Working withfamilies affectedby a disabilityor health conditionfrom pregnancy to pre-school

A SUPPORT PACK FOR HEALTH PROFESSIONALS

Working withfamilies affected by a disabilityor health conditionfrom pregnancy to pre-school

This resource is intended for all health professionals workingwith families of disabled children including ultrasonographers,obstetricians, midwives, neonatologists, neonatal nurses,paediatricians, health visitors, specialist nurses, therapists andcounsellors.

“Its aim is to highlight parents’ needs for accessible informationand appropriate support at significant times from pregnancy to pre-school.”

Examples of the events covered include:

� prenatal diagnosis � death in utero� a stay on a neonatal unit� referral to a genetics clinic

This pack has been informed by the knowledge, experience and views of health professionals, parents and professionalswithin the voluntary sector.

Contact a Family is a UK charity providing support and advice to families with disabled children and children with specifichealth conditions.

Contact a Family offers:

� Access to expert advisers via a dedicated national freephone helpline.

� Regularly reviewed, authored and dated information on over1000 rare disorders through the Contact a Family Directory ofSpecific Conditions, Rare Disorders and UK Family SupportGroups including health information and groups supportingfamilies. http://www.cafamily.org.uk/home.html

� A wealth of practical information on-line at Contact a Family’s award-winning website.

Contact a Family has offices in Scotland, Northern Ireland andWales and a network of regional offices and London projects.These offer a range of services including family support,workshops and local information. Contact a Family also has anetwork of local volunteer representatives who are all parents ofdisabled children. They offer information and support to families.Further details of what is available in your own area can befound on the Contact a Family website.

209-211 City Road, London EC1V 1JNHelpline: 0808 808 3555Website: www.cafamily.org.uk

Febuary 2006

http://www.cafamily.org.uk/HealthSupportPack.pdf

Contact a Family would like tothank all those who havecontributed to this resource.

Written by Lucy Arnold MSc,Information Officer(Rare & Genetic Disorders) and other members of Contact a Family staff.

Contact a Family would like to thank the Department of Healthand Department for Educationand Skills for assistance infunding this project.

contents

1 PRENATAL DIAGNOSIS

2 OPTIONS FOLLOWING A PRENATAL DIAGNOSIS

3 DEATH IN UTERO

4 INFORMATION SHARING IN NEONATAL UNITS

5 CARE AND SUPPORT AT HOME – the role of the health visitor

6 HOSPITAL CARE – the role of the health visitor

7 REFERRAL TO A GENETICS CLINIC

8 SUPPORT FOR FATHERS, SIBLINGS, GRANDPARENTS

9 GOOD PRACTICE IN SHARING NEWS

10 CONTACT A FAMILY AND OTHER SOURCES OF INFORMATION

11 EARLY SUPPORT – Supporting co-ordinated services (only applicable in England)

Having a child with a disability or serious healthcondition has an impact well beyond diagnosis,prognosis and subsequent health treatment. Thereare wider social implications for the family and child.

Sharing news with parents about a child is achallenging task requiring skill and sensitivity. This islikely to be one of the most significant pieces ofinformation parents ever receive. Their experience atthis time is likely to have a huge impact upon themand their child’s future.

This multidisciplinary resource is written primarily forhealth professionals working with children includingultrasonographers, obstetricians, midwives,neonatologists, neonatal nurses, paediatricians,health visitors, specialist nurses, therapists andcounsellors. Its aim is to highlight parents’ needs foraccessible information and appropriate support whenreceiving news about a disability or health condition,from pregnancy to pre-school years. All information isbased on consultation with parents, voluntary sectororganisations and health professionals and on currentguidelines for good practice.

Language is used, particularly medical terms, withparents and potential parents in mind. The word‘parents’ is used throughout for convenience. Werecognise that there are many women without apartner, or whose partner is not their child’s fatherand, occasionally, some men without a partner. Wealso appreciate that some primary carers will notconsider themselves parents.

Contact a Family provides support, advice andinformation for families with disabled children. In April 2004 Contact a Family embarked upon a three year project with the Royal College ofPaediatrics and Child Health. Working directly withpaediatricians and other health professionals, theproject aims to improve the information given toparents at the time of diagnosis and on an ongoingbasis and to ensure that families are put in touch withContact a Family and other support organisations. Wehope this pack will be a useful resource within thiscontext.

A Welsh version of this support pack is available – seehttp://www.cafamily.org.uk/wales/index.html

Contact a Family has a range of posters, factsheetsand helpline cards for use within your clinic or ward,including information on tape, in Welsh and in otherlanguages. Our freephone helpline offers support toparents and information to professionals. Please docall us if you need any information.

Helpline: 0808 808 3555Monday to Friday 10am-4pm, Mon 5.30-7.30pm

Textphone: 0808 808 3556

IntroductionEvery day over 95 women are told there is a risk that their unborn baby willhave a serious abnormality. Every day over 75 children are born or diagnosedwith a disability or health condition. In these situations, parents need ongoinginformation and support, often before a diagnosis is reached.

Although great care has been taken in the compilation and preparation of this work to ensure accuracy,Contact a Family cannot accept responsibility for any errors or omissions. Any links to external websites havebeen carefully selected but are provided without any endorsement of the content of those sites.

Prenatal diagnosis

This information sheet is intended for all healthprofessionals meeting parents at or around thetime of a prenatal diagnosis.

The moment an anomaly is identifiedor suspected on a scan

For most parents, a detailed scan is a positive experiencethat offers reassurance as well as the chance for aphotograph of their baby. Most parents come for a routinescan assuming that everything is ‘normal’ and are shockedby, and unprepared for, news of an anomaly or diagnosis.Only a few parents coming for a scan are prepared for the‘worst’, though perhaps hoping for the ‘best’. Parentsusually realise when something on a scan is causingconcern. Changes in the health professional’s behaviourand body language, such as leaving the room without anexplanation, or an unexplained silence, may give clues.

Key points

l Find out what pre-scan information and support yourunit offers. Do parents give informed consent? Doparents know the purpose and limitations of theprocedure? Do parents know what communication toexpect during the scan? Explaining this information atthe outset may allay some parents’ anxiety, particularlyfrom silences.

l Inform parents as and when factors, such as thepositioning of the unborn, make scanning difficult.

l Acknowledge the limitations of your role. If you needto get a second opinion, saying something like, ‘I’d liketo get a colleague to have a closer look at …’. helpsparents feel included.

l Recognise the impact of information obtained from ascan. A sentence such as ‘I understand this must havecome as a great shock’ may help parents feel cared for.

l Make the place ‘private’ and more appropriate – closethe door and have a proper conversation with theparents.

l Parents may respond differently to the situation. Tailorinformation and support to respective need.

l Offer contact details of a lead health professionalwhom parents can contact during the pregnancyand/or the morning after the scan. Refer their case tothe lead health professional.

l Document all relevant information in the hand-heldnotes, care plan and hospital notes.

l Establish clear guidelines on the communicationprocess from consultant through to clerical staff.

l Establish efficient communication between local andspecialist units.

l Establish efficient communication between local staff,the hospital and community staff.

Referral for confirmation and/or further information

The amount of information parents initially receive mayvary. It can range from being told there is a problem, withno further detail, through to complete, detailed information.If ultrasound findings cannot be clearly or easily confirmed,parents may feel anxious; subsequent findings may leavethem feeling they are on an emotional ‘roller coaster’.

Key points

l Ask parents to give the name of their lead healthprofessional; also ask whom they see as their mainpoint of contact. Pass all information on to thisprofessional.

l Provide full and accurate information about invasivetests for chromosome analysis.

Sharing news with parents

Although parents are always distressed to find out thatsomething may be ‘wrong’ with their unborn baby,emotional responses may vary considerably. It isimportant to recognise that the way parents are giveninformation can have a long-lasting positive or negativeimpact on their decisions and experiences. When hearing news, parents often hear messagesdifferent from those intended.

– Bear in mind that, for some parents, the clinical picturecan sound like a list of ‘what the unborn baby won’t beable to do’ without referring to ‘what the unborn babywill be able to do’. Parents may be minimising ormaximising what they are hearing. Their perception of‘disability’ and severity may also be genuinely differentfrom yours.

– For some parents, it can seem as though the unbornbaby is being described as an ‘interesting medicalcase’, particularly if they are aware of a number ofobservers in the room.

INFORMATION SHEET 1

– Parents who are referred to a number of professionals,including obstetricians, neonatologists, paediatricsurgeons and geneticists can feel they are givendiffering accounts of prognosis.

Key points

l When available, communicate full and accurateinformation in understandable, non-medical terms. Be aware that medical terms can convey to parentsthat this is a purely medical experience rather thanalso a very human and emotional one.

l When full and accurate information is not available,explain any uncertainties in the diagnosis andprognosis. Explain that it is often not possible topredict likely long-term outcome with any degree of certainty.

l Check parents’ understanding of the information given.l Recognise that parents may have different needs for

information and that they are likely to vary in theiremotional responses.

l Offer time for reflection and an opportunity to askquestions, however ‘trivial’ these may seem.

l Identify whether parents want to know the sex beforedescribing the unborn as ‘he’ or ‘she’.

l Ask if a family member who is not present would likean appointment or telephone call for an explanation.

l Ensure that cultural differences are fully supported –offer interpreters or health advocates where necessary,as well as relevant translated literature, where possible.Further information is available from Language Line(see Useful organisations).

l Offer parents an agreed time alone; give them thespace they might appreciate.

l Offer a referral to the relevant clinician, specialist nurse,midwife or health visitor as appropriate. Documentyour discussion in the notes.

l Offer assistance in formulating relevant questions forother health professionals.

l Find out if and when parents would like up-to-datewritten information on the condition, support groupand local services. If requested, document theresources given.

