My Orange BookParent Focus Groups

July 2004

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Executive Summary

Introduction and Methodology

The Welsh Assembly Government invited Contact a Family Wales to holda series of focus groups with parents of disabled children with complexneeds on “My Orange Book”.

Focus group sessions were held across Wales and a concerted effort wasmade to ensure that considerations of geographical location, cultural andlinguistic background, children’s ages and needs were taken into account.In addition, areas where the task and finish group had piloted thedocument were deliberately avoided.

Contact a Family would like to thank all those who helped organise andtook part in focus group sessions.

Is there a need for a hand held record for disabled children andyoung people with complex needs? Does “My Orange book” meetthis need?

� We met with approximately 40 parents, of whom about two thirdsthought that there is definitely a need for a hand held record fordisabled children and young people with complex needs. Theremaining third disagreed.

� Most of those who agreed that there was a need for a hand heldrecord welcomed “My Orange Book” in its current format.

� A small group agreed that there was a need for a hand held recordbut either did not think that “My Orange Book”, in its current format,met their needs or felt that the venture would fail unless there was asustained programme of publicity and education of professionals toensure its take up.

Practical issues and the design of “My Orange Book”

� Parents were keen to comment on the design of “My Orange Book”and their primary concerns were focused on the physical strengthof the folder, its size and weight and whether it would stand up tosubstantial wear and tear.

� It was considered important that the design of the book appeals tochildren and young people alike and that the book was clear andeasy to use by both professionals and parents.

� When commenting on the clarity of the document, a large numberof parents raised the issue of the way in which the pages had been

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printed, with English on one side and Welsh on the other. This wasconsidered to be both confusing and unclear.

Parents’ comments on the contents of my “Orange Book”

� Parents wanted a universal record, but also wanted it to be flexibleenough to meet their child’s specific needs. Therefore certainsections may need to be expanded or added or subtracted.

� The second category of comments was that of specific suggestionsfor topics which parents felt had been omitted. Examples includedspecific points on the child’s bedtime and mealtime routines.

Parents’ concerns about using “My Orange Book”

Parents voiced three main concerns with the development of “My OrangeBook”.

� The first of these major concerns was that professionals will not useit.

� Secondly, it was considered crucial that there is an administrativestructure capable of supporting the use of “My Orange Book” on anational scale.

� The third concern was that if children will actually be carrying theircopy of “My Orange Book” around with them on a day to day basisthe confidential information contained in the book may fall into thewrong hands and also, that possession of the document maystigmatise the user.

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INTRODUCTION

Contact a Family Wales was asked by the Welsh Assembly Governmentto conduct a series of focus groups across Wales with the parents ofdisabled children with complex needs on “My Orange Book”.

METHODOLOGY

Copies of “My Orange Book”, the notes for parents and carers andevaluation forms were distributed to the members of each parent group atleast one week before their focus group session. Where parents wereunable to attend group meetings, feedback was also accepted via thetelephone. Because parents were only provided with photocopies of “MyOrange Book”, they were given the opportunity at group meetings toexamine and handle one of the prototype books to ensure that theyunderstood how it was anticipated that the finished product would look.

The aim was to make the focus groups as wide ranging as possible, takinginto account considerations of geographical location, cultural and linguisticbackground and children’s ages and needs. Areas where members of theTask and Finish group established by the Welsh Assembly Government totake forward the development of “My Orange Book” had piloted the recordwere deliberately avoided. Wherever possible, focus groups were tied intomeetings of existing groups. However, where it was not possible to linkwith a pre-existing parent forum, parents were invited to a speciallyconvened meeting. A full list of the groups is given below. In total, wespoke to 40 parents as well as 7 professionals, the latter attending focusgroup sessions in supporting roles.

Data from the focus groups was compiled and analysed to form the basisof this report which reflects the key concerns of the parents. A wide rangeof topics and themes were discussed, but for the purposes of this reportthey have been divided into four main chapters. Parents’ views andcomments are printed in quotation marks. Where they have beenincluded, professional comments are shown in quotation marks and adifferent font.

Contact a Family would like to thank all the parents and staff who took partin this exercise for their comments and contributions. In particular, wewould like to thank the organisers of the various groups for their help inorganising and facilitating at meetings and distributing paperwork.

This report was compiled by Martin Davies.

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The Parent Groups

Groups were purposely selected to reflect as broad a range of experienceas possible, taking into account the age range of the children and youngpeople represented as well as linguistic and cultural issues.

