Cg35 parkinson's disease: information for the publicUnderstanding NICE guidance
Information for people who use NHS services
NICE ‘clinical This booklet is about the care and treatment of people with Parkinson'sdisease in the NHS in England and Wales. It explains guidance (advice) from NICE (the National Institute for Health and Clinical Excellence). It is the NHS on caring written for people with Parkinson's disease but it may also be useful for for people with their families or carers or for anyone with an interest in the condition. The booklet aims to help you understand the care and treatment options or diseases and the that should be available in the NHS. It does not describe Parkinson's treatments they disease or the tests or treatments for it in detail. A member of your should receive. healthcare team should discuss these with you. There are examples ofquestions you could ask throughout this booklet to help you with this.
Some sources of further information and support are on page 16.
Information about NICE clinical guideline 35
Issue date: June 2006
Parkinson's disease Discussing your condition and getting information Medical treatments Trying to protect the brain cells Treating other symptoms Planning care for the advanced stage of Parkinson's disease More information about Parkinson's disease The advice in the NICE guideline covers:
• the diagnosis of Parkinson's disease and checking the diagnosis regularly • the way people with Parkinson's disease should receive information • the medicines that can be used • other ways of helping with symptoms • how to care for people whose mental health is affected • the care people with Parkinson's disease should receive at the end of It does not specifically look at:
• treatments that aren't common (for example, treatments that are in development or are not yet proven, such as fetal cell transplantation) • other illnesses or health problems that can affect a person with Parkinson's disease (except where treatment needs to be different for a person with Parkinson's disease).
Information about NICE clinical guideline 35
Your treatment and care should take into account your personal needs and preferences, and you have the right to be fully informed and to makedecisions in partnership with your healthcare team. To help with this, yourhealthcare team should give you information you can understand and thatis relevant to your circumstances. All healthcare professionals should treatyou with respect, sensitivity and understanding and explain Parkinson'sdisease and the treatments for it simply and clearly.
This information, and any discussions you have with your healthcare team, should include details of the possible benefits and risks of particulartreatments. You can ask any questions you want to and can always change your mind as your treatment progresses or your condition orcircumstances change. Your own preference for a particular treatment is important and your healthcare team should support your choice oftreatment wherever possible. Your treatment and care, and the information you are given about it,should take account of any religious, ethnic or cultural needs you mayhave. It should also take into account any additional factors, such asphysical or learning disabilities, sight or hearing problems, or difficultieswith reading or speaking English. Your healthcare team should be able toarrange an interpreter or an advocate (someone who supports you inasking for what you want) if needed.
If you agree, your carers and relatives should have the chance to beinvolved in decisions about your care. Carers and relatives also have theright to the information and support they need in their roles as carers.
If people are unable to understand a particular issue or are not able tomake decisions for themselves, healthcare professionals should follow theadvice that the Department of Health has produced about this. You canfind this by going to the Department of Health website (www.dh.gov.uk)and searching for information on ‘consent'.
Information about NICE clinical guideline 35 3
Parkinson's diseaseParkinson's disease is a disease of the brain that progresses over time. Itmainly affects older people, but it can also affect younger people. It happens because of an imbalance in ‘messengers' in the brain. This iscaused by the loss of cells that produce a messenger called dopamine,which is involved in controlling muscles. Levels of dopamine are closelylinked with the levels of other chemicals in the brain, including one calledacetylcholine. The low levels of dopamine, together with changes in otherchemicals (including acetylcholine) lead to the symptoms of Parkinson'sdisease. At present, it is not known what causes the loss of the cells thatproduce dopamine.
The symptoms of Parkinson's disease typically include: • slow movements – it becomes difficult to start to move or it takes longer to make movements (called bradykinesia) • rigid or stiff muscles that can make some everyday tasks uncomfortable • shaking, called tremor, in a part of the body when it's not being used – this usually happens in a hand or arm at first.
Parkinson's disease can also affect your balance and how you walk (gait).
Although it mainly affects movement, people may have other symptoms.
But it is important to remember that Parkinson's disease affects peopledifferently and to different degrees and you may not experience all of thesymptoms described. The symptoms of Parkinson's disease can also occur in people who haveother disorders. This is known as parkinsonism.
