My Orange Book

An All Wales Hand Held Record forDisabled Children and Young People

with Complex Needs

Evaluation of Pilot

Jean Christensen Project Manager, Children’s NSF Welsh Assembly Government

December 2004

CONTENTS

PAGE1. Introduction 1

2. Methodology 3

3. Analysis of results of parent questionnaires 7

4. Analysis of results of staff questionnaires 16

5. Responses from voluntary organisations 24

6. Discussion 25

7. Recommendations 31

8. Annexe A – User Evaluation Questionnaire

9. Annexe B – Staff Evaluation Questionnaire

10. Annexe C – My Orange Book – parent focus groups (Contact aFamily Wales)

11. Annexe D – Report of Consultation with Disabled Young People fromJigsaw

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1. INTRODUCTION

The development of the National Service Framework (NSF) for Children,Young People and Maternity Services in Wales began in September 2002. Acentral concept to the development of this framework was the development ofservices around the needs of children, young people and their families. Toinform this process the Welsh Assembly Government commissioned a seriesof consultation exercises with children, young people, parents and carers.One of the consultation exercises was with parents and carers of disabledchildren and young people, and was carried out by Contact a Family Wales(September 2003). In this consultation with parents, one of the consistentthemes which emerged was the need for a hand-held record for disabledchildren with complex needs. Parents reported that they found the process ofrepeating the same information to many different professionals exhaustingand sometimes upsetting. They felt that a hand-held record would not onlymean that this would no longer be necessary, but should also improve the co-ordination of care for their child.

This need, identified by parents, was addressed as the following key action inthe consultation version of the Children’s NSF:

5.4. A hand held record is provided for all disabled childrenwith complex needs that complements the Personal ChildHealth Record, in line with Assembly Government guidance tobe issued in 2004. (Page 84- Full Version)

The Children’s NSF was launched for consultation on 15 October 2004 andthe final standards are expected to be published in summer 2005. It was feltthat this key action should not wait that long to be delivered and so was ‘fast-tracked’ by introducing it as a Service and Financial Framework (SaFF)Target for 2004/05. This SaFF Target states:

To ensure that by March 2005 parents of every disabled child(as defined by the Children Act 1989) with complex needs (i.e.children who require more than two agencies, not includingthe universal services which all children receive) have a handheld record detailing the case history for that child inaccordance with central guidance to be issued in 2004.

To take this work forward a Task and Finish Group (TFG) was established inJanuary 2004 composed of key stakeholders from around Wales(membership can be viewed on the Children’s NSF web site:http://www.wales.nhs.uk/nsf - click on Children’s NSF and follow the links toHand Held Records for Disabled Children). The group examined a number ofhand held records for disabled children with complex needs which had beendeveloped in the UK. They decided that the Orange Book, developed as aHeath Action Zone (HAZ) funded project by Cornwall Partnerships NHS trust,was the record which was the closest to meeting the criteria decided on by theTFG for this record (http://www.cornwall.nhs.uk/haz - click on Haz Projects

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and follow the links to Joint Agency Strategy for Children with ComplexNeeds). Contact was made with Cornwall Partnerships NHS Trust and apresentation was given to the TFG by Chris Millard, who leads on this projectin Cornwall. Permission was gained from Cornwall Partnerships NHS Trust toadapt the Orange Book developed by them for use in Wales. A number ofamendments were made to the Orange Book by the TFG over a series ofmeetings. Every effort was made however to try and maintain consistencywith the version developed in Cornwall as this would be more helpful for thosechildren who crossed the border for treatment, especially if use of the OrangeBook developed in Cornwall spread to other parts of England. The Cornwallversion had also been independently evaluated by Exeter University and thatwork was used to guide revisions for its use in Wales. The resultant revisedversion was called My Orange Book and was used as the pilot version inWales. A copy of this record and accompanying guidance notes can beaccessed on the Children’s NSF web site: (http://www.wales.nhs.uk/nsf - clickon Children’s NSF and follow the links to Hand Held Records for DisabledChildren).

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2. METHODOLOGY

Pilot of My Orange Book

The timescale for the development, piloting, evaluation and distribution of thefinal version of My Orange Book has been directed by the need for NHSTrusts and LHBs to meet the SaFF Target for 2004/05. As a result of this,only a short pilot lasting 3 months was possible. Development of the pilotversion was completed by April 2004 and the 3-month pilot was initiated from17th May – 6th August 2004. Such a short timescale was less than desirablefor an effective evaluation and so attempts were made to make it as wideranging as possible. The evaluation was also enhanced by holding focusgroups with parents and a consultation with disabled young peoplethemselves.

120 disabled children and young people with complex needs were recruitedinto the pilot in diverse areas around Wales, including rural and urban areasas well as some predominantly Welsh speaking areas. Recruitment andsupport for children and families who participated in the pilot was provided byTFG members, who were themselves selected from diverse areas of Wales.Guidance Notes for Professionals as well as Guidance Notes for Parentswere produced to accompany My Orange Book. The professional whodistributed the book to parents was expected to take time to explain how thebook should be used and talk the parents through the different sections of thebook. They were also expected to stay in regular contact throughout the pilotand provide support to parents who required assistance in completion of thebook. It was explained to parents that participation in the pilot was completelyvoluntary and that they could withdraw at any stage if they wished. A consentform was signed by the parent and filed in the professional records. Datasupplied to the Welsh Assembly Government was anonymized.

Separate questionnaires were developed for users (parents, carers or youngpeople who had participated in the pilot) and staff to complete at the end ofthe 3-month pilot (available on the Children’s NSF web site). These weredistributed via the professional who had distributed the book and providedthem with support during the pilot. Freepost envelopes were provided for thereturn of questionnaires to the Assembly Government.

A copy of My Orange Book together with accompanying guidance notes andquestionnaires was also available on the Children’s NSF web site.Professionals or parents who were not participating in the pilot wereencouraged to take a look at the record on the web site and complete aquestionnaire with their views for improvement. Questionnaires could becompleted on-line or downloaded and posted to the Assembly Governmentfollowing completion.

The closing date for the receipt of questionnaires was 13th August 2004. Asonly 35 questionnaires had been returned from users by this date, the closing

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date was extended to 10th September. A total of 53 questionnaires werereturned from staff and 45 questionnaires from users by the final closing date.

Information from the questionnaires was transferred to an Access databasefor analysis. Data entry quality was assured through independent validationof every 5th record entered.

