Children and Young People's Health Support Group

The Chair thanked Boyd for his presentation and noted that this was an important issue. There was discussion around whether a reduction in the number of cases entering the Hearings System would necessarily increase the potential for early intervention. There was particular concern about the capacity of child and adolescent mental health services to achieve this. It was suggested that if specialist intervention cannot be provided immediately, alternative interim arrangements should be made. It was suggested that as well as any legislative change, investment in core services will be required to ensure that children receive the services and interventions that they need.

It was noted that different agencies use different criteria for referral to the CHS and that monitoring will be required to ensure that referrals are appropriate.

The key messages from the presentation and subsequent discussion were that:

The 2nd phase of the CHS goes much wider than the Hearing's System itself, with proposals for reform of the way in which children in need are identified and supported.
There will be implications for NHS Boards, particularly in terms of service capacity and redesign.
The 2nd phase of the Review needs to link with the child protection reform programme.
Planning for implementation of the new proposals must take place within the integrated children's services planning context.

The Child Health Commissioners were invited to nominate a representative to attend the Children's Hearings Representative Group, which meets approximately twice a year. Catriona MacDonald agreed to attend the meetings and engage with colleagues in discussion by e-mail as necessary.
3. Administration of Medicines in Schools

Sarah Corcoran from the Scottish Executive Women & Children's Unit highlighted the guidance produced by the Scottish Executive in 2001 for the administration of medicines in schools, and noted that a recent monitoring exercise revealed an improvement in implementation. However, it was noted that there was some slow development in some areas (7 areas have no formal written agreement with the local NHS Board). It was emphasised that NHS Boards were responsible for the medical treatment of children in schools and that school nurses played an important role. It was agreed that the Child Health Commissioners in each of the 7 areas without a formal written agreement would take on the task of facilitating joint agreements with the relevant local authorities.

4. CLEFTSiS

John Clark gave a presentation on CLEFTSiS, highlighting that there was now a well established Managed Clinical Network (MCN) for cleft services and that the annual report for CLEFTSiS was available on www.show.scot.nhs.uk/cleftsis. Outcome assessment has revealed that CLEFTSiS has resulted in improvements for children and young people in Scotland, and that there are plans for a UK-wide study to allow comparisons. John highlighted the Clinical Standards Advisory Group (CSAG) staffing recommendations, and that in Scotland, these are not met, with particular shortages in clinical psychology input. He suggested that this required to be addressed through NHS Board planning, and asked the Child Health Commissioners for their assistance in raising this issue.

There was some concern amongst those representing remote and rural communities about over-centralisation of services and the potential for a reduction in provision of local services to those in remote and rural areas such as the Highlands and Islands. John suggested that the MCN approach was intended to strengthen local support, but noted the concerns.

There was some discussion about the most appropriate forum for raising planning for services which require a national approach. The Chair suggested that this shoud be raised with Derek Feeley who is a key lead for the National Framework for Service Chance in the NHS in Scotland.

The Child Health Commissioners were generally supportive of the direction of travel set out in the paper which had been circulated, but were apprehensive about the pace at which change could be afforded and achieved.

Action: Caroline Selkirk to raise with Derek Feeley the need for there to be route into the national planning mechanism for specialist services.

5. Parents and Paediatricians Together Project

Anne Wilson gave a presentation on the Parents and Paediatricians Together project, which is a joint project between Contact a Family (CaF) and The Royal College of Paediatricians and Child Health (RCPCH) to strengthen the involvement of parents in shaping child health services. She highlighted that, in a survey, approximately 90% of parents would like more information from their doctor and that approximately 84% would like to engage in participation for which CaF can facilitate training. Anne highlighted the large database that CaF has built up which allows clincians to be put in contact with groups of parents. She also advised that CaF was mapping existing work on participation with parents and proposed to make the output available through the RCPCH.

Contact a Family has developed a parent participation guide for parents, and a version for professionals. A new version, developed specifically for the health sector, is to be published soon, through the RCPCH.

In the discussion following the presentation, it was suggested that the inclusion of the word 'disabled' in the tag line of the CaF logo, meant that some groups of parents and children may be under-represented e.g. where a child is in a short-stay neonatal unit or is ill for a short-medium term and wouldn't be considered "disabled". Anne acknowledged this and agreed to flag it up for future discussion. There was also some discussion about how CaF fitted with other existing disease-specific voluntary support groups. Anne explained that parents have indicated that they like having two different types of support group and that whilst disease-specific groups can provide excellent information for specific conditions, CaF is a general support group for all conditions and can provide information and expertise on general issues such as bereavement and housing benefits.

