20 parents attended the group

Professionals attending

Aysegul Dirik
Maggie Bromage
Deborah Walsh
Pat Howley
Azhar Rahman
Susan Crocker
Elizabeth Walsh-Pujante
+ interpreter

Aysegul Dirik facilitated the meeting.

1. Introductions from the speakers and parents:

Ayse welcomed everyone to the meeting. 20 parents in attendance.

2. Presentation from Maggie Bromage, Chief Executive of City & Hackney Carers Centre

The Carers Centre is open to any carer over the age of 16.

Advice Service - 5 workers who are multi-lingual including 5 Asian languages ,Turkish and French. Help carers claim benefits as well as backpay so please make an appointment for a benefits check. Workers can help put in claims for individual grants eg a washing machine, special beds, ovens.

Counselling Service which has 7 therapists - 3 person centred providing up to 12 sessions, more if necessary. Four Human Givens therapy, which is deep relaxation, works well with anxiety trauma, abuse, re needs not met, lack of control, status, connection to wider community, building relationships, looking at how those needs can be met. We do have spaces available so please get in touch. Listening ear just to come and talk to someone.

Advocacy Service 12 volunteers who are trained as advocates. If you need practical advice on difficulty you’re having please come and talk to an advocate.

Men’s project is for male carers, they often don’t get a lot of help and often struggle to talk about difficulties they might be having and often don’t look after themselves. Please direct any male carers you know to Luke who runs the service.

Under 28 Service for Young Adult Carers.

Mental Health project is run by Ben Hibberd, if care for a child with mental health problems get in touch, there is a monthly group, Sunday afternoon and Monday evenings group (for working carers).

Valuing Carers Group - run by Aysegul Dirik for carers of adults with a learning disability.

Turkish speaking group is held every two weeks for Turkish speaking carers.

Training - we train professionals to raise awareness about carers’ issues. Consequently there is now a responsibility to support carers - get in touch with local jobcentre plus and they may provide crèche and training to get back into work.

Events: Just received funding to put on trips for families including:

- a holiday to Butlins for 8 families - first come first served

- a day out on a campsite by coach, day at the seaside, winter party around Christmas time

- Laughter workshop for parents for which there will be a crèche.

- There will be Massage, pampering, manicures, etc to phone to book.

Carers week is 13th to 18th June, there will be series of events: starting off with a sponsored walk along the Thames on the 13th, 10 miles, it costs £2-£3 to take part, try to get sponsors but don’t worry if you can’t. On Tuesday 15th council putting on a carers conference behind town hall, information, on Thursday 17th carers centre having a BBQ between 11am-3pm. Will have therapies there, sun sessions, exercise and dance, at the carers centre and will have a Turkish room and some good food.

Parents asked for:

- for more info about the services. The Carers centre will be sending info out about this but do not have the funding to send too many mailouts. Parents requested email contact and parents were asked to please send in their email addresses for regular updates.

- a trip to go to Thomas the Tank Engine theme park as its so difficult to get to. Maggie said she’d look into providing the coach and parents pay to get in -

- a trip to Foxleays in Hampshire

- trips to places in London

To use the carers centre you must complete the registration pack.

3. Presentation from Elizabeth Walsh-Pujante, Senior Advice & Information officer from Resource centre at the Hackney Ark

Resource Centre at the Ark is a one-stop shop for parents of disabled children. An informal space which has a library, softplay area, learning aids for those with difficulties, 3 information and advice officers. It’s open Mon-Wed 10-1pm then 2.30-4.30pm Thurs and Fri they are available on the phone 020 7014 7005 Resource email address: resourcecentre@hackneyark.chpct.nhs.uk

Parents need to be referred by a professional. They try to make the area a nice and warm welcoming space for parents for drop in sessions. Children can be entertained in the softplay area. 2 interview rooms for a private and confidential space to discuss personal issues. The ethos is ‘our doors are open’, if we’re busy carrying out research we’ll make an appointment for you. Drop in and/or book appointments - interpreters available if needed. We have an array of journals and leaflets that we keep up to date and parents suggestions are welcome to add to this. If you’ve got a question, enquiry , any difficulties you or child has or info on a service and don’t know how to get it or how services work, the impact supporting your child is having on your family this is a good place to start. Alongside carers centre we specialise in looking at needs of children with SEN. Keep our telephone number in our purse as it’s a useful number to have.

- Parent asked about what different types of software for children is available? One which creates a visual timetable, Software to enhance font and texts, Big keyboards and mouse, Specialist mouse for those who have mobility issues, a text pen which scans through text and reads out loud what it says.

- Parents asked how parents are kept updated?

All of the services are restricted by resources, time is required to plan and mail out to potentially 2000 carers and is hard to do at short notice about all time limited information . Can families please give their mobile and telephone numbers and email addresses so that we can sent out up to the minute information. When we develop a website for the Key and resource centre we can put time limited service information on this and parents will need to access it regularly.

4. Presentation from Susan Crocker, Project Manager of CAMHS service at the Ark.

“On my last visit you talked to me about siblings, you gave fantastic feedback and there is now a very successful Adolescent sibling club - leaflets and referral forms available today. This includes anger management, relaxation. Thank you very much for your very helpful feedback which helped develop this service.

Mental health means emotional wellbeing of your children. There is a permanent psychiatrist, family therapist, child psychotherapist, play therapist assistant psychologist and a researcher. It’s all part of the statutory service. We have to produce information for stats so please fill in this form about today’s presentation.”

