A statement on coronavirus, disabled people, people with long term conditions and carers.
With the situation related to COVID-19 changing from day to day, members of the ALLIANCE (including people living with long term conditions, disabled people and unpaid carers and organisations that work for and with them) are expressing understandable anxiety about the following issues:
- The direct impact of the virus on disabled people and people living with long term conditions, many of whom are at most risk from COVID-19, according to official advice.
- Care and support provision for disabled people and people living with long term conditions in the event of widespread infection.
- The long-term impact of COVID-19.
At the time of issuing this Statement, the ALLIANCE welcomes the advice produced on the impact of COVID-19 from the UK and Scottish Governments. We particularly welcome the commitment set out in the statement from the Scottish Government’s Cabinet Secretary for Health and Sport to the Scottish Parliament on 10 March 2020, that “those who are most at risk of contracting the virus and experiencing a serious illness are people in their 70s and 80s and individuals who have particular vulnerabilities in terms of their health… as we move into the delay phase, we will set out very clearly what those conditions are and what we are asking people to do.”
The ALLIANCE believes that people who are most at risk should be prioritised, and their rights and needs assessed, ensuring that contingency planning arrangements are made fairly, transparently, and publicly available in accessible formats. We are concerned with reports from other countries that people with long term conditions and older people are not being prioritised in response to widespread infection. The ALLIANCE calls on statutory bodies in Scotland to clarify their position on how a rights based, person centred approach will be facilitated in a health and social care system that may face unprecedented pressure in the event of widespread infection.
The nature of care and support provision for people living with long term conditions and disabled people means that this is a significant area of concern. According to NHS National Services Scotland’s recent advice, “transmission of COVID-19 is most likely to happen when there is close contact (within 2 metres or less) with an infected person.” Many paid carers will be moving between households, and the risk of transferring the virus is high. The ALLIANCE believes that clarity on contingency planning must be promptly published by the Scottish Government, Health Boards and Health and Social Care Partnerships.
Meanwhile, many unpaid carers are expressing anxiety that they do not have the resources or means necessary to put contingency planning arrangements in place for circumstances in which they are affected by the virus and unable to care. The ALLIANCE believes there is an urgent need for clear, accessible advice to be made publicly available on what to do in the event of a carer (paid or unpaid) being unable to provide care.
As Scottish Care has identified, the public narrative of “most people will be OK”, pushed by some media outlets and on social media, has highlighted discriminatory attitudes related to older people and people living with long term conditions. The general public should be aware, as Scotland’s National Clinical Director Jason Leitch said on BBC Scotland on 10 March 2020, that “no one is to blame if you get sick.” Everyone, including health and care professionals, should be alert to the need to take simple steps to ensure disabled people and people with long term conditions are not excluded from everyday life, for example writing things when using a face mask for the benefit of people who lipread.
In the longer term, we are concerned that the rise in people experiencing respiratory conditions could present a serious challenge to health and social care services in the coming years. The ALLIANCE recommends that the forthcoming Respiratory Care Action Plan for Scotland is amended to account for a potential rise in demand for community-based support as a result of such an increase, and advice on how statutory services should respond.
The ever changing environment in relation to COVID-19 creates many challenges for Scotland’s public services, including NHS Scotland, Health Boards and Health and Social Care Partnerships. The ALLIANCE strongly encourages national and local services and support providers to consider and engage with people with long term conditions, disabled people and unpaid carers in their future plans.