Care after stroke. or transient ischaemic attack. Information for patients and their carers

Transcription

1 Care after stroke or transient iscaemic attack Information for patients and teir carers 2008

2 Tis booklet is based on te National Clinical Guideline for Stroke, tird edition, wic includes te National Institute for Healt and Clinical Excellence recommendations for management of acute stroke and transient iscaemic attack. Contents Wo te booklet is for and wat it covers 4 Principles of care for people wo ave ad a stroke or transient iscaemic attack (TIA) 4 Description of stroke and TIA 5 Assessment 7 Finding out wat is wrong (diagnosis) 7 Questions about finding about wat is wrong (diagnosis) 7 Specialist early care 8 Brain scan 8 Medication 8 A drug for trombolysis 8 Aspirin and anticoagulants 9 Statins 9 Questions about treatment 9 Oter care 12 Nutrition and swallowing problems 12 Surgery after stroke 12 Preventing complications 12 Reabilitation 13 Principles of reabilitation 13 Moving and walking 14 Speaking, writing and understanding 15 Bladder and bowel control 16 Te senses (vision, sensation and pain) 17 Getting back to a normal life 17 2 Copyrigt 2008 Royal College of Pysicians

3 Transferring from ospital to ome 18 Family involvement 19 Emotional and psycological effects of stroke 19 Transient iscaemic attack (TIA) 20 Treatment after a TIA 20 Furter tests after TIA or minor stroke 21 Prevention of furter stroke or TIA 21 End of life 22 References and guideline coverage 23 Glossary 24 Useful organisations 25 Local ealt services 25 Social services 25 Financial elp and advice 26 Voluntary and support groups 27 Te Stroke Association 27 Different Strokes 27 Connect 28 Speakability 28 Local stroke clubs 29 Carer groups 29 Addresses, telepone numbers and websites 30 Copyrigt 2008 Royal College of Pysicians 3

4 Wo te booklet is for and wat it covers Tis booklet is about te care and treatment of adults after a stroke or a transient iscaemic attack (also called a TIA or mini-stroke ). It is written for adults wo ave ad a stroke or TIA and teir families and carers, but it may also be useful for anyone wit an interest in te condition. Te booklet aims to elp you understand te care and treatment options tat sould be available in te NHS. It does not describe stroke or TIA or te tests or treatments for tese in tecnical detail. If you or someone close to you as a stroke, te ealtcare team sould discuss te care and treatment options wit you. Tere are examples of questions you could ask in tis booklet to elp you wit tese discussions. Some sources of furter information and support are on pages Medical terms printed in bold type are explained on page 24. Te information in tis booklet is based on detailed clinical guidelines for stroke produced primarily for ealtcare professionals and publised in te Royal College of Pysicians (RCP) National clinical guideline for stroke, 3rd edition, 1 wic includes te recommendations from te National Institute for Healt and Clinical Excellence (NICE) guideline on te management of acute stroke. 2 Te broad areas covered by te RCP guideline 1 and by te NICE guideline 2 are sown on page 23. Principles of care for people wo ave ad a stroke or TIA Treatment and care after a stroke or TIA sould take into account your personal needs and preferences. You ave te rigt to be fully informed and to make decisions in partnersip wit your ealtcare team. To elp wit tis, tey sould give you (and were appropriate your family or carer) information you can understand and tat is relevant to your circumstances. 4 Copyrigt 2008 Royal College of Pysicians

5 Tey sould take account of specific issues wic affect many people wit stroke suc as speec and language difficulties, and problems wit attention, concentration and memory wic make understanding and retaining complex information difficult. Tis is in addition to any problems wit sigt, earing, learning disabilities or Englis language wic may ave been present prior to te stroke. All ealtcare professionals sould treat you wit respect, sensitivity and understanding, and explain stroke and TIA and te treatments to you simply and clearly. Any treatment being suggested sould take account of any religious, etnic or cultural needs you may ave. If you are unable to understand a particular issue or are not able to make decisions for yourself, ealtcare professionals sould follow te advice tat te Department of Healt as produced about tis. You can find tis by going to te Department of Healt website ( Healtcare professionals sould also follow te code of practice for te Mental Capacity Act For more information about tis, visit and see section 6.35 in te full guidelines. 1 Sometimes a person wo as ad a stroke needs urgent treatment, and te medical staff may not ave time to fully discuss wat is involved wit you or your family or carers beforeand. In tese circumstances, detailed discussions and explanations may ave to wait. Description of stroke and TIA A stroke occurs wen te blood flow to part of te brain is cut off it is a brain attack (in te same way tat a eart attack appens wen te blood supply to te eart muscle is cut off). Witout a blood supply, brain cells can be damaged or destroyed because tey may not receive enoug oxygen. Copyrigt 2008 Royal College of Pysicians 5

