Patient’s experiences after stroke.
Cardiovascular accident (CVA) or stroke is defined by the World Health Organization as a clinical syndrome consisting of ‘rapidly developing clinical signs of focal (at times global) disturbance of cerebral function, lasting more than 24 hours or leading to death with no apparent cause other than that of vascular origin’. The effects on the person who has sustained a stroke are life – changing in that their physical, emotional and cognitive ability can be impaired and can result in possible loss of function. With such a wide range of impact, it is a condition that is best managed by a multidisciplinary team.
Treatment of people with a stroke has changed considerably over the last 10 years in that the earlier thrombolysis is administered the lower the mortality rate. According to Prof Kelly (2016), for thrombolysis to be effective it should be given within 4 hours and 30 minutes of the event occurring. In 2010 a National Stroke Strategy for CVD was launched which has resulted in the doubling of specific stroke units from 9 in 2006 to 18 in 2010.
A Stroke Victim and his Carer’s story.
Pat and Kay give an open and honest description of the early and long term impact of a stroke. The onset of the condition was not really classical and it is easy to understand the difficulties and complexities in assessing what was happening to Pat and the anxieties of his golfing buddies in trying to do the right thing.
- The initial episode: Stroke in Evolution
Listen to Pat’s description and imagine how the initial contact with healthcare could have been improved; both the phone call to the out-of-hours medical service and the original assessment and monitoring of his condition:
How should we handle an anxious and difficult phone contact?
Listen to the caller’s concerns
Acknowledge those concerns and don’t follow a protocol of what information is needed until you have established a two way communication with the caller: ‘yes I understand why you are so worried; let’s work out the best way to help Pat etc and then offer to call an ambulance etc’
How has early assessment of a cerebrovascular event changed in the 10 or more years since Pat’s illness?
Prompt action can sometimes prevent further damage to the brain and so the FAST campaign was initiated to help speed up diagnosis: F for FACE; ask them to smile and look for facial asymmetry: A for ARMS; ask them to raise both arms and look to see if one arm drifts down: S is for SPEECH; does their speech sound strange-ask them to repeat a simple phrase: T is for TELEPHONE; call 999 at any of these signs because brain cells die every second.
Emergency brain scan will show whether damage is caused by a clot or a bleed and direct which intervention is necessary
How do you get consent for the investigations and treatments? Think about whether Pat has capacity to consent to these investigations. How do you assess this and if not, what do you do?
- The next morning: Completed Stroke
Pat shows the importance of communication and care and is complementary about his consultant whose role was simply to hand over care to the physiotherapist and rehab. Pat’s main concern was about what the future may hold.
If you are involved in the care of someone with a recent stroke, think of things you may say to give them an idea of possible outcomes
‘It’s difficult to be certain but if you can work hard at regaining some movement, then you can overcome some of the stiffness and disability’
‘We have done as much as we can to improve the brain’s circulation but it takes quite a long time for brain function to return so just keep going with the physical therapy’
- 6 weeks in hospital
This section highlights the various functional impairments that Pat may have suffered as a result of his stroke.
List the various functional loss that may happen with a stroke and the area of the brain involved
Hemiparesis motor cortex, one hemisphere with the anterior circulation affected
Dysphasia if speech and language centre are involved (L hemisphere for R handed people)
Disorientation can be due to generalised intra-cerebral damage
Visual fields posterior circulation
- Preparing for home
Despite all the hard work and expert physical therapy, Pat had to overcome some changes in his mobility before he could live at home. Once again, the preparations for home involve planning and assessment by a number of professionals and some adaptations to his house. There are some frustrations in getting these sorted out and advanced preparation cannot be underestimated.
The next time you talk to someone with a stroke, ask them about their transfer from hospital to home and the key personnel involved.
- On the road again
Initial assessment to test orientation and road knowledge (cognitive abilities) by an occupational therapist
Appointment with a specialised driving instructor to supervise first exposure to driving in traffic. There was some concern about special awareness but confidence returned with practice.
There are certain schemes available to give financial support to disabled drivers or passengers; please read the Revenue booklet VRT7 drivers-passengers-with-disabilities-tax-relief-scheme.pdf
April 2016 at http://www.revenue.ie/en/tax/vrt/leaflets/ to understand the tax relief scheme, aid for passengers with disabilities, how charitable organisations may claim for vehicle tax repayment, adaptations available for drivers or passengers and fuel grant.
- Parking problems
The use of disabled parking spots by able bodied drivers is selfish, thoughtless and is an offense that could attract a fine
The carer’s story
Kay talks about her memories of the 3 months of care that her husband received in hospitals after a stroke
• The evolving stroke and the unfortunate delays in assessment and treatment and how she worries that ‘clot busting’ drugs were not given because of a delay in getting to hospital and the wait in the emergency room. At the beginning of his illness she thought that the episode would simply pass and everything would be alright
• During the first few hours when Pat was lying on a trolley in the Emergency Department, Kay tells us about the importance of an explanation and physical contact with Pat. They both speak highly of the geriatrician, simply because of his kind words of explanation.
Pat and Kay were very grateful for the information provided about his condition. Open and individual communication with the patient is recommended by the Medical Council (Medical Council’s Guide to Professional Conduct and Ethics for Registered Medical Practitioners (2016) particularly if something goes wrong. Please read this guide and perhaps construct and role play a scenario involving open disclosure of a medical error.
• The dread of coming home and the huge change in family life
Kay describes how difficult it was for her to feel prepared for Pat coming home. It was all so new for her and she quite rightly knew that life was not going to be the same. Pat was still using a wheelchair at that stage yet the only adaptations that were needed was in the bathroom.
Kay describes the changes to their lives and how they worked through it.
Remember to ask about the carer as well as the patient as the carer can be forgotten. Support was needed for toileting and showering but in time things improved.
She describes the support she receives from health professionals including the GP, the public health nurse and the OT.
The Public Health Nurse in Ireland has a particularly important role in managing patients at home.
Try and find out the range of responsibilities of this role and talk to one of the PHN to ask them more about their job
While you can manage the major problems it is the little things that can matter and do get on your nerves!
We are both in it together so please don’t forget the carer and don’t park in a disabled spot
Irish Heart Foundation (2010) National Clinical Guidelines and Recommendations for the Care of People with Stroke and Transient Ischaemic Attack. Dublin.
Lutz, B.J., Young, M.E., Cox, K.J., Martz, C. & Creasy, K.R. (2015) The crisis of stroke: experiences of patients and their family caregivers. Topics in stroke rehabilitation.