CONTENTS:
2.0 Personal Details / 4
3.0 My Contacts / 5
4.0 Stroke Medical Information / 6
5.0 Lifestyle Risk Factors / 8
6.0 Looking Forward / 9
7.0 Goals for the future / 10
8.0 My Prescription Details / 12
9.0 Appointment Details / 13
10.0 Next Review Discussion Notes / 14
11.0 My Progress / 15
12.0 My Reviews / 16
13.0 Useful information / 17
13.1 Information for Family Carer / 17
13.2 Driving / 18
13.3 Work / 19
13.4 Holidays and Travel / 20
14.0 Glossary of Terms / 21
15.0 Useful Organisation Contact Details / 23
16.0 Stroke Association Leaflets / 27
INTRODUCTION
This passport is for keeping clear and up-to-date records of treatment and support available throughout your rehabilitation. It encourages the use of goal setting targets which can be referred to by those professionals helping in “getting your life back”.
Yourself management plan is about those things you want to achieve over time that will reduce your risk factors for having another stroke and to continue to improve your functional abilities. This will help you to live as actively, healthily and independently as you are able in your local community.
The health and medical professionals who have been caring for you will complete pages 4 - 8 with you before go home. We recommend that you keep updating it as you continue to make progress in your recovery by setting yourself new goals to work towards. People can continue to improve in their abilities for a couple of years after their stroke and they achieve this through self motivation, having something to work towards, and the support they receive from their family and carers. The professionals will also support you achieving your goals with advice, information and where appropriate, further treatment. You might also want to consider attending the Expert Patient Programme delivered by the Local Health Board.
Some sections of the passport contain information about your contacts, condition medication etc. This makes the passport a useful document for you to take to clinic appointments with you, when new professionals come into contact with you, or if you are going away. If it is to be helpful to them, particularly in an emergency, it is important that you keep it up to date.
PERSONAL DETAILS
Name
Address
Postcode
Tel No.
NHS No.
Hospital No.
MY CONTACTS
MY NEXT OF KIN
Name
Address
Tel No.
SECOND CONTACT IN CASE OF EMERGENCY
Name / Relationship
Address
Tel No.
MY GP
Name
Surgery Address
Tel No.
MY STROKE CONSULTANT
Name
Hospital
Tel No.
MY HOSPITAL CONTACTS:
Name
Hospital
Tel No.
Name
Hospital
Tel No.
Name
Hospital
Tel No.
Name
Hospital
Tel No.
Name
Hospital
Tel No.
MY COMMUNITY CONTACTS:
Name
Address
Tel No.
Name
Address
Tel No.
Name
Address
Tel No.
Name
Address
Tel No.
STROKE MEDICAL INFORMATION
I was first admitted to (Hospital Name):
On (date):
Under the care of:
I have been diagnosed as having had a: / Please tick below / Date
1. Transient Ischaemic Attack (TIA)
2. Ischaemic Stroke
I received thrombolysis / Yes/No
3. Haemorrhagic Stroke
Date of Discharge
My risk factors for Stroke and how they are being treated
Yes / No / How they are being treated
Within our Control
Blood Pressure
Smoking
Atrial Fibrillation
Cholesterol
Diabetes
Obesity
Alcohol
Exercise
Stress
Outside my Control
Family History
Gender
Age
Ethnicity
What matters to me:
For example things that are important to me, this could be being independent....
Things I want to achieve (my goals)
For example, being able to wash and dress myself independently, to be able to drive, to be able to return to work....
Date Goal Set
Things I have achieved:
Date Achieved
Things I need to remember and record
My prescriptions
Morning
Lunch
Teatime
Bedtime
Notes on my medication:
Appointments and visits to remember
Date & Time / Who With / Where / Why
Things I need to discuss in my next review
Please tick if this is discussed
You may wish to consider these before you attend your review
My Progress
This section is for me to record what has helped or hindered me working towards my goals
Date / What helped me work towards my goals? / What hindered me work towards my goals?
