Health Services to support children with specific medical conditions

For children who have continence needs, the assessments are usually undertaken by your child’s Health Visitor, Specialist Health Visitor, or School Nurse, including the Special Schools Nurses. Occasionally the assessments might be undertaken by the Children’s Community Nurses, for example if your child attends a school outside of Hammersmith & Fulham, Westminster, or Kensington and Chelsea. Your child will need to be registered with a GP in one of these boroughs in order to be assessed for continence products from CLCH.

Many children will be able to be toilet trained by the age of 3 or 4 years. However, for some children this can be challenging or delayed for a variety of reasons. If your child is not able to be toilet trained by the age of 4, then CLCH will consider to supply pads or nappies to support child. Alternatively, there are products available on prescription which may be suitable.

An assessment will be undertaken which will assist the assessor to signpost you to groups or professionals who may be able to offer additional support or equipment to you and your child.  Such services might be a toileting group run by the Child Development Service, or the Enuresis Clinic. The assessment will also consider what size of nappies or pads are suitable for your child and a maximum of four continence products per 24 hour period will be supplied; however the service does not supply pull up pants or bed protection. There is a small range of nappies and pads available.

Deliveries to your home are usually every 8 – 12 weeks and it is important to use these across the whole time period because the service cannot supply additional products. You will be provided with a telephone number in order to organise your child’s delivery.  Children receiving continence products are assessed annually to review bladder and bowel health and maintain supply of products. This will ensure that the product remains suitable for your child. Of course you can contact your health care professional in the meantime if you want the size changed.

Occasionally none of the products in the catalogue are suitable. In cases like this, it may be possible for a Personal Health Budget to be agreed.  This will allow for an agreed financial package in order for you to source and purchase your own choice of products.  Children’s Community Nurses and Special Schools Nurses are able to assess for a Personal Health Budget (PHB) – they will obtain advice from professionals who work with your child and also cost out a range of products.  The Children’s Health Commissioner will decide whether a PHB is appropriate and if this is agreed, it will be set up through the Local Authority payments scheme.  This will be explained to you by the relevant direct payments officer, or local social services representative.

Who to contact

School Nurse or the Community Children Nursing Service team.

For additional help and support for children’s continence issues you can also visit www.eric.org.uk and www.bbuk.org.uk.

Children who require Adrenaline Auto Injectors will receive ongoing prescriptions from their GP.  Adrenaline Auto Injectors should last for 18 months. Schools are able to purchase emergency Adrenaline Auto Injectors if additional pens are required.

Training can be accessed through this link:  https://www.allergywise.org.uk/

The Bi-Borough School Health Service can also offer allergy awareness sessions on request.

A wheeze is a high pitched musical noise heard when a child breathes out.

Wheeze caused by an infection or virus is a common condition in childhood and occurs when a cough, cold or chest infection irritates the breathing tubes that carry air in and out of the lungs. Virus induced wheeze is most common in children of pre-school age. One in three children will have had an episode by the time they are three years old. This may occur each time the child has a cold virus, but yet they are normally well and symptom free when they don’t have a cold. If your child was born early, has had bronchiolitis or is exposed to cigarette smoke they are more likely to have episodes of virus induced wheeze.

Children with viral wheeze are managed by their GP.

As part of the school admissions process, all schools (mainstream and special schools) should complete a health check.  If it is determined, that a child has asthma, parents should be asked to share the asthma care plan with the school, or the GP can be contacted directly for a copy of the asthma care plan.   GPs are responsible for providing an asthma health care plan (unless the child has more significant asthma difficulties where they are seen by specialist services).  If there are difficulties in obtaining the asthma care plan from the GP, the Bi-Borough School Health Service are able to assist with chasing this for you.

 The Bi-Borough School Health Service offers a health questionnaire to all children starting school at Year R and Year 7. Staff in the service provide support and advice for any children with identified asthma. Public Health School Nurses also receive all notifications for children attending emergency services due to asthma and will follow up with advice and support to the school and the family. School nurses provide asthma awareness sessions to all schools in the area.

 For out of borough GPs, all schools need to liaise with that GP directly. If you have specific problems in obtaining the asthma care plan for an out of borough GP, let the Designated Clinical Officer (DCO) know and they will escalate this to the DCO in the relevant borough. 

 The Specialist Asthma team supports the network around the child, which includes GP practices and the Bi-borough School Nursing Service, in order for them to support CYP and schools.

For further advice and guidance please contact the Bi-borough School Health Service in the first instance or visit https://www.schoolhealth.cnwl.nhs.uk/. 

All children within a school or educational setting should be provided with a specifically written healthcare plan supplied by their acute managing hospital. This team can be identified by asking parents/guardian for a clinic letter that will have been sent to the school.

The Bi-Borough School Health Service can support review of care plans and offer awareness sessions to schools on request.  A child has a specialist need will be supported by the specialist team in St Mary’s Hospital.

 The Specialist Diabetes nurse at Imperial College Healthcare NHS Trust is able to offer general diabetes training for CYP within RKBC / WCC schools and for professionals working with children.

The Imperial College Diabetes team also offer bespoke training based on the family's and school's needs. All Children’s schools, on diagnosis or moving to a new school, will be offered face to face (or sometimes virtual) training and an individualised care plan. They will support additional training for any issues which arise - either face to face or virtual.

