Stroke Guide For patients, carers and relatives
Contents BACKGROUND Introduction
4
Effects Of A Stroke
8
Medical Tests And Investigations
9
What To Expect
13
Care Pathway
15
HOSPITAL INFORMATION Hyper Acute Stroke Unit
18
Acute Stroke Unit
19
Frequently Asked Questions
26
Diary Of Progress
30
Car Parking
30
Making A Complaint
31
Before Returning Home
33
WHEN YOU RETURN HOME What Will It Be Like?
36
Coping
38
Relationships And Family
39
Social Life And Hobbies
40
Getting Back To Your Daily Routine
41
Intimacy Following A Stroke
42
1
STROKE GUIDE CONTENTS
MAKING CHANGES TO YOUR LIFESTYLE Lifestyle Service Listings LEAFLETS
44
The Eatwell Plate Guide To Food Labelling Smart Swaps - Taster Recipes Get Active, Stay Active Don’t Let Drink Sneak Up On You Smokefree - Guide to Finding The Right Support
COMMUNITY INFORMATION Health Services In The Community
48
Specialist Services
50
Outpatient Services
51
Other Services
52
Social Care Sevices
55
Social Support
57
Financial Support
61
Travelling
63
Useful Contacts
66
Useful Websites & Links
72
MY DIARY My Information
74
My Diary Notes
75
Questions To Ask
80
Medications
81
Names To Remember
84
Letters To Keep Safe
85
STROKE GUIDE CONTENTS
2
3
STROKE GUIDE BACKGROUND
Introduction WHAT IS A STROKE? A stroke often happens suddenly, without warning and can affect people of any age. It can happen when the blood supply to part of the brain is disrupted.The symptoms depend on the part of the brain affected and the extent of the damage incurred.This is why no two strokes are the same and why recovery is so variable. A TIA (Transient Ischaemic Attack) Also known as a ‘mini-stroke’, this is where the supply of blood to the brain is temporarily interrupted.The symptoms are very similar to those of a stroke, but the difference is that they resolve.This can mean an episode can last as short as a few minutes to hours, but no longer than 24 hours.TIAs should be treated very seriously as they are often a warning sign that a full stroke is coming.
TYPES OF STROKE There are two main causes of a stroke, which require different types of treatment.These are explained on the following pages.
STROKE GUIDE BACKGROUND
4
Ischaemic stroke (infarction)
Diagram 1 Ischemic stroke
Most strokes (accounting for over 80% of all cases) occur when the blood supply to the brain is stopped due to a blood clot.This blood clot restricts the flow of blood to the brain.
5
STROKE GUIDE BACKGROUND
Haemorrhagic stroke (haemorrhage)
Diagram 2 Hemorrhagic stroke
This type of stroke (up to 20% of all cases) is caused by bleeding in or around the brain from a burst blood vessel.
STROKE GUIDE BACKGROUND
6
THE BRAIN The brain is divided into two halves – the right and the left. The location of the stroke is especially important in understanding which parts of the body will be most affected. The left side of the brain controls the right side of the body‌ and vice versa. Each side of the brain has different functions and this will dictate what affect the stroke has, or what symptoms the person experiences. In the majority of people, the left side of the brain is responsible for language (reading, writing, speaking and understanding), and the right side of the brain controls our ability to make sense of what we see, hear and touch; our ability to judge size, speed, distance and position in space. Memory, vision, movement, sensation, and hearing are controlled by both sides of the brain. Therefore these functions can be affected whichever side of the brain is damaged.
7
STROKE GUIDE BACKGROUND
Effects Of A Stroke It is important to remember that no two strokes are the same. How your stroke affects you depends on: 1. The area of the brain damaged 2. The severity of the stroke 3. Your age and general health THE MOST COMMON STROKE EFFECTS • Weakness, clumsiness, heaviness or paralysis down one side • Swallowing difficulties • Disturbed vision • Loss of bladder/ bowel control • Tiredness and difficulty sleeping • Numbness/altered sensation • Pain • Loss of balance STROKE GUIDE BACKGROUND
• Communication difficulties: writing, speaking, reading, calculating • Psychological effects: mood swings, anxiety, depression • Reduced concentration, memory, ability to process information • Difficulty recognising and knowing how to use familiar objects 8
Medical Tests and Investigations Below are some of the tests which may be offered to you. It is unlikely for someone to need all these tests – your doctor will decide which ones are appropriate for you. Blood tests: These can be used to check for certain conditions that may have contributed to your stroke, such as blood sugar level and cholesterol level. High levels can increase the risk for further stroke. Echocardiogram (or cardiac ultrasound scan): This may be used to look for any heart problems that may have contributed to your stroke. 9
Electrocardiogram (ECG): This heart tracing test measures the rhythm and activity of your heart. Irregular heart rhythms can cause strokes and need to be treated. Chest X-ray: This looks for underlying conditions such as heart or lung complaints that may have contributed to the stroke.
STROKE GUIDE BACKGROUND
CT (Computed Tomography) scan: This is the type of brain scan which identifies what kind of stroke you have had and the extent of the damage the stroke has caused. It is also used to exclude other types of illness that have similar symptoms to a stroke. A scan should be done within 24 hours of having a stroke.
