To the BCCA and the CHD Clinical Reference Group

Re: Single functioning ventricle heart disease and Covid-19

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 if they catch the virus.

Early in the process, Little Hearts Matter was informed that patients with a single pump hearts 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.

However confusion ensued following the new directive that some people needed to be in a higher shielding group. The SVHD patient community immediately assumed that they should be included in this group, even though the restrictions often left them isolated within their own homes.

We understand that the BCCA membership of consultant cardiologists, from around the country, discussed the risks to their patients using the data that is currently available. They agreed that all Fontan patients would be classed as vulnerable but some individual patients would be given the Shielding status, if it was agreed that they had a higher risk. We understand that the profession would have liked a level between vulnerable and shielding as the draconian rules set for shielding patients was to strict but that the NHS wanted to stick to clear messaging so shielding had to be used as the level for more vulnerable patients. There has been added confusion about this advice as some health authorities and trusts have given blanket shielding advice rather than individual patient focussed information.

As we gradually step away from lock-down the issue of vulnerable and shielding will become even more important.

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 Government and the NHS. I would be grateful for the professions thoughts moving forward.

Ongoing question, as the advice is still different at every centre and GP’s are now countermanding cardiology advice.

1. 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?

What will the BCCA and the CHD CRG advice the NHS be?

School

3. How and when should children with a single ventricle condition be returned to school?
4. 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 our families 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.

Vaccination.

1. Can we ensure that our children are priority 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?

Answer – 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 is this going to be the case with our children
2. All health services have been put to a stop or are conducted remotely as no one is allowed in your home or close contact for appointments when will it be ok ?

I realise that as a profession consultant CHD specialist all have a different view on the risks for their patients. Of course, we understand that some patients have a higher risk than others. Our over whelming concern is that there will be a lack of clarity moving forward. Messages need to be clear and risks need to be properly explained. You are probably aware that leading CHD specialist in Spain have been staging online Question and Answer sessions for their patients.

Little Hearts Matter is happy, as always, to support the actions deemed to be safe for our members but at the moment the messages are very mixed and our members remain confused and very worried for their children or for themselves as adults.

Please could I ask that as a profession you could issue us with clear guidelines on ongoing risk and the proportionate response that our families should be taking.

We know we may head towards another peak in cases, probably during the Flu season. We need to make sure that this higher risk group remain as safe as the country can keep them.

I look forward to hearing from you.

With best wishes from

Suzie

Suzie Hutchinson RGN RSCN

Chief Executive and Service Lead

Little Hearts Matter

Supporting every step of the half a heart journey

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

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