LHM Letter To Professor Paul Cosford

Professor Paul Cosford

Medical Director

Public Health England                        

5th May 2020

Dear Professor Cosford

Re: Coronavirus and complex non-correctable congenital heart disease 

Little Hearts Matter is a national organisation that supports, informs and advocates for thousands of children, teenagers, young adults, and their families, affected by complex congenital heart conditions that lead to having a single ventricle heart, half a working heart.

The last few months have seen a rapid health service and Government reaction to Covid-19 and the advice needed by people who are vulnerable and greatly at risk (shielded) if they catch the virus.

Early in the process, Little Hearts Matter was informed that patients with a single pump heart would be classed in the vulnerable group. This was further confirmed when the government classed people who were vulnerable as those who were offered the flu vaccination.

Children, teenagers and adults with single ventricle hearts, and their families, stepped into a period of isolation to protect themselves. As the country did the same the definitions of risk lost their focus.

As we gradually step away from lock-down the issue of vulnerable and shielding will become even more important. Most of the advice has been geared to the elderly and unwell but there are thousands of children, teenagers and young adults living with complex and life limiting conditions. Their needs must be accounted for as plans for further protection are considered.

Patients and their families want us to find the answers to the following questions. Some sit with clinicians and some will need to go to Public Health England and SAGE, representing the science to Government and the NHS.

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Ongoing question, as the advice is still different at every congenital cardiac centre and GP’s are now countermanding cardiology advice. LHM has taken this question to the profession via the BCCA.

Can we have a national response to vulnerable or shielding single ventricle patients?

  • Isolation

    1. Are people in the shielded or vulnerable group really likely to be asked to isolate until a vaccine is found, as has been said in the daily briefing?
    2. Should the whole family isolate to keep a child safe?
  • School

    1. How and when should children with a single ventricle condition be returned to school?
    2. If/when schools re-open, can siblings attend if they have a sibling in the shielded or vulnerable group? What would the risks be and how could precautions be taken?
  • Testing

    1. Will vulnerable people/children be a priority for an antibody test if/when one becomes available?
  • Exercise

    1. If the shielding period is extended, can a “safe” daily exercise slot be introduced to allow vulnerable people to be outside? We know that many cardiac teams have stopped their patients going out even for a remote walk!

  • Parental Employment

    1. Can guidance be given to employers to enable parents of highly vulnerable children to have permission to stay at home and look after them when they are isolated? Cardiologists in some hospitals are providing letters of support for parents that explain the vulnerability of the children but it is not standardly recognised that children will need a carer.

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  • Vaccination

    1. Can we ensure that children, teenagers and adults with complex disorders are apriority if/when a vaccine is available?
    2. Can we be reassured if/when the vaccine is available it is going to be safe for single ventricle patients along with the medications taken? It can probably be assumed that anyone classed as vulnerable and offered the Flu inoculation would be offered the Covid-19 inoculation.

  • Hospital care

    1. Most NHS services are postponing appointments, surgery and interventions, is this going to be the case for the long term for patients with single ventricle hearts?

Little Hearts Matter has approached the British Congenital Cardiac Association and the Congenital Cardiac Clinical Reference Group for clarity on these questions but it is apparent that they are looking to you for a safe response and clarity for their patients.

Please could I ask that children, teenagers and young adults are considered when you issue us with clear guidelines on ongoing risk and the proportionate response that our families should be taking?

We know we will head towards another peak in cases, probably during the Flu season. We need to make sure that this higher risk group remain as safe at the country can keep them with clear directives on risk and proportionate protection.

Thank you for your consideration of the needs of Little Hearts Matter members. I look forward to hearing your response.

Yours sincerely

Suzie Hutchinson RGN RSCN

Chief Executive and Service Lead

Little Hearts Matter

Supporting every step of the half a heart journey

75 Harborne Road, 4th Floor, Edgbaston, Birmingham, B15 3BU

T: 0121 455 8982    l    W: www.lhm.org.uk            

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