The next steps in Building the System National System of Care for Children and Young people with Hearing Impairment The next steps in Building the System for NE London Barts Health PAWG Eddie Herter Waheeda Pagarkar Ratna Shah Jo Page Margaret Baldwin Watkin PM September 2014 National System of Care for Children and Young people with Hearing Impairment The next steps in Building the System NE London By Barts Health PAWG A 15 minute presentation on 25.9.2014

… joining up all audiology services for 5 districts Waltham Forest Redbridge City and Hackney No notes Newham Tower Hamlets

… joining up all audiology services for 5 districts – 400,273 0-19 yr olds Waltham Forest 76,261 Redbridge 68,981 City and Hackney 79,682 No notes Newham 100,864 Tower Hamlets 74,485

Barking, Dagenham and Havering … joining up all audiology services for 7 districts – 499,358 0-19 yr olds Waltham Forest 76,261 Redbridge 68,981 City and Hackney 79,682 Barking, Dagenham and Havering 99,079 The National System is currently being actively built for 5 boroughs in NE London with a population from 0-19 yrs old of 400,000. There is also positive engagement with Barking, Dagenham and Havering where many of the services are run by NE London FT and it would be rational for their inclusion. This would increase the population to 500,000 with a birth rate >30,000 / year – the sort of population size for an Audiology Network recommended by the RCPCH. Newham 100,864 Tower Hamlets 74,485

… joining up all audiology services Waltham Forest. WXH sites- 3rd Tier 2nd Tier – None School Nurse Screen by NEL Foundation Trust Redbridge WXH sites- 3rd Tier 2nd Tier – None School Nurse Screen by NEL Foundation Trust ENT Acute Surgical Whipps Cross University Hospital ENT Acute Surgical Homerton University Hospital City and Hackney Hackney Ark-3rd Tier Hackney Ark + John Scott HC – 2nd Tier School Nurse Screen by Homerton UH Trust + Education Waltham Forest Redbridge Newham Hackney Tower Hamlets Barking and Dagenham Havering Networking the various services to be inclusive of all audiology activity however presents significant challenges. Although there are inevitable discussions about joining services into a single system, there is clear 3rd Tier engagement in the process 2nd tier services also make a significant contribution to diagnostic audiology activity in Newham, Hackney and Tower Hamlets and the 2nd Tier services are run by three different Trusts (ELFT; NELFT; Barts Health). All the districts also implement School Hearing Screens. There is no national protocol for the screens and screening coverage, results and outcomes are variably reported with some screens not being required by the commissioners to collect or report any screen data. Audiology services also interface with ENT services. Within the context of the local implementation of the National System for Audiology there are 5 different acute ENT services – all working with Paediatric Audiology Services to provide conservative management of “glue ear”. However there is no acceptance by the largest ENT provider that additional performance measures to evaluate NICE compliance is required. Is the rate of use of surgery <10 years the only statistic of value? Joining with Education is also central to building an inclusive and integrated system, but only the strategic importance of joint working is only “virtually” recognised by some of the Children’s Services. Although all services work jointly with education across the Network with some examples of good practice, a local offer of services for Hearing Impaired children and their Families has not been co-produced with clinical services in a majority of NE London districts. Tower Hamlets Hackney Ark- 3rd Tier Royal London + Steels Lane HC-2nd Tier School Nurse Screen by Barts Health Newham West Ham Lane-3rd Tier West Ham Lane-2nd Tier School Nurse Screen by EL Foundation Trust ENT Acute Surgical Royal London Teaching Hospital ENT Acute Surgical Newham General University Hospital

… joining up all audiology services through commissioning Local CCGs Waltham Forest, Tower Hamlets , Newham , Barking and Dagenham , and Redbridge , NHS England, Barts Health and other local providers have established a clinical transformation programme called Transforming Services, Changing Lives. A key element of the programme will be to consider how best to ensure safe, effective and sustainable hospital services at Bart's Health and Homerton hospitals, set in the context of local plans to further develop and improve primary, community and integrated care services. With such disparate views and disparate services is it probably not practicable, feasible or possible for a clinician build of a unified Audiology System. The engagement of those commissioning the services is critical. We aim to engage a commissioner and provider programme (Transforming Services Changing Lives) which itself aims at driving forward The Case for Change in primary, community and integrated care services in all the NE London districts. We believe that we can use this as the vehicle for building the Audiology Network.

… joining up all audiology services through commissioning What does good look like What is working well What is not working well What are the constraints commissioner support to implement the National System for an integrated NELondon Audiology System The Transforming Services Changing Lives programme required that we submitted our Case for Change in terms of :- What does good look like What is working well What is not working well What are the constraints The plan for the integration of local audiology services into a single system driving continuous “across the board” quality improvements through an annual report of performance was presented within the Case for Change structure set out by the NE London Commissioning Support Unit.

