For many parents, the most stressful time of all is when your child is first diagnosed, or is going through the process of trying to get a diagnosis. Here we look at getting a diagnosis, what happens if you don't get a diagnosis and offer strategies for dealing with this difficult time.
Your first healthcare contacts
Some of us know there’s likely to be something wrong before our child is born, some of us find out during the early years, some of us may be told about particular problems when we foster or adopt and a lot of us find out once our child starts school.
It may be that you have concerns about your child or a professional will pick them up. Usually the first person you talk to about the problem will be your health visitor, GP, or someone at your child’s preschool or school.
Health visitors will often be the first professional you encounter once you’ve settled your new baby into your home. They visit all parents after the birth of a baby (at 10 to 14 days) and when the baby is six to eight weeks old. They will also contact or visit you when your child is one, and at two/two and a half, or if you move into an area with a child under five. They are usually based at your local Children’s Centre where they also run drop in information sessions that aim to answer anything from breast-feeding queries to sleep difficulties.
It is the health visitor’s job to assess the development of children under five. If, during these assessments, they decide that additional help or support is required, for you or your child, then they will plan this with you and see you more often. They call this their enhanced service. They may refer you to other professionals where appropriate – for example, the Pre-school Special Educational Needs Service (PRESENS) if your child needs specialist support for their early education. Or the speech and language therapy team if your child has difficulty swallowing. They will work with the identified professionals to make sure that your child gets the right support and that services are coordinated.
Health visitors are also a great source of general information about local groups, activities and ways of supporting your child’s health and development so try and make use of their local knowledge.
There are also specialist health visitors for children with additional needs, based at the Seaside View Child Development Centre. If you have been referred to Seaside View, they will support you and your family and offer information about and liaise with local services. Read more about specialist health services.
Your GP may be one of the first people you discuss your child’s difficulties with. They may also be the best person to ask if you think your child would benefit from seeing a specialist health professional.
It’s important to keep up the relationship with your GP, even if most of your child’s subsequent treatment is at a clinic. Support from GPs can be helpful if you’re trying to speed up appointments or find respite care. And of course children with additional needs get ordinary illnesses, just like their brothers and sisters.
It’s easy to forget that while specialist doctors are working with children similar to yours all the time, your own GP may only have a few children with additional needs in the practice. If your child has a very rare condition, they may be meeting it for the first time. A good GP will appreciate all the information that you are able to give, and respect the skills and knowledge you are sure to acquire.
Some parents, though, find it useful to have a different GP from their children, believing it gives them a better chance of being seen as an individual rather than as the parent of a disabled child. If your relationship with your GP isn’t working, it’s worth considering changing to another within the practice or, as a last resort, to another practice altogether. These days the easiest way to find a new GP is via the NHS Choices website. You can use a search facility to find all GPs in your area who are currently accepting new patients. You can also read quite detailed reviews of their service from other patients and see an overall rating they received from patients according to key criteria.You can also find information on local GPs and other health and social care services on Brighton’s new Information Prescriptions website. If you’re not online, you should be able to find a list of local doctors at your library or the Citizen’s Advice Bureau.
Your child’s school or preschool
You may find that the first you hear about your child having any difficulties is from their nursery worker or class teacher. Perhaps they’re having difficulty getting along with other children at nursery or perhaps they’re having trouble reading or concentrating during lessons. The teacher may get you to discuss their difficulties in more detail with the special educational needs coordinator (SENCO) or suggest your child is referred to one of the specialist services, for example the educational psychology service, for further assessment. We discuss the special educational needs process in much more detail in the Education chapter. If your child has special educational needs (SEN) to the extent that they are assessed for an Education, Health and Care Plan, this plan should include any health needs that are related to their SEN. We discuss the special educational needs process in more detail in the Education section.
Another person that you might talk to about your child’s difficulties at this point is the school nurse. He or she can check your child’s health and development and refer you to other people if necessary.
Once you have gone through the usual channels, any of the above may refer you to one of the specialist health services at the Seaside View Child Development Centre, CAMHS (The Child and Adolescent Mental Health Service) or the Royal Alexandra Children’s Hospital. These days it’s also likely that someone will do a Common Assessment Framework (CAF) assessment with you before you get referred for specialist disability services.
Your feelings around diagnosis
All parents feel and react differently to the knowledge that that there’s something wrong with their child. Many parents feel completely devastated to start with, then somehow angry – ‘Why us? Did we do something wrong? Could we have done anything to prevent it? And, certainly, all parents can feel bereft – ‘This isn’t the child I expected. I won’t be able to cope, I don’t want to have to cope’. But you can be sure that whatever you’re feeling at this moment – anger, despair, fear or overwhelming protectiveness – somebody has been there before.
Sometimes parents want medical diagnoses confirmed. Usually this is not because they don’t trust the doctor, but simply that they need to feel absolutely sure that they have explored every possible avenue on their child’s behalf. Some doctors are very sympathetic towards these feelings. Your child’s GP or consultant may be willing to refer you to a different consultant for another opinion, but they don’t have to do this if they don’t agree that it’s necessary.
Parents who can afford to might choose to approach consultants on a private basis. Private health care is very expensive and it is not at all easy to discover for yourself who is an expert in any particular condition. You may be able to get advice about these matters from The Patients’ Association, the Care Quality Commission or Healthwatch
Whatever your child’s diagnosis, talking to someone who understands can really help. Face 2 Face is a local befriending service, run by Scope, which offers emotional support to parents of children with additional needs at any difficult time, but particularly at the time of diagnosis.
If your child has a specific condition, the relevant local or national support group, may be able to provide advice or much needed support. Look for parent led local groups like mASCot or T21 on our ‘parent support groups‘ page. You can also find more organisations for specific conditions in the Useful Contacts section. Another source of information is Contact a Family, which holds details of even some of the rarer conditions.