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CHAPTER FOURTEEN: COMPLEX NEEDS

The Action Framework stated that 'approximately seven thousand children in Scotland are considered to have complex needs' and this section of the consultation looked at 3 key milestones and 8 actions in relation to care for Children and Young People with Complex Needs.

14.1 MILESTONES

The 3 key milestones related to action in Delivering for Health. Consultees were asked whether they agreed with these actions and a large majority replying to each question expressed agreement.

Named key worker

The key theme to emerge in relation to named key workers was concern over the timescale given in the Acton Framework. Seven consultees felt the timescale was fairly tight with some expressing the opinion that the systems are not yet in place to achieve this; an NHS Clinical Group commented "We agree with the sentiment of all these key milestones, however we feel the systems are not yet in place to meet the timescale for no.29 in particular. We feel it would be unhelpful to raise parental expectation if this timescale is not achievable". Allied to this was the issue of resources and 3 consultees commented on the need to invest in resources or training.

Training needs featured in 2 responses from Voluntary/ Charity Bodies; one felt that the milestone required more emphasis on training while the other suggested key worker training to "ensure a standardised service across the country". This consultee also suggested that key workers have "ring fenced time allocation within a professional's contract to allow this function to be properly managed and not seen as an 'add on'."

One Consultee asked that the role of the key worker be clearly described and another highlighted the need to make sure that publicity materials about the integrated assessment process make clear the role of the key worker. Another consultee requested better guidance on integrated shared assessment. One Professional Body commented "The shared assessment form should also be shared with the dental team as there is greater importance in the prevention of dental disease in specific conditions." Three consultees asked for a clear definition of complex needs to be included in the Action Framework with a Voluntary/ Charity Body mentioning that CCNUK have produced a set of Key Worker Standards, based on good practice and research, which includes a definition.

Gaps in care were identified by 2 Individuals, 1 of whom commented on experience of duplication in services.

Other comments included:

• the need to specify partners for each child;
• recognition that parents can be the key worker and that they need to be appropriately resourced;
• that a health passport would prove beneficial.

As can be seen in table 14.1, below, the majority of those replying at this question expressed agreement with the milestone. Of those disagreeing, the key area of concern was over the ability to meet the timeframe.

Table 14.1
29: Children with complex needs as identified by the integrated shared assessment process should have a named key worker by 2006

Base: All those responding in each category

Effective multi-disciplinary assessment

A small number of comments were made in relation to the milestone on multi-disciplinary assessment and, again, concerns were raised over the timeframe. On this occasion staffing levels were seen (by 3 consultees) as a stumbling block, and this included comment from a Professional Body on "the paucity of community paediatricians in some areas". Three other consultees also felt there may be difficulties in meeting the time scale.

Other comments included two requests for clarification as to when the 10 week period starts and another on who will co-ordinate the review along with what assessment criteria will be used and the need for this to be standardised across Scotland.

There was a suggestion, from a Professional Body, that NES might develop training courses in complex needs care for Primary Care workers. This consultee also felt there should be joint funding initiatives with local authorities and commented that "The development of health supported respite care to augment LA provision has also been shown to prevent unnecessary admission to hospital for these children".

Table 14.2
30: Children and young people with complex needs should receive an effective multi-disciplinary assessment within 10 weeks by 2007

Base: All those responding in each category

Annual multi-agency review

The key theme to emerge in relation to this milestone, made by 2 consultees, was that some children may require more frequent reviews and one consultee felt the wording should indicate that this is a minimum. Two consultees again commented that the timescale may be difficult to achieve, although one Public Body felt that this should be introduced earlier. This consultee also mentioned the need to consider "palliative care services, including hospices and hospice at home services."

Table 14.3
31: Children and young people with complex needs should have an annual multi-agency review of their care needs by 2008

Base: All those responding in each category

One Voluntary/ Charity Body felt the review "should not add to an already committed diary of appointments for families. Annual reviews should sit with existing structures and systems" while a Local Authority commented "The CSP should be driving this process - the review should be the CSP review and not another layer".

General Comments

There were a large number of general responses in relation to the 3 milestones, with 4 consultees commenting on the need to work closely with ASL or that much of the work could be delivered within the existing ASL/ CSP framework.

Consultees identified areas which they felt should be included:

• palliative Care (4 mentions);
• respite Care (2 mentions);
• transitional arrangements (2 mentions);
• technology dependent children (1 mention);
• independent advocacy services (1 mention).

Two consultees commented on the need for funding to rise as the number of children with Complex Care needs is rising. In total 10 consultees mentioned funding needs with 3 suggesting that joint funding should be agreed.

"There is no mention of the funding of packages of care (which remains a key stumbling block in efficient use of resources). Could there be an aspiration that NHS Health Boards and Partners should have in place joint funding arrangements to provide an appropriate level of care?"
Local Authority

In terms of reflecting the wider team involvement, 11 consultees included comments around the need to recognise and develop multi-agency working and this included the importance of information sharing. Specifically, the work being done in schools to support children with complex needs was mentioned by 2 consultees who felt that this should be recognised.

Mention of the need for consistent National Standards occurred in 3 responses. A Voluntary/ Charity Body felt there was a need for an MCN for Complex Needs and a Public Body expressed the view that "The key milestones are all about assessment and review rather than delivery."

There was also a request for clarification over whether children with learning disabilities were included and 2 consultees felt that this would be helpful.

14.2 ACTIONS

The section of the Action Framework dealing with Complex Needs included a set of 8 actions.

