My Journal

My JournalLife after childhood meningitis and septicaemia

Freephone helpline 0808 80 10 388 www.meningitis-trust.org

Freefone helpline 080 8800 3344 www.meningitis.org

Produced by:

IntroductionThis journal and booklet have been created by the Meningitis Trust and Meningitis Research Foundation to provide information about meningitis and septicaemia in children and young people; recovery, potential after effects, the follow-up care you should receive, and support that is available to you. The journal allows you to keep a very personal record following your child’s experience of meningitis and septicaemia. Extra information and downloadable pages to support this resource are also available online.

Guidelines for managing children with bacterial meningitis and septicaemia, produced by the National Institute for Health and Clinical Excellence (NICE), England, Wales and Northern Ireland, and the Scottish Intercollegiate Guidelines Network (SIGN) recommend that health professionals give parents or carers and/or children and young people information about recovery, potential long-term effects and how to get follow-up care before they are discharged from hospital.

Endorsed by:

How to use the journalThis journal is designed to be your child’s personal record following their experience of meningitis and septicaemia. Every child’s experience can be very different; for some the recovery process will be very quick and they will not be left with any long-term effects. Other children may take longer to recover and a few will be left with permanent disabilities. Because of this, the journal has been designed so it can be used to suit you and your developing child, as little or as often as it’s needed.

Additional information is also available online, which you can download and add to your journal. These resources are available from:

www.meningitis-trust.org/recovery or www.meningitis.org/recovery

If you have any questions or would like to discuss any of the topics in the booklet or journal you can call either the:

MeningitisTrustHelpline08088010388 or MeningitisResearchFoundationHelpline08088003344

This record can be used by you, your child and others helping to care for your child, ensuring that everyone has a clear up-to-date picture of your child’s progress, support and development.

Take this journal with you whenever you visit:

• Hospital – paediatrician or other specialist • GP • Health visitor • A therapist, such as physiotherapist, occupational therapist, speech and language therapist or dietician • Dentist • School nurse, additional carers, such as respite • Any other health appointment where you think it’s appropriate

It is important to share the information in this journal with others such as:

• Childminder • Playgroup or nursery teacher • Primary teacher • Secondary teacher • Special education needs and disabilities co-ordinator • Anyone else involved in the care of your child, education or social care appointments, sports and recreational activities

Who to share this Journal with

1 Personal details and records

2 Hospital discharge and follow-up

3 After follow-up

4 Continued care and appointments

5 Information about after effects and aftercare

6 Further information and support

Contents

Personaldetails and records

The first section of this journal can be used to record all the information about your child’s experience of meningitis and septicaemia, from hospital discharge onwards. Information you and your child want to share with others can be easily accessed and updated whenever necessary.

Child’sname:

Dateofbirth:

NHSnumber:

GPname:

Practiceaddress:

Practicetelephone:

Typeofmeningitisorsepticaemiayourchildhad:

Your details

Parent’s/carer’sdetails:

Name:

Contactnumber–day:

Contactnumber–evening:

Photograph

Some children may be treated for their illness in more than one hospital or ward. It can be useful to keep track of where your child was treated by filling in the boxes below:

Dateofadmissiontohospital:

Nameofhospitalwhereadmitted:

Nameofhospitalward:

Dateofdischargeortransfertoanotherhospital:

Hospital details

Dateofadmissiontohospital:

Nameofhospitalwhereadmitted:

Nameofhospitalward:

Dateofdischargeortransfertoanotherhospital:

It is useful to record the contact details of the discharging hospital in case you need to get in touch with the team who treated your child. If you have been given a discharge letter or notes, itisagoodideatokeeptheminthisjournal.

Dateofdischargetohomefromhospital:

Nameofdischarginghospital:

Contactdetailsfordischargehospital:

Nameofyourchild’sconsultant:

Theircontactdetails:

The following pages can be used to record your child’s prescribed medication. This may be short-term when leaving hospital or it may be ongoing.

If your child has been prescribed medication after discharge from hospital, this is likely to be listed in your child’s outpatient letter(s). Many children’s departments now routinely send copies of outpatient letters to parents and carers. If you need to share this information with others caring for your child, keep these letters filed in this book. If you do not have these letters, you may need to get your doctor’s signature to verify information is correct.

Askyourdoctoriftheycancomplete,signandstampthisbookwhenanychangetomedicationismade. This can be useful if waiting for letters causes you delays, such as ordering repeat prescriptions or respite care needing verification of medication changes.