6 Te brain controls everyting tat te body does, so a stroke can affect many different functions of te body depending on wic part of te brain is involved. Te symptoms of stroke can include numbness, weakness or lack of movement on one side of te body, slurred speec, difficulty finding words or understanding speec, sudden problems wit vision, confusion, and a severe eadace. A stroke appens suddenly and te effects are experienced straigtaway. Tere are two main types of stroke. Te most common type (an iscaemic stroke) is wen one of te blood vessels leading to or in te brain is blocked. Te second type ( aemorragic stroke) is wen a blood vessel in te brain bursts, causing bleeding into te brain. A transient iscaemic attack (TIA), often called a mini-stroke, appens wen te blood supply to part of te brain is interrupted for a very sort time. Te symptoms are te same as for a stroke, but tey usually last only a few minutes or ours, and ave disappeared completely witin 24 ours. Te NICE guideline 2 on stroke describes te early treatment tat a person wo as ad a stroke or TIA sould receive, wereas te RCP guideline 1 describes wat sould appen wen you first ave a stroke, ow services sould be organised, reabilitation and specific treatments in te first six monts and beyond. It also covers ow to prevent aving anoter stroke or TIA called secondary prevention. (See also page 23.) Te recommendations are based on evidence about best medical, nursing and terapy practice. 6 Copyrigt 2008 Royal College of Pysicians

7 Assessment Finding out wat is wrong (diagnosis) Anyone wo suddenly as symptoms tat migt be caused by a stroke or TIA sould be assessed by a paramedic or oter suitable person as soon as possible (before tey arrive at ospital) using a test suc as FAST (Face Arm Speec Test). A ceck sould be made to rule out low blood sugar (ypoglycaemia) as a cause of te symptoms. On arrival at A&E or te stroke unit, te diagnosis of a stroke or TIA sould be cecked using an accepted test suc as te Recognition of Stroke in te Emergency Room (ROSIER) test. Questions about finding out wat is wrong (diagnosis). Some suggestions for questions you may want to ask. Please give me more details about wat tests are being done. Wat do tese tests involve? Were and wen will tese tests be carried out? How long will it take to get te results of tese tests? Wat did te tests sow? Can you sow me my brain scan and explain wat it sows? Copyrigt 2008 Royal College of Pysicians 7

8 Specialist early care for people wo ave ad a stroke If it is suspected tat you may ave ad a stroke, you sould be admitted to a specialist stroke unit, eiter directly or from A&E. Brain scan All people wo ave ad a stroke sould ave a type of brain scan. Tis sould appen as soon as possible, and definitely witin one our of admission to ospital, if any of te following apply: your symptoms suggest tat you may benefit from treatment to dissolve a blood clot ( trombolysis ) or reduce blood clotting you were taking drugs to reduce blood clotting (anticoagulants) before te stroke you are prone to bleeding you are unconscious your symptoms are varying or getting worse for no obvious reason you ave a problem wit your eyes called papilloedema, a stiff neck, or fever you ad a very bad eadace wen te stroke symptoms began. Oterwise te brain scan sould be performed witin 24 ours of your symptoms starting. Medication A drug for trombolysis A clot-busting drug called alteplase may be used if your brain scan indicates tat it migt elp and ospital staff ave ad training for its use in stroke. Tis drug treatment is known as trombolysis. However, treatment wit alteplase must begin witin tree ours of stroke symptoms starting, and it sould not be given to people under 18 or over 80 years old. 8 Copyrigt 2008 Royal College of Pysicians

9 Aspirin and anticoagulants Tere are two types of drugs wic are used to reduce te risk of blood clots forming (te cause of most strokes). Te decision as to wic sort you sould ave will be made after careful assessment by your medical team. Everyone wo as ad a stroke sould be given aspirin as soon as possible, and definitely witin 24 ours of te stroke starting, unless your brain scan sows bleeding in your brain. You sould continue to receive daily aspirin for two weeks or until you leave ospital, wicever is sooner. Your specialist sould ten discuss future treatment wit you. Te table overleaf outlines te use of aspirin and anticoagulants. Statins If you were taking a drug called a statin before your stroke to reduce your colesterol, you sould continue taking it If you weren t already taking a statin your souldn t be started on one immediately after a stroke. But if your stroke was caused by a blood clot and you ave a blood colesterol level of 3.5 mmol per litre or more, you sould be started on a statin before you are discarged from ospital. Questions about treatment. Some suggestions for questions you may want to ask your ealtcare professional. Wy ave you decided to offer tis particular type of treatment? Wat are te pros and cons of aving tis treatment? Wat will te treatment involve? How will te treatment elp? Wat effect will it ave on symptoms? How long will it take to ave an effect? Are tere any risks associated wit tis treatment? Are tere any oter treatment options available apart from te one you re recommending? Is tere any written material (like a leaflet) available about te treatment? Copyrigt 2008 Royal College of Pysicians 9

