants from the UK and Ireland who have OI, are aged 18 or over, and want to experience something new to apply for up to £1000.

Perhaps you want to travel independently, visit a new location, meet people or learn something new ie attend a training course. Having OI may put hurdles in your way, however, Gareth would have said: ‘nothing is impossible’.

Gareth’s Memorial Award is designed to assist with overcoming some of the challenges encountered along the way. This grant may offer a boost of confidence and make a positive difference on your journey. The Gareth Memorial award is intended to help you take that first step.

About Gareth

Gareth Cumming loved adventure, new experiences, laughter, sunshine and especially travel. He filled a room with his smile and massive personality, he loved people and had unconditional love for his OI family.  Gareth valued his independence and loved hearing stories of members of his OI family being resilient, confident and following their dreams.

You can download the Application Form Here.

School of Dentistry, Dundee University Visit.

Brittle Bone Society staff and members were invited to the School of Dentistry at the University of Dundee on Wednesday 26^th Feb. Joining them were a group of members of the BBS to take a tour of the teaching facility.

We were warmly welcomed and greeted by the organiser of our visit, Niall McGoldrick, Clinical Lecturer and Honorary Consultant and Dr Heather Cassie at the facility along with other key staff for a whistle stop tour.

We began with a health and safety briefing and some housekeeping. We split into two groups and first visited their research floor. We were shown various posters of current research programmes on oral health and had the opportunity to speak to a group of researchers about their work. We also got the opportunity to discuss our own work in Research at the BBS.

Then we took a tour of the forensics lab, this was fascinating. The staff showed the group state of art equipment used for a variety of services and what the technology can help achieve.

We visited the restorative clinic where we saw members of the dental hospital team hard at work, with rows of cubicles where patients are treated, sometimes to undergo very specialised root canal work, having been referred to the hospital by own primary care dental practitioner.

Our final visit was to the Optec Department, where students get the opportunity to trial their skills on phantom heads. This provides an efficient way to teach pre-clinical students dental procedures safely while increasing their dexterity skills.

Finally we stopped for a lovely lunch and informal chat. We were introduced to Professor Jan Clarkson , Professor of Clinical Effectiveness, Associate Dean for Research and Co-Director of the Dental Health Services Research Unit at the School of Dentistry, University of Dundee. Jan is also Director of Effective Dental Practice Programme within NHS Education for Scotland (NES) and is a founding member of the Cochrane Oral Health Group. Her remit is to conduct high quality research and promote the implementation of research evidence in dental primary care. Her research has included several clinical trials involving over 300 dentists and 10,000 patients. Jan is currently Director of the Scottish Clinical Effectiveness Programme who are responsible for the production of national dental guidance in Scotland.

We then rounded up the day with a chat about living with OI, the challenges that our members encountered with their oral health – and discussed ways of sharing useful information. We were informed that the Department are tasked with producing guidelines on care and in particular relation to Bisphosphonates – which of course is of special interest to the OI community.

We are grateful for the staff taking such a keen interest in OI and our work, and it is hoped that we can plan a more in-depth date with them to have members discuss what types of research might benefit the OI community going forward.

RIP Helen

We are very sad to announce that Helen Chappell has passed away very suddenly aged 49.

Helen was a much loved member of the OI community.

Helen was involved with the Brittle Bone Society since a very young child and featured, aged just 5, in the famous Magpie TV film when the charity won tremendous support for equipment from the Children’s TV Show.

Helen  held the post of trustee of the Brittle Bone Society in 2012 and served the Charity in a number of activities and was also one of the original young people who pioneered vOIce.

Helen Chappell was a proud Yorkshire lass and lived in Leeds.  She was keenly involved in Leeds Powerchair Football.

Helen was a warm and friendly person and just delighted in training her lovely new dog Barney.

Everyone who knew Helen will be shaken by this news. She will be sadly missed. Rest in peace Helen.

Celebration of Life: Details To Join Virtually

Name: Helen Chappell

Location: Pontefract Crematorium – Default Chapel

Date & Time: Wednesday 01/02/2023 14:20

Requester: Peta Stevens – Love & Stevens

Use the PIN number below to access your webcast:

Webcast Login PIN: 887-9946

JOIN HERE

Webcast Viewing Instructions are available here.

This event saw around 350 leading healthcare experts working in the field of Osteogenesis Imperfecta from around the globe transcend on Sheffield for this 4 day conference.  This International Conference takes place every 3 years and should have taken place in 2020, but was postponed due to the Covid Pandemic.