DiagnosisIf your doctor thinks you may have Parkinson's disease, you should see a Parkinson's specialist (a neurologist or geriatrician) quickly for diagnosis.
If it seems that you may be in the early stages of Parkinson's disease, youshould see the specialist within 6 weeks. But if it is thought that you couldbe in the later stages, you should usually see the specialist within 2 weeks. At present, there isn't a reliable test that tells whether a person hasParkinson's disease or not. The specialist makes a diagnosis by examiningthe person and their symptoms and from knowledge about the person'sprevious health. Information about NICE clinical guideline 35
You should not be given any treatment until you have seen the specialist. If you have tremor and your specialist isn't sure whether it's happeningbecause you may have Parkinson's disease, you may be offered a brain scancalled a SPECT scan. The results can give more information about thecauses of the tremor. Sometimes a test called structural MRI may be used if your specialistsuspects there could be another cause of your symptoms other thanParkinson's disease. You should not be offered other tests, unless you are taking part in aresearch study (clinical trial). Once a diagnosis has been made
If you're diagnosed with Parkinson's disease, the diagnosis should be
reviewed regularly (every 6–12 months) by your specialist. If you develop
new symptoms that don't seem to be linked with Parkinson's disease, your
specialist should consider other causes for your symptoms.
Questions you might like to ask your healthcare
• Please tell me more about Parkinson's disease.
• How might it affect my everyday activities, such as writing • Are there any support organisations in the local area? • Can you provide any information for my family/carer? Information about NICE clinical guideline 35 5
Discussing your condition and getting informationCommunication between you and your healthcare team and theinformation you are given should help you to take part in discussions aboutyour condition, and make choices about the treatment you have. Healthcare professionals should give you written information and talk toyou in a way that suits your individual needs at every stage of your care. Ifyour needs change because your symptoms change or get worse, the waythat you're given information should also change. It's also important thatyou're given consistent information from all the people you see. When they're talking to you, your specialist and other healthcareprofessionals should be honest and realistic about the future. But theyshould also explain that although there is not a treatment for Parkinson'sdisease itself, the symptoms can be treated, and there is a lot of researchgoing on to find an effective cure and new treatments. A plan of your care should be agreed with you, your family or carers andyour healthcare professionals. You should also be given the name ofsomeone in specialist services who you can contact if you have anyquestions or concerns, who may be a Parkinson's disease nurse specialist, if you have one in your area. Your family members or carers should also be given information aboutParkinson's disease and the support services that are available. Thearrangements for assessing the support that you or your carers needshould also be explained. People with Parkinson's disease who drive should be advised toinform the Driver and Vehicle Licensing Agency (DVLA) and their carinsurer about their condition when they are diagnosed. You mightlike to talk to your healthcare professional about this.
Information about NICE clinical guideline 35
General careIf you have Parkinson's disease, a healthcare professional should provideyou with help in the areas listed below. You should have someone who: • regularly checks how your medicines are making you feel, and makes changes if they are needed • is a point of contact and support for you and your family or carers, and can come to see you at home, when appropriate • gives you reliable information about Parkinson's disease and its symptoms and treatments, and the wider issues that can affect peoplewith the disease and their family or carers. A Parkinson's disease nurse specialist may do this. He or she is a nurse whospecialises in caring for people with Parkinson's disease, and works closelywith other specialists to provide care tailored to your needs. Supportive therapies
Physiotherapy, occupational therapy and speech and language therapy
should be available to people with Parkinson's disease. These types of
therapy aim to help you with your symptoms in your day-to-day life.
Physiotherapy involves using exercises and other physical strategies to
• walking, balance and flexibility • aerobic fitness (the sort of exercise that makes your heart and • how well you can do things for yourself (for example, how easily you get around, and how well you can carry out everyday tasks).