Health professionals’ needsl Knowledge of the unit’s policy on training and the

professional’s own training needs, particularly aroundcommunication skills, sharing news and disabilityequality.

l Knowledge of the communication policy and any localguidelines on talking to parents within the localhospital trust.

l Knowledge of the formal and informal supportmechanisms in place and an opportunity to ask forsupport if needed.

Although great care has been taken in the compilation and preparation of this work to ensure accuracy, Contact a Family cannot accept responsibility for any errors oromissions. Any links to external websites have been carefully selected but are provided without any endorsement of the content of those sites.February 06

INFORMATION SHEET 1

Useful organisations

ARC (Antenatal Results and Choices)73–75 Charlotte Street, London W1T 4PN Helpline: 020 7631 0285 (10am–5.30pm, Mon–Fri) Tel/Fax: 020 7631 0280e-mail: [email protected] Web: www.arc-uk.org

BDF Newlife (Birth Defects Foundation)BDF Centre, Hemlock Business Park, Hemlock Way, Cannock,Staffordshire WS11 7GFHelpline: 08700 707020 (9.30am–5.00pm, Mon–Fri) Tel: 01543 468888 Fax: 01543 505989e-mail: [email protected] Web: www.bdfcharity.co.uk

Contact a Family209–211 City Road, London EC1V 1JN Freephone Helpline: 0808 808 3555 (10am–4pm Mon-Fri, &Mon 5.30pm-7.30pm) Fax: 020 7608 8701 Textphone: 0808 808 3556e-mail: [email protected] Web: www.cafamily.org.uk

Genetic Interest Group (GIG)Unit 4D, Leroy House, 436 Essex Road, London N1 3QPTel: 020 7704 3141 Fax: 020 7359 1447e-mail: [email protected] Web: www.gig.org.uk

Language Line Limited11–21 Northdown Street, London N1 9BNTel: 020 7520 1430 Fax: 020 7520 1450 e-mail: [email protected]: www.languageline.co.uk

Useful resources

Abramsky L, Chapple J (editors) (2003) Prenatal Diagnosis –The Human Side, 2nd edn. Nelson Thornes.

Boyle RJ, de Crespigny L, Savulescu J (2003) An ethical approach to giving couples information about their fetus. Human Reproduction 18 (11): 2253–6.

Kaplan D (1994) Prenatal Screening & Diagnosis: The Impact onPersons with Disabilities. In KH Rothenberg and EJ Thomson,editors. Women & Prenatal Testing: Facing the Challenges ofGenetic Technology. Columbus: Ohio State University Press.

Royal College of Obstetricians & Gynaecologists and the RoyalCollege of Paediatrics & Child Health (1997) Fetal AbnormalitiesGuidelines for Screening, Diagnosis and Management. Report ofthe Joint Working Party of the Royal of Obstetricians &Gynaecologists and the Royal College of Paediatrics & ChildHealth. London: RCOG & RCPCH.

Statham H, Solomou W, Green JM (2001) When a baby has anabnormality (volume 1): a study of parents’ experiences. Centrefor Family Research, University of Cambridge, Cambridge.

The Contact a Family Directory, Specific Conditions, RareDisorders and UK Family Support Groups, annual edn. Contact a Family.

Options following a prenatal diagnosisThis information sheet is intended for all health professionals meeting parents after aprenatal diagnosis.

The decision-making processfollowing a prenatal diagnosis

Confirmation of a diagnosis or an anomaly can leadparents to one of the most difficult decisions they haveever faced – whether or not to continue with theirpregnancy. Factors influencing decision-making mayinclude the seriousness of the condition, the futurepossibility of the unborn child leading an independentlife, the impact of the condition on the rest of the family,and the parents’ attitudes towards disability andtermination. Other factors may include the unborn’schances of survival and the predicted quality of life aftersurgery. Moral, religious and cultural beliefs may alsoinform parents’ decision-making. Parents may find itparticularly difficult to make a decision where prognosisand severity are uncertain, or if new findings becomeapparent later in the pregnancy.

Key points

l Offer as full and accurate information as you can aboutall options, including services after birth.

l Check parents understand the options. l Be aware that different parents want varying amounts

of information and in different formats.l Explain whether or not there is a time pressure. Be clear

about what the time pressure is and why it exists. l Ensure that cultural differences are fully supported –

offer interpreters or health advocates where necessary,as well as translated literature, where possible. Furtherinformation is available from Language Line (seeUseful organisations).

l Give parents time to reflect upon and ask questions. l Many parents ask ‘What would you do in my place?’

Parents can feel abandoned and unsupported if yourreply (to the effect of ‘this is not my choice’) isphrased in an unqualified way. Recognise your ownethical and moral position and support the parents inwhatever choice they make.

l Give parents time to make a decision and recognisehow difficult this is under time pressure.

l Make sure that parents are offered support, respectand information in a way that will allow them to livewith their decision for the rest of their lives.

l Offer a referral to other professionals including a

neonatologist, paediatric surgeon and geneticist, asappropriate (see Information sharing on neonatalunits Information Sheet 4).

l Offer assistance formulating relevant questions forrespective health professionals.

l Ask if, and when, parents would like information onvoluntary organisations, for example, ARC (AntenatalResults & Choices) or Contact a Family (see Usefulorganisations).

Termination of pregnancy

Whatever the reason for the termination, and whateverstage of pregnancy this takes place, parents needinformation about what is involved. Some parents willrequest more detailed information than others – it isimportant, therefore, to sensitively identify and meetrespective need.

Key points

l Use plain English at all times – jargon may confuseparents. Medical terms can also convey to parents thatthis is a purely medical experience rather than also ahuman and emotional one.

l Offer information on how and where the terminationwill be carried out.

l Offer information on whether or not it will be possibleto see the baby’s body.

l Give honest and thoughtful responses to questionssuch as, ‘Will the baby feel any pain?’, ‘What will thebaby look like?’, ‘Will I be able to say goodbye?’

l Feel prepared to discuss the short and long-termpsychological effects of terminating a pregnancy.

l Give parents an opportunity to discuss their feelingswith a support nurse or midwife, both before and afterthe termination.

l Refer for counselling before and after the termination, if appropriate. Offer details of in-house bereavementsupport, hospital chaplain, GP counsellor, andvoluntary sector organisations. Ensure contact detailsare documented somewhere other thanmaternity/hospital records.

l Ask if and when parents would like to be offered theARC Handbook (see Useful resources).

l Offer information on the post-mortem and what willhappen to the baby’s body. Discuss the importance ofobtaining a correct diagnosis for estimating the risk tofurther pregnancies. Sensitively let parents know thatthe most reliable basis for a genetic diagnosis is a post-

INFORMATION SHEET 2

mortem. However, if parents do not want a post-mortem, detailed photographs, X-rays or tissuesamples for chromosome analysis might also beuseful. Inform parents that a post-mortem may notprovide a diagnosis.

l Establish efficient communication between local staff,hospital and community staff.

Continuing with the pregnancy

For many parents who continue with their pregnancy, it can seem like the main focus is the pregnancy.

Key points

l Recognise parents’ feelings. They may be ambivalent– looking forward to their baby’s birth but alsoanxious and concerned. Parents may carry a sense ofguilt and failure. They may also feel responsible forletting the baby down in some way. Be aware thatthese feelings sometimes translate as anger towardshealth professionals.

l Feel prepared to discuss the short and long-termpsychological effects of continuing with a pregnancy.

l Encourage parents to meet a (named) midwife in thedelivery suite and make a birth plan.

l Encourage parents to visit the neonatal unit and discusswhere the birth will take place (see Information sharingon neonatal units Information Sheet 4).

l Offer help in formulating questions for relevant health professionals.

l Ask if and when parents would like relevant writteninformation on the condition, details of condition-specific support groups and ARC publication (seeUseful resources).

l Offer details of professionals with whom parents candiscuss their feelings after birth including midwives,health visitors, in-house bereavement counsellors,genetic counsellors, hospital chaplains and voluntarysector organisations (see Useful organisations).

l Offer information on subsequent short and long-termtreatment for the baby and services from themultidisciplinary team available.

l If it is known that the baby will die at or shortly afterbirth, sensitively offer parents information about apost-mortem. Offer the opportunity to discuss theexamination with a professional best qualified torespond to their questions.

l Offer details of the lead health professional whomparents can contact during the pregnancy.

l Establish efficient communication between local staff,the hospital and community staff.

Health professionals’ needsl Knowledge of the unit’s policy on training and the

professional’s own training needs, particularlyaround communication skills, sharing news anddisability equality.

l Knowledge of the communication policy and anylocal guidelines on talking to parents within the localhospital trust.

l Knowledge of the formal and informal supportmechanisms in place and an opportunity to ask forsupport if needed.

Although great care has been taken in the compilation and preparation of this work to ensure accuracy, Contact a Family cannot accept responsibility for any errors oromissions. Any links to external websites have been carefully selected but are provided without any endorsement of the content of those sites. February 06

INFORMATION SHEET 2


ARC (Antenatal Results and Choices)73–75 Charlotte Street, London W1T 4PN Helpline: 020 7631 0285 (10am–5.30pm, Mon–Fri,Mon 5.30-7.30pm) Tel/Fax: 020 7631 0280 e-mail: [email protected] Web: www.arc-uk.org

Contact a Family209–211 City Road, London EC1V 1JN Freephone Helpline: 0808 808 3555 (10am–4pm, Mon–Fri,Mon 5.30-7.30pm) Fax: 020 7608 8701 Textphone: 0808 808 3556e-mail: [email protected] Web: www.cafamily.org.uk


Useful resources

ARC (Antenatal Results and Choices) (1999) Parents Handbook: a handbook to be given to parents when their unborn baby isdiagnosed with an abnormality. www.arc-uk.org

ARC (Antenatal Results and Choices) (2003) Supporting YouThroughout Your Pregnancy: a handbook for parents after aprenatal diagnosis. www.arc-uk.org/cap.htm

Royal College of Obstetricians & Gynaecologists and the RoyalCollege of Paediatrics & Child Health (1997). Fetal AbnormalitiesGuidelines for Screening, Diagnosis and Management. Report ofthe Joint Working Party of the Royal of Obstetricians &Gynaecologists and the Royal College of Paediatrics & ChildHealth. London: RCOG & RCPCH.

