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Welsh Health Circular

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Welsh Health Circular WHC (2004) 085 WELSH HEALTH CIRCULAR Parc Cathays Cathays Park Caerdydd CF10 3NQ Cardiff CF10 3NQ Issue Date: 29th December 2004 Status: FOR ACTION Title: MY ORANGE BOOK – A HAND HELD RECORD FOR DISABLED CHILDREN WITH COMPLEX NEEDS For Action by: Chief Executives LHBS Action required See paragraph(s) : 9, 10. For Information to: Chief Executives NHS Trusts; Postgraduate Dean University of Wales College of Medicine; Heads of Healthcare Education Departments; Directors of Social Services; Directors of Education; Pupil Support Managers; LA Heads of Children’s Services; Managers of Health Visiting and School Nursing; Managers of Children’s Nursing Services; Officer for Wales RCPCH. Sender: Irene Allen, Head of Women and Children’s Branch, Children and Families Directorate National Assembly contact(s) : Ann Noyes, Children and Families Directorate Tel: 029 2082 5302 E-mail: [email protected] Enclosure(s): A Welsh version of this circular is available on request 1 Tel: 029 20825111 GTN: 1208 Llinell union/Direct line: 029 2082 5302 Ffacs/Fax: 029 2082 3666 Minicom: 029 20823280 http://howis.wales.nhs.uk/whcirculars.cfm Distribution List Chief Executives NHS Trusts Chief Executives Local Health Boards Director NHS Confederation in Wales Director National Public Health Service Chief Officer Association of Welsh Community Health Councils Director Welsh Local Government Association Dean University of Wales, Bangor Chief Executive Commission for Racial Equality Chief Executive National Leadership and Innovations Agency Secretary British Dental Association in Wales Postgraduate Dean University of Wales College of Medicine Heads Healthcare Education Departments Director information services University of Wales College of Medicine Secretary British Medical Association (Wales) Regional Head of Health UNISON Board Secretary Royal College of Nursing (Wales) Welsh Council Representative British Dietetic Association Wales Secretary British Orthoptic Society Wales Secretary AMICUS MSF Regional Secretary The GMB Regional Secretary Transport & General Workers Union Chair Community Pharmacy Wales Chair Royal College of General Practitioners General Secretary Wales TUC Assistant Director Chartered Society of Physiotherapists Officer for Wales Society of Radiographers IR Officer Society of Chiropodists and Podiatrists Regional Secretary Union of Construction Allied Trades and Technicians Board Secretary for Wales Royal College of Midwives Officer for Wales AMICUS Electrical & Engineering Staff Association Regional Secretary AMICUS Amalgamated Electrical and Engineering Union Welsh Executive Royal Pharmaceutical Society of Great Britain Information Officer Wales Council for Voluntary Action Chief Executive Wales Council for Voluntary Action National Member for Wales AMICUS - Guild of Health Care Pharmacists Business manager Institute of Health Care Management Welsh Division Chief Executive Association of Optometrists Librarian British College of Optometrists Director General Audit Commission (Wales) Director Business Service Centre Patch Managers Business Service Centres across Wales (6 copies each) Secretariat Statutory Committees Regional Directors NHS Wales Regional Offices Chief Executive Health Commission Wales (Specialist Services) Chief Executive Health Professions Wales Librarian National Public Health Service Chief Executive Welsh Language Board / Bwrdd yr Iaith Gymraeg Librarian Health Promotion Library 2 Directors Social Services Directors Education Heads Children’s Local Authority Services Managers Health Visiting and School Nursing Managers Children’s Nursing Services Officer for Wales Royal College of Paediatrics and Child Health Dear colleague, Summary 1. This Circular provides information on the forthcoming introduction of an all Wales Hand Held Record for disabled children with complex needs. In particular, it sets out actions that will be necessary in preparation for this distribution. 2. The provision of this record is one of the key actions (5.2) of the consultation version of the National Service Framework for Children, Young People and Maternity Services in Wales. It is also a Service and Financial Framework (SaFF) Target for 2004/05: To ensure that by March 2005 parents of every disabled child (as defined by the Children Act 1989) with complex needs (i.e. children who require more than two agencies, not including the universal services which all children receive) have a hand held record detailing the case history for that child in accordance with central guidance to be issued in 2004. Background 3. As part of the development of the National Service Framework (NSF) for Children, Young People and Maternity Services in Wales the Welsh Assembly Government commissioned a series of consultation exercises with children, young people, parents and carers. In these consultation exercises, one of the consistent themes which emerged was the request for a Hand Held Record by parents of disabled children with complex needs, as they found the process of repeating the same story time after time to different professionals both distressing and exhausting. 