Table of Contents

Programme ...................................................................................................................4

Participants...................................................................................................................5

Presentations ...............................................................................................................7

Child Health Information Development Project – an overview.................................................... 7

Examples of Findings from the Six Child Health Indicators ............................................................ 8 1. Chronic Disability – the potential for measuring handicap (now participation) ........................................................8 2. Acute Morbidity – the effect of using an appropriate case definition .......................................................................9 3. Growth and Development – the importance of gestational age when interpreting birthweight .............................10 4. Exposure to Health Risks – the picture changes when you have reliable trend data............................................11 5. Vulnerable Children (Teenage Pregnancy) – the need for local service provision data........................................12 6. Vulnerable Children (Quality Protects) – the little we know of this small group of children at high health risk .....13

Objectives Today.......................................................................................................................... 14

The National Context .................................................................................................................... 15

National Picture. Poverty and Children 1996................................................................................ 15

National Strategies for Children and Young People ..................................................................... 15

National Health Inequality Targets ............................................................................................... 16

Child Poverty Index ...................................................................................................................... 16

Key Issues.................................................................................................................................... 16

Information Sharing ...................................................................................................................... 16

Further Work by the Public Health Observatory ........................................................................... 17

Information, a Children’s Health Asset – Producing and Using Information for Children with Disabilities ..................................................................................................................................... 18

Information Needs ........................................................................................................................ 18

Seeing Information as an asset .................................................................................................... 18

Designing Information .................................................................................................................. 18

Introducing the AMASE Project .................................................................................................... 18

Policy and Practice Framework.................................................................................................... 19

Children’s Services....................................................................................................................... 19

Disabled Children and Parents..................................................................................................... 19

How do you make information an asset to Child Health? ............................................................. 19

Workshops..................................................................................................................21

Severe Injuries............................................................................................................................... 21

Group Discussion. ........................................................................................................................ 21

Wish List....................................................................................................................................... 23

Action ........................................................................................................................................... 24

Low Birthweight ............................................................................................................................ 25

Group Discussion ......................................................................................................................... 25

Wish List....................................................................................................................................... 25

Action ........................................................................................................................................... 26

Cerebral Palsy ............................................................................................................................... 27

Group Discussion ......................................................................................................................... 27

Wish List....................................................................................................................................... 28

Action ........................................................................................................................................... 28 Locally ........................................................................................................................................................................28 Nationally ...................................................................................................................................................................28

Synthesis Discussion ................................................................................................29

3

Programme

09:30 Coffee and Registration

10:00 Welcome and Introduction

Professor Steve Jarvis

10:05 Child Health Information Development Project – an overview

Professor Steve Jarvis

10:20 The National Context

Dr Tricia Cresswell

10:45 Coffee

11:00 Workshops

12:00 Lunch

13:00 Information, a Children's Health Asset - Producing and Using Information for Children with Disabilities