… the plan to join up all audiology services i. Council ii. Health watch iii. CCG iv. Children Services v. Public Health vi. Social Services CHSWG Parents NDCS   The National System of Care for Children and Young People with Hearing Impairment North East London   Health + Wellbeing Boards The plan is to submit the required annual report using the standards outlined in the National System template. Because this has a wide service and agency remit it will be presented to the local CHSWG for consideration, change and ratification. This will enable the NDCS and parent representatives to be actively engaged in the process. The way of achieving appropriate parent consultation is currently the subject of focus group discussions held by our Parent Support Co-ordinator. Following CHSWG ratification the Annual System Report will be presented to the Health and Wellbeing Boards by the local Public Health Service. The presentation to the Health and Wellbeing Board allows engagement across the local council and agencies.

… the plan to join up all audiology services i. Council ii. Health watch iii. CCG iv. Children Services v. Public Health vi. Social Services Health + Wellbeing Boards There was agreement that this reporting process to the local Health and Wellbeing Board would be trialled in Waltham Forest by Waltham Forest Public Health – following a presentation to them of material about the National System on the Healthcare Public Health website.

… the plan to join up all audiology services i. Council ii. Health watch iii. CCG iv. Children Services v. Public Health vi. Social Services   The National System of Care for Children and Young People with Hearing Impairment North East London DRAFT REPORT SEPTEMBER 2014   Health + Wellbeing Boards It was requested that the initial draft pilot report for Redbridge and Waltham Forest be submitted to the local Public Health Dept. by October 2014 – requiring submission to the CHSWG in September 2014. The challenge of transforming the table of levels of quality standards into a readable and appropriate document is important and the example of the Diabetes Network Report previously commended by the project manager and recommendations from the current National Network meeting will be used. Because of the time frame an interim draft report has been produced.

… the report to the H+W Board NHS CCG Paediatric Audiology Provider Borough BY? Identification of Deafness Access to accurate diagnosis The provision of clinical care The provision of integrated support WHAT? eSP and SMaRT Clinical Reporting System Shared register updated from eSP and SMaRT BY? The interim draft report for Redbridge and Waltham Forest has been functionally subdivided the system components into Identification of Deafness Access to accurate diagnosis The provision of clinical care The provision of integrated support Each functional component of the system reports performance for a slightly different local population defined by the CCG of residence, their attendance with the provider Paediatric Audiology Department, or their residence within the borough. Each functional component of the system also aims at measuring performance by different reporting systems, the eSP and SMaRT systems for the screens, the Clinical Reporting System for the Provider and an integrated register of Permanent and Persistent Hearing Impairment for assessing the performance of the integrated support. This will require further local developments of the reporting systems.

… the report to the H+W Board Accessible, Readable and Interesting and Contains……… i. Scored Performance Statements ii. Tabulated Performance measures iii. Epidemiology report iv. Action plan   The National System of Care for Children and Young People with Hearing Impairment North East London DRAFT REPORT SEPTEMBER 2014   The interim draft report for Redbridge and Waltham Forest contains scored performance statements, tabulated performance measures, and an action plan. It is also intended that it includes an epidemiologically based report on PCHI updated for the previous year. The latter is particularly relevant to Children’s Services in forward planning.

… action plan to the H+W Board The NHS in East London has to meet the needs of some of the most deprived areas in the UK and providing care for children and young people with hearing impairment today whilst planning for tomorrow requires the availability of robust local evidence on the epidemiology of hearing loss. To achieve the best outcome for every hearing impaired child they must receive the best clinical care delivered by high quality medical and surgical services. The most beneficial amplification must be available to them – including when required early access to implantable devices. The provision of clinical care   … action plan to the H+W Board For children with persistent or permanent childhood hearing impairment (PCHI) by Provider Paediatric Audiology Clinic(s)   WXH Paediatric Sites All parents of babies and children with a confirmed PCHI are offered referral to appropriate medical consultants for aetiological investigation and assessment in a timely fashion – evidence based or informed by professional guidance All appropriate cases are offered hearing aid fitting within 4 weeks of confirmation of hearing loss unless delayed for management reasons - measured by the NAS12 Performance Indicator Appropriate hearing aids are fitted according to MCHAS or other accepted professional guidelines and programmed with appropriate features using real ear measures and prescriptive fitting rules. Robust on-going audiological care is proactively provided throughout childhood including regular checking and replacement of hearing aids, hearing aid settings, and use in the home is carried out. This information is shared with colleagues to form part of the child’s integrated support and audiology care plan. *A hearing aid repair, ear-mould replacement and battery issuing service is available and accessible to parents and other professionals each working day throughout the year Hearing aids, listening systems and other devices have been purchased through a regularly audited joint procurement system 90% of profoundly deaf children identified by the NHSP whose parents wish for implantation are implanted before 12 month - measured by the NAS13 Performance Indicator Promote awareness of and raise awareness among healthcare professionals of the preventable causes of hearing impairment with information available in all healthcare settings Provide robust evidence to support the epidemiology of hearing loss with the aim of reducing the number of children with preventable hearing impairment per 1000 births   The National System of Care for Children and Young People with Hearing Impairment North East London DRAFT REPORT SEPTEMBER 2014   An example of the page from the Interim Draft Report for Redbridge and Waltham Forest is shown.

