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CHAPTER SIX: HEALTH SERVICES FIT FOR CHILDREN AND YOUNG PEOPLE

The chapter 'Health Services Fit For Children and Young People' within the consultation document highlighted a number of implications for the provision of healthcare for children and young people. The implications, which must be clearly identified and understood if they are to inform the actions and priorities of healthcare providers, were set out under the following headings:

• Promoting health and well being;
• Balancing access, quality and sustainability;
• Developing the workforce;
• Reflecting patient focus;
• Ensuring performance management and quality assurance;
• Information technology.

6.1 PROMOTING HEALTH AND WELL BEING

Paragraphs 65 - 69 focussed on the need for health promotion for children and young people. The need for having a sustained and concerted effort to foster the health of children from birth (and before) was recognised. This is to be achieved by having Integrated Children's Service Plans allowing all healthcare providers to engage and work with other local planning partners and with children and families to agree and implement a shared agenda focussing on improving the quality and integration of local services which in turn will influence child health and well-being. The final section examined the need to ensure that parents and carers are fully informed in all aspects of health care and health promotion. This will shape their role in determining the long term health of children and young people. Services involved in all aspects of providing healthcare for children should be able to aid parents in helping them promote healthy habits and behaviours in children and young people.

Sixty-eight consultees responded with comments on the proposals outlined under this section. All comments were supportive of the points raised and proposals stipulated. The following quote from a Public Body illustrates the overall theme that emerged.

"This is an important area to address for children of all ages and will clearly have an impact on the future generations of adults. Progress in this area will also have a significant impact on alleviating the burden on healthcare provision."
Public Body

Five consultees agreed for the need for health promotion in the early years of a child's life. An NHS Service Provider consultee wrote that, "health improvement begins even before a child is born and we would suggest that this should go further back to before conception."

The role which parents, family members and carers can play in shaping the future health of a child was widely acknowledged, and one Local Authority consultee felt that "Paragraph 68 is the most extensive paragraph throughout the Framework on the role of parents." They go on further to question if this is sufficient given that parents are ultimately one of the key determinants of a child's health in terms of lifestyle patterns.

Those who made reference to the role which parents and carers can play in shaping the future of children and young people's health, largely felt that more emphasis should be placed on what parents and carers could do. As one Individual (Professional) highlighted, "More reference could be made to the role of parents in terms of children and young people learning together about health in paragraph 69."

In terms of prioritisation, a Voluntary / Charity Body believed that paragraph 69 should be where paragraph 66 is placed which would put the role/ emphasis/ importance of the family at the top of the list as opposed to being last on the list. A Local Authority commented further by suggesting that the word 'role' should be changed to read 'responsibility'.

In contrast however, a Local Authority consultee made reference to paragraph 69 by stating that, "Parent's ability to take on this role will also be dependent on their priorities and circumstances". Additional measures and consideration was thought to be necessary by an NHS Service Provider "regarding the majority of the population who do not engage with health services." Furthermore in reference to paragraph 69, a Local Authority felt that this should "reflect the Parental Involvement Bill currently before Parliament."

The importance of mental health and well being for children and young people was mentioned as something which should be included within this particular section of the consultation document by 2 consultees. The following quote helps to illustrate this point:

"The focus in this section is on preventing ill-health rather than the promotion of health and well-being. This section could be 'opened up' to include the importance of mental health and well being through looking at the 'whole child' approach."
Local Authority

Concerning the subject of funding, 3 consultees raised questions as to where the funding would come from in order to fulfil the actions set out within this section of the consultation document. A further 3 consultees felt that there should be more reference, within this section, on:

"…accident prevention and trauma deaths. This is the biggest cause of childhood death in Scotland and needs to be specifically targeted. This omission is unfortunate and should be corrected."
NHS Clinical Group

"Trauma and accidents are one of the major causes of morbidity in children. There is little evidence within the report of what health can do to address this issue."
NHS Service Provider

Three consultees referred to the role that education at school can play and that this should be placed with equal importance alongside the role of parents, carers and all healthcare providers. Making direct reference to paragraph 68, a Local Authority wrote that:

"Paragraph 68 refers to the Children's Services Plan as a key vehicle for progressing health activity and this is repeated at various points throughout the document. There is not enough reference made however, to community plans and the joint health improvement plans which are the key strategic partnership plans in relation to health improvement at a local level."
Local Authority

6.2 BALANCING ACCESS, QUALITY AND SUSTAINABILITY

The key focus of paragraphs 70 - 75 concerned the provision of healthcare services which where possible are local, meet the needs of the children and young people, while maintaining service quality and minimising the disruption and stress that can be caused to a child or young person when undergoing treatment at a hospital geographically distant from their home.