Dr Bridgette Wessels

13:20 Workshops

14:30 Tea

14:45 - 15:45 Synthesis discussion

Dr Tricia Cresswell

4

Participants

Sam Cramond Deputy head of

Denise Huscroft HAZ transitions planning

Libby Harper Health information analyst

Tricia Cresswell N&Y Public Health Observatory

Helen McElroy Health Information Dev Officer

Sheila Hogarth Operations Manager, N Tyneside

Liz Towner University of Newcastle

Geraldine Hayes Social worker

Charlotte Clarke Professor of Nursing

Monique L’hussier Research Associate, University of Northumbria

Mel Hall Specialist Nurse, LAC

Jane Salotti Data manager

Louise Parker Reader in epidemiology

Carol Burdis Researcher

Louise Blakebrough HAZ LAC Coordinator

Steve Ruffell Accident Prevention Coordinator

Sheila Hardy Senior Midwife

Era Saharia Consultant Paediatrician

Kate Lambert A&E Senior Registrar

Peter Jones A&E Specialist

Guy Kirk Children’s Services Manager

John Phillipson Head of Children’s Services, N Tyneside

Christopher Benjamin Consultant Paediatrician

Sharon Jones Surestart Midwife, West Newcastle

Chris Dunn Head of Midwifery, Gateshead

Pat Glass Head of SEN, Sunderland LEA

Alan Fenton Consultant Neonatologist

Angela King Senior Lecturer

Eileen Dunn Principal Officer, Family Services, S Tyneside

Grace Wali Child Accident Prevention Coordinator

Steve Fletcher Services Manager, Sunderland MBC

David Eltringham Director, Tyne & Wear HAZ

Neil Halford Consultant A&E, Newcastle General Hospital

Susan Warlock Whoops Child Safety Centre

Nigel Brewster Consultant Paediatrician

Mike Coombes CURDS, University of Newcastle

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Angela O’Brien Midwife

Jane Lothian Public Health Registrar

Alun Davies Health Education Adviser, Gateshead MBC

Lucy Wheatley* Children’s Services, Durham HA

Mary Gibson Consultant Paediatrician

Bridgette Wessels School of Management, University of Newcastle

Geoff Lawson Consultant Paediatrician

Hilary Ellam Joint Planning Officer

Steve Jarvis Community Child Health, University of Newcastle

Lilian Simpson Community Child Health, University of Newcastle

Marjorie Holbrough Community Child Health, University of Newcastle

Brenda Welsh Community Child Health, University of Newcastle

* Representing Ian Tucker

6

Presentations

Child Health Information Development Project – an overview

Professor Steve Jarvis

3-year project funded by Tyne & Wear Health Action Zone (HAZ) to improve the usefulness, accessibility, and range of

information on children’s health.

Method – Review of local data on six exemplar indicators, followed by consultation and piloting of option(s).

Child Health Data already

available

Service Providers and Users who need data to do their job

GAP

Enhancement

Interpretation

Access

New data needed

7

Examples of Findings from the Six Child Health Indicators

1. Chronic Disability – the potential for measuring handicap (now participation)

The Participation (LAQ) Dimensions Physical independence - assistance received, eg eating a bowl of cereal ♦

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Mobility - eg proportion of rooms in house that they can access

Clinical burden – eg no doctors’ appointments in the last year

Schooling - type of school and distance from the child’s home

Economic burden - Financial cost to family not covered by benefits

Social integration - eg number of friends child saw in the last week

Profile of average participation scores of children with cerebral palsy in Sunderland (n=26) and Newcastle (n=28)

0

2

4

6

8

10

PI M CB S EB SI

Sunderland

Newcastle

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2. Acute Morbidity – the effect of using an appropriate case definition

Changes in Rates of Severe Injury Over Time

Tyne & Wear Hospital Admissions for "Serious" Injury 0 to 19 year olds

(1991 pop = 276,313)

0

50

100

150

200

250

300

350

400

450

1981 1983 1985 1987 1989 1991 1993 1995 1997

Rat

es p

er 1

00,0

00

Any injury(LOS >3days)Fractures(MAIS >2)

Fractures(MAIS >2,LOS >3)

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3. Growth and Development – the importance of gestational age when interpreting birthweight

Percentage of live born babies with poor foetal growth (< -1 SDS birthweight for gestational age)

0%

5%

10%

15%

20%

25%

1982

1984

1986

1988

1990

1992

1994

1996

1998

2000

GatesheadS TynesideSunderland

Percentage of live born babies born prematurely (ie before 37weeks gestational age)

0%

2%

4%

6%

8%

10%

12%

1982

1984

1986

1988

1990

1992

1994

1996

1998

2000

GatesheadS TynesideSunderland

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4. Exposure to Health Risks – the picture changes when you have reliable trend data

Smoking in Secondary Schoolchildren

% of regular smokers in Sunderland HRBQ surveys

8

10

25

31

11

9

24

36

26

38

6

12

27

37

13

9

0

5

10

15

20

25

30

35

40

12 13 14 15 Age

% s

mok

ers

1994199619982000

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5. Vulnerable Children (Teenage Pregnancy) – the need for local service provision data

Teenage conception rates per 1000 females age 15-17yrs in Tyne and Wear

Services in Tyne and Wear

Gateshead N Tyneside S Tyneside Newcastle Sunderland

Pop. 15 to 17 year olds

(1995)* 6,895 6,959 5,555 8,698 11,300

Conception rate in 1997** 52.4 56.8 58.4 58.9 65.5

Number of clinics*** 6 14 6 11 8

Number of clinics for young

people**** 2 6 4 4 2

N° opening hours / week***** 19hr 58hr 24hr 46 hr 32hr

N° opening hours after 4pm /

week 7hr(1.0)****** 16hr(2.3) 13hr(2.3) 33hr(3.8) 13hr(1.2)

N° of services opened on

week ends 1 0 1 2 1

*Population estimated from the 1991 census. **Conceptions per 1000 girls aged 15-17. ***Total number of places providing contraception services and advice, as given by ‘ruthinking’ website. ****Number of clinics dedicated to young people, included in the total number of clinics. *****Total number of hours per week when family planning services are available in the area. ******Hrs per week per 1000 15-17 yr olds.