… action plan to the H+W Board   Improving Identification Whilst the Neonatal screen is undertaken to an approved national standard and routinely reports validity data – this is not the case for the School Entry Screen. The possible movement of school nursing services to Public Health and the availability of a designed screen reporting programme (SMaRT) provides an opportunity for Audiology to work with the school nursing services and Public Health to reverse this situation.   The National System of Care for Children and Young People with Hearing Impairment North East London DRAFT REPORT SEPTEMBER 2014   The Action Plan has functionally subdivided the criteria into system components to be actioned. Because of the significant changes that are required only those criteria where the quality standard is not achieved or is not obtainable have been reported for action. Improving Identification Whilst the Neonatal screen is undertaken to an approved national standard and routinely reports validity data – this is not the case for the School Entry Screen. The possible movement of school nursing services to Public Health and the availability of a designed screen reporting programme (SMaRT) provides an opportunity for Audiology to work with the school nursing services and Public Health to reverse this situation.

… action plan to the H+W Board Improving Diagnostic Services The IT systems are not yet in place to report all the measures required to assess the level of performance of this System component. Performance reporting can be built into the Clinical Reporting System. Not all the standards have yet been agreed eg the performance measure to evaluate the implementation of an appropriate system of “Watchful Waiting” and national rather than local measures should preferably be employed.   The National System of Care for Children and Young People with Hearing Impairment North East London DRAFT REPORT SEPTEMBER 2014   Improving Diagnostic Services The IT systems are not yet in place to report all the measures required to assess the level of performance of this System component. Performance reporting can be built into the Clinical Reporting System. Not all the standards have yet been agreed eg the performance measure to evaluate the implementation of an appropriate system of “Watchful Waiting” and national rather than local measures should preferably be employed.

… action plan to the H+W Board Improving Clinical Care Measuring the performance of our Clinical Care requires the further development of the integrated register of PCHI with data imported from eSP and SMaRT. This should also be the basis of the annual epidemiological report made to Public Health. In addition it is clear that we are not achieving the target for Cochlear Implantation in infancy. Evidence should be made available from the register with improvement targets set. The integrated register should also enable co-ordination of clinical activities with the educational service.   The National System of Care for Children and Young People with Hearing Impairment North East London DRAFT REPORT SEPTEMBER 2014   Improving Clinical Care Measuring the performance of our Clinical Care requires the further development of the integrated register of PCHI with data imported from eSP and SMaRT. This should also be the basis of the annual epidemiological report made to Public Health. In addition it is clear that we are not achieving the target for Cochlear Implantation in infancy. Evidence should be made available from the register with improvement targets set. The integrated register should also enable co-ordination of clinical activities with the educational service.

… action plan to the H+W Board Improving Integrated Support Although the Local Offer has been co-produced in some of the NE London boroughs, an agreement (with terms of reference) has not been co-produced between local Education Services and the Audiology Service detailing how service providers will give integrated support to deaf children and their families is required. There is now an agreement with local Audiology Services that there will be an integrated agreement produced and available for Children’s Services in both boroughs.   The National System of Care for Children and Young People with Hearing Impairment North East London DRAFT REPORT SEPTEMBER 2014   Improving Integrated Support Although the Local Offer has been co-produced in some of the NE London boroughs, an agreement (with terms of reference) has not been co-produced between local Education Services and the Audiology Service detailing how service providers will give integrated support to deaf children and their families is required. There is now an agreement with local Audiology Services that there will be an integrated agreement produced and available for Children’s Services in both boroughs.

and to follow…………………. This method of building the System will allow it to be refined and then spread across the pilot Network by the end of the year. To be inclusive this cannot be simply clinician led and will require the positive local engagement of parents, NDCS, commissioners, education and project management – reaching the parts others can’t.