Children and Young People’s Health Support Group Meeting - 11 May 2015
Minutes
Present
Malcolm Wright – Chair
James Cannon – NHS North of Scotland Regional Planning Group
Jim Carle – Disability Champion
Lawrie Davidson – Care Inspectorate
Jean Davies – Strategic Paediatric Educationalists & Nurses in Scotland (SPENS)
Linda De Caestecker – Faculty of Public Health
Mike Bisset - Regional Medical Director, North of Scotland Planning Group
Sally Egan – Child Health Commissioners
Dr Peter Fowlie – Royal College of Paediatrics and Child Health (RCPCH)
Gwen Garner, Action for Sick Children Scotland
Catherine Gorry- NHS, Speech and Language Therapy
Mary Hoey - Education Scotland
Catriona Johnson – National Services Division (NSD), representing Deirdre Evans
Jacqueline Lamb – Children in Scotland
Carrie Lindsay – Fife Council, Association of Directors of Education Scotland (ADES)
Elaine Lockhart, Royal College of Psychiatrists Mary Hoey – Education Scotland
John O’ Dowd – NHS Ayrshire Arran
Judy Thompson – NHS Education for Scotland (NES)
Professor George Youngson – University of Aberdeen, Emeritus Professor,
Paediatric Surgery
Scottish Government
Bob Fraser – Getting it Right for Every Child (GIRFEC) Health Adviser
John Froggatt – Child and Maternal Health Division
Susan Gallacher - Child and Maternal Health Division
Mary Sloan – Child and Maternal Health Division
Emily McLean – Child and Maternal Health Division
In attendance
James Ferguson – NHS 24
Ronnie Hill – Health & Social Care Alliance
Debbie McGirr - Children with Exceptional Healthcare Needs National Managed Clinical Network
Anne Marie Pitt – North of Scotland Planning Group
Apologies
Sharon Adamson- NHS Greater Glasgow & Clyde
Jan Beattie, AHP for Children and Young People
Jim Beattie – NHS Greater Glasgow Clyde
Kirsty Craig – Branch Head, Children and Young People’s Health
Rod Duncan - NHS, Scottish Committee of Children’s Surgical Services.
Julia Egan- Chief Nursing Officer Directorate
Gavin Fergie – Unite/CPHVA
Neil Hunter – Scottish Children’s Reporter’s Administration
Ali MacDonald – NHS Health Scotland
Bernie McCulloch – Healthcare Improvement Scotland
Kate McKay –Senior Medical Officer
Mandy Morrison, Community Care Providers
Brenda Renz – Consultant Psychologist, NHS Greater Glasgow and Clyde
Jacqui Simpson – South East and Tayside (SEAT)
Rachael Wood - Information Statistics Division (ISD)
Karen Wilson – Scottish Ambulance Service
1. Welcome and Apologies
1.1 The Chair welcomed the Group and outlined the agenda for the day.
2. Children with Disabilities
2.1 Jim Carle updated the Group on research which the Children’s Hospice Association Scotland (CHAS) has undertaken regarding children with life-limiting conditions. This project is on course and the report will be launched at the Children with Exceptional Needs conference on 4 November. The aim of this work is to identify number of 0-25 years olds with life-limiting conditions, so that care needs for the next 10 years can be predicted. CHAS could present to the Group at its August meeting.
2.2 Jim also informed the Group that the Ministerial Advisory Group for Children with Disabilities has been reconfigured and a workplan for this Group has almost been completed. Jim asked that if any members of the CYPHSG have issues regarding the health of children with disabilities that they inform him, so that he can take these to the Children with Disabilities Group.
2.3 Jim introduced Ronnie Hill of the Health & Social Care Alliance’s Getting to Know GIRFEC project. The Health & Social Care Alliance is a third sector organisation with over 1,000 members, some of whom are individuals, others are third sector organisations. It advocates for those with long-term conditions and disabilities. It has had Scottish Government funding to help inform children and families about GIRFEC. The Alliance has been asked to put into place training, learning and discussion. The project has been running for 2.5 years.