This area of the consultation prompted responses from 55 consultees. It was widely acknowledged that there is a need to provide good quality care at a local level. It was also recognised that services do require to be integrated where possible and that where centralisation is necessary, the disruption to children and young people (including their families) should be minimised.

"Centralisation of specialist services is necessary to ensure quality services. This section should draw on the attention to the need to ensure that access to centralised services is equitable. Health inequalities in physical access to move to more distant services needs to be addressed."
Individual (Professional)

Many of the consultees recognised that local access to paediatricians is often surrounded with difficulties and a Professional Body raised the suggestion that, "We need to be able to appropriately skill primary care colleagues in paediatric issues". Another Professional Body wrote that the issues of rural Scotland need to be more specifically addressed - "there is a lack of accessible CAMHS services for onward referral to more centralised services." A Local Authority consultee also addressed this issue by commenting on the challenges that face island communities when delivering services locally.

There were a few mentions that the actions highlighted and proposals suggested within this section, placed too much emphasis on hospital based care and noted the need to address other primary care services such as doctors and dentists.

"There seems to be too much emphasis on hospital care. There is no mention of flexibility of provision. How do we balance local services and access to community health services with regionalisation of acute/ hospital services?"
Local Authority

"These paragraphs provide a very medical doctor focus when in fact challenges exist for many others in the multi-disciplinary team throughout the patient journey."
Royal College

The consultation document noted that integrating and centralising services in areas is necessary and inevitable. However, a number (10) of the consultees voiced their concerns that transport facilities need to be taken into consideration and addressed accordingly. One Local Authority consultee noted that, "when building new children's hospitals, consideration needs to be given to transport, as some of the families will rely on public transport". An NHS Board recognised that transportation is a particular issue in their area and highlighted the need for investment so that Community Health Centres can deliver diagnostic and day-care treatment for children and young people. In addition to these comments, an NHS Board highlighted that:

"The importance of transport and joint working between the Local Authorities, Health and Transport providers when planning transport needs to be flagged up here. (The most frequently raised issue in most public consultations on health services is transport and planning)."
NHS Board

A Professional Body stated that:

"When services are not delivered locally, one of the biggest concerns of families is transport to and from the hospital and there needs to be an easy mechanism for families to receive financial recompense when required and this should be acknowledged and national guidance produced."
Professional Body

The issue of parents being reimbursed was mentioned by 1 consultee who referred specifically to parents of children with complex needs who experience frequent admissions and prolonged stays in hospital, by stating that, "Financial help through the benefit/ DLA systems to be considered to minimise financial impact/ employment stress. More viable than moving specialist services out of central locations".

Two consultees raised their concerns on other subject matters. One NHS and Management Strategy Group noted that the "willingness of the NHS Boards to work regionally is variable". Another concern from an NHS Service Provider consultee related to specialist services tertiary services, "we do have concerns regarding the changes occurring, particularly around specialist services tertiary services. Every effort should be made to ensure that children only need to remain in these centres for those aspects of their care that cannot be delivered locally".

Finally there were mentions from 4 consultees in relation to providing good quality services as the following quote from an Individual (Professional) illustrates, "Need to promote good quality services by improving links with tertiary services, use of managed clinical networks, out-reach and in-reach services to and from tertiary centres where appropriate. Another Individual (Professional) was in agreement stating that, "I agree with what is in this section but would add that involving children, young people and parents/ carers in planning local and tertiary/ secondary services is essential." In addition to all the points that were raised within 'Balancing Access, Quality and Sustainability', a Voluntary / Charity consultee stated that, "Alongside these issues…..goes the need to provide clear quality, timely information to parents, children and young people about the distant clinics/ hospitals. Information can be a very powerful tool for parents and is proven to improve their coping mechanisms".

6.3 DEVELOPING THE WORKFORCE

Within the consultation document, it was recognised that a number of workforce areas require specific training. It was also recognised that there is a far wider range of staff across clinical disciplines who may be required to provide care to children and young people and that often this is more profound in rural parts of the country but is still relevant nonetheless in urban areas as well.

Overall, the need was recognised that all staff concerned should be adequately supported by the provision of appropriate training packages that address key clinical skills which are unique to the care of younger patients.

The consultation document also noted the need for existing models of care to be re-examined alongside new ways of working, which includes role development and multi-professional agency working as the way forward.