Physiotherapists can also give you advice on staying safe at home. A technique called the Alexander technique may be helpful for improvingyour day-to-day movement. You can ask your healthcare professional formore information. Information about NICE clinical guideline 35 7
Occupational therapy aims to help you to overcome the effects of your
symptoms in your day-to-day life. It could help you to:
• carry on with your usual activities at work and in your home for as • carry on with your hobbies and other leisure activities • improve your mobility, or reduce the effect of mobility problems on your • be as independent as possible in looking after yourself, for example finding easier ways for you to eat, drink, wash and dress • ensure your house or place of work is safe and suitable for you. An occupational therapist can also help if you have specific needs becauseyou sometimes become confused or distracted. Some treatments
may not be suitable Speech and language therapy
for you, depending
Speech and language therapy involves using vocal exercises and otherexercises to help you communicate as clearly as possible. Therapists can on your exact also provide equipment if speaking unaided becomes too difficult. Speech circumstances. If and language therapy could help to: you have questions • make your voice louder and sound more natural about the specifictreatments and • make sure that you can be understood (in the later stages you may need something to help, such as a voice amplifier, although there are options covered in different types of aid) this booklet, please • check that you can swallow well enough and that you are doing talk to a member of your healthcareteam. Medical treatmentsIn this booklet, ‘early disease' refers to Parkinson's disease in people whohave started to have problems and need treatment for their symptoms.
‘Later disease' refers to Parkinson's disease in people taking levodopa (seepages 9 and 10) who have developed involuntary movements (movementsthey cannot control) or 'wearing off' of the effects of levodopa (whensymptoms come back before the next dose is taken).
Information about NICE clinical guideline 35
Early Parkinson's disease
There is no one particular medicine that is a suitable treatment for
everyone in the early stages of Parkinson's disease.
Your specialist should explain the differences between the types ofmedicine, how each type might help you in the short and long term anddescribe the drawbacks of each treatment. When deciding which one totry, it's important to think about the things that are important to you inyour daily life, and your current symptoms and health. All this should becovered in your discussions. Many people with Parkinson's disease find ithelpful to make a short list of points they want to discuss. You may alsofind it helpful to take a friend or family member with you. Some questionsyou may want to ask are shown on page 11.
The box below shows the different types of medicine that can help withsymptoms in the early stages of Parkinson's disease. Which one you areoffered first will depend on your individual symptoms, circumstances and preferences.
Options for early Parkinson's disease
One of the medicines in the top three boxes should be offered to you first.
Type of medicine
Levodopa may be used but a type called modified-release or long-acting levodopa should not be used totry to delay complications (such as movements youcannot control) from starting. Blood tests and a chest X-ray are needed beforestarting treatment if a particular type of dopamineagonist (‘ergot-derived') is used. These tests shouldalso be done on a yearly basis while taking themedicine.
These are suitable for certain people only, and shouldnot be the first medicines tried.
This should not be the first medicine tried.
These should not be the first medicines tried. Information about NICE clinical guideline 35 9
Later stages of Parkinson's disease
All people in the later stages of Parkinson's disease will need to take
levodopa, even if they start off on a different medicine. Other medicines
may also be needed to help boost the effects of the levodopa. Which
type of medicine is most helpful will depend on your symptoms and the
stage of your disease, and also your lifestyle and wishes. Your specialist
should explain the differences between the types of medicine, how each
type might help you in the short and long term and describe the
drawbacks of each type. The box below shows the different types of
medicine that can help with symptoms in the later stages of Parkinson's
Options for later Parkinson's disease
One or more of the medicines below may be used as well as levodopa.
Type of medicine
Blood tests and a chest X-ray are needed beforestarting treatment if a particular type of dopamineagonist (‘ergot-derived') is used. These tests shouldalso be done on a yearly basis while taking themedicine. If a COMT inhibitor called tolcapone is used, theperson will need to have checks on their liver (every 2 weeks during the first year of treatment).
Apomorphine injections may be given from time totime to help cut down off time (when symptomssuddenly come back for a period of time). Ifsymptoms are severe, apomorphine may becontinuously delivered into the body through a tubeunder the skin. This should be set up in a specialistunit. Modified-release or
This type of levodopa (which is designed to stay in the body longer than normal levodopa) should not be thefirst medicine tried.
