It can be incredibly daunting to receive a diagnosis of Cerebral Palsy at any age. For a parent whose young child has just been diagnosed this can be very difficult to process. For an older person a diagnosis can be a huge relief, the resolution to a long struggle to understand the physical challenges they have faced.
For those with young children it’s important to take a little time to process this news as a family, and then you can start working together to manage the condition positively.
The earlier a diagnosis is secured the easier this can be, you will be able to start working on various therapies and meeting with specialists for regular support. It is crucial that you put together an action plan to manage this as soon as possible, we have put together a framework to help:
Cerebral Palsy Management Action Plan
Step 1: Communicate with friends and family
You are going to need extra support in the years to come, it is important to make sure that everyone involved properly understands the condition. It can be difficult to explain this to young siblings, but being open about it and ensuring they know they can ask questions will help.
Step 2: Follow the doctor’s orders
You will be referred by your GP to specialists; it’s important to set up meetings as soon as possible to help with condition management. From there you will be pointed towards physiotherapists and any appropriate medicines will be trailed.
Step 3: Asses your situation
What are you going to need in the coming years to accommodate for this? If you are living in a two story house then do you need to move to a bungalow, or consider remodelling to provide a ground floor bedroom? Will you need powered mobility chair, or lycra suits? Is there a surgery that might afford better quality of life that isn’t currently NHS funded?
Step 4: Get your finances in order
Being disabled is expensive. There are various charities and organisations that can help with funding for specific equipment, but you will need to be organised if you want to get these funding applications in on time. The sooner you start planning the better. In cases where you suspect Cerebral Palsy has been caused by a birth injury or mismanaged pregnancy then you may be able to claim compensation to support your child in the years to come, it is definitely worth speaking with a professional about this as it may mean you can afford to fund surgeries that aren’t covered by the NHS.
Step 5: Peer to peer support
For under 25’s then we would recommend you get in touch with the charity KIDS who will assign a key worker to support emotional and physical development. If you are lucky enough to live in an area that has an active Cerebral Palsy Society then this network is also well worth connecting with. Or if you would like to speak to other people in a similar situation to you from the comfort of your own home then you can try our free online forum.