Expectations of a stroke network

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Expectations of a stroke network

• Jon Barrick
• CEO
• The Stroke Association

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Patient Expectations ?

• Simply that
• care will be provided and organised
• in line with the evidence as to what is best
  practice and necessary
• to secure the best outcomes for the patient,
• with patients being given information
• and choices
• to enable their views to determine care options

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Expectations of stroke patients and their family

• 5 Demands for action
• March 2008

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Fed the 5 demands into the English Stroke Strategy
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The 5 demands

• 1. Stroke must be treated as a medical emergency
  at all times.
• 2. All stroke patients must be taken immediately
  to and spend the majority of their time in a
  stroke unit.
• 3. All stroke survivors must receive a smooth
  transition from hospital to home.
• 4. All stroke survivors must receive all the
  rehabilitation and long-term support that meets
  their specific needs.
• 5. All transient ischaemic attacks (TIAs/mini
  strokes) must be treated with the same
  seriousness as stroke.

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Rapid Progress being made
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The 10 Expectations of a stroke support network

• Patients first
• The health system is more than the NHS
• Have to have a plan for the whole stroke care
  pathway
• Involvement of all providers and stakeholders
• Build in feedback mechanisms from stroke
  survivors and their families
• Need to ensure stroke awareness and prevention as
  part of the networks planning.
• Build in Metrics
• Work to achieve the National stroke strategy
  Quality markers.
• Provision to be flexible enough to accommodate
  advances in care therapies medium and longer
  term.
• Involvement in the Stroke Research network

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Patients First

• Long terms conditions NSF and range of Govt
  policy positions talk of the Patient at the
  centre of the system.
• Whats necessary for best treatment
• Whats necessary for best support

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Supporting patients to make informed decisions
about care and treatment
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Supporting patients to make informed decisions
about their care and treatment

• Clinicians are not the only target for clinical
  guidelines, patients and carers have legitimate
  interests in learning about best practice,
  treatment options and likely outcomes.
• Failure to provide sufficient information about
  illness and treatment is the most frequent source
  of patient dissatisfaction.

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Enhancing Support for Patient Decision Making, 4
factors

• Library of decision aids i.e. Cochrane Inventory
  of Patient Decision Aids, or Ottawa Health
  Research Institute A-Z Inventory of Patient
  Decision Aids.
• Doctors willing to use the aids
• System support for delivery in the care pathway
• Support and training as appropriate

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Communication with patients and carers, from
sentinel audit of stroke June 2008
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Communication with patients and carers, from
sentinel audit of stroke August 2008

• On this issue of communication, on individual
  hospital performance
• 25 of hospitals scored a median of 6 to 52 on
  communication
• 50 scored 61 to 77
• 25 scored 78 to 95
• There remain some units where there appears to
  be resistance to making relatively easy changes
  that can have a major impact on the quality of
  care a patient receives.

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Systematic Review on Decision Aids BMJ 1999

• 17 studies
• Compared with controls, decision aids produced
  higher knowledge, lower decisional conflict and
  more active patient participation in decision
  making, but little immediate improvement effect
  on satisfaction, and uncertain effects on quality
  of life longer term.