10 Te use of aspirin and anticoagulants. Cause of stroke Oter considerations Blockage of a blood vessel in te brain (iscaemic stroke) Te person must not ave bleeding in te brain. Blockage of a blood vessel Blockage of a blood vessel Blockage of te veins of te brain Blockage of a blood vessel Bleeding in te brain (aemorragic stroke) Tere is a ig risk of te person developing a type of blood clot called a venous tromboembolism. Te person also as blood clots in teir legs (deep vein trombosis) or lungs (pulmonary embolism). Te person migt also ave a bleed in te brain. Te person: was taking anticoagulants because tey ave replacement valves in teir eart, and is at risk of bleeding in te brain. Te person also as deep vein trombosis or pulmonary embolism. Bleeding in te brain Te person was taking anticoagulants before teir stroke. 10 Copyrigt 2008 Royal College of Pysicians

11 Treatment* Give aspirin as soon as possible, and definitely witin 24 ours of te stroke starting. Te person sould continue to receive daily aspirin for two weeks or until tey leave ospital, wicever is sooner. Teir specialist sould ten discuss future treatment wit tem. If a person as ad indigestion in te past associated wit aspirin, a type of drug called a proton pump inibitor sould be offered as well as aspirin. Anyone wo as been sown to be allergic to or intolerant of aspirin sould be given anoter antiplatelet drug, suc as clopidogrel, instead. Te patient may be given anticoagulants, and sould be monitored closely. Tey sould normally be given anticoagulants rater tan aspirin. Tey sould be given anticoagulants unless tey ave anoter condition tat would make tis unsafe. Teir anticoagulant treatment sould be stopped. Tey sould be given aspirin instead. If it is safe tey can start taking anticoagulants again after a week. Tey sould be given anticoagulants rater tan aspirin. As an alternative to drugs, a device called a caval filter may be used. Tey sould ave treatment to reverse te effects of te anticoagulants. *Normally a person wo as ad a stroke sould not be given anticoagulants unless tere is a particular reason to do so, as listed ere. Copyrigt 2008 Royal College of Pysicians 11

12 Oter care Nutrition and swallowing problems You sould be monitored by your ealtcare team to make sure tat you are getting enoug food and fluids wen you are in ospital. You may ave difficulty swallowing after aving a stroke. You sould ave your swallowing assessed by a trained ealtcare professional before you can ave any food, liquid or medication by mout. If you are unable to swallow, you sould: be given food and fluids by a tube witin 24 ours of being admitted to ospital be given medication by tube or suppository. Your swallowing sould be assessed by a specialist, preferably witin 24 ours and definitely witin tree days of being admitted to ospital. After tis assessment, you sould be given food and fluids in a consistency or form tat you can swallow. Furter tests may be carried out if you continue to ave problems. Surgery after stroke A small number of people wo ave ad a stroke will need an operation to elp tem recover. Preventing complications If you ave been severely affected by te stroke you may need: a special mattress designed to prevent pressure sores elp to find comfortable positions so tat you do not damage te side of your body affected by your stroke special equipment suc as a oist to ensure tat you are moved safely 12 Copyrigt 2008 Royal College of Pysicians

13 cest pysioterapy to keep your lungs clear of infection. As soon as you are able you sould be elped to sit out of bed in an appropriate cair for sort periods of time. Reabilitation Principles of reabilitation Stroke reabilitation professionals sould assess wat your needs are and ten discuss wat tis means and work wit you to elp acieve as good a recovery as possible. Tis will be based on teir assessment, your wises and te severity of your stroke. All members of te team sould provide a consistent approac so tat you ave te same advice and are given as muc opportunity as possible to practise wat you are advised to do repeatedly and in different settings. Te guidelines 1 recommend te following: In te early stages you sould ave as muc terapy appropriate to your needs as you are willing and able to tolerate, and a minimum of 45 minutes every day in te early stages. Reabilitation following your stroke sould begin immediately. You will need care and advice from professionals wit expertise in stroke reabilitation. Tis will be designed to elp you: regain abilities lost or impaired after te stroke, eg walking, speec or use of your arm find new ways of overcoming te disabilities tat are slow or failing to recover, suc as learning to write wit te opposite and cope wit problems wit every day activities (referred to by te team as activities of daily living) including personal activities suc as dressing, domestic activities suc as cooking, and community activities suc as sopping, obbies and employment as appropriate to your circumstances before you ad your stroke. Copyrigt 2008 Royal College of Pysicians 13

