Nottinghamshire Pathfinder Project
Team
January 2014

Worst month ever was
Dec 2009 – 24 appointments in 17 days - etched on their memory forever!
Over 50 services have supported her since she was born
11 year old girl and her family
Attending 6-12 appointments a month
(each can be up to ½ a day out of school)
35 services are currently involved, with six monthly reviews, some more often

Nottinghamshire are developing a multi media approach to information provision about services/ resources for use by families & services with:-
• an integrated website is now in place building on family services directory for all services to input and to access information.
• a mobile phone ‘app’ version is available
• access to face to face support through key working/ family supporters.
• Involvement of parents/ carers & other key stakeholders in development, updates and review.

Referrals are accepted from anyone…….
• parents
• young people
• professionals involved with the child or young person
They are submitted to the Multi-agency/ integrated Hub
The referral process seeks information about:
• parental responsibility
• the child or young person’s needs
• the reason for the request
• which services/agencies are already involved
• whether a CAF is already in place

An integrated assessment & plan may be needed for a child/ young person with SEN & disabilities aged 0 to 25 with needs over & above those met at universal/targeted level, such as:-
•Severe/ complex long term needs affecting everyday life
•requiring provision & resources not normally available
•requiring intensive help & support from more than one agency
•making limited or no progress despite high levels of support
•are above statutory school age with evidence of a graduated response (appropriate interventions, support & resources, available through the Local Offer, have already been put in place.)

Stage 2
Referral
20 weeks maximum
Stage 3
My Story
4 weeks max
6 weeks max
2 weeks max
2 weeks max
2 weeks max
4 weeks max
Stage 4
My Plan

Education
Voluntary &
Community
Sector
All
About Me Multi-
Agency meeting
All
About Me
Multi-
Agency meeting
SEND
Hub
Children ’ s
Social Care
All
About Me
Multi-
Agency meeting
Multi-
Agency meeting
All
About Me
Health
Multi-
Agency meeting
All
About Me
Adult
Social Care

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Each family will be allocated a worker in the hub and spoke.
Both have a role in developing the plan
Hub: Plan coordinator to draw the plan together
Spoke: Family supporter, identified in agreement with the family from one of the services closely involved, fulfilling key working responsibilities . They will know the family well & will help gather person centred information ‘All about me’ to support EHC planning

:
The ‘All about me’ information gathered by family supporter is shared at the multi agency meeting.
This information includes:
① Relationship circle
② Working/ not working
③ Like and admire
④ One page profile.
⑤ What is important to maintain a child/ young person ’s health, safety and wellbeing.
Some children/ young people and families are also piloting a ‘Wiki’ which also holds this information

• Research with collaboration agreement in place with
University of East London
• Easy-build web site platform (Klik In) being piloted to create personalised ‘ wikis ’ with multi media technology to help tell a child/ young person’s story
• Multi perspective understanding quickly gained through photos, video, documents, text and web links
• Piloting ‘ wikis ’ with some children and young adults
• Evaluation will be undertaken across the control groups to inform our next steps
• Any services can access the ‘Wiki’ with family’s permission

• Reduce the times families explain their story
• Reflects a whole day and not just the part of it that most professionals are likely to see
• Shows simple techniques used to fit equipment or ways to help with activities or encourage independence e.g. positioning
• Shows all those supporting a child an insight into their life
Useful source of family held information for all services providing care or support