2.4 Materials for this work were compiled in August last year and launched in November. 800-1000 parents, carers, workers and children were consulted as part of this work. Parent feedback on the Named Person and Lead Professional has been positive. Young people, parents and carers need to understand GIRFEC, acronyms and the assessment tools being used eg the My World Triangle and the SHANARRI wellbeing indicators. Materials have been produced with other organisations such as People 1st, who produced a guide on wellbeing. The guides produced are available on the Alliance’s website http://www.alliance-scotland.org.uk/ There is a an Easy Read parents’ pack and a practitioners’ pack has also been produced. These guides can be used within other organisations.
2.5 Material is being developed for those who use British Sign Language and the Alliance is working with Solar Bear, a theatre company for deaf children and young people. It will produce a DVD and YouTube videos about GIRFEC. These should be available in September.
2.6 It was found that a lot of parents with disabled children did not know about GIRFEC. Parents have been positive about GIRFEC, wanting to understand and be involved in it. When practitioners construct Child’s Plans they will need to do this in a way parents can understand and provide interpreters for those who are deaf. Parents would find preparation before meetings with professionals helpful and this will take resourcing.
2.7 It was suggested that a stand-alone guide on the Named Person may also be helpful and this possibly could be done. It was additionally suggested that an Easy Read guide on the UNCRC may also be helpful; although this would require to be funded. Ronnie added the caveat that the guides which have been produced will need to be checked against the new statutory guidance when it is completed. The guides are not currently available in other languages, but can be adapted by others. Ronnie asked group members to promote the use of the materials and resources within their own organisations and some group members indicated that they were planning to adapt the material for their own organisation’s communication with staff and service users/patients.
Action: CYPHSG to promote the use of the Health & Social Care Alliance materials and resources within their own organisations.
2.8 Jacqueline Lamb informed the Group that the Enquire line which Children in Scotland host will be evaluated, looking at whether it needs to extend beyond education. Work on this is expected to begin in September. Jacqueline can update when there is more information.
3. Children with Exceptional Healthcare Needs (CEN)
3.1 Debbi McGirr gave an update at the Group’s December meeting. She reminded the Group that CEN was asked by the Scottish Government to undertake a scoping exercise of how many complex care packages there are. The results were presented to the Executive Nurse Directors’ Group and the CYPHSG. Complex needs can be defined as those that are not met by Universal Services.
3.2 In February, 43 children & young people aged 15-19 were recorded on the SNS (Special Needs System) register as having highly exceptional needs. In 2012, 15,500 children were recorded on the SNS system as having an additional need, in February this had risen to 19,000. In 2012 78% were recorded on SNS as having an additional impairment, this had risen to 80% in February 2015.
3.3 The scoping exercise identified variable access to support and assessments across Health Boards. Without set guidelines for assessments there is an issue of risk and governance. Some care packages are funded by health, others by private companies.
3.4 In 2012, 10 nights on long-term ventilation for a whole year cost £130,000, this has now increased by 30%. In was raised that in order to mitigate risk in care packages there is a tendency to put in over and above what is needed, this can mean at a later stage when support is withdrawn parents think that this is due to financial savings, but it is to do with the child progressing. If there was a decision making tool parents would be able to see this progression.
3.5 An evaluation of the CHAT tool in 2012 showed that the needs of the family were not taken into account and that it was very prescriptive. NHS Lothian have adapted the CHAT tool and have an appeals process. It was raised that an appeals process would need to be considered as part of the work CEN are proposing. The tool CEN propose would not make recommendations on who would fund care; this would come down to local level. It was said that who funds care packages is an important area of consideration.
3.6 Debbi proposes developing a national framework for continuing care for children and young people and asked for the CYPHSG’s support. She envisages 18-24months’ work which would need an experienced project manager. It was suggested the framework could adapt the cancer MSN model.