14 Furter reabilitation may involve: staying in te ospital were you were first admitted transferring to a reabilitation unit elsewere being discarged ome wit experts in stroke reabilitation treating you at ome, or visiting an outpatient department or day ospital as appropriate. Te rate of recovery tends to be most rapid in te first few weeks after stroke altoug reabilitation can continue for many monts. Wen reabilitation no longer produces any marked improvement, it will usually be stopped but you sould be reassessed at least once a year to see if a furter course of reabilitation would elp. Just because terapy as stopped does not mean tat you cannot continue to work on your own recovery, wic may continue slowly for many years. Moving and walking Your ability to move sould be assessed as soon as possible after admission. Te treatment you receive will depend on ow muc movement you ave lost as a result of your stroke and on ow active you were before you ad it. Most people can sit up fairly quickly and will recover te ability to walk. Sometimes te stroke results in strange sensations, pain, numbness, weakness and muscle spasms. Te rate and extent of recovery will be individual and varied, but improvement is usually most noticeable witin te first six monts. Assessment of your ability to move is usually carried out by a pysioterapist wo sould: tell you and your carer te results of te assessment decide wit you and te stroke team ow to elp you regain as muc movement as possible if necessary, teac your carer tecniques for elping you to move safely in bed and around your ome. 14 Copyrigt 2008 Royal College of Pysicians

15 As you improve you may need advice on: weter it is safe to attempt walking and weter you sould try to walk alone or wit support from staff or your carer weter you migt benefit from aids suc as a foot support to elp you walk safe, suitable aids to elp you get about (eg te correct kind of weelcair) te correct exercises to practise. Speaking, writing and understanding Stroke can affect your ability to speak or understand wat is being said (known as apasia), and reading and writing may be difficult or impossible. You may be unable to speak clearly because of muscle weakness (known as dysartria) or difficulty coordinating te complex placement of te speec muscles, eg struggling to place te tongue correctly in a sequence of sounds (known as apraxia or dyspraxia). Eac individual may be affected in different ways suc as: difficulty in speaking or producing any sounds at all problems in tinking of te rigt words to speak or write trouble understanding speec or writing use of nonsense words problems understanding umour difficulties wit social rules suc as taking turns to speak slurring of speec, sounding as if you are drunk gestures and facial expressions affected by paralysis. Te effects of your stroke on speec, reading and writing sould be fully assessed by a speec and language terapist wo will ten: elp you try to overcome problems wit speaking, reading, writing or understanding wat people say to you Copyrigt 2008 Royal College of Pysicians 15

16 advise your relatives and te staff looking after you on te best ways of communicating wit you consider your suitability for specific treatment programmes and monitor your progress. If you ave long-term language difficulties, your speec and language terapist can provide advice about weter you migt benefit from furter terapy, suc as group communication programmes, and aids tat may elp you to communicate. Bladder and bowel control It is quite common to find tat you are unable to control your bladder and/or bowel movements after a stroke. Difficulty controlling wen you pass urine is called urinary incontinence. Difficulty wit bowel control is called faecal incontinence. Te nursing staff sould assess te causes and discuss te best way of managing ow to minimise te effects of incontinence and produce a plan for you individually. If you already ad a cateter prior to te stroke it is likely to still be required in te long term. If you ave not ad a cateter before, owever, it sould only be used if you are unable to pass water, not as a means of treating incontinence. Tis can be distressing if you are embarrassed but tere are alternatives wic are more appropriate as it is often only a problem in te early stages. Most patients regain bowel and bladder control in a few weeks. If you still ave problems wen you leave ospital, you and your carer can get advice from te ospital, your GP or community continence nurse advisor about: treatment and management of incontinence te range of equipment available to elp wit incontinence local services available to elp you manage at ome wat equipment will be provided, by wom and wo will pay for it. 16 Copyrigt 2008 Royal College of Pysicians

