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Updates on Covid19

  • Posted on Mar 25, 2020

Update 07.07.2020

UK Government Shielding Restrictions

For the latest UK Government updates regarding shielding for children, please click here>>

For COVID19 guidance on shielding and protecting people defined on medical grounds as extremely vulnerable, please click here>>

Update 23.06.2020

Brittle Bone Society Medical Advisory Board Update on Covid19 Shielding Relaxation

We understand the guidance on Shielding will change on 6 July and again on 1 August subject to clinical evidence. We recognise this decision affecting people in England will be stressful for many individuals, especially as researchers are still looking for better treatments and a vaccine for COVID19.

We know the NHS is working hard to make available a “risk score questionnaire” that will give people a better understanding of their own risks and benefits from continuing to shield. We understand that this “risk score” is planned to be released soon.

We at the BBS alongside other rare bone condition patient groups are working to ensure that this risk score is good enough for individuals with OI and their families. In the meantime, we need to wait for more information from the NHS in England, Wales, Northern Ireland and Scotland.

For more information, please click here>>.

Update 29.05.2020

On 28 May 2020, Professor Nick Bishop, Dr Kassim Javaid, and Dr Rebecca Jones answered questions from the OI community regarding the relaxation of COVID19 restrictions.

Additionally, for further guidance from Public Health England on shielding and protecting people who are clinically extremely vulnerable from COVID19, please click here>>.

For information about supporting children and young people with SEND as schools and colleges prepare for wider opening, please click here>>.

Update 23.04.2020

Please note, the NHS has responded to concerns raised by patient groups, such as the Brittle Bone Society, regarding the implementation of their rapid COVID19 critical care guidelines. For a further summary, please click here>>.

The Brittle Bone Society was also invited, by the Royal College of Paediatricians to participate in a consultation on ‘Ethics framework for use in acute paediatric settings during COVID-19 pandemic’. To read the report, please click here>>.

Additionally, for access to the Public Health England Mental Health Guidelines, please click here>>.

Update 16.04.2020

For those members of the UK’s OI community who live in Scotland, and who do not have family or access to community support, a new helpline has been established. For more information, please click here>>.

Update 09.04.2020

On 9 April 2020, Professor Nick Bishop, Interim Chair of the BBS Scientific Advisory Board, and Dr Kassim Javaid, Chair of the BBS Medical Advisory Board, answered questions from the OI community regarding the COVID19 Virus.

Update 25.03.2020

COVID19 update for people with rare bone disorders.

Some of you may have received letters about being someone who’s extremely vulnerable to coronavirus.

OI does not affect the immune system. We recognise that some people with OI may be extremely vulnerable and not included in the list. These includes people with severe spinal curvature, also known as kyphosis or scoliosis, or abnormal chest wall shape that increases the risk of lung problems.

These people are included in the NHS guidance for extremely vulnerable group because they:

“have a severe respiratory condition – including cystic fibrosis, severe asthma or severe COPD (Chronic Obstructive Pulmonary Disease)”

This includes:

– all people with type III OI and other severe forms of OI

– any other person with a rare bone disease who:

1) those with abnormal chest shape or breathing problems that has required medical attention

2) need breathing / respiratory support

3) have been advised to have the pneumonia vaccine because of their rare bone disease

4) has been told by their specialist centre they have severe spinal curvature

If you have not had a letter and think you fit into one of these categories please visit to register for support and help during the pandemic.

You should select: Yes, I have a medical condition that makes me extremely vulnerable to coronavirus and then follow all the online advice as much as possible.

For other people with other types of OI, please keep checking the NHS website as guidance is changing very quickly.

Stay safe and best wishes during these troubling times.

Medical Advisory Board.

If you are a resident of the Republic of Ireland, please click here>> for up-to-date information.