Statham H, Solomou W, Green JM (2001) When a baby has anabnormality (volume 1): A study of parents’ experiences. Centrefor Family Research, University of Cambridge, Cambridge.

Statham H (2002) Prenatal diagnosis of fetal abnormality: thedecision to terminate the pregnancy and the psychologicalconsequences. Fetal and Maternal Medicine Review 13: 213–247.


Death in utero

This information sheet is intended for all healthprofessionals meeting parents at the time of an inutero death.

The moment an in utero death is confirmed

A strong bond may already exist between parents and theunborn baby. As such, parents may be acutely fearful ofthe possibility that there is cause for concern.

Key points

l Ensure that parents are not left alone for long periodsor made to wait in public places within theclinic/hospital.

l In the case of only one parent being present, ensurethat she is given the option of contacting her partner, a relative or friend. Recognise, however, that somewomen actually prefer to be alone.

l At the time of death, many parents value a personalexpression of sympathy from their health professional.

l Offer parents respect, privacy and emotional space at this time.

l Be aware that the father’s response may differconsiderably from that of the mother.

l Offer parents the SANDS (Stillbirth and Neonatal DeathSociety) helpline contact details (see Useful organisations).

l Inform the GP and community midwife.

Preparation for induction and labour

The prospect of giving birth to a dead baby can be veryfrightening. Parents may have assumed they would have aCaesarean section and may need time to come to termswith the idea of a vaginal birth. The experience of labour isa very significant one. For many parents, birth representsthe breaking of the physical bond – this may be whenthey fully realise their baby is dead. It is also one of the lasttimes parents are able to be with their baby.

Key points

l Communicate full and accurate information inunderstandable, non-medical terms about forthcomingevents, decisions and procedures. Medical terms mayconvey to parents that this is a purely medical experiencerather than also a human and emotional one.

l When full and accurate information is not possible,explain any uncertainty.

l Offer to repeat information. Remember, grief andshock can affect the parents’ ability to retaininformation and make sense of what is happening.

l Recognise that the father’s needs for information,support and involvement may differ from those of the mother.


l Allow parents adequate time to consider the optionsavailable, acknowledging that distress can affect theirability to make a decision.

l Where possible, offer parents a choice about when theinduction can take place. Recognise that some parentswill want to deliver as soon as possible, whilst otherswill need more time.

l If parents are going home before induction, offercontact details of a lead health professional whomthey may contact. Also offer the SANDS helplinenumber (see Useful organisations).

l Welcome and encourage questions, particularlyquestions that parents need to ask but find difficult to express.

l Parents may be anxious about what their baby will looklike. Explain this gently.

l Offer support as you prepare parents for the physicalappearance of the baby, especially for a twin pregnancywhere one has died before the birth of the survivor.

After delivery

The time that parents spend with their baby after he orshe is born is very precious. It forms the basis of treasuredmemories for the future. It is important for parents tospend as much time as they need with their baby andchoose what they want to do at this time.

Key points

l Offer parents a private room (if this available) andphysical distance from live babies.

l Ensure parents are aware of their choices, for example,holding their baby, washing and dressing the baby,taking photographs. Be aware that parents may chooseto bring their own clothes or toys for the baby.

l If parents want to take photographs, gently informthem that the photographs should be good quality –Polaroid photographs can fade with time.

INFORMATION SHEET 3

l Recognise the importance of physical reminders of thebaby. Often parents value a memory card to collecthand and footprints.

l Welcome other family members.l Show sensitivity to differences in religious and cultural

beliefs and rituals.l If appropriate, offer support from a member within the

team, member of the hospital chaplaincy team or fromparents’ own spiritual leader.

l Discuss the importance of a correct diagnosis forestimating the risk to further pregnancies. Sensitivelycommunicate that the most reliable basis for a geneticdiagnosis is a post-mortem and that, if the parents donot want to have a post-mortem, tissue samples forchromosome analysis may be useful. Detailedphotographs or X-rays might be useful, although thesemay be more limited in their results. Sensitively explaindifferences between clinical and personal photographs.

l Offer parents the opportunity to discuss a post-mortem with the professional best qualified to respond to relevant questions.

l Mark notes with a sticker to indicate a perinatal loss.

On dischargeLeaving hospital without a baby is one of the lowestpoints for many parents. They may be unaware of localsupport groups or professionals with whom they candiscuss their feelings.

Key points

l Ask if and when parents would like contact details oforganisations and professionals trained in bereavementsupport or counselling. These might include in-housebereavement counsellors, hospital chaplains, GPcounsellors, registered counselling agencies, localchurch groups and appropriate voluntary sectororganisations (see Useful organisations).

l Establish an efficient communication system betweenspecialist, local and community staff. The communitymidwife may provide immediate support whencompleting a 10 day postnatal check and can offershort-term support. Health visitors may also supportparents in the grieving process and around theanniversary of the baby’s death.

l Give full information about post-natal bleeding andbreast milk production and the name of a key healthprofessional who can be contacted.

l Inform the GP, health visitor, community midwife and other professionals involved in care, therebypreventing dissemination of inappropriate follow-up correspondence.

l Offer information about funeral options andregistering a stillbirth. This is available from SANDS(see Useful organisations).

Health professionals’ needs

The death of a baby in utero is a sad event for healthprofessionals and may cause emotional strain within the team.


l Knowledge of the unit’s policy on training and theprofessional’s own training needs, particularly aroundcommunication skills and sharing news.

l Knowledge of their own formal and informal supportmechanisms and an opportunity to ask for support ifthey need it.


INFORMATION SHEET 3


Child Death HelplineFreephone Helpline: 0800 282986(10am–1pm Mon, Fri 1pm–4pm Wed 7pm–10pm Mon, Sun)Web: www.childdeathhelpline.org.uk


SANDS (Stillbirth and Neonatal Death Society)28 Portland Place, London W1B 1LYHelpline: 020 7436 5881 (10am–4pm, Mon–Fri)Tel: 020 7436 7940 Fax: 020 7436 3715e-mail: [email protected] Web: www.uk-sands.org

Useful resources

Kohner N (1995) Pregnancy Loss and the Death of a Baby:Guidelines for Professionals. SANDS.

Kohner N, Henley A (2001) When a Baby Dies, The experienceof late miscarriage, stillbirth and neonatal death, 2nd edn.Routledge.

Moulder C (1998) Understanding Pregnancy Loss: Perspectivesand Issues in Care. Macmillan.


Thomas J (1993) Death at Birth. A two-part training video forprofessionals. The Child Bereavement Trust, High Wycombe.www.childbereavement.org.uk

Information sharing in neonatal unitsThis information sheet is intended for all healthprofessionals meeting parents on a neonatal unit.

An antenatal referral

When an anomaly has been identified on a scan, parentsare offered an opportunity to discuss the implications witha number of health professionals (see Options following aprenatal diagnosis Information Sheet 2). Parents may bestrongly affected by the different perspectives of prognosisoffered by obstetricians, neonatologists and paediatricsurgeons, however slight these differences might be.

Key points

l If only one parent is present when you are providinginformation, ask if she would like to be accompaniedby a partner, family member or friend at the hospital.

l Recognise the impact of receiving this information. A phrase such as, ‘I appreciate this must have comeas a shock to you’ can make all the difference.

l Check parents’ knowledge and understanding ofdiagnosis and prognosis.

l Communicate information as fully and accurately aspossible in understandable, non-medical terms. Aswell as potentially confusing parents, medical termsmay convey the idea that this is a purely medicalexperience rather than also a human one.

l If full and accurate information about diagnosis andprognosis is not possible, explain this.

l Ensure parents are aware that sometimes the outcomeis different from expected. It may be appropriate to saysomething like, ‘It is difficult to predict the outcomeuntil the baby is born but it is likely to be…’

l Give parents an opportunity to ask questions anddiscuss the results, either at the time, or at a laterappointment.

l If the baby is likely to require neonatal care, offerparents an opportunity to visit the neonatal unit priorto delivery.

l Offer parents sufficient time to reflect and makedecisions. Make sure that they have time alone todiscuss their options.

l Ask if and when parents would like up-to-date writteninformation on the condition and details of relevantsupport groups.

l Ask if and when parents would like BLISS, thepremature baby charity, freephone helpline contactdetails (see Useful organisations) and, where possible,BLISS Parent Information Guide (see Useful resources).

l Offer details of a lead health professional whomparents can contact during the pregnancy. Refer theircase to this person.

l Document the agreed plan of care and make thisaccessible to all healthcare professionals including theGP and primary care team.

l Establish an efficient system of communicationbetween the Fetal Medicine Unit and the NeonatalUnit; by arranging weekly communication meetings to ensure that important care decisions are discussed,for example.

After birth

Health professionals are in a key position to facilitate therelationship between parents and the newborn baby.

Key points

l Encourage parents to have physical contact with their baby.

l Be positive. Comments such as ‘Isn’t she beautiful…’or ‘How well you hold her…’ can facilitate parents’relationships with their baby.

l Welcome visits from family members.l Encourage parents to be present at the initial

newborn examination. l Summarise complex discussions in the notes and

share with parents. l Ask if and when parents would like up-to-date medical

information on the baby’s condition and details ofsupport groups, where appropriate.

l Offer information on parent group meetings, if theseare arranged on the unit.

l Liaise with the health visitor or specialist nurse andinvite them to the unit prior to discharge.

l Establish efficient communication with themultidisciplinary team and offer written contact detailsof relevant health professionals.

Going homel Allow parents time to discuss any anxieties and

concerns about taking the baby home, including theimpact on the wider family.

l Offer information on the range of health professionalsavailable to assist parents at home.

l Establish efficient communication between thehospital and community health professionals.