Record of medication

Nameofpatient:

Nameofmedication:

Date:

Dosage:

Howit’sgiven: Whenit’sgiven:

Doctor’sname: Date:

Signature: Stamp:

Notes–(suchasrecordofallergies,re-orderdateforrepeatprescriptions):

Many medicines can be delivered in a variety of ways; if your child has difficulty taking prescribed medicines always ask your doctor if there are alternatives.

Itissoimportanttogetmedicationright.Toavoiderrors,neverbeafraidtoaskquestions.You can download more of these pages online:www.meningitis-trust.org/recovery orwww.meningitis.org/recovery

Nameofpatient:

Nameofmedication:

Date:

Dosage:

Howit’sgiven: Whenit’sgiven:

Doctor’sname: Date:

Signature: Stamp:

Notes–(suchasrecordofallergies,re-orderdateforrepeatprescriptions):

Many medicines can be delivered in a variety of ways; if your child has difficulty taking prescribed medicines always ask your doctor if there are alternatives.

Itissoimportanttogetmedicationright.Toavoiderrors,neverbeafraidtoaskquestions.You can download more of these pages online:www.meningitis-trust.org/recovery orwww.meningitis.org/recovery

These pages provide space for you or your child to record your own notes that you feel would help others to understand your experience of meningitis and how it affects day-to-day life. The more information you can provide about your child, the better.

You may want to record things like:

• Your child’s preferred name (nickname) • Interests • Allergies • Likes/dislikes • Preferred method of communication • Dietary requirements • Name of school • Any other information you think is relevant

Sometimes these small details can make a big difference to those helping you care for, or supporting your child, and means you don’t need to explain this information over and over again.

It’s also useful to record information on these pages that will help your child share information with others as they are able to take more responsibility for their own health or when they leave home.

Youknowyourchildbest.Writedowneverythingyouthinkisimportantforotherstoknow.

All about me

All about me

You can download more of these pages online:www.meningitis-trust.org/recovery orwww.meningitis.org/recovery

All about me


The following notes pages can be used to record any complications and after effects your child may have as a result of meningitis or septicaemia (some doctors will call these sequelae).

If any after effects were identified in hospital, the doctors or other health professionals looking after your child will discuss these with you before discharge. You can complete the notes pages yourself, but it may be beneficial to complete this with the paediatrician at your child’s routinefollow-upappointment4-6weeksafterdischarge.

After effects

Complications and after effectsThe following pages will prompt you to write down:

• What after effects or complications your child has so far • The impact these have on day-to-day life • Treatment or support received/needed

Usingthesenotespages,photographsandvideohelpscreatethebiggerpicture,soanyoneinvolvedinthecareofyourchildcaneasilyseehowtheyhavebeenaffectedbytheirillness.

In sections 2 and 3 of this journal there are spaces to record any other concerns that you have about your child’s health or behaviour that you think may be related to their illness, either in the first few weeks after discharge or in the months and years that follow.

Aftereffectsorcomplicationsyourchildhas.Includedates:

Theimpactthesehaveonday-to-daylife:

Treatmentorsupportreceived/needed:

Complications and after effects












Hospital dischargeand follow-up

Before discharge, doctors should explain potential long-term effects of meningitis or septicaemia with you and your child’s likely pattern of recovery. You should also have a chance to ask questions and raise any concerns.

Health professionals who have been caring for your child may hold a ‘discharge planning meeting’. Doctors usually discuss any discharge plan with parents, and if a meeting has taken place it should be possible to see the meeting notes. Itisusefultoaskforacopyofthehospitaldischargeletter/notestokeepinthisbook.

You can ask about the time limit for directly accessing the ward that treated your child in case there are problems soon after discharge. The discharging paediatrician should let you know the time frame during which you can contact the ward if you have concerns.

There is space to write the contact details of the discharging hospital and consultant paediatrician who treated your child in section 1.

ThehospitalshouldalsoinformyourGP,healthvisitorandschoolnursethatyourchildhashadmeningitisorsepticaemiaandproviderelevantdetailsofanycareplanifonehasbeenput inplace.

Notes from hospital at discharge

Most children who have meningitis and septicaemia make a good recovery, and serious long-term after effects are usually identified before discharge. Generally, children who have been more unwell in hospital, for example with convulsions, coma or severe septicaemia, are more likely to have after effects.

Ifaftereffectsareidentifiedinhospital,follow-upcareshouldbediscussed,andappointmentsarrangedforyoubeforedischarge.

There is space to note down the after effects that doctors have identified so far and any treatment that will be provided in section 1.

Some children recover early and rapidly and can return home before their antibiotic treatment has finished. These children sometimes return to hospital daily to have intravenous antibiotics or may have them given at home by a community children’s nurse. These children usually recover well.