Eighty-one consultees made comments in relation to 'Developing the Workforce'. A large number (61) raised concerns or pointed out additional areas which should be included. For example, one Local Authority stated that, "we agree in principal but feel unable to comment on specific professional health posts. We fully support the value of joint training for multi agency staff". One Professional Body consultee wrote, and, "This section provides a comprehensive and stark picture of the challenges in developing the workforce".

In the main, the key themes that came out from the consultees were:

• That other valuable groups were being overlooked;

"Although there is some reference to social work and early years professionals, the section is weighted toward health professionals. It would help if there was more work done on the role of workforce in the voluntary sector, the early years and of school staff."
Local Authority

"Paragraph 78 might cover the wider skills agenda if medical (hospital and non hospital) was inserted."
NHS Management and Strategy Group

"The emphasis on medical consultants needs to be balanced by including information on other professional groups and by considering the issues of appropriate skill mix. Applied psychologists are not mentioned in this section and we feel it is important to emphasise that clinical psychologists also have a consultant grade."
Professional Body

• That a current lack of resources might hinder the plans;

One Local Authority consultee pointed out that, " NHS does not at the moment have the resources to meet statutory requirement. Negative effect of short-term funding". Further to this, an NHS Management and Strategy Group also made reference to funding, "Need to consider the national and local resources that are available in order to effectively implement this".

A Professional Body who was encouraged by the mention of AHPs noted that it is, "important to highlight that some of the smaller professions, for example, paediatric dieticians are under resourced". Concerns over sustainability were also highlighted by 12 consultees, as the following quote from one NHS Board illustrates, "Problems sustaining the tertiary workforce has often impacted negatively on secondary care as it may be the same staff who deliver both parts of the service", while another NHS Board raised a concern over the length of time these proposals may take to implement.

• The length of time it would take for this to be implanted;

"The length of this section and the size of the gaps in the workforce quoted emphasise that the children's workforce is a significant rate-limiting factor in achieving the action plan. This section serves to underline the real practical difficulties in achieving the current timescales - workforce development on this scale is a time consuming process."
NHS Board

• The lack of people working within relevant sectors

There was recognition from some consultees that the current workforce is understaffed or has the potential to become understaffed in the near future. The following quotes help to illustrate the range of comments which were raised in relation to this:

"It is important that there are sufficient support staff and infrastructure to allow clinical staff who already possess key clinical skills to fully utilise these skills and not be taken away to carry out non clinical duties/ tasks."
NHS Board

"When planning AHP, services need to consider the number due to retire and how to replace people with lots of expertise."
NHS Clinical Group

6.4 REFLECTING PATIENT FOCUS - AGE APPROPRIATE SERVICES AND ADVOCACY

Within this section of the consultation, it was recognised that the physical, social, emotional and cultural needs of children and young people differ greatly from those of adults. In both 'Delivering for Health' and 'Building a Health Service Fit for the Future' it had been stipulated that there is a need to provide care for children and young people in age appropriate environments.

This Action Framework acknowledged that although a child is defined as a person under the age of 18, many paediatric facilities in Scotland mainly focus on children under the age of 13 or 14 thus differing from countries such as England, North America, Australia and much of Europe where children's hospitals admit children who are 16 years of age or older. 'Delivering for Health' welcomes the age limit in Scotland moving to 16 with additional flexibility and choice for those aged 16-18. The transitional needs that are going to be required from services working within the health sector are laid out within this section of the consultation document.

Seventy-four consultees expressed their opinions on the actions laid out within paragraphs 87 - 92. All consultees welcomed the proposals in some form or another, although 20 chose to express their concerns on the effect these may pose upon various health related sectors. Over half of the consultee responses (54) were in direct agreement with the points covered in the consultation document as illustrated by the following quote from an Individual (Professional), "Adolescent and transitional care has been a relatively neglected area".

Another NHS Board noted, "We support the shift in the age threshold for admission to 16 with choice for 16-18 year old and the higher threshold for mental health patients accompanied by the possibility of some shift in resources from adult to the children and young people's service where this is achievable".

In contrast to this, one Public Body disagreed with paragraph 88 where it was stated that the Children (Scotland) Act 1995 defines a child as someone under the age of 18. This particular Professional Body felt, "This definition does not apply to all the provisions within the Act. See definition at section 93". Furthermore, a National Management and Strategy Group consultee felt that, "This section duplicated some of page 14 (Protection and Advocacy)", while another, an NHS Management and Strategy Group felt that, "It would be better to separate age appropriate services into a section on its own".