Information about NICE clinical guideline 35
Medicines for Parkinson's disease should not be stopped abruptly. Forexample, if you are admitted to hospital you should keep taking yourmedicines as you were (with support from hospital staff if necessary) unless they need to be changed. Any change should only be made afterdiscussing it with you. Also, care should be taken to make sure thatmedicines don't stop working suddenly because of problems like stomachbugs that cause sickness and diarrhoea (gastroenteritis) or if a person hassurgery on their abdomen. You should not be offered a ‘drug holiday',where the medicine is withdrawn for a period of time. Because sudden changes in medicines used for Parkinson's disease cancause problems (such as involuntary movements), people who have beenadmitted to hospital or a care home should have their medicine adjustedby a specialist, or by another healthcare professional after he or she hasdiscussed it with a specialist. Your healthcare professional may suggest thatyou look after taking your medicine yourself so that you can do this at themost appropriate time. Questions you might like to ask about treatment
• Please tell me why you have decided to offer me this particular • What are the pros and cons of this treatment? If you think that • Please tell me what the treatment will involve.
your care does notmatch what is • How will the treatment help me? What effect will it have on my symptoms and everyday life? What sort of improvements described in this booklet, please talkto a member of • How long will it take to have an effect? your healthcare • Are there any side effects associated with this treatment? • What are my options for taking treatments other than the recommended treatment? • Is there some written material (like a leaflet) about the treatment Information about NICE clinical guideline 35 11
Trying to protect the brain cellsBecause Parkinson's disease is caused by a reduction in the number of certain cells in the brain, there have been efforts to find medicines that protect the remaining brain cells. This is called neuroprotection orneuroprotective therapy. At the moment there is not enough evidence tojustify taking medicines routinely for neuroprotection, and you should notbe offered any unless you are taking part in a research study (clinical trial).
Surgery Most people with Parkinson's disease are treated with medicines alone.
However, sometimes specialised surgery called deep brain stimulation maybe used, in which electrical signals from a tiny implant in the brain help toreduce a person's symptoms. This should only be used for people who: • still have a lot of off time (when symptoms suddenly come back for a period of time) or involuntary movements in spite of changes to theirmedicine, • are generally fit and have no other major health conditions, • have responded to levodopa all along, and • have no current mental health problems, such as depression or dementia. The surgery can be done in different areas of the brain, although usually it is done in a part called the subthalamic nucleus (the procedure is called subthalamic or STN stimulation). If you are considering surgery forParkinson's disease, your specialist should explain the type of surgery youare being offered and discuss the possible benefits and risks with you. It isimportant for you and your specialist to think about the things that areimportant to you in your daily life, and your current symptoms and health. Treating other symptomsPeople with Parkinson's disease can develop other problems besides themain symptoms affecting movement. Depression
If you have depression, it should be treated in a way that takes account
of the other treatment you are receiving and it should suit your
Information about NICE clinical guideline 35
Psychosis is the medical term for mental health problems that stop
a person from understanding what's real and what's not (called
hallucinations), thinking clearly and acting in a normal way. If you have
psychosis, you should have a thorough evaluation of your health to try to
understand what may be triggering the psychosis. You should also be
offered treatment as appropriate.
If it's possible that one of your medicines for Parkinson's disease might becausing your psychosis, your specialist should think about graduallystopping the medicine. But if the psychosis is mild and the symptoms aren't causing you or yourcarers too many problems, you and your specialist may decide that thebenefits of your Parkinson's disease medicines outweigh the drawbacks of the psychotic symptoms. If this is the case, you and your specialist may decide not to change your medicines. Medicines that would normally be used to help psychosis (called ‘typicalantipsychotics') shouldn't be prescribed because the side effects of thesecan make the symptoms of Parkinson's disease worse. Sometimes,medicines called ‘atypical antipsychotics' may be offered. A medicine called clozapine may be used to help with psychotic symptoms,but if you take this your specialist has to register you with a monitoringscheme. This is because a small number of people taking clozapine have aserious side effect which stops (or slows down) the bone marrow makingwhite blood cells. This is called agranulocytosis. It's important that this ispicked up early because the condition can be fatal. You need to haveregular blood tests if you're taking clozapine. Dementia
Up to one in five people with Parkinson's disease have dementia, which
can have symptoms such as memory loss, confusion and speech problems.
A type of medicine called a cholinesterase inhibitor has worked for some
people with this type of dementia. The NICE guideline recommends that
more research is done to find out which patients would benefit from
treatment with cholinesterase inhibitors.
Information about NICE clinical guideline 35 13
People with Parkinson's disease sometimes have problems with their
sleeping patterns. Some people may feel an overwhelming need to sleep
during the daytime. It can also be difficult to move or turn in bed at night.