Focus Groups with Parents

As the pilot of My Orange Book was shorter than desirable it was decided thatthe scope of the evaluation should be broadened to include focus groups withparents and carers. Contact a Family Wales carried out this exercise at therequest of the Welsh Assembly Government. They consulted with 40 parentsin 6 different areas of Wales. These were parents of disabled children withcomplex needs but who had not participated in the pilot. The report of thisexercise undertaken by Contact a Family is appended to this evaluation(Annexe C).

Consultation with Disabled Young People

Many of the children and young people who would qualify for My OrangeBook would have highly complex needs and many would have difficultycommunicating. As a result, consulting with children and young people whomight use My Orange Book was particularly challenging. Questionnaires sentout to those who participated in the pilot were for parents and carers tocomplete, although young people who participated in the pilot were alsoencouraged to complete a questionnaire if they wished. No questionnaireswere however received from the young people who participated in the pilot.

At the request of the Welsh Assembly Government a limited consultation wascarried out with disabled young people by Jigsaw, a support group fordisabled young people that operates in Pembrokeshire. Ten young peoplefrom 16-20 years commented on the pilot version of My Orange Book. Thesewere a mix of young people with physical impairments and/ or mild learningdifficulties who did not have sufficient complex needs themselves to qualify forMy Orange Book, though some of the young people may have qualified forthis record when they were younger. The purpose of the record wasexplained to the young people and they were asked to comment on whetherthey felt it would meet the needs of disabled children and young people withcomplex needs.

Comments from the young people from Jigsaw are appended to this report atAnnexe D.

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Consultation with Professionals

Information regarding the pilot of My Orange Book was sent to ChiefExecutives of NHS trusts and LHBs, Directors of Social Services, Heads ofSEN, voluntary organisations and relevant Assembly Government Officials.Each received a copy of My Orange Book as well as guidance notes andquestionnaires with a request that it was distributed to the relevantprofessionals in their area for comment. The documentation was also placedon the Children’s NSF web site with electronic versions of the questionnaires.In addition, a number of presentations were made during the pilot period toprofessional conferences and meetings to raise awareness of this project andencourage staff to look at the record and provide comments.

In addition to the 53 questionnaires received from staff, 9 professionals sent incomments by letter (some of these representing the views of groups such asvoluntary organisations) and these have also been considered in thisevaluation report. Information from Staff Questionnaires was transferred to anAccess database and validated as for the User Questionnaires.

Compliance with Welsh Language Act

All written materials produced for this pilot were bilingual to comply with WelshLanguage Act requirements. This created particular difficulties in theproduction of My Orange Book. The usual ‘tilt and turn’ format would not workfor the book because the dividers would be in the wrong place when the bookwas turned. It was also not possible to place the English text facing theWelsh text as pages which were not relevant for the child, e.g. “How tomanage my diabetes”, would be removed before the book was offered to thefamily. To allow this to happen the only layout possible was to use Englishtext on one side of the page with Welsh text on the reverse.

The option of producing separate Welsh and English versions was discussedwith the Welsh Language Unit, but it was decided that Welsh speakingparents may chose the English version because they would feel that it wouldbe more likely to be read by all professionals involved with the child. It wasconsidered that this may be in breach of the Welsh Language Act in whichWelsh and English have to be treated with equal status.

It was agreed that the pilot version of My Orange Book should utilise a back-to-back Welsh/ English format and that this presentation would be evaluatedas part of the pilot.

Recommendations from this Evaluation

The recommendations at the end of this report have taken into account theresults of the pilot exercise, the focus groups held with parents carried out byContact a Family and the consultation with disabled young people carried outby Jigsaw.

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As many conflicting views were received it has not been possible to includeeveryone’s views but the recommendations have been based on the views ofthe majority.

The recommendations from this report will be used to produce a final versionof My Orange Book which will be distributed to families by the end of March2005. Guidance was issued from the Welsh Assembly Government as aWelsh Health Circular [WHC(2004)085] in December 2004 which details howthis will take place.

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3. ANALYSIS OF RESULTS OF PARENT QUESTIONNAIRES

A copy of the questionnaire that was distributed to users of My Orange Bookis appended to this report at Annexe A.

Although the return of questionnaires was relatively low (38%) the samplewas nevertheless representative with regard to distribution of age andidentified problems as illustrated in figures 3.1 and 3.2.

Figure 3.1. Distribution of age of children who participated in the pilot

0-1 Years2%

1-3 Years18%

4-7 Years32%8-11 Years

22%

12-14 Years13%

15-19 Years11%

Not specified2%

The number of children participating in the pilot under one year of age wasvery low (2%) and this was as expected as professionals had been advised tooffer the book to parents at a time when they felt that parents would welcomeusing the record. As many of the needs of disabled children do not becomeevident until the child grows and develops it was not anticipated that manychildren under one year of age would require the record.

Most of the children who participated in the pilot had very complex needs. Themean number of identified problems per child was 6. None of the childrenhowever were diabetic and only 2 of the young people were in receipt oftransition services. These two sections of My Orange Book were thereforeinadequately tested in the pilot. There were sufficient numbers of children

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with identified needs in other areas to ensure that the remaining sections ofthe book were adequately tested by the pilot sample.

Most of the questionnaires were completed by the main carer for the child (34)and 9 questionnaires were completed by a joint carer. Two questionnaireswere completed by ‘other’ carers, one of whom was a respite carer, the otherwas not specified.

Figure 3.2. Distribution of identified needs in children who participatedin the pilot

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Children were recruited into the pilot from diverse areas of Wales, includingrural and urban areas as well as some predominantly Welsh speaking areasin North Wales. Questionnaires were returned from the following areas:

� Neath Port Talbot (8 questionnaires returned)� Rhondda Cynon Taff (8)� Swansea (6)� Newport (5)� Cardiff (5)� Gwynedd (4)� Merthyr Tydfil (4)� Vale of Glamorgan (2)� Monmouthshire (2)� Unspecified (1)

Of those parents who returned their questionnaires 47% had completed theirchild’s copy of My Orange Book during the pilot period, 45% had partiallycompleted it, 4% did not complete the book and the remainder did not

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respond to that question. Language choice was not the reason for non-completion of the book as no parent stated that the book wasn’t available inthe language of their choice.

69% of parents stated that they did not need help to fill My Orange Book in.Of the 27% of parents who stated that they needed help with some sections,the sort of help that they required included addresses of professionalsinvolved with the child (1) and general guidance on information requested (4).