INFORMATION SHEET 4

Useful organisationsACT (Association for Children with life-threatening orterminal conditions and their families)Orchard House, Orchard Lane, Bristol BS1 5DTHelpline: 0845 108 2201 Fax: 0117 930 4707e-mail: [email protected]: www.act.orguk

BLISS, the premature baby charity68 South Lambeth Road, London SW8 1RLFreephone Helpline: 0500 618 140 (10am–5pm, Mon–Fri)Tel: 020 7820 9471 Fax: 020 7820 9567e-mail: [email protected] Web: www.bliss.org.uk

Contact a Family209–211 City Road, London EC1V 1JN Freephone Helpline: 0808 808 3555 (10am–4pm, Mon–Fri, & Mon5.30-7.30pm) Fax: 020 7608 8701 Textphone: 0808 808 3556e-mail: [email protected] Web: www.cafamily.org.uk

Language Line Limited11–21 Northdown Street, London N1 9BNTel: 020 7520 1430 Fax: 020 7520 1450 e-mail: [email protected] Web: www.languageline.co.uk

SANDS (Stillbirth and Neonatal Death Society)28 Portland Place, London W1B 1LYHelpline: 020 7436 5881 (10am–4pm, Mon–Fri) Tel: 020 7436 7940 Fax: 020 7436 3715e-mail: [email protected] Web: www.uk-sands.org

Useful resourcesBLISS Parent Information Guide – Information and support for thefamilies of sick and premature babies, 2nd edn (2004). BLISS – thepremature baby charity.

McHaffie HE (2001) Crucial Decisions at the Beginning of Life:Parents’ experiences of treatment withdrawal from infants. RadcliffeMedical Press.

Statham H, Solomou W, Green JM (2001) When a baby hasan abnormality (volume 1): a study of parents’ experiences. Centrefor Family Research, University of Cambridge, Cambridge.

The Contact a Family Directory, Specific Conditions, Rare Disorders and UK Family Support Groups, annual edn. Contact a Family.

Wyatt JS (1999) Neonatal care: withholding or withdrawal oftreatment in the newborn infant. Baillieres Best Practice andResearch Clinical Obstetrics and Gynaecology 13 (4): 503–11.

Early support Information for parents – see sheet 11


INFORMATION SHEET 4

Sharing news about a critically ill newborn baby

Although parents may want detailed information aboutthe future, it is often not possible to predict long-termoutcomes with any certainty. Health professionals need tobe prepared to admit these uncertainties to parents.

Key points

l Before seeing parents, discuss the baby withcolleagues and try to reach a consensus on thebaby’s care plan. A consensus view will be helpful to parents.

l Before seeing parents read the maternal and fetal notes.

l Offer detailed information in understandable, non-medical language including:w diagnosis and explanation of causew prognosis and degrees of certaintyw treatment options where available.

l Refer to the baby by name and demonstrate by youractions and words that you recognise and value thebaby as a unique and precious individual.

l Do not be afraid to express your emotions whendiscussing tragic news with parents. In thesecircumstances, many parents find it helpful whenhealth professionals show their human involvement.

l Involve parents in making decisions, encourage themto carry out containment holding, kangaroo care,changing nappies, feeding or tube feeding their baby.

l Encourage parents to be involved in their baby’s careduring his or her time on the neonatal unit.

l Encourage parents to involve siblings.l Talk to the parents frequently and ensure all

information is communicated in an accessible wayshowing sensitivity to the diversity of parents’circumstances and personal experiences.


l Listen to parents and answer their respective questionsas fully and honestly as possible.

l Acknowledge that fathers may have differentinformation and support needs from mothers and may respond differently to the situation.

l Do not destroy all hope. Even though the prognosis is very poor, reassure parents that support andassistance will continue to be available for themwhatever happens.

l Document each discussion and any decisions madein the notes.

Health professionals’ needsl Knowledge of the unit’s policy on training and

individual training needs around communication skills,sharing the news, disability and counselling.


l Knowledge of the formal and informal supportmechanisms with an opportunity to ask for help if needed.

Care and support at home– the role of the health visitorIntroduction

Parents may be taking their baby home from a maternitydepartment or neonatal unit with the knowledge thatfurther investigations and possibly ongoing medicaltreatment will be required. Some babies will requireconsiderable ongoing health care. In addition to their otherresponsibilities, it is the parents who will be providingmost of this health care at home. Parents are often still inshock, feeling isolated, guilty and anxious at this time.

The health visitor may, or may not, be meeting theparents for the first time; and may, or may not, havepreviously worked with a child with a similar disability orhealth condition. For the parents, meeting the healthvisitor prior to discharge (arranged by the liaison healthvisiting team) eases the transition from hospital care tocare at home. The offer of regular contact and support willusually be much appreciated.

Key points

l Interact with the child by using his or her name, ratherthan focusing on the disability.

l Take time to listen to each member of the family,acknowledging the complexity of their feelings. Helpindividuals to accept their feelings over time.

l Be honest about your own knowledge limitations. Seekinformation from key health and social care colleagues,as well as conducting your own literature searches.

l Ensure that cultural differences are fully supported –offer interpreters where necessary, as well as translatedliterature, if possible. Further information is availablefrom Language Line (see Useful organisations).

l Be familiar with and follow the recent DfES & DHguidelines for professionals working with disabledchildren (see sheet 11).

Provision of information

Parents of children with a disability or health conditionenter a bewildering maze of multiple services,assessments and appointments. Most parents have noexperience of the services available to them, and areunaware of their rights. Parents are very appreciative,therefore, when a health visitor signposts them to keyorganisations. Contact a Family is a good starting pointfor obtaining such information.

The health visitor also plays a key role in identifyingand referring families to relevant professionals. Referralsmay be to children’s disability teams in social services,

community children's nurses (CCN), specialist paediatricnurses with responsibility for children with specificconditions, learning disability nurses, hospital playspecialists (some of whom are attached to CCN teams),hospital based paediatric staff, paediatric pharmacists,nutritionists, paediatric physiotherapists and paediatricoccupational therapists.

Key points

l Explain your role and how this relates to the roles ofother professionals. With parent's permission, find outwhat information has already been shared. Keep thefamily updated of your actions.

l Check parents’ understanding of their child’sdiagnosis and health.

l Explain the usefulness of the parent held recordssuch as the Early Support Family File ifappropriate (see sheet 11).

l Encourage parents to keep all correspondence ontheir child in date order and in the same place,preferably in a loose leaf file with plastic pockets.

l Ensure that parents know the name of theircommunity or consultant paediatrician who takes thelead for disabled children. Copy this professional intoall relevant correspondence.

l Establish good relations with relevant professionalsand organisations.

l Ask if and when parents would like information onlocal and national support groups (see Usefulorganisations).

l Offer details of local social services children’sdisability teams, explain what these offer.

l Use other resources such as materials from EarlySupport, if relevant (see sheet 11).

Provision of support

Without integrated service provision, parents can feel as though each professional is addressing only oneaspect of their child’s needs. It is helpful therefore,when professionals work together to meet the child’sand family’s needs. Parents value one professionaltaking on the role of a key-worker, to act as the mainpoint of contact and co-ordinate services. (see CCNUK -sheet 11). Early Support material can also help thisprocess. (see Early Support Family File - sheet 11)

INFORMATION SHEET 5

Key points

l Identify whether or not parents would like oneprofessional to act as a key worker and if so discussthis with relevant health professionals.

l Offer assistance in identifying available servicesincluding breaks from caring. Discuss the mostappropriate care.

l Signpost parents to local and national voluntaryorganisations for financial entitlement, for exampleContact a Family (see Useful organisations).

l Offer information on the Family Fund which providesgrants for parents with a severely disabled or severelyill child. It can provide grants for washing machines,driving lessons, holidays and anything else related tothe care of the child (see Useful resources).

Equipment, clinical supplies and medication

The provision and maintenance of equipment is oftenfraught with difficulties and delays. Disputes may ariseabout responsibility for funding, maintenance and thelocations equipment can be used.

Key points

l Be an advocate for parents obtaining appropriateequipment and supplies, including continenceservices. Link with other professionals as appropriate.

l With parents’ permission, contact the local pharmacyregarding holding stocks of the child's medication orclinical supplies.

Child care, play group, leisure facilities and school

Parents often find it difficult to identify appropriate childcare, play groups and leisure facilities. The processesrelating to schooling may be confusing.

Key points

l Inform parents about appropriate local child care, playgroups and leisure facilities.

l Offer parents contact details of the local ParentPartnership Officer who provides information andsupport on education choices.

l Liaise with the school nurse prior to the childcommencing school.

Episodes of acute illness ordeterioration in child's condition

Periods of acute illness and hospital care are commonexperiences for children with a serious health disorderor disability.

Key points

l Prepare parents for the possibility of periods of acuteillness and contact with hospital services includingadmissions (see Hospital care – the role of thehealth visitor Information Sheet 6).

l Establish whether parents are aware of the signs andsymptoms which need to be brought to the attentionof health professionals.

l Offer to contact the GP or community children’snursing team directly (as appropriate) in order toensure the child is seen quickly, which may prevent a hospital admission.


INFORMATION SHEET 5


ACT (Association for Children with Life-Threatening orTerminal Conditions and their Families) Orchard House, Orchard Lane, Bristol BS1 5DTHelpline: 0845 108 2201 (9am–4.30pm Mon, Fri) Fax: 0117 930 4707e-mail: [email protected] Web: www.act.org.uk

Contact a Family209–211 City Road, London EC1V 1JN Freephone Helpline: 0808 808 3555 (10am–4pm, Mon–Fri, &Mon 5.30-7.30pm) Fax: 020 7608 8701 Textphone: 0808 808 3556e-mail: [email protected] Web: www.cafamily.org.uk

Family Fund Unit 4 Alpha Court, Monks Cross Drive, York YO32 9WN Tel: 0845 130 45 42 Fax: 01904 652625e-mail: [email protected] Web: www.familyfund.org.uk

Language Line Limited11–21 Northdown Street, London N1 9BN Tel: 020 7520 1430 Fax: 020 7520 1450 e-mail: [email protected] Web: www.languageline.co.uk

Useful resources

Association for Children with Life-threatening and TerminalConditions and their Families (ACT) and the Royal College ofPaediatrics and Child Health (2003) A Guide to the Developmentof Children's Palliative Care Services, 2nd edn. ACT.