This is called nocturnal akinesia.
If your sleeping patterns have changed, your healthcare professionalshould discuss this with you and take details of the problems you arehaving and how long it has been happening. They should also advise youon steps you can take to help you sleep better, such as avoiding caffeine at night and keeping to a regular sleep pattern. A bed lever or rails may be provided to help with moving and turning and medicines may be If it appears that a reviewed to avoid any drugs that may affect sleep or alertness. If your Parkinson's disease makes you want to sleep in the daytime, you in this booklet is may be offered a medicine called modafinil, which works to make you feel suitable for you, but it is not available, If you have nocturnal akinesia, switching to modified-release or long- you should talk to acting levodopa may be an option. Long-acting levodopa is made in your local Patient such a way that its effects should last for longer in the body than Advice and Liaison normal levodopa. Service (PALS) in the Healthcare professionals should look out for two other problems with first instance. If they sleep in people with Parkinson's disease. One is called ‘restless legs are not able to help syndrome', where the person has uncomfortable sensations in the legs and you, they should feels an uncontrollable need to move them. This often happens when theperson is resting and so can be a problem at night. The second is called refer you to your REM sleep behaviour disorder, where the person may ‘act out' their local Independent dreams and move and jerk a lot in their sleep. If you have either of these problems you can ask for help from your healthcare professionals. Advocacy Service. People who may fall asleep suddenly should be advised not to drive. Theyshould also be aware of ways in which this may affect their job, such astheir safety if operating machinery. Your medicine should be adjusted tostop this happening as much as possible. Information about NICE clinical guideline 35
The symptoms of Parkinson's disease, such as stiffness in the muscles, can
lead to problems with falls or the fear of falling.
NICE has issued some guidance on what to do when an older person falls and how to prevent falls1. Healthcare professionals should follow this guidance whenever the problem applies to a person with Parkinson's disease. Other problems
Parkinson's disease can also cause other problems because the messages
to the nerves get disrupted. If you have any of the following, you should
be offered treatment to help:
• problems passing urine • difficulty swallowing • problems getting or maintaining an erection • feeling faint when you stand up because of low blood pressure • excessive sweating • dribbling or drooling. Planning care for the advanced stage ofParkinson's diseaseYour healthcare professionals should invite you to discuss the support andchoices that are available and to plan together the care you want toreceive when you are nearing the end of your life. You should be put in touch with an appropriate person if you want todiscuss the arrangements about your death or if you want to talk abouthow you feel about dying. Similarly, your family or carers should haveaccess to this type of support. 1 Falls: The assessment and prevention of falls in older people (2004). Available from www.nice.org.uk/CG021
Information about NICE clinical guideline 35 15
More information about Parkinson's diseaseThe organisation below can provide more information and support forpeople with Parkinson's disease. Please note that NICE is not responsiblefor the quality or accuracy of any information or advice provided by this organisation.
• Parkinson's Disease Society, freephone helpline 0808 800 0303, NHS Direct online (www.nhsdirect.nhs.uk) may also be a good startingpoint for finding out more. Your local Patient Advice and Liaison Service(PALS) may also be able to give you further information and support.
About NICENICE produces advice (guidance) for the NHS about preventing, diagnosing and treatingdifferent medical conditions. The guidance is written by independent experts includinghealthcare professionals and people representing patients and carers. They consider the bestavailable evidence on the condition and treatments, the views of patients and carers and theexperiences of doctors, nurses and other healthcare professionals working in the field. Staffworking in the NHS are expected to follow this guidance.
To find out more about NICE, its work and how it reaches decisions, seewww.nice.org.uk/aboutguidance This booklet and other versions of this guideline aimed at healthcare professionals areavailable at www.nice.org.uk/CG035 You can order printed copies of this booklet from the NHS Response Line (phone 0870 1555 455 and quote reference N1053). National Institute for Health and Clinical Excellence
MidCity Place, 71 High Holborn, London, WC1V 6NA, www.nice.org.uk
ISBN 1-84629-225-5N1053 10k 1P Jun 06 National Institute for Health and Clinical Excellence, June 2006. All rights reserved. This material may be freely reproduced for educational and not-for-profit purposes. No reproduction by or for commercialorganisations, or for commercial purposes, is allowed without the express written permission of the Institute.
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