Breathing Spaces – the True Colours Fund for Parent/Carer Rooms in Hospitals
Lisa and Mike’s Story
Our son Rory was diagnosed with athymic complete DiGeorge syndrome in October 2013, which essentially means that he was born without a functioning immune system. As a result, we spent the best part of 3 years in and out of hospital, which included many long and difficult stays. Having a seriously ill child in hospital is one of the most stressful experiences a parent can go through and all of us respond in different ways to the pressures of hospital life but most of us, at some point feel lonely, frightened and far away from home and the support of our friends and family.
We spent the majority of our time with Rory in his room day and night, which involved complicated rotas to ensure he was never left, that we both saw our other son and that Mike could continue to work full time. Sometimes, we just needed a break: when Rory went to the operating theatre, we didn’t want to wait by an empty bed but we were too nervous to leave the hospital; we had to have many difficult conversations with the medical staff and afterwards we needed to talk (or cry) and not in front of Rory; Rory was on TPN for the majority of his life which meant he was fed intravenously and as a result we never felt that comfortable eating in front of him; or sometimes we just wanted to connect with someone else who knew what we were going through – other parents.
Unfortunately, sitting rooms/kitchens for parents or carers in hospitals are often given very little thought – it is the child who is sick after all. This is true of course, but we as parents play a vital role in our child’s care team so this needs to be seriously re-evaluated. If we look after the parents, then they are better fuelled physically and emotionally to look after their child so everyone benefits.
Mike and I are determined to do what we can to make families’ experiences in hospital more bearable, to help parents develop friendships, share their experiences and give them the space they deserve.
Lisa and Mike
Breathing Spaces – Summary
The True Colours Trust has established the Breathing Spaces Fund to improve parent/carer rooms in hospitals. Eligible hospital charities can apply for grants of up to £20,000 to renovate or create parent/carer rooms on any in-patient paediatric ward. For the purpose of this programme a parent/carer room is defined as ‘a non-clinical space within a hospital set aside for the exclusive use of the parents and carers of a paediatric patient. It should create a ‘home from home’ environment but is not overnight accommodation’.
Families of children with complex health needs can spend weeks in hospitals. The provision of parent/carer rooms in hospitals across the UK is mixed: there are some excellent examples but there are also some hospitals with no parent/carer rooms, as well rooms in need of modernisation. From our discussions with parents we know that well-designed and well-equipped parent/carer rooms can significantly improve long stays in hospital, facilitate peer support, and also provide space for quiet reflection and respite.
To ensure that Breathing Spaces benefits the families of children with the most complex needs, and as funds are finite, the decision has been taken to restrict the Fund to improvements in UK hospitals with a PICU, eligible hospitals are listed here, all of whom will be invited to apply via their hospital charity. If your hospital or hospital charity does not receive an invitation to apply, unfortunately this means you are not eligible for funding through this programme, at this stage.
Applicants may request up to £1,500 in advance towards the costs of designing a parent/carer room in line with the Breathing Spaces guidelines, this sum will be deducted from the total £20,000 grant available. Any changes to parent/carer rooms funded by Breathing Spaces must be sustained and maintained for a minimum of five years and 10% of each grant should be ring-fenced for annual maintenance costs.
Successful applicants with well-maintained rooms will be eligible to apply for a further one-off grant of £2,500 to update the room at the end of the five-year period.
The programme will run from March 2018 to March 2020.