17 An organisation call Incontact runs a elpline staffed by continence specialist nurses (contact details on te back of tis booklet). Te senses (vision, sensation and pain) Te senses can be affected in a number of ways after stroke. As wit te oter problems following stroke, tese may recover spontaneously. Sometimes people lose some or all of te ability to see out of part of one or bot eyes (called emianopia). Tis sould be assessed and if tis causes practical problems you sould be taugt ways of compensating. Tere can be problems wit pain especially in te soulder and it is important tat you tell staff about any pain you are experiencing so tat tey can find out te cause, put in place measures to prevent it (eg positioning your arm or using supports), give pain relief, or consider oter treatments if appropriate (suc as ig intensity nerve stimulation or strapping). If it is a more general pain and persists for several weeks it may be necessary to see a specialist in pain management. You may experience a loss of sensation down one side. Tis sould be assessed and, especially if you are able to move te limb but it is numb, you need to be sown ow to take care of it to avoid injuring yourself accidentally. Getting back to a normal life It is common after a stroke for some people to ave difficulty wit common everyday activities suc as dressing, cooking, sopping, obbies and employment. You sould be assessed by an occupational terapist for tese problems to find out wat sort of terapy will best elp you. Tis may involve: advice on strategies to avoid doing tings tat are unsafe (eg getting into too ot a bat, cutting yourself saving) practising some of te activities wit elp and guidance from te terapist and nursing staff (eg dressing, cooking) Copyrigt 2008 Royal College of Pysicians 17

18 special equipment to make activities like feeding, dressing or bating easier for you arranging for adaptations to be made to your ome to make it easier for you to carry on as normal a life as possible. Tis may mean tat te occupational terapist visits your ome to see wat is required, so tat arrangements can be made for any work to be carried out by your local social services department before you go ome. If you are a driver you will be advised about driving and informed tat continuing to drive is dependent on satisfactory recovery. If you ave a group I licence (ie ordinary licence) you sould be informed tat you must not drive for a minimum of four weeks. If you ave a group 2 licence (eg for a eavy goods veicle) you must inform te Driver and Veicle Licensing Agency (DVLA) and you will not be allowed to drive under tis licence for at least 12 monts. Transferring from ospital to ome Wen you are transferred eiter ome or to anoter ospital or care ome, it sould appen witout delay and te ealtcare teams in ospital and in te community sould make sure tat all te information is transferred, including medication, so tat you don t ave to give complex information to many different people. You sould be involved in making decisions about te transfer and be offered copies of transfer documents. You sould not be discarged early from ospital to non-specialist services unless tere is continuing involvement from te specialist stroke services. You sould be told ow to contact tese specialist services wen you leave and ealt and social services sould ensure tat you can access support and advice easily, for example using a single point of contact. 18 Copyrigt 2008 Royal College of Pysicians

19 Family involvement It is up to you to decide ow muc you want your family members to be involved in discussions about te stroke and ow to manage afterwards. If you decide tat you want tem to be included in all important decisions, tey sould be given detailed information about your stroke, and about ow muc recovery you can expect to make. Tey sould be taugt ow to elp and support you and ow to look after you, and wat to do to avoid your aving anoter stroke. Tey sould be given clear guidance on ow to seek elp if problems develop. Emotional and psycological effects of stroke It is very common for strokes to cause problems wit tinking, concentrating, remembering, making decisions, reasoning, planning and learning. After a stroke nearly everyone feels tired and it may take many monts to regain normal energy levels. You may also ave problems wit your mood. Tese may take te form of feeling emotional, anxious, unappy or depressed (sometimes crying or lauging uncontrollably), or involve difficulties relating to oter people. You and your relatives sould receive advice and elp about all tese problems, including: opportunities to talk about te impact of your stroke on your life, including family and sexual relationsips explanations about te possible psycological effects of stroke cecking for depression and anxiety witin te first mont of your stroke ongoing review of any problems wit depression or anxiety, or your emotions. For many people, symptoms settle down over time and do not necessarily improve wit drug treatments. However, if your symptoms are severe or last a long time, you may benefit from a referral to a clinical psycologist or Copyrigt 2008 Royal College of Pysicians 19

20 psyciatrist for expert elp. Tis service is part of te NHS and you can be referred by your GP or te stroke pysician in carge of your care. Transient iscaemic attack (TIA) Treatment after a TIA If you ave recently ad stroke-like symptoms tat disappeared quickly, tey could ave been caused by a TIA. A TIA sould be treated as an emergency. You sould get medical advice as soon as possible because you may ave a greater risk of aving a major stroke in te near future. You sould ave your risk of stroke assessed as soon as possible wit a scale tat takes into account your age, blood pressure, and type of symptoms and ow long tey lasted (ABCD 2 score). An ABCD 2 score of 4 or above means tat you ave a ig risk of stroke in te near future. If you ave ad two or more TIAs in a week and are taking anticoagulants you are at ig risk. If you are at ig risk of stroke, you sould be started immediately on daily treatment wit aspirin. You sould see a stroke specialist witin 24 ours of wen your symptoms started. If your specialist is unsure wic area of your brain was affected by te TIA, you sould also ave a brain scan witin 24 ours. (If you need a scan, you will usually be offered a type of scan called MRI (magnetic resonance imaging) unless tis is not suitable for you, in wic case you sould be offered a CT (computed tomograpy) scan. If you are at lower risk of stroke, you sould also be started on aspirin immediately. You sould be assessed by a specialist as soon as possible, and definitely witin one week. If you need a brain scan you sould also ave tis witin one week. 20 Copyrigt 2008 Royal College of Pysicians

