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Annex 3: Executive Summary - Public Engagement Report - May 2007
Rocket Science was commissioned by the Scottish Executive Health Department to engage with parents, carers, children, young people and health care professionals to understand their views about specialist children's health services in Scotland and how the services could be improved.
This report provides:
- The context in which the engagement was commissioned and undertaken
- The views of parents, carers and health care professionals in relation to 5 key identified areas
- The views of children and young people on their experiences and suggestions for future development
- A summary of key findings
Context
The Scottish Executive established the Children and Young People's Health Support Group ( CYPHSG) in 2005 in response to a number of key recommendations made by Professor David Kerr's review of the NHS in Scotland in relation to child health. Specifically the Executive asked the CYPHSG to carry out an in-depth review of specialist children's services in Scotland. A NSG, chaired by Malcolm Wright, Chief Executive of NHS Education Scotland, and a project team was established to lead the activity. This group will ensure the actions in relation to specialist services are implemented and will produce a 'National Delivery Plan for Specialist Children's Services in Scotland'. This public engagement is a first step in broader involvement in this work and was intended to inform the development of the delivery plan.
Methods
Ten 'general' public engagement events were held across Scotland, catering for all constituent groups. We also organised targeted events to increase participation: 3 children/young people events, 1 health professional event and 1 parent/carer event. An electronic survey was established to provide an opportunity for those who could not attend events to submit their views.
Findings
The public engagement events for parents, carers and health professionals were organised around five key areas: workforce, accessibility of services, age appropriate care, models of care and future trends. The issues below are a summary of some of the main discussions and views of participants.
Workforce
- Multi-agency working is becoming increasingly important and beneficial. This approach would benefit from explicit guidelines for allocation of a lead professional or key worker role.
- The general trend is for health professionals to progress along specialist training routes; this has particular implications for rural areas where the population size is too small to support a specialist service.
- The further development of communication skills for working with children and young people was suggested as a priority.
- Parents required greater consistency in service and improved communication from health care professionals.
Accessibility of services
- There is a need to deliver health care around children and families. Parents whose children have complex needs often find their own lives degenerating as a result of their child's condition and they want improved support from services.
- Participants acknowledged some element of travel and that support for the logistics of this travel could be improved. It is hoped the development of community outreach clinics will make tertiary services more accessible in local areas.
- Parents and carers feel GPs have too much of a gatekeeper role around access to services. Some felt they had to fight for referrals due to lack of staff resources.
- Flexible appointment would be preferable to fixed times and that too many services only offer 9-5 appointments.
- Hospital facilities for some parents and carers were reported to be poor.
- Many parents and carers do not follow the procedures due to lack of knowledge about how they work.
Age appropriate care
- The contrast between children and adult services is quite stark with less support in adult services. Different transition ages may be appropriate for different conditions
- There are issues regarding paediatric specialisms which do not have an adult counterpart.
- Children's services taking on older children will have significant impact on resources.
- Older children have different needs to younger children and there are extensive arguments for specific adolescent units.
- Services currently cannot cope with palliative care for children, especially those with learning disabilities.
- Educational provision for children in hospital is very patchy.
Models of care
- Major issue is the level at which specialist children's services should be planned and commissioned.
- Joint care pathways should be established across health board boundaries to exploit expertise.
- It was noted that Community Health Partnerships are attempting to take services more local while there is growing recognition of the need to plan nationally.
- One single NHS for children in Scotland was suggested.
- Current managed clinical networks include only NHS professionals; it was suggested these should also include social work and education services.
- Services do not share information with each other around particular issues.
- The variability of services across Scotland is a significant issue
Future trends
- Children with more and more complex conditions are surviving into adulthood, but participants thought that the health service was not doing enough to anticipate increased future demand
- Participants felt that there is an expectation from professionals that parents and carers will just carry on caring as children move into adulthood, without acknowledging that proper support is required to fulfil this role
- Participants agreed that care should be about local access, and hospitals should be the last place for children to end up
- Participants hoped that more streamlined IT means that services will be faster, cheaper and easier to deliver.
- Participants agreed that there needs to be a focus on prevention rather than cure, particularly for conditions which are costly to treat when they reach an advanced stage.
- It was felt that Scotland's changing population is an issue, both in terms of the numbers of children, as well as where their parents are from.
- Participants felt that some families have greater, sometimes unreasonable, expectations and beliefs around entitlement to care
- It was hoped that scientific knowledge of particular conditions would improve in the future, to meet the needs of children with rare or complex conditions more effectively.
Views of children and young people
The engagement with children and young people revealed:
- Consistency in view on positives and negative aspects of their experience of using specialist children's health services.
- Good experiences included care given by staff, being visited by friends, support to keep up with school work and being provided with entertainment and activities.
- Bad experiences included feeling intimidated by doctors, feelings of isolation, painful procedures, boredom and appointment waiting times.
- Having to use specialist services had a big impact on the majority of participants; this usually related to the amount of time people had to spend in hospital and the type of treatment required
- There were mixed views of the age-appropriateness of services: some felt they were too childish, others felt they were 'just right'. Most acknowledged it became more difficult for teenagers to be mixed with young children.
- Very few young people reported 'never' having a say in decisions that affect them with the majority stating this happened 'sometimes'. Many felt they had been 'told what's going on' but not necessarily involved in making decisions.
- Many young people felt that health professionals should communicate at a level more appropriate to the age of the patients.
- Mixed views on extent of involvement in design of services with some young people extensively involved due to local initiatives and others experiencing little or no involvement.
- All involved had opinions on how to create the 'ideal' service and expressed a desire to be involved and consulted on future plans and how to make improvements to the hospital experience.
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