CountyBorough Group Description

CardiffABCD

(Access for Black Childrenwith Disabilities)

Various conditions

Mixed age range

Caerphilly Caerphilly Children’sCentre - Drop in GroupVarious conditions

Age 2-5 years

CaerphillyCaerphilly Children’sCentre - Parent and

Toddler Group

Various conditions

Birth – 2 years

Ceredigion Parent and Carer’s Forum(Action for Involvement)Various conditions

Mixed age range

Gwynedd Carers’ Outreach ServiceVarious conditions

Mixed age range

PembrokeshireSIGA

(Special Interest Group forAutism)

Children on the autisticspectrum

Mixed age range

PembrokeshireParents’ TLC

(Parents’ Tender LovingCare)

Children with terminalillness or life limiting

conditions

Mixed age range

Powys Parent and Carers’ Forum(Action for Involvement)Various conditions

Mixed age range

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Chapter One

Is there a need for a hand held record for disabled children andyoung people with complex needs? Does “My Orange book” meetthis need?

The opinions of parents varied greatly. Some welcomed the concept of ahand held record.

“This is a brilliant idea, much needed”.

Others were less convinced of its value.

“Is this just something else we are going to have to fill in?”

However, although there were those who disagreed with the concept of“My Orange Book”, it must be made clear that by far the greatest numberof parents were in favour and viewed its advent positively and withenthusiasm.

The parents with whom we spoke fell into three broad groups on thisissue. Firstly, there were those who welcomed the development of a handheld record for disabled children and young people with complex needsand who felt that the concept of “My Orange Book” answered that need,making suggestions for only minor modification to its design and contents.Secondly, there were those parents who felt that there was a need for ahand held record, but that “My Orange Book” required more substantialmodification and a clearer focus for use. Within this group have beenincluded parents who feel that the venture will succeed, providing it hasadequate publicity and professional backing both at a strategic and anoperational level. The final group was made up of those who felt that theparents of disabled children would be better supported by some othermeans, in particular, the development of children’s centres throughoutWales. Several of this latter group were resigned to the fact thatprofessionals would not use the book and gave this as the reason whythere should be an alternative.

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The concept of “My Orange Book” was particularly welcomed by thosewith school age and older children who have both medical needs andcommunication difficulties. Parent’s were able to list large numbers ofprofessionals who provide care for their children and stressed thedifficulties of ensuring that all involved are kept up to date.

“I find it very difficult to remember who I have given (my child)’sdetails to as we see so many professionals in four differenthospitals. This would help to cut down on this worry”.

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The same parent described the problems she had faced when her childstarted school.

“When a child has complex needs, before they start school,the parent is in charge of everything and arrangeseverything. Once the child starts school, other people arearranging things and the parent becomes scared that theywill miss something or not tell someone something vital –“My Orange Book” will be a really important tool forcommunication between parents and all professionals”.

The problem of keeping so many professionals informed was furtherexacerbated by frequent changes in staffing. One parent felt that it is “abrilliant idea in terms of continuity”. The idea was particularly welcomedby one mother with a disabled child with complex needs whose husband’scareer necessitates that the family relocates every couple of years. Whendiscussing the need for a hand held record, another mother simply pointedout.

“My son had a nasty accident because somebody did notunderstand that he needed impact mats around his bed”.

The need for a hand held record like “My Orange Book” is perhaps bestillustrated by the fact that several of the parents we met reported they hadmade up their own versions and it was confirmed that a number oforganisations around Wales have developed similar personalportfolios/family held records. However, previous versions had beenconfined to use within a particular locality or organisation/sector e.g. hometo school, short break etc. and this was the first time that they hadencountered an attempt to develop a family held record for multi agencyuse on anything like a national scale.

“My Orange Book” was warmly received by two families we spoke towhere one or more parents spoke neither English nor Welsh. Through aninterpreter, one mother told of how she had taken her child to hospital andhad waited for what seemed like hours. When a member of staff came tospeak to her and it became apparent that she could not speak English, afurther long wait ensued. She valued the idea of “My Orange Book”, not asa means of avoiding repeating her child’s history, but as a tool forcommunicating with hospital staff where an interpreter is not available.

“When you don’t understand the language, the person feelsparalysed and helpless. This will certainly help”

Many of the parents who greeted “My Orange Book” with enthusiasmmade practical suggestions for the improvement of its design and contentsand these are discussed in depth in later chapters.

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The second broad group of parents generally welcomed the introduction ofa hand held record but expressed reservations about the content andfocus of “My Orange Book”.

The parent of a child with autism stated that they felt that the book is toomedical and does not concentrate enough on the child as an individual.

“The most important thing is for the book to highlight the childas an individual, not the “disability”. It should therefore containmore information about a child’s whole life, not just medicalinformation. It should be a personal record”.

“I didn’t like the book and didn’t bother to start to use it. Toobulky, unclear and didn’t give me enough space for what I feltwas important e.g. behaviour strategies, my child’spersonality”.

It was felt that the “All About Me Book” which had been developed locally,is a far more child centred document and is far more appropriate to theneeds of autistic children.

