Menu Close

Latest News and Updates

Update 30/11/21

In light of recent developments surrounding the Omicron variant, please see latest update on JCVI’s recommendations on extending booster jabs – including a fourth jab to the clinically vulnerable.

Update 12/10/21 

The Royal College of Paediatrics and Child Health (RCPCH) has released a statement in response to the COVID-19 vaccination to all 12–15-year-olds. Our Trustee Prof Nick Bishop is also Vice President for Science and Research at RCPCH. You can read the statement by clicking here.>>

Medical Advisory Board statement as at 14.07.21

We know the expected removal of restrictions on the 19th July is causing concern for many families with OI. The NHS and Public Health England have updated guidance for extremely vulnerable people after the 19th July.  Individuals with severe OI (type III/IV) may fit into this extremely vulnerable group because of their limited chest size. The updated guidance includes information on who will be prioritised for a booster vaccination as well as rules around the workplace. Do read the information about protecting vulnerable workers although this is mainly focused on having conversations and working from home than specific actions for workplace changes.  There is also a good reminder of the Access to Work Scheme that can provide additional support at work and getting to and from work.

Update 13/07/21

The Department of Health and Social Care has issued new guidance for the clinically extremely vulnerable in line with yesterday’s announcement by the Prime Minister on the easement of coronavirus restrictions.

The guidance, which comes into effect on Monday 19 July, advises that the clinically extremely vulnerable follow the same guidance that applies to the rest of the population during stage four of coronavirus unlocking, and to consider additional precautions to avoid catching the virus amid anticipated high levels of circulation within the general population.

For the latest updates in Scotland please see here

We are aware there may be concerns from members. As always, if you have any questions please don’t hesitate to get in touch.

Update 13/04/21

If you are over 45 you can now book an appointment for a vaccination. For more details please click here:

Update 24/02/21

Medical Advisory Board statement

The Brittle Bone Society Medical Advisory Board have written a statement regarding
“Which individuals with Osteogenesis Imperfecta need to be prioritised for COVID-19 vaccination”.
You can download the statement here COVID-Statement-.pdf

Update 18/03/21

The government is writing to the 3.79 million clinically extremely vulnerable people currently shielding to inform them that they are no longer advised to shield from Thursday 1 April.

Update 05/03/21

If you have Scoliosis you can find further information on the Scoliosis Association website

If you have Asthma you can find further information on the Asthma UK website

You can also find other useful information on Scope website

Update 16.02.21

Government expands Shielded Patient List.  For the lastest guidance, click here

You can also find more useful information about the Shielded Patient List on NHS Digital

Personal Assistant in England can now access Covid-19 Testing. For more information click here

Update 11.01.2021

Latest guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19 – GOV.UK

For full details on the latest government shielding guidelines, click here.>>

Update 30.12.2020

Priority groups for coronavirus (COVID-19) vaccination: advice from the JCVI

You can download relevant documents here.>>

Update 21.12.2020

Government guidance has now been updated for people on the Clinically Extremely Vulnerable (CEV) list in Tier 4 areas. People on the CEV list in Tier 4 areas are now advised to follow shielding advice.

Today the Government is sending a letter to all people on the CEV list who reside in Tier 4 areas. This will also be widely communicated via the media. For patients on the CEV list where GPs have email addresses, the letters will be sent via email.

The shielding advice is the same that has been issued previously – full details can be found by clicking here>>

Update 17.12.2020

The published   Society-for-Endocrinology-covid-19-vaccine-statement.pdf

Update 16.12.2020

This site is recommended by chair of our MAB to help people get updates and information on the latest position with COVID:  Independentsage.org

Update 04.11.2020

Updated guidance for people who are clinically extremely vulnerable in line with new national restrictions

For the most recent UK Government updates regarding shielding and protecting those who are classed as extremely vulnerable, click here>>

Update 13.10.2020

Guidance on Shielding and Protecting People Who Are Clinically Extremely Vulnerable From COVID-19

For the most recent UK Government updates regarding shielding and protecting those who are classed as extremely vulnerable, click here>>

Update 17.08.2020

Guidance on Shielding and Protecting People Who Are Clinically Extremely Vulnerable From COVID-19

For the latest UK Government updates regarding shiedling and protecting those who are classed as extremely vulnerable, click here>>

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

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 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 https://www.gov.uk/coronavirus-extremely-vulnerable 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.

https://www.nhs.uk/conditions/coronavirus-covid-19/

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.