21 Once it as been confirmed tat you ave ad a TIA, your ealtcare team sould talk to you about making canges to your lifestyle to reduce te risk of aving a stroke. Tese canges migt include stopping smoking, reducing te amounts of saturated fat, alcool and salt in your diet, losing weigt and taking more exercise. Furter tests after a TIA or minor stroke If you ave ad a TIA or minor stroke and your specialist tinks tat te cause migt be blockage of te main blood vessel in your neck (te carotid artery), you sould ave a scan of your neck witin one week of wen your symptoms started. If te scan sows significant narrowing of your carotid artery, you sould ave an operation called a carotid endarterectomy witin two weeks of your stroke or TIA to remove te blockage, if tis is appropriate for your overall ealt. Weter or not you need surgery, you sould be given drugs to reduce blood clotting if you ave any narrowing of te carotid artery. You sould also be offered advice and/or drugs for controlling your blood pressure and reducing your colesterol level. Prevention of furter stroke or TIA Once someone as ad a TIA or stroke tey are more likely to ave anoter one. Tere are a number of tings you can do, toug, to reduce your risk of aving anoter stroke. Tese may include: following advice on lifestyle (including advice on your diet, acieving a satisfactory weigt, regular exercise, stopping smoking, reducing alcool and salt intake) making sure your blood pressure is controlled witin safe limits Copyrigt 2008 Royal College of Pysicians 21

22 drug treatments to reduce te risk of blood clotting. Sometimes tis is as simple as taking an aspirin a day, but may include oter medication if you are allergic to aspirin, or prone to bleed easily, or your doctor tinks you would benefit from additional treatment, or if you ave an irregular eart rytm taking a statin to reduce your blood colesterol. To prevent anoter stroke occurring, it may be very important to continue wit any of tese measures for te rest of your life. If tere are complications associated wit any of tem you sould take professional advice, as tere may be oter ways of dealing wit te problem. End of life Unfortunately some individuals will not recover, eiter because te stroke is very severe or because it is combined wit oter ealt problems. If tis is te case and deat is inevitable, patients sould ave access to specialist palliative care. And all end-of-life decisions, including te witolding or witdrawal of life-prolonging treatments, sould be in te dying person s best interests. 22 Copyrigt 2008 Royal College of Pysicians

23 References and guideline coverage Te RCP guideline 1 covers: ow stroke services sould be organised some aspects of te immediate management of stroke tat are not covered by te NICE guideline below te immediate management of subaracnoid aemorrage (bleeding over te surface of te brain) reabilitation after stroke, bot immediately after it as appened and for te monts and years tat follow te advice and treatment tat are important to prevent furter strokes from appening. Te advice in te NICE guideline 2 covers: ow ealtcare professionals sould recognise te symptoms of a stroke or transient iscaemic attack (TIA) and make a diagnosis quickly in people over te age of 16 years wen to use brain imaging and oter types of scan specialist care for people in te first two weeks after a stroke drug treatments for people wo ave ad a stroke surgery for people wo ave ad a stroke. 1 Intercollegiate Stroke Working Party. National clinical guideline for stroke, 3rd edition. London: Royal College of Pysicians, National Collaborating Centre for Cronic Conditions. Stroke and transient iscaemic attack: national clinical guideline for diagnosis and initial management of acute stroke and transient iscaemic attack (TIA). London: National Institute for Healt and Clinical Excellence, Copyrigt 2008 Royal College of Pysicians 23