The results of responses to Qu 7 demonstrated that most parents found thebook helpful (80%) and easy to read (84%), but only 64% of parents found thebook easy to write in. 18% of parents stated that they would have like to havehad more information about how to complete the book though 87% stated thatthey knew who to contact if they had questions about the book. Only 9% ofparents stated that they felt too stressed to complete the book, and only 18%said that completing the book made them feel sad. However, 51% of parentsstated that they did not have enough time to fill the book in and so thisappears to be the main obstacle for completing the book. This is not anunsurprising finding when the complexity of the needs of these children isconsidered and the amount of time that parents therefore need to spend oncaring for them. 58% of parents stated that they enjoyed putting pictures intothe book. 80% of parents stated that they were pleased to have somewhereto write down all their child’s details and 73% wished that they had been giventhe book when their child was first diagnosed. 93% of parents hoped that thebook would improve communication with staff who worked with their child and87% of parents saw it as a means of giving their child a voice about the carethey received.

Other comments received in relation to Qu 7 included that the book wouldonly be useful if people took time to read it and concerns were expressedabout problems that might arise if the book were not kept up to date. Onerespondent felt that the book would not be useful if alternative therapies wereused.

Question 8 asked parents whether overall they felt that My Orange Book wasuseful and 82% of parents stated that they thought it was:

“During hospital stays it gives peace of mind whilst leaving togo for meals etc. During respite I felt that it was a reminderfor carers who have infrequent contact with my son. Lessrelevant for school.”

“I say yes but certain parties do not bother to read it.”

“The Orange Book is useful, as school and her respite carersare able to write in it as well, and they get to read everythingabout my daughter.”

“Proved to be invaluable when asked to go through medicalhistory with yet another S.H.O. on admission to hospital.”

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“Not very user friendly. A good idea but badly laid out.”

“It is a fantastic idea.”

When parents were asked whether they felt that the pages of My OrangeBook were relevant to their child’s needs (Qu. 10), 51% responded that theywere, 40% stated that they were partially relevant, 4% felt that they were notrelevant and the remainder did not respond to this question. When parentswere asked what pages they would like to see improved, the followingcomments were received:

� More on hearing and eyesight (3)� More information about who is allowed contact with the child (1)� Too much information for children to carry around (1)� Home, Family and Friends section – nice idea but not big enough� Therapists and carers should be combined with Medical details (3)� Medical details should be combined with Alert Pages at the front (1)� Diary should be bigger (1)� My Care Guide – not enough space (1)� Communicating with me – badly laid out and not enough space to

explain use of communication aids when child has no language (3)� My Personal Details – confusing to fill in and read (but first page is fine

and neat) (2)� My Personal Details – this section should come first in the book

(1)� Book should only be in the family’s first language (1)� Plastic pockets needed for holding care plans (1)� My Personal Details and Keeping me Safe (Alerts) should be

combined (1)� A separate section is needed for carers (1)� Alert Pages – purpose of these is not clear (1)� Feeding sections are repetitive (1)� Should be space to record different hospital numbers (1)� Section needed for transition from primary to secondary school (1)� A brief introduction at the beginning would be useful for professionals

explaining diagnosis, behaviour and medical history (2)� Add a diary with dates, months and days (1)� Advice for professionals on whether a child should be resuscitated (1)� A section for filing medical correspondence (1)� Not clear who the book belonged to – me or my child (1)

Many of the comments received in response to Question 11 (what additionalsection would you like to see added?) overlapped with responses receivedfrom Qu. 10, and so these responses have been combined above.

73% of parents reported that they found the book easy to use (Qu. 12):

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“It was very easy to use once I had fully completed allsections.”

“It looked daunting and took quite a while but it wasn’tdifficult.”

Of the parents who reported difficulty using the book, most of these commentsrelated to a confusing layout, which was made worse by having the Welshand English together.

“This book was easy enough to fill in but if I was a carer Iwould find it hard to read in most places i.e. things in thewrong order, bitty, confusing and too many repeatsunnecessarily.”

“…having both Welsh and English versions together madethings awkward.”

“I found that I was spending a large amount of time trying tofind the right pages….the tabs for each section could haveeach topic on the side for quicker reference.”

“The numbered sections would be easier to use if they weresubject indexed.”

Question 13 asked parents how they passed on information about their childand relayed messages. The results are summarised in Figure 3.3.

Figure 3.3. How parents pass information on about their child

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Face –to-face and telephone are by far the most popular means ofcommunication, with the home/ school book close behind. The Noticeboardsection of My Orange Book was not well used for relaying messages. Thismay have been because the book was new and so parents could not rely onstaff looking at this section, because of difficulties in finding the right section(as highlighted by Qu. 12) or because of lack of space for recording the largeamount of information that passes between school and home. Of those thatrecorded “other” for means of communication, parents stated they used:

� Taped messages via “BIG MAC” Switch� Local folder provided for this purpose� Home-made book

Question 14 asked parents where the child goes and whether My OrangeBook goes with them. The most popular use for My Orange Book was to takeit to appointments, followed by hospital, school and then short breaks. Figure3.4. illustrates the results to this question.

Figure 3.4. Where does your child take My Orange Book?

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When parents were asked if there were any other places that they took MyOrange Book to, one parent stated on holidays and outings and anotherparent stated “everywhere”. One parent stated that she didn’t take the bookanywhere because it was a pilot and so was afraid of losing it. One stated thatshe wanted to use the record for school but kept forgetting it and anotherstated that she wanted to use it for appointments but hadn’t had theopportunity during the pilot period. The most common reason given for thebook not travelling with the child was that it was not necessary as the staffknew their child well or because the child was always with the parent. Someof the other reasons given included:

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“Sometimes I find the book too bulky and heavy to carryaround. It would be better if it was thinned down and smaller.”

“Book is not structured enough at this stage and my child’smain priority is not frontal in the book. She has a behaviouralproblem and carers need to know how to manage behaviourimmediately in a calm and structured way.”

“Some of the people working with my child are not entirelyhappy with the Orange Book.”

“I take the book with me all the time but the doctor does notread it.”

“We have trialled it over the summer and my daughter has notbeen anywhere that it has been needed. However I can seehuge benefits if it had been used.”

“My child goes to respite provided by NCH. They have to usetheir own files/ records which they put together themselves.”

