Ending of the Highest Risk List

PAMIS are sharing with you information we have received about the ending of the Highest Risk List (HRL). This will happen at the end of May and is based on Scottish Government and medical experts examining the results of the vaccination programme, new treatments and ongoing precautionary measures. There is further information on the decision here – https://www.gov.scot/news/end-of-the-highest-risk-list/  A summary of the information we received is below.

PAMIS have responded to a discussion with a representative from the Scottish Government team and highlighted some areas for consideration. We remain concerned that not all people within our community are visible in the system that they describe will identify those who continue to have a higher risk from COVID-19 post vaccination, primarily people whose immune systems are suppressed or compromised due to a health condition or treatment. We also want to know what consideration is to be given to ways of identification and support in the future for people who may continue to be at highest risk, taking into account potential new variants and emerging evidence, especially as past experience tells us that our community remains in many instances invisible. A reliance on clinicians and GPs to identify those who may require additional consideration was not wholly successful in the past.

We have also raised concerns about the message that this current guidance gives about infection control measures that many families continue to implement personally but now risk others lifting measures that have provided protection. Resuming activities within communities is of course where we all want to be but only if the communities are mindful of the impact infection can have on many of the people PAMIS supports, including relatives who also have ongoing healthcare issues.

PAMIS does recognise that for some families this is a welcome move and we also highlighted that if this is the case there should be no reason for restricting the day services which we continue to raise with Scottish Government as an ongoing issue.

We have asked about the ability to be able to continue to source lateral flow tests as we as an organisation will continue to insist staff do this before any visits and activities. We were assured that these will remain available and free of charge. Again, please do let us know if you are having any issues in obtaining these.

We have also offered to arrange meetings for you as families to engage with the Scottish Government team. We have suggested that this is a conversation where your voice, concerns and suggestions should be listened to as experts in your own right on infection control and the wellbeing of your relative. As part of a learning disability portfolio several other organisations raised similar concerns about today’s announcement, and we could join with them and other affected groups to meet with the medical and Scottish government team. Please let us know if you feel this would be useful.

We are interested in your views and any concerns that you may have. It would also be useful to know if anyone doesn’t receive a letter from the CMO when they feel they should have.

We are considering this being a topic of discussion at the PAMIS carers chat next week, as a means of support but also collecting any information that you want us to send back to the government collectively.

There is quite a bit of information below, but we considered it important to ensure you have access to everything that we have. We will be asking for more information about resources to support your and your relative’s wellbeing. Please get in touch if you have any comments or concerns or join the carers chat next Tuesday at 9pm. Contact your family support director or email [email protected] with your comments.

 

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Synopsis of email from Disability Equality & BSL Policy, Age Equality and Older People Policy, Equality and Human Rights.

“The Highest Risk List (HRL) will end on 31 May.  Seen as a positive step as there is no longer a need for the vast majority of people who been on our Highest Risk List to consider themselves at any significantly higher risk.  The hope is enablement to adapt to living with COVID and enjoy a better quality of life.

The Strategic Framework update in February 2022 indicated that there was consideration of continued need for a Highest Risk List given the strong evidence that people’s risk from COVID-19 has changed as result of the vaccination programme, new treatments and ongoing guidance on precautionary measures. This message was repeated in the HRL in the Chief Medical Officer’s (CMO) most recent letter in March 2022.  This letter also assured everyone that Scottish gov would let them know about any changes, and share the evidence used to make those decisions.

With more people initially considered at highest risk getting significant protection from Covid-19 through vaccination, combined with the ongoing negative impacts for those on the HRL in terms of physical and mental health and quality of life, they do not expect nor want a widespread return to shielding in the future. This has been true even with the emergence of the Omicron variant and high case numbers.

Vaccine uptake has been strongly encouraged and as of 20 April 2022, almost 97% of those eligible on the Highest Risk List have received one dose of the vaccine, almost 96% have received two doses, and almost 91% have received a third dose and/or booster dose. 90% of those identified as severely immunosuppressed have received their third dose, and 36% have already received the spring booster.

