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Main Title 3 pt Subtitle 28 pt No Speech but Lots to Say!! Kristina Atkins & Steve Carroll ACE Centre North Sue O’Brien ACE Centre Advisory Trust.

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Presentation on theme: "Main Title 3 pt Subtitle 28 pt No Speech but Lots to Say!! Kristina Atkins & Steve Carroll ACE Centre North Sue O’Brien ACE Centre Advisory Trust."— Presentation transcript:


2 Main Title 3 pt Subtitle 28 pt No Speech but Lots to Say!! Kristina Atkins & Steve Carroll ACE Centre North Sue O’Brien ACE Centre Advisory Trust

3 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

4 No Speech but Lots to Say! Newcastle Liverpool Oldham Nottingham Oxford Milton Keynes

5 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

6 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

7 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

8 NS Wa National Service Framework

9 Launched in 2005 10 year implementation plan Raise standards of treatment Promote quality life Promote independence Improve support across Health and Social Services

10 NSF 11 Quality Requirements 1A person Centred Service 2Early recognition followed by prompt diagnosis and treatment 3Emergency & specialist rehabilitation 4Early and specialist rehabilitation 5Community rehabilitation and support 6Vocational rehabilitation 7Equipment and accommodation 8Personal care and support 9Palliative care 10Support for family and carers 11Care during admission to hospital or other health and social care settings

11 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 3 rd most common reason for a GP visit Hundreds of neurological conditions

12 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

13 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

14 How ???

15 Information QuestionnaireRepresentation

16 Ways to participate…… Email Home Visit Telephone Post Consultation


18 Questionnaire developed to: Find out views on current services from: People with a neurological condition and a communication impairment Participants families Participants carers

19 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

20 Developed to discuss issues and express opinions -Topic -Options -Visual scale ( Joan Murphy,AAC Research Unit, Stirling University) Talking Mats

21 What made GOOD for you? hospital

22 What made BAD for you? hospital

23 Adapted questionnaire page Provided

24 About the participants So far questionnaires completed by participants and their families, conditions include:- Cerebral Palsy Stroke Parkinsons Disease Multiple Sclerosis Huntingdon’s Disease Friedreich’s Ataxia Neurferritinopathy Undiagnosed Brain Disease


26 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

27 Consultation Event Lunch Massage Celebrity memorabilia raffle Socialise Relax


29 Raising the profile

30 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

31 Consultation Event


33 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

34 Whickham Villa

35 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

36 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

37 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

38 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

39 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

40 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

41 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

42 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

43 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

44 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

45 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

46 Self Sustaining Groups

47 Social Network

48 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

49 Dissemination Results of Questionnaire Consultation Toolkit Communication Matters NAEP ACE Centres Network Days LTNC Website PCT & Local Authorities Regional conferences

50 Questions

51 Contact Details Kristina Atkins Steve Carroll Sue O’Brien

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