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6. Vulnerable Children (Quality Protects) – the little we know of this small group of children at high health risk

Health indicators for children looked after in Tyne and Wear 1999.

0

10

20

30

40

50

60

70

80

90

100

Immunisationcompleted

Dental checks Annual HealthAssessment

Comprehensivehealth

assessment

NCL

SND

GTD

NTY

STY

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Objectives Today

Consultation using 3 exemplar issues ♦ ♦

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Define generic improvements required in child health information and possible immediate pilot work

Some possible options:

In depth further development of an exemplar (eg characteristics of a disability-friendly city)

Develop specification for new data content/methodology (eg omnibus Internet survey of secondary schoolchildren)

Describe improved information service (eg data exchange protocols, interpretation/research facility, interrogation

access)

Finally

Please do not spend a lot of time dissecting the exemplar reports

Please do focus on extracting general messages about how you would like to see child health information developed

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The National Context Dr Tricia Cresswell

What is required across the NHS to meet needs? ♦

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Why do we need information?

Investigate causes of ill health.

To monitor the health of the population.

To develop policy strategies and plan services.

National Picture. Poverty and Children 1996

1 in 6 children were poor.

1 in 3 are poor now

More than 2 .5 million children in workless households

2,500 young people sleep rough

58,000 children are ‘Looked After’

Under 18 conception rate 46 (per 1,000 women aged 15-17)

Infant mortality rate 5.8 (per 1,000 live births)

National Strategies for Children and Young People

Sure Start Young People substance misuse plans

Education Standards NHS Plan

Children’s Fund Teenage Pregnancy Strategy

Connexions National Healthy Schools Programme

SEN Programme of Action Learning Disability Strategy

Quality Protects Forthcoming National Service Framework

Children who leave school without qualifications will live 10 years less than other children.

There is a group of highly vulnerable children who don’t access services.

Poor data re drugs.

National Service Framework for Children’s Health and Social Care has strong links with Education.

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National Health Inequality Targets

Starting with children under 1 year by 2010 to reduce by at least 10% the gap in mortality between manual groups

and population as a whole.

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Starting with HA by 2010 to reduce by at least 10% the gap between the quintile areas with the lowest life expectancy

at birth and the population as a whole.

Child Poverty Index

Is a subset of the index of multiple deprivation (IMD) which shows proportion of children living in households which

claim means tested benefits.

Percentage of children receiving free school meals. Best measure of relative poverty – really useful baseline

indicators. Tyne & Wear has large numbers of children eligible for free school meals.

Percentage of 15-year-old pupils achieving no passes at GCSE’s. Does not mirror the general picture. Sunderland

seems to do proportionately well at education despite disproportionate levels of poverty.

Conception rates for girls under 18 for Health Authorities in the North East 1996-1998. Small numbers of events –

may be chance – confidence intervals – need to show whether by chance or by incident.

Infant Mortality. Need to check confidence intervals.

Key Issues

Population Boundaries. Changing boundaries of population by changes in NHS, now producing it by LA boundaries.

Therefore not comparing like with like over time. Children with one particular problem, difficult to make comparisons.

Denominators. Need to know rates not just numbers. Cannot compare areas unless denominators are clear.

Sometimes denominators are not clear eg Low birthweight – need to understand the problems with the data.

Definitions. What are we counting eg Cerebral Palsy – are we counting when children are diagnosed by GP or

another factor? How do you define children with disability?

Confidentiality. Difficulties around data collection and confidentiality.

Information Sharing

Legal Framework and Professionals duty. Need to break down barriers between Health, Social Services and

Education. Need to store information.