24 Glossary ABCD 2 score: a score tat predicts te risk of a person aving a stroke witin a few days of a TIA. anticoagulant: a type of drug tat reduces blood clotting; examples include warfarin and eparin. antiplatelet drug: a type of drug tat elps prevent te formation of blood clots by affecting te function of blood cells called platelets; examples include aspirin and clopidogrel. carotid artery: te main blood vessel in te neck tat carries blood to te brain. carotid endarterectomy: an operation to remove a blockage in te carotid artery. caval filter: a device tat is implanted in a blood vessel called te inferior vena cava in order to prevent te formation of a pulmonary embolism. CT (computed tomograpy) scan: a type of tree-dimensional scan tat uses X-rays to give images of body tissues. deep vein trombosis (DVT): a blood clot tat forms in a vein (usually in te leg). FAST (Face Arm Speec Test): a test involving tree simple cecks to indicate weter a person as ad a stroke or TIA. aemorragic stroke: a type of stroke caused wen a blood vessel bursts, causing bleeding into te brain. iscaemic stroke: a type of stroke tat appens wen a clot blocks an artery tat carries blood to te brain. MRI (magnetic resonance imaging) scan: a type of scan tat uses a strong magnetic field and radio waves to produce detailed pictures of te inside of your body. proton pump inibitor: a type of drug tat treats indigestion by reducing te amount of acid produced in te stomac. statin: a type of drug used to lower colesterol levels. ROSIER (Recognition of Stroke in te Emergency Room): a test used by ealtcare professionals in A&E to confirm tat someone as ad a stroke. trombolysis: treatment wit a drug tat breaks down blood clots. transient iscaemic attack (TIA): often called a mini-stroke, a TIA appens wen te brain s blood supply is interrupted for a very sort time. 24 Copyrigt 2008 Royal College of Pysicians

25 Useful organisations Local ealt services Information about local ealt services for stroke patients sould be available from your GP, local ospital, primary care trust, strategic ealt autority and local brances of te Stroke Association. You can get contact details for all tese agencies from NHS Direct (Freepone: ; website: Social services Social services offer various types of information, advice or services to elp people at ome, in residential omes or nursing omes. Details of local social services departments are listed in your local telepone directory or are available from local council offices. If you meet certain criteria you may be eligible for services (wic may carry a financial carge) suc as: elp wit personal care meals equipment and aids to use at ome, or adaptations to your ome. Some social workers are based in or attaced to ospitals. If you tink you will need elp at ome wen you leave ospital and a social worker as not been organised for you, ask te ospital staff to contact a social worker from te community/district team for you. Te social worker will ten assess your needs for elp and assistance. If you ave an assessment by social services to determine your needs, your carer will also be eligible for an assessment of any needs for support wit teir care giving. You may not be able to live in your own ome after your stroke. Social services can elp you coose te rigt residential or nursing ome. Depending on your income level and any savings you ave, tey may also be able to organise some financial elp wit tis. Copyrigt 2008 Royal College of Pysicians 25

26 Financial elp and advice Having a stroke can affect your income, particularly if you ave to give up work. Te Benefit Enquiry Line for People wit Disabilities (Freepone: ) provides general confidential advice about benefits and details of local brances of te Department of Work and Pensions wose staff can provide information and advice on benefits, grants and loans. In some areas, freepone language lines (advice in languages oter tan Englis) are listed in your local telepone directory. If you want elp filling in forms to claim Disability Living Allowance (DLA) or Attendance Allowance, te Benefit Enquiry Line can pass your details on to te regional disability centres wo will call you back to assist wit tis. Some regional disability centres may also organise ome visits to complete forms for people wit severe disabilities. Local brances of organisations suc as Age Concern and te Citizens Advice Bureau also offer advice on financial, legal and welfare matters. Your local Employment Services JobCentre provides advice to elp people wit disabilities return to work. Many areas also ave DIAL services (Disability Information and Advice Line) tat provide advice, information and guidance for disabled people, including tose wo are seeking employment. Te Stroke Association and Different Strokes (see below) also provide muc useful advice and guidance. Some assistance may be available from carities tat specialise in elping disabled people to return to work (eg te Saw Trust, Tel: ). Te government website Directgov provides information across government departments and elsewere for disabled people including employment support: 26 Copyrigt 2008 Royal College of Pysicians

27 Voluntary and support groups (For contact details see pages 30 31) Te Stroke Association Te Stroke Association provides practical support, including telepone elplines, publications and welfare grants, to people wo ave ad strokes, teir families and carers. In parts of te country, te Stroke Association provides a range of services including: family and carer support workers: people wo offer emotional support and advice to families of people wo ave ad strokes, and to people affected by stroke wo live alone a community service called Communication Disability Support, were staff and volunteers work to improve communication skills wit people wo ave lost te ability to speak, read or write. Local ealt services sould ave contact details for local Stroke Association services and copies of teir information leaflets. Helpline: Website: Different Strokes Different Strokes is run by and for younger people wo ave ad strokes. It produces information on a range of topics including general advice on disability aids and gadgets, benefits, social services, patients rigts, coping wit te psycological impact of stroke, and te effects of stroke on sex and relationsips. Teir elpline is staffed by stroke survivors and tey organise a nationwide counselling network. Local brances (were available) run regular exercise classes. Tel: Website: Copyrigt 2008 Royal College of Pysicians 27

