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

  2. 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

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

  4. 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

  5. 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

  6. 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

  7. National Service Framework NS Wa

  8. 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

  9. 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 • Vocational rehabilitation • Equipment and accommodation • Personal care and support • Palliative care • Support for family and carers • Care during admission to hospital or other health and social care settings

  10. 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

  11. 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

  12. 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

  13. How ???

  14. Information Questionnaire Representation

  15. Ways to participate…… Consultation Home Visit Email Post Telephone

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

  17. 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

  18. 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

  19. What made GOOD for you? hospital

  20. What made BAD for you? hospital

  21. Adapted questionnaire page Provided Provided Provided Provided

  22. 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 About the participants

  23. 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

  24. Consultation Event Massage Lunch Celebrity memorabilia raffle Relax Socialise

  25. Raising the profile

  26. 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

  27. Consultation Event

  28. Consultation Event

  29. 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

  30. Whickham Villa

  31. 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 Milton Keynes

  32. 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 Oxford

  33. 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 Nottingham

  34. Participants Family members and/or carers Professionals Many positive comments about current services but the following highlight where changes need to be made Feedback from:

  35. 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 (1)

  36. 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 participants (2)

  37. 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 (1)

  38. 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 families and/or carers (2)

  39. 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

  40. 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 Comments from professionals

  41. 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

  42. Self Sustaining Groups

  43. Social Network

  44. 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

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

  46. Questions

  47. Contact Details Kristina Atkins katkins@ace-north.org.uk Steve Carroll scarroll@ace-north.org.uk Sue O’Brien obrien@ace-centre.org.uk