Where are you in your journey?
If your child is showing signs of developmental delay and you are awaiting further assessment or diagnosis, and you would like to know what to expect and what support and help are available, you can learn more below.
Are you awaiting a diagnosis?
Knowing what to expect, questions you can ask and ways that you can manage this process can help you and your family. Please see below for answers to some of the questions that you may have along with links to practical information on the care, legislation, financial, parent and family support available as well as advice from other parents.
Commonly Asked Questions
It is important to remember that babies develop in different ways and at different rates, but you should trust your instincts and if you have any concerns about your baby’s movements or development, don’t panic but check it out and speak to your doctor or health visitor or paediatrician.
Key signs that you should seek professional advice are; your baby feels floppy, stiff or a combination of these, is not using hands or both sides of the body normally or is late in reaching milestones in sitting (8 months) and walking (18 months). You can read more about the signs of potential cerebral palsy here. There may be other reasons why your baby or toddler is showing these signs, but it is still important to check it out.
The GP or health visitor may watch your baby’s movements or carry out some simple tests. They will ask you about your concerns. It might be helpful to take some photographs or a video of your baby to the appointment to help the professional see why you are concerned.
If the doctor or health visitor shares your concerns, they may refer your baby to a paediatrician (specialist children’s doctor) or a paediatric neurologist (specialist in children’s brains) based at a children’s development centre or hospital for further assessment. You should not have to wait more than a few weeks for your specialist appointment, but if you have seen a GP or Health Visitor and have been referred to a specialist, but haven’t heard when the appointment will be, don’t be afraid to chase this up because it is important that your baby is seen by a specialist as soon as possible.
The specialist assessment will be longer (1-2 hours) and look at several aspects of your baby’s development as well as their movements using specially designed developmental tests. The assessment will be led by a paediatrician (specialist children’s doctor) or paediatric neurologist (specialist in children’s brains) or if your baby is still very young, a neonatologist (specialist in new born babies). The doctor will talk to you about your pregnancy and baby’s birth history, and about your baby’s general health and well-being. The doctor will explain what will happen during the assessment and ask if you have any questions.
There may be other professionals, such as a physiotherapist, occupational therapist and speech and language therapist or other specialists at the assessment (this is called a multi-disciplinary team or MDT), who will carry out the developmental tests as a team or separately.
Tests that may be carried out at the assessment may include;
- Qualitative Assessment of General Movements (sometimes referred to as GMs or Prechtel). This screens for abnormal movements which can be predictors of cerebral palsy. The best time to carry out this assessment is at about 3 months of age
- HINE (Hammersmith Infant Neurological Assessment)
- Bayley Scale of Infant and Toddler Development
The HINE and Bayley assessments include a range of activities that the therapists will carry out with your baby which will help them to assess what level of development your baby is at and any difficulties that they are experiencing.
The doctor may arrange for a brain scan (MRI or CT) and or an EEG to be carried out to give a more detailed picture of your baby’s brain development. Blood tests may also be taken.
When the team have finished their assessment of your baby, they may discuss their initial thoughts and give you advice as to what you can do to help your baby with their movements and general development. They will tell you what will happen next and ask if you have any questions at this stage.
Once you and your baby have been for your specialist assessment, the specialist team will discuss their findings and decide on whether or not your baby has, or is at risk of cerebral palsy.
You should hear back from the paediatrician within a few weeks, but again, if you don’t, chase up the results so that if your child does need extra help, this can start as soon as possible. If you are given a diagnosis of cerebral palsy, don’t panic – the multi-disciplinary team should answer any questions you may have and discuss with you what support will be put in place for your child and who will provide it – the care plan. They will also inform your GP and your local paediatric services team.
Please check to identify who is co-ordinating your child’s diagnosis. This may be your GP or your paediatrician. You and your child may be referred to a number of consultants and specialists. These specialists may work together in the same setting or hospital in a multi-disciplinary team or separately. For each appointment, try to ensure you are aware of the following:
- Who has referred you to this appointment or for this test or assessment
- What is the reason for the appointment
- What tests or assessments are going to happen either at this appointment or as a result of the appointment
- What is the expected timescale for an appointment for the tests/assessment
- What is the expected timescale for the results from this appointment/the tests and how will you receive these results
- Who you should contact if you have not heard back in the expected time
- What are the next steps
If you can, please keep a record of that information.
