A message from our Chair to the PWS community

We are in the midst of a national crisis the likes of which none of us have ever experienced. The predicament some people, families, friends and loved ones find themselves in is frightening; for many life will never be the same again and for some it will be much worse. Words I never dreamt possible just a month ago are now very true: there is a remote but nonetheless real possibility that PWSA UK will not survive this crisis.   

Over the past two weeks we have been modelling our position and where we might be over the course of the coming year against a worst case planning scenario. I want to be honest with you, the figures are not encouraging but this will be the same for households, families, charities and more all across the world. Our modelling has shown that against a worst case scenario if we were to do nothing, that is carry on as we are now, by December we would be below the three months of reserves where the Charity Commission would expect us to use all remaining funds to wind up the charity. Clearly, reality will bring huge variations in our analysis and our model is designed so that it will adapt to the variations. The analysis is also based on an absolute worst case scenario and the reality will be different. For example if we are able to resume even three quarters of normal business by end of June we will be fine but right now we have nothing other than worst case to plan against.  

My reason for writing to you with this news is twofold. Firstly, I said in my last letter that whatever we release as a charity would be the absolute verified truth, some of you may have been worrying about the charity’s prospects in the current situation and I want you to have the truth. Secondly, I want you to know that I, the Trustees, the staff and the volunteers will do whatever is necessary to ensure this fabulous charity is here for you whenever you require it.

We have already taken steps to make savings in order to secure the charity’s future. Fortunately, the Government has introduced an extremely useful measure in the ‘furlough’ scheme where members of staff are temporarily laid off and the Government pays 80% of their wage. Three members of the PWSA team have agreed to be placed onto furlough. This was an exceptionally tough decision but necessary. The remaining members of staff have all agreed to a reduction in their hours in line with the new working environment as a further savings measure. This reduction in hours does not affect our ability to serve the community. Alongside the sacrifice the team is making other measures are being introduced or explored.

Another impact of the current situation is that all fundraising, family, clinic attendance, training and conference events in April and May have been cancelled, mostly in line with social distancing, which will bring some savings but also impacts income. Future event cancellations will be decided on a two-month rolling basis and you will all be kept fully informed.

Amongst all of this however, we are determined to deliver to you the very best support we can. Our normal service delivery to the community will continue but in line with social distancing measures. The staff will continue to take your calls and deliver the information, help and assistance you seek and I, the CEO and Trustees will continue to work tirelessly to ensure we are always there for you.

Finally, my ask of all of you. I do not write to you now to beg for extra financial support but what I am requesting is that your support does not change hugely from where it is now. Each of our situations are different; some of us will need to find the savings I discuss above in our own homes and lives to look after our loved ones. In such circumstances it is only right that you consider where your money goes. But if I could ask you all to consider that alongside the sacrifices the team have made and the further savings measures we have introduced, if some of the income streams remain above our worst case planning then we will survive this crisis and continue to be there for all of you in the future. For example, if you continue with the standing order you may have set up with us, continue to pay the membership you planned to before COVID-19 or continue with the individual acts of kindness in raising funds for our charity then our income will not drop to the level feared and we will have more than a good chance of getting through this and continuing to deliver benefit to the whole PWS community. Information on membership will be released shortly. In short, I am asking you to not change your support to us.

I will finish as I did last time by wishing each of you and your families the very best wherever you and they may be, and by reiterating my promise that we will do whatever it takes to ensure the charity continues for all of you.

Kind regards