STROKE GUIDE BACKGROUND
MRI (Magnetic Resonance Imaging) scan: This is another type of brain scan which gives a more detailed picture than a CT scan. Carotid Doppler or Duplex ultrasound scan: This is used to find out if there has been a narrowing of the blood vessels in the neck (the carotid arteries), which supply blood to the brain.This narrowing can cause a stroke. 10
Thrombolysis: When you were admitted to hospital you may have been offered Thrombolysis a ‘clot dissolving’ treatment. This treatment is only suitable 11
for a small proportion of stroke patients. Having this treatment can help restore blood flow to the affected areas of the brain, so reducing the amount of STROKE GUIDE BACKGROUND
brain damage that occurs. However, the treatment may not cause the blood clot to completely dissolve as they can vary in size and make-up. Overall though, most patients improve quicker following Thrombolysis treatment. Locally this treatment is only available at Luton and Dunstable Hyper Acute Stroke Unit. Thrombolysis is offered to patients who arrive within 4.5 hours of stroke symptom onset. The treatment is not given after this time, as to date, it is not shown to reduce the damage already caused to the brain tissue.
STROKE GUIDE BACKGROUND
Thrombolysis not only helps to dissolve the clot, but will also thin the blood and therefore there is a 5 – 8% risk of haemorrhage following treatment. For this reason you may not be eligible for Thrombolysis if: • You have recently had surgery • You fell prior to / as a result of your stroke and sustained a bone fracture • You are already on anticoagulants and your International Normalised Ratio (INR) is not within the normal range. Any of the above reasons puts you at an even greater risk of haemorrhage following Thrombolysis.
12
What To Expect There is no way of predicting how a person will be affected long term. You have to wait for time to pass and allow the initial healing process to take place. Sometimes this feels like no-one is telling you what is going on, but this is not the case – it is just too early to know what the outcome will be. This can take several weeks to months, but during this time you may notice improvement in some of your symptoms or the effects of the stroke. When this improvement slows down it may be clearer what the long term effects of the stroke are going to be. Most useful recovery happens in the first few months, but people can continue to recover for several years after the stroke.
WILL I HAVE ANOTHER STROKE? Having a stroke increases your risk of having another. However there is a lot that can be done to help such as 13
STROKE GUIDE BACKGROUND
taking medication to thin your blood, controlling high blood pressure, cholesterol and diabetes, and altering your lifestyle to reduce known risk factors (secondary prevention). You will need the help of doctors and nurses to identify individual problems and make sure they are well controlled. More complex situations may need access to specialist services such as preventative surgery. STROKE GUIDE BACKGROUND
14
Stroke Care Pathway Individual Getting Better
6 5 4 3 2 1
Diagram 3 Health Service Facilities
15
STROKE GUIDE BACKGROUND
1. In-Patient Services: • Hyper Acute Stroke Unit (Luton and Dunstable Hospital) • Acute Stroke Unit (Milton Keynes General Hospital) • Hospital Social Service Team 2. Early Supported Stroke Discharge: • Early Stroke Rehabilitation Team 3. Specialist Services: • Stroke Clinical Specialist • Stroke Social Worker and Social Work Assistant 4. Community Services: • General Practitioner • Intermediate Care Services • Reablement At Home Team 5. Out-Patient Services: • Milton Keynes Neuro-Rehabilitation Services • Speech and Language Therapy Team 6. Milton Keynes Social Services: • Adult Social Care Access Team (ASCAT) • Community Occupational Therapy • Milton Keynes Centre for Integrated Living (MK CIL) • Continence Service • Podiatry STROKE GUIDE BACKGROUND
16
17
STROKE GUIDE HOSPITAL
Hyper Acute Stroke Unit Some patients who have had a stroke may initially be taken to Luton and Dunstable Hospital, to the Hyper Acute Stroke Unit. There are certain criteria which will need to be met before you are taken there, the main one of which is knowing the time when your stroke first started. Luton and Dunstable Hospital have access to a stroke consultant 24 hours a day. Following scans and blood tests, they can confirm your diagnosis and offer you the correct treatment.
STROKE GUIDE HOSPITAL
You may be discharged back to Milton Keynes Hospital or directly to your home as soon as possible. If you are discharged home, you need to ensure that your GP refers you for an out patient consultant appointment at Milton Keynes Hospital. You may also be referred to the Early Stroke Rehabilitation Team for further therapy at home.
18
The Acute Stroke Unit The Acute Stroke Unit in Milton Keynes has been established to provide a co-ordinated team with specialist expertise in stroke rehabilitation as part of the in-patient service. At this hospital, the Department of Medicine aims to provide as many stroke patients as possible prompt access to the Acute Stroke Unit.
It is the aim of the Unit to: • Provide educational programmes for staff, patients and carers • Provide specific interventions from involved professionals • Develop an individual rehabilitation programme for each individual • Facilitate discharge to an appropriate destination 19
STROKE GUIDE HOSPITAL
THE TEAM Doctors Whilst on the Acute Stroke Unit, your medical care will be managed by consultants. They are supported by a team consisting of professionals with specialist knowledge in strokes. The doctors will ensure that you are medically stable and, where possible, will aim to minimise the amount of damage to your brain and make sure you get appropriate secondary prevention medication. At their earliest opportunity, they will discuss (with you, the patient, and your family) the nature and severity of your stroke as well as your potential prospect of recovery. This gives you and your family STROKE GUIDE HOSPITAL
the opportunity to find out as much as you can about your condition. It is important to be aware that the doctors will be asking you and your family to consider long-term discharge plans. Discussions will occur on a regular basis at different stages of your rehabilitation. Meeting with the doctors is by appointment only – please speak to the ward clerk or a member of staff. Nurses The Ward Sister leads a team of nurses experienced in caring for people who have had a stroke. The nurses are divided into two teams: Red and Blue. On arrival to the ward, you will be allocated to one of the teams. 20
In the absence of your named nurse, the nurse in charge of the ward should be able to help you with any particular questions or concerns, but if not, appropriate help will be sought.
