| HELPING BEREAVED FAMILIES AND THOSE WHO CARE FOR CHILDREN WITH LIFE LIMITING CONDITIONS AND TERMINAL ILLNESSES |
update
Layla's Hospital Room was our most extensive project since the charity started in 2012. We where working closely with the Island's hospital to renovate and extend the existing parents room.
We had identified that there was no dedicated overnight facilities for parents or guardians to stay on site for any length of time, specifically for children's ward. During our stay at St Mary's with Layla, we slept on pull-out beds in the HDU room which was not ideal for us or the medical staff as we were conscious of being in the way. At the time we did not think too much about it, but retrospectively we felt that dedicated sleeping facilities would be very beneficial for families who want or need to stay with their child overnight. In addition, shower / washing facilities and a kitchenette should be provided for parents to share when the room is unoccupied during the day, as we had to use the showers within the ward. We wanted to design a room that was a flexible space used for private counselling, informal consultations and other support meetings. Under the right circumstances, we hoped to also make this room a private setting for end of life care, where families could be with their child at the end.
Proposed works included the rebuild and possible extension of an external wall (which was not fit for purpose,) a new roof, internal renovation, kitchen, shower room, washing facilities and new medical services, intercom to children's ward and NICU, seating, meeting table and much more which would have been reconfigurable in order to fit many needs.
As we are both trained in the field of architecture, and with the principal 'green light' from the hospital to move things forward, we came up with a design for the agreed space. It was tabled and supported by the staff and we, along with key members of staff, lobbied for it to be pushed up the hospital hierarchy to make it a reality.
Unfortunately, after 3 long years of battling the establishment to get this moving, and a ring-fenced budget of our supporters hard raised funds to move this forward, we have reluctantly come to the decision that whilst the ASR (Acute Service Redesign) is going on, that we cannot move the project forward effectively with the current proposals. We have accessed that the risk to our investment of funds would be misplaced if for example the ASR saw the relocation of children's care, or the removal from the site altogether. They are unable to give us the assurances we needed to move it forward and therefore, we have no choice but to go back to the drawing board.
Needless to say, we are disappointed and saddened that we have reached this point, especially as we have been fighting this for such a long time, but we aren't giving up. We think that a round two is on the cards. A revised scheme that is about a temporary solution, at a lower cost, whilst we work with the hospital to try and get a seat around the table for the ASR process, working to help improve on any changes that maybe taking place in the future.