28 Connect te communication disability network Connect works wit people living wit stroke and apasia (problems wit speec and language). Connect s vision is a world were apasia is no longer a barrier to opportunity and fulfilment. Connect s practical work wit people living wit apasia is backed by in-dept researc, and togeter tey form te basis for a compreensive programme of education and training courses for ealt and social care providers as well as for people wit apasia, teir families, friends and carers. Connect also produces books and resources to elp people living wit apasia get information in formats tat are easy to understand, suc as Te stroke and apasia andbook. Tel: Website: Speakability Speakability is a national carity tat supports people living wit apasia and teir carers. Tey run an information service and special events trougout te year. Teir main activity is a national network of support groups, run by people wit apasia for people wit apasia. Te groups meet regularly for mutual support and social activities. Tey are not terapy groups. Helpline: Website: 28 Copyrigt 2008 Royal College of Pysicians

29 Local stroke clubs Tere may be local stroke clubs in your area wic provide advice, support and meetings for stroke patients and teir carers. Tese may be organised by local GPs, district nurses or ealt visitors or by local brances of te Stroke Association or Different Strokes. Some local patients and carers set up teir own clubs or self-elp groups witout input from formal organisations. Contact your GP, or members of your specialist stroke team, for details of local clubs and groups. You can ten coose te one wic provides te kind of meetings and activities wic best suit your own personal needs. Carer groups Similarly, your local ealt and social services sould also ave details of any local carer groups wic cater specifically for relatives and friends caring for people wit disabling conditions. Useful advice and information is also available from national organisations suc as Carers UK (Tel: ). Te Relatives and Residents Association provides information, advice and support for residents of care omes and teir relatives via a telepone elpline: ; website: Copyrigt 2008 Royal College of Pysicians 29

30 Addresses, telepone numbers and websites Benefit Enquiry Line for People wit Disabilities Freepone: Carers UK 20 Great Dover Street London SE1 4LX Tel: CarersLine Website: Cest, Heart & Stroke, Scotland 65 Nort Castle Street Edinburg EH2 3LT Advice line: Website: Connect te communication disability network Marsalsea Road London SE1 1HL Tel: Website: Different Strokes Different Strokes Central Services 9 Canon Harnett Court Wolverton Mill Milton Keynes MK12 5NF Tel: Website: Directgov Website: DisabledPeople/index.tm Disabled Living Foundation Harrow Road London W9 2HU Helpline: Website: Incontact SATRA Innovation Park Rockingam Road Kettering Nortants NNI6 9JH Specialist elpline: Trained counsellor elpline: General information: Website: NHS Direct Freepone: Website: 30 Copyrigt 2008 Royal College of Pysicians

31 Nortern Ireland Cest, Heart & Stroke Association Belfast Office 21 Dublin Road Belfast BT2 7HB Advice elpline: Website: Te Stroke Association Stroke House 240 City Road London EC1V 2PR Helpline: Website: Relatives and Residents Association 24 Te Ivories 6 18 Nortampton Street London N1 2HY Advice Line: Website: Saw Trust Fox Talbot House Greenways Business Park Malmesbury Road Cippenam Wiltsire SN15 1BN Tel: Website: Speakability Helpline: Website: Copyrigt 2008 Royal College of Pysicians 31

32 Patients, carers or ealt professionals wo would like to purcase furter copies of tis booklet sould go to te Royal College of Pysicians website: Pysicians and oters wo would like to purcase copies of te full National clinical guideline for stroke, 3rd edition, sould go to te Royal College of Pysicians website: Tis booklet was prepared by te Intercollegiate Stroke Working Party. Tey would like to tank te Stroke Association for teir elp in preparing te content and for teir contribution towards te funding of te booklet, and te National Institute for Healt and Clinical Excellence for use of teir material. Copyrigt 2008 Royal College of Pysicians Copyrigt All rigts reserved. No part of tis publication may be reproduced in any form (including potocopying or storing it in any medium by electronic means and weter or not transiently or incidentally to some oter use of tis publication) witout te written permission of te copyrigt owner. Applications for te copyrigt owner s written permission to reproduce any part of tis publication sould be addressed to te publiser. ISBN Royal College of Pysicians 11 St Andrews Place London NW1 4LE Registered Carity No Design and layout by RCP Publications Unit Printed in Great Britain by Te Lavenam Press Ltd, Sudbury, Suffolk 32