Campaigning Priorities for 2016
In advance of the May Holyrood 2016 Elections, ASCS calls upon the Scottish Government, elected Members of the Scottish Parliament and those responsible for the formulation of healthcare policy to ensure that the healthcare rights of all children and young people are upheld in line with the European Association for Children in Hospital (EACH) Charter, which is underpinned by the UNCRC, click here to read the Manifesto.
ASCS will continue to campaign for the right of children and young people absent from school due to illness to receive appropriate education, (see below). Our 2012-13 Parental and Family Facilities Access Survey of Scottish hospitals which admit paediatric patients reported at a Scottish Parliament event in October 2013. The Survey findings highlighted areas where progress needs to be made and as a result ASCS has identified the following campaigning priorities:
- Healthy food/nutrition to be provided for children in hospital. Click here for our Report on Food for Children in Hospital 2015. This Report contains findings of our surveys on parents/carer experience of mealtimes and the food provided for their children in hospital and the findings of our Survey of NHS Boards Dietetic and Catering Leads and CEOs.
- ASCS has met with Scottish Government officials reviewing the 'Food in Hospitals (Scotland) 2008 Guidance. Please click here for ASCS's recommendations on the Revised Guidance.
- Improved provision for Parents/Carers on the day of their child's operation
- Facilities for young people in hospital.
Current and Recent Campaigning Activities
A recent campaigning focus has been on ensuring equal access to education for all children and young people at times of illness. The following gives an overview of this campaign which resulted in the Scottish Government setting up a Stakeholder Group to review the existing Educational guidance on the Absence from School of Children and Young People through ill-health. ASCS is a member of this group which has met through 2013 and it is hoped that the revised Guidance will be put out for consultation in Spring 2014.
In October 2012 ASCS hosted a display at the Scottish Parliament
Education Minister Michael Russell at ASCS Stall at Parliament Oct 12
which raised awareness of MSPs about the need for appropriate and equitable education provision for children and young people absent from school due to illness. Alison McInnes MSP sponsored the display which was visited by many MSPs. In August 2012 Alison McInnes lodged a motion in support of ASCS and for our work in campaigning for proper educational provision.
Manifesto for the Scottish Government, Members of the Scottish Parliament and those responsible for the formulation of healthcare policy.
ASCS marked the start of its campaign EACH Child and Young People's Health Matter to raise awareness of the healthcare needs, rights and responsibilities of sick children, young people and their families in December 2009 at a Reception at the Scottish Parliament hosted by Christine Grahame MSP. At the event ASCS also launched its manifesto which calls for changes and improvements in areas relating to child healthcare provision.
As part of this ongoing campaign, ASCS on 31 December 2010 lodged a petition on the provision of education for children and young people absent from school due to illness with the Scottish Parliament. The petition
Calls on the Scottish Parliament to urge the Scottish Government to (a) demonstrate how all local authorities are consistently complying with the duties imposed on them by sections 1(1) and 14(1) of the Education (Scotland) Act 1980 and section 2 of the Standards in Scotland's Schools etc. Act 2000 in respect of all children and young people who are absent from school through ill-health, regardless of where they live or where they are being treated and (b) review the Guidance on the Education of Children Absent from School through ill-health (Circular 5/2001)
isThe Public Petitions Committee (PPC) considered the petition in January and in February 2011 when it agreed to seek a further response from the Scottish Government and to invite in its legacy paper, the Session 4 Public Petitions Committee to further consider our petition. It was then considered by the new Public Petitions Committee in September when the Committee decided to continue the petition and asked the Scottish Government to ask a sample of local authorities what they do to ensure that families know what education their child can expect when absent from school due to ill health. At a further meeting in November the PPC decided to close the Petition on the basis that the Scottish Government had agreed to review the Guidance on the Education of Children Absent from School due to Ill Health and that ASCS had been invited to take part in a stakeholder group to review this guidance. The first meeting of this group met in March 2012 and the second meeting took place on 1 February 2013. We hope that the business of reviewing the Guidance will move more speedily now that the Group has further dates fixed and the draft Guidance should be available for conslutation by the end of 2013. ASCS is pleased to take part in this review and we hope that the new Guidance will help to improve education provision throughout Scotland. The full detail of our petition
Parental Access and Family Facilities Survey 2012-2013
Since 1985 we have regularly surveyed the hospitals in Scotland which admit children to establish the facilities available and the progress made in terms of accommodating the needs of sick children, young people and their families. Our last Family Facilities Survey 2012-13 was published in October 2013 and was funded by the Scottish Health and Social Care Directorate. The surveys have a dual purpose. They enable us to monitor and report on developments and improvements in the care of sick children and help us to identify areas of concern and we raise these with those who influence change. The surveys also inform parents of provision within their local area. The latest survey can be accessed on our Reports page.
Specialist Children’s Services Review and the National Delivery Plan
We participated as members of the Steering group for the above review which amongst other reports and recommendations specifically recommended the raising of the age at which young person had to transfer to adult services. Action for Sick Children Scotland was represented on the National Delivery Plan (NDP) Specialist Children's Services Implementation Group (NDPIG), which was set up in the wake of the NDP, to manage the distribution of additional Scottish Government funding for these specialist services.This group is now known as the Specialist Services for Children and Young People Monitoring Group and we continue to work on this important group. We have also worked in partnership with National Services Division and the Government to develop a pathway which will seek to make more transparent the financial support system for families when accessing health services away from home.
The NDPIG has produced a number of newsletters describing thier activities and the benefits to Specialist Children's Services of the new funding. ASC(S) is delighted to have written articles for two of these publications. Newsletter 1
and Newsletter 2
Influencing Service Provision for sick children, young people and families
We work with health professionals on the following groups and committees to improve standards of care for sick children and young people. In Greater Glasgow & Clyde NHS this includes: Better Together Quality & Monitoring Steering Group; the Royal Hospital for Sick Children Glasgow (Yorkhill) FILES (Family Information Leaflet Editorial Service) Group; New Sick Children’s Hospital: Community Engagement – Family and Youth Panels: Rights of the Child Group: Clinical Services Review - Child and maternal Health Steering Group and Patient Reference Group; Stakeholder Group for Transition for Children and Young people with cerebral palsy
ASCS supports patients who wish to influence the design and development of healthcare services and polices that will affect them. Service providers need to take account of the views of service users. ASCS assisted a young person with complex health needs to get involved in the Youth Panel for the new Sick Children’s Hospital in Glasgow. We have also supported a parent of a young person with severe asthma to be a lay representative on the NHS Greater Glasgow & Clyde Young People’s Service Development Group: QIS Asthma Guideline Implementation Group.
For more information about how to have a say in the shaping of child health services see How we help families
We formed part of the national steering group for the development of a new national template for a patient held child health record. At present all health boards have their own individualised Red Book and it is felt that a standardised national format would be of benefit both to families and healthcare professionals alike.
Caring for a Sick Child Tayside Survey
In 2007 ASCS conducted a survey examining the impact on families of caring for a sick child in Tayside. The findings and recommendations arising from this survey were passed on to relevant agencies in Tayside. The Caring for a Sick Child Report can be downloaded and further information about the project accessed in our Previous Projects section.
Dental Surgical Services for Children in Scotland Survey
In 2007 ASCS reviewed and reported on the play preparation and child-friendly support available for children and their families requiring surgical dental treatment. The report Dental Surgical Services for Children in Scotland
encourages NHS dental services in Scotland to adopt standards of care for the provision of appropriate preparation of children for dental surgical treatment. For more information click on Previous Projects