Between agencies. Organisational Culture. Trust. Will there be bills to pay for services eg CP police intelligence v

information.

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Further Work by the Public Health Observatory

Review of Perinatal and Infant Health Information ♦

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Child Health Information – Children with Disability

Links to National Service Framework. Feedback from conference used to feedback nationally.

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Information, a Children’s Health Asset – Producing and Using Information for Children with Disabilities Dr Bridgette Wessels

Information Needs

In the planning process - Information is a critical stumbling block in planning. ♦

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In the practice of service delivery - We need to know what is available in Community Services.

In use by parents – 1 point of access to information, to be able to understand.

Seeing Information as an asset

What is information?

How can we make it useful – what is wanted – how can we disseminate it?

Understanding information is the dynamics of current service provision and user needs.

Trying to understand what other information services have.

‘Information needs to be dynamic’.

How can agencies come together to plan in a more coherent way?

Designing Information

For Planning

For Practice

For Parents Use

Gaps in planning practice – lack of information – people using own sources.

Sign Posting Guide. This is seen as a first step in producing information for parents with a disabled child.

Most Important – Joint Working and Partnership – research about what other areas had produced.

Ensures parents are involved in the early stage.

Would give basic information and suggest where they could get more information.

Feeling let down is a barrier to participation.

Workshops on how to get workers to use the guide as a tool.

Awareness of what the information is designed and used for – some people expect more from it

Introducing the AMASE Project

Addressing the joining up of services in the Public Sector

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Children’s services in Newcastle ♦

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Addressing organizational technological and informational issues.

What information might mean and how do you produce it so it is useful.

Policy and Practice Framework

Joining up – moving away from State run – different types of contract. Fragmentation of welfare – many experiences

of this by both service users and professionals. Partnership instigates.

Choices. Informed consumer of services. Empower people to say this is what we want.

Children’s Services

Planning. Change in Child Care – involved planning groups – multi-agency, around needs of different groups.

Practice. All professionals have different ways of understanding needs.

Access to services

Disabled Children and Parents

Needs. How do we understand the needs of disabled children?

Move from a medical model to social definition – stresses complex social aspects of disability – not just impairment

but social needs.

Push for Inclusion and Participation.

Specialist support – education, family, social implications.

Services fragmented – parents feel it is time consuming and a conspiracy to get information and services.

From service providers points of view realise they are fragmented – need information – but what sort?

Need to link information with what developments are already there.

How do you make information an asset to Child Health?

Try to be clear about use – who needs it, what is it for?

Issues about dissemination

Social Networks

Information must be appropriate and relevant

The Sign Posting Guide is on part of the NHS Direct website.

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Workshops

Severe Injuries

Group Discussion.

To provide data which is ‘meaningful’. No data available at present. Useful starting point could be using files at

National Level. This is a priority. How to justify work when there is no information available. Co-ordinated approach

and working together.

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Find out what local Practitioners need – minimum data sets collected across Local Authority.

Need to turn research into practice.

Definition. What is Severe Injury? Causes may be the same but outcomes different.

Background and context of injury required to help to target prevention.

National Injury Task Force. Need for more surveillance.

Crossing boundaries between different stakeholders.

Wish for an interface between Accident and Emergency and Secondary Care eg Health Visitors and School Nurses.

Access to Health and Education Data in a ‘real time’ format in order to pinpoint and target potential problem areas,

and for some method of moving data quickly to deal with specific problems.

A whole systems pilot for child protection, operational services, ambulatory care and Looked After Children, so that

information can be more widely used in a Public Health dimension. How would the information be shared in a wider

context and people informed about what we know about severe injuries?

Look at figures that reflect what is happening during school curriculum time and also specify activities during leisure

time,

‘After – event ‘ data on factors such as housing, school, social deprivation, to show ‘hot spots’ (in relation to Local

Authorities).

Qualitative information necessary in all areas.

Co–ordination of agencies. Data is different for each agency. Data for groups that might want to be used – to

change culture in area of work.

GP data not collected. Length of stay in hospital meaningless. Children may go to GP instead of hospital. Could

miss large number of injuries by concentrating on hospital information. Do you want to prevent most serious or most

frequent injury?

Need to prevent all injury. Could be trivial injury one day but child could die the next day. Characteristics of most

serious injury are the same as a pool of whole range of injuries – has this been proven or do we need to look into

this?

