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Stroke and Dysphagia. Pathways & Guidelines. NICE pathway: Stroke (Acute). Community/A&E. Acute. Rehabilitation. http://pathways.nice.org.uk/pathways/stroke/stroke-overview http://publications.nice.org.uk/stroke-cg68/guidance. :10-point strategy plan. Awareness Preventing stroke
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Pathways & Guidelines
NICE pathway: Stroke (Acute) Community/A&E Acute Rehabilitation http://pathways.nice.org.uk/pathways/stroke/stroke-overviewhttp://publications.nice.org.uk/stroke-cg68/guidance
:10-point strategy plan • Awareness • Preventing stroke • Involvement • Acting on the warnings • Stroke as a medical emergency • Stroke unit quality • Rehabilitation and community support • Participation • Workforce • Service improvement http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_081059.pdf - Link to document which proposes the National Stroke Strategy.
Other links/guidelines Royal College of Physicians (2012) - comprehensive guidelines for the commissioning, organisation and delivery of stroke care. http://www.rcplondon.ac.uk/sites/default/files/national-clinical-guidelines-for-stroke-fourth-edition.pdf RCP (2008) – Speech and Language Therapy Concise Guide for Stroke http://www.rcslt.org/about/campaigns/RCP_Stroke_SALT.pdf Royal College of Speech and Language therapists (2006) http://www.rcslt.org/about/campaigns/stroke_audit_tool
SIGN GUIDLINES • non-compliance of patients on modified oral intake does not reflect lack of appropriate care • the patient has received the modified diet and drinks that have been recommended a pharmacist is involved/consulted at an early stage • multidisciplinary training programmes are in place • the timing, institution and complications of tube feeding (NG and PEG) are recorded • named professional in charge of patients discharged with NG or PEG has been identified • an oral care protocol is in place • patients with persistent dysphagia are reviewed • the relevant information has been impartedto the patient and family/carer in an appropriate format. The guideline development group has identified the following as key points to audit to assist with the implementation of this guideline: • co-morbidities and correctable risk factors are assessed on admission • nutritional risk is assessed within 48 hours of admission • screening for dysphagia takes place before any food/drink is given • screening for dysphagia in inpatients is repeated dailyfor a minimum of oneweek after initial assessment • criteria are in place to highlight the need for referral to a dietician or SLT and referral procedures are in place • documentation of nutritional management of the patient (including justification of the decision not to feed, consistency of modified diets and monitoring of food and fluid intake) is available
Risks and Effects of Dysphagia Participation: • environment • mealtime interaction • ability to participate in social meal times • ability to eat in different locations • cope in differing social settings Well-being: • effects of emotional state, mood and behaviour Risks: Individuals who do not have appropriate dysphagia managementare at high risk of: • aspiration • developing respiratory infection • choking and death • poor nutrition and weight loss • poor health • anxiety and distress within the family • hospital admission or extended hospital stay • Reduced quality of life.
Ethical Issues • The most useful diet modification strategy could depend on the individual patient; a patient’s own treatment preference should also be considered when deciding on modifications to their diet. • Failure to provide nutritional support for patients who have not met, or are unlikely to meet, their nutritional requirements for a long period of time (seven days or longer) has been considered unethical. • The decision to place a PEG should balance the risks and benefits and take into consideration individual patient needs. Patients should also be given the opportunity to decide whether they want to go ahead with a procedure. • Consideration of life expectancy should be taken into account, i.e. not to prolong the dying process • Patient’s and carer’s perceptions and expectations of PEG feeding should be taken into account and the benefits, risks and burden of care fully explained before initiating feeding. • Following operations which lead to their dysphagia, the patients became weaker, experienced lower self-esteem and limited their social relationships. • The patients that had received speech therapy rehabilitation all agreed that this had improved their quality of life For more information visit; • Communicating Quality 3 (of course) • http://www.rcslt.org/speech_and_language_therapy/commissioning/dysphagia_plus_intro • http://publications.nice.org.uk/nutrition-support-in-adults-cg32/guidance#enteral-tube-feeding-in-hospital-and-the-community • http://www.sign.ac.uk/pdf/sign119.pdf
Research and Fundraising Info Guidelines and resources Fundraising Speak up for stroke Help prevent stroke Help us run smoothly Work with stroke survivors Info about stroke, causes and the consequences ‘Stroke News’ FAQ’s/useful links helpline/talkstroke online community • Sheffield: • Communication support group • Reablement service • Northern stroke club (affiliated) Support Life after stroke grant UK stroke assembly
‘Confident communication’ training for family. Information services http://www.speakability.org.uk/ Support groups Online forum Publications: communication board, medical passport and picture dictionary
www.differentstrokes.co.uk/ Publications Advice Exercise classes – regain independence, optimise recovery, meet others. For people aged under 65