Regardless of the severity of your child’s illness and the time spent in hospital, itisimportantforeverychildtohaveahearingtestandafollow-upappointment. If you have been discharged from hospital without these appointments please contact the hospital to arrange them. It is also a good idea to make an appointment with your child’s GP, so they can see how your child is getting on and be aware of any concerns or questions you may have.

Follow-up care

It can take many months to recover from meningitis and septicaemia, although some children are back to their normal activities within a matter of weeks.

Many parents find leaving hospital an anxious time because doctors are no longer on hand to answer questions. If you have any concerns about your child after discharge from hospital, write them down on the following pages. Please read page 11 in ‘Your guide’ to get an idea about common concerns that parents have after discharge. Bring this journal with you to your child’s 4-6 week review so that you can discuss these notes with the paediatrician.

Youknowyourchildbest,neverbeafraidtospeakup.Ifyouareconcernedforanyreasondonotwaitforthefollow-upappointment.Youcanspeaktoyourchild’sGPatanytime.

Inparticular,ifyourchilddevelopsafever,rashorlimbpainwithintwoweeksofbeingdischargedfromhospitalthenthisneedsurgentmedicalattention.

You may want to continue recording any ongoing concerns in your child’s journal during the year after your child’s illness, sometimes longer. There is space for you to make further notes in section 3.

Allhealthprofessionalsshouldbeawareofthepossiblelatedevelopmentofaftereffects.Ifyouareconcernedaboutyourchild’srecoveryorpossiblecomplicationsatanytime,speaktoyourGPorasktobereferredbacktothehospitalwhereyourchildwascaredfor.

Issues and concerns during the first few weeks of recovery

Helplines:MeningitisTrust08088010388 / MeningitisResearchFoundation08088003344


Includedatesinyournotes.Thiswillhelpothersunderstandwhathasbeenhappening.



Includedatesinyournotes.Thiswillhelpothersunderstandwhathasbeenhappening.


Itisvitalthatahearingtestisdonewithinfourweeksofyourchildbeingwellenoughtotest, because hearing loss is the most common after effect of meningitis. Also, when meningitis severely damages the inner ear, the inner ear canals can harden rapidly; a process known as ossification. If cochlear implantation is needed to restore hearing, assessment and referral must be prompt, because ossification can reduce its effectiveness.

It is always important to identify hearing loss early in children because any level of hearing loss can be detrimental to your child’s development. Evenifyouhavenotnoticedanychangestoyourchild’shearing,youshouldalwaysattendthisappointment.

Hearing test

Date Time Clinicdetails Telephonenumber

More information about hearing tests is included on page 9 of ‘Your guide’.

Everyoneshouldbeofferedafollow-upappointment4–6weeksafterleavinghospital. This is to discuss how the recovery process is going and any potential complications you might be concerned about. There is space earlier in this section for you to record any concerns you have in the first few weeks after discharge. Take any notes or questions you have written here to your appointment with the paediatrician. This way you won’t forget to ask about them.

Some parents are so relieved to get their child home from hospital that they do not want the upset of having to take their child back again for further appointments, but missing the opportunity for follow-up with the hospital can put your child at a disadvantage. Some after effects can be subtle and hard to identify. If your child has been affected by their illness it is better for any problems to be recognised early so that they can be treated as soon as possible.

Follow-up appointment with paediatrician

Evenifyoubelieveyourchildhasmadeacompleterecovery,pleasekeepyourfollow-upappointment;itcanbereassuringforyouandyourchildtoknowthatnofurtheractionisneeded.

Follow-up appointments:

Date Time Dept/Consultantdetails Telephonenumber


Follow-up appointments – my questions


Afterfollow-up

This section of the journal is for you to keep notes on your child’s progress and continued recovery beyond their routine follow-up appointment with the paediatrician.

The recovery processChildren can be affected by meningitis and septicaemia in many ways, so their recovery will also be very individual. The information you record in this section of the book will depend on the age of your child and how severely they were affected by the disease.

Bacterial meningitis and septicaemia are serious illnesses. Even if there are no long-term after effects, it is likely that your child will take some time to recover (see page 11 in ‘Your guide’). Fortunately many of the problems that children and families face get better within the first few weeks and months of being discharged from hospital, but it can sometimes be helpful to keep a record of any ongoing concerns about your child’s health or behaviour for at least a year after the illness. This can help you see some problems improving significantly over time, but also importantly may help you to identify problems which are persisting. If you are concerned for any reason you can speak to your child’s GP and take this journal with you.