The opinion was expressed that “My Orange Book” is trying to be allthings to all men. It was conceded that whilst the book may be ideal fordisabled children with complex medical needs, it was not as suitable forchildren on the autistic spectrum. It was also felt that it needed to bedecided who the book was aimed at, whether it was about the parents’need to record and share information, whether it was a personal record forthe child/young person, or whether indeed it was a professional document.

“far too “professional” orientated, but not for parents andchildren”.

I think that a book should be family owned to make it work –it doesn’t feel like that - I certainly had no enthusiasm tocomplete it.”

The same parent went on to say “I feel another book should run alongsidethis, purely devoted to the child!” whilst a professional attending the samemeeting felt that if the purpose of the book was for parents to shareinformation with professionals, that the use of the first person was notappropriate.

“The use of the first person cameacross as patronising – it should notbe “me” and “I”.”

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This professional also questioned the language used which, she pointedout, came across as formal and wondered if children and young peoplehad been consulted.Those who attended this focus group agreed that before the book isintroduced it should be clarified exactly what its purpose is, whether it isabout the parents’ need to share information with professionals or whetherit is about the child as a person. They felt it could not be both and thatclear guidance was required on how it is going to be used.

A major dilemma would be how to make the contents of the booksufficiently general to be used by all disabled children with complex needswhilst at the same time specific enough to cover their individual careneeds. “There are lots of good points, but it’strying to be too many things to too manypeople” was one professional view.

Parents also expressed concerns that without adequate professionalcommitment, “My Orange Book” would be unlikely to succeed and parents’efforts in keeping their child’s books up to date would be wasted. It shouldnot be inferred that parents did not welcome the concept of “My OrangeBook”. They were generally enthusiastic about the idea of a hand heldrecord but warned that if there was insufficient professional commitment atan operational and strategic level the venture would fail.

Their reluctance to embrace the concept wholeheartedly was often theresult of bitter experience. These parents had witnessed the introductionof hand held records and felt that it had fallen by the wayside because of alack of enthusiasm and support. Several parents reported that they did notuse their copies of “The Red Book” and that the professionals theyaccessed did not ask for it anyway.

“Professionals would need to be educated to use it and whatto do with it when they are presented with it by a parent. InGwynedd, many professionals do not bother to fill in the “BlueFile”

The reasons why parents thought that professionals would not use “MyOrange Book” are discussed in depth in chapter four.

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Finally, the third broad group of parents disagreed with the concept of ahand held record and the development of “My Orange Book”

Two parent groups were accessed at Caerphilly Children’s Centre andboth of these groups felt that the centre, together with their care co-ordinators provided them with all the support they required. “My OrangeBook” was superfluous to their needs. Parents felt that money spent onthe development of “My Orange Book” would be better spent on buildingcentres, like Caerphilly, in other locations across Wales.

“We would like to see the folder scrapped and more centresbuilt”.

It was, however, agreed that “this would be a Godsend when you’ve gotnothing, but a care co-ordinator and access to a children’s centre is thebest solution”.

Those attending the “Parent and Toddler Group” in particular did not relishthe thought of having something else to keep up to date

“I’ve got three diaries on the go and this would just be anotherthing to fill in”.

This group, all parents of young children, expressed reluctance at thethought of having to carry around another record when they are alreadyusing the “Red Book”.

“It seems that hospitals cannot communicate properly, I amalways carrying around pieces of paper, why should I carryaround all the information on my child?”

This was particularly resented as it was felt that professionals would takeno notice of “My Orange Book” and promptly ask parents to relate theirchild’s history. These parents felt that their needs would have been betterserved by the inclusion of a laminated sheet listing the child’s therapists’details in the “Red Book” as well as a list of useful organisations andservices.

“What parents do need is a list of all useful organisations andservices”

One parent felt that the book would lead to her son being judged byprofessionals.

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“I’ve had contradictory information about whether or not to tellpeople about my child’s condition. The consultant judged himas a potential criminal before he was born. Everybody has anopinion including teaching assistants and I don’t want them tojudge my son”

A further issue which was raised by the parent of a very young childwhose condition had not yet been diagnosed was that she did not feelemotionally ready to use “My Orange Book” and would have consideredbeing issued with it as the final blow. It was pointed out that many parentsgo through a period of denial and need time to come to terms with theimplications of their child’s disability. It was felt that the issue of “MyOrange Book” to a parent at this stage could prove counterproductive.

As the members of the two groups we accessed at Caerphilly Children’sCentre were all parents of children under five years of age, it was admittedby some attending that their dislike of the book may have been possiblyattributable to the age of their children. Several felt that young childrendevelop too quickly to warrant the completion of the document, i.e. assoon as they had completed it, it would be out of date.