Early Support–material supporting coordinated services - seesheet 11

National Primary Care Research and Development Centre (May 2000) Executive Summary 16 – Supporting familiescaring for a technology-dependent child in the community.www.npcrdc.man.ac.uk/Publications/Es16.pdf

Rhodes A (1999) Promoting Partnership: Supporting disabledchildren who need invasive clinical procedures. Barnados.


Hospital care – the role of the health visitorHospital appointments for tests, procedures,consultations and admissions are an integral part of lifefor many parents with a child with a serious disability orhealth condition. Some appointments are planned;others may be unplanned, occurring as a result of anemergency when symptoms are uncontrolled or thechild’s condition deteriorates. Some children receive carefrom a variety of health and social care professionals andlong awaited appointments may be on the same day indifferent venues. These events can be very stressful.Parents’ stress may be compounded by the additionalresponsibilities of caring for other children, an elderlyrelative, or difficulties related to work or travel. Healthvisitors play a key role in assisting parents in thesestressful situations.

Parents can often feel guilty about asking for help. It is an enormous relief, therefore, when a health visitorbecomes well informed about the family, and the otherhealth professionals involved in the child’s care. It is alsohelpful when health visitors liaise with the hospitalprofessionals most closely involved in the child’s care.

Parents have a right to be with their child whenevertheir child receives hospital care (unless a generalanaesthetic is being given). There may be times duringan admission, however, when a parent cannot bepresent. In these circumstances, it is helpful if parentsprepare information about their child prior to admission.This might include providing a description of the waysin which the child communicates pain or hunger, or thename by which the child prefers to be called or afavourite drink (or ‘comforter’). The Early SupportFamily File is a useful tool to facilitate this -see sheet 11. Alternatively after admission a list of likesand dislikes can be expanded and hung on the child’shospital bed.

Many hospitals produce resources and/or activities toassist the child and siblings before a planned admission.Organisations such as Action for Sick Children produce arange of relevant resources (see Useful organisations).

Key points

l Be aware that many parents have become experts intheir child's care. Listen to and value this knowledge.Encourage parents to utilise their expertise, forexample, in preparing information about their childprior to a hospital admission.

l If there is a recurrence of a particular medical problemor a specified health issues confirm whether the childhas priority or direct access to a specific ward.

l With parents’ permission, liaise with appropriatehospital staff.

l Maintain regular contact with hospital servicesproviding relevant information and facilitating early discharge.

l Establish contact with other professionals for adviceand information. Parents are reassured by theknowledge that health and social care professionalsare working together and pooling their knowledgeand skills.

l Offer assistance in formulating questions for relevanthealth professionals. Recognise that whilst parentsmay think of questions at the time of caring for theirchild, they may fail to recall these at the time of ahospital appointment.

l Underscore the value of Parent Held Records suchas the child’s Early Support Family File. This will helpparents and professionals understand the child’sphysical condition and clinical care.

l Recognise that some parents will want more detailedinformation than others. Tailor information torespective need.

l Re-iterate the advantages of having all relevantcorrespondence at each hospital appointment oradmission.

l Encourage parents to keep their own records andoffer assistance in maintaining records.

l Communicate the importance of clearly documentedinformation.

l Remind other professionals to make use of ‘ParentHeld Records’ such as the Early Support FamilyFile and update as appropriate.

l Identify whether parents have been offered details of relevant support groups; offer information as appropriate.

l Ensure parents are aware of procedures for claimingtravelling costs, where relevant. Offer informationabout claiming hospital visiting costs, local transportschemes and voluntary sector organisations. Contacta Family and the Family Fund can give relevant advice(see Useful organisations).

l Ensure that cultural differences are fully supported –offer interpreters or health advocates wherenecessary, as well as relevant translated literature,where possible. Further information is available fromLanguage Line (see Useful organisations).

INFORMATION SHEET 6

Keeping things going at home

Whilst the benefits of encouraging parents to stay withtheir child in hospital are well known, tensions can arisein relation to other responsibilities.

Key points

l Signpost parents to local and national voluntaryorganisations which offer advice on benefits andfinancial entitlement. Some benefits may beaffected by their child’s admission to hospital. The Contact a Family helpline offers advice on this(see Useful organisations).

l Inform working parents of their rights for parentalleave, flexible leave and time off for dependents. The Contact a Family helpline offers advice on this(see Useful organisations).

l Offer assistance in identifying suitable childcare.

l If families are unhappy with their child's care,encourage them to talk to relevant staff. Offer toaccompany them to meetings, or encourage parentsto talk to the Patient Advice and Liaison Service(PALS) (see Useful resources).


INFORMATION SHEET 6


Action for Sick Children (England and Wales)No 3 Abbey Business Centre, Keats Lane, Earl Shilton,Leicestershire LE9 7DQ Tel: 01455 845 600e-mail: [email protected] Web: www.actionforsickchildren.org

Action for Sick Children (Scotland)172 Leith Walk, Edinburgh, EH6 5EATel: 0131 553 6553e-mail: [email protected]: www.ascscotland.org.uk

Contact a Family209–211 City Road, London EC1V 1JN Freephone Helpline: 0808 808 3555 (10am–4pm, Mon–Fri,Mon 5.30-7.30pm) Fax: 020 7608 8701Textphone: 0808 808 3556e-mail: [email protected] Web: www.cafamily.org.uk

Family Fund Unit 4 Alpha Court, Monks Cross Drive, York YO32 9WN Tel: 0845 130 45 42 Fax: 01904 652625e-mail: [email protected] Web: www.familyfund.org.uk


Useful resources

National Service Framework (NSF) for children and young peoplewww.dh.gov.uk Use the A-Z site index from the home page tofind all documents including standard 8 for disabled childrenand young people and those with complex health needs.

The Early Support Family File - see sheet 11

PALS are hospital based advice and advocacy services whichhave access to in-house databases and information sources.Information about local PALS services can be obtained fromhospitals, clinics, GP surgeries, health centres, NHS Direct.Tel: 0845 4647 orNHS Direct website – www.nhsdirect.nhs.uk

The Contact a Family Directory, Specific Conditions, Rare Disorders and UK Family Support Groups, annual edn. Contact a Family.

Health for all children 4:Guidance on implementation inScotland, Scottish Executive 2005, www.scotland.gov.uk

Delivering for Health, Scottish Executive 2005,www.scotland.gov.uk (SEHD Action Framework from theNational Framework for Service Change in the NHS in Scotland)

Referral to a genetics clinic

This information sheet is intended for all healthprofessionals making a neonatal or paediatricreferral to a genetics clinic.

Parents may feel confused by the offer of a referral to agenetics clinic immediately, or soon after, their child’sbirth, or on first receiving their child’s diagnosis. Whilstthey may welcome the opportunity to have a diagnosisconfirmed, tensions can arise around whose side of the

family the condition has come from. Parents mayblame themselves or each other. Many families feelanxious because this appointment, or event, is outsidetheir everyday experience. Some may even feel that itcould lead to social stigma, shame or guilt. With this inmind, it is important that the referral process istransparent and conveyed to families in a way theyunderstand.

Many parents attend a genetics appointment becausethey want a diagnosis and to find out why this hashappened. They want their concerns to beacknowledged. A few parents will want a geneticsappointment to identify the gene alteration in the familyand to discuss any possible risk to other familymembers. Some may attend hoping for an increasedcertainty where, in fact, this may not be possible. Forothers, a genetics appointment can seem like yetanother appointment with another specialist and furtherrepetition of information. Some parents may have littleidea about what to expect from their appointment andthis lack of understanding can make it difficult for themto formulate questions in advance.

There is very little research into what parents need toknow or the kind of support they may need at the timeof referral to a genetics clinic. Contact a Family hasdrawn up an ‘action list’ (see overleaf), which has beencompiled from the observations of health professionals,workers in the voluntary sector and parents. This list willhopefully serve as a useful training resource or as thebasis of an audit trail for parents’ information andsupport needs at the time of referral.

Searching for information on the Internet

Prior to a genetics appointment, parents may search forinformation on the Internet. It is useful if they aredirected towards the websites of reputable institutionssuch as hospitals, universities or a government body.Good medical information will be authored and dated. It is helpful if parents are reminded that not all theinformation they find will be relevant to them and thatsuch information should be discussed with theconsultant or counsellor at their appointment.Guidelines for evaluating medical information can alsobe provided. The Contact a Family internet leafletprovides guidance to families on evaluating sources ofmedical information and directs them to reliablewebsites. (See useful resources.) For more detail oninternet use, see sheet 10.

INFORMATION SHEET 7


British Society for Human Genetics (BSHG)Clinical Genetics Unit, Birmingham Women’s HospitalBirmingham B15 2TG Tel/Fax: 0121 627 2634 Fax: 0121 623 6971e-mail: [email protected] Web: www.bshg.org.uk



Unique – Rare Chromosome Disorder Support GroupPO Box 2189, Caterham, Surrey CR3 5GNTel/Fax: 01883 330 766e-mail: [email protected] Web: www.rarechromo.org

Useful resources

Barr O, Millar R (2003) Parents of Children with IntellectualDisabilities: Their Expectations and Experience of GeneticCounselling. Journal of Applied Research in IntellectualDisabilities 16 (3): 189–204.