It can sometimes be hard to tell whether very young babies have after effects because they have yet to reach developmental milestones. A well known checklist, the ‘birthtofivetimeline’ can be used to see when your child may gain certain skills and learn new things. The ages are an average and a lot of children will gain one skill earlier than another. If you are concerned that your child is falling behind against the milestones, contact your GP or health visitor and take this information with you.

Birth to five timeline www.nhs.uk/tools/pages/birthtofive.aspx


The recovery processFor school aged children, always raise any concerns you have with teachers if you feel that your child is experiencing any difficulties, and make notes here.

More information about learning and developmental concerns can be found in ‘Your guide’ and is also available to download online.

After effects identified whilst your child is in hospital should have been discussed with you at discharge and/or at the follow-up appointment with the paediatrician and arrangements for continued care made. If your child has ongoing effects from their illness you can use this section of the journal to keep notes about your child’s treatment, care and progress. Keeping this type of diary can help you record all the highs and lows and keep track of any changes along the way. Using photographs and video can also be helpful.

We know that meningitis and septicaemia can turn your world upside down. This can be a time when you are also looking for extra help and support. Your GP can be a good starting point to help you access family support and social care if this has not already been arranged by the hospital. More information about support available can be found in section 6 and online.

Rememberyouknowyourchildbest;ifyouhaveconcernsatanytime,youcanspeaktoyourGPandtakeyourjournalwithyou.

The following notes pages are a good place to write down questions and concerns so that you don’t forget to ask anything at your appointments.

www.meningitis-trust.orgorwww.meningitis.org

The recovery process – my questions


The recovery process – my questions


Our family experienceHaving a child with meningitis or septicaemia can have a huge impact on family life; the recovery process can take time for everyone. It is often the parents who understandably take longer to adjust after such a traumatic experience, even if their child makes a full recovery.

It is important that all the family receives the care and support that meets their needs, including grandparents and extended family. Brothers and sisters, particularly young children, will need extra attention and understanding because they can experience anxiety and feelings of isolation. Parents can feel guilty about dividing their time and attention between their children.

Many families find it useful to write down their account of what has happened to their child when they were ill. It can be very therapeutic and in the future also help your child understand what has happened to them, particularly if they were sedated, or too young to remember. You may want to keep this just for your family, or you may want to put it in the journal for others to share. Some hospitals encourage families to take photographs; this is a very personal choice, but many families and children have found it useful to look back at the pictures some time later, and if children are living with after effects the photographs can help explain to them and others what they have been through.

Informationaboutthesupportavailabletoyouandyourfamilycanbefoundinsection6andonline.www.meningitis-trust.org/recovery or www.meningitis.org/recovery


Family experience – notes page






Continuedcare and appointments

If your child is referred to different hospital departments, or requires ongoing care, this section of the journal provides a place for you to record your appointments and insert any notes from the professionals you’re working with.

Appointments at a glance

You can download more of these pages online:www.meningitis-trust.org/recovery or www.meningitis.org/recovery

Contacts and appointments

Date: Time: Department:

Reasonforappointment:

Questionsandnotes:

Nameofhealthprofessional: Department: Contactdetails:





Questionsandnotes:






Questionsandnotes:



Information about after effects and aftercareIt will usually be apparent if your child has any serious or long-term after effects before leaving hospital. In such cases the paediatrician or other members of the team treating your child should discuss this with you before discharge and refer your child to other specialists. To keep information in this journal specific to your child you can go online to download and print off pages which are relevant to you and insert them here. This information can be useful when helping others understand your child’s condition.

Although the majority of children who survive meningitis and septicaemia recover without serious after effects, the list below shows some of the complications children can experience. This list is not designed to frighten you; many children will have none of these after effects, but others could have multiple complications. Many of these after effects are long-term; however they can often improve with treatment and support:

• Hearing loss and tinnitus • Balance problems • Hydrocephalus (water on the brain) • Sight loss • Epilepsy • Problems with movement and co-ordination (ranging from muscle weakness to paralysis) • Behavioural/emotional problems • Memory/concentration problems • Learning problems (ranging from mild difficulties to severe disability) • Speech and language problems

Some after effects only affect children who have been ill with septicaemia. These are:

• Skin and muscle damage • Amputations including loss of fingers, toes and limbs • Bone growth problems • Organ damage (such as kidney failure)

Serious and long-term after effects

Most people who go home from hospital without any obvious effects should not worry that new problems will develop after the illness, but some of the more subtle after effects of brain injury or damage to bones (in cases of septicaemia) may not be identifiable until years later (see page 21 in ‘Your guide’).