“It may be useful for older children, but not younger children”

Several parents felt that the real solution to the problem of repeatinginformation lay in the form of an integrated computer record for each childwhich all professionals could utilise, perhaps on presentation of a smartcard to prevent unauthorised access. “A very low tech solution in a hightech age” was how one parent viewed it.

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Is there a need for a hand held record for disabled children andyoung people with complex needs? Does “My Orange book” meetthis need?

In summary, if the decision to proceed with the development anddistribution of “My Orange Book” were to be based on parental opiniononly, it must be made clear that at least half of the parents we met withagreed that there is definitely a need for a hand held record and that thedocument, in its current format, with only minor alterations, will meet thisneed. These parents welcomed “My Orange Book” and viewed it as theanswer to several problems they regularly encounter:-

� It will prevent them having to repeat their child’s history for everyprofessional they encounter (particularly welcome in cases wherethere are frequent changes of personnel) and worrying that theyhave remembered to include every detail.

� It will ensure that professionals have access to vital details relatingto a child’s care when that child is away from home (in hospital or inrespite care, for example)

� It will serve as a valuable tool for communication (particularly wherethe parent speaks neither English nor Welsh).

There were those (about one third of the total number of parents we met,all the parents of children under five who also enjoyed the supportprovided by Caerphilly Children’s Centre) who fundamentally disagreedwith the introduction of a hand held record and who generally thought thattime, money and effort expended in the development of “My Orange Book”would be better spent in other ways.

The remainder of the parents we spoke to agreed that there is a need for ahand held record, but either did not see that the book, at least in its currentformat, as the answer or anticipated problems unless the venture receivesadequate backing.

Their key concerns were:-

� Whether “My Orange Book” currently tries to be”all things to all men”and needs to have a more focussed remit.

� The difficulty of getting something “universal” and relevant to all,whilst also being specific enough to address the individual needs ofall children

� Will it receive sufficient professional backing to allow it to succeed?

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Chapter Two

Practical issues and the design of “My Orange Book”

Parents’ comments on the design of “My Orange Book” (as opposed to theconcept and contents) were very varied, but focused on three main issues.

The first issue was practicality with comments centred on the strength andportability of the prototype book. Secondly, parents commented onwhether the design of the book will be popular with children and youngpeople. The final theme concerned the importance of the book being userfriendly. It was thought to be vital that the design makes it as easy aspossible for parents to complete and does not discourage professionalsfrom reading it.

One of the major concerns for parents is that the book/folder is robust.Both parents and professionals have pointed out that “The Red Book” isdesigned for use over a five year period, but seldom seems to last pastthe second year without falling apart. It was pointed out that “My OrangeBook” will potentially have to last much longer and, if it is to be carriedaround by the children and young people themselves and used by a largenumber of professionals, it will be of paramount importance that it iscapable of lasting the distance. Several parents thought that laminateddividers (perhaps in bright colours for clarity) would be a good idea whilstanother felt that all pages should be slotted into polythene wallets. It wasalso felt by some that the “Keeping Me Safe” section should also belaminated.

The A5 format of the book was welcomed by those who were concernedabout the extra weight that they or their children would be carrying around.This was particularly an issue with the parents of very young children whoalready carry around the usual nappies, feeding bottles etc, as well astheir copy of “The Red Book”. These parents pointed out the advantagesof having a document with a soft cover, which can be folded to fit inside abag.

Those parents who are in favour of the concept of “My Orange Book” weregenerally pleased to see that it has been designed as a hard back looseleaf binder with sections inserted or removed as necessary. A commonconcern was that pages would come loose and be lost and it was felt thatreinforcement may be necessary e.g. strengthening the holes andmanufacturing dividers from strong plastic.

“Pages will fall out, pages aren’t numbered, would not know ifpages are missing”

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A further suggestion was that the child’s name and identifying details (theirNHS number for example) should be included on each page and that thefolder should be held closed with a simple popper or Velcro fastener.

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The second issue was whether the appearance of the book would appealto children and young people and parents’ comments on the appearanceof the book tended to centre on how “child friendly” they felt it to be.

After receiving only photocopies of the contents pages, parents weregenerally pleasantly surprised by the design and appearance of “MyOrange Book”. However, there were some comments on the colour. Onemother said that it reminded her of an old fashioned disabled car stickerwhilst it was also pointed out that some children are colour sensitive andhaving to use a bright orange book may prove problematic for them

The idea of having children’s drawings to separate the sections also gaverise to several comments.

“We liked the pictures at the beginning of each chapter!”

Others felt that older children and young people may find the pictureschildish

In addition, the fact that “My Orange Book” can be personalised was wellreceived and felt to be more in tune with older children. Several groupsthought that the inclusion of a space for the child’s photograph on the frontcover would be a good idea which would help to help to identify the ownerof a particular book, so long as the design allowed for the photograph tobe changed as the child grows. One parent pointed out that the addition ofa popper or Velcro fastener, as mentioned above, would make the bookresemble a “filofax” but others felt that possession of such a vivid objectwould stigmatise older disabled children, particularly if they attendedmainstream school.

