Hydro-families meet up
The Pitch
Problem statement
To connect families in Bournemouth and the surrounding area whose children suffer from paediatric hydrocephalus.. In the last two months we have had 20 families referred into our charity from Bournemouth and the surrounding area whose children have hydrocephalus. Every year in the UK around 1 in 770 babies will develop hydrocephalus, it is life-threatening and the number one reason for brain surgery in children. Managing the condition is very hard as a child can become critically unwell within a matter of hours and it is not uncommon to hear of a ten year old child with hydrocephalus having endured 40 brain surgeries. For families managing this isolation and anxiety is commonplace.
Solution
We want of offer regular meet-ups for families who children have the condition where the children and their families, including Grandparents can share expreince and build networks. We held a very successful meet up at the Pavilion arms in Dorset. The venue's management have direct expreince of the condition and so can offer private space where families can meet. We want to build on the connections made at the event and encourage new families to join so that families can share expreince, can feel a sense of reduced isolation and can learn from each other. We want a member of the Harry's HAT team to attend each event to provide support and resources to help the families on the journey.
Why are we best placed to deliver?
We are a user-led charity developed by families affected by hydrocephalus for families in the same situation. We are therefore best placed to understand the unique challenges faced by families facing the diagnosis and to understand the impact on the whole family. Further we have built excellent links with Southampton Children's Hospital and Bristol Children's Hospital. These are the two specalist hosptial that any child in Bournemouth and the surrounding area who has hydrocephalus would be treated under. Therefore the specalist nurses at these two hospitals can refer families to the project and can make families aware that there is support locally.
Focus Areas
Delivery plan
Budget breakdown
| 4 events per year £350 per event which includes food (venue space is donated) | £1,400 |
| Staff time at 120 per day x 4 | £480 |
| Marketing for flyers and website updated | £120 |
Beneficiaries
65 people
Who will benefit
Expected impact
The families who attend the events will feel more connected, more empowered and less alone as a result. The friendships and support that they gain as a result will form a crucial part of their support network as they journey through their child's condition. We recognise that Grandparents and siblings can often feel overlooked so these meet-ups offer a chance for siblings to connect as well as Grandparents and for targetted spin-off work to ensue as result of the initial meetings and shared connections. Families will also become better informed about the condition which can be very complex as we will ensure all the resources are there and available for families to take and there will be chance for families to ask specific questions pertaining to hydrocephalus journey which can help them feel better able to manage as a result. However one of the main outcomes will be fun! We know that children and their families often miss out on fun so this is chance to relax and just enjoy.
Track record
This project idea is based on our a previous very successful event which was held in the locality and the need for this to develop. We have expreince as a charity of hosting a number of family events and the feedback is always exceptional. At our last event in Bournemouth one parent said "finally I have found people who just get it and who get him. I am actually crying now because I didn't realise there we other families like us living so close" Another comment from a Grandparent who came " I do a lot of the support but there is nothing out therefore for me. This is first time that I feel my role in caring for L has been acknowledged and it is so nice to meet another Granny who understands". We have managed several high profile grants, including Globals Make Some Noise and BBC Children in Need and the National Lottery Community Fund. All have been impressed by the outcomes and impact of the work they are funding.