4. In response to this request the provision of this record became a key action of the NSF for Children, Young People and Maternity Services in Wales consultation document, and also a SaFF Target for 2004/05. 5. A Task and Finish Group, composed of key stakeholders from around Wales, was established in January 2004 to develop a pilot version of the Hand Held Record. Following an examination of existing similar Hand Held Records in the UK the group decided to base the Welsh record on the Orange Book which had been developed by Cornwall Partnerships NHS Trust as a Health Action Zone (HAZ) funded project. Permission was gained from Cornwall Partnerships NHS Trust to adapt the Orange Book for use in Wales. As this record had been independently evaluated by Exeter University, the Task and Finish Group was able to use this evaluation to guide their revisions to the record for use in Wales. 6. The resultant pilot version of the Hand Held Record was called My Orange Book and was piloted with 120 disabled children and young people with complex needs in diverse areas around Wales. The report of the evaluation of the pilot has been sent to LHBs and can be 3 viewed on the Children’s NSF web site: http://www.wales.nhs.uk/nsf (click on Children’s NSF and follow the links to Hand Held Records for Disabled Children). 7. The results of the evaluation indicated that considerable revisions were needed to enable the record to meet the needs of families. The evaluation also highlighted the importance of ensuring that a training and awareness-raising programme took place before distribution of the record and that clear protocols were established for distribution of the record and supply of replacement materials. Timescales 8. A letter was sent to LHBs on 3rd December 2004 to inform them about a delay to the launch of My Orange Book, which was originally scheduled to take place during October 2004. The letter explained that this decision was taken to allow more time to take full account of the pilot results, as it was felt this would maximise the full potential of the record. The revised record will now be distributed to LHBs during February 2005 for distribution to families who meet the qualifying criteria (as specified in the SaFF Target) during March 2005. Action 9. LHBs will be responsible for distribution of the record to relevant professional teams in their areas. Appropriately trained professionals will be required to offer the Hand Held Record to parents of disabled children and young people with complex needs in accord with guidance notes for professionals which will accompany the record. 10. LHBs are required to inform the National Assembly contact for this circular by 31st January 2005 of a named person from the LHB for My Orange Book. Key Action 2.16 of the consultation version of the National Service Framework for Children, Young People and Maternity Services in Wales states that each LHB should have a Lead Officer and a Lead Member for children and young people (as specified in The Children Act 2004). It is anticipated that the named person for My Orange Book should be linked and/or report to the LHB Lead Officer and Lead Member for children and young people. The named person would have the following responsibilities: Organisational ♦ Inform the Assembly Government of the numbers of records required for initial distribution in March 2005 and estimated numbers required for 2005/06 (if this has not already been done); ♦ Order supplies required for subsequent years as well as any replacement stationery required; ♦ Arrange for distribution of the record to relevant local Child Disability Teams or other appropriate professionals who will then offer the record to families that meet the criteria; ♦ Ensure accurate records of distribution are maintained. This information will be used when a review of the use and effectiveness of the record is carried out in 2 years time; ♦ Ensure that there are effective local protocols for professionals to obtain supplies of the record as well as replacement materials as necessary. Co-ordination ♦ As part of the LHB commissioning role ensure that there is a lead person within NHS Trusts for My Orange Book; ♦ Liase with other relevant organisations to ensure effective use of My Orange Book. 4 Training ♦ Facilitate local training and awareness raising in correct use of the record for all relevant professionals. 11. With regard to training and awareness raising, the Assembly Government will issue a further WHC early in 2005 with information regarding the development of initial cascade training in the use of My Orange Book, prior to its distribution by the end of March 2005. Queries Queries about this circular should be addressed to the National Assembly contact at the front of this WHC. Yours sincerely IRENE ALLEN Head of Women and Children’s Branch Children and Families Directorate Welsh Assembly Government 5.
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