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Main Title 3 ptSubtitle 28 ptNo Speech but Lots to
Say!!
Kristina Atkins & Steve Carroll ACE Centre North
Sue O’BrienACE Centre Advisory Trust
No Speech but Lots to Say!!
• 3 year project• Commenced April 2006• Funded by the Department of Health
Section 64• Delivered jointly by the two Centres• Across 6 regions• National Project
No Speech but Lots to Say!
NewcastleLiverpoolOldham
NottinghamOxfordMilton Keynes
Project Objectives
• Identify and engage a minimum of 8 participants from each of the six regions
• Individuals who have – Little or no speech– Long term neurological condition– Keen to influence service provision
• Comment on the National Service Framework for Long Term Neurological Conditions
Project Objectives
• Identify and engage Health and Social Care policy makers
• Secure their ongoing commitment – Consulting with the service user group on the
implementation of the NSF for LTNC– Creation of an implementation group to be
sustainable beyond the life of the project
Outcomes
• Consultation / Involvement Toolkit– A working set of principles and guidelines– To engage hard to reach groups of people
• Little or no speech
– Sustainable consultation groups• Service users• Service provider• Information highway
NS
Wa
National Service Framework
National Service Framework
• Launched in 2005 • 10 year implementation plan• Raise standards of
treatment• Promote quality life• Promote independence• Improve support across
Health and Social Services
NSF 11 Quality Requirements
• A person Centred Service
• Early recognition followed by prompt diagnosis and treatment
• Emergency & specialist rehabilitation
• Early and specialist rehabilitation
• Community rehabilitation and support
2 Vocational rehabilitation3 Equipment and
accommodation4 Personal care and
support5 Palliative care 6 Support for family and
carers7 Care during admission to
hospital or other health and social care settings
Background
• 10 million people across the UK have a neurological condition
• Some conditions are present from birth• Others caused by illness or injury account
for 20% of all acute hospital admissions• 3rd most common reason for a GP visit• Hundreds of neurological conditions
Background
• Over 150,000 people have a stroke every year
• 1 in 4 women and 1 in 12 men will suffer a migraine throughout their lives
• Over 5000 people live with MND• 1 in 500 people are diagnosed with
Parkinson’s Disease
Background
• Approx 350,000 people across the UK need help with daily living as a result of a neurological condition
• 850,000 people care for someone with a neurological condition
Information
Questionnaire Representation
Ways to participate……
Home Visit
Telephone
Post
Consultation
Questionnaire developed to:
Find out views on current services from:
• People with a neurological condition and a communication impairment
• Participants families
• Participants carers
Participation
• Questionnaire needs support– Talking mats– Communication Aids– Symbol support– Family members– ACE team members– Speech Therapist
• Most people prefer to be consulted face to face, with a family member present
• Developed to discuss issues and express opinions
- Topic - Options- Visual scale
(Joan Murphy,AAC Research Unit, Stirling University)[email protected]
Talking Mats
What made
GOOD for you?
hospital
What made
BAD for you?
hospital
Adapted questionnaire page
Provided
Provided
Provided
Provided
About the participants
• So far questionnaires completed by participants and their families, conditions include:-
Cerebral PalsyStrokeParkinsons DiseaseMultiple SclerosisHuntingdon’s DiseaseFriedreich’s AtaxiaNeurferritinopathyUndiagnosed Brain Disease
Oldham
• Engaged the local support groups• Joint working with the PCT and Local
Authority• Official recognition for the NSF for LTNC
with an allocated program and resources • Implementation Group • Have your Say Day!• Good links with the GMNA
Consultation Event
Lunch
Massage
Celebrity memorabilia raffle
Socialise
Relax
Raising the profile
Liverpool
• Visited local support groups and Health Care Professionals
• CALL UP and Anita Williams SALT• Significant numbers involved• Received completed questionnaires and
started to collate the findings• ‘Have your Say Day’! Feedback• Looking to implement the NSF Group
Consultation Event
Consultation Event
North East
• Both professionals and Service Users have engaged
• Massive interest in the Project• Fantastic Neurological network• Invited to be a member of the Neurological
Alliance• Invited to speak at the Alliance’s regional
Conference and various others
Whickham Villa
Milton Keynes
• Visited local support groups• Health Care Professionals • Commissioner for LTNC involved• Received completed questionnaires and
started to collate the findings• Number of professionals hoping to use our
questionnaire to gain feedback about their own services
Oxford
• Visited local support groups and Health Care Professionals, including SLT
• Targetted hospitals and patient liaison groups• Significant numbers involved• Good liaison with family members• Received completed questionnaires and started
to collate the findings• Sharing of information about assistive
technology needs
Nottingham
• Visited local support groups and Health Care Professionals
• Number of similar projects running in this area
• Good support from societies such as Multiple Sclerosis Society
• Beginning to receive completed questionnaires
• Continuing to make contacts
Feedback from:
• Participants• Family members and/or carers• Professionals
Many positive comments about current services but the following highlight where changes need to be made
Comments from participants (1)
Participants comments:• Although there is some funding available
for care, I pay for private care• I got lots of support initially but this soon
petered out. I rely heavily on family and friends
• I was given little advice or support to keep my business going
Comments from participants (2)
• In my area there are lots of services for people with learning difficulties, but I am not able to access them
• Am on a waiting list to get my hoist serviced, it will take 6 months
• I am on a waiting list for physiotherapy, I need to keep exercising to maintain my mobility
Comments from families and/or carers (1)
In the immediate event of a stroke:• There should be a family liaison expert
available in hospital• Family involvement should be encouraged• There should be a basic symbol/photo
chart available for care, personal and social needs
• Alphabet charts should be provided
Comments from families and/or carers (2)
Support for family members:• There was no central place to ask about
welfare rights and benefits• There wasn’t any immediate support for
emotional wellbeing• No advice about talking on behalf of policy
holders – access denied• Not much information given at diagnosis
Comments from professionals
Great project but we are being asked to
audit our own services, too many questionnaires around the NSF. Needs to be ‘joined up’ thinking
Comments from professionals
• Onset of neurological condition is a very traumatic time for person and family, need to feel have support as when needed. This doesn’t always happen for a variety of reasons. Often family has to be proactive.
• MND Society has more funding than other, lesser known, neurological conditions so easier to borrow equipment
• Adult Speech Therapy services often have restricted funding for specialist communication equipment
Outcomes
• Good anecdotal information from group discussions
• Many positive comments about services but some things do need to be changed
• PCT’s and Local Authorities are working in partnership
• Raising the profile of neurological services
Self Sustaining Groups
Social Network
No Speech but Lots to Say in the Future!!!!
• Seeking additional funding to continue to 2015
• ACE Centres to continue working relationships with the PCT, LA and Neurological Alliances
• Consultation Toolkit • Implementation Groups to oversee the
process
Dissemination
• Results of Questionnaire• Consultation Toolkit• Communication Matters• NAEP• ACE Centres Network Days• LTNC Website• PCT & Local Authorities• Regional conferences
Questions
Contact Details
Kristina Atkins [email protected] Steve Carroll [email protected] O’Brien [email protected]