Question 16 asked parents whether they thought that staff took any notice ofthe information that was written in My Orange Book. 38% of parents statedthat staff did take notice and 27% of parents felt that staff took noticesometimes. 11% of parents thought that staff took no notice of theinformation written in the record. Some of the comments made by parents inrelation to this question indicated that My Orange Book had received a mixedreception from staff:

“Staff are far too busy to read from cover to cover, especiallywith other children to look after.”

“Staff are only too grateful to have additional help and supportfrom parents. Communication is essential.”

“it depends where the child is. In school or respite it was notused. But whilst in hospital it would be more useful.”

“When he was in hospital the staff on the ward read it.”

“Medical staff felt that all relevant information should havebeen together at the front.”

“Yes. The staff always read the book and they sometimeswrite in it as well.”

Overall comments indicated that the book was of more use and was betterused in the hospital setting.

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Question 17 asked parents whether communication about their child’s specialneeds had improved as a result of using My Orange Book. 56% of parentsstated that communication had stayed the same. A fairly low percentage ofparents felt that communication had improved (18%) though the reason forthis may have been that the pilot was so short. Improved communicationwould require all parties involved being aware of the existence of My OrangeBook and its intended purpose and it is clear from comments received thatthere was a low level of awareness of the pilot:

“Not enough professional medical staff know about theOrange Book.”

“Not enough people knew about the Orange Book and did notknow what it was about – more training of professionalsneeded to educate them about Orange Book.”

“I feel that the professionals who we deal with are not awareof the Orange Book, so I had to explain what it is.”

Question 18 asked parents if they would like to complete My Orange Bookelectronically, either on cd-rom or from a web site. Only 20% of parentsstated that they would like this option while 18% of parents were unsure. 56%of parents stated categorically that they would not use this facility if it wereavailable. Of those parents who did want this option, the most commonreason given was that it would make updating information easier. Of thoseparents who didn’t want this option, the most common reason given was lackof computer skills or no access to a computer.

Question 19 asked parents if they had a general comments to make about MyOrange Book. Themes that emerged from these comments are summarisedin the Table 3.1. below:

Table 3.1. General comments from parents about My Orange Book byfrequency of occurrence

TOPIC FREQUENCYThe book is too big – made worse by having English andWelsh together

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Useful for assisting staff who did not know child to betterunderstand child’s needs

6

The book needs to be re-ordered into a more logical structureand made simpler

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Useful for recording medical history and appointments –especially when a child is admitted to hospital

5

No faith that professionals would take time to read the book 4Too much duplication of information 4Too time-consuming to complete 2Not enough space to write or spare pages 2Needs to be more medically orientated 1Needs to be more focused on the child as a person 1

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Summary of child needed as an introduction 1Section needed to chart a child’s progress 1Communication section needs to be improved 1The book needs to look more colourful and child-friendly 1Section needed to explain therapy programme 1

TOPIC FREQUENCYConfidentiality concerns if book is lost 1Needs to be A4 size to accommodate letter and reports 1Confusion whether book is by the child or about the child 1

Most comments received in Question 19 were very positive. Whilstsuggestions were made for improvement (as shown in Table 3.1.) there was avery clear message that parents were very appreciative of this initiative by theWelsh Assembly Government and were eager for it to continue:

“It was very good and will be easier for a lot of people tounderstand things about my child.”

“I am the parent of a child with Autism and would highlyrecommend that every child with special needs has anOrange Book as it gives them a say in the way they like to betreated and the help they require.”

“It’s not possible to remember everything all the time whenyou are involved in 24 hour care of a child with special needs.The book is a useful tool for noting things down.”

“The book gives my child a ‘voice’ to explain valuableinformation about himself to whoever he becomes associatedwith, especially when I’m not with him to speak for him.”

“Great record of medication, and of the consultants who seeyour child. Nice to have it written clearly – it’s difficult toremember everything when you go into hospital, especially ifit’s an emergency and you’re stressed up.”

“The book needs to be more simple, easy to look through.Most hospital staff are busy and an easier book would bemore efficient – they just haven’t got time to look through alarge book.”

“In general my view is that the Orange Book is an absolutelyexcellent idea and certainly gets the thumbs up from thisparent.”

“With regard to how useful I found it – ask me if I’d give it uptomorrow and you’d have a fight on your hands!”

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4. ANALYSIS OF RESULTS OF STAFF QUESTIONNAIRES

A copy of the questionnaire that was distributed to staff for their views isappended to this report at Annexe B.

53 Staff Questionnaires were returned but 9 of these were on behalf of groupsor teams who had discussed My Orange Book. Not all of the groups statedhow many staff they represented but 3 of the groups totalled the views of 31staff. Three questionnaires were returned on behalf of organisations: Childrenin Wales, B.A.T.O.D. (teachers) and RNID Cymru. In addition, 9 letters werereceived from staff or organisations (ASBAH and NCH Cymru) and the viewsfrom those letters have been incorporated into these results. The distributionof responses from different professionals is illustrated in Figure 4.1. below:

Figure 4.1. Distribution of professional responses

Although the majority of respondents were nurses there were also responsesfrom a wide variety of other professions. Question 3 asked respondents fortheir place of work and the answers illustrated a predominant response fromthe community settings, as shown in Figure 4.2. This is not surprising sincethe majority of the care for these children takes place in the community.Responses were also received from professionals working in hospitals,hospices and schools. It would have been desirable to have a higher

0 5 10 15 20 25

Number of reponses

NurseDoctor

Care workerHealthcare manager

Health visitorUnspecified

Voluntary organisationSocial services

TherapistOther

DietitianPsychologist

TeacherDisability sports

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response rate than 6% from professionals who worked in schools and thisshould be accepted as a limiting factor in this evaluation.

Figure 4.2. Respondents’ place of work

Figure 4.3. Areas of Wales that respondents work in

0 2 4 6 8 10 12 14 16

AngleseyBlaenau Gwent

BridgendCaerphilly

CardiffCarmarthenshire

ConwyDenbighshire

FlintshireGwynedd

Merthyr TydfilMonmouthshire

Neath Port TalbotNewport

PowysRhondda Cynon Taf

SwanseaTorfaen

Vale of GlamorganWrexham

Community54%

Hospice2%

Hospital25%

School6%

Other13%

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Respondents were also asked which area of Wales they worked in and theresults are illustrated in Figure 4.3. Whilst there were a cluster of responsesfrom two areas of Wales, namely, Rhondda Cynon Taf and Methyr Tydfil,there was nevertheless a reasonable spread of responses from most otherareas of Wales.