As much as you are able in advance of each meeting, try to think through and make a note of the questions that you would like to ask at the appointment. You may want to ask questions about:
- What tests, assessments or observations are needed
- Where these will be done, when and by whom
- What the timescale is for the test, assessment, or appointment
- Who you can contact and by what means if you have any queries outside of the appointment
Depending on the age of your child, you may also like to think about how to talk to your them about the appointment, explain what is going to happen and let them ask questions that they might have. Your paediatric team may have materials to help with this and there are some excellent books/stories/videos available.
We know that getting a diagnosis can be a stressful process that can take a long time and that is not always straightforward. Please always contact your GP if you are concerned about the service you or your child is receiving.
It is important to know that however worried you might be, you are not alone and there is help available at every stage. It is best to start with the health professionals who know you and your baby, but there are also many online forums and websites such as this one which can give you information and support. You can also contact specialist early intervention services who will be happy to answer any questions you may have. Also, parent groups, special needs play groups or online chat lines or groups can be a great source of support.
You could contact a specialist centre which provides therapy for children with developmental delay or cerebral palsy and tell them about your child. They will be happy to talk to you and may be able to offer you sessions in which qualified therapists will show you how to best help your baby or child with their movements and general development. Some of these centres offer teletherapy consultations if you are unable to travel in person. Please see here for a list of some of these specialist centres: https://www.cepeg.org.uk/resources/centres and https://bobath.org.uk/.
Many of these centres are charities who provide free services or charge a small fee.
YOU DO NOT HAVE TO WAIT FOR A FORMAL DIAGNOSIS TO ACCESS THESE SUPPORT SERVICES.
Contact The National Portage Association which is an organisation which provides home visits by trained practitioners to support early development for pre-school children with additional needs and their families.
The “Local Offer” on your local council’s website also has details of local organisations which offer help and support for children with additional needs and their families. You could also look at local groups such as baby massage, swimming, Tumble Tots etc. Which will be beneficial to your baby’s development. Your local children’s centre or health visitor may be able to give you details of suitable early years organisations.
The diagnosis process can take a while and is not always straightforward, but there are a number of things that you can do to help manage the diagnosis process so that you are prepared. These include keeping a record of each referral visit so that you have the history and also have identified who is coordinating your child’s diagnosis. Keep a record of:
- Which doctor or professional is referring you
- Who they are referring you to
- Which hospital, clinic or organisation and the date of the referral
- The reason for the referral
- The expected timetable
- Who to contact if you have not heard within the expected timetable
Between birth and 3 years of age, your baby’s brain is developing and growing very rapidly – more than at any other stage in life. As your baby moves, they are experiencing and learning about the world around them and so it is very important that if they are having problems with movements (sometimes called motor skills), they get expert help as soon as possible to minimize the impact on their learning and overall development. Seeking early help will also enable you to get the support you need as a new parent and will help the wellbeing of the whole family. Click here to see a short video explanation.
It is important to know that however worried you might be, you are not alone and there is help available at every stage. It is best to start with the health professionals who know you and your baby, but there are also many online forums and websites such as this one which can give you information and support. You can also contact specialist early intervention services (See: https://www.cepeg.org.uk/resources/centres and https://bobath.org.uk/) who will be happy to answer any questions you may have. Also, parent groups, special needs play groups or online chat lines or groups, including the Parents Connect service provided by the national charity, Scope (see here: https://www.scope.org.uk/family-services/parents-connect/) can be a great source of support.
Cerebral palsy is an “umbrella” term that is used to describe a range of movement disorders which can have an impact on many aspects of normal childhood development. It is sometimes referred to as “the cerebral palsies” or CP. It happens as a result of interference or damage to the development of a baby’s central nervous system (the brain and spinal cord) between conception and 3 years of age.
The way in which it affects body tone (muscle strength) and movement skills will depend on where the damage in the brain has occurred. The initial damage to the brain will not get worse but its effect on a developing child’s muscular and skeletal systems, and hence motor (movement) and functional abilities, may lead to problems with movement and posture as the child grows. It can also interfere with the way the child is able to physically interact with his/her environment, communicate, carry out self-care skills and learn from the normal activities of childhood. This is why early intervention is so important for children at risk or with cerebral palsy.
For more information about cerebral palsy, please click here.
The different types of cerebral palsy are:
- Spasticity: high tone (stiffness) with tense muscles. This is the most common type of cerebral palsy.