Keymessages

• If you notice that your child is experiencing difficulties at school, it is important to speak to their teacher and explain that your child has had meningitis, even if it was several years ago.

• Children who recover from septicaemia with scarring over their joints are at a higher risk of bone damage. If you notice any abnormality in your child’s growth, make an appointment to see your GP.

More information about the late development of after effects is available online.

Late development of after effects

www.meningitis-trust.org/recovery or www.meningitis.org/recovery

Further informationand support

Further information about various topics that may affect you, and how to get support can be found online. Topics include:

• In depth information about serious or long-term after effects and aftercare • Disability rights and benefits • Difficulty accessing NHS services • Education rights • Social work and community support • Useful and relevant research

Further information and support

www.meningitis-trust.org/recovery orwww.meningitis.org/recovery

facebook.com/TheMeningitisTrust@MeningitisTrusthttp://meningitis.healthunlocked.com

freephone helpline 0808 80 10 [email protected]

MeningitisTrust You may have many questions about meningitis or septicaemia and what to expect in the weeks and months ahead. We have a team of specialist community support workers across the UK who are here to help you. Our support is for life and we support the whole family. Because we exist, no-one has to face the impact of meningitis alone.

To find out how we can help, give us a call and we can talk everything through, or visit our website. Requesting a home visit can be a great starting point.

We provide:• A freephone helpline 0808 80 10 388, giving support by answering your questions. • Homevisits, offering you support in the comfort of your own home. • Financialsupportgrants, funding specialist aids, equipment, therapies, training, respite care and home adaptations etc. • Familydays, bringing families together to share their experiences of meningitis. • Aone-to-oneservice, putting you in touch with one of our many volunteers who have been through it too. • Counselling, helping you talk confidentially about your feelings and ways to manage the impact of the disease. • Creativetherapies, such as art, music, play or drama, helping children with emotional and behavioural concerns following meningitis.

MeningitisResearchFoundation We know that recovering from meningitis and septicaemia isn’t always easy. Facing the future can be harder still. With over 20 years experienceof supporting people in the UK we are here to help.

Membership – Join us free to stay up-to-date with our work and the latest developments. Take part in research or a research site visit and meet others with similar experiences at member days. In-depthdiseaseinformation – With the help of experts we can provide answers to the questions you need answered, enabling you to make more informed decisions about your care. Befriending – Support from someone who’s been there. We match people with trained befrienders who had a similar experience. Homevisits – We come to you to talk through questions and concerns. Disabilityrightsandbenefitsinformation – You might be entitled to a range of different financial and practical help you are not aware of. We can help. Ourvisionandmissionisaworldfreeofmeningitisandsepticaemia.Wehaveinvested millionsofpoundsintoresearchwhichfocusesonthedetection,preventionandtreatment ofthesediseases.

Our Information and Support Service: Freefone helpline 080 8800 [email protected]/meningitisresearch@M_R_Fwww.meningitis.org

Acknowledgements

Our special thanks to the representatives of the Royal Colleges, who provided their time, expertise and encouragement throughout:

DrAlistairThomson, Vice President (Education), Royal College of Paediatrics and Child Health DrJaniceAllister, Child Health Representative, Royal College of General PractitionersFionaSmith, Adviser in Children and Young People’s Nursing, Royal College of Nursing

We would also like to thank ProfSimonKroll, Paediatrics and Molecular Diseases, Imperial College London for his valuable feedback.

Finallywewishtothankallofourwonderfulfamilieswhoarealwayssogenerousandwillingtogivetheirtime,andsharetheirexperiences.

© Meningitis Trust and Meningitis Research Foundation June 2013. Next review January 2015

Meningitis Research Foundation Midland Way Thornbury Bristol BS35 2BSTel: 01454 281811 Freefone helpline: 080 8800 3344 Email: [email protected]

Registered charity number 1091105 (England & Wales), SC037586 (Scotland), CHY 12030 (Ireland) Company Limited by GuaranteeRegistered in England Number 4367866 Registered Office: Midland Way, Thornbury,Bristol, BS35 2BS

Meningitis Trust Fern House Bath Road Stroud Gloucestershire GL5 3TJTel: 01453 768000 Freephone helpline: 0808 80 10 388 Email: [email protected]

Registered charity number 803016 (England & Wales), SC037790 (Scotland) Company Limited by GuaranteeRegistered In England & Wales Number 2469130 Registered Office: Fern House, Bath Road, Stroud, Gloucestershire GL5 3TJ

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MyJournal– Life after childhood meningitis and septicaemia

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My Journal