Scottish Government

EXECUTIVE SUMMARY

Context

The development of the National Delivery Plan for Children and Young People's Specialist Services in Scotland ( NDP) is a key element of the Scottish Government's overall approach to improving the health of this vulnerable group. The publication of the draft NDP on 4 March 2008 was the latest stage of a process of review and engagement with key stakeholders with the aim of improving the delivery and development of children and young people's services throughout Scotland.

Following the publication of the NDP, there was a three month process of consultation to gather views of all relevant stakeholders on the content, recommendations and timescales contained within it. This report presents a summary of the feedback received from professionals, parents, carers, children, young people and their representative groups.

The Children and Young People's Health Support Group ( CYPHSG) has been asked to continue to oversee the implementation of the NDP as part of the overall process identified in the Best Possible Start section in Better Health Better Care.

Methodology

There were a wide-range of opportunities provided for individuals and groups to respond to the consultation, through participating in events, focus groups, surveys and submitting written responses. The detail of the consultation process is outlined in the table below.

Key findings

Overall findings

It would be fair to say that most of the proposals and recommendations contained within the NDP have the support of those that took part in the consultation. It appears that the issues facing specialist children's services in Scotland have been accurately represented and covered. This is perhaps due to the breadth and depth of stakeholder engagement that the National Steering Group for Specialist Children's Services undertook in the years leading up to the publication of the NDP.

Much of the feedback from the consultation process relates to the detail of the implementation of the proposals in the NDP. Particular concerns relate to:

• The allocation of resources and how the proposed changes will be funded;
• The accountability of the structures associated with children and young people's specialist services;
• The challenges of successfully implementing staff training and development programmes; and
• How achievable some of the timescales contained within the NDP are.

Development of the National Delivery Plan

The majority of people were strongly supportive of the recommendations which related to the need for the Scottish Government to review the process for the provision of aids, adaption and equipment for children and young people with specialist health needs, and to consider the financial implications for children, young people and families in dealing with complex health conditions.

Most people considered that the NDP sufficiently described the key challenges for specialist children's services. While specifically excluded from the NDP, many people highlighted concerns that Child and Adolescent Mental Health Services ( CAMHS) were facing serious challenges, and the previous review of this service area was not yet having an impact on improving services. Aside from this, a small number of responses highlighted challenges faced by particular services, including: epilepsy; Paediatric Gastroenterology, Hepatology and Nutrition ( PGHN); Inflammatory Bowel Disease ( IBD); audiology; diabetes and neuro-sciences.

Many people thought that the NDP should more explicitly acknowledge the challenges related to the workforce (including recruitment, retention, working hours constraints, human resource planning and the need for trained specialist staff especially in the more remote locations). Additionally, a high proportion of responses made some reference to the need for improved planning, co-ordination and management of services for any changes that might be introduced.

The need to improve multi-disciplinary working was also a common challenge raised throughout the consultation, and some people thought that this should be more explicitly acknowledged in the NDP.

Priority actions

Overall, respondents were supportive of the recommendations in relation to children's cancer services proposed in the NDP. The number of objections or suggested alternatives was relatively small. However, some respondents indicated a preference for a one or two Principal Treatment Centre ( PTCs) model. The challenge of staff recruitment and retention across a larger number of PTCs was a common issue raised.

Most of the responses received in relation to Cystic Fibrosis services were in agreement with some or all recommendations. Multi-agency involvement and multi-disciplinary teams were considered particularly important for Cystic Fibrosis services.

Around two thirds of the respondents agreed with the approach being proposed for Inherited Metabolic Diseases, although some felt the issue was not covered in enough detail and made additional suggestions or amendments.

The funding of a new consultant post for Paediatric Rheumatology was widely welcomed, however many requested additional resources, including investment in additional Allied Health Professionals ( AHP) and physiotherapy services. Many also commented on the need for outreach and local service provision.