EDUCATION
Alex Holland 01623 433077
Educational Psychologist
VOLUNTARY
Downs Syndrome Association
Notts Downs Syndrome Speech Group
SOCIAL CARE
Kath Beastall- Keyworker
Children's Disability Services Meadow House
01623 433675
Ash lea school/ hydrotherapy
0115 9892744
Bleby School
01656 830203
New life (car seat)
School for Parents 0115 9586641
Dilys Whitehead-Occupational
Therapist Meadow House 01623 433077
Contract care-Short breaks away from home
-awaiting a family placement
SEN services- educational statement
Inclusion support services
Visual Impairment Team –
Sue Newman 0115 8546024
Occupational Therapist
0115 8831101
PDSS
RELATIONSHIP
CIRCLE
Mr Marshall- ENT
Claire
Godmother
Audiology Ropewalk 0115 9485591
Kate Sutton- Speech & Language
Therapist) Stapleford Health Centre
0115 8835187
Neurology
Miss Eastwood- Orthopaedics
Great Ormond St. 0207 4059200
Judith West (Teaching assistant)
Bleby School 01656 830203
Alicia, Richard
George & Millie
Family friends:
Grandad Will
Karen, Steve
Anna & Peter
Village friends
Dr Thomas- Respiratory services QMC
0115 9249924 ext. 62395
Lily (Twin
Sister)
Paul (Dad)
Hannah
Ruth (Mum)
HEALTH
Dentist 0115 9603572
GP 0115 9664120
Granny Beth
Carin4Families- short breaks at home
& overnight (Continuing Care)
Rachel Gregory- QMC
0115 9249924 ext. 62738
Chiropodist
Children's Community
Nurses (CCN'S) QMC
Fennel-
Dog
Direct payments team
Shelagh & family-
School friends
John & Rachel
(Uncle/ Aunt)
Kirsty- friend at school
OTHERS
Motability- Car
Mobility Servicesoutdoor chair/ buggy
Hoist Company – Astor
Bannerman 01242
820820
Home adaptation
Nana &
Grandpa
(Dad's parents
Live in London)
Home Oxygen company –
Air Liquide 0808 143 9993
Continence supplies
Mrs Tambe
Opthalmology CDC 0115 8831156
Dr Marder Paediatrician
CDC 0115 8831156
Jo Farquarson 0115 8831110
Physiotherapist-CDC
Cardiology
Orthotics/ physiotherapy
Children & Adolescent Mental
Health Services CAMHS
Sensory services

WORKING NOT WORKING
BUGGY: Buggy is really great & helps us get out and about.
Will soon outgrow current buggy & readjustment is needed.
BOOTS/ SPLINTS : B oots/ splints are fine. Understand ongoing arrangements for follow up/ ongoing support with Orthotics dept.
The toes on left foot are overlapping, middle toe nail is growing in a
‘V’shape and is sharp and difficult to cut.
MOVING AND HANDLING : Building work is underway on new Extension work has been fraught with problems and delays. downstairs extension (bedroom/ bathroom), which will help with moving and handling (no stairs to climb) and allow better facilities for short break support.
Home hoist has been playing up. A sling assessment is required when the hoist is functional (OT aware)
Builder has recently been changed & progress is now being made.
Out family have never had moving and handling training. Transferring in
& out of the car is becoming more challenging. This needs consideration when motability vehicle is changed, Car seat will soon need adjusting.
SHORT BREAK SUPPORT: Carin4Families overnight short breaks very helpful, the staff are really fantastic and allow Mum to catch up on some much needed sleep.
3 hour short breaks shifts don’t allow sufficient time to do anything really meaningful with sister, Lily.
Assessment has been made for contract care (24 nights away from home a year) but no family yet identified
Hannah’s is easily disturbed at night. She does not always settle back to sleep if disturbed. She is always best left to sleep and only disturbed when absolutely necessary i.e. when responding to alarm, coughing or settling Hannah if distressed.
Still waiting to find a family for ‘out of home’ short breaks on a regular basis, for the next few years.
ENT ( Ear, nose and throat) Sleep apnoea continues. Date set for ENT review

WORKING
DENTAL SUPPORT: Hannah goes to the family dentist
SUPPORT AT SCHOOL : Support at school is absolutely brilliant.
Teaching Assistant Fabulous.
CLEANING : Cleaning help creates time for the family
NOT WORKING
H hates having her teeth brushed. We need to find the best ways protect her teeth?
It is difficult for Mum to work, due to taking to school late on many mornings. There is no ‘back up plan’ in place for days off school due to ill health, other than grandparents, if they are free. A long term solution would be useful.
It would be great if short breaks service could help with small tasks in the home to support life at home e.g. ironing
LE ISURE/ HOLIDAYS: Enjoy any opportunities to socialise as a family and love going away on holiday.
We would like to have a holiday away with friends, but due to high support needs we have not found a way to make this possible.
H loves being entertained. She enjoys going out in her buggy on ‘Ad hoc’ babysitting for both girls together is difficult to organise. We rely dog walks, playing with stickle bricks and swinging on her swing heavily on grandparents. This will get more difficult in the future. This
H has a keen sense of humour and fun .
excludes us from some of the social activities we would like to join in with.
Finding leisure activities that we can take part in as a family can prove very challenging. There are probably leisure facilities that we do not know about. Any help / ideas would be welcomed.
COMMUNICATION: H can communicate, if she spoken to clearly/ slowly, face to face and given time to process questions or instructions (see communication chart). The spoken word can be successfully backed up with the use of signing, pictures and
Makaton symbols.
Finding leisure activities for to help H develop, learn and keep her body and mind active is challenging, especially in the school holidays.
It would be useful to explore if there any further communication aids that could be used at home. H sometimes grabs and pulls and this can sometimes hurt those looking after her. How do we manage this safely and understand what Holly is trying to tell us?
It has been suggested there is a possible diagnosis of ‘Autistic Spectrum disorder’. This need to be considered further to ensure H is receiving the correct help and support to assist communication & learning