Peer led conversation groups For people with aphasia http://www.ukconnect.org/ Befriending services • Resources • books • DVDs, • ‘I have aphasia’ cards. Counselling Conversation partners scheme in London Training to health workers
Getting Financial Help • Tax-free benefits available: • Attendance allowance for those aged 65+ • Disability Living Allowance for those under 65 • http://www.speakability.org.uk/Aphasia+Information/speakability_getting_financial_help • Help from the Stroke Association: • Life After Stroke Grant: a one-off payment of up to £400 for stroke survivors • http://www.stroke.org.uk/about/financial-support
Employment If unable to work… • Statutory Sick Pay • Employment and Support Allowance http://www.speakability.org.uk/Aphasia+Information/speakability_employment_advice
Transport Accredited mobility centres offer information, advice and help on driving with a disability. They can carry out a full assessment of your driving skills, identify and manage problems The Blue Badge Scheme provides parking concessions http://www.speakability.org.uk/Aphasia+Information/speakability_driving_with_aphasia
Useful Links and Information Useful organisations: • Age UK • Benefit Enquiry Line • Citizens Advice Bureau • Counsel and Care • Independent Living Funds • Pensions Advisory Service Other benefits that stroke survivors may be entitled to (Stroke Association): • Income Support • Working Tax Credit • Pension Credit • Housing Benefit or help with rent • Council Tax benefit http://www.stroke.org.uk/about/financial-support
Stroke in the public eye… • Part of our professional role as an SLT is to raise awareness of the importance of communication. • Stroke Association supports the Giving Voice campaign, aiming to raise the profile of SLT. • Stroke Association’s latest campaign – informing people about TIAs • Word Stroke Organization ‘Global Bill of Rights for Stroke’ – released 2014
Events and campaigns coming your way! Act F.A.S.T campaign – new videos released for MARCH 2014 http://www.youtube.com/watch?v=WYHaSyN5eeg; https://www.youtube.com/watch?v=9KG_2OEH8UM#t=17 UK stroke assembly – 16-17TH JUNE 2014 http://www.youtube.com/watch?v=qhLoBa0fMDU Know your blood pressure day – APRIL 5th 2014 Action on Stroke month – MAY 2014 Life After Stroke Awards http://www.youtube.com/watch?v=tZTR_yza2dw
Other useful websites… • http://www.ukabif.org.uk/ (United Kingdom Acquired Brain Injury Forum) • http://www.neta.org.uk/ (North East Trust for Aphasia) • http://www.ukstrokeforum.org/about (forum for professionals working with people with aphasia, hosted by the Stroke Association) • http://www.britishaphasiologysociety.org.uk/ (Research and conferences) • http://www.crncc.nihr.ac.uk/about_us/stroke_research_network (NHS Clinical Research Network) • http://www.eso-stroke.org/ (European Stroke Organisation) • http://www.world-stroke.org/ • http://www.aphasiasoftwarefinder.org/ (TAVISTOCK database of apps and software for people with aphasia) • http://aphasiafriendly.co/free-resource-library.html (some free printable resources) • http://www.stroke.org.uk/sites/default/files/Accessible%20Information%20Guidelines.pdf.pdf (How to create resources in an aphasia-friendly way – guidelines written by members of our department for the Stroke Association)
Other dysphagia publications/websites… • http://www.rcslt.org/speech_and_language_therapy/commissioning/dysphagia_plus_intro (RCSLT resource manual for commissioning and planning SLCN services: Dysphagia) • http://www.sign.ac.uk/pdf/sign119.pdf (SIGN guidelines: identification and management of dysphagia) • https://www.wiltshirefarmfoods.com/dysphagia (prepared dysphagia-friendly meals) • http://www.simplypuree.co.uk/ (pureed meals)
Other stroke publications… • http://www.cqc.org.uk/sites/default/files/media/documents/supporting_life_after_stroke_national_summary.pdf (Care Quality Commission) • http://www.nice.org.uk/nicemedia/live/14182/64098/64098.pdf (NICE clinical guidelines for stroke rehabilitation) • http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_081059.pdf(National Stroke Strategy, 2007) • http://www.sign.ac.uk/pdf/sign108.pdf(SIGN Guidelines: Assessment, investigation, immediate management and secondary prevention, 2008) • http://www.sign.ac.uk/pdf/sign118.pdf (SIGN Guidelines: Rehabilitation, prevention and management of complications, and discharge planning, 2010)
Charities and support… • http://phab.org.uk/overview/ (residential holidays for people of all abilities, kids/adults, lottery funded charity) • http://dyscover.org.uk/ (charity providing long-term support) • http://www.motability.co.uk/understanding-the-scheme/ (cars, scooters, wheelchairs) • http://www.londoncouncils.gov.uk/services/taxicard/default.htm (London taxicard subsidy for people with serious visual or mobility impairment) • http://www.shaw-trust.org.uk/ and http://www.remploy.co.uk/ (helping people with disabilities towards employment) • http://disabilityrightsuk.org/ (information about benefits etc) • http://www.relate.org.uk/ (counselling service)
Relevant reads... • My Stroke of Insight: A Brain Scientist's Personal Journey by Jill Bolte Taylor • A Stroke of Luck: A Girl's Second Chance at Life by Juli K Dixon • A Stroke of Misfortune by John Greenridge • The Diving Bell and the Butterfly by Jean-Dominique Bauby (also a film) • Falling and Laughing: The Restoration of Edwyn Collins by Grace Maxwell • Four Minute Warning by MJ Tolley • In the Blink of an Eye by Hasso and Catherine von Bredow • My Year Off: Rediscovering Life After a Stroke by Robert McCrum • What Are You Thinking of, Dad? by Nick Wisby • A Stroke in the Family by Valerie Eaton Griffith • Less Words More Respect: My Experience with Dysphasia by Monica Clarke • The Man Who Lost His Language by Sheila Hale • The Dysphagia Cookbook by Elaine Achilles • Easy-to-Swallow, Easy-to-Chew Cookbook by Donna Weihofen, JoAnne Robbins and Paula Sullivan