Contact a Family Factsheet: A Genetic Condition in the Family. www.cafamily.org.uk/genetics.htmlContact a Family: Internet Leafletwww.cafamily.org.uk/paptinternetleaflet.pdf

Genetic Interest Group (GIG) Meeting the needs of patients andtheir families – A patient centred checklist for clinical genetics.www.gig.org.uk/docs/gig_clinical.pdf

Skirton H, Patch C (2002) Genetics for HealthcareProfessionals: A lifestage approach. Bios, Oxford.

Skirton H (2001) The client’s perspective of genetic counselling– A grounded theory study. Journal of Genetic Counselling10 (4): 311–329.



INFORMATION SHEET 7

Action list: referral to a genetics clinic

The following has been discussed.

A clear explanation of why the patient is being referred.

An outline of what is likely to happen at a genetics appointment:

l family history

l physical examination/photograph

l offer of testing, if requested and available.

A diagnosis may not always be confirmed with a test.

An explanation of why family history is important.

An explanation of the difference between genetic counselling and therapeutic counselling. Geneticcounselling has been defined as, “A communication process which deals with human problems associatedwith the occurrence or the risk of occurrence, of a genetic disorder in a family”. (American Society ofHuman Genetics, 1975)

The process of genetic referral within the region e.g. is there a home visit?

How long a family will be in the clinic at a genetics appointment.

The estimated waiting time for the:l genetics appointment (1 week, 1 month, 3 months)l results of investigations (not always known)

Information about a pre-clinic leaflet to be sent by the genetics centre prior to the appointment.

Information about a summary letter which will be sent to the patient, referring clinician and GP.

Suggestion of taking a partner, friend or close relative along to the appointment.

Help in formulating relevant questions prior to the genetics appointment.

Details of a health professional or voluntary organisation who may be contacted prior to the appointment

Patient questions.

Offer of further information in the patient’s language e.g. London IDEAS Translation Project. The LondonIDEAS Translation Project is currently developing accessible patient information leaflets and audiotapes inup to 12 languages about issues relating to genetics and genetic services. For more information, go to theLondon IDEAS website: www.londonideas.org

Offer of written information on:

l Genetic counselling e.g. A Genetic Condition in the Family, Contact a Familywww.cafamily.org.uk/genetics.html

l Helpful questions e.g. Has your child a genetic disorder – What do you need to know from whom?Genetic Interest Group www.gig.org.uk/docs/consortium-leaflet.pdf

l Chromosomes e.g. The Little Yellow Book: A Guide to Rare Chromosome Disorders (vol 1), Unique (see Useful organisations).

Patient name/hospital number

Referring clinician

Date

Printed by Contact a Family, 209-211 City Road, London EC1V 1JN

Support for fathers, siblings and grandparentsThis information sheet is intended for all healthprofessionals meeting families.

All members of the family, whatever the family network,are affected when a child has a disability, medicalcondition or rare disorder. As such, family members canfeel isolated and let down if their needs for informationand support are not met at significant times in thechild’s life.

Fathers

Fathers play an integral role in the family when a child isdisabled. However, many fathers feel excluded fromcertain aspects of the child's care. They often feel thatthe support systems in place are more beneficial fortheir partners. A diagnosis may be given without afather being informed or present; or meetings may beregularly arranged at times he cannot attend. The resultis that a father can feel he has missed out on keyinformation.

When information is given, it is important to includethe father whenever possible. He too is part of a widernetwork of family members and friends and may haveto relay information. Improved support, information andthe opportunity to access services can result in a fatherfeeling much more involved in the care of his child.Fathers can feel particularly isolated when they are notmeeting other fathers in a similar situation. This may beparticularly true for fathers who are the main carer orwho have left the family home.

Key points

l Recognise the father’s need for support and inclusionat significant times.

l Keep fathers as fully informed as possible and offersupport as appropriate. This helps them feel includedin their child’s care.

l Be aware that family structure varies and that somefamilies are father-led. There may be a step-father aswell as a biological father to inform.

l If the father is unable to attend, offer a tape recordingof the consultation or offer to call. Also offerfather-specific information to the mother to pass onto him (see Useful resources).

l Whenever possible, arrange meetings at home. This will allow fathers, siblings and other familymembers, such as grandparents, to share informationand offer mutual support. This may also strengthenfamily relations.

l When parents attend together, recognise that fathersand mothers are likely to absorb information atdifferent rates, and express different concerns. Theymay well grieve in different ways and at differenttimes. Tailor information and support to the needs ofthe father as well as the mother.

l Ask if and when fathers would like information onsupport groups or national organisations, such as acondition-specific group. Fathers might find it helpfulto meet other fathers in a similar situation (seeUseful organisations).

l Ensure that cultural differences are fully supported –offer interpreters or health advocates wherenecessary, as well as relevant translated literature,where possible. Further information is available fromLanguage Line (see Useful organisations).

l Be aware of conflict between parents.l If appropriate, offer a referral to a specialist adviser on

employment issues for advice on returning to workand employment rights (see Useful resources).

Siblings

Brothers and sisters share many of their parents’concerns. Some siblings share the responsibility for theadditional care needs of their brother or sister. As a result,they may have less time for themselves, to play with theirfriends or do their homework. Some siblings may not fullyunderstand the disability themselves and may strugglewith explanations to classmates and friends. They mayalso have misconceptions about the condition.

Key points

l Offer age-appropriate written material that addressesissues faced by siblings, such as getting used to anew baby or grieving the loss of a brother or sister(see Useful resources).

l Aim to provide support that is flexible enough toaccommodate the needs of siblings as well as thedisabled child and their parents. Young siblings, forexample, will need simple, clear information thathelps them to fully understand their brother orsister’s disability.

l Identify whether a sibling support group or youngcarers group is available. Some condition-specificorganisations offer the opportunity for siblings to getin touch with each other. They may also runworkshops on sibling issues (see Useful resources).

INFORMATION SHEET 8

l Ascertain how siblings are progressing at school; and where appropriate contact the teacher withparents’ permission.

l Visit the family when siblings are at home. Ask themquestions about how they are getting on at schooland with their friends. Ask them about their hobbies.This will help them know that they are special too.

l Encourage families to include siblings. Parents mayneed help in responding to siblings’ questions;encourage them to be honest in their responses.

l Offer to facilitate a family discussion to help thefamily formulate a plan for future care.

Grandparents

Grandparents may find themselves in an unfamiliar anddifficult situation. It may be that they are struggling tocome to terms with their grandchild’s disability. Theymay also be distressed by their son or daughter’s ownconcerns. Some grandparents become very closelyinvolved whilst others find this difficult and withdraw.Grandparents often feel responsible if the condition isfound to be genetic.

Grandparents may feel excluded from the normalinformation networks available to parents. As a result,they often turn to the parents for information aboutthe child.

Key points

l Be aware that if a grandparent is well informed abouta disability or health condition, this knowledge andunderstanding can be an asset to the entire family.

l Offer details of a local or national grandparents’support group. Contact a Family produces afactsheet containing advice for grandparents (see Useful resources).

l Recognise the need to strike a balance betweeninvolving grandparents and respecting the primarycarers’ wishes.

l Ensure that everyone knows what is happening.Support from family and friends is valued by parents.

Useful organisationsACT (Association for Children with Life-Threatening orTerminal Conditions and their Families)Orchard House, Orchard Lane, Bristol BS1 5DTHelpline: 0845 108 2201 Fax: 0117 930 4707e-mail: [email protected]: www.act.org.uk

Contact a Family 209–211 City Road, London EC1V 1JN

Freephone Helpline: 0808 808 3555 (10am–4pm, Mon–Fri,Mon 5.30-7.30pm) Fax: 020 7608 8701 Textphone: 0808 808 3556e-mail: [email protected] Web: www.cafamily.org.uk

Fathers Direct Web: www.fathersdirect.com


Grandparents Plus18 Victoria Park Square, Bethnal Green, London E2 9PFTel: 020 8981 8001e-mail: [email protected] Web: www.grandparentsplus.org.uk


Sibs Meadowfield, Oxenhope, West Yorkshire BD22 9JD Tel: 01535 645 453 Fax: 01904 652625e-mail: [email protected] Web: www.sibs.org.uk

The Child Bereavement TrustAston House, West Wycombe, High Wycombe, Bucks HP14 3AGHelpline: 0845 357 1000 Tel: 01494 446 648 Fax: 01494 440 057e-mail: [email protected] Web: www.childbereavement.org.uk

Useful resources Contact a Family Factsheet: Fatherswww.cafamily.org.uk/fathers.html

Contact a Family Factsheet: Siblingswww.cafamily.org.uk/siblings.html

Contact a Family Factsheet:www.cafamily.org.uk/grandparents.html

Contact a Family Factsheet: Working and caring for a disabled child. www.cafamily.org.uk/employment.html

Contact a Family Factsheet: Relationships and caring for a disabledchild. www.cafamily.org.uk/relationships.html

Meyer DJ (editor) (1995) Uncommon Fathers: Reflections onRaising a Child with a Disability. Woodbine House.

The Child Bereavement Trust Factsheet: Understanding bereavedchildren and young people.www.childbereavement.org.uk/uploads/articles/Bereaved_Children_6pp.pdf

West S (2000) Just a Shadow: A review of support for the fathersof children with disabilities. The Handsel Trust.


INFORMATION SHEET 8

Relationships

The impact of caring for a disabled child can putconsiderable strain on family relationships. Contact aFamily have a factsheet that is intended as a usefulguide for parents of disabled children struggling withrelationship issues. (See useful resources)

Good practice in sharing news

“I think that conveying difficult news to parents isjust as much of an art form as doing an operationand it’s just as important to be self-critical”Professor Sir David Hall, President of the Royal College ofPaediatrics and Child Health 2000–2003

It is widely known that sharing significant news withparents about a child is a challenging task requiring skilland sensitivity. Whether there is an established existingrelationship, or news is shared at the first meeting, this islikely to be one of the most significant pieces ofinformation parents ever receive.