In our meetings with parents, a concern which occurred again and again(see chapter 4) was that the book would be lost. It was suggested that, asa design adaptation (together with a popper or Velcro to fasten the book) afreepost address should be included on the cover so that the finder of alost book could be given instruction to put it in the nearest post box toreturn it.

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The third category of comments was centred on the user-friendliness ofthe book, for both parents and professionals. As a tool for communication,it was considered vital that the book is clear and as easy to use aspossible.

Finding the relevant section, particularly in an emergency situation, wasthought essential. Several parents therefore spoke out in favour of havingthe sections in the same order and having the “Keeping me safe” detailsas the first section.

“………..I imagine, when regularly in use by all children, staffwould quickly know where to find the sections required.”

Another idea was that each section should be illustrated by an easilyrecognised sign or symbol such as a bed for the bedtime and a knife andfork for mealtimes. One parent suggested that sections which will need tobe accessed quickly (those dealing with emergency situations or topicssuch as toileting), should be distinguished by having more prominentdividers, slightly larger than the rest and perhaps in a different colour.

It was questioned whether all professionals would require access to all theinformation and, indeed, whether they would be put off using it by thesheer size of the book. On several occasions, it was suggested that pagescontaining certain details, the “Keeping me safe” section, for example,should be easily copied and removable (and perhaps also laminated), sothat they could be used by drivers or workers taking children on trips andoutings who would not need access to all details. Similarly, one mother(whose child had suffered a painful accident as a result of hospital staffnot understanding his needs) felt that certain laminated sections from thebook could be displayed near the child’s cot or bed when away fromhome.

Several groups felt that the way in which the Welsh language has beenincorporated within the design will impinge on its clarity and ease of useand so, this subject has been included, as well as comments made byparents for whom neither English nor Welsh is their first language.

The issue of language came up again and again in our discussions withparents. The current format with English on one page and Welsh on thereverse side was not popular and the majority of parent groups thought itconfusing.

“The user should be able to pick either English or Welsh. Thebi-lingual version is too confusing and makes it harder tocommunicate”

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“The bi-lingual format is confusing. It should be in English orWelsh, not both”

A concerted effort was made to consult with Welsh speaking parents andto obtain their views on the issue of language. These parents pointed outthat whilst the family may be Welsh speaking it is likely that they wouldaccess certain services staffed by Welsh speakers (teachers for example),but, there would be professionals, even in predominantly Welsh speakingareas, who spoke only English.

“If the book was completed in Welsh, there would be doctors,even in Gwynedd who would not be able to understand Welsh”

Potential difficulties were also highlighted where children access servicesoutside Wales (especially in North Wales where children are frequentlyreferred to Alder Hey Hospital, Liverpool).

“If the document was completed in Welsh, there would beparticular problems when children access healthcare servicesoutside Wales”

Various solutions were suggested, including the completion in bothlanguages and completion of certain sections in English (for Englishspeaking professionals) and Welsh (for Welsh speaking professionals).

“Relevant sections could be completed bilingually – but thiswould add to the parents’ workload”.

Interestingly, as has already been pointed out in Chapter One, the familieswe met with where the first language is neither English or Welsh and oneor more parents speaks little or no English, did not request that “MyOrange Book” be translated into their language. They viewed it primarilyas a tool which could be used in the absence of an interpreter tocommunicate with hospital staff. One mother was particularly anxious toconvey the peace of mind the prospect of having “My Orange Book” wouldprovide.

“I feel ease and relief about “My Orange Book”

Similarly, a father who usually interprets for his wife explained howrelieved he was that if his son needed to go into hospital and he was notable to be there, his wife could at least provide medical staff with relevantdetails by simply handing over “My Orange Book”. The concern for thesefamilies is to have someone to fill in the book on their behalves.

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Linguistic issues aside, parents were keen that the document should be assimple and easy to use as possible. Although some parents werespeaking from their own point of view (“too wordy, too bulky and would bea nightmare to keep up to date”) others were concerned that an overcomplicated document would discourage other parents and professionalsfrom using it.

“I feel this could be an excellent improvement if theprofessionals become familiar with it. e.g. they can find quicklythe relevant information they require.”

Some felt that the solution (as discussed in the previous chapter) lay in thesharpening of the focus of the document i.e. deciding whether it wasorientated towards professionals or the family (and within this issue,whether it is directed at the parents or the child), whilst others felt that thesize of the document was justified.

However, it was pointed out that families should be supported in using thebook to ensure equity of use for all disabled children.

