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Children with Support and Care Needs

Child Health

NHS National Services Scotland ISD Scotland & NHS National Services Scotland

Children with Support & Care Coordination Needs

Latest Publications

Published: 27 March 2012
Support Needs System (SNS) Summary Statistics as at August 2011
Publication Summary Download pdf file [72kb]
Full Report Download pdf file [115kb]

The Support Needs System (SNS)

The aim of the Support Needs System (SNS) is to enable early identification, assessment and monitoring of children with additional support needs - in a consistent manner across Scotland.

A child might be identified as having additional support needs if they require support over and above that usually given to all children. This might be in the form of therapy or equipment and should be required for at least six months. A child will be registered on the SNS if a health visitor, doctor or therapist involved with their care considers it appropriate and following discussion with his / her parent(s) or guardian(s).

The SNS is a sophisticated clinical tool that provides the facility to record accurate details of the child's problem or condition, including a detailed disabilities / impairments section. It also records the support or services a child requires and is receiving or using, details of health care professional/s involved and any other pertinent information relating to a child's care in a 'Shared Notes' section. All information about a child can be updated regularly, at each assessment.

The SNS is the most advanced clinical system available in this field. It provides an efficient and consistent means of recording detailed child-specific clinical information for Scottish children and young people with a wide range of disabilities. The SNS has now been implemented in twelve NHS Boards, though the level of implementation and utilisation of the system varies across participating boards.

For further information about the Support Needs System, please click on the links below:

Background Information

The Support Needs System (SNS) was established in 1993 and has now been implemented in twelve NHS Boards in Scotland, though the level of implementation and utilisation of the system varies across participating boards.

The System has been introduced in phases within NHS board areas. Full implementation to cover all units within some NHS Boards might therefore have been several years after the initial implementation date. Shortages of administrative and/or clinical staff have unfortunately meant that use of the system has, at times, been interrupted in some NHS Boards. Interruptions to the use of SNS are not an indication of a lack of confidence amongst users. In areas where users have been forced to temporarily suspend use of the system, both clinical and administrative staff are keen to resume use when appropriate resources are available. NHS Boards that have not implemented the SNS use their own locally devised electronic or paper recording systems.

The participating Health Boards implemented SNS on the following dates:

NHS Board Year of Implementation Notes on Implementation
Ayrshire & Arran 2001 In general, SNS has been consistently used.
Borders 2000 There are currently very few records on the system.
Dumfries & Galloway 2001 Use of SNS is very limited and there are currently very few records on the system.
Fife 2004 (relaunched in 2008) SNS has recently been relaunched but there are currently very few records on the system.
Forth Valley 2007 There are currently very few records on the system.
Grampian 1996 SNS has been consistently and extensively used.
Greater Glasgow & Clyde Former Argyll & Clyde 1993

Rest of Greater Glasgow & Clyde 2010
SNS was implemented in the area of NHS Greater Glasgow & Clyde inherited from the former Argyll & Clyde NHS Board in 1993 and has been consistently used (covers Renfrewshire and Inverclyde, and part of West Dunbartonshire and East Renfrewshire Community Health Partnership areas). The rest of NHS Greater Glasgow & Clyde began implementation of the SNS in August 2010 and by the end of 2010 the system was implemented in all units.
Highland (Argyll & Bute CHP area only) 1993 SNS is implemented in the Argyll & Bute council area of NHS Highland only and has been consistently used in this area. NHS Highland inherited this area from the former Argyll & Clyde NHS board which ceased to exist on 31st March 2006.
Lanarkshire 2001 SNS is consistently used but staff shortages and staggered implementation have reduced overall registrations.
Lothian 2002 In general, SNS has been consistently used.
Shetland 1994 The use of SNS has been hindered as Shetland has no lead Paediatrician.
Tayside 1997 SNS is currently not consistently or routinely used. The numbers therefore are not accurate and do not reflect work activity or needs in that area. At present SNS is predominantly being used for children with exceptional healthcare needs (CEN), and being considered for children with cerebral palsy as part of the hip screening programme.

Figures from the SNS must be read with caution as the system has not been fully implemented in all NHS Boards across Scotland and implementation and utilisation vary in the NHS Boards currently using it. For example, in some areas children with more complicated problems are targeted for assessment in SNS, e.g. NHS Lanarkshire, whilst in other areas children with a wider range of problems are being assessed in the system e.g. NHS Grampian. Grampian has the highest proportion of children active on SNS. This does not indicate that Grampian has more children with support needs than other NHS Boards but rather is a reflection of the extensive clinical use of SNS in Grampian.