“ You will also meet your
‘named nurse’ who will be responsible for assessing your individual needs and planning your nursing care. ”
If you would like to comment on any aspect of the service the ward provides, please ask to speak to a member of staff. Alternatively, you may wish to make an appointment to see the Ward Manager or telephone the ward on 01908 243202. 21
The Ward Manager typically meets with family members on Tuesday afternoons. Occupational Therapists Having had a stroke you may experience difficulty in carrying out everyday tasks. You may also experience changes in the way you think and react. The OT will help you identify areas of difficulty and work alongside you to develop ways to undertake these tasks. Assessments and treatment will usually take place in the hospital setting, but with your permission an ‘access’ visit or ‘home’ visit may be necessary to see if any changes would be helpful to increase safety and independence in the home. STROKE GUIDE HOSPITAL
Physiotherapists (Physios) A stroke can often limit movement on one side of the body, thus the other side tries to compensate for this. We aim to help you regain movement, balance and stamina, as well as manage weakness or loss of feeling of the limb. STROKE GUIDE HOSPITAL
The physiotherapist will help prevent muscles from becoming too loose or tight, which will in turn minimise future complications. Your physiotherapist will advise on correct positioning and ways of moving on the ward to enhance 22
recovery and prevent secondary complications such as muscle/joint stiffness and pain. Dieticians Weight loss and malnutrition often occur in stroke patients with eating and swallowing difficulties. Good nutrition is essential in your recovery and rehabilitation, and our aim is to ensure the diet you are having is adequate for your needs. Any patient experiencing nutritional problems will be referred to the Dietician for support and advice. Speech and Language Therapists Your speech and language therapist will support you and your family/carers
23
when swallowing and /or communication difficulties occur. SWALLOWING: A stroke may affect the nerves and muscles involved in swallowing. We will assess your swallowing and advise you on how to best manage this. Sometimes a person may need to be ‘Nil By Mouth’ for a period of time and alternative ways of feeding may be needed. There will be regular reviews of your swallowing during this time. COMMUNICATION: Difficulties with talking, understanding speech, reading or writing. We work closely with you, your family and carers to ensure that you are able to communicate as effectively as possible. STROKE GUIDE HOSPITAL
Social Workers We aim to help you return home and stay there safely so that you can live your life as independently as possible following your stroke. We can do this by arranging a social care assessment. If it is not possible for you to carry on living in your own home, we will look at alternatives, such as sheltered housing or a residential/nursing care home. An assessment is STROKE GUIDE HOSPITAL
made on an individual basis and referrals will be made by The Team as appropriate. Stroke Clinical Specialist Having had a stroke, you may benefit from consistent support in accessing information, and knowing how to access a full range of services. The Stroke Clinical Specialist provides advice, information, support and referral on to appropriate services for all those with a GP in Milton Keynes. 24
WARD INFORMATION Meals and Drinks The Hospital Trust operates a ‘Protected Mealtime’ policy. This allows you (the patient) to eat your meals at your own pace to improve your nutritional intake. If you require support to eat your meals, they will be placed on to a red tray to alert members of staff of your needs. Visitors are discouraged from visiting at meal times 25
unless they are assisting you (the patient) to eat and drink. Due to health and safety regulations, we regret that it is not possible to reheat food items brought in by family/friends. Visitors For safety reasons and the comfort of all patients, there is a limit of two visitors at the bedside. Ask the ward staff about visiting times. STROKE GUIDE HOSPITAL
Frequently Asked Questions What items will I need in hospital? A selection of day clothes such as tracksuits or loose fitting clothing and a pair of shoes/trainers. You will be encouraged to dress in normal day clothes, this will enable you to feel more comfortable during rehabilitation and will help maintain your dignity. You will need to have a selection of toiletries to use. The hospital provides towels and disposable wipes (flannels) to help with infection control. Pyjamas and nightdresses are available, however, you may prefer to wear your own. STROKE GUIDE HOSPITAL
Please mark all your possessions with your name. We regret that the Trust cannot take responsibility for any personal items unless they are handed to the staff to be placed in the hospital safe. How will I know who carries out what role? The nursing staff and some therapy staff wear uniforms for work, others wear their own clothes. Every member of staff should be wearing an identification badge and this will have their job title written on it.
26
How long will I be in the Acute Stroke Unit? The average stay for stroke patients is varied. As strokes affect everyone differently, you may be in for one week, or sometimes much longer than four weeks. Once you have been on the ward for about a week, the team should have a good idea of how long you will need to remain here. Please be aware that following a Team decision, you may be moved off the unit if you have reached your full potential and are either ready to go home or waiting an alternative package of care. How will I know how I am doing? When admitted to the Acute Stroke Unit, you are assigned a Specialist 27
Consultant and a Named Nurse who will provide your care whilst you are on the Acute Stroke Unit. In addition, if you require therapy you will have access to Occupational Therapy, Physiotherapy, Speech & Language Therapy, a Dietician and a Social Worker, if appropriate. The staff across these disciplines involved in your care are known as your multidisciplinary team (MDT). Your multidisciplinary team will meet twice a week on the Acute Stroke Unit to ensure your healthcare needs are met to enable your safe discharge. You and or your next of kin will be provided regular updates from your multidisciplinary team. If you do not feel STROKE GUIDE HOSPITAL
“ Everyone has an
important part to play in your rehabilitation. ”
STROKE GUIDE HOSPITAL
28
informed or have questions or concerns during your stay in hospital, do not hesitate to speak to your named nurse or a member of your multidisciplinary team who will endeavour to help in any way they can. How can family/friends get involved in my rehabilitation? Family and friends often ask what they can do to help the recovery process. Everyone has an important part to play in your rehabilitation and this includes not only the physical aspects, but also social, emotional and psychological elements too. Family and friends are encouraged to attend rehabilitation sessions such as Physiotherapy and Occupational Therapy, as long as you are in agreement.