Provision of a named key worker

Five consultees expressed reservations about the timeframe. As one Voluntary/ Charity Body noted, "We find this action point to be very welcome as there is significant pressure on families in this situation. However we would question how realistic this time frame is given we are already within it".

The need for clarification of the role of the key worker was mentioned by 2 consultees. One mentioned that there needs to be a clear link between the paediatrician and key worker and another commented on the crucial role CCNs have to play. One NHS Service Provider felt that 'pump priming' initiatives with funding would help to achieve this action.

Named consultant paediatrician

Two consultees commented that a shortage of consultant paediatricians in some areas could cause difficulties in fulfilling this action. A further 2 consultees were unsure whether a named consultant was required and that any professional with access to full medical notes might carry out this duty. One Individual (Professional) pointed out that non consultant grade staff already manage complex needs cases and another felt that a named nurse would also be needed.

One Local Authority felt that "Each child should have a named representative from all key partners, including Education". Clear links and communication between partners was highlighted by 3 consultees, with a Professional Body commenting "better interface and communication between hospital and community professionals involved with the child and the family" and a Local Authority pointed out that there is no mention of involving the young people and their parents in planning.

Multi-agency annual review

Comments, each from 1 consultee, included:

• the need for a lead agency;
• the need for resources to deal with increasing numbers;
• the need to include Education Authorities;
• ensure the availability of sufficient numbers of trained staff;
• support for reducing the number of reviews for each child through integration.

Information packages

One Voluntary/ Charity Body noted,

" Information packages that are accessible to individuals with complex communication support needs require development. What general and specific information these packages will cover needs identified and resources allocated now if this goal is to be achieved by 2007."

Comments from other Voluntary/ Charity Bodies included the need for information to be tailored to the requirements of young carers and the need for "good quality, relevant, up-to-date information to be made available to families in a planned and consistent manner". This consultee also wanted to see the information packages made available to professionals working with the families and highlighted resources already available. A Royal College stressed that information packages would need to be fully accessible "including those with CSN arising out of communication impairment, literacy and / or language barriers."

The care package

Comments, each from 1 consultee, included:

• that this be a responsibility of the key worker;
• the need to involve parents and carers in planning the care package;
• a need for the information to be fully accessible.

A Voluntary/ Charity Body recommended "that the timescale be earlier than 2007 so that key worker and family liaison could inform the development of information packages as described in action 63."

The right to a formal multi-agency annual review

Five consultees felt that this action was a duplication of action 62. One Local Authority commented that "Individualised Education Plans and Co-ordinated Support Plans already being developed so duplication should be avoided in this area" and another felt that "Partners involved in annual review should be specified and named."

Discharge pathways

Comments relating to discharge pathways covered a range of issues, each mentioned by 1 consultee. Comments from Local Authorities concerned a phased approach as children progress towards adult care, development of best practice standards for transitional care planning and linking the discharge pathway to progress milestones.

A Royal College wanted to see all relevant AHPs included in development of the pathway, while an NHS Board saw the need for improved training for appropriate staff to provide both home and hospital care included.

Clarification was requested by Voluntary/ Charity Bodies on the distinction between discharge from home to hospital and transition and the remit of the key worker. In addition, there was a comment on the need for effective partnership working and a suggestion that "transition merits a separate section particularly in the light of the significance of transition from paediatric to adult services for a CYP with Complex Needs."

Commenting on both this and the following action, an NHS Clinical Group felt that these actions may be "More difficult to achieve in future as more children attending special units in mainstream schools across wide geographical area."

National clinical dataset

A Royal College stressed that all relevant AHPs should be involved in the development of the dataset, while a Voluntary/ Charity Body commented "What is monitored within discharge plans within a national dataset would benefit by being agreed between multi-agency (voluntary and statutory) representatives and ISD."

General comments on actions on complex needs

A Professional Body commented "It would also have been helpful to have an action for Health Boards in relation to Health supported respite care, which has been shown to be very effectively used to augment local authority provision, and prevent inappropriate admission of children with complex needs to acute hospital wards for respite care." Two other consultees stressed that no child should be admitted to hospital for respite care and a further 4 consultees mentioned the need for an action to include respite care. Three consultees mentioned palliative care.

Access to information on medicines was seen as important by 2 consultees and to adequately funded home nutrition services by 1 consultee. The need for adequate funding for equipment was raised by 2 consultees with 1 of these commenting on the difficulty of obtaining wheelchairs.

A Public Body asked "Is there a need to review the funding structure for services for children with complex needs? Smaller health services can experience great difficulty financially if a child with such needs moves into their area. Should the funding follow the child?"

Training for key workers featured in 4 responses, while multi-agency planning and working featured in 5 responses; this included mentions of GPs, Optometrists, Voluntary Organisations and Community Nurses. A Voluntary/ Charity Body commented "It would be of benefit to have someone with knowledge of PMLD to have representation on the Complex Needs Group", and a further 3 consultees stressed the need to ensure the requirements of those with learning or mental health disabilities were included. One consultee also commented on the importance of considering the needs of LGBT young people.

One NHS Management & Strategy Group commented on The Education (Additional Support for Learning) (Scotland) Act 2004 as " a significant cause of pressure on local children's services, the extent of which is yet to be fully discovered. The full implications for NHS systems will only become apparent as a consequence of case law. The Act is not even referred to in the section on Children's Complex Needs."

Other additional actions were suggested:

• the need for holistic care (3 mentions);
• dedicated AHP services for transition to adult services (2 mentions);
• the establishment of national standards for service delivery (3 mentions);
• toolkits for effective reviews (1 mention);
• use of telemedicine (1 mention);
• appropriate local premises for care provision (1 mention).

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