Here is an update from Chief Executive Joel Rose, on what Cardiomyopathy UK have been doing in response to the Coronavirus, in regards to our policies and services.
Since the start of the pandemic, The Cardiomyopathy UK team have worked hard to ensure that our information on the Coronavirus and how it affects people with cardiomyopathy and myocarditis is as up to date, accurate and relevant as possible. We have done this by working very closely with our network of clinical advisors across the UK and by liaising with other organisations such as British Society for Heart Failure, British Cardiovascular Society, European Society of Cardiology and others.
It has been very heartening to see how many experts have come forward to help us make sure we are giving the right information and support to our community especially in what is a fast moving and sometimes chaotic situation.
They have also played a pivotal part in informing our view that people with cardiomyopathy and myocarditis should follow government guidance for “vulnerable” people but that cardiomyopathy or myocarditis alone would not put you in the “shielded” category. We are aware that a few GPs have issued guidance to stay at home for 12 weeks to cardiomyopathy patients. If you are unsure as to what it means for you, please contact your GP to clarify whether this relates to general social isolation or being ‘shielded’ and whether you have additional risk factors to put you in the extreme risk group.
As well as making sure that we are able to give the right support and information we also have been able to adapt our usual services and create new ways of supporting people with cardiomyopathy and myocarditis during the pandemic; doing more online and growing our capacity to deal with a huge increase in calls to the helpline.
It is clear that some people have faced difficulties dealing with the practicalities of isolation especially when it comes to employment rights. We have produced a letter for employers that has already helped some people who were struggling to convince their employers that they are vulnerable and need to stay at home. If you need help with this please do speak to us on the helpline.
We are also starting to play a role in helping clinical researchers to investigate COVID-19 and the impact it has on people with cardiomyopathy and myocarditis and hope to be a part of a major European research project due to start in the next few weeks.
I am sure you will all be aware that the pandemic has had an impact on the NHS services you use with regular appointments being moved, cancelled or provided online. We are in contact with the major cardiomyopathy clinics and are working with the clinicians there to help them continue to provide the best support to you that they can.
I am sure that the pandemic will have a long lasting impact on these services. In some cases changes may become the “new normal” and a positive development, indeed some people have been in touch to tell us that they much prefer online appointments. Whatever the case, we will make sure that the charity plays a key role in helping to shape services once we have seen off this pandemic.
If there is anything else that you feel the charity can do in this unprecedented time or if you have any questions about what we are already doing, then do please get in touch.
Joel Rose, Chief Executive (joel.rose@cardiomyopaythy.org.uk / 01494 797199)