Question 6 asked respondents whether they had seen My Orange Book inuse. 42% of respondents had seen the book in use and the remainderprovided comments following visual inspection of My Orange Book anddiscussion with colleagues.

Only 38% of respondents felt that enough information had been given to themprior to the pilot and many commented that they had received no information:

“First time that we’ve heard of the Orange Book.”

“Parents have just presented me with the book to complete inclinic. I asked them what it was all about.”

“Not enough time available so therefore we have had noinformation about Orange Book. Pilot scheme too short.”

“Needs to have more publicity after completion of the pilot.”

“We have had advance notice of the Orange Book oninformation flyers but not enough in depth publicity about thebook itself.”

Respondents were asked what they felt would be the best method ofspreading information to staff about My Orange Book. 60% of respondentsfavoured written information, 55% stated that a talk would have been a usefulmethod, 42% wanted information available on a web site, 32% wantedinformation via e-mail, 26% by video and 9% by cd-rom (some respondentsticked more than one box). Some respondents suggested a mix of methods:

“I believe all could be useful depending on the situation e.g.talk and video is good for new users and web site and e-mailgood for current users.”

“Any method of information needs to be directed from top oforganisations, cascading information down, and networking tonamed/ key people essential for appropriate informationsharing.”

These views will provide useful information for ensuring that all appropriatestaff are aware of My Orange Book prior to its final distribution.

Staff were asked in Questions 9 and 10 whether they would be prepared toassist families in updating My Orange Book if needed and whether they wouldbe prepared to read the book as part of their work role. 91% of staff stated

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that they would be prepared to assist families who needed help in completingthe book. Some stated that they would simply not have enough time with thedemands of their caseloads and others stated that they would require aninduction in use of My Orange Book before they would feel happy to do this.

“I think many families would request help initially. I would seeit as part of our role as key workers to help in this way.”

“This is part of a wider issue about who gives them out?When? As part of a wider service? E.g. Care co-ordination/key worker services.”

An equal number of respondents (91%) stated that they would be prepared toread the information in My Orange Book as part of their work role:

“Health visitors are well used to patient held records.”

“It is very important to carry out care as the child wishes andis used to.”

“It would be useful if a child was referred to our team and theOrange Book was in place and up to date.”

Only 30% of respondents had actually used My Orange Book during the pilotperiod. Of these respondents 75% found that the information in the bookincreased their knowledge of the child, 63% felt that communication with thechild’s parents had improved, 56% felt that their communication with otherorganisations about the child had improved, 50% found the calendar andweekly planner useful when arranging appointments to see the child and 50%found the Noticeboard section useful for relaying messages to families.

Overall, 91% of all respondents felt that My Orange Book was an effectiveand efficient method of improving the co-ordination and care of children,however, many cautioned that this would be dependent upon the book beingkept up to date:

“A good means of communicating relevant information todifferent agencies. It would need to be updated regularly tobe truly useful.”

“An essential, long-awaited form of communication and co-ordination.”

“I think this depends on how well the book is completed. It isquite an onerous task for a parent to complete a book, and anumber of parents would find it difficult.”

“We feel it should be and could be but we don’t know yet.Issue is updating information, needs to be a regular andcontinuous task.”

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Question 13 asked respondents how easy they found it to refer to differentsections of My Orange Book. Only 8% of respondents said that they found itdifficult to refer to the sections they wanted in the book. 40% of respondentsstated that there were pages in the book that they would like to see improved,and the following comments were received:

� Section added for the blind/ visually impaired child (3)� Section added for special equipment used (1)� Coloured pages for different sections (2)� Section added for therapy programmes (1)� Order needs changing – personal details first, then communication,

medical details and keeping safe (2)� Bigger Noticeboard section (1)� Introductory section with photograph at beginning of book (1)� Don’t include medication dose or it could be used as a prescription (1)� Centile charts would be useful (1)� Personal details as a section on its own (2)� Home, family and friends expanded (1)� Section on pain recognition assessment and how to treat (1)� Weekly routine section added to School (1)� Appointments to be placed with weekly routine and calendar (1)� Expand communication section to include symbols, PECS etc. (4)� Put Friends and Family near personal details (2)� Calendar for appointments is too small (1)� Language needs to be more child and parent friendly (1)� More room needed in many sections (3)� Epilepsy – this section should include use of buccal midazolam and not

enough space to describe what to do in case of multipe seizures (1)� Section on seating/ postural needs and pictures of how to fit splints (1)� Add age appropriate sections for likes, dislikes and hobbies (1)� Section needed on types of educational activities done at school (1)� Expand school section to make appropriate for secondary schools also

(1)

Respondents were asked in Question 15 what additional sections they wouldlike to see added. These responses overlapped with Question 14 and sohave been included in the list above.

Guidance notes were issued with My Orange Book for both staff and parents.Respondents were asked whether the guidance notes needed to beimproved. Comments received on guidance notes for parents included:

“Need to be available in other languages and larger print.”

“Didn’t see guidance notes. Not enough information given toorganisations prior to pilot scheme.”

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“These are already clear and comprehensive – do not thinkany changes required.”

“Guidance is straightforward and brief, which is welcome!”

“They are clear to understand if the parent has no literacydifficulties.”

“Perhaps the text could be presented in shorter paragraphs orbullet points.”

Comments received from respondents on the guidance notes forprofessionals included:

“The guidance notes are fine, although I feel more informativesessions would also be helpful initially.”

“Very clear and good that clear instructions given as to how totailor the book and what information to give to parents. Donot think any changes required.”

“Something about where additional pages are available from,advice to organisations about additional information (localneeded).”

Question 18 asked respondents whether it would be useful for parents to beable to complete My Orange Book electronically. Only 34% of respondentsthought that this would be useful and 43% were unsure. Comments receivedfrom respondents included concerns that if this were offered it should be asan additional option as many parents do not have computers. There werealso concerns that the paper would not print out in the right size for the books.

Question 19 asked respondents if they had any general comments to makeon My Orange Book. Themes that emerged from these comments aresummarised in Table 4.1.