29
Once your condition allows, you may wish to leave the ward (with family/friends) for short periods. Initially, this may be around the hospital grounds or to the restaurant. Later on this may be further afield, perhaps to the city centre for lunch. After discussions with the Team, home leave may be granted. In this instance, advice on travel arrangements will be discussed with you. Will I have rehabilitation after discharge? Your rehabilitation needs will be specific to you. There are several different kinds of rehabilitation once you are discharged and this will be discussed with you prior to leaving the hospital. If you are unsure about things, do not hesitate to ask a staff member for clarification. STROKE GUIDE HOSPITAL
Diary of Progress You may not remember your time in hospital clearly, and this can be confusing and frightening. It may help to talk to your family about what they remember about your stay in hospital, how they felt when you were ill and the things that happened while you were there. There is a diary section in the back of this guide for you to record your progress and thoughts. It can be helpful to look at this with them and carry it on into your recovery.
Car Parking Your visitors can apply for a temporary parking permit, if they plan to visit the site on a regular basis. For an application form, ask a member of staff.
STROKE GUIDE HOSPITAL
30
Making a Complaint The Complaints and PALS (Patient Advice and Liason Service) Team provides confidential advice and support to patients, families and their carers.The service can also help with any issues or concerns about standards of care patients and their carers wish to raise. PALS can help by: • Advising and supporting patients, their families and carers • Providing information on NHS services • Listening to concerns, suggestions or queries • Helping to sort out problems quickly.
31
When is the PALS team available? Opening hours: 9am-5pm, Mondays to Fridays, not including public holidays. An out-of-hours answerphone service is available. Messages will normally be returned within 24 hours.
STROKE GUIDE HOSPITAL
How do I contact the PALS team? ! TELEPHONE 01908 243633 or 01908 243181 " E-MAIL complaints@mkhospital.nhs.uk or pals@mkhospital.nhs.uk # POST Milton Keynes PCT HQ Hospital Campus Standing Way Milton Keynes MK6 5NG
STROKE GUIDE HOSPITAL
32
Before Returning Home Don’t be afraid to ask your doctor or named nurse anything you are unsure about. Remember all the staff are there to help. Upon leaving the hospital you should: • Ask for a copy of your discharge letter • Check your medication • Have you got what you need? • Do you know what it is for? • Do you know when and how to take it? • Know what support you will have when you leave the hospital • Make an appointment with your GP within two weeks to discuss ongoing treatment
33
STROKE GUIDE HOSPITAL
STROKE GUIDE HOSPITAL
34
35
STROKE GUIDE HOME
What Will It Be Like? Leaving hospital and returning home is a major step in your recovery and is likely to have been a goal you’ve been working towards for some time. It is a very positive step, but it will take time and effort to get back to a normal life. You won’t have the same support you had in hospital and it can be a difficult time for you and for your relatives. After your stroke, your body will need time to heal and get back any abilities you have lost. This takes time, practice, determination and patience. In many ways your recovery is a journey that is very
STROKE GUIDE HOME
personal to you. Even if your stroke symptoms are similar to someone else’s, your ability to recover or your motivation to recover may be very different.
“ It will take time and effort to get back to a normal life.” It’s normal to go through times where you feel depressed or frustrated because you don’t seem to be getting better.
36
Setting small goals in your daily routine can help you recover and show you that you are improving. A small goal could be something as simple as making a drink for yourself, or walking a few steps further without needing a rest. After you have had a stroke, you’ll probably feel very tired and won’t have much energy. It will take time before you feel well enough to cope with everyday life and many more months to get back to full strength. Don’t push 37
yourself too hard as this can end up making your recovery take longer. Keep doing the exercises you have been shown, but don’t overdo it as this can set your recovery back. You will need to slowly increase your activity to build up your strength, but make sure that you rest when you need to. You will need to take things very slowly. Make sure you incorporate regular rest in your daily routine and don’t feel guilty about it. STROKE GUIDE HOME
Coping When you’ve had a stroke, you may feel differently about things and may not want to do things you used to enjoy. You may not feel like seeing a lot of people at once, so start by seeing one or two friends at a time for short periods. Your recovery may take a long time and as you get better and begin to do more, you may find that
STROKE GUIDE HOME
things get on top of you. During this time you may lack confidence, worry about your recovery, or even feel depressed. Talking about this to your family or a close friend can help.
38
Relationships and Family After you’ve had a stroke, you and the people around you may seem to change. Your family may make a fuss and might not understand why you’re not keen on the hobbies and interests you used to enjoy. Your family and friends were afraid you might die, so they may want to do everything for you when you get home. If this annoys you, talk to them calmly about how you feel. Don’t bottle things up and get angry.
39
If you have young children you may feel under even greater pressure to get back to normal, do the important things first – other jobs can wait. Take a nap at the same time as the children and don’t be afraid to ask your friends and family for help.
STROKE GUIDE HOME
Social Life and Hobbies There are many things you can do yourself to improve your psychological well-being. Meeting people regularly, every day if possible, is an important source of well-being. Talking to others can be a big help. Many people find support groups, such as stroke support groups and clubs helpful, as they provide a chance to meet people who have been through a similar experience. STROKE GUIDE HOME
Returning to hobbies and interests is also an important part of the recovery process. You could even look at trying new things. Try not to be put off by thoughts that you are unable to do things as well as you could before. Many activities can be adapted to enable you to carry on enjoying them. 40
Getting Back To Your Daily Routine Lots of people worry about coming home from hospital or returning to work after a critical illness, it is normal to wonder whether you’ll be able to cope. Talk about it with your family and think about how you can adapt things at home to help. If you used to work, you may not be well enough to return full time straight away. When you’re feeling better, it’s a good idea to arrange to go back and see your colleagues and talk to your line manager. Depending on your job, you may be able to do a few hours a day at first. 41
If you don’t depend on paid employment you could always do some voluntary work. Many people find it worthwhile and can mean you have a reason to get up in the morning, and you are not then tied to the necessity to get to work when you really don’t feel well enough.