“It is a vast amount of information, rightly so, and I think that someparents would be daunted by this and would need support and helpfrom someone to fill it in and keep it up to date. This would probablyput pressure on the key worker and work time should be calculatedfor this to make the system efficient for all children”

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Practical issues and the design of “My Orange Book”

Those parents who expressed opinions on the design of “My OrangeBook” were generally those who were in favour of the introduction of ahand held record for disabled children and young people with complexneeds. The major concern was that the book should last the distance andbe easy to use. Their suggestions were generally constructive and focusedon how the book will work in practice.

Comments on the design of “My Orange Book” can be summarized asfollows.

� The design should be robust enough to survive many years of useby parents and professionals as well as being able to survive beingcarried around by the children themselves, without either disgorgingits contents or tearing apart. The book should be small and lightenough to be carried around by parents and children alike.

� The book must appeal to children and young people, but, morefundamentally, it should first be decided whether the book really isabout the child or whether its purpose is to satisfy the needs ofparents and professionals to share and access information.

� Finally, users should be able to access the relevant sections aseasily as possible. The contents should be clearly laid out andlinguistic considerations should not be allowed to impinge on theclarity of the document. The document may need to be simplified inorder to allow parents to use it and some parents may still need tobe supported in their use of “My Orange Book”.

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Chapter 3

Parents’ comments on the contents of my “Orange Book”

In addition to making comments on the design of “My Orange Book”,parents also took time to read through the contents of the document,comment on the various sections and suggest improvements. Parents’comments on the contents of the book fell into two categories. Firstly,parents commented on the subjects already covered by the book, therange of issues and the amount of space allotted for various topics andthe emphasis of the book. The second category was more specificsuggestions for individual items which they felt had been omitted fromparticular sections. Both of these reflected the problem of how to make thedocument general enough to be universal whilst at the same time makingit sufficiently detailed to cover the individual care needs of all disabledchildren and young people with complex needs.

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A potential problem is the space allotted for various subjects. The natureand focus of these comments varied from parent to parent, being largelydependant on their child’s particular needs. This was certainly highlightedby the potentially contradictory comments received from individual parentswho each focused on their child’s needs.

“There should be a longer section on medical details whichshould be right at the front of the book. In many cases this isthe most important thing”

“The medical information is thorough, but not good for learningdisabilities. The section could have more space for situationswhere the medication is complicated or for where there arechallenging situations”

In many cases, where a child’s needs are greatest in a particular situation,parent’s found that there was insufficient room to include full details. Insituations where insufficient space had been allocated for a particularsubject was felt to be a selection of blank pages which could be insertedat the end of each section where the parent felt that further informationwas necessary. However, one parent, referring to the calendar sectionpointed out “my child has at least one appointment per day, this calendaris not sufficient”

Those who agreed that there was a need for a hand held record but feltthat the current focus of “My Orange Book” is wrong (as discussed inChapter One), made specific comments on the nature of the contents. Inparticular, the mother of a child with autism felt that the emphasis of thebook was too medical and, did not allow for her to communicate the thingsshe felt important such as behaviour patterns and challenging situations.

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“The focus is very medical, it does not give a picture of thechild as a whole”

“The alert page at the front of the book – it is not clear whatthe headings are and what they are meant to cover. This isclearer if the child has a specific condition such as epilepsy,but it is not so easy to specify for behavioural issues.”

This parent would have liked to have seen more sections focused on thechild’s personality than on their condition and asked for more space fordetails of leisure and play, the child’s likes and dislikes, where they like togo and what they like to do. It was also suggested that the book containsdetails of “what people like about me”.

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The second group of suggestions were also prompted by parents who didnot see their child’s needs reflected in the contents of “My Orange Book”.What distinguishes these comments is that they relate to specific itemswhich the parents felt had been omitted.

One specific comment was that the wording of the “Keeping me safe”section should be amended to read “I need someone with me in thefollowing situations……”. Another parent felt that it would be helpful toinclude contact telephone numbers for the hospitals the child normallyattends in case they are admitted to a strange hospital in an emergency.

A further suggestion to make the book more personal was the inclusion ofa “Newstime” section via which the child can communicate details of theirrecent activities and it was also felt that the scope of the “Noticeboard”could be extended to include messages from professional to professional.

Several parents commented on the inclusion of medical details within thefolder. At least one parent felt that it was too risky to allow children tocarry around confidential medical details and that they should not beincluded. Another felt that this chapter, the medicines section in particularshould include room for the parent to give the date on which it was lastfilled in, to show that it is up to date. Yet another parent felt that moreroom should be allocated for details of how medicines are taken (e.g.suppositories or orally, from a spoon or syringe, tablet or liquid etc)

The mother we met whose son had suffered a painful accident becausehospital staff did not understand that he needed impact mats to be placedaround his bed naturally thought that this was worthy of inclusion in thesection on bedtime routine, along with details of whether the bed or cotsides should be raised or lowered. She also suggested that this section be

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made more specific to include details of the child’s specific bedtimeroutine e.g. whether the child has the lights dimmed before they go tosleep.

