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What evidence is available?
| Sources of Evidence |
Information Provided |
Limitation of Evidence |
| Claimant/carer |
First source of information |
May not be objective, does not have specialist knowledge |
| GPFR |
The diagnosis will be known to the child’s GP but they will rarely see them. Shared care arrangements are between the local and regional hospital rather than the GP. The community nurse may see the child regularly. The GP will be able to provide information such as lung function test results only if the hospital has provided those results to the GP. The Cystic Fibrosis Centre where the child attends for their annual review will always be the best source of further information. |
The GP may only be able to confirm medication prescribed for children with cystic fibrosis as they usually receive their care via the cystic fibrosis care centre. |
| Hospital FR |
The best source of information on children with cystic fibrosis will be the specialist nurse or the consultant paediatrician at the cystic fibrosis care centre. Each child will have their own cystic fibrosis consultant and nurse. They will be able to provide recent lung function test results and details of medication and physiotherapy required. Records of the annual review summary or findings will be available for every child. This information is ideal objective medical information that can be used to determine what care needs are present in the individual child. |
Details of which investigation results can be used to confirm disability affecting walking and care needs typically associated with various treatments are in the guidance. The medical evidence may contain a lot of complex information that needs sifting through. |