Particular care should be taken when viewing figures for individual NHS Boards that are based on small numbers as these can give an unrepresentative picture of activity in that NHS Board. For example, as at August 2011 (the latest published statistics) NHS Shetland had small numbers of children with data recorded on SNS and data for NHS Fife and NHS Dumfries & Galloway are excluded from the SNS summary statistics, due to very small, unrepresentative numbers.

For these reasons SNS figures cannot be used as direct indications of the prevalence of particular conditions or factors in the wider population and should not be used to make comparisons between NHS Boards.

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Referral and Assessment Process

A number of different types of health professionals can refer a child for inclusion on SNS. For example, a Health Visitor, General Practitioner or School Nurse seeing a child might consider it appropriate for a child to be registered on the SNS. If this is the case, they notify the Child Health Department in their area using the SNS Referral Form Download pdf file [250KB]. Basic personal details and reasons for referral are then provisionally entered onto the SNS. A formal assessment with the clinician responsible (usually a Community Paediatrician) is then scheduled.

The clinician responsible will then view the child's notification information and decide whether to:

  1. assess the child straight away;
  2. delay assessment until a later date; or
  3. cancel the assessment altogether if they feel it is unnecessary.

During assessments, the following information can be entered or amended on the SNS assessment form Download pdf file [30KB]: child's personal and family details, functional assessment details, coded definitions of problems or conditions, service requirements / use and also other information as free text (for example, concerning the wider social context of a child and their family).

In the 'functional assessment' section of the form, details of both physical and behavioural disabilities / impairments are recorded. In October 2007, this section was revised (see page 3 'Functional assessment' in the assessment form above). The section of the assessment form for recording service requirement information was revised in March 2009 (see page 4 in the assessment form above). SNS summary statistics derived from the revised impairments and services pages have been adjusted accordingly (the revised impairment statistics are available from the December 2008 publication onwards and the revised services statistics are available from the March 2010 publication).

If a child is recorded with Cerebral Palsy, the clinician will be prompted to record additional, more detailed information (Cerebral palsy form) Download pdf file[17KB].

Copies of the assessment forms containing the previous versions of the disability / impairment and services pages, and summary statistics derived from these, can be found on the SNS summary statistics archive web page.

The clinician will also indicate on the form when the child should next be assessed - the frequency of reviews being determined by the specific needs of the child and their family.

A child will be de-registered from the system if they no longer have additional support needs, if they have moved away from that NHS board area (their record will be transferred if they have moved into another area using SNS), or if the child has unfortunately died. A child's record can be deleted from the SNS if, for whatever reason, the parent / guardian no longer want information about their child held on the system.

The clinical guidelines Download PDF file [1MB] were updated in May 2014.

The definitions Download PDF file [30KB] for impairments and severe impairments were revised in December 2015.

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Users of SNS

The principal users of SNS are Community Paediatricians and other healthcare professionals based in Community Child Health Departments. Information recorded on assessment forms by these personnel is entered into the electronic system by data entry staff.

Healthcare professionals such as General Practitioners, Hospital Consultants, Dental Specialists and Allied Health Professionals (Health Visitors, Speech and Language Therapists, Physiotherapists and Occupational Therapists) can receive child-specific summaries of information held in the SNS. The aim of this is to assist in the management of their caseload and improve the co-ordination of care for individual children.

Users of the SNS meet on a quarterly basis at the National User Group (NUG) meetings. At these meetings, clinical and administrative representatives from each user Board give feedback on the use of the system in their area. Proposals for further developments of the system are discussed and external speakers are regularly invited to increase collaborative working with other organisations and systems. Where appropriate, specialist sub-groups are set up to deal with particular issues or developments. In this way the system is continuously up-dated and tailored to meet the requirements of users in clinical setting and the requirements of other stakeholders.

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Statistics

Figures from the SNS must be read with caution as the system has not been fully implemented in all NHS Boards across Scotland and implementation and utilisation vary in the NHS Boards currently using it. For example, in some areas children with more complicated problems are targeted for assessment in SNS, e.g. NHS Lanarkshire, whilst in other areas children with a wider range of problems are being assessed in the system e.g. NHS Grampian. Grampian has the highest proportion of children active on SNS. This does not indicate that Grampian has more children with support needs than other NHS Boards but rather is a reflection of the extensive clinical use of SNS in Grampian.

Particular care should be taken when viewing figures for individual NHS Boards that are based on small numbers as these can give an unrepresentative picture of activity in that NHS Board. . For example, as at August 2011 (the latest published statistics) NHS Shetland had small numbers of children with data recorded on SNS and data for NHS Fife and NHS Dumfries & Galloway are excluded from the SNS summary statistics, due to very small, unrepresentative numbers.