Anyone can refer to this service, self referral or via a professional. It’s for 0-19 year olds living in Hackney or City. CAMHS only see children who also have profound learning difficulties or physical disabilities who need a various professionals in a multi-diciplinary team. Usually see everyone within 5 weeks of contacting the service with around 40 referrals a month. Priorities are for children who are harming themselves or a risk issue.

We have: Parenting Group based on Webster Stratten (a national programme) which has been developed so that it works for disabled children and their needs around communication. Messy play groups, Autism groups, Early Bird the national autistic society programme for parenting and intervention in autism. Have link with someone for adult learning disability team at St Leonards to see which is the best service for the child.

Working closely with paediatricians who are all linked to a psychologist gives a readiness to families for services. Making sure psychology and mental health is at forefront of services at the Ark so that there’s no stigma as people are parenting under difficult circumstances. Families are seen for up to 15 sessions, sometimes working with you at home, or in schools so flexible to needs of families. Reasons for referral are often: Behaviour, learning (we give a formal assessment), emotional/mental health concerns, toileting, feeding, ADHD, medication possible for severe sleep or behavioural difficulties. Informal work with families, having a space to think about their circumstances, parents own emotional lives and the impact on the children, there are many other compounding issues, including housing, immigration issues, etc. Mainly this is coming to terms with disability and its impact.

All professionals are well trained, to make sure we’re offering you the best treatments. Sometimes a parent’s depression and anxiety can predate the child with disability so we work with adult services so parents can get the right services to best support their child. All work is confidential unless there was a safety issue about the child.

- Many parents were very excited about these services as many didn’t realise they existed.

- A Parent said she is shocked and disappointed that she didn’t know that these services were available, her child is almost six and has always had difficulties playing why hasn’t someone referred her or told her? She’s talked to her doctor so many times, if the paediatrician doesn’t tell me of these services how do I know? Answer: There’s not an automatic link from eg. school, a referral needs to be made. Leaflets are available here to take away with you on sleep advice, toilet training, playing with your child, managing difficult behaviour, feeding.

- A Parent asked about the DNA policy: If you Do Not Arrive for two meetings without cancellation within 24 hrs of appointment we take you off the service. Parents were assured that the team is relaxed about this we know families have got lots of things on their minds, you will be sent a reminder text a week before.

- Parents requested a text a day before and to state the name of the team providing the appointment.

- A Parent requested to have speech and language therapy again. Best to phone up for advocacy central speech and language therapy office, we’ll confirm the number as they’ve temporarily moved this week. Hackney Ark speech and language therapy number is 020 7014 7060.

- Parent said she’s disappointed that no one has ever referred her to this service. She’s talked to her doctor so many times but no one’s ever referred me.

5. Groupwork to discuss What services parents have used and What they would like to have: 20 parents split into 3 groups:

Parent Feedback on services used included:

Hackney Families Together monthly meetings which are very useful in terms of providing information. Hackney carers centre, supportive group meetings for carers. Huddleston centre providing trips, films, daughter still goes there. The Key informs on services which are helpful. Very happy with hackney careers centre. Portage service, Hackney Ark, Psychology, IT, audiology, resource and info centre, Hackney parent partherhsip for Key, HFBU for short breaks, Evergreen, kids adventure, Huddleston, Laburnum boat club, Britannia leisure services. Key annual review, audiology, occupational health, Earlybird, coffee mornings, short breaks in 100 hours, Sure start toy library, HFBU picnics and events, Saturday club specialist toy library, Millfields monthly autism group, referrals and health visitor from GP. Ark resource very helpful, Keycard for swimming is excellent service, psychology very efficient and solve problems for some, speech and language therapy, physiotherapy, portage good , OT, audiology very good, community nurse good service, premature baby clinic good but always have to ask to get referral. Carers centre have good activities and parties and benefits advice very good, short breaks. Connections, parent partnership, toy library in ark good but doesn’t have many toys.

Parent feedback on what services they would like

More specialist workers as a lot of people in the borough need services, more integrated schools, more services likes these, more short breaks respite and holidays. A struggle with trying to get the school bus service for her son at primary school. Not enough speech and language or physiotherapy sessions. Can’t get short breaks for her daughter who is now 19 - this is now handled by Hackney council but she cant get through to them by telephone. Need better communication between professionals of the services. Need professionals to do more referrals by themselves rather than parents almost begging them for them. Other parents tell you about services but professionals should be making these suggestions of trying the services available. Some parents don’t get all the letters from professionals, GPs get the copies, we need more reminders of the appointments more follow up on appointments, many haven’t seen anyone after several months or a year. Always have to ask to get referral at the premature baby clinic. Toy library in Ark doesn’t have many toys.

Grapevine Slot

- Parents can check Hackney Carer Centre website to see the minutes for all these issues.

- For parent attending transition steering group. She’s written a report to say there is a transition guide available for any child coming up to 14 years. There are 3 workers based at the Ark to help children through transition.

- Adolescent Sibling group running again in Half term. Well done to people delivering group - flyers and booking forms available here today

- We’ll be in touch about the next meeting dates. We’ve been looking into having an evening meeting and will let you know next week.

- HiP parent forum for parents and carers of disabled children are celebrating their first birthday party with a lunch at their Annual General Meeting on Saturday 8th May at the Bathhouse Children’s Centre, Shacklewell Lane, E8. You must book a crèche place in advance if you would like a place in it.

- HFBU have leaflets here on A Parent’s Guide to Sources of Low Cost Counselling services.