Since summer 2021, the CMO has advised everyone on the Highest Risk List to follow the same advice as the rest of the population in Scotland, unless advised otherwise by their GP or clinician.  They are no longer using the Highest Risk List to prioritise people for vaccination and instead are using a number of different data sources to identify people according to JCVI criteria. Likewise, they have not used the Highest Risk List to identify people who meet the criteria for new treatments such as antivirals and monoclonal antibodies.

The situation has changed significantly since they created the Shielding List in March 2020, not least in terms of the more extensive and more accurate data Public Health Scotland can now access to identify people according to specific criteria, which was not available to in March 2020. At that time, they used what little was known about the virus to identify groups of people reasonably believed to be at highest risk of poor outcomes if they caught the virus. The evidence now is that many of the groups and individuals originally considered to be at higher risk do not need to be considered as such any longer. Even those with a weakened immune system are responding to the vaccine with the recommended additional doses, but it is recognised that some immunosuppressed or immunocompromised people do still have a higher risk than the rest of the population.

In place of the list, they have worked with Public Health Scotland to stand up a process to identify people for vaccination priority, new treatments, or additional advice, as and when needed, based on current and up-to-date data. This is likely to focus more on people who are immunosuppressed or immunocompromised. For the reasons outlined, the time is now right to end the Highest Risk List. It’s important to be clear that this decision does not mean the people who remain at highest risk will not be prioritised for vaccination, or that they will not be able to access treatments if they do catch the virus.

Communications and Evidence

CMO will write to everyone on the list to:

• tell them we the list is ending;
• outline the evidence the decision is based on;
• reassure them they will still get vaccinations and treatment they are entitled to in future;
• signpost where people can get further support including for mental health and wellbeing.

Additional communications will issue via the SMS service and be available online.

CMO has written directly to everyone on the Highest Risk List throughout the pandemic, and the recent PHS survey published on 30 March evaluating the Shielding Programme has shown that those letters have made a difference and people have felt supported.

A paper has been published today which gathers and explains the clinical evidence relating to people on the Highest Risk List and their current risk following vaccination. This document will be available to help those who are on the Highest Risk List to understand their risk and the decision to end the List, and also to help discussions with their clinicians and GPs. The main points in this paper are that:

• the vaccination programme has been effective in providing protection even to those with a suppressed or weakened immune system;
• many people on the List are now at no higher risk now from Covid-19 than they would be from other infections and illnesses before the pandemic;
• the number of Covid-related deaths has dropped from a high of 19% in January 2021 to 2% in December 2021 and January 2022;
• it is highly unlikely we will return to a position where we would ask anyone to shield in future.

The full paper will be available online at www.gov.scot/publications/covid-highest-risk/pages/research-about-shielding/

Support for mental health and wellbeing

Evidence from the PHS surveys and user research shows that many people on the Highest Risk List have been negatively impacted in terms of their mental and physical health and wellbeing and quality of life.  The latest PHS survey published on 30 March 2022 found that 81% of people said they were still making decisions which were influenced by fear of Covid-19 and 36% reported they were still trying to minimise all physical contact with others.  90% said they would remain worried about being at highest risk for some time.  Some people on the Highest Risk List will therefore need time and in some cases support to resume day to day interactions and activities as they adapt to a more normal way of life.

The full findings of the survey are available at COVID-19 shielding programme (Scotland) impact and experience survey – part two (publichealthscotland.scot)

The report includes recommendations about supporting the ongoing needs of people who have been on the Highest Risk List which will require a range of support.  This could be provided through the NHS, Health and Social Care Partnerships, Local Authorities and the Third Sector in order to support people to recover, rehabilitate and reconnect; and ensure prevention of any further exacerbation of physical and mental health impacts.

There will be engagement with a wide range of stakeholders and delivery partners across all sectors to raise awareness of concerns for some people who have been on the Highest Risk List and to consider longer term support that may be needed by some people who remain more worried or cautious.  Their aim is to work together to help people who have been on the Highest Risk List to recover, reconnect, and benefit from the lifting of restrictions along with everyone else.”