The last few weeks seem like a lifetime. Through all of the shock and uncertainty, I am so proud of the charity as we rushed to provide support to our families and found new ways to work. Like many other charity Chief Executives the realisation of the financial impact became apparent very quickly. I waited for the government announcement about how the charity sector would receive the support it so desperately needed. Every day I tuned into the briefings with bated breath and each day tried to remain hopeful that the positive news would come.
Finally, on 8th April, facing the realisation that we would lose £100,000 of income over the first 3 months of the crisis, the announcement came. As the Chancellor started to outline the £750 million packages of support that would be made available my heart began to sink. None of the programmes available are open to CLDF. We waited to look more closely at the fine print only to discover that as it stands, we won’t even be eligible for any of the monies raised by the Children in Need/Comic Relief Big Night In which takes place next week.
At a time when we are needed more than ever to support, inform and guide our highly vulnerable families and young people through the practical and health implications of the crisis, we find our very existence is threatened. Not only that, each new day children and babies are still being newly diagnosed with liver disease.
Many charities like ours will not be able to survive this crisis without some access to support. When this is all over, the charity sector support system (which has worked as a silent partner with the NHS to support patients across most disciplines) could be completely decimated and this will have huge unforeseen consequences to the health of the nation.
Earlier this week, I joined together with Chief Executives of other national health-related charities to try and shine a light on our concerns, so that more people are aware of the discrepancy in opportunity for our charities. With the support of the Specialist Health Care Alliance we want to ensure that we are heard. We believe that CLDF and charities like ours are key partners in getting through this crisis. You can view the link to quotes from a whole host of other charities that are similarly affected here.
Despite everything that is going on, we are ensuring we work tirelessly to help our beneficiaries through this crisis. On the phone, via email, Facebook, Zoom support sessions, writing blogs and working with NHS partners on messaging and advice etc. As you know, many of the families we support are shielding and we are supporting our NHS colleagues by providing the practical advice, support and guidance they need, alleviating some of the pressure on NHS units with calls for help and support. We will also be here keeping our eye on any unintended consequences of restrictions.
We will fight for our families though and we will work with other charities to try and make our case for support. In the coming week I will be looking at ways that our supporters might be able to help in this campaign, by bringing our plight to the attention of local MPs and decision makers. Watch this space and know we are with you every step of the way.
Keep well, Keep safe
Alison
Chief Executive