Table 4.1. General Comments on My Orange Book by frequency ofoccurrence

TOPIC FREQUENCYGood method of communicating child’s individual needs toall agencies involved

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Length of document may be daunting for some parents 6Pilot scheme was too short for parents to try out fully 4A4 sized is preferable to A5 so care-plans could be filed 4Distribution and use of the book needs to be monitoredand its use evaluated

4

Book needs to be regularly updated if it is to be useful andthis will be difficult for busy parents

3

There needs to be clear accountability for distribution of 3

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the book and support for familiesTraining sessions are required for staff who will besupporting parents in use of the book

3

TOPIC FREQUENCYWelsh and English should be in separate books 3There is confusion about whether it is the child’s book or abook for parents about their child

2

Not child friendly 2Many parents have poor literacy skills and would need alot of support to complete this

2

Additional pages for the book need to be easy to access 2More publicity and awareness raising needed about thebook among professionals

2

An extra section in the Red Book instead of this would beless stigmatising

2

Professionals won’t have time to read this in the timeallowed for a consultation

1

Order of contents needs reviewing – personal details first 1Looks complicated at first glance which may put parentsoff

1

The book is too bulky to carry around 1A5 size is good but this doesn’t leave a lot of room to write 1Additional section needed for education and space to fileeducational statement

1

Additional section needed to emphasise positive skills 1Where will on-going funding for this come from?Supporting parents is time-consuming and extraresources are needed.

1

Professionals will also benefit from the information in thisbook

1

WAGSEN should consider a similar book to look ateducational progress

1

Very user friendly and appealing to youngsters 1Some organisations have their own profiles which familieswill still have to complete

1

Needs a section on last wishes of a dying child 1

There was a mixed response from staff about use of My Orange Bookalthough there were more positive than negative comments:

“ The book I feel is an excellent idea and will greatly improvethe child’s care. Once it has been established it will be anexcellent resource for all agencies and carers alike. The maindifficulty I foresee is that most of the carers/ parents in myarea will need a lot of support in completing the book...whichwill take all agencies involved with the family to worktogether."

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“Generally an excellent resource. However, I do feel thatfamilies caring for a child with complex needs would not havethe time or energy to complete it. However, a professionalcompleting it on their behalf would learn an awful lot aboutthat child.”

“All our parents allocated to take part in the study were verykeen and positive, but have struggled to complete the bookfully due to time constraints – especially as the children offschool also!”

“I first saw My Orange Book in use for a child who is a regularvisitor to the hospital and I felt I knew the child and the parent/carer well. I was surprised at how much information I couldlearn about the child from My Orange Book. I feel it’s a usefultool for us nurses when children may be brought to hospital byteachers/ social workers etc. when a parent is not immediatelyavailable.”

“I thought the ‘Keeping me Safe’ section was very good andallows, at a glance, for people unfamiliar to the child tounderstand situations, for example things which particularlyupset a child with Autism such as crowded and noisysituations.”

“ Clearly this is a major and contentious issue but I wouldsuggest that all documents are offered in both languages.Then allowing the family to select their own choice ofdocuments to include and the language for each would allowthem to construct the dossier that they find most helpful andthat they can be sure will facilitate communication with theirschool, doctor, social worker etc.”

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5. RESPONSES FROM VOLUNTARY ORGANISATIONS

RNID Cymru who represent deaf and hard of hearing people in Wales alsoreturned comments on My Orange Book. They welcomed the initiative but didnot feel that it was appropriate for deaf children who do not have additionaldisabilities. Of the 40% of deaf children who have additional disabilities it wasfelt that My Orange Book may not be relevant for them as they may notrequire shared care. RNID Cymru are involved in a multi-agency study toassess early support pilot programme (ESPP) materials, including a FamilyToolkit which they feel is more suited to the needs of the majority of deafchildren than My Orange Book.

British Association of Teachers of the Deaf (BATOD) representing over100 members in Wales stated that My Orange Book was a very good idea forchildren with complex medical needs. It felt that the book could be furtherdeveloped into a record of educational progress for children who were notworking at National Curriculum Levels. It was suggested that WAGSENshould consider development of a similar book to look at the child’seducational record. BATOD questioned whether profoundly deaf pupils wouldneed My Orange Book.

Children in Wales welcomed the development of My Orange Book whichthey felt was a positive step forward to encourage interagency working andcommunication. It was felt to be unfortunate however that the book onlyreferred to the child’s health and social but not educational needs. It was feltthat this might lead to poor communication and working relationships betweeneducation and the other agencies. They recommended expansion of theeducation section to overcome this problem.

NCH Cymru stated that the book was an excellent concept that would saveparents endless repetition of information. They felt however that the bookwas not in a child-friendly format and was more of a parent’s book about thechild. Concerns were expressed about confidentiality if the book gets lost andwhether the medication page could be dangerous if not kept up to date.Advice was given on re-organising the sections in the book and that maybe itwas trying to achieve too much in one book.

Association for Spina Bifida and Hydrocephalus (ASBAH) felt that MyOrange Book was a good idea but were concerned that it was too big andbulky. Confidentiality was another concern if the book was lost. It was feltthat providing My Orange Book on cd-rom or web-site would overcome someconcerns about children losing the book and the information falling into thewrong hands. They also expressed a concern about safety if medical advicein the book was followed but was out of date. Overall, ASBAH felt that thebook would be well used by motivated parents.

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Contact a Family conducted focus groups with parents on the use of MyOrange Book, and their report is appended to this evaluation (Annexe C).

6. DISCUSSION

Response Rate

There was a good response rate from staff with a satisfactory spread ofgeographical locations and professional groups, though the majority ofrespondents were nurses. Only 6% of the questionnaires returned came fromschools and this should be accepted as a limitation of the evaluation in view ofthe amount of time that children spend in school. 53 questionnaires werereturned from staff but as many of the responses were in relation to groups,this translated into the views of far more.

The response rate from parents/ carers at 38% was lower than was hoped butwas very similar to the response rate achieved by Exeter University when theycarried out a similar survey of parents views on the use of the Orange Book inCornwall Partnerships NHS trust. A low response is also unsurprising whenone considers that parents’ time is fully occupied when they have children tocare for with complex needs, added to the fact that the latter half of this pilotfell into the school summer holidays.

One disappointing feature of the study was the low return of questionnairesfrom North Wales despite a significant percentage of the pilot sample comingfrom that area. Due to reorganisation of services in one of the North Walespilot areas it had been necessary to send copies of My Orange Book out bypost and this was no doubt a factor which had influenced the low return ofquestionnaires. In all other areas parents were introduced to My OrangeBook by a member of staff who was known to them, they were talked throughthe contents and provided with support throughout the pilot period. Thisfinding has important implications for the final dissemination of My OrangeBook.