Discharge
6 weeks after
6 months after
One year
Two years later
My Reviews
My reviews will take place:
Review / Date & Time / With / Venue / Goals Discussed
6 weeks after
6 months after discharge
One year
Two years later
USEFUL INFORMATION
INFORMATION FOR MY FAMILY/CARER
Carers Assessment:
By law you are entitled to an assessment even if the person you care for doesn’t want or need services themselves. If you give substantial and regular support to someone in their own home, your own needs can be assessed so that you can get help to provide the support you give.
Local: 01656 642279
National: 0800 882 200
DRIVING
If you are the holder of a car, moped or motorcycle driving licence, you should refrain from driving for a minimum of 1 month after your TIA/stroke. You should discuss with your Stroke Consultant/GP when it is safe for you to drive again. If your symptoms from the effect of stroke have not lasted longer than 1 month you do not need to inform DVLA. However, medical enquiries will be undertaken by DVLA if any of the following circumstances apply:
1. One month after the stroke there are residual symptoms causing limb weakness, or visual disturbance, or problems with co-ordination, memory or understanding.
2. Epileptic attacks of any kind have occurred, other than those within 24 hours following the stroke event.
3. Brain surgery was required as part of the treatment for the stroke event.
4. There has been more than one stroke event within the past three months.
5. Your doctors have expressed concern about your fitness to drive.
6. You hold either a current LGV or PCV licences.
Persistent limb disability following a stroke event may not prevent you holding a driving licence. Adaptations to a vehicle and or restriction to automatic types of vehicle may enable you to overcome driving difficulties.
The law requires adaptations or restriction to certain types of vehicles be noted on the licence. Therefore you will need to inform DVLA of those adaptations. In the interest of road safety you must be sure at all times that you can safely control a motor vehicle. If you have any doubts, or if any of the above six points applies to you, you should discuss the matter with your doctors. If any of the six points are relevant to you, you must contact DVLA.
In all events you must inform your vehicle insurance company of your TIA/stroke. Otherwise you may find that your insurance is void.
WORK
Returning to work can seem to be quite a daunting task to undertake after a TIA/stroke, and this will depend on the type of work that you do, how you have been affected by the event, and how you feel in yourself. Try not to compare what you can do now to you used to do. Tiredness and cognitive problems like memory loss and poor concentration can cause as many hurdles in the workplace as physical disability. Many people find it an opportunity to try something else, refrain, work from home, work flexibly or take up new challenges and opportunities.
Doing voluntary work within the voluntary sector can be fulfilling and important, and can be a great way of building up confidence, helping you to get back into a work mode, being with other people and keep you occupied until you can see where your future lies.
If you do return to your previous employment, it is very important that you have a frank discussion with your employer and close colleagues. So that you do not put pressure on yourself to work to the same level as you were before your stroke. Some people can be unrealistic about returning to work and take on too much too soon. Give yourself a chance and don’t be too hard on yourself if things don’t work out the way you want them to.
Remember to take travel arrangements and travel times into consideration when thinking about going back to work; sometimes this in itself can be a strain for you. Reducing your working hours and work load or being able to have flexible working patterns, especially if you have good and bad days, will all help ease you back into work.
Some employers have access to an Occupational Health Service, who will be able to assess your work capability. In all events you should discuss returning to work with your Stroke Consultant/GP.
Remember that many people do successfully return to work, and those who have a less severe stroke return within three months of having their stroke. Obviously if you are not earning, the bills still have to be paid and this can be of great stress on you and your family. What benefits you are entitled to will depend on your circumstances, further information can be gained from the Citizens Advice Bureau or Government agency/websites, for example
HOLIDAYS AND TRAVEL
We all need a holiday for a rest, relaxation, to see new places or to visit family. Because of your long term health condition/s, additional travel arrangements and considerations may need to be thought about.
