starFighting Back

It took us 18months to finally get the care that our son needed. Having spent 8 months in a Rehabilitation unit we came to learn that our son would need 24/7 care – something we couldn’t possibly provide and still function as a normal family. With 2 other children and jobs to attend it was crucial that Jago received this care to allow our family to sustain a secure and positive environment.

Applying for Funding is a very confusing and exhausting exercise.  We soon learned that it would not be a quick process and that we would have to fight tooth and nail to get the care that our son needed. The first step was to apply to the CCG where they assessed our son’s needs. They eventually came to the conclusion that he did have a “primary health need” and a complex medical condition with substantial and ongoing care needs. They however did not want to provide the level of care that we felt he needed and so the ‘fight’ began.

I can honestly say that it was the most stressful time of my life, a time when I was already vulnerable having still not come to terms with the ‘accident’ itself and the loss of the son I knew before. However after contacting a solicitor and finding out that we did have a case we appealed twice and eventually achieved the care Jago needed. The key is not to give up, appeal as many times as it takes because if you have a sound case it is their ‘duty’ to provide this care. In this system, ‘He who shouts the loudest gets heard’ really is true!

Here are some simple steps to get you started:

  1. Visit NHS Continuing Care to see if your child is entitled to Continuing Care
  2. Be prepared. Write a list of all the things that you need help with, taking into consideration your other children, their commitments and of course your other commitments in terms of work and general housekeeping. Ask yourself how does your disabled child impact on this in terms of time and organisation. Literally list the extra time in hours that is needed to provide your child with the care they need. This extra time that impacts your day should be taken into consideration when deciding on your care package.
  3. It is also important to take into consideration the unpredictability of your child’s condition and to look at worse case scenarios when deciding how much help you need.
  4. As a family it will be important that you have some form of Respite this should also be considered.
  5. Contact your local CCG and ask to have a meeting with them to discuss a Support Package.
  6. REMEMBER, allowing someone else to care for your child is ok, you need this time away to recharge and come back to them revitalised. It is vital for you and your family.

Useful information & websites

National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care

Legal advice from Pannone and Child Brain Injury Trust