Need flavour of information but need to humanise numbers.

Need to engage more providers and data to be more interesting on order to talk to them and make an impact.

Prioritise responsibilities and commitments of different agencies. Different professions with power and status.

Need to look at school days lost through injury to link facts eg Children 16 not achieving GCSE’s live 10 years less.

Inform more people of the facts. Media need to find it interesting enough to report the data. Often only want victim to

sensationalise.

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Break down cost – how much does it cost per road traffic accident – need local costs – impact of smoking on house

fires.

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Context – more detailed circumstances. Data that is illuminated – figures + context.

Suggestions for new indicators - School days lost. Cost at local level.

Which agencies should be involved? Who should be influenced to prevent injury?

Indicators may be directed towards a group of people eg Social Services. It may be about social context and

supervision.

Wide perspective to look at postcode initially and then narrow down to more precise.

Research. Could this be the role of the Public Health Observatory? Easier to collect.

Numbers. If Sure Start is right high postcodes should be in Sure Start areas.

Health Visitors would know. Issues around privacy and confidentiality.

A&E records should give ethnicity. Social Workers know the community.

Recommendation for a Project?

Problems encountered were perceived to be putting Public Health policies into practice and that targets need to be

reorganised for both Public Health and clinical practice, with outcomes being recorded. This should not be a Government

Down approach, but rather with Health Visitors, School Nurses etc given budgets to ‘change activist dissent’ and secure

ways of working to enable targets to be achieved (with Community Development Workers). Current gaps in information

relating to injury include injury by Ward, School and Primary Care, which would allow professionals to look for patterns of

injury in specified localities and feed these to Local Health Authorities. It was suggested that the Bottom Up approach

should be piloted with the Children’s Planning Groups selecting strategies eg severe injury. The group could then feed

information back and say what is required at a strategic level (suggest a pilot scheme in a school in order to monitor

closely).

The processes could be broken down as follows:

Exposure Injured

No access to Healthcare sought

Healthcare from Hospitals, GPs,

Other services

Population

Discussion around some of the factors that contribute to severity of injury such as cycle helmet wearing. It was noted that

parents need to be targeted effectively as well as schools, and that safe facilities should be provided for children.

Comment as to whether this meant that less people should be encouraged to do a particular activity or more safety

equipment should be provided, because it is important to look at potential ‘exposure’ to injury in order to target resources

and that some activities are more hazardous than others. How can interventions be targeted if there is no information on

what makes an activity dangerous? Safety equipment needs to be provided at a low cost to the client, and also need to

invest in safe environments.

Issue of Social Deprivation and looking at Joint Provision through Partnership between Health and Local Authorities. It

was felt that Health Practitioners needed to be able to get local profiles of simply represented data (Local Graphs) to help

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with strategies and provable results. Also more detailed information from A&E and hospitals. Comment that the volume

of data would be difficult to manage and that it would be a huge undertaking. Steve Jarvis has used ambulance data to

focus on a locality as an indicator that something should be looked at in more detail and that there may be potential in

using the Fire Service in this way.

There were several comments on the gaps in, and incompatibility of the various information systems used and what kind

of information would be useful. There were also comments on the need for a strong evidence base of what works, so that

effective prevention programmes can be duplicated in other areas. This might also attract funding to extend programmes.

Ideally a shared database might have elements from the Health Authorities, Local Authorities, Fire Service, Police,

Census Data, A&E data, NHS Direct walk- in centres, etc. This would provide sufficient information to answer the

question of how does that relate to ‘my’ aspect of the work, and how does this information relate to my locality – eg using

scooter injuries in a particular location to target interventions at locality and individual levels.

The best time to talk to anyone about injury prevention is after they have sustained an injury. Real time access to

information for a locality, customised for practitioners and using data from as many sources as possible would be ideal,

but more co-ordination of information is needed.

Wish List

Improved access to local data, Ward/ED/School ♦

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Co-ordination of data between organisations

Central body to collate/provide data and look at timescales in order to recognise trends. Need more information than

severity of data.

Cost benefits

Informing policy

Investment

Monitoring

Risk exposure

What’s collected – who for and why

Individual/Community

Local/National

To ‘humanise’ data. Look at the context and circumstances within the Home Injury Surveillance System and LISS.