It was also suggested that the section on eating and drinking included asimilar level of detail e.g. whether the child is left or right handed to allowfor the correct placing of eating and drinking utensils.

Whilst discussing the subject of “My Orange Book” with a professionalworking with black and ethnic minority families, it was pointed out that thebook takes no account of dietary requirements which may be the result ofa child’s religion or culture.

Another professional comment was on the subject of immunisations. The“Red Book” contains details of immunisations up to age five only. TB andrubella immunisations are given after this point and, if a child is about togo into respite care, details are always requested. It was felt that thisinformation could be included in “My Orange Book”.

Finally, several parents pointed out that their children use PECS tocommunicate and that this should be added to the list of sign languages inthe section entitled “Communicating with me”.

Parents’ comments on the contents of my “Orange Book”

Parents’ comments on the contents of “My Orange Book” were inevitablyinfluenced by their child’s specific needs. This reflected the difficulty ofhaving a universal record whilst including sufficient detail for individualneeds.

However, suggestions can be divided into two categories.

� Those parents who felt that the book does not place sufficientemphasis on what they perceived as their child’s needs (e.g. thatthe book is too medical for use by children with autism) and thoseparents whose children have greatest need in one specific areamade comments on the nature and range of the contents andspace allocated for particular subjects.

� Those parents who were generally content with “My Orange Book”as it stands but felt that specific, useful items had been omittedfrom particular sections.

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Chapter 4

Parents’ concerns about the use of “My Orange Book”

In our meetings with parents, there were three common concerns whichwere raised again and again. The first of these was whether professionalswould actually use the book, the second was that there would be asufficiently robust administrative structure to ensure that “My OrangeBook” succeeds and lastly concerns relating to confidentiality as the booktravels around with the child.

As we have seen, all parents were worried, to some extent, that theventure will fail if it is not supported by professionals and backed at a morestrategic level by local authorities, local health boards, NHS trusts andother statutory and voluntary organisations. The comments we receivedon this issue revealed that the major concern of many parents was that“My Orange Book” will prove to be successful.

“Parents are anxious that the idea does not fail. It will need agood launch and the backing of both parents andprofessionals to make it work”

“There needs to be a pro-active approach from professionalsto get it up and running”

Indeed, some parents, who felt the idea of “My Orange Book” to be awaste of time, were resigned to the fact that it will fail.

“It would be good for situations like respite care, but doctorsand consultants won’t abide by it”

Parents pointed to several initiatives which they felt had fallen by thewayside, simply because professionals did not use them. The “blue file”,used in Gwynedd has already been mentioned. In Caerphilly, parents tolda similar story with care co-ordination forms.

“We filled out huge care co-ordination forms and the doctorsstill ask us for our child’s details”

Parents wanted to know how the initiative would be backed up andwhether they would be able to demand that a professional uses their copyof “My Orange Book”.

“Is there going to be a statutory obligation that professionalswill have to use them if a parent asks them to?”

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The reasons why parents thought that professionals would not use “MyOrange Book” varied. The comments already included in this chapterillustrate that parents are concerned that professionals should haveknowledge of the advent of “My Orange Book” and should be instructed inhow to use it. However, parents also attributed a potential lack of “buy in”on the part of professionals to other factors.

“Doctors seem to be afraid that they will make an error and willstill ask the parents all about the child’s history anyway”

Fundamental to parents’ concerns was the fear that professionals wouldnot use the book because they personally did not trust the information itcontained (that it could be out of date for example) or that they would misssomething and this would result in mistakes. The fear of information beingout of date prompted one parent to suggest that a “date last up-dated” boxcould be added to pages such as those on medical information.

Several parents thought that professionals would not have time to use thebook.

“Doctors need time set aside to read reports. Very often theconsultant will have a very detailed report on his desk, will askthe parent for details and will then say “ah yes, it’s here”. It isnot the doctor’s fault that they do not read these thingsbecause they do not have the time”

There was also the concern that the book will simply be another documentwhich parents have to keep up to date in addition to the multiplicity offorms they already complete because various organisations will not bewilling or able to use it to replace existing documentation.

“Every service and institution has its own informationrequirements – would they take notice of the book or wouldparents end up filling in the book and then having to completethe forms as well.”

This was borne out by a comment we received from a professional whoattended one of the meetings.

“As a service provider, we ask that wehave a profile form for each childwhich is up to date and completed by aclose family member or a key worker whoknows the child well………..The idea ofhaving a hand-held record which travelswith the child is a positive andcreative one though I am aware that we

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could not expect this to replace theforms we need.”

Parents were also keen to know exactly who would take on ownership ofthe project on a local basis and who would ensure that professionals knowabout the venture.

