Cerebral palsy diagnosis – what questions should I ask?

If there are problems during your child’s birth, one of the most serious consequences is a brain injury. As your child develops, you and health visitors may start to notice that your child is missing development milestones; not sitting up, walking late, not talking when you would expect them to.  These can be signs that your child has cerebral palsy as a result of their brain injury.

If you’ve just received a diagnosis of cerebral palsy (CP) for your child, you will have to get to grips with a lot of new information. There’s so much medical terminology around a CP diagnosis and it can be difficult to know which questions to ask and when you need to ask them. Hopefully, your child will be under the care of a team of doctors and clinicians who will monitor their development as well as support you and your family during this time.

At Enable Law, our specialist birth and brain injury lawyers have worked with many families who have been through what you are going through now.  There are common questions that families tell us they wish they had known to ask when their child was diagnosed.

We have put together some of the questions that you might want to ask your child’s doctors when they have been diagnosed with cerebral palsy.

Questions about your child’s disability

How has it happened?

Understanding how this happened and whether something went wrong usually really helps a family when a diagnosis is first made. It’s important to give your child’s clinicians a chance to explain the situation from the hospital’s perspective. If a mistake was made during delivery, you should be told about it now and there should be an internal investigation, which you should be involved in.

How did the brain become damaged?

Different kinds of damage to different areas of the brain can affect the symptoms and severity of any accompanying disability. Finding out how the brain is damaged will give you the information you need to start researching your child’s condition.

Questions about your child’s future health

 Because brain injuries are so complex, there are lots of questions you can ask about how your child’s health will be once they get older and what impact their condition will have on the length and quality of their life:

• Will they get better or could their condition improve with time?
• Will my child be able to walk and talk?
• Will my child be able to communicate?
• Will my child be able to go to school?
• Will my child need care and support?
• Will my child be able to work?
• Will my child be able to live independently in their own home?
• Is their condition life limiting?

What treatment is available?

There are a variety of different treatments that can improve the lives of those with cerebral palsy and understanding which ones your child will have access to can help you to plan ahead.

• What treatments are available?
• How do we get access to that treatment?
• Who will provide the treatment?
• Who will coordinate all the appointments?
• Will they need to have scans? How often?

Understanding who to go to with worries and concerns is going to be important for your entire family. There will be many professionals involved in your child’s treatment so try to keep a record of who is in charge of the different aspects of the treatment and your child’s overall health and development plan.

• Who do I go to if I have questions or if I am concerned? How do I communicate with the health services eg GP, OT, Paediatrician? What are the different roles?

Questions about support

When investigating claims involving brain injuries we are helped by medical experts whose training means they understand the nature and severity of the condition. We have asked some of those experts for the common questions they are asked and some of the issues they see families trying to work through. These are the questions they believe are most helpful for families to ask:

Education

Because the effects of a brain injury can be so varied, it might be some time before you know what your child’s educational needs will be. As they get older, it can be helpful to start asking questions that let you build a picture of what the challenges are likely to be in the future:

• Will my child be in mainstream education and access the national curriculum?
• Will they need support and additional equipment at school?
• How will my child get to school and who will fund this?
• How should I communicate with the school about my child’s needs?
• What should I tell the school about my child’s condition?
• Is support available for my child to complete their homework?
• How will a school manage tiredness and the physical/cognitive/emotional difficulties my child may have which may impact on their behaviour?
• How do I get an Education and Health Care Plan (EHCP) to support them in nursery and school?

Therapy

There will be a lot of different forms of therapy that your child may need to access such as Speech and Language Therapy, Occupational Therapy and Physiotherapy. Trying to find out more about the therapies available will help you to understand what they involve and how they will help your child. A successful medical negligence claim enables children to access additional therapies above those offered through the NHS but you should still ascertain what therapies are available to your child via the NHS and what you can do to maximise your child’s progress.

• How can we encourage and assist with our child’s development?
• What therapies are available? Eg Physiotherapy, Occupational Therapy, Play Therapy, Speech and Language therapy.
• How do we get access to those therapies?
• Who will provide the therapies?
• Who will coordinate all the appointments?

Support

The additional needs of a child with CP can be difficult for a family to manage, especially where there are other children to care for. Support is provided by lots of organisations and charities like Cerebra.  Make sure you ask about what is available so you don’t miss out on invaluable help.

• Where can we get support as a family?
• How do we manage behaviour in the home eg sleep, appetite, relationship with siblings, challenging behaviour, dealing with mood and emotion, techniques to use?
• Is any respite care available?
• Where can I get help if my child has sleep/continence/behaviour/eating problems?
• How do we maintain family autonomy and unity? How do we manage our other children’s/grandparents/external family members expectations and opinions?
• What benefits could we be entitled to?
• Who can help us to fill in the forms to get benefits?

The future

We’ve already looked at the questions you might want to ask your child’s treating clinicians but what about the more personal aspects of planning for the future? Some of these questions are longer term but planning in advance can give you valuable extra time to deal with these issues.

• Is there a risk to any future pregnancies or children I might have?
• How do I talk to my child about their injury and how do I explain to them about any limitations they may have?
• How do I explain to my child why they need different things to their classmates? One to one support, seating  etc
• What about when they go to secondary school, college or university? What will be put in place to help them? How can my child access educational support post 16?
• Will I be able to work? How will I manage to take them to appointments and hold down a job?
• How do you deal with adolescent behaviour in a brain injured child?
• What are the future obstacles/milestones in my child’s life?
• Will employment support be available for my child?

Questions about negligent treatment

These questions can’t cover all the worries and concerns that you may have and will have in the future but we hope this gives you a starting point from which to build a solid foundation for your child’s future.

When your child has an injury because something went wrong in the care either you or they received, investigating whether there is a negligence claim can help to find answers. This is a detailed process and if successful will provide your child with additional resources to ensure their care, aids and equipment and therapy needs are met for life  and a suitably adapted property purchased for them to live in with you.

Our team at Enable Law will work with you to determine what happened, whether the care provided was substandard  and, if it was, the specific care, therapy and equipment needs your child is likely to have  to make it possible for them to achieve their maximum potential during their life.

If you have questions about the care you or your child received and believe mistakes were made, we’re here to help. Contact us today.