3.7 It was highlighted that there needs to be recognition from adult services as well as children’s services, with regards to care packages and transitions. The framework should take account of mental health issues and GIRFEC.
3.8 The Group was supportive of Debbi’s proposal.
Action: Debbi to discuss resources to take this forward with Catriona Johnson, NSD and with the Public Health Network.
4. Scottish Patient Safety Programme
4.1 George Youngson updated on behalf of Linda Clerihew as she was unwell. George began by saying the programme is not just about safer care, it is also about better care. The scale of adverse events was highlighted by the Institute of Medicine in the USA , who identified that patients were being unintentionally harmed by healthcare - globally 1 in 7 patients (~ 15%) are being harmed. At least half of this harm may be preventable. The Scottish Government has liaised with the Institute of Healthcare Improvement in Boston on this. An example of good practice in many aspects of children’s acute careis the Cincinnati Children's Hospital in the USA.
4.2 George went on to remind the Group that the Scottish Patient Safety Programme began in 2007, with the aim of reducing mortality by 30% which has been achieved. The Scottish Paediatric Programme started in 2010, which led to formation of MCQIC (Maternity and Children Quality Improvement Collaborative) in 2013. MCQIC’s initial programme is due to end in December 2015. Maternity champions are funded until July 2015, although it was confirmed they would be funded for a further year. Adverse events arelogged on Datix but there is not always adequate learning from this so other measures of harm in paediatric care are required and a paediatric harm index has been the target of a lot of the early work of MCQIC. The causes of death in childhood were reviewed and the contribution of trauma and infection noted. (Mortality in the first year of life is highest and cancer is the second biggest cause of death in children after 1 years of age).
4.3 The challenges associated with the safe prescribing of medication in children were noted; in particular note was made of the tools which are required to detect the child who silently deteriorates. Paediatric Serious Harm Key Indicators have been identified and the different elements of this were discussed. Work is being started to attempt to capture the number of children harmed who are already known to child protection. Two learning events have been run a year since the inception of the programme and at the most recent, 50% of attendees were doctors,after an initial delay in engagement of medical staff with this initiative.
4.4 George gave some examples of work that the Programme has been involved with. Improvement Trees on wards have given parents the opportunity to record positive and negative experiences. Children going into theatre in Tayside have been given a ‘theatre ticket’, whereby they can take in an item that is important to them. Huddles have been taking place in the morning crossovers to anticipate the challenges facing the healthcare team in the coming day. The Sepsis 6 programme is being monitored (Sepsis kills children faster). A Watcher’s Programme has been developed, where children who need a little more care or causing low-grade concern are kept an eye on. Parents can be involved but this is mainly about children who may not have the necessary advocacy.
4.5 Work is also commencing on the importance in the area of human factors and their influence of disruption and distraction, for example on performance and susceptibility to error.
4.6 George spoke about how the programme was making a difference. This included: the time spent in ITU has been reduced, theatre cancellations have been halved (can be attributed to huddles) and the accuracy of patients going home has gone from 34% to 72% (eg release from hospital is noted on a whiteboard and parents/nurses can chase up to ensure there are no delays).
4.7 It was raised by one Group member that there is still work to be done to convince people that this works. Data is needed to demonstrate improved outcomes and the only way for this to be done is through a national collaborative.
4.8 A conversation on MCQIC is due to take place with HIS (Healthcare Improvement Scotland) on 12 May. A National Programme is needed with the engagement of Boards.
5. Children and Young People Act 2014
5.1 Bob Fraser updated the Group that the consultation on the draft guidance had now closed, as well as the consultation on the Child’s Plan. There will be further consultation on the secondary legislation on complaints. Consultation on the complaints order still has to take place – it needs to be accessed easily and for duplication to be minimised. There may be slight changes to the statutory guidance but the provisions of the Act are on schedule to be introduced in August 2016.