Disseminate data to Local Authorities; to inform the public through media. It was noted that injury prevention always

dropped to the bottom of the agenda.

Definitions of severity. Need to include less severe, more frequent injuries from A&E and GPs. A range of sources

and types, clearly defined targets and co-ordination of other agencies. Also need to know what data is currently held

by other agencies.

New indicators in other areas. More non-health outcomes, academic attainment/school days lost; cost if the injury is

at a local level.

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Action

Children’s Planning Group. To influence policy and feed information to relevant groups. ♦

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Electronic Surveillance System which is self-reporting through schools /pupils and various organisations.

IT systems linked also to ambulance/police etc for comparison/accuracy purposes.

Public Health Observatory to bring data together with the Child Health Information group. An electronic trigger is

needed to flag potential hazards and feedback to services, together with evidence of effectiveness. Common access

is needed at different levels for planning, information, evidence of best practice etc.

Internet

Software packages

Evidence of effectiveness

‘PIN’

Self input of data by parents

Provide a mechanism to collate qualitative data e.g. ‘Sure Start’ targeting specific injuries – under 5’s, home injury.

National Task Force AIT (Accidental Injury Task Force) to provide a list of targets by the end of the year, then co-

ordinate with agencies eg fire services and other house fire information. A small list of clear focused targets.

Local co-ordination between agencies – what information already held.

Child Health Information to develop new indicators, possibly overlapping with disability and maybe using Lifestyle

Assessment Questionnaire to study impact. Need to identify linkages eg social deprivation. CHI project pulling 6

areas together identifying areas of overlap.

Services

Gaps

24

Low Birthweight

Group Discussion

A desire to improve the quality and to motivate those people contributing information on low birth weight. Several

members of the working group thought that there should be regular feedback to data collectors on a weekly or

monthly basis, specifying the information from their particular unit – in this case, Maternity Units contributing

gestational age and birth weight data.

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Question as to why the Child Health Systems run by each District did not produce standardised data collection. It

was felt that there should be a minimum dataset specified for these data, particularly to cover gestational age and

other fields, which contribute to population wide data.

A need for some kind of facility for research and development of new data sources, and to improve the interpretation

of existing data. The Public Health Observatory might provide a central facility for this with respect to child health.

New technology used for data capture should also be used to ease data collection, by feeding back instantaneously

to people inputting the data the quality and relative meaning of their information, possibly linking it to the evidence

base.

There was felt to be a need for ‘information about information’ in the sense of signposting where to look for expert

guidance on collection and interpretation of data.

There was a general appreciation that the access which people are offered to information must be appropriate to

their level of skills.

Possibly the need for a low birth weight working group to look at new/better data for the future.

Wish List

Gestational age must be provided. Urgent action is required on this.

Maternal smoking and its impact on perinatal morbidity and mortality.

Outcome data. There is no data on how babies are progressing later in their lives.

Address data quality by Timely and Relevant feedback to data collectors.

A central data facility, with access to common data sets from four areas, fed into it.

‘1 stop shopping’ with a 2-way electronic and human link.

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USER

Common Data Set?

Data collection + local data facility

Central Data

Facility

Consistent and useful interpretation of evidence for user use. ♦

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Action

As there is no collection of National Data it is important to lobby for gestational age with those registering births.

Action at Tyne & Wear level to agree collection of smoking data.

Action for Child Health Information project to pull out data on the 9-month Health Visitor check and collate by regional

or local level to low birth weight and low gestational age.

Organisation and Resources. Child Health research and information team at regional level (the PHO could fulfil this

role)

Investment at local level including new technology to facilitate

Data protection

Feedback (Vital)

GIS

Access to data should be easy and appropriate (eg in layers from raw data to Standard

Tables)

National Level. Training of Health and other Professionals in the use of interpretation of the data.

26

Cerebral Palsy

Group Discussion

Issue of looking at all disabled children rather than just the group of children with Cerebral Palsy. ♦

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Participation – what is the level of participation in different communities.

The need to gather a comprehensive database across services.

Is every child getting some kind of Care Plan?

Do children with Cerebral Palsy follow different routes as they get older eg Learning Disability, Sensory Impairment.