The Imperial College Diabetes team invite all schools via a central contact to a school education virtual sessions which occur 6-8 times per year (based on the last 2 years). These sessions last 3.5 hours and gives an overview of what is needed to keep children safe in school; including carb counting and videos showing the practical elements.

Care plans should be updated annually, and these are done at the request of schools.

For further advice and guidance please contact the Bi-Borough School Health Service in the first instance. or the Imperial College Children's Diabetes Team. 

For children and young people with epilepsy, parents or carers need to provide the educational setting with a letter or epilepsy passport from the paediatrician confirming the diagnosis. This should include information on triggers and seizure types, prescribed anti-epileptic drugs and guidance for administration of emergency medication. This information can be transcribed into a Health Care Plan, which the Epilepsy Specialist Nurse or Bi-Borough School Health Service can assist with, if the CYP is attending a school or other educational setting. The Epilepsy Specialist Nurse can complete a Health Care Plan for CYP not attending school if required.

Bi-borough School Health Services also offer yearly epilepsy awareness sessions to all local state funded schools in the area.

If the child or young person attends a special school, training will be provided for all relevant staff on site, by the Special School Nurse or by the Bi-borough School Health Service as appropriate. 

For children requiring emergency rescue medication such as Buccal Midazolam the Epilepsy Specialist Nurse can arrange training. All identified staff supporting the CYP in school should undertake general ‘Epilepsy awareness’ and ‘Emergency management of a seizure’ training. Online training for education settings can be accessed through these links:

 https://www.youngepilepsy.org.uk/guide-for-schools/epileptic-seizures/   

 https://www.epilepsy.org.uk/training/for-schools

 www.youngepilepsy.org.uk/guideforschools

The Specialist Epilepsy Nurse can also oversee the support for children and young people and their networks, by supporting the community paediatricians during diagnosis and investigations, management and care planning, review and transition.

For further advice and guidance please contact the Specialist Epilepsy Nurse at the Kensington and Chelsea and Westminster Children's Neurology Service.

The Specialist Haemoglobinopathy nurse works in conjunction with the North West London Haemoglobinopathy Network to support children and their families manage their health condition in the community, by providing regular home visits, individual school healthcare plans in and training to schools and primary care staff.

Referrals to the service are accepted from the National New-born Screening Programme, self-referral from a parent/ carer, primary care, health & allied professionals. Further information can be obtained from the Sickle Cell Society website.

For further advice and guidance please contact the Specialist Haemoglobinopathy Nurse: [email protected].

Speech and Language Therapists support children and young people (CYP) up to the age of 18 who have difficulties with eating and drinking e.g. chewing, difficulty progressing through textures or signs the CYP may have difficulty swallowing (e.g. coughing when drinking, recurrent chest infections). We do not see CYP who are fussy eaters or who have sensory issues around eating and drinking. For children who present with these difficulties (for example, accepting of specific brands, colours or textures of food only, intolerance of foods mixing/touching on the plate), consider referral to Occupational Therapy (for input regarding sensory issues) and/or clinical psychology or CAMHS (support regarding behaviour).

This service is for CYP who have eating drinking and swallowing difficulties with GPs within the inner London boroughs of Kensington and Chelsea and Westminster. We also provide a service to all CYP with dysphagia attending QEII School (up to the age of 19) regardless of home borough/GP.

The service operates an open referral system (referrals can be made by parents and carers, healthcare professionals, education colleagues and social services). A dysphagia service referral form is available on the following link: Eating_Drinking_and_Swallowing.

The completed form should be sent to [email protected].

We aim to see referrals within 2-4 weeks depending on the urgency of the referral. We offer appointments during standard working hours, the first appointment will most likely to take place in clinic or at the CYP’s school. We also offer some appointments at home or virtually where needed.

Follow up appointments will be made if it is felt the CYP would benefit from further advice and intervention to keep them safe when eating and drinking. We will set goals of what to work on and share strategies with the CYP’s parents/carers and school staff to support identified needs. A report and care plan with specific recommendations and strategies may be written and shared with key people caring for and working with the CYP. Referrals to other specialities may be recommended and discussed, for example Videofluoroscopy, Ear Nose and Throat, Respiratory, Gastroenterology or Dietetics.

We offer training to school staff to support the safe management of children with eating, drinking and swallowing needs in schools as well as individualised training to carry out eating, drinking and swallowing care plans. 

Information can also be found in this service leaflet (PDF).

For specific queries, please contact [email protected].

Where children are receiving care under a specialist hospital, the treating professional should produce a Health Care Plan.  Guidance is often provided in the form of a letter.  Schools may require support in interpreting information contained in letters. 

In mainstream schools, Public Health School nurses should be approached for support. 

In special schools, the Special School Nurse (SSN) should be approached for support. 

Parents are responsible for ensuring the school team is kept up to date with any changes to care need and provide the most up to date letter. 

If you would like to discuss or clarify any of the above please contact the School Health Service or the Special School Nurses (under the Children’s Community Nursing team) as appropriate.  

Access contact details on the following links.

Bi-borough School Health Service or the Community Children Nursing Service team.