Many respondents said that they were in broad agreement with the recommendations proposed on the provision of general surgery of childhood. The recommendations on training were specifically supported in many responses.

The majority of people consulted broadly agreed with the proposed priority actions. Some suggested additional services for inclusion, including: Emergency Care, High Dependency Care, Paediatric Anaesthesia, Child Protection, Radiology and other surgical specialities (including Orthopaedics, trauma, Ear Nose and Throat and Ophthalmology).

The role of networks

Overall, consultees were supportive of the principles of the recommendations related to the role of networks, but felt that the lack of sufficient detail about implementation prevented whole-hearted agreement.

Many people highlighted the benefits of the managed clinical network ( MCN) approach, including supporting the consistency of services across Scotland. There was strong agreement with the need to strengthen and develop the network support infrastructure.

Particular challenges and concerns raised included:

• The need for more clarity on the role of MCNs, particularly in terms of their accountability and relationships with other structures;
• The need for MCNs to be supported by effective Information Technology ( IT) systems;
• The need for the NDP to more explicitly acknowledge the potential to involve a broad range of NHS staff and other agencies in MCNs, and consider the potential role of parents, carers, children and young people in service development; and
• The barriers which prevent staff being able to engage effectively in MCNs, including finding time to participate, involvement in multiple networks and cross-boundary working.

Consultees broadly welcomed the idea of Managed Service Networks ( MSNs), and suggested it could help link networks more effectively to the planning, commissioning and delivery of services. Many indicated they would be interested in seeing this concept developed further.

Participants were generally supportive of the recommendations to invest and develop the paediatric telemedicine infrastructure. Many highlighted the benefits telemedicine, including: reaching remote and rural patients, sharing knowledge and expertise, and assisting with clinical assessment and diagnosis. It was noted that the principle current weakness of the telemedicine infrastructure was the lack of available IT support to enable it to be used effectively.

Planning and commissioning

Overall, the proposals to create clear structures for planning and commissioning specialist children's services were welcomed. However, many participants were concerned about the practicalities of implementing the recommendations, and were eager to have more clarity in relation to:

• The detail how formal structures would operate;
• The specific responsibilities throughout the planning and commissioning structure, from NHS Board level upwards;
• The accountability of regional planning groups; and
• How resources would be allocated for local service delivery.

Some people suggested that the requirement for integrated working should be made more explicit in the NDP to encourage better integration with a wider-range of in-between and universal services in the future

The additional £32m investment from the Scottish Government was well received, but many requested clarity on the process for allocating this.

Workforce

Overall, there was a mixed response to the recommendations on workforce issues in the National Delivery Plan. The main themes from the feedback in relation to workforce issues included:

• Agreement that there is a need to improve future workforce planning;
• A concern that some of the timescales in the NDP are unrealistic;
• A need for greater clarity on responsibilities for workforce planning and where resources should come from;
• The need to significantly improve succession planning;
• A concern that there was a lack of time and capacity to participate in training within children's specialist services;
• The opportunity to use staff rotation between hospitals and outreach as a tool to develop skills and experience;
• A need for the advanced nursing and AHP roles to be more clearly defined with the provision of training backed with an increased number of advanced level posts;
• Agreement that the collection and use of workforce data to generate intelligence is critical to the future sustainability of specialist children's services;
• Agreement with the recommendations that workforce plans consider the clinical, psycho-social and developmental needs of adolescent patients, although there were questions as to what this would mean in practice;
• Agreement that remote and rural workforce planning proposed particular challenges which would need to be addressed; and
• Agreement that variances between posts, within and across NHS Boards, should be highlighted and corrected as part of Agenda for Change.

Performance management

There was general agreement amongst participants about the importance of ensuring effective performance management, as outlined in the document, not only for the monitoring of the implementation of the National Delivery Plan but also on an ongoing basis for all specialist children's services to ensure outcomes are maximised. However, while some people simply agreed with the recommendations, there was some debate around the specific recommendations in the Plan.

