Jackie Baillie MSP and Joan Mcalpine MSP the Scottish Parliament Edinburgh EH99 1SP Jeane Freeman Cabinet Secretary for Health A
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Jackie Baillie MSP and Joan McAlpine MSP The Scottish Parliament Edinburgh EH99 1SP Jeane Freeman Cabinet Secretary for Health and Sport The Scottish Government St. Andrew's House Regent Road Edinburgh EH1 3DG Dear Cabinet Secretary Impact of Covid-19 on people who have a learning disability We write to you as Convenor and Vice Convenor of the Scottish Parliament’s Cross Party Group on Learning Disability to raise our collective and significant concern about the disproportionate impact of Covid-19 on the population of people in Scotland who have a learning disability, and seek your leadership in ensuring that the human rights of this group are firmly upheld as we continue to move through the pandemic. In summary, on behalf the CPG Learning Disability, we call on you to: • Urgently clarify the number of DNACPR orders issued in Scotland for people who have a learning disability during the pandemic • Confirm the status of guidance issued to health and social care staff since the first wave of the pandemic that having a learning disability is not sufficient rationale for applying a DNACPR order, and will not be tolerated • Urgently issue guidance to primary care staff to encourage all people who have a learning disability to come forward as Priority Group 6 for the vaccination, in line with the approach taken by NHS England this week • Urgently issue guidance to ensure that all people who have a learning disability who live in a care home setting have been offered the vaccine, regardless of age • Take steps to ensure that the visibility of people who have a learning disability in public health data is improved • Reassure people who have a learning disability in Scotland that their social care support will be restored to pre-pandemic levels as soon as it is safe to do so • Confirm progress for the cohort of people identified in the 2018 Coming Home report in leaving long stay institutional settings Do Not Resuscitate Orders In April 2020 during the first wave of the Covid-19 pandemic, members of the CPG approached the Scottish Government with concerns about the use of DNACPR forms. We were assured at that time that disability, including a learning disability, alone is not ever a reason for completion of a DNACPR form. The Chief Medical Officer advised at that time that the Scottish Government was “currently updating our clinical guidance to ensure that there is clarity in relation to the use of the Clinical Frailty Scale (CFS) which will make it as clear as possible that this should not be used in younger people, people with stable long-term disabilities (for example, cerebral palsy), learning disability or autism. An individualised person centred assessment is recommended in all cases where the CFS is not appropriate.1” 1 https://www.epilepsyscotland.org.uk/do-not-attempt-cardiopulmonary-resuscitation-dnacpr-order-chief-medical-officer-response/ However, since that time, CPG members have reported anecdotal experiences of DNACPR conversations and forms being taken forward for individuals who have a learning disability. Can you please confirm the status of the guidance that has been issued, and of subsequent reporting and monitoring of DNACPR orders for people who have a learning disability in Scotland during Covid-19. Mortality Rate Data CPG members have noted with considerable concern the distressing data published on 4th February 2021, the Scottish Learning Disability Observatory (SLDO) has published data on the impact of Covid-19 on people who have a learning disability in Scotland, and are grateful for your letter highlighting this to us. We note that we now have clear evidence that: • People who have a learning disability in Scotland are at greater risk of death - three times more likely to die than the general population from Covid-19 • People who have a learning disability in Scotland are at greater risk of infection – twice as likely as the general population to test positive for Covid-19 • People who have a learning disability in Scotland are at greater risk of becoming seriously ill as a result of Covid-19 – twice as likely to be hospitalised As you are aware, these findings are presented on top of existing health inequalities which result in higher mortality rates for the LD population generally - SLDO data confirms that people who have a learning disability in Scotland die twenty years earlier than the general population[2] The CPG has been calling for this data to be published since the summer of 2020, when the data from Public Health England emerged which confirmed that people who have a learning disability in England are up to 6 times more likely to die than the general population as a result of Covid-192. Whilst we are glad that this information is now published, members are frustrated at the length of time it took to produce a high-level summary of the impact of Covid-19 on people who have a learning disability in Scotland. CPG members remain concerned about the apparent invisibility of people who have a learning disability in public health data, and we are calling on the Scottish Government to address this as an urgent priority in its new learning disability strategy for Scotland. We note that this had been a stated objective of the Keys to Life strategy, published in 2013. In the current context however, this delay has meant that the pandemic has continued into this winter without the opportunity to apply learning to the vaccination programme and public health advice for this population. Access to Vaccinations Following the publication of mortality data for people who have a learning disability in Scotland as a result of Covid-19, members of the Cross Party Group are urgently calling for greater support for this population to access the vaccination in Priority Group 6 in line with current JCVI guidelines. We are pleased that the COVID-19 vaccination programme is well underway in Scotland, based upon recommendations from the JCVI (Joint Committee on Vaccines and Immunisation) which places people who have Downs Syndrome in Priority Group 4, and people who have complex and severe learning disabilities in Priority Group 6, along with family carers. However, Priority Group 6 also includes all individuals aged 16 years to 64 years with underlying health conditions which put them at higher risk of serious disease and mortality. Whilst a learning disability in itself if not an underlying health condition, given the evidence of higher risk of serious disease and mortality across all age ranges for this population, CPG members are calling for better support for people to access the vaccination , and believes that every person with a learning disability in Scotland should now be supported to come forward in included in the JCVI Priority Group 6 for vaccination from COVID-19. We note that the UK Government has this week published an updated Covid-19 Vaccination Uptake plan which highlights strategies to help overcome the particular challenges that people who have a learning disability face in accessing the vaccination programme generally UK COVID-19 vaccine uptake plan - GOV.UK (www.gov.uk) We also note that NHS England has issued guidance to GPs and primary care [2] [2] Life expectancy of people with learning disabilities | Research projects | Scottish Learning Disabilities Observatory (sldo.ac.uk) 2 ] Source – Public Health England COVID-19: deaths of people with learning disabilities - GOV.UK (www.gov.uk) settings recommending that they invite all people who have a learning disability to come forward. The guidance note encourages the voluntary sector to assist in identifying people who should be considered. The CPG welcomes this approach, and calls on the Scottish Government and NHS Scotland to issue similar guidance as a matter of urgency; CPG members stand ready to support any efforts to maximise availability of the Covid-19 vaccine in communities across Scotland. In addition, we urgently ask you to issue guidance around the vaccination programme for adults and young people who have a learning disability who live in a residential care home setting. CPG members are aware of numerous examples of people who have a learning disability under the age of 65 (but vulnerable to experiencing the impact of the health inequalities already discussed) who live in care home settings, but have not yet been vaccinated in priority group 1 because of their age. Data from ONS this week highlighted that one of the biggest risk factors for disabled people dying of Covid-19 was where they live, with residential care home settings considered as the highest risk. As a matter of urgency, please ensure that guidance is issued to local vaccination teams to offer the vaccination to all people who have a learning disability in a residential setting, regardless of age. Hours of Social Care Support post Covid-19 As you will be aware, there are 23,500 people who have a learning disability who are known to local authority social work teams in Scotland, and around 4,000 people currently meet the eligibility criteria to receive formal social care support, either through residential care home placements, care at home support, and or day service provision. During the pandemic, for many people, hours of support have been cut, and many day services in particular have ceased to operate. This has had the impact of leaving many vulnerable people isolated and alone, and very worried about what will happen next. Members of the CPG report feeling frightened that social work will assume that they have managed fine without their support for so long that they can reduce their support hours permanently; when the reality is that people are not living well, and are experiencing harm as a result of this reduction in support.