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Example Decision Aid Summary Should I take
anticoagulants to prevent stroke?
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Decision Aid Summary
Decision Aid Summary
Should I take anticoagulants to prevent
stroke? Introduction This information will help
you understand your choices, whether you share in
the decision-making process or rely on your
doctor's recommendation. Key points in making
your decision Anticoagulant medication, such as
warfarin (Coumadin, for example), is highly
effective in preventing stroke and death due to
stroke in people with atrial fibrillation.
However, it may not be suitable for everyone.
Consider the following when making your
decision Anticoagulant medication, such as
warfarin, provides the best protection against
stroke, if you can take it. Almost everyone who
has atrial fibrillation should take warfarin. The
only people with atrial fibrillation who may not
benefit from taking warfarin are people with lone
atrial fibrillation who are younger than 65 and
have no other risk factors for stroke, or people
with chronic kidney disease, recent surgery or
head trauma, a history of gastrointestinal
bleeding, or alcoholism. If you are going to
have cardioversion, your doctor will recommend
that you take anticoagulant medication for 3
weeks before and for at least 4 weeks after
cardioversion, to reduce the risk of stroke.1 If
you have lone atrial fibrillation and are younger
than 60, you can take 325 mg of aspirin daily
instead of warfarin. If you are at risk for a
stroke, aspirin can help prevent a stroke. But
aspirin does not work as well as warfarin. When
taking anticoagulants, you are required to have
regular blood tests to assess your risk for
problem bleeding.
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Medical Information What is an anticoagulant
medication? Anticoagulants are medications that
help prevent blood clots. They are often called
blood thinners, but they do not actually thin the
blood. Instead, anticoagulants work by increasing
the time it takes a blood clot to form. Why is it
important to take anticoagulant
medications? Atrial fibrillation increases your
risk of stroke. People with atrial fibrillation
and an otherwise normal heart are 5 to 6 times
more likely to have a stroke than people who do
not have atrial fibrillation.2 People who have
heart valve damage along with atrial fibrillation
have an even higher risk. Taking anticoagulant
medications significantly reduces your risk. The
most commonly used anticoagulants are warfarin
and heparin. What are the risks of taking
anticoagulant medications? Anticoagulants slow
the amount of time it takes for your blood to
clot. This increases your risk of developing
problems with bleeding within and around the
brain, bleeding in the stomach and intestines,
bruising and bleeding if injured, and serious
skin rash. You should not take anticoagulants if
you Have unexplained blood in the stool. Have
uncontrolled high blood pressure. Are at high
risk for falling. Are unable to take the
medication as directed. Drink large amounts of
alcohol. Are unable or unwilling to have regular
blood tests. Women with atrial fibrillation who
are pregnant or plan to become pregnant should
talk with their doctor about the potential
benefits and risks of taking anticoagulants. In
particular, these women should not take warfarin
(such as Coumadin) because it can cause birth
defects. Use of some anticoagulants, such as
heparin, may complicate pregnancy and childbirth
and can increase the risk of developing
osteoporosis or thrombocytopenia if taken over
the long term.
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How effective are anticoagulants in reducing
stroke? Anticoagulants have been shown to reduce
the risk of stroke in people who have atrial
fibrillation.3 Risks Aspirin versus warfarin
Aspirin
Warfarin You have an 8
risk of stroke. You have a
4 risk of stroke. You have a 1 risk of severe
bleeding. You have a 3 risk of severe
bleeding. These percentages represent risk over
a 2-year period. While the percentages in the
above table may seem small, try thinking about
the risk in this way If you take aspirin instead
of warfarin, you are 2 times more likely to have
a stroke. So, your risk of stroke is lower with
warfarin. But, if you take warfarin instead of
aspirin, you are 3 times more likely to have
severe bleeding. So, your risk of severe bleeding
is higher with warfarin. Talk to your doctor
about which medication is right for you. For more
information, see the topic Atrial Fibrillation.
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Your Information Your choices are Take
anticoagulants to reduce the risk of stroke. Do
not take anticoagulantstake aspirin instead. The
decision about whether to take anticoagulants
takes into account your personal feelings and the
medical facts. Deciding about taking
anticoagulants Reasons to take anticoagulants
Anticoagulants significantly
reduce the risk of stroke and death from
stroke. Are there other reasons that you might
want to take anticoagulants? Reasons not to take
anticoagulants Anticoagulants have side effects,
including problem bleeding, bruising, and skin
rash. You will need to have frequent blood tests
to check the level of the anticoagulant in your
blood. Are there other reasons that you might not
want to take anticoagulants? These personal
stories may help you make your decision.
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Use this worksheet to help you make your
decision. After completing it, you should have
a better idea of how you feel about taking
anticoagulants. Discuss the worksheet with your
doctor. Circle the answer that best applies to
you. I am at high risk for stroke.
Yes No Unsure I am not an alcoholic.
Yes No Unsure I am not comfortable having
frequent blood tests. Yes No Unsure I am older
than 60, and I don't have lone atrial
fibrillation. Yes No Unsure I am going to have
cardioversion for atrial fibrillation.
Yes No Unsure I am pregnant or plan to become
pregnant. Yes No Unsure Use the following
space to list any other important concerns you
have about this decision.
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What is your overall impression? Your answers in
the above worksheet are meant to give you a
general idea of where you stand on this decision.
You may have one overriding reason to take or not
to take anticoagulants. Check the box below
that represents your overall impression about
your decision.      
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References

