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SECTION THREE - SUPPORTING CHANGE

CHAPTER SIXTEEN: INVOLVING CHILDREN, YOUNG PEOPLE AND THEIR CARERS

This section of the Action Framework identified 5 milestones for involving children and young people based on policy contained in the Equality and Diversity Impact Assessment Toolkit ( EDIAT) and the Patient Focus Public Information ( PFPI) agenda. In addition, 6 action points were listed relating to the involvement of children, young people and their carers.

16.1 MILESTONES

The Equality and Diversity Impact Assessment Toolkit is implemented by NHS Scotland for children and young people by 2007

The consultation document asked whether consultees agreed with the milestone for the implementation of the Equality and Diversity Impact Assessment Toolkit by 2007. As shown in table 16.1 below, a majority (83%) of those who answered this question were in agreement.

Table 16.1
37: The Equality and Diversity Impact Assessment Toolkit is implemented by NHS Scotland for children and young people by 2007

Base: All those responding in each category

One Public Body stated " Impact assessments are an important tool for looking at decisions, practice, policy or legislation and identifying and measuring its effect. They permit impacts to be predicted, monitored and, if necessary, avoided or mitigated".

While the majority of consultees agreed with the implementation of the EDIAT Toolkit, one was concerned how the Toolkit will achieve results without changing culture and said "It could be a desk top exercise done by health boards". A Youth Health Improvement Group thought it would be helpful to have more information on the Toolkit. Similarly, an NHS Board stated "The Toolkit is not being publicised enough at local or national levels". Several consultees also suggested adapting the Toolkit so it is more relevant to children and young people and one Individual Professional was of the opinion:

"While the principle behind this tool is excellent, it is so big it requires serious human and financial input to implement. This timescale is not realistic".

Clear evidence of policy development at a national level based on discussion with CYP by 2006

The majority of consultees agreed with the milestone (see table 16.2), however a small number (3) were concerned about the recommended timescale of 2006.

"May not be a realistic timeframe"
NHS Board

"This is an unrealistic deadline for consultation with children and young people"
Youth Health Improvement Group

One consultee suggested consultation with parents/carers and other stakeholders should be included, and a Local Authority thought other services at SEED level should be involved.

Table 16.2
38: Clear evidence of policy development at a national level based on discussion with CYP by 2006

Base: All those responding in each category

Information that relates to children and young people is produced in accessible, age-appropriate formats by 2007

Almost all consultees (96%) agreed that information relating to children and young people is produced in accessible, age appropriate formats by 2007.

Table 16.3
39: Information that relates to children and young people is produced in accessible, age-appropriate formats by 2007

Base: All those responding in each category

Of the consultees who made comments, two mentioned 'Dialogue Youth' a voluntary organisation who already have structures and processes in place such as youth forums, e-voting and other innovative ways to obtain the views of young people. One NHS Board suggested "The use of community services and voluntary organisations such as Dialogue Youth should be used for this".

Two consultees made specific reference to the milestone target date of 2007. One considered this to be too ambitious for "Such a huge piece of work" and the other (an Individual Professional) agreed it is required but "May not be achievable by 2007". Some consultees advised that the information should be:

• Accessible for children with additional support needs (1 mention)
• Multilingual and pictorial format (2 mentions)
• Culturally sensitive (1 mention)
• Written in all disability formats (1 mention)

While one NHS Management & Strategy Group consultee supported this milestone they were however concerned "Of the availability of human and financial resources to achieve this locally".

The PFPI strategies of Health Boards and other providers specifically reflect the need to include children and young people by 2007

Of the consultees who responded to the consultation document, 92% agreed with the milestone. Only one NHS Board responded with a comment which was that " Q40 Should include 'meaningfully."

Table 16.4
40: The PFPI strategies of Health Boards and other providers specifically reflect the need to include children and young people by 2007

Base: All those responding in each category

The views of children, young people and carers are represented at all levels of NHS planning by 2008

Consultees were asked whether they agreed that the views of children, young people and carers are represented at all level of the NHS planning by 2008 (see table 16.5)

Table 16.5
41: The views of children, young people and carers are represented at all levels of NHS planning by 2008

Base: All those responding in each category

A number of consultees took the opportunity to make suggestions concerning this milestone. One thought the process required facilitation and support via mechanisms and processes that are transparent. Another consultee noted "Clarification as to what is expected would he helpful. It is hard to work out how to assess views in a useful way, and some guidelines on this would be helpful".

One Individual Professional stressed the difficulty in "Ensuring the representatives are representative" and one Public Body recommended an additional action be added that requires an interim report on progress to be produced by the end of 2007.

General comments on key milestones

Several consultees were concerned whether "Some of the timescales are realistic". One NHS Provider commented on the amount of work that will be required if all the suggested milestones are to be implemented by 2007. A Professional Body stated:

"The difficulties in achieving these milestones should not be underestimated. There is a need to consider how best to use modern communication technology to stimulate participation".

Avoiding the repetition of work was a point raised by 4 consultees. The following quote from one Local Authority best illustrates consultees' concerns:

"It would make sense if local authorities and Health Boards sought the views of children and young people on their services in a consistent and co-ordinated way (particularly since many of the services should be integrated). Otherwise we might risk pulling in slightly different directions or duplicating what the local authority is already doing."