6. Minutes of previous meeting

The minutes of the previous meeting held on 15th December 2004 were accepted as an accurate record, and would be re-circulated as some people had received a version containing tracked changes.

Action: Peter Barlow to recirculate correct version of minutes.

7. Matters arising

A note of the action points from the previous meeting had been circulated, together with information on the progress of the points. It was noted that Linda had discussed the Child Protection Reform Programme at the Child Protection Committee Chairs' meeting and that, in the future, the meeting format is likely to change to include health representation. It was also noted that representatives from NHS24 have been invited to a CPC meeting to clarify the role of NHS24 in child protection.

8. Children's Hospice

Linda de Caestecker highlighted that CHAS is developing a second hospice - Robin House - to specifically deal with older adolescents. It is envisioned that Robin House will open in the latter half of 2005. Although the Scottish Executive has provided pump-priming funding, NHS Boards and local authorities will be expected to provide ongoing funding, as for Rachel House. This is currently co-ordinated by Dave Carson at NHS Tayside, and calculated on rolling place usage. Funding proposals are expected to be published by CHAS for consultation in early June. CHAS are keen to meet with the Child Health Commissioners to discuss the proposals.

Several Child Health Commissioners suggested that there would be objections in NHS Boards to funding Robin House, given that CHAS has undertaken this project without prior consultation with them. They would want an indication of the proposed costs in advance of a meeting with CHAS.

Action: CHAS to be invited to a future meeting. Dave Carson also to be invited.

9. A.O.B.

9.1 Ready Steady Baby Consultation

The Child Health Commissioners confirmed that they woud be happy to offer their views as part of the consultation, but given the timescale, they would not be in a position to consult more widely with colleagues. The group felt that the consultation should have been extended to health visitors, GP's and midwives. Peter Barlow informed the group that NHS Health Scotland had no plans to produce a summary document of Ready Steady Baby.

9.2 Chair of the Child Health Commissioners' Group

Caroline Selkirk indicated how much she had enjoyed chairing the Child Health Commissioners Group for the past 2 years, but that she felt that it was time for a new chair to be elected to carry forward and evolve the remit of the group. Caroline thanked the Women and Children's Unit for the support they had provided.

It was noted that the group should establish a formal constitution.

Action: Peter Barlow to e-mail members, requesting nominations for new chair and vice-chair.

Action: Child Health Commissioners to develop formal constitution.

9.3 CHC representative on QIS Asthma Group

The Chair requested nominations for a representative to sit on the QIS Asthma Group, which will be developing standards for asthma care in children. Cathy Orr agreed to act as CHC representative.

9.4 Specialist healthcare services to independent residential special schools

There was some discussion about the letter, recently issued by Peter Collings, about arrangements for the provision and funding of specialist healthcare services to pupils independent residential special schools. It was suggested that the proposals would involve disproportionate effort for the relatively small amounts of money involved. It was, however, noted that there could be a serious risk issue for NHS Boards in that some children are not receiving the specialist inputs that they need.

The Chair suggested that members of the group should contact their finance departments to establish the sums of money involved. At the moment, the group felt they did not know how many children would be involved, how many schools or the kinds and levels of specialist input. Once more information has been gathered, the group would be in a better position to comment on the letter and agree a sensible way forward.

9.5 Ministerial visits

Linda de Caestecker mentioned that the Deputy Minister wished to visit children's services and facilities during the Summer parliamentary recess, and requested suggestions from the group for potential locations. The Child Health Commissioners suggested that the most recent PAF responses might highlight key facilities and services for consideration.

Action: Child Health Commissioners to consider whether there are facilities in their area that they would like the Deputy Minister to visit, and advise Linda de Caestecker.

9.6 Hall 4

Lindsey highlighted that the finalised Hall 4 guidance had been published that morning and would be distributed widely. She confirmed proposals to develop a leaflet for parents, and to establish a national implementation network, but indicated that these have not yet been finalised.

9.4 Date of Next Meeting

The group agreed that the most appropriate date for the next meeting should fall somewhere in the latter half of August.

Action: WCU to trawl for dates of next meeting.