Minutes for the Brighton and Hove Children S Hearing Services Working Group (CHSWG)

Minutes for the Brighton and Hove Children’s Hearing Services Working Group (CHSWG) 13th September 2011

Attending: Karen Gazeley (KG) – chaired in Virginia’s absence Lisa Gadsdon (LG) Alison Davis (AD) Caroline Palmer (CP) Fleur Devaney (FD) Vanessa Sharp (VS) Chris Browning (CB) Heather Fletcher (HF)

Apologies: Virginia Harvey (VH) Rob Low (RL) Mark Witcomb (MW) Angela Gendre (AG) n.b. Please check Linda Evans (Sussex Community Trust is on circulation list)

Minutes from last meeting SNS – appointed Ali Davies to cover Sul Regan’s maternity. Ali has previously been running a large HSF in London. Deaf Awareness training – see below. Parent Representatives – KG to check with Sue when next SNS newsletter is due out and Fleur to write an article. CHSWG training for parents – HF to advise when she has dates and venues.

Updates from all services Sensory Needs Service Staying at Heversham House for this academic year. Bevendean HSF – a new child has started who needs BSL communication support. Temporary support from Learning Support Assistants with BSL skills so need to recruit a full time LSA – please spread the word. No clear funding formula yet. Met with Jo Lyons (Lead Commissioner) last week and she agreed to get a funding formula sorted by October Half Term. Also meeting with Gill Henry (SEN Manager) this afternoon. Also discussing acoustic improvements so all moving forward slowly. Audiology Funding for move to the ‘Alex’ now part of much wider ‘3Ts’ development and this is now being delayed, so paediatric audiology developments still on hold. Could be another year. Adult Service now in 4 centres around the authority. Office staff have moved and there have been staffing issues and problems with phone line (Brighton 545922) for all audiology contact. VS hopeful that things will improve by end of the month. HF suggested that parents may wish to complain if no real improvement in accessing audiology service by mid October - through PALS or through the audiology admin email address so that they can keep a record. VS to advise of email address for next SNS newsletter. LG also happy for parents to contact her if having problems and she can relay to Rob Low Paediatric repairs – VS said it is better if parents and children can come together so that colours of molds/aids and use of FM etc can be discussed. HF asked what age paediatrics cover – up to 18/19. Paediatrics/Aetiology LG – Janine is home and recovering well. It is still difficult without Janine, however, children have been seen by 4 paediatricians and they are setting up a system for reviews and new patients. LG best contacted by either email or phone. NDCS Big Weekend (deaf children with additional complex needs) – 9-11 March 2012, Manchester Newly Identified Weekend – 16-18 March 2012, Brighton Pre (primary) School Weekend – 24-25 March 2012, Farnborough, Hants Who am I resources for teenagers and parents (available from Website or Helpline) Positive Parenting DVD – in several languages and BSL Getting Ahead training for deaf schools, secondary HSFs and Youth Clubs by request (focusing on self esteem, deaf identity, independence and communication for teenagers). Info has been circulated to SNS by email/also on NDCS website Campaigns – mostly focussing on cuts in services

Educational Audiology CB talked about long standing problems of funding FM in schools. Funding for equipment has been delegated to schools but money not ringfenced. Have now got clearance from the Local Authority for a new scheme to provide FM where schools will either: a) buy and manage FM system themselves b) pay an annual fee (approx 1/3 cost of a new system) to SNS who will provide and manage CB envisages most schools opting for (b) and should start from April 2012. AD concerned that some schools may not fund for FM– SNS needs to demonstrate to schools that they have the delegated funding to pay for this. HF mentioned that under the Equalities Act schools must make reasonable adjustments so this legislation should help parents to ensure that they can get the school to fund FM where deemed appropriate for a child. CB also developing a contract following the NDCS FM Quality Standards. VS asked if option (b) could be expanded to deaf children in private school – should be possible but schools may pass on cost to the parents.

SNS Family Support Worker CP – has found a venue for Springboard and the After schools club: Springboard twice a month on Thursdays at Portslade Health Centre. Also alternative weeks ‘chez Fleur’ /other parents’ houses. 2 After school clubs (4 – 7 yr olds and children at Key Stage 2 level) – both at St Andrews School. Details of all groups to go on SNS website. Also poster to audiology to promote. Hoping to involve parents more to use their skills to help run after school clubs e.g. crafts, sports etc. For teenagers – hoping to organise an activity day at Glyndebourne but also interested in idea of NDCS ‘Getting Ahead’ training.

Parent Reps AD suggested that parent reps have a generic email address to use to contact parents with main points from CHSWGs and for parents to raise issues. Once set up, to be promoted via SNS website and newsletter and Audiology noticeboard.

Progress of parent feedback questionnaires SNS has not had any more since last CHSWG meeting. KG to chase parents/carers for replies. HF to contact East and West Sussex SNS to set up meeting to discuss progress/next steps. AD commented on problem of having to give child’s DoB and date of diagnosis therefore cannot be anonymous. Policies/protocols how do we move this forward VS And LG to finalise and KG to check her submission has been finalised. VS asked KG to email her version to try to ensure some consistency in format. All to email final versions to VH by end October 2011. Need to discuss who puts info onto CD/DVD and recipients of these at December CHSWG. Rolf Trendell/ changes to Equipment Assessments HF to contact Rolf before end September to ask what has been agreed re deaf children when he leaves the service in November. Get contact details of staff member/team who will deal with future assessments and if necessary sent copy of NDCS Quality Standards in Social Care. Report back to CHSWG. Parent Reps also offered to take up this issue if necessary. Rolling programme of training/ deaf awareness days etc KG – need to start planning rolling programme and wants to involve other professionals. Maybe link with East and West Sussex for some activities. Parent group changes - Covered above?

AOB Hearing Therapy for children – VS advised that Saskia back from maternity leave and wants to raise awareness about equipment (environmental and listening aids etc), and maybe lip reading classes for children. Also opportunities to mix with other deaf chidren so might be good to link to SNS activities.

Paediatric Audiology Services leaflet – VS working on this as a project with a couple of students and then hopes to get parent views on draft. She would like drawings by children incl. images of children with hearing aids so if anyone can help supply, please contact her e.g. from drawing activities at After Schools club.

Connevans visit to Hamilton Lodge on 11th Oct – CB mentioned that he hopes that other children and parents from Brighton and Hove can go along between 4 – 5pm to see equipment and ask questions – TBC.

SOECIC issues VS talked of a letter from the implant centre where they now want local services to carry out ECGs as part of the overall CI assessment procedure (for QT interval investigation). VS to send copy of letter to Nick Saunders in ENT.

CB and HF both raised issue of letter to parents informing them that Southampton implant centre will be levying charges for replacement processors if they have been lost twice within two years. NDCS Audiology Adviser/Manager has provided some information to Family Officers and HF copied to CB for a meeting he had with SOECIC that afternoon.

Deaf Diaspora event HF will have a stand at this event on 24th at Hamilton Lodge. HF to circulate info to CHSWG members (DONE)

Next meeting: Tuesday 13th December 10am – 12 noon, Heversham House