STROKE GUIDE HOME
Intimacy Following A Stroke Depending on the area of the brain affected, a stroke can cause physical and emotional changes that affect a person’s sex life. These issues can be short-term and relatively easy to overcome, but for others, they are more serious and long lasting. It’s normal to be worried about when it’s safe to start having sex again. Your partner is likely to be worried about this too. Most people find it difficult to talk about sex, but try to relax and keep a sense of humour. Cuddles are really STROKE GUIDE HOME
important. Take things slowly and see what happens.
“ Most people find it
difficult to talk about sex, but try to relax and keep a sense of humour.” Sometimes, medical problems such as impotence (being unable to get and keep an erection) can affect sex. If you’re worried, talk to your GP. 42
43
STROKE GUIDE LIFESTYLE
Lifestyle Service Listings There are a number of changes you can make which will improve your health and reduce your risk of stroke. The following section includes the relevant information to support on the following: • Stop smoking • Eat a healthy varied diet • Moderate your alcohol intake • Achieve and maintain a healthy weight • Keep physically active
STROKE GUIDE LIFESTYLE
44
Change4life Tips, information, and advice for a healthy lifestyle. ! www.nhs.uk/change4life Active Milton Keynes Exercise Referral Scheme Exercise programme for adults in Milton Keynes " TELEPHONE 01908 254 241 # exercise.referral@milton-keynes.gov.uk Health and Lifestlye Opportunities (HALO) Weight management group for adults in Milton Keynes " TELEPHONE 01908 243 126
45
STROKE GUIDE LIFESTYLE
Smokefree Milton Keynes Stop Smoking Service for residents of Milton Keynes ! TELEPHONE 0845 200 23 23 " www.smokefreemk.org CRi: Milton Keynes Alcohol Support Service Drug and alcohol recovery service in Milton Keynes ! TELEPHONE 01908 250 730 Reactivate Milton Keynes A variety of local physical activity opportunities for adults in Milton Keynes " www.milton-keynes.gov.uk/sportsdevelopment
STROKE GUIDE LIFESTYLE
46
47
STROKE GUIDE INFORMATION
Health Services In The Community Not all community services are appropriate for everyone.Your needs will be assessed in hospital by the members of the team and referrals will be made by each member as appropriate. If a community service is required, speak to a health or social care professional with whom you have most contact, for example your GP. General Practitioners On discharge from hospital you will receive a copy of your discharge summary. Contact your GP in the first week after you have left the hospital to arrange an appointment.
STROKE GUIDE INFORMATION
Reablement at Home Team The Reablement at Home Team provides a short-term service for clients who require help washing and dressing, this can be for as little as one day up to a maximum of six weeks. The service aims to support clients to become as independent as possible. Care focuses on encouraging clients to do as much for themselves as possible,
48
working at all times towards your jointly agreed rehabilitation goals and objectives. Reablement at Home is only accessible by health or social care professionals. All referrals are made through the Single Point of Access. A trained operator will take the referral.
49
Early Stroke Rehabilitation Team (ESRT) The Milton Keynes Early Stroke Rehabilitation Team (ESRT) provides up to six weeks therapy and rehabilitation to stroke patients in their homes, or as close to home as possible, by coordinating an early and safe discharge from the Hyper Acute or Acute Stroke Unit.
STROKE GUIDE INFORMATION
Specialist Services The impact of a stroke can be quite significant, not only on the person, but also on family, friends and carers. It can often feel like a time of abandonment, when it is hard to access help, advice and support. Stroke Clinical Specialist Aims to provide in-depth knowledge and expertise; consistent education, support and advice in accessing information and a full range of services from the NHS, social care and others. This service is available to people who have had a stroke or TIA, their relatives and carers, members of the general public, professionals and voluntary organisations.
STROKE GUIDE INFORMATION
Social Worker and Social Work Assistant These members of the team work in partnership with family members and health, social and local community organisations. Their aim is to improve services for people who have had a stroke, by encouraging them to participate in community life and return to work, where appropriate.
50
Outpatient Services Neuro-Rehabilitation Services Neuro-Rehabilitation Unit is a multi-disciplinary team which aims to support people to achieve their goals in their home, social, work and community lives. It helps to assist people and families to understand, adjust to and manage their disability. Outpatient Physiotherapy Held at Milton Keynes Hospital, your GP will be 51
required to refer you on to this service. Speech And Language Therapy Team You may require continued support for your communication and/or swallowing when you leave hospital. The Speech and Language Therapist (SLT) will liaise with your ward staff and Community SLT services to arrange appropriate follow-up. STROKE GUIDE INFORMATION
Other Services District Nursing Service If you are housebound and have a nursing need, then a district nurse will visit you at home to carry out wound care, medication management and continence issues. This will be discussed with you and arranged as necessary, otherwise speak to your GP. Continence Service Problems with bladder and/or bowel control are very common after a stroke. Though this can be extremely distressing, many of these problems will resolve over time. Bladder/bowel control can often be regained, but if not, the problems associated with this can be managed effectively.This will initially be STROKE GUIDE INFORMATION
addressed by nursing staff or your rehabilitation team. Depending on the outcome, a referral may be made to a local continence advisor or specialist, such as a urologist, gastroenterologist, gynaecologist or geriatrician. Podiatry/Chiropody Service Podiatrists specialise in the assessment, diagnosis, treatment and management of a broad range of foot problems and pathologies. If you have a medical need for chiropody/podiatry you will probably be referred to an NHS chiropodist by a health professional. Alternatively, you can refer yourself to this service. 52
However, if your chiropody needs are mainly cosmetic you might not be accepted by the service, and it would be quicker perhaps to contact a private chiropodist from the Yellow Pages or contact Age UK. If doing so it is advisable to make sure that the chiropodist you engage is state registered. Community Occupational Therapy This unit provides an assessment of service users in their own homes, supplying equipment and adaptations as appropriate, to enable more independent living (and/or assisting of carers).
may be able to assess your needs and give advice or suggest appropriate adaptations and equipment. Have Your Say If you would like to raise a complaint, compliment, comment or concern about health services provided by Milton Keynes Community Health Services (MKCHS), we would like to hear from you. What do you think about our services? Have members of staff been helpful or have things not gone well? Your experiences help us to continue to make improvements to our services.