Piloting all Sections of My Orange Book

Almost all section of My Orange Book were used during the pilot period bychildren who participated in the study. The only section which was not triedout was the section on diabetes, and only two young people in the pilot werein receipt of transition services and so one would have to question whetherthis section was adequately tested.

General Findings

A high percentage of both staff (91%) and parent/ carers (82%) felt that theprinciple of My Orange Book was good, that it would improve the co-ordination and quality of care that disabled children with complex needs would

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receive. This was a much higher percentage than parents/ carers in the focusgroups conducted by Contact a Family (two thirds). The reasons for this aregiven in their report i.e. that parents from a children’s centre who participatedfeel so supported by the excellent service that they are receiving that they donot feel the need for this book. It may also be that parents appreciate thevalue of My Orange Book more after they have had a chance to use it. Whilstthere was an overwhelming positive response to My Orange Book, there werenevertheless a number of areas where it was felt there was room forimprovement. It is difficult to know how to deal with many of these comments,as often, completely opposing views were received. It will be impossible todevelop a record which is going to serve the needs of all disabled childrenwith complex needs and their families, the goal therefore must be to make thebook suit the needs of as many as possible. Revisions to My Orange Bookwill not be able to take account of every comment received, but where thesame comments have been received more than once then every effort will bemade to use these in the revisions.

There were some common themes which emerged from comments received.In particular, it was felt that the ordering of sections in the book wasconfusing, the book was too long, complex and not child-friendly enough.Ensuring that My Orange Book was child friendly would be particularlychallenging as the book had to be suitable for children and young people frombirth to adulthood. It is difficult to encapsulate the needs of such a wide agerange in one book, however it was evident from comments received that thelanguage needed to be made simpler and less formal. Many commented thatthe pilot was too short and that as a result some parents had not had theopportunity to try the book out in short breaks (respite) or with hospitalappointments. There were a few comments (mostly professional) about theneed for the folder to be A4 size. The reasons given for this was so thatmedical reports, letters and care plans could be filed in the book. When thefinal version is published it will be accompanied by an A4 lever arch file forkeeping this documentation, as well as used pages from My Orange Book.As the pilot only lasted for 3 months then it was not felt to be necessary forsuch a short period of time. It is also more desirable for medical reports andother confidential information to be filed elsewhere as it is intended that thechild takes My Orange Book with them wherever they go. This may alsoassist in alleviating some of the confidentiality concerns which arose in someof the comments.

Training Implications

An issue that arose repeatedly was that few professionals were aware of MyOrange Book before seeing it for the first time in use. A strong messagecoming through from the evaluation was that success would depend upon allstaff who came into contact with children being aware of My Orange Book andhow it should be used, and that staff who would be expected to supportparents in its use receive adequate training.

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“Any method of information [with regard to training] should bedirected from the top of organisations, cascading informationdown, and networking to named/ key people essential forappropriate information sharing.” (Quote from a hospital doctor in pilot questionnaire)“The main difficulty that I foresee is that most of thecarers/parents in my area will need a lot of support incompleting the book and this will need plenty of support andencouragement which will take all agencies that work with afamily to work together. Therefore I feel that multi-agencymeetings would need to be arranged so that all have a goodunderstanding.”

(Quote from a special needs school nurse in pilotquestionnaire)

“I feel that some professionals will require more informationregarding the purpose and use of the Orange Book prior togeneral circulation.” (Quote from a healthcare manager in pilot questionnaire)

Likewise it was felt to be equally important that parents are adequately trainedin use of My Orange Book and are provided with adequate support if neededto complete the book and keep it updated. It was interesting to note thatmany parents felt that staff would be too busy to read My Orange Book andthat many staff felt that parents would be too busy to complete the book. Thisis may be a misconception on both sides, for although this would no doubt betrue in some cases, the comments received would indicate a high level ofcommitment by both parents and staff to use the book well.

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Needs of Children with Specific Medical Conditions

A number of staff and parents commented that the book was inadequatelydeveloped to meet the needs of the visually impaired child and that thissection would therefore need to be developed. Comments were also receivedthat the book would not meet the needs of the profoundly deaf child. Therewas however no indication that a new section was needed here, but ratherthat it was not required. The deciding factor about whether My Orange Bookwould be of use or not to a child did not however depend upon the presenceof a specific condition or impairment, but rather it was the presence ofcomplex needs that was the deciding factor. This led to a question aboutwhether My Orange Book was attempting to achieve too much in one book inthat it described a child’s care needs but also medical needs and in manycases went into a lot of specific detail about particular conditions e.g. epilepsy,diabetes etc. No book could adequately cover all possible conditions or itwould end up looking like a medical compendium and the child as a personwould be lost amongst it all.

One possible solution to this problem could be to take forward a suggestionmade by a couple of respondents by including as one of the very first pages abrief introduction to the child that describes the main problems the child hasand refers the reader to relevant sections of the book for more detailedinformation. This page could also include essential alerts about action to takein an emergency. The first page of the book would therefore contain the reallyimportant information that anyone who was unfamiliar with the child couldgrasp almost as soon as they open the book. The more ‘medical’ pages inrelation to specific conditions e.g. use of nebuliser, oxygen therapy, diabetesetc. could be generalised into almost blank pages which were headed“medical conditions” or something similar. This would allow the parent to writea description of the child’s medical condition and how to deal with it (starting anew headed page for each condition). Keeping these pages generalisedwould overcome the problem of not all conditions being covered in the booke.g. visual impairment, and would make it seem less complicated andfrightening for parents. This would result in significant simplification of thebook which many parents and professionals have asked for.

Welsh Language Act Compliance

Another strong theme which emerged from the evaluation was that thebilingual presentation of back-to-back Welsh/ English was confusing for bothparents and professionals. This was reinforced by the consultation carried outwith parents by Contact a Family. Separate Welsh and English versions werecalled for.