It is often helpful to see sharing concerns withparents as a process, rather than a single event. Before,during and after this process, it is important to be awareof the messages communicated both verbally and non-verbally to parents. Parents’ experience at this time canhave a huge impact on them and their child’s future. Itmay also influence:

l How parents share news with friends and otherfamily members

l Parents’ ability to respond to their new situation

l Future working relationships with professionals

l Parents’ expectations of their child.

Right From The Start

Right From The Start (RFTS) is a national initiative thataims to promote good practice at the time news isshared with families of a child’s additional needs. Thisnews could be concerns about a child’s development, adiagnosis of a physical or sensory impairment, learningdifficulty or information regarding a child’s complexhealth needs. The work of RFTS has been developed inpartnership with parents, professionals and disabledpeople and is informed by a report (Leonard 1994)which examined the experiences of parents at or aroundthe time of diagnosis in their children.

The RFTS project acknowledges that sometimeschildren and their families live without a diagnosis. Insome situations, it may be necessary to do tests before adiagnosis can be given or confirmed. Honest, transparentcommunication is critical to developing an effectivepartnership between parents, health professionals andthe child.

The project has developed key principles forprofessionals sharing news with families. It alsopromotes a good practice framework and a range of

resources and training materials to support sensitivepractice at this time. The points outlined below arebased on the RFTS template:

Value the child – as a child first, their conditionor disability second:

l Always use the child’s name

l Avoid predictions and pronouncements about thechild’s future

l When sharing news, keep the baby or child with theparents whenever possible

l When sharing news about an older child, considerwhether the child should be present.

Respect parents and families:

l Support and empower parents

l Listen to parents and share information sensitivelyand honestly

l Treat parents’ concerns seriously

l Use plain, understandable language and giveexplanations

l Discuss prognostic uncertainties openly and provideopportunities to ask questions

l Check the parents’ understanding of the situation

l Ensure there is an appropriate follow-up and provideany additional information needed

l Acknowledge and respect cultural differences.

Support for professionals:

l Acknowledge and address personal and professionaldevelopment needs

l Ensure continuous personal and professionaldevelopment

l Give opportunities for debriefing for all team members

l Use peer support and critical reflection to inform andenhance practice.

The key points are based on the RFTS Template – goodpractice in sharing the news. To find out more aboutRFTS visithttp://www.scope.org.uk/earlyyears/prof/start.shtmlor e-mail: [email protected]

INFORMATION SHEET 9


ACT Association for Children with Life-Threatening orTerminal Conditions and their FamiliesOrchard House, Orchard Lane, Bristol BS1 5DTHelpline: 0845 108 2201 Fax: 0117 930 4707e-mail: [email protected] Web: www.act.org.uk

ARC (Antenatal Results and Choices)73–75 Charlotte Street, London W1T 4PN Helpline: 020 7631 0285 (10am–5.30pm, Mon–Fri)Tel/Fax: 020 7631 0280 e-mail: [email protected] Web: www.arc-uk.org

Capability Scotland11 Ellersly Road, Edinburgh EH12 6HYTel: 0131 313 5510 Fax: 0131 346 1681Web: www.capability-scotland.org.uk



Mental Health FoundationFoundation Sea Containers House, 20 Upper Ground, London SE19QBTel: 020 7803 1100 Fax: 020 7803 1111e-mail: [email protected] Web: www.mentalhealth.org.uk

National Portage AssociationPO Box 3075, Yeovil BA21 3FB Tel/Fax: 01935 471641 (9am-1pm, Mon and Thurs)e-mail: [email protected] Web: www.portage.org.uk

SANDS (Stillbirth and Neonatal Death Society)28 Portland Place, London W1B 1LYHelpline: 020 7436 5881 (10am–4pm, Mon–Fri) Tel: 020 7436 7940 Fax: 020 7436 3715e-mail: [email protected] Web: www.uk-sands.org

Scope6 Market Road, London N7 9PWHelpline: 0808 800 3333 (9am–9pm Mon–Fri, 2–6pm Sat–Sun)Tel: 0207 619 7100e-mail: [email protected] Web: www.scope.org.uk

SWAN (Syndromes Without A Name)6 Acorn Close, Great Wyrley, Walsall WS6 6HPTel/Fax: 01922 701 234e-mail: [email protected] Web: www.undiagnosed.org.uk

The Child Bereavement TrustAston House, West Wycombe, High Wycombe, Bucks HP14 3AG Tel: 0845 357 1000 Fax: 01494 440 057e-mail: [email protected] Web: www.childbereavement.org.uk


INFORMATION SHEET 9

Useful resources

Abramsky L, Hall S, Levitan J, Marteau TM (2001) What parentsare told after prenatal diagnosis of a sex chromosomeabnormality: interview and questionnaire study. British MedicalJournal 322 (7284): 463–6.

Aspinall CL (2002) Dealing with the prenatal diagnosis ofclefting: a parent’s perspective. The Cleft Palate-CraniofacialJournal 39 (2): 183–7.

Buckman R (1992) How to Break Bad News: A Guide for HealthProfessionals. Parthenon Pubications Group.

Contact a Family factsheet: Living Without a Diagnosiswww.cafamily.org.uk/undiagno.html

Kerr SM, McIntosh JB (1998) Disclosure of disability: exploringthe perspectives of parents. Midwifery 14 (4): 225–232.

Leonard A (1994) Right From The Start: Looking at diagnosis anddisclosure – Parents describe how they found out about theirchild’s disability.www.rightfromthestart.org.uk/docs/rfts_report.pdf

Pearson D, Simms K, Ainsworth C, Hill S (1999) Disclosingspecial needs to parents. Have we got it right yet? Child: Care,Health and Development 25 (1): 3–13.

Public Health Genetics Unit, Parents as Partners: A report andguidelines on the investigation of children with developmentaldelay; by parents, for professionals, Cambridge GeneticsKnowledge Park, 2006

Robb F (1999) Congenital malformations: breaking the bad news. British Journal of Midwifery 7 (1): 26–31.

Training packs and courses

ARC (Antenatal Results and Choices) Communication skills andbreaking bad news: The implications of antenatal screening andtesting. One day training course.

Child Bereavement Trust (2004) Paediatric Post Mortem:Communicating with Grieving Families. A two-part training videoor CD Rom for all those whose work brings them into contactwith bereaved families when a baby or child dies. ChildBereavement Trust.

Right From The Start,http://www.scope.org.uk/earlyyears/prof/start.shtml

Shah R (1998) Sharing The News: A good practice guide andtraining pack for professionals working with Asian families whenthey are told about their child’s disability. Mental HealthFoundation

West Birmingham Portage Service (2003) Sharing Concerns: giving,hearing and living with the news of a child’s disability. A trainingvideo and resource pack. West Birmingham Portage Service

Contact a Family and othersources of informationContact a Family

Contact a Family is a UK charity providing support,advice and information to families with a disabled childincluding children with a physical, learning or behaviouraldisability or any ongoing health condition. The charity hasspecialist information on rare conditions and supportgroups and has a database of over 2,000 conditionscontaining evaluated information and will undertakeliterature searches on any other conditions for enquirers.They can provide advice to families on a wide range oftopics including getting help with finance, education andleisure. Contact a Family links parents on an one-to-onebasis where no support group currently exists.

Contact a Family operates on a confidential nationalfreephone helpline for professionals and parents fromMonday to Friday 10am-4pm, Mon 5.30pm-7.30pm

Contact details: Freephone Helpline: 0808 808 3555Textphone: 0808 808 3556Email: [email protected]: 209–211 City Road, London EC1V 1JN

Internet resourcesContact a Family’s website www.cafamily.org.uk includes:– The online Contact a Family Directory containingregularly reviewed, authored and dated information onover 360 disorders, many very rare, together with detailsof support organisations.

– An extensive range of factsheets available to download.

– Information about Contact a Family’s national,regional and local offices.

– Signposting to other sources of information and support.

Other sources of family supportwww.act.org.uk ACT, support for families of childrenwith life threatening conditionswww.arc-uk.org Information and support forparents throughout the antenatal testing processwww.bliss.org.uk Support for families ofpremature babieswww.childbereavement.org.uk Information forbereaved young people and families, and professionals www.uk-sands.org Support for parents and familieswhose baby is stillborn or dies soon after birth

INFORMATION SHEET 10

Keypoints

Use Contact a Family if there is information you need. Tell families about Contact a Family – Leaflets areavailable from Contact a Family to assist with this.

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Professional portals

www.dh.gov.uk Gives access to the index of allgovernmental organisations such as the Department ofHealth (DH), information and full texts of DHpublications, Health of the Nation targets, helplines.

www.nelh.nhs.uk UK National electronic Library ofHealth (NeLH) is the portal to all Specialist Libraries(formerly Virtual Branch Libraries) for Child Health andLearning Disability, the Cochrane Library collection ofsystematic reviews, databases and NHS information.

www.nih.gov/icd Gives links to all the US NationalInstitutes of Health with searchable databases.

omni.ac.uk Gives access to fully evaluated health sites.

www.premature-infant.com/resources.html –information on neonatal issues.

Patient portals

www.ich.ucl.ac.uk Contains an extensive archive of paediatric resources and the latest in care andresearch developments.

www.nhsdirect.nhs.uk The online arm of the National Health Service.

Information on specific disorders for professionals and patients

www.ninds.nih.gov/health_and_medical/disorder_index.htm Excellent information on a range ofneurological disorders provided by the US NationalInstitutes of Health with further links to research papers.

www.nlm.nih.gov/medlineplus Extensive USNational Library of Medicine encyclopaedia and healthtopic collection.

www.nlm.nih.gov/mesh/jablonski/syndrome_db.html Extensive range of information on learning disablementdisorders from the US National Library of Medicine.

www.rarediseases.org/search/rdbsearch.htmlThe site of NORD (National Organization for RareDisorders) gives access to a database of abstracts ofinformation on a huge range of disorders.