If you are having difficulties with day to day activities for example dressing, moving around your home or cooking, then a Community Occupational Therapist 53
STROKE GUIDE INFORMATION
How do I give feedback to MKCHS? ! TELEPHONE 01908 243 568 " E-MAIL complaints@mkchs.nhs.uk # POST MKCHS Standing Way Eaglestone Milton Keynes MK6 5NG
STROKE GUIDE INFORMATION
54
Social Care Services Adult Social Care Access Team (ASCAT) This Milton Keynes Council service assesses need, and can organise a wide range of social care services for people aged 18 and over who are disabled, frail, have a sensory impairment or mental illness, to enable them to live as independently as possible.
“ Receiving a personal
budget is the council’s preferred option of providing care.” Support can also be provided for those who care for others. 55
They provide help in many different ways, which includes: • Personal Budget to purchase care/services • Care at home • Day care • Extra Care Support • Respite care • Residential care • Meal delivery services • Equipment and adaptations When contacting ASCAT a Customer Liaison Officer (CLO) will gather information and, if appropriate, arrangements will be made for a social worker to meet with an individual to complete an assessment of their needs. This also involves STROKE GUIDE INFORMATION
establishing whether their needs meet MK Council’s eligibility criteria, formalising a care plan (if eligibility criteria is met) and discussing finances to assess whether an individual will be required to pay towards the cost of the services. Receiving a STROKE GUIDE INFORMATION
personal budget is the council’s preferred option of providing care. What this means can be discussed with the Customer Liaison Officer, or at the social worker’s visit.
56
Social Support Milton Keynes Centre for Integrated Living (MK CIL) The Milton Keynes Centre for Integrated Living MK CIL) can provide the following services: • A wide range of information on local and national support groups, benefits, equipment, transport and mobility, statutory and voluntary organisations, leisure, holidays and care.
57
• Equipment display areas • Help with first time applications for disabilityrelated benefits (e.g. Disability Living Allowance {DLA} and Attendance Allowance {AA}) • RADAR keys for accessible public toilets • Application forms for Disabled Parking Badges (Blue Badges)
STROKE GUIDE INFORMATION
Age UK Milton Keynes Works with and for local older people to make a real and positive difference to their well-being and quality of life. In particular, they run a home sitting service for carers and provide home visiting and befriending, shopping and light housework, advice and information. Carer Support Carers MK staff can assist by providing information, advice, and help to secure the services you may need. They will also provide emotional support and a listening ear, give advice on how to protect health, offer training to help carers in their role, provide access to therapy sessions and links to other family carers and support groups. STROKE GUIDE INFORMATION
Carers should be living in, or caring for someone living in, the Borough of Milton Keynes. Different Strokes Milton Keynes A national charity who offers support and advice for stroke survivors of working age to optimise their recovery, taking control of their own lives and to regain as much independence as possible. The group meet every Tuesday for most of the year 2pm – 4pm at Shenley Leisure Centre. The exercise and support class is designed to encourage mobility, confidence, fitness and self-esteem and also to meet other young survivors in similar situations. Partners and families, who have also had to survive 58
the stroke trauma are welcome to obtain help, advice and mutual support and join in the exercise class.Volunteers are also welcome. Stroke Activity Programme Providing stroke specific support in the community for patients after their rehabilitation. Runs on a Tuesday afternoon at Blackberry gym with qualified ARNI instructors (Action for Rehabilitation for Neurological Injury). The programme encompasses: • Task-related functional movement training • Physical coping strategies • Stroke-specific resistance training • Increasing flexibility and stamina • Increasing self-esteem
59
Please talk to your health care professional to be referred to the programme. Monday Club For anyone who has recently had a stroke, their partner or family member. It is the chance to meet with people in a similar position and have a chat. Time: The group usually meets on the second Monday in the month, 2pm – 4pm at the Peartree Centre. There is no need to book, just turn up for a friendly welcome. Talkback Club Welcomes people who have aphasia due to stroke. The aim is to help members to increase their confidence and communication skills in a relaxed atmosphere. STROKE GUIDE INFORMATION
Activities for all abilities are organised as well asoccasional wheelchair friendly outings and lunches. Meeting: Friday 9.30am to 12 noon at the Peartree Centre. Milton Keynes Council – Passport to Leisure The Passport to Leisure Scheme provides discounted access for residents of STROKE GUIDE INFORMATION
Milton Keynes to a variety of leisure facilities in the area. You will qualify for this scheme if you are a resident of Milton Keynes and are in receipt of the appropriate criteria and relevant benefits. For a full list of the eligible criteria and for an application form visit your local council office, local library or housing office, alternatively you can access this electronically via the MK council web-site. 60
Financial Support Citizen Advice Bureau (CAB) Offers free, independent and confidential advice on any subject including welfare benefits, face-to-face, by letter, fax, email and phone. They also offer a benefit check to clients in order to maximize income.