“I have found a bi-lingual book cumbersome. Also, I wouldrather have my copy solely in English, the language used bymy family, my child and my child’s carers and professionals.Having a book in one language will make it easier to navigate

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for myself. Obviously for the Welsh speakers a bi-lingualbook should be used.” (Parent quote from pilot questionnaire)

“Book far too heavy and awkward to carry along with othernecessary luggage. Twice the size it needs to be. I do notwant the Welsh version but cannot take the Welsh pages outso the book is more heavy than it needs to be.” (Parent quote from pilot questionnaire)

“Separate Welsh and English versions would improve layoutas the booklet is too bulky as it is.” (Quote from a Diana Nurse who completed questionnaire)

It was evident from comments received that another means of presenting MyOrange Book bilingually was required. The results of this pilot were discussedwith the Welsh Language Board, the National Assembly Welsh Language Unitand the NHS Welsh Language Unit. An alternative presentation was agreedwhich it was felt would meet the needs of parents and staff better as well ascomplying with the Welsh Language Act. The final version of My OrangeBook would have a bilingual folder and dividers. The text however would beprovided separately in Welsh and English (shrink wrapped). Parents couldchoose to use the English text or Welsh text, or both if they preferred. Anyunwanted text would be returned to the professional to distribute to anotherfamily as required.

The main disadvantage of this method is that the professional who presentsthe book to the family will need to insert the correct pages between the correctdividers and so would take some extra time. However, this could be done atthe same time as removing any sections which were not required by the childand so may not actually involve a great deal of extra work.

Founding Principles of My Orange Book

One of the more unexpected findings of the evaluation is a confusion aboutthe purpose of My Orange Book. The record was written in the first person,through the eyes of the child, but in places lapses into the views of the parentabout their child.

“I found the book ambiguous in that sometimes I filled it in asif I were my son and sometimes just simply writing about him.” (Parent quote from pilot questionnaire)

Uncertainty about whether this was a parent’s book or a child’s book was acommon theme that emerged from the pilot and from the focus groups heldwith parents by Contact a Family. The young people from Jigsaw who

30

commented on the book had clearly drawn the conclusion from looking at itthat it was a child/ young person’s book that hadn’t achieved its objective well,as it was considered to have language that was not child friendly and was notappealing for young people to look at.

Another common theme which emerged was that the record was trying to dotoo many things at once, resulting in confusion about whether this was meantto be a medical record, a personal care record or a record about the child as aperson.

“I am strongly committed to the concept of a parents’handbook for families of children with special needs….I haveconcerns that the Orange Book in the words of one father is“too much, too complicated”…It may become another thingwe ask parents to do, it must support them and bemeaningful, not another pressure.” (Quote from a health visitor who completed a questionnaire)

To resolve this confusion it is necessary to return to the reasons fordeveloping the record in the first place. Parents requested a hand-heldrecord so that they didn’t have to keep repeating the same informationtime after time to different professionals and also to improve the co-ordination of care for their child. This is the founding principle of MyOrange Book. It is therefore a parent’s record about their child. It was notdesigned to be a child’s book but was written from the perspective of the child,in the first person, to assist different professionals and carers in seeing theworld through the eyes of the child and so gaining a better understanding oftheir needs.

Although this is a parent’s record it is anticipated that as the child grows into ayoung person that they may take ownership of the book if they are able tocomplete it. The comments of the young people from Jigsaw are thereforeimportant to address if young people are to feel comfortable using the record.

The issues of the book attempting to do too many things at once can also beaddressed by returning to the founding principles of this record. If the recordis to improve the co-ordination of care for the child and also to save parentsfrom having to repeat the same information time after time then it needs tocontain medical information, care information and information about the childas a person. Different parts of the record will be more important in differentsituations e.g. information required by hospital staff to effectively care for achild during an emergency admission may be different to information that isimportant for carers during short breaks. Simplifying the book and re-orderingthe contents, as suggested in earlier sections of the evaluation, will hopefullylessen this confusion over the book seeming to attempt to do too many thingsin one record.

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7. RECOMMENDATIONS

These recommendations are based on the evaluation of the pilot, focusgroups held with parents carried out by Contact a Family Wales, consultationcarried out with young people from Jigsaw and general comments receivedfrom individual professionals, professional and voluntary organisations,parents and carers. These recommendations will be used to revise MyOrange Book prior to it being offered to families that meet the criteria beforethe end of March 2005.

1. The language of the record should be simplified as far as possible and allsections should be written consistently in the first person. A section at thefront of the record should explain why it has been written this way andemphasise that it is a record for parents.

2. There should be a summary section at the front of the book to explain thechild’s main problems and referring readers to other relevant sections formore detail. This summary should be merged with the alerts section.

3. The ordering of sections should be changed with personal and medicaldetails (which are more likely to be needed first in an emergency) placedat the front of the book following the summary/ alert section.

4. The record should be made less prescriptive with many of the sectionsthat presently focus on specific medical conditions changed to moregeneralised pages for free-text descriptions in which parents can writeabout their child’s problems and how they should be managed. Sparecontinuation pages should be made freely available.

5. The cover and dividers should be produced bilingually whilst the textshould be produced separately in Welsh and English. Both languageversions should be offered to parents at the same time and they mayaccept one or both as they wish.

6. Following the findings of focus groups held with parents by Contact aFamily (pages 7 and 16) it is not recommended that My Orange Book ismade available in any language other than English or Welsh.

7. Sections which describe the child’s likes and dislikes, what they are like asa person and their strengths should be expanded.

8. The pilot highlighted that the guidance notes (produced separately) canget separated from the record. It is therefore recommended that ashortened version of the guidance notes (for both professionals andparents) is included in the record.

9. The final record should look more lively and colourful than the presentrecord. Adding extra colour increases production costs but it shouldnevertheless be possible to introduce a four-colour process to the cover

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and dividers instead of the two-colour process currently used. Disabledchildren and young people who participated in the pilot were invited tosubmit art work to a competition held during the pilot period. Winningentries will be used on the dividers and this should brighten up theappearance of the record and make it more personal to children in Wales.

10. The dividers should be laminated to make them more durable and tabsshould be rounded and identified not just by numbers. The folder itselfshould have a popper or Velcro fastening to ensure that pages do not fallout if the file is dropped.

11. A structured initial training and awareness programme should bedeveloped and cascaded to all areas of Wales by the end of March 2005.Two training programmes are being considered, one for professionals whowill be offering My Orange Book to parents and supporting them in its use,and a less detailed programme for professionals who are likely to comeinto contact with My Orange Book during the course of their work. TheWelsh Assembly Government will issue a Welsh Health Circular early in2005 detailing how this initial training will take place and where futureresponsibility will lie.

12. The Welsh Assembly Government should ensure that a review is carriedout on the use and effectiveness of My Orange Book within 2 years of theinitial distribution of the record.

The Welsh Assembly Government issued a Welsh Health Circular[WHC(2004)085] in December 2004 with guidance in relation to thedistribution and effective use of My Orange Book.