This is generalized information and as an individual you will need to consult with your GP before travelling, flying and especially going on a long haul flight. If you have special needs/requirements it is best to check with the airline/tour operator before booking.
When can I fly?
It is advisable not to fly for 2-3 months after your stroke. If you have had a TIA and you made a complete recovery, you may fly after 10 days. This is the minimal time limit. In each case you must seek the permission from your GP/Stroke Consultant/airline you are travelling with.
Planning ahead
Before booking your holiday have a medical check up with your GP/Consultant, especially if flying.
- Ensure that the accommodation is suitable for your needs. Steps into the shower, stairs/steps and hilly terrain could present problems.
- Take a doctors letter with your stroke passport with you outlining your existing medical conditions and medication.
- Ensure that you have adequate holiday/ medical insurance in place before you travel; including the cost of flying you home in an emergency.
- Make sure that you have enough supplies of you medication for the whole of you holiday, plus extra in case of delays. Keep your medication in your hand luggage, your main luggage may get misplaced. If you are taking opiate type drugs for pain, make sure this is explained in your doctor’s letter, and notify the airline. This may prevent delays going through Customs.
- If travelling by coach see if you have a seat with good leg room and if by car take stops to “stretch” your legs. If flying arrive early at the airport to allow plenty of time for booking in and to obtain seats with plenty of leg room, unless previously arranged with the airline. This is to give you room to move/exercise your legs to improve your circulation whilst travelling.
- Transport within the airport and to the airplane can be arranged, if booked in advance.
- Avoid handling heavy luggage
GLOSSARY OF TERMS
ANTICOAGULANT:
A type of drug that reduces blood clotting
ANTIPLATELET DRUG:
A type that helps prevent the formation of blood clots by affecting the function of blood cells called platelets
ATRIAL FIBRILLATION:
A condition that affects the heart, causing irregular and often fast heartbeat
BMI (BODY MASS INDEX):
The relationship between a person’s height and weight
BP (BLOOD PRESSURE):
The pressure against the walls of the blood vessels
CARTOID ARTERY:
The main blood vessel in the neck that carries blood to the brain
CARTOID ENDARTERECTOMY:
An operation to remove a blockage in the carotid artery
CT (COMPUTED TOMOGRAPHY) SCAN:
A type of three-dimensional scan that uses x-rays to give images of body tissues
DEEP VEIN THROMBOSIS (DVT):
A blood clot that forms in a vein (usually in the leg)
HAEMORRHAGIC STROKE:
A type of stroke caused when a blood vessel burst, causing bleeding into the brain
INR (INTERNAL NORMALISED RATIO):
The time it takes blood to coagulate/clot
ISCHAEMIC STROKE:
A type of stroke that happens when a clot blocks an artery that carries blood to the brain
MALNOURISHED:
A person can become malnourished if their diet doesn’t provide enough nutrients, such as calories, protein, vitamins, to keep them healthy
MRI (MAGNETIC RESONANCE IMAGING) SCAN:
A type of scan that uses a strong magnetic field and radio waves to produce detailed pictures of the inside of the body
STATIN:
A type of drug used to lower cholesterol levels
THROMBOLYSIS:
Treatment with a drug that breaks down the blood clot blocking the artery in your brain
TRANSIENT ISCHAEMIC ATTACK (TIA):
Sometimes called a “mini-stroke”, a TIA happens when the brain’s blood supply is interrupted for a short time. Symptoms disappear within 24 hours.
Useful Organisations / Contact Details / May be of use
ALAC Wheelchair Service / 02920 313905
Artificial limb and appliance service provides the following services: Artificial Limb Service, Artificial Eye Service, Environmental Controls, Communication Aids, Orthotics, Wheelchair Service.
Free service with a referral needed by Doctor, Nurse or Physiotherapy.