Five consultees made reference to the fact that although they agreed with what was stipulated within the consultation document, there was a need to ensure 'flexibility' in this approach. The following quote from a Public Body illustrated this point:

"I am concerned with the impact age appropriate services will have on young people aged 16-18 years and whether the emphasis on flexibility and choice for them will become a reality. There is a danger they will be encouraged and pressured into not using paediatric facilities but for some an adult health setting will be unsuitable."

A further five consultees raised concerns over the resources that are going to be required in order for these proposals to be implemented successfully, with one NHS Management and Strategy Group keen to voice their concern that increasing the age to 16 will create significant financial challenges for the Boards. A Professional Body further hoped that the necessary extra finance and resources would be recognised within increasing the paediatric age group to 16. A Royal College made reference to the fact that, "The development of transition services may need new resources".

One Voluntary / Charity who fully endorsed the ideas represented within this section of the consultation document was also keen to highlight that it would, "be important not to lose sight of the separate needs of the adolescent group and even the other age and gender differences which may become an issue with raising the age limit". The main issue for one Local Authority in relation to the proposals concerned, "the fact that agencies operate on the basis of different age limits is problematic and makes joint working more difficult", while another Local Authority felt that, "Notes should be taken of good practice involving young people, e.g. Scottish Health Promoting Schools Unit Pupil Participation and Scotland's Commissioner for Children and Young People Keeping Promises".

On the subject of good practice, an NHS Management and Strategy Group consultee stated that:

"Allowing real choice and involvement for children and young people is a challenge and we would welcome the sharing of good practice on the most effective ways of doing this."

6.5 ENSURING PERFORMANCE MANAGEMENT AND QUALITY ASSURANCE

A key challenge for NHS Scotland is to develop quality assurance and performance management measures both within the NHS and within children's services partnerships that drive measurable improvements in health outcomes and health care for children and young people. Paragraphs 93 - 102 of the consultation document set out the context of 'Ensuring Performance Management and Quality Assurance'.

Sixty-two responses were received in relation to this section, and in the main, consultees welcomed the development of a national integrated Quality Improvement Framework. There were, however, some consultees who raised concerns over areas they felt required to be addressed and the following themes emerged:

• Clarity required in specific areas within paragraphs 93 - 102 (6 mentions);
• Both quantitative and qualitative indicators should be required (3 mentions);
• The specific indictors required for children need to be highlighted (7 mentions);
• Performance management requires to be simplistic (4 mentions).

One Education consultee felt there should be a greater clarity as to the role of Quality Improvement Scotland within the agenda being set out, while an Individual (Professional) was more concerned with how one would ensure that things which are being measured are in fact important and not just measurable. Still on the subject of 'clarity', another Individual (Professional) felt that, "there needs to be greater clarity as to what is being asked of health services with regard to those indicators relevant to children that have not been included in the HEAT targets but are still expected to be assessed.", and another Professional Body felt that there should be clearer performance indicators for acute healthcare.

In terms of measurability, 3 consultees made reference to the need for both qualitative and quantitative indicators as illustrated by the following quotes:

"Indicators require to be quantitative and qualitative, providing a measure of performance and quality in relation to children's services"
Local Authority

"Focus on quantitative indicators in adult's services does not necessarily apply to the same degree for children, although waiting lists are important. Mention needs to be made to the importance of qualitative indicators."
NHS Board

A further four consultees suggested that simplification in certain areas is required as the following quotes illustrate:

"Paragraphs 93-102 do little to aid the understanding of this process. It would help if this was simplified in a language that all partners would understand."
Local Authority

"We would advocate any performance management frameworks and inspections should be as simple and joined up as possible."
NHS Management and Strategy Group

Seven consultees were keen that the specific performance indictors that would be required for children and young people should be illustrated. A Professional Body recognised that there is a need for specific indicators for children and young people which recognise their different needs. An NHS Service Provider mentioned more specifically that, " HEAT targets need to be in place". However, in contrast to this a Royal College was concerned that performance measures will only be useful to help understand why poor performance occurs in the first place. Furthermore, a Voluntary / Charity felt that, "The Quality Improvement Framework for Integrated Children's Services should provide such quality assurance measures in relation to partnership working. There is a significant danger of separate layers of targets and performance measures". One NHS Board agreed that targets within HEAT are useful to focus activity at a local level however they felt that, "they should not be the only driver".

