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

How ???

Information

Questionnaire Representation

Ways to participate……

Email

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)joan.murphy@stir.ac.uk

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 katkins@ace-north.org.uk Steve Carroll scarroll@ace-north.org.ukSue O’Brien obrien@ace-centre.org.uk