The Brittle Bone Society Team were delighted to be able to attend. CEO, Patricia Osborne shared a platform with Ingunn Westerheim, President of OIFE and CEO Tracy Hart from OIF.  All three gave an overview of the work of patient organisations and provided updates on their organisations. We also heard updates on the importance of the Impact Survey.  The BBS were also able to display their History Bones Popups as well as hosting an information stand.

Highlights

Day 1: we heard talks from Allied Healthcare Professionals from Sheffield and Bristol covering topics such as early life interventions, play and involvement with caregivers. The BBS also attended talks on registries, diagnostic pathways, gene therapy and more.

Day2: the morning session focused on Wellbeing in OI and included talks from Dr Rebecca Jones from Sheffield who discussed psychological well-being in children and young people. We also had a talk from Davina Ford and Dr Jennie Walsh who gave an overview of the Sheffield Transition process into Adult Services and Dr Ruth Kingshott shared resources on sleep.

Our CEO, Patricia met Dr Wolfgang Hogler, formerly of Birmingham Children’s Hospital, now working in Linz Austria. Dr Hogler was speaking to fellow clinicians about mutations, bone fragility and muscular hypotonia. We also heard talks from our MAB member Dr Meena Balasubramanian (Sheffield) who was covering bone, brain and beyond. Other talks included, surgery, post-surgery rehabilitation, cellular/tissue pathophysiology and more.

Day3: we attended the bench to bedside section; this was a session sharing updates on early phase studies through to integrated care. The holistic approach was delivered by Dr Paul Arundel (Sheffield). We also heard talks from Outi Maktie Helsinki on clinical management of rare bone diseases as well as lessons and synergies across diseases.

Day 4: There was a session of oral communications which consisted of short 10-minute presentations and an interesting overview of surgical management of skeletal dysplasia from Tae-Joon Cho (Seoul, Republic of Korea). We also heard an amazing talk from surgeon Mr Paul W Esposito USA, who was hugely respectful of the knowledge he gained from Sheffield in the treatment of OI. He also had huge respect for mums of OI children whom he said drove surgeons like him to do his best, and safely! This amazing surgeon who is set to retire from the orthopaedic world was given huge praise for his services to the OI Community!

There were also interesting updates on current and future research trials.  We heard about the latest news on Setrusumab and Topaz Trials.

Poster Presentations

Support Development Officer, Coreen Kelday was on hand to discuss the BBS Poster on Clinical Care during the Covid Pandemic and received good interest.

Sophie Barlow, Physiotherapist from the Royal National Orthopaedic Hospital, Stanmore was presenting a poster in relation to the BBS funded research project on percieved therapy needs of adults living with OI.

Chloe Morgan, Phd Student from Swansea University was sharing her BBS supported research project investigating the transition from paediatric to adult services.

Keynote Address

We also must mention we got the chance to see the magnificent Sheffield Cathedral where Lord Shinkwin delivered the keynote address.  You can watch Lord Shinkwin’s talk here.

The week was extremely beneficial in terms of learning and collaboration for both Healthcare Professionals and Patient Groups. A huge thank you to Professor Nick Bishop and the team at Sheffield for organising the incredible conference.

We were delighted to make contact with the local dental teaching hospital.  They invited us to give a presentation to master students, on the 23rd November,  about dental issues for people living with Osteogenesis Imperfecta and to look at possible research opportunities. CEO Patricia Osborne, Coreen Kelday, Support Development Officer and former Trustee and supporter Mark Ross gave a presentation about the work of the BBS and focussed on oral health concerns.

The Dental School have also asked us to talk at an online webinar which will take place in February 2023 (details to follow).

We have been liaisng with Dr Susan Parekh (Dentist) who serves on our MAB and together we will all be collaborating on important surveys for both children and adults.

We will be organising a visit to the Dundee Dental School and will share details soon if anybody would like to attend.

The Brittle Bone Society, Interloch Community Transport and Sheppey Matters are the first charities to be awarded funding from Motability’s portfolio of grant programmes specifically set up for other charities and organisations who support the transport needs of disabled people.

The new funding will buy wheelchairs and wheelchair accessories for the OI Community. Patricia Osborne, BBS CEO, said: “This amazing grant from Motability means we can get the right wheelchairs for individuals almost immediately! Our previous process worked, and we cannot thank all those Trusts enough, whom we worked with over many years to do that. However, the size of this Motability grant means we no longer need to apply to several Grant Givers for each individual application, while people waited for those last portions of funding to come through. This will radically speed up the process meaning they won’t have to wait.”

We are excited to work with Motability and continue to provide the right equipment and wheelchairs to the OI Community.

If you are needing equipment or a new wheelchair, you can find out how you can apply for a grant here.