Individually, a number of concerns were raised. A Professional Body wrote that, "We are concerned that the Action Framework seems to treat CAMHS as the poor relation which is playing catch up. Although the Framework recognises that CAMHS services need addressing, we hope that the leaving of CAMHS 'behind' doesn't reflect an ethos/ attitude in NHS Scotland that needs addressing". In relation to the inclusiveness of the content of the paragraphs, an NHS Management and Strategy Group felt that:

"This section covers the various approaches to performance Management and Quality Assurance, but does not indicate how they will be harmonised to prevent measurement and inspection overload."
NHS Management and Strategy Group

6.6 E-HEALTH

Information gathered in relation to children's health is collected at various points throughout their life and it is known that this information is often disjointed and is of variable quality. The Action Framework highlighted the need for integration and information sharing. NHS Scotland should already be working towards a single integrated system, but within 'E-Health' it is recognised that in the first instance there are a number of systems which can be brought together or interfaced. Recent interest in child protection issues has forced multi agency information sharing to the top of the political agenda.

The 'E-Health' section within the Action Framework highlighted that it is also necessary to ensure that information technology used in respect of children and young people's supports patterns of information management. The concept of telemedicine has also been highlighted as a requirement in order to meet the challenges that face those working within healthcare services in more remote and rural areas of Scotland.

Seventy-nine consultees provided comments in relation to the actions stated within the 'E-Health' section of the consultation document. The subject and proposals surrounding 'E-Health' were greatly welcomed with all of the consultees in agreement at least to some extent. The following quotes illustrate the wide range of positive comments made:

"A common information and communications technology ( ICT) system is essential if NHS Scotland is to deliver the integrated care services which we require. Healthcare providers around the world recognise the opportunity for faster, safer, more efficient and more patient-centred services that ICT offers."
NHS Board

"Electronic records and the use of telemedicine are seen as very positive improvements to the present situation and may be achievable once we have access to compatible technology systems."
NHS Management and Strategy Group

"This will be vital if the specialist expertise is to be maximised for the benefit of all children and will support the delivery of local access."
NHS Management and Strategy Group

Another NHS Management and Strategy Group, although largely in agreement with the key action points laid out, suggested that they "would wish to see much greater emphasis laid on the importance of information for children, particularly in relation to the need to share information to enable the Integrated Assessment Framework and to ensure effective child protection".

Placing more emphasis on this section within the Action Framework was requested by 2 consultees. One Individual (Professional) consultee however, raised the point that, "The development of technology in the NHS has some way to go. There is a need to develop integrated information systems to allow clinicians across the patient pathway access to diagnostic results and clinical notes". While another Individual (Professional) felt that, "Realistically it will be years before all systems come together".

One consultee from an NHS Service Provider had concerns over access to ICT:

"At the risk of sounding like luddities, there is some concern about the use of electronic records etc, since there is not universal access to quality ICT facilities for many medical staff. Further, there is a clear need, especially in teaching hospitals to make computer programmes and equipment to be compatible for users of either the university or NHS staff."
NHS Service Provider

Eight consultees highlighted an urgent need for resources/ investment in this area if the proposed 'E-health' agenda is to be successful and sustainable. For example, an NHS Service Provider wrote, "We appreciate the financial resourcing issue and feel strongly that this must be a priority of the Scottish Executive in order that there is effective delivery". While another NHS Service Provider commented that, "There should be some mention of adequate resource".

The requirement for sharing information was of particular importance to 4 consultees and one Local Authority was keen that:

"If the CHI number is to be a unique identifier for each child, we suggest other agencies are also allowed to use this number e.g. Local Authorities, as this would simplify data-sharing."
Local Authority

Another Local Authority consultee felt that, " NHS protocols need to move to allow shared information on a need to know basis", although an Education consultee felt that, "not as yet problem free; National guidance on the use of sensitive data going by email i.e. discharge letters, records etc". Furthermore, another NHS Service Provider agreed that, "The use of IT solutions to allow sharing of information between departments should be encouraged. This would allow for a more consistent approach, ensure that all professionals have accurate information and make life easier for patients". Concerning data protection, a Professional Body wrote, "The need for confidentiality is fully understood and is an important component of our Code of Ethics".

Telemedicine was mentioned specifically by 9 consultees and in a positive light by 7 of these as the following quotes from 2 Professional Bodies illustrate:

"We fully support the development of telemedicine as a means of access from remote areas to expert opinion. It is also an educational tool, providing the means for peer review and conference."

"The development of telemedicine is essential to support the continued delivery of remote and rural care in particular the crucially ill child."

For the two consultees who were less positive on telemedicine, a Local Authority consultee wrote that, "The role of telemedicine is not unique to children, so it makes little sense to include a section on this." A Professional Body consultee stated that, "Telemedicine needs to be developed for delivering training as well as elective/ emergency care to remote and rural areas. The difficulty can often be that major cities cannot provide video link to seminars and conference events".

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