“ The Citizen Advice
Bureau offers a benefit check to clients in order to maximize income.” They prepare appeal cases, represent at tribunal level and have their own specialists in welfare benefits and tax credits. 61
You can get free and independent advice on all state benefits from Welfare Rights. You can get advice on what you can claim, how to claim, writing letters and completing forms. A Welfare Rights Adviser can even represent you at an Appeals Tribunal if you need it. Help with NHS costs A booklet called “Are you entitled to help with NHS costs?” is available from the MK Centre of integrated Living (CIL), any Job Centre Plus office, pharmacy, doctor’s surgery or the Post Office. Ask for booklet HC11 to see if you are eligible for any help with health costs. STROKE GUIDE INFORMATION
STROKE GUIDE INFORMATION
62
Travelling DRIVING AND TRANSPORT You must not drive after a stroke until you have had confirmation/advice from your consultant and informed the DVLA at Swansea and your insurance company. The Driver and Vehicle Licensing Agency (DVLA) will often contact your consultant before they determine whether or not you are fit to drive. The DVLA alone have the right to grant or revoke licences. It is the patient or their representative’s responsibility to notify the DVLA and the insurance company about the stroke. Failure to do so 63
is an offence and the consequence of inaction may be that the insurance is invalidated. The Blue Badge is administered by Milton Keynes Council. For further information and/or an application form contact Milton Keynes Council or the Milton Keynes Centre for Integrated Living (MK CIL). Concessionary bus fares are available for disabled residents living in the Milton Keynes area. In order to qualify, disabled people need to get their application forms signed by their GP. These STROKE GUIDE INFORMATION
forms are available from the Civic Offices in Central Milton Keynes. The Royal Association for Disability and Rehabilitation (RADAR) is a national organisation of and for disabled people. The National Key Scheme offers independent access for STROKE GUIDE INFORMATION
disabled people to locked public toilets around the country. A RADAR key can be purchased from MK CIL (Centre for Integrated Living). You will have to provide some proof that you are a Blue Badge holder or paperwork to show that you have a disability. 64
HOLIDAYS & TRAVEL INSURANCE Holidays are an important part of life, but after a stroke it can be more difficult to find somewhere suitable. There are a variety of useful organisations that can help people with disabilities to arrange a holiday, including breaks in the UK and abroad, holidays with assistance, and respite breaks. People often ask whether it is safe to fly after a stroke or whether there are any special precautions they should take. There don’t seem to be any reasons why people who have had a stroke shouldn’t fly, but it is always advisable to speak to your own doctor about this, as strokes can happen for different reasons. The Stroke Association Insurance Services, run by 65
Heath Lambert, has created travel insurance that caters for stroke survivors and for their families and friends travelling with them.Some of the benefits include: • All pre-existing medical conditions are covered • No upper age limits on our single trip policies • Annual multi-trip policies within the EU are available up to age 69 (worldwide policies up to age 64) • Purchasing your cover is quick and easy and no separate calls to medical screening companies are required • Cover is available within the UK, Europe and worldwide. STROKE GUIDE INFORMATION
Useful Contacts Acute Stoke Unit Milton Keynes Hospital, Standing Way, Eaglestone, Milton Keynes MK6 5LD ! TELEPHONE 01908 243 202 Early Stroke Rehabilitation Team (ESRT) Bletchley Community Hospital, Whalley Drive, Bletchley, Milton Keynes MK3 6EN ! TELEPHONE 01908 363 074 Stroke Clinical Specialist Team Bletchley Community Hospital, Whalley Drive, Bletchley, Milton Keynes MK3 6EN ! TELEPHONE 01908 650 424 " EMAIL ruth.joy@mkchs.nhs.uk Outpatient Physiotherapy Milton Keynes Hospital, Standing Way, Eaglestone, Milton Keynes MK6 5LD ! TELEPHONE 01908 243 031 STROKE GUIDE INFORMATION
66
Milton Keynes Neuro-Rehabilitation Services Bletchley Community Hospital, Whalley Drive, Bletchley, Milton Keynes MK3 6EN ! TELEPHONE 01908 379 440 Speech and Language Therapy Team Milton Keynes Hospital, Standing Way, Eaglestone, Milton Keynes MK6 5LD ! TELEPHONE 01908 243 095 Continence Service Bletchley Community Hospital, Whalley Drive, Bletchley, Milton Keynes MK3 6EN ! TELEPHONE 01908 650 401 The Complaints and Patient Advice and Liason Service Team (PALS) Milton Keynes PCT HQ, Hospital Campus, Standing Way Milton Keynes MK6 5NG ! TELEPHONE 01908 243 633 or 01908 243 181 " EMAIL complaints@mkhospital.nhs.uk or pals@mkhospital.nhs.uk
67
STROKE GUIDE INFORMATION
The Complaints Manager MKCHS, Standing Way, Eaglestone, Milton Keynes MK6 5NG ! TELEPHONE 01908 243 568 " EMAIL complaints@mkchs.nhs.uk Podiatry & Chiropody Service Bletchley Community Hospital,Whalley Drive, Bletchley Milton Keynes MK3 6EN ! TELEPHONE 01908 363 066 Community Occupational Therapy Bletchley Community Hospital,Whalley Drive, Bletchley, Milton Keynes MK3 6EN ! TELEPHONE 01908 253 772 Adult Social Care Access Team (ASCAT) Civic Offices, 1 Saxon Gate East, Milton Keynes MK9 3EJ ! TELEPHONE 01908 253 772 " EMAIL ascat@milton-keynes.gov.uk