Some people agreed with the recommendation that the Children and Young People's Health Support Group ( CYPHSG), in conjunction with NHS Quality Improvement Scotland, undertake a programme of visits. However, many people were reluctant to agree that visits would be an effective performance management tool, questioning their purpose, value and raising concerns about the time required to prepare for them.

There was strong support for the recommendation to "…develop a measurable range of clinical outcome indicators that will allow improvements in specialist children's services to be assessed over time." However, many suggested that outcome measurements should include a balance of indicators beyond the clinical, including: experiential, quality of life, social, education, peer contact and positive staff interaction/communication.

There was a common theme across discussions that people would like to see the performance management arrangements for specialist children's services more closely aligned to other existing frameworks ( e.g.QIS frameworks, HMIE children's services inspections, HEAT targets, Single Outcomes Agreements ( SOAs) and Integrated Children's Services Plans).

While some people supported the establishment of a Child Health Collaborative Programme, describing it as innovative, many people were unclear what it would do and how.

There were mixed views on the establishment of a Child Health Alliance. A range of opposing concerns and comments were expressed, primarily around duplication of existing structures. Others felt that developing an Alliance was a good idea that will help to strengthen the connections with service users and the voluntary sector.

Age appropriate care

Overall participants thought that the Plan contained good recommendations in relation to age appropriate care, which adequately covered the key issues. Much of the event discussion and many written responses suggested specific areas for attention which were already highlighted in the NDP, such as the need for appropriate facilities for adolescents and the need to improve the transition to adult services.

The key challenge noted was whether implementing all the recommendations would be feasible, particularly given some of the tight timescales and the resources required for delivering them.

Children and young people's feedback

Specific consultation questions were created for young people, covering some of the main proposals in the NDP which were directly relevant to children and young people. Overall, feedback from children and young people indicates strong support for the recommendations in the NDP. The common themes from their responses include:

• Starting from a good position. Feedback from children and young people indicates they are highly positive about the quality of the care that they have received in the past. This means that the recommendations can only improve on an already highly regarded service.
• Age appropriate facilities for young people are a key concern. Where young people suggest improvements to services, they often relate to making services more appropriate for young people ( i.e. teenagers). Specifically, they would like to see more appropriate entertainment, décor and social environment. The NDP goes a significant way to addressing these concerns in terms of recommending young people have dedicated hospital facilities.
• Appropriate communication with young people is important. The other common concern that young people have beyond hospital facilities is the perceived lack of communication skills some staff have in talking and listening to young people. The NDP includes recommendations on providing generic training in the care of young people, however it is clear that effective communication should be a key part of this as well as the other suggested areas outlined in this section.
• All young people are different and relationships and care should be planned according to their maturity, rather than their age. Young people clearly indicated different levels of desire to be involved in planning their own care and decision making. This highlights the importance of treating young people as individuals, and recognising appropriate transition points and levels of involvement in planning care will vary greatly with stage, rather than age.
• The views of children and young people are important. Children and young people clearly valued being asked their opinions in an accessible and appropriate manner. The NDP could therefore consider how patient feedback can be incorporated into performance management systems in a young-people friendly way.

Parent and carer feedback

While parents and carers did comment on some of the specific recommendations in the NDP, many provided detailed feedback related to their individual experiences of services. Some of the key issues raised by parents and carers included:

• The NDP and its summary were not particularly accessible to parents and carers, and if a final Plan is being produced aimed at parents, it should be simpler and easier to understand;
• There were many experiences of poor co-ordination and inconsistency across services and this was an area which needed to be improved;
• The provision of information and support to parents and carers was often inconsistent, and these inequalities needed to be addressed with pro-active support for families;
• Parents and carers would like to be involved and consulted in order to improve services; and
• Care provided should be related to ability of the child rather than based on age and that adult wards may be inappropriate settings for some young people due to their vulnerability.