- Dyskinetic: sometimes referred to as dystonia, athetosis or chorea. This is characterised by fluctuating tone creating constantly changing involuntary movements which are difficult to control.
- Ataxic: poor sense of balance causing falls and stumbles
- Sometimes there may be a mixture of these presentations.
For more information about cerebral palsy, please click here.
There is often not just single cause of cerebral palsy and it can take some time to accurately establish the exact cause. Also, in almost half of babies who go on to have a diagnosis of cerebral palsy, there will be no obvious risk factors present. However, the following are risk factors which may result in cerebral palsy:
- Interruption of the blood flow or oxygen to the baby’s brain before, during or after birth
- Low birth weight
- Maternal disease, infection or pre-eclampsia during pregnancy
- Haemorrhages (blood loss during pregnancy or in baby after birth)
- Toxins passed to the baby during pregnancy, for example tobacco, alcohol, prohibited drugs
- Heart/respiratory distress
- Blood group incompatibility
- Multiple births
- Maternal history of miscarriage or still birth
- Genetic predisposition
- Post-natal infection, stoke, accidental or non-accidental brain injury in baby
It is very important not to jump to conclusions or blame yourself if your baby has signs of cerebral palsy. The exact cause will be different for every child and sometimes there will be no definite answer. Once a detailed assessment has been carried out, your medical team may be able to explain possible causes for your baby’s difficulties. However the most important thing is to ensure that you and your baby gets the help you need as quickly as possible to reduce the impact of their difficulties on their development and wellbeing.
If you have any concerns about the medical care that you or your child received during pregnancy, labour or after birth, in the first instance you should speak directly with your medical team, ie, midwife on call, obstetrician and/or neonatologist, maternity unit patient liaison team or your GP or health visitor to clarify any questions and discuss your concerns.
If you still have concerns, you may wish to seek independent legal advice. There are numerous law firms who specialise in this area (clinical negligence) and you should speak to more than one firm before deciding which is the best one for you. They should provide you with a free initial consultation from a specially trained legal specialist.
The information that follows has been provided by Enable Law.
If a child has cerebral palsy and their medical treatment before, during or after birth may be to blame for their condition, there could be a valid claim.
Common valid reasons for a claim include mistakes during pregnancy or labour that led to a child’s brain injury – such as where the baby suffered reduced blood or oxygen supply (temporary asphyxiation) as a result of failures.
This may include failures to:
- deliver a baby early enough via caesarean
- monitor the baby’s heartbeat
- respond appropriately to the umbilical cord being caught around the baby’s neck
- follow medical guidelines to ensure the safety of a child
- fully inform parents about risks such as those involved in choosing to give birth away from a hospital.
If you are unsure whether the harm to your child was avoidable or not, the law firm should be able to help.
In most circumstances it will cost you nothing to investigate a claim. The law firm will provide free initial advice about whether there is likely to be merit investigating a claim and how it can be funded. Enable Law | Cerebral Palsy Claims
This information note explains various ways a claim can be funded: Enable Law | How much will it cost me to bring a claim?
Whilst your child is under 18, in normal circumstances, you as a parent can make decisions including managing any health and financial arrangements on their behalf. However, you may be worried about what would happen to your child’s health or financial welfare if you should die or be unable to make decisions on their behalf, or if you believe that your child would not be able to manage their health needs or finances once they have reached the age of 18. You can get advice about the financial and welfare decisions that you may have to make for your child from solicitors who specialise in mental capacity.
Please ensure that you always speak with more than one source of information and that that source of information is approved by a governing body.
The Solicitors Regulation Authority regulates solicitors in England and Wales. A solicitor will be able to help you with information about:
- Powers of Attorney
- Living Wills
- Deprivation of liberty issues
- Property and financial issues
- Health-related decisions
- Managing Benefits
Scope also provides information about benefits and financial support available for families with disabled children: Scope UK | Benefits and money as well as information on legal advice available: Scope UK | Legal advice
A Parent's Story
“Cerebral palsy is a lifelong condition, there is no cure, and despite it being the most common physical disability in childhood there was little support in helping us as parents adjust to the new reality of our lives; a lifelong commitment as carers. That may now change thanks to the work and efforts of Action Cerebral Palsy; they are working hard to try to ensure that no more parents face the anxiety, loneliness and isolation that we have felt and that children and their families have the support and help that they need at every stage of their journey.”
– Helen Hunt, mother of Wilf
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