Benefits
Enquiry Line / See also Welfare Rights
0800 882 3654
Care Line / 0808 808 7777
Free service offering advice, benefits assessments and Community Care Issues
Carers
Allowance Disability and Carers Service / 0800 882 200
Carers Assessments / 01656 642279
By law you are entitled to a free assessment even if the person you care for doesn’t want or need services themselves. If you give substantial and regular support to someone in their own home, your own needs can be assessed so you can get help to provide the support you give.
Care Line Advice / 0808 808 7777
Benefits, assessments and community care issues
Citizens Advice Bureau
(CAB) / 0844 772020
The Citizens Advice service helps people resolve their legal, money and other problems by providing free, independent and confidential advice.
Crisis Loans / Emergency interest free loans
0800 032 7950
DVLA Driver Loans / 0870 240 009
There may be a cost involved in this service.
Disabled Drivers Association / 0870 770 3333
Disabled Motoring UK is a campaigning charity for disabled drivers, passengers and Blue Badge holders.They can provide information about accessible parking, vehicle adaptations, congestion charging and other issues that affect disabled drivers.
Employment
Access to Work / 0845 602 1358 or ask your local Job Centre
Information service for aphasia / 080 8808 9572
NHS Direct / 0845 4647
National Debt line / Free advice on financial problems
0808 808 4000
Pension Credits / 0800 991 234
This is a means tested service
Pension Service / 0845 606 0265
Stroke Association / 0845 30 33 100
The stroke association provide high quality, up-to-date stroke information for stroke patients, their families and carers
Tax CreditsThis is a means tested service / 0845 300 3900
Age Cymru
Bridgend
Age Cymru offers free advice but there may be a charge for some services / 01656 669288
Age Cymru is the leading charity for older people in Wales. They provide information and advice for the
elderly about benefits, care, age discrimination, health and wellbeing.
CIIS Team
Bridgend
Free assessments / 01656 754301
The Bridgend Community Integrated Intermediate Care Service (CIIS) aims to keep local people in need of care where they want to be – out of hospitals and care homes and in their own home.
The CIIS team will provide early assessments and interventions to detect and prevent any deterioration in a person’s condition and will provide community support ranging from just a couple of days to up to six weeks.
Social ServicesBridgend / 01656 642279
Wheelchair HireBridgend / 01656 661579
There may be a charge for this service
Care & Repair
Bridgend
Free advice, however there may be a charge for services / 01656 646680
Care & Repair Cymru are the “Older People’s Housing Champion”. They are a national charitable body who actively work to ensure that all older people have homes that are safe, secure and appropriate to their needs.
Crossroads
Bridgend
Free advice, however there may be a charge for services / 01656 784100
Crossroads Care is a national organisation, with schemes all over Wales and England. They provide short respite care breaks for young and adult carers, who care for members of their family or friends who are over the age of 18.
Samaritans
Bridgend
Free Advice / 01656 662 333
Samaritans offers a 24/7 helpline service which gives you a safe space where you can talk about what is happening, how you are feeling, and how to find your own way forward.
08457 909090
Stroke Association Information and Support / 01656 752754
Free advice
Care and Repair
Neath Port Talbot / 01792 325400
See above for details
CIIS Team
Neath Port Talbot / 01639 862806
See above for details
Red Cross Home from Hospital Scheme
Neath Port Talbot
Free service / 01639 639894
The home from hospital dischargescheme helps patients leave hospital when their medical and nursing needs have been met. We provide them with emotional and practical support for a period of up to six weeks – immediately after discharge – to ease the transition from hospital to home.
Red Cross
Neath Port Talbot / 01639 643818
The British Red Cross provides a wide range of services throughout Wales.
Age Cymru
Cardiff and the Vale / 02920 521052
See above for details
Care and Repair
Cardiff and the Vale / 01446 704308
See above for details
Red Cross
Cowbridge / 01446 773987
See above for details
Red Cross
Treforest / 01443 844129
See above for details
I have received the following leaflets for additional information:
STROKE ASSOCIATION LEAFLETS / DATE