OI International Scientific Conference 2022

During this years OI International Scientific Conference, held in Sheffield, Lord Shinkwin delivered the keynote speech. The BBS are delighted to be able to share this fantastic speech which was delivered at Sheffield Cathedral.

You can watch the full speech here.  

We also have the transcript of the speech which you can download here: Lord Shinkwin Keynote Speech OI2022.

Touch a Life Award- University of Dundee

The BBS are proud to be sponsoring the “Touch a Life Award” for a nursing student in memory of the Late Dr Margaret Grant MBE.

This award aims to recognise a nursing student who demonstrates the heart of nursing through the impact they have on either an individual, a family or a community.

Trustees and staff are grateful to have the chance to remember our late founding member by recognising the work of hard-working individuals in the nursing profession!

Margaret Grant would approve a lasting legacy in a profession she cared about here in Dundee – the city of her birth and at the seat of learning at the School of Health Sciences, University of Dundee.  The University who so kindly bestowed her honorary doctorate.

This award will be complimentary to the Charity’s Research Grants Allocation which is open to all in the specialised field of OI.

Nominations were submitted in October and the Winner was announced on the 18^th November 2022.

Trustee Yvonne Grant attended to present our very first of this special award to Nurse Rhian Jones, the 2022 Winner. Also attending the event were Charity CEO Patricia Osborne and Trustee Prof Margaret Smith, the former Dean of the Health Sciences School at Dundee University. Charity Chairman Elaine Healy said, she was “simply thrilled that we have finally put this in place”. Margaret’s name is truly living on and being remembered well!

Cost of Living Payment

The UK Government have introduced this scheme to support households across the UK who are struggling financially to cover the rise of cost of living.

You may be able to get payments to help with the cost of living if you’re getting certain benefits or tax credits.  These payments will help with things like food, energy at home and fuel.

Guidance on getting extra payments to help with the cost of living, if you’re entitled to certain benefits or tax credits,  can be found on the government website: https://www.gov.uk/guidance/cost-of-living-payment

If you live in Ireland see here: https://www.citizensinformation.ie/en/money_and_tax/cost_of_living/help_with_cost_of_living.html

You do not need to apply, you will be paid automatically

If you’re eligible, you’ll be paid automatically in the same way you usually get your benefit or tax credits. This includes if you’re found to be eligible for a Cost of Living Payment or a Disability Cost of Living Payment at a later date.

You could get up to 3 different types of payment depending on your circumstances on a particular date or during a particular period

Cost of Living Payment

For low-income benefits including Pension Credit, you should have already had your first payment of £326 by the end of July 2022.

The government has said households receiving DWP benefits will receive the second part of the £650 Cost of Living Payment from 8 November to 23 November.  You can read more about this here.

£150 Disability Cost of Living Payment

Around six million people across the UK who receive disability benefits to receive a one-off payment of £150.

You’ll be paid the £150 Disability Cost of Living Payment automatically from 20 September 2022. Most people will receive their payment by the beginning of October 2022.

For more info on Cost of Living payments you can download this is to read document here.

If your payment does not arrive

Check your bank statement for a payment called ‘DWP Cost of Living’.
If you do not get a payment complete this form: https://secure.dwp.gov.uk/report-a-missing-cost-of-living-payment/welcome

Getting the Energy Bills Support Scheme discount

The Energy Bills Support Scheme provides a £400 non-repayable discount to eligible households to help with their energy bills over winter 2022 to 2023.  All households with a domestic electricity connection in England, Scotland and Wales are eligible for the discount.

How it will be paid:

– Direct debit and credit customers will have the money credited to their energy account.
– Customers with pre-payment meters will have the money applied to their meter or be paid via a voucher.

You can find out more about this scheme here.

Priority Services Register (Energy)

You can sign up to a Priority Services Register (PSR) to receive extra help from your energy or water company. It’s free to sign up.

If you are over 66, ill or disabled, or have children living at home, ask your energy company if you can be added to their Priority Services Register.

This provides you with free extra services and may help protect you from disconnection if you struggle to pay your energy bills if your supplier has signed up to the Vulnerability Commitment.

You can find out more here

Other useful resources for support with Energy

Energy Costs if you live in Scotland

Welsh Government’s Fuel Support Scheme (Wales)

Cold Weather payments Northern Ireland

Information for the Republic of Ireland

Other Benefits and Financial Support

Please see our Financial support and benefits page for other benefits you may be entitled to.

Role

The successful candidate will have a good knowledge of general office procedures, excellent IT and literacy skills, and the ability to accurately manage databases and spreadsheets.

This is a full-time post, however part-time hours may be considered.

Downloads

Job Description

Application Form

Equal Opportunities Form

Closing Date: Friday 11th November