Of those consultees who made comments, 3 made reference specifically to children and young people with special needs/ learning disabilities and highlighted the importance of involving them in decisions relating to their health. In contrast however, while agreeing on the involvement of children and young people and carers in the planning and development of services, one NHS Board pointed out "Implementing this level of involvement is not straightforward particularly in relation to children and young people with significant mental heath difficulties". One Voluntary/ Charity consultee spoke about the costs involved "Particularly the enhanced challenges and costs of involving children with specific health needs and disabilities for whom specialist consultation methods are required".

16.2 ACTIONS

The Action Framework listed 6 actions in relation to involving children, young people and their carers. The following sections discuss the main themes and points which emerged.

Pilot Reference Panel of Children and Young People

Nine consultees commented on the composition of the Pilot Reference Panel and were of the opinion this must be 'inclusive' because "It's not a case of one size fits all". The following provides a brief summary of those children, young people and their carers who should not be overlooked. For instance those children and young people:

• With complex needs
• From different cultures
• In remote and rural areas
• With disabilities
• With the poorest health
• Who are 'hard to reach'

Two consultees further suggested the panel should be developed in collaboration with the Dialogue Youth Initiative and the Scottish Youth Parliament.

One NHS Board welcomed the use of different approaches to seeking views depending on age and cognitive understanding of the child.

Views of Children and Young People

This action stipulated that the view of children and young people should be invited for all services that they might use including every level of planning (national, regional, board, community, health partnership, GP practice and hospital). In response, two consultees mentioned the need for extended advocacy, with one Educational Establishment suggesting using an advocacy agency when children cannot be involved in the process. A Local Authority added that Action 76 will also be required to be taken forward by local authorities as they are leads for community planning. Additionally, an NHS Service Provider believed the views of those parents of mentally impaired children and young people should be sought. One endorsed this statement stating:

"Views of children and young people with diverse range of special needs should be sought throughout the system" Royal College

Finally, in respect of the wording of this action point one Public Body was concerned that the wording of Action 76 is "very vague" and gives no indication of a structured approach being taken to the involvement of children and young people at every level of planning.

Children and Young People's Heath Support Group - Status Report

"I very much welcome the work to be undertaken under Action 77… I believe the outcome of this will have a clear impact on Action 76"
Public Body

In relation to Action 77, the following suggestions were provided:

• Systems of involvement that are developed must be done in conjunction with existing mechanisms and structures and not done as a stand alone activity;
• Should include mapping of what is currently available so there is an evidence base;
• Needs to be an action point about consulting with carers.

Provision of Information on Rights

In terms of this Action, the majority of responses from consultees illustrated examples of best practice. For instance, work has already been undertaken in this area by Local Authorities, the Voluntary Sector, Children and Families Social Services and Children's Rights Department. One consultee stressed "There is the danger of inconsistency and duplication of the information provided" and further noted that a project of the Scottish Consumer Council, Health Rights Information Scotland had very recently developed two information leaflets for children and young people under 16 about their rights. The same consultee recommended a more coordinated approach which would ensure consistency in the information provided, effective dissemination of material, regular revision of it and the full involvement of children and young people in the whole process.

Review of Provision of Paediatric Services by NHS Boards

Of the three consultees who commented in response to this action point, one NHS Board mentioned "The Charter is not known".

An NHS Service Provider recommended that partners involved should include the Local Authority for practical and financial support as well as access to benefit entitlement for longer term situations and another consultee would prefer the word 'children's as opposed to 'paediatric'.

Service Support for Parents Far From Home with a Sick Child

"How families are supported is vital" explained one Individual Professional consultee. This was endorsed by several other consultees who each made one comment:

• A recent parent of a sick baby felt the accommodation and support were good;
• This is particularly important for Orkney as a remote and rural area with key transport links by ferry and plane. Distance impacts on children, parents, extended family and also carers and long term respite/support;
• The use of voluntary agencies to support parents away from home should be promoted;
• The specifics should be taken into account and mentioned in the Framework i.e. who coordinates support when families are far from home with a sick child?;
• Parents report that they often lack information prior to the child's admission to a distant hospital. It is vitally important both in planned and emergency admissions that information provision is coordinated and that specific information is provided e.g. finance, transport, accommodation and meals, parking charges and education of child in hospital.

General comments on actions

General comments relating to the actions were provided by consultees.

An area in which a number of consultees raised points related to children and young people with special needs. The overall opinion was that there should be an acknowledgement of the need to work with specific groups who may require additional support/advocacy e.g. looked after and accommodated children or children with special/complex needs, and that the requirement of the carers should also be acknowledged. One Local Authority suggested a "National Transcription service is required for hearing and visual impaired to ensure full involvement" and one Voluntary/ Charity agency advocated for the involvement of people with autistic spectrum disorders .

The importance of training in facilitating the involvement of children and young people in health consultation was highlighted by a few consultees:

"I would recommend the inclusion of an action on training and preparing the workforce for involving children and young people in the development of health care and services"
Public Body

"Staff need to be trained and equipped to understand and interact positively"
Voluntary / Charity

In relation to Actions 75-80 two consultees (both Public Bodies) were of the opinion that there is an emphasis on the term 'should' and suggested replacing this with the words 'will' or 'must'.

Finally, several consultees mentioned numerous bodies and agencies who they believe should be involved or who are involved in the whole process, for example:

• Local Authority Education Department
• Local Authority Youth Services
• Dialogue Youth Initiative
• Young Scot Programme
• Speech and Language Therapists

Two of the same consultees also suggested that the consultation document should have mentioned current examples of good practice

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