Evaluating information on the Internet

There is a huge amount of information available on-line.Assistance in evaluating this information is found at:www.judgehealth.org.ukContact a Family and the Information ManagementResearch Institute (IMRI), School of Informatics,Northumbria University have produced award winningguidelines for consumers searching for medicalinformation on the Internet.

The guidelines cover:

l the need for the name and background ofthe author and dated information. For exampleMedical texts in the Contact a Family Directory carryendorsements in the following form: Medical text last updated April 2004 by Dr R Auer, LRF Clinician Scientist, Barts & The LondonQueen Mary School of Medicine, London, UK

l details about the website producer and funder

l contact details or web links to cited organisations

l who the information is aimed at

l the design and accessibility of the site by people with visual and other impairments

The full guidelines and summaries can be found at theaddress above.

www.hiquality.org.uk/guide/evidence2.htm

This website is produced by the government fundedCentre for Health Information Quality. The information isappropriate for professionals who want to refer to theevidence base, references and peer reviews. Moreinformation can be found at the address above.

Information for families on usingthe internet

Families often search the internet to find out moreabout their child’s condition. It is important they knowhow to evaluate medical information found there.Contact a family can provide leaflets for healthprofessionals to give to families which provide guidancebased on the principles above.

www.cafamily.org.uk/paptinternetleaflet.pdf



Library/information services

Details of hospital libraries can be found by accessing theNational electronic Library for Health (NeLH) LibrarianPortal – www.nelh.nhs.uk/librarian/default.aspHospital libraries provide enquirers with a full range oflibrary services in person, by telephone or email. Most professional organisations will have a library orinformation service. Examples are:

– Chartered Society of Physiotherapy Library &Information Service www.csp.org.uk

– The Midwives Information and Resource Service(MIDIRS) www.midirs.org

– Royal College of Midwives Information Centrewww.rcm.org.uk

– Royal College of Speech Therapists’ InformationOffice www.rcslt.org/info.shtml

Useful organisationsChildren in ScotlandPrinces House, 5 Shadwick Place, Edinburgh EH2 4RGTel: 0131 228 8484 Fax: 0131 228 8585www.childreninscotland.org.uk

Council for Disabled Childrenc/o National Children’s Bureau8 Wakley Street, London EC1V 7QETel: 020 7843 1900 Fax: 020 7843 6313email: [email protected] Web: www.ncb.org.uk/cdc/


National Children’s Bureau8 Wakley Street, London EC1V 7QETel: 020 7843 6000 Fax: 020 7278 9512Web: www.ncb.org.uk

National Service Framework (NSF) for children and youngpeople.www.dh.gov.uk Use the A-Z Site Index from the home page, to find alldocuments including standard 8 for disabled children and young peopleand those with complex health needs

Wellcome Trust Information Service 210 Euston Road, London NW1 2BETel: 020 7611 8722 Fax: 020 7611 8369 e-mail: [email protected] Web: http:library.wellcome.ac.uk/

Early Support

This information sheet is intended for allprofessionals meeting families with disabledchildren in England.

Children who are born with a disability will requireongoing support and services as they grow up. It isimportant that families with very young children knowabout community based services and support, particularlyif they have spent long periods of time in hospital. Healthprofessionals should guide parents to appropriate servicesand ensure that information is available to help themthrough the early years.

Research into the needs of families of disabledchildren show very consistent messages. Families find itdifficult to

Find out about services that are available to help themMake sense of the role of different agencies andprofessionalsGet professionals to understand their situation andneeds in the context of the whole familyHave their own knowlege of their child recognised

A lack of coordinated approach between professionalsinvolved in the child’s care provides additional problemsfor the families already complicated lives.“We see 20 specialists contributing to our child’scare. You tell your story over and over again.Sometimes it feels like a full-time job justcommunicating with them all.”

What is Early support?The role of the Early Support program is to encourageagencies and services to work together to supportfamilies and provide practical tools and principles tosupport this process. Early Support materials (seeoverleaf) can be used flexibly in whatever way is mostuseful for individual families. The material is alreadybeing used by professionals working within medical,therapeutic, Early Years, Sure Start and childcarecommunities. Amongst those who might benefitmost are

Infants discharged from hospital where families needprompt, practical help to care for a child with medicaland other needs in the homeChildren whose additional support needs emergeonly with timeThose with obvious, on-going and multiple additionalsupport needsChildren with an obvious additional support need,but no ‘diagnosis’.


Keypoints

Visit the Early Support program website atwww.earlysupport.org.uk to find out more aboutthe Early Support program and view their material.Order printed versions of the material which is availablefree of charge to parents of young disabled childrenliving in England and professionals working with suchfamilies. (See overleaf)Find out more from the website, or by contacting yourlocal children’s centre or Social Services Children’sDisability team, whether others in your area are alreadyusing the Early Support program and link up with them.If there is no Early Support program running in yourarea, discuss with your team how you might make useof the material and/or introduce an Early SupportProgram.

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Early Support

Is the central Government mechanism for achievingbetter co-ordinated, family-focused services fordisabled young children and their families.Early Support was developed as a means ofimplementing the Government guidance forprofessionals working with disabled children –Together from the start (DoH/FDfES, 2003).It is integral to the restructuring of Children’sServices in response to Every Child Matters andfacilitates the achievement of objectives set by abroad range of Government policy documentsaimed at the delivery of services for young disabledchildren and their families including the NationalService Framework for Children. Early Supporthas been developed initially for children 0-3 butchildren’s centres and service providers acrossEngland are being advised that its principles andmaterials can be extended in their application tochildren aged 0-5.www.earlysupport.org.uk

Early Support materials

See table for details of ordering

A range of disability/ condition specific bookletsfor parents can be used to provide initial informationto parents about their child’s condition/disability andsources of further information and support. See belowfor list of conditions/disabilities.

The Early Support Family pack informs parents aboutthe services available to support them and also containsthe Early Support Family file. This is a standardfamily held record that supports

l Better co-ordination of services provided for the childand family

l More effective exchange of information betweenprofessionals working with the family.

l Reducing the number of times the family have torepeat their story.

At the heart of the file is a Family Service Planwhich encourage all the agencies working with a familyto discuss the support that is being provided and toagree priorities. The pack is not normally read inisolation and families get the best out of it when it isexplained by someone they know and trust over aperiod of time.

The Early Support Professional guidance isessential reading for anybody who works with familieswith very young disabled children, includingpaediatritcians, health visitors, nurses, speech andlanguage therapists, portage workers, physiotherapists,psychologists and occupational therapists. It shows how

The principles set out Together from the Start can beapplied flexibly in many different organisational settingsThe Early Support materials can be used to assist atoperational levelMulti-agency planning at strategic level supportsservice development.

The Early Support Monitoring protocol for deafbabies and children material is designed for familieswith a young hearing impaired child and for theprofessionals who work with them to track developmentfor the first 3 years of life. The accompanying guide‘How to use this protocol’ should always be readalongside.

Two new monitoring protocols, are currentlybeing piloted to support families and the professionalsworking with children with Down syndrome andchildren who are visually impaired.

The Early Support Service audit tool enables serviceproviders to measure the quality of the service they areproviding and plan for improvement. The tool is a multi-agency, pan-disciplinary instrument to audit currentservice provision at local level, plan for developmentand inspect service provision.

Key workers

Early Support promotes and facilitates the developmentof key worker services for families with young anddisabled children. The Early Support Family Pack isspecifically designed to help those taking on a keyworker role to deliver an effective service to families(see useful resources: Care Coordination network UK).


Useful resourcesCare Co-ordination Network UK (CCNUK) is an umbrella organisationpromoting and supporting care co-ordination or key working for disabledchildren and their families in England, Northern Ireland, Scotlandand Wales. Address: Social Policy Research Unit, University of York,Heslington, York YO10 5DD Tel: 01904 321959email: [email protected] Web: www.ccnuk.org.uk

Every Child Matters Provides information on programs supportingchildren and young people from birth to age 19 via the development ofmulti-agency services. Web: www.everychildmatters.gov.uk

National Service Framework for Children, Young People and MaternityServices: Standard 8 - disabled children and young people and those withcomplex health needs, 2005 Web: www.dh.gov.uk – search on ‘NSFStandard 8’.

Sure Start Is the government program to deliver the best start in life forevery child and brings together, early education, childcare, health andfamily support. Web: www.surestart.gov.uk

Together from the start (2003) Practical guidance for professionalsworking with disabled children (from birth to third birthday) and theirfamilies Web: www.dh.gov.uk – Search on ‘Together from the Start’.Tel: 020

Ordering Early Support Materials: These can be ordered direct from theEarly Years support website at www.earlysupport.org.uk or by contacting DfESpublications quoting the appropriate reference numbers. DfES Publications, POBox 5050, Sherwood Park, Annesley, Nottingham, NG15 0DJ, UKTel: 0845 602 2260 e-mail: [email protected]

Information for Parents Booklets:Autistic Spectrum DisorderCelebral PalsyDeafnessDown SyndromeLearning DisabilitiesWhen Your Child Has No DiagnosisMulti-Sensory ImpairmentIf Your Child Has a Rare ConditionSpeech and Languages DifficultiesVisual Impairment

Early Support Family PackEarly Support Professional guiadanceEarly Support Monitoring protocol fordeaf babies & childrenEarly Support Service audit tool

ReferenceESPP12ESPP10ESPP11ESPP13ESPP15ESPP16ESPP9ESPP18ESPP14ESPP8

ESPP1ESP33ESPP29 & ESPP30

ESPP34 & ESPP35


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Working withfamilies affectedby a disabilityor health conditionfrom pregnancy to pre-school

Documents

Transcript of Working withfamilies affectedby a disabilityor health conditionfrom pregnancy to pre-school