frequently asked questions

My child has a medical condition. How can I get help at home?

If your child has a nursing need you can be referred to the CCN team by any other professional involved in their care – for example Gp, Paediatrician, school nurse, hospital nurse/ doctor. If you do not have anyone who can/ will do this it is okay for you to call the team and discuss a ‘self referral’.

We look after children with complex and palliative conditions, manage home enteral feeding, home oxygen and provide wound management amongst many other things. We are happy to discuss any possible referral even if you think your child’s needs are not on our list.

What will the CCN team do?

We will start by coming to meet you and your child and completing an initial assessment. This involves listening to what your child’s needs are and discussing what we can do to support you. We can help you and your child in lots of different ways including hands on clinical interventions, training you or other family members to provide the care, co-ordinating services you access and giving emotional support.

If we do not think we are the right team to support you and meet your child’s needs we will discuss this with you and try to point you to the right service.

My child’s condition is very rare. How will you know what to do?

We have a wealth of experience in managing many different conditions. If we require additional training or information to enable us to support you we will access this. Many conditions display similar symptoms and again we have a great wealth of experience in managing many of these so we will be able to support with symptom management. We are very happy and keen to work with other professionals and will happily speak with and work alongside a Consultant or other healthcare professional.

I live in Solihull but I don’t know if my Gp is a Solihull registered one.

You can ask your Gp receptionist and they should be able to tell you which Area your Gp is registered to. If you are still unsure or cannot find out this information feel free to give us a call and we will check for you. If your Gp is a Birmingham or Warwickshire registered service you can access a similar service to ours – we would be happy to give you the contact details if your Gp/ referring professional does not know them.

I work from 9am til 5pm. How can I arrange a home visit?

We work throughout the year from 8am til 6.30pm and on Saturdays and Bank Holidays so it is unusual for us not to find a time to be able to visit you. If it is your child we need to see urgently we would be happy to review them in another venue e.g. at their school, with a different family member as long as the venue is within our area, there is a responsible adult with your child and you are happy for us to see them without you being present. We would always contact you following any review you were not at to let you know what we had done/ seen/ needed to do. We would not carry out any unplanned procedure without speaking to you for your consent first.

Will my child’s records be confidential?

All health care records are managed within strict Trust policy and procedures in terms of Data Protection and Confidentially. We manage most of our records electronically and will ask for your verbal or signed consent at the first visit to ‘share’ your child’s records with the relevant professionals also using our system. This would include professionals like your Gp, physio, OT, Community Paediatrician, Oncology Nurse for the period your child is receiving ‘active treatment’ from each of them. Once discharged from a particular service they can no longer routinely access your child’s records. We find sharing of information very valuable in providing a good continuity of care and to reduce the number of times you have to ‘tell your story’. We can send other professionals involved secure messages through the electronic system making communication very efficient. If you would like to view your child’s record at any time or have copies of any care plans/ assessments for your own reference you can ask your community nurse.

My child has a life limiting condition and we need support now and in the future. What can you do to help?

We care for many children with life limiting conditions. Once we have completed our initial assessment we will work with you to form a plan of care and support for you and your child. It may be that you do not need a huge amount of help initially but we will get to know you and your child, keep in regular contact and then be a familiar face when you do need help. There are some children that experience significant difficulties for a number of years and then settle for a long period before they need any help again – we may discharge your child from our support during that time but you will be given everything you need to be able to contact us/ refer your child back to us again whenever you feel it is time. We have some children who are managed by their school nurse during the school term time and come back to our service for the school holidays, particularly the long 6 week summer break. We will discuss this with you if we feel it is relevant to do so.

What if my child needs your help outside of your working hours?

We work with you right from our first meeting to determine exactly what your child’s needs are. We try really hard to manage your child within a ‘normal’ daily routine for them and we support you to learn more about your child’s condition; hopefully empowering you and giving you the skills to meet their needs when we are not around.

There will be times when you will need additional help and we will help you formulate a plan of ‘what to do out of hours’ including relevant care plans, emergency procedure plans, contact numbers, local hospital details and supporting letters/ documents so this is not too traumatic for any of you.

We would like to take our child on holiday but don’t know how to arrange the support we need.

We are happy to help you plan for your child’s care during a holiday. Every child’s and family’s needs are different so please ask your community nurse who will help determine exactly what we need to plan. We are happy to contact hospitals and community teams in other areas for planned and emergency care provision and will provide care plans and supporting letters if they are required.

My child needs an Education, Health and Social Care Plan. Can you help?

If your child meets the referral criteria and is accepted onto our caseload we will support EHCp applications as best we can.

We are happy to attend multi-professional or Child In Need meetings to discuss your child’s needs and will complete any requests for information in relation to the plan. If your child remains on our caseload we will be involved in all annual reviews of their plan to ensure it still adequately meets their needs.