For these reasons SNS figures cannot be used as direct indications of the prevalence of particular conditions or factors in the wider population and should not be used to make comparisons between NHS Boards.

Implementation dates and background information for each SNS NHS Board are available above. For further information relating to the implementation of SNS in a particular SNS NHS Board, please email the appropriate Child Health Department Contact.

SNS Annual Summary Statistics

Local analysis has been carried out in SNS User Boards since implementation of the system in each area. This is used to plan local services and to monitor recorded levels of particular aspects in each NHS Board area. Summary statistics for all participating Boards were first published in December 2005. The statistics represent a 'snap-shot' of information held on the system at the time the data were extracted. The most recent annual publication is Support Needs System Summary Statistics as at August 2011 (released in April 2012)Download PDF file. In conjunction with key stakeholders it was recognised that the annual publication was of limited value given that the variation in the implementation and use of the system across NHS Boards means that the data can't be used to provide direct indications of the number of children with specific conditions. Therefore the annual publication will no longer be produced.

However it is recognised that SNS data is of value for local purposes and ISD continue to provide support to the Support Needs System National User Group and the National Managed Clinical Network for Children with Exceptional Healthcare Needs.

The statistics can be found at SNS Summary Statistics and SNS summary statistics archive.

Complex Needs Analysis

Data from the SNS were used to make estimates about children and young people with 'complex needs' in Scotland for the Kerr Report (Professor David Kerr; 'Building a Health Service Fit for the Future').

During 2005 it became evident that a number of different definitions for Multiple and Complex Disabilities (MCD) were in use across Scotland. The Child Health Information Team (CHIT) in ISD, therefore worked closely with specialist members of the Scottish Complex Needs Network to agree a nationally consistent definition. In May 2006, a standard Definition of MCD Download Word file [35KB], based on data collected on SNS at that time, was agreed. Figures obtained using this definition have been included in the SNS summary statistics publications for 2006 and 2007.

The MCD definition is to be revised to take into account the revisions to the recording of disability / impairment data on SNS, which came into effect in October 2007. Once this revised definition has been agreed, MCD statistics will again be included in the SNS summary statistics.

Children with Exceptional Needs (CEN) are a small subset of those children with MCD / Complex Needs. The National Managed Clinical Network (NMCN) for Children with Exceptional Healthcare Needs (CEN) started in March 2009, with the aim of strengthening and developing specialist services for children with exceptional healthcare needs in Scotland. The group of children and young people this network is aimed at is defined by their complexity of healthcare, rather than their diagnostic label.

SNS Evaluation Report

During 2002-2004, a project to evaluate the effectiveness of the SNS was funded by NHS Quality Improvement Scotland. This evaluation included site visits to NHS Boards using SNS and to NHS Boards using other locally devised systems to record information about children with additional support needs, qualitative questionnaire surveys of users of SNS and local systems, focus groups with parents of children with additional support needs and analysis of data held in SNS.

Full evaluation of the SNS compared to local systems was difficult because it was sometimes impossible to obtain detailed information about other procedures and / or data from other systems. Although broad insight into the relative efficiency and effectiveness of the SNS was gained, it was not possible to draw conclusions about specific aspects.

The practical parts of the project were done in 2002 and early 2003, but publication of the report was delayed until spring 2005. Since this evaluation was done, significant progress has been made with development of the SNS. Many of the recommendations outlined in the report have now been addressed: members of the SNS National User Group (NUG) continue to collaborate to make full use of the system and further develop it; a sub-group of clinicians and external advisers identified ways in which the registration rates of children with particular conditions could be improved at a seminar in May 2005; summary SNS statistics for all participating NHS Boards are produced by ISD and circulated twice a year to all members of the NUG; and developing relationships with charitable organisations in an effort to engage with parents and young people and to raise awareness about SNS.

Also, the National Clinical Dataset Development Programme (NCDDP) chose the SNS as the basis for development of a national dataset in this field. The NCDDP data definitions for children with support needs can be found in the data dictionary section of the ISD website.

In addition, it is hoped that through collaboration with dental colleagues, the system can be used to improve the oral health of children with disability.

SNS Evaluation Project documents:

The full report and associated documents can also be viewed on the NHS QIS website.

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Useful links for parents and carers

If you are a parent of or care for a child with additional support needs, you might find information on the following websites helpful.

Contact a Family: www.cafamily.org.uk

Children in Scotland: www.childreninscotland.org.uk

Enquire: www.enquire.org.uk

Action for Sick Children (Scotland): http://www.ascscotland.org.uk/

Family Fund: www.familyfund.org.uk

Capability Scotland: www.capability-scotland.org.uk

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