• Citations
• Fuster V, et al. (2006). ACC/AHA/ESC 2006
  guidelines for the management of patients with
  atrial fibrillationExecutive Summary. A report
  of the American College of Cardiology/American
  Heart Association Task Force on Practice
  Guidelines and the European Society of Cardiology
  Committee for Practice Guidelines (Writing
  committee to revise the 2001 guidelines for the
  management of patients with atrial fibrillation).
  Circulation, 114(7) 700752.
• Wang TJ, et al. (2003). A risk score for
  predicting stroke or death in individuals with
  new-onset atrial fibrillation in the community
  The Framingham heart study. JAMA, 290(8)
  10491056.
• Albers GW, et al. (2001). Antithrombotic therapy
  in atrial fibrillation. Chest, 119(Suppl 1)
  194S206S.

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The Health system is more than the NHS

• Mustnt allow organisational pride and culture to
  get in way of doing what is best for the patient
• Organisations in monopoly positions need to
  understand need for advocacy and support for
  users
• All need to subordinate organisational self
  interests to needs of patient for bringing
  diverse resources to bear.

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Leicester Stroke Clubs networking day, activity
from the tip of a huge iceberg of nearly 450
stroke clubs in the UK
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Charter Mark accredited Information services,
community services, Research activity and website
Pursue excellence from all Providers
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Have to have a plan for the whole stroke care
pathway

• Care and treatment must not be constrained by
  limitations and conflicting priorities of
  different parts of the pathway.
• Journey should appear seamless

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Commissioners play a key role
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Involvement of all providers and stakeholders

• Disempowerment leads to loss of knowledge,
  expertise and resources, leading to inferior
  performance and planning

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Build in feedback mechanisms from stroke
survivors and their families

• Why guess or rely on assumptions that may be
  wrong ?
• Why not enable the good things to be expressed to
  accentuate the positive?

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Need to ensure stroke awareness and prevention as
part of the networks planning.

• Key barriers to public action on stroke
• Dont know the symptoms
• Dont know what to do when symptoms show
• Myths it only affects older people
• Myths theres no treatment
• Myths cant prevent it

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Govt awareness campaign on Fast starts 9 February

• 12 million to be spent
• TV
• Newspaper ads
• Over next two years

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(No Transcript)
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Public awareness of stroke
We have been successful in raising awareness
through PR and advertising activity, but
sustained advertising campaigns over several
years are needed to significantly raise and
maintain awareness levels.

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Build in Metrics

• What gets measured gets done
• Inputs, outputs and outcomes when recorded
  provide enormous potential for
• Positive improvement.

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Work to achieve the National stroke strategy
Quality markers.
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Provision to be flexible enough to accommodate
advances in care therapies medium and longer
term.
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And policy shifts, Such as

• Personal health budgets
• New IT based approaches and therapies
• European wide access to healthcare issues
• More sophisticated disability and anti ageism
  legislation

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And what about children ?

• About 400 to 500 strokes per annum
• Research beginning to indicate it is one of the
  major killers and cause of serious disability
  amongst kids
• Making our strategy 2010 to 2015 and we will have
  more to say on this in the future

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Involvement in Stroke Research

• Involvement in Research creates a baseline of
  excellence, which is a positive platform for
  better patient care
• Support UK Stroke Research Network
• Attendance at events like the UK stroke Forum
  ensures good practice is shared and research
  translated into positive practice

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Stroke Association Research funding set to reach
2.5 million per annum and rising (hopefully)
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Expectations of stroke patients and their family

• 5 Demands for action
• March 2008

42
The 5 demands

• 1. Stroke must be treated as a medical emergency
  at all times.
• 2. All stroke patients must be taken immediately
  to and spend the majority of their time in a
  stroke unit.
• 3. All stroke survivors must receive a smooth
  transition from hospital to home.
• 4. All stroke survivors must receive all the
  rehabilitation and long-term support that meets
  their specific needs.
• 5. All transient ischaemic attacks (TIAs/mini
  strokes) must be treated with the same
  seriousness as stroke.

43
The worry is not that we aim too high and fall
short, but rather that we set our sights too low
and achieve too little progressMichaelangelo