There is information already available on Children with Cerebral Palsy, which Health can access.

Issue highlighted in opening address regarding the difference between children in Sunderland and Newcastle in their

take up of services. It was suggested that it would be interesting to obtain the statistics, then look behind them to see

what issues lie within.

Why does take up of services vary in different areas?

More focused when planning services. Providing services that meet assessed need.

Look at information in a National Basis and compare with other Local Authorities.

A request from Northumberland to be included, as they feel part of the group and are involved in some of the work

that is carried out within the HAZ framework.

Methodology – Issues about what are assessed needs. Are we looking at the child’s needs, and the carers needs?

The carers may be managing but the children are not. Important to look at what the child’s own needs are. Do we

hear their voice?

Noted that there is research being carried out around ‘young mothers’.

Most research is undertaken with parents and becomes the adults view rather than the child/young persons

view.

Co-ordinated approach. Taking a more broad based review. It was felt that children only come to the attention of

Social Services when carers can manage no longer.

Children who have specific Health requirements, which their carers cannot undertake, may have to be admitted to

respite care. This would not be necessary if there were trained carers who could offer a response to families. There

is a need to develop a resource that is flexible and can be shared within districts.

Look at policy in a broader way and information that can be shared. An example of this was discussed in the context

of inclusion. Should a child be placed in care when a break is needed, as under normal circumstances they would

not be placed out of the family. Is information required in this area and could it be shared more widely.

It is necessary to look at information in relation to need. Making information available on good practice and adapting

that to each authority.

Information available to Health is used in that particular Forum as is the case with information available to Education

and Social Services, and they are struggling to work together.

In North Tyneside pooled budgets are being introduced and this is seen as a way forward.

It was felt that there are difficulties around accessing the plethora of funding and having knowledge of the various

streams.

The Health Service Structure was seen as a real barrier to services working together.

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Wish List

Epidemiological Factors. More information on the diagnosis, geographical areas etc. ♦

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Service Needs. Needs of children with Cerebral Palsy, to plan services. Problem because of the lack of

epidemiological evidence.

Research. To look at service take- up and participation.

Action

Locally

Epidemiology. What is the difference geographically in diagnosis? Are children diagnosed younger? What are the

Socio-economic factors? Service Needs from the children/young person and carer’s view. Low incidence issues.

Service Take-up from the child/young person and carer’s view. Views on Inclusion. It is difficult to get their views.

Who is not getting a service? Children in short break service under 5- what type of need do they have?

Disseminate existing information. Include Northumberland in the exercise and within HAZ. Research with families

on participation eg look at views of young people on the services they receive. There appears to be quite a lot of

data on children with Cerebral Palsy that could be shared with families as well as services. How do we do this most

effectively? Broaden out the group to include other disabled children. How can we relate the information into a wider

field and reflect the complex needs of all children?

Role out to HAZ the Joint Health, Education and Social Services Disability Register. Develop a shared database with

agreed protocols and develop the already existing good links between key agencies in the North East.

Nationally

Information on Short Break providers, which can be refreshed regularly. Is it possible to find information on National

Figures of successes and failures, themes, numbers, trends? It was thought that the evidence was not available.

The Government promotes joint working. Should funding be made available for this?

Promote positive attitudes to Disability/Participation.

What are the gaps? Regional collaboration?

Care about what we are measuring.

Issues already explored with National Comparison – comparator authorities.

External Funding Streams.

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Synthesis Discussion

Tricia Cresswell said that the key issues seem to be sharing, coordination and cross-agency information for everyone –

with appropriate technology – as well as humanising data and funding from Government for a firm evidence base.

A national lobby is needed for registration of disabilities and gestational age.

We need to look at the CHI outputs and decide what to take forward (see Northern & Yorkshire website – NYPHO.ORG

(doesn’t work!).

There are some issues about the sophisticated level of information. A report consolidating the day will be fed back to

everyone.

The PHO provides a central signpost to take work forward for Primary Care Trusts, local Tyne and Wear intelligence,

Units across Local Authorities and other bodies taking on smaller roles. We need to look at what is there in the way of

resources, expertise and localities with the potential to take things forward. Note that ‘disability’ is a much wider field than

CP. Consider Louise’s model of different work taking place in different locations, all linked and signposted.

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