STROKE GUIDE INFORMATION
68
Milton Keynes Centre for Integrated Living (MK CIL) 330 Saxon Gate West, Milton Keynes MK9 2ES ! TELEPHONE 01908 231 344 " EMAIL info@mkcil.org.uk Age UK Milton Keynes The Peartree Centre, 1 Chadds Lane, Peartree Bridge, Milton Keynes MK6 3EB ! TELEPHONE 01908 550 700 " EMAIL www.ageconcernmk.org.uk Carer Support Acorn House, 375 Midsummer Boulevard, Milton Keynes MK9 3HP ! TELEPHONE 01908 231 703 " EMAIL mail@carersmiltonkeynes.org Stroke Association 240 City Road, London EC1V 2PR ! TELEPHONE 0303 3033 100 " EMAIL info@stroke.org.uk
69
STROKE GUIDE INFORMATION
Different Strokes 9 Canon Harnett Court, Wolverton Mill, Milton Keynes, MK12 5NF ! TELEPHONE 0845 130 71 72 " EMAIL info@differentstrokes.co.uk # WEB www.differentstrokes.co.uk Different Strokes Milton Keynes 9 Rossini Place, Old Farm Park, Milton Keynes MK7 8EZ ! TELEPHONE 01908 969 877 " EMAIL alan.parsons@tiscali.co.uk # WEB www.differentstrokes.co.uk Citizen Advice Bureau (CAB) Acorn House, 375 Midsummer Boulevard, Milton Keynes MK9 3HP ! TELEPHONE 01908 604 475 # WEB www.mkweb.co.uk/citizens_advice
STROKE GUIDE INFORMATION
70
Independent Benefits Advice Welfare Rights Group Acorn House, 373 Midsummer Boulevard, Milton Keynes MK9 3HP ! TELEPHONE 01908 200 900 " WEB www.mkwr@gotadsl.co.uk DVLA Drivers Medical Group, Swansea SA99 1TU ! TELEPHONE 0300 790 68 06 " WEB www.dft.gov.uk/dvla Blue Badge & Disable Parking Scheme Milton Keynes Council, Civic Offices, 1 Saxon Gate East, Milton Keynes MK9 3EJ ! TELEPHONE 01908 253449 Stroke Association Insurance Service (Heath Lambert) ! TELEPHONE 01603 828 396 # EMAIL stroke@heathlambert.com " WEB www.stroke.org.uk/shop/insurance_and _ finance/ insurance_services/travel_ insurance.html
71
STROKE GUIDE INFORMATION
Useful Websites & Links NHS Choices www.nhs.uk/conditions/stroke Stroke Association www.stroke.org.uk Different Strokes www.differentstrokes.co.uk Headway www.headway.org.uk/stroke Age UK www.ageuk.org.uk Crossroads Care www.crossroads.org.uk Connect www.ukconnect.org
STROKE GUIDE INFORMATION
72
73
STROKE GUIDE DIARY
My Information Date of my stroke
Date I was admitted into hospital
Name of my consultant
Name of Acute Stroke Unit Nurse
Date I was discharged from hospital
STROKE GUIDE DIARY
74
My Diary Notes
75
STROKE GUIDE DIARY
STROKE GUIDE DIARY
76
77
STROKE GUIDE DIARY
STROKE GUIDE DIARY
78
79
STROKE GUIDE DIARY
Questions To Ask
STROKE GUIDE DIARY
80
Medications The following medicines are commonly given to stroke patients: THROMBOLYSIS Alteplase You may also hear the term, thrombolysis or clot buster. Alteplase is a medicine routinely used after heart attacks. It has also been proven effective in acute stroke if treatment is started within four and half hours of the onset of symptoms. Only a small number of patients will be suitable to receive alteplase and locally it is given in the Hyper Acute Stroke Unit at Luton and Dunstable Hospital.
ANTI PLATELETES/ BLOOD THINNERS These reduce the stickiness of blood. Asprin This may be given following a stroke if there is no bleed. 81
“ If you have problems
with your medication don’t just stop taking them, talk to your GP or pharmacist first.”
STROKE GUIDE DIARY
Dipyridamole Or Clopidogrel This is sometimes given with aspirin to make blood less sticky.
ANTI COAGULANTS These prevent harmful blood clots from forming and are used when someone has atrial fibrillation (an irregular heart beat). Warfarin Or Alternative Anticoagulant This may be given to people who have an irregular heartbeat (atrial fibrillation), mitral valve replacements and other cardiac conditions. Your blood (INR) will need to be checked regularly if on Warfarin but not if you are taking any other anticoagulants.
STATINS Cholesterol Lowering Drugs Statins are commonly used to lower cholesterol. Most patients are given a statin to lower their cholesterol to 3.5 or less and used for secondary prevention. Blood Pressure Treatments Various drugs are used to treat blood pressure, for example Diuretics (water tablets), Beta-blockers, Calcium Channel Blockers, ACE inhibitors, Angiotensin II Receptor Antagonists and Alpha Blockers. They all work in different ways. You may be prescribed more than one type and you should only stop them under medical advice. STROKE GUIDE DIARY
82
MY MEDICATIONS LIST AND DOSAGE
83
STROKE GUIDE DIARY
Names To Remember
STROKE GUIDE DIARY
84
Letters To Keep Safe You can hole punch any letters or documents you receive including information from the hospital, appointments and reminders.
85
STROKE GUIDE DIARY
STROKE GUIDE DIARY
86
M14210
This guide was produced in collaboration with: • Milton Keynes Council • Milton Keynes Clinical Commissioning Group • Milton Keynes Hospital NHS Foundation Trust • Central and North West London NHS Foundation Trust - Milton Keynes Community Health Services
Available in audio, large print, braille and other languages
01908 252542
Milton Keynes Council Public Health Civic Offices 1 Saxon Gate East Central Milton Keynes MK9 3HN T 01908 254 213 E public.health@milton–keynes.gov.uk