Support planning: Stepping out in a Person Centred way
Example: Hannah ’s one page Profile
My name Hannah
My birthday
Jones
Jones
Han
2 March 2003
Important people to me:- Mum, Dad, Sister Lily,
Granny and Grandad, Fennel our dog. Teaching
Assistant Judith, Carin4Families team overnight short break carers (Rachel)
I like:
Routine, predictability and familiar adults
Being at home with my family and friends
Quiet time on my own
Stimulating activities at school and home
Being able to make choices
Being given some independence
I do not like:
Anything that is unexpected or unfamiliar.
To be woken from sleep at any time day or night.
When talking to me please:
Make face contact and speak slowly, clearly & in short sentences Give me at least 10 seconds to process what you have said. Do not keep repeating sentences. I understand
Makaton and use visual symbols such as picture/ photo cards If you would like me to do something say “Hannah do it’ or “It’s time for ….(bed, tea etc.)
PHOTO
What people like and admire about me
·
My relationship with dad, mum, sister & family
·
My personality & smile to melt your heart
·
My welcoming nature- a delight to be around
·
School wouldn ’t be school without me!
·
I enrich everyone ’s lives
·
I have a strong personality (and will be a strong woman!)
·
I am very affectionate with a wicked sense of humour!
My hobbies and interests- I enjoy
Playing with stickle bricks
Looking at books and listening to stories
Going on dog walks in my buggy
Swinging on my swung swing in the garden
Swimming- hydrotherapy
My care and support needs: if woken from sleep, day or night, I may have a
‘floppy episode’ and will need oxygen and my CPAP (continuous positive airway pressure). I have oxygen at night with an O2 saturation monitor. I use a salbutamol inhaler when I need help with breathing or have a cough. I have visual and hearing difficulties. I have glasses but do not like wearing them.
I use a buggy and walking frame to get around. I can also walk holding someone ’s hands. I have a tracking hoist at home. I wear orthotic boots/splints. I have a special sitting chair to help support me at the table at home/ school. I have a special car seat. I wear a supportive hip brace at night. I have a special up/ down bed and adapted bathroom. I have specialist ENT, Neurology, respiratory, orthopaedic support
RVKR May 2013 1

There are a number of different options being tested, depending upon level of responsibility a family wishes to take. These include:
•Direct Payment
•Individual Service Fund
•Independent Third Party
There will be a phased introduction. This will be supported by the Plan Coordinators and may require some independent support from a brokerage service .

• Once ‘Like and admire’ & ‘what is working/ what could be improved’ are shared, outcomes are identified for the Education, Health and Care Plan. The actions required to achieve the outcomes are agreed, along with the budget.
• This is progressed at an initial facilitated Multi agency meeting, attended by key services involved
• Timescales for further reviews/ multi agency meetings are agreed as the EHC plan is put in place
• Many reviews have been run as person- centred meetings using a ‘working/ not working’ and other such approaches/ conversations.

• Babies, children and young people with complex needs generally have very complex arrangements in place to support them.
Working in a more streamlined/ integrated way is a challenge for all involved!
• Integrated teams may well develop to support the EHC pathway and process. Voluntary sector services need to be linked in.
• Person centred tools/ conversations have worked well with services in many different settings, including voluntary sector.
• Case studies are a useful & powerful resource to help make the case for change, demonstrating unique input of each service & showing where support could be more integrated or ‘joined up.’
• Families/ young people who have tested the Wiki to date like to be empowered, holding and developing information themselves and choosing who they wish to share it with.