Health Continuing Care Packages For Children With Complex Needs
This care is the responsibility of your local NHS Clinical Commissioning Group (CCG).
If you consider your child has complex health needs, talk to a health professional (specialist nurse), who can, if appropriate, support you to request a continuing care assessment for your child. This assessment will look at all your child’s needs and the support you need to care for them.
A health assessor collects evidence of both your child’s met and unmet needs, drawing on the advice of the health and care professionals who are supporting your child. They have to judge what care your child needs that's over and above what would be expected for a child of the same age and stage of development. As part of this they'll ask you and your child for your views on care and support and any preferences you have. They use what's called a Children’s Decision Support Tool which sets out ten ‘care domains’:
- eating and drinking
- continence and elimination
- skin and tissue viability
- drug therapies and medicines
- psychological and emotional needs
- challenging behaviour
The ‘tool’ covers all aspects of your child’s life including sections on home life and their education. The assessment should always describe everything of relevance. You can see a copy of the Children’s Decision Support Tool form in the link at the bottom of the tab below if you open it – you don’t need to fill in this form, but it will give you an idea of what information's covered.
The health assessor then makes a case to a panel of experts who decide, based on the evidence and the recommendation, if your child has a continuing care need.
Page last reviewed /updated: February 2021
Next review due: February 2022
Getting Ready For Your Child’s Assessment
In the run up to your child’s assessment:
- Keep a diary of your child’s care needs throughout the day and night for a week. Make sure to record details of the time all these tasks take you on your worst day. A blank diary template is available here.
- Provide as much evidence of your child’s care needs as you can – from doctors, other medical professionals etc. SMA UK can provide letters of support.
- Make sure to cover any safety issues that mean you or a carer must be present and watchful – e.g. if there is a risk your child may vomit when using BiPap and there is a danger of choking.
- It’s important to document any emotional or psychological challenges for you or your child as well as physical challenges.
Your child’s medical team should provide information about your child’s condition. If though you would like more help with explaining the impact of your child’s SMA on them and your family, or any other support preparing for or during your child’s assessment, please don’t hesitate to contact SMA UK.
The people who work with you to assess your child’s needs and the needs of you as their carer should keep you well informed about who is doing what, how long the assessment will take and how any decisions and offers of care will be made to you. If you're not sure what is happening at any stage make sure to ask your assessor.
In England, once your child is of nursery or school age, the CCG should work with your local authority to coordinate the assessment and agree a wider package of continuing care than just health needs. This is as part of the process to develop your child’s Education, Health & Care Plan.
If you need any advice or support, contact your local health visitor, G.P or any member of your medical team.