“Who is going to take on the education of the professionals? Who willhave ownership of the project? Is there going to be a publicitycampaign to alert professionals to “My Orange Book”?”

~~~~~~~~~

The second category of concern was based on the question of how thecontinued use of “My Orange Book” would be supported administratively.

Several parents asked how they would obtain copies of “My Orange Book”and this led to a discussion on the more fundamental issue of how theirchildren would qualify for receipt.

“Will it be open access for parents or will there be a decisionmaking process before parents get one?”

Several parents challenged the definition of complex needs as being thosechildren who access two or more services above those universallyaccessed by all children. This parent felt that whilst the child may beaccessing only one service above those universally accessed by allchildren, the issues around that one service may be so great that a copyof “My Orange Book” would be warranted. This was backed up by aprofessional who attended one of the sessions.

“Who will offer “My Orange Book” toparents – where do parents get themfrom (autism may not be seen as complexby certain definitions but thechildren/young people still haveconsiderable needs)”.

At the same session, a professional expressed a fear that possession of acopy of “My Orange Book” could become a qualification to accessservices.

“The use of the book by parents shouldbe voluntary and should not be

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compulsory, the ticket for access toservices.”

They also wanted to know who would distribute the book and at whatpoint.

“It will be important to make it clear exactly who distributes thebook and when”

Parents were also concerned that their efforts to keep the book up to datemay be thwarted by an inability to obtain replacement pages. It waspointed out that children and their needs and routines can change rapidly(this is very much the case with younger children who can change fromone week to the next) and this would result in a commensurate need forpages in “My Orange Book” to be amended or replaced.

It was felt that if they had to rely on obtaining pages from a relevantprofessional, there may be delays and it was suggested that a contacttelephone number via which parents could obtain replacement pagesdirectly would be a solution to this problem.

It was pointed out that some parents will not be able to complete the bookthemselves and that it will be necessary to ensure that there is sufficientsupport to help parents fill in the appropriate sections.

“It may be useful to have someone coming out to parents tohelp them fill it in”

~~~~~~~~~

Lastly, a particularly widespread cause of concern for parents is the factthat children using “My Orange Book” will be carrying around a largeamount of confidential information. There was the worry that the bookwould be lost and a replacement would have to be obtained, but therewere also deeper concerns.

“If parents and children are carrying around information, thereis a real danger that it may be lost. At best, this will mean thatthe parent will have to fill in the information again, at worst,confidential information could fall into the wrong hands”

That confidential information should fall into the wrong hands was a majorconcern for a high number of the parents we met and it was repeated,over and over again.

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“What would happen if the book got lost? There is a realdanger that confidential information could fall into the hands ofthe wrong people”

Some parents felt that carrying around such a clearly visible symbol ofcomplex needs could be stigmatising and gave rise to fears of bullying.

“A child in mainstream school using one of these books wouldbe singled out and it could encourage bullying”.

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Parents’ concerns about the use of “My Orange Book”

The fact that the majority of parents welcomed “My Orange Book” as theanswer to a hitherto unmet need did not prevent them from havingconcerns. Many parents shared the same concerns about its use. In mostcases, it was not that they were averse to the concept (indeed, many ofthose who commented on these issues were strongly in favour of thedevelopment), it was often simply a question that they wanted it to succeedbut needed reassurance that action would be taken to deal with theproblems they anticipated.

Parents, concerns with the use of “My Orange Book” can be summed upas follows.

� The book will need backing at a strategic level. The launch of thebook will need to be backed up by a sizeable publicity campaign toensure that all professionals know of its existence and also knowwhat to do with it. At an operational level, if the venture is tosucceed, it will also require the “buy-in” and back up of both parentsand professionals.

� An efficient and robust administrative system will be needed tosupport the whole venture. Potential issues surrounding thequalification for obtaining a copy of the book will need clarificationand parents must be able to access replacement pages quickly andeasily if the books are to be kept up to date. Some parents will needto be supported in their use of the book and will also need helpcompleting it.

� Issues about children and young people carrying around highlyconfidential information will need to be addressed, as will the fearthat possession of a copy of “My Orange Book” will be potentiallystigmatising.

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Conclusion

Although it has not been possible to draw a single conclusion from ourfocus group sessions, it must be pointed out that by far the greaterpercentage of parents were genuinely positive about “My Orange Book”.Parents did have reservations, but they were mainly about content, howthe book will work in practice and how its use will be supported asopposed to whether a hand held record is needed. It is worth noting thatparents who were not in favour of the concept of a hand held record werethose who were already well supported by other means (a specialisedchildren’s centre), who would rather that other parents should share theirgood fortune by having access to similar facilities. Even so, it wasremarked that in the absence of children’s centres, “My Orange Book”would be useful.