Acknowledgement:
The Huntington’s Disease Association Northern Ireland (HDANI) would like to thank Marie McGill and the Scottish Huntington’s Association for allowing us to access and use all aspects of their work and experience for the benefit of HD families in Northern Ireland. In particular we should like to acknowledge the generosity of John Eden and Shona Cook who spent hours of hard work compiling this handbook, for allowing us to adapt their work for use in Northern Ireland . 1
This guide gives advice for individuals living with Huntington’s disease (HD) that will help you to manage the early symptoms. It will also let you know what services you should expect to receive and what help they can offer. General advice on issues such as finances, health and planning for the future is also included in this booklet. While it is not written specifically for carers, we think that the information in it will be useful to them too. This booklet has four sections that deal with being at risk, the early stages of Huntington’s disease, services that can help you and benefits to which you may be entitled. We have designed the booklet this way to make the information easier to access. As you read this booklet you will probably be able to relate to some of the information, but it is quite likely that you will not have experienced all of the things that are discussed. Our advice is not to read this booklet as a ‘blueprint’ for what will happen in the course of the disease. Instead, take out what you find useful in your own circumstances. If you are looking for information about the later stages of Huntington’s disease, other publications such as “The Caregiver’s Guide to Advanced HD or HD-The Facts” will be useful to you. Available on request in hard copy (small printing charge) or as a download from www.hdani.org.uk (Free) As you progress through the booklet, you will notice different icons in the right hand margin. These are our key tips and give important advice on a number of different subjects. This is how the system works: If you look at the right hand margin on this page, it shows the different icons along with the kind of information they represent. You can refer to these as a quick way of getting the most important information in each section of the booklet. At the back of this book you will find explanations of any medical terms, which are highlighted as bold text, as well as sections with helpful organisations and telephone numbers. We hope that you enjoy this booklet and find the information practical and relevant.
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This icon means the information is about health or the management of symptoms.
This icon means the information is about services that may help you.
This icon means the information is general information.
Contents Section one –
Living at risk
Risk of inheritance Genetic clinics/Genetic counselling Testing positive – carrying the gene Emotions Testing negative for the gene Relationships Family considerations Employment Section two –
Page Page Page Page Page Page Page Page
4 4 5 5 5 6 6 6
Living with early symptoms
Early symptoms of Huntington’s disease Exercise Diet Reducing stress Changing roles Keeping positive Employment Driving
Page 8 Page 9 Page 9 Page 10 Page 11 Page 11 Page 12 Page 13
Section three -
Getting help when you need it
Page 16
Section four –
A guide to benefits
Page 20
Section five –
Useful organisations
Page 23
Section six –
What’s that Jargon?
Page 24
Section seven -
Index
Page 25 3
Living at Risk Everyone learns of and deals with the knowledge that Huntington’s disease is in their family in different ways. However, knowing that a member of your family carries the genetic change or has started symptoms of HD will raise particular issues and questions for you. Risk of Inheritance If your parent carries the genetic change or has symptoms of Huntington’s disease this places you at 50% risk of also having inherited the genetic change. Learning you are at risk will probably mean that at some time you will have to think about whether or not to have the genetic test. This is a very personal choice for each individual and there are no right or wrong decisions to make. Some people choose to live without knowing their status while others find it easier to know one way or the other. When you are ready to discuss these issues usually the first step is to arrange an appointment with your local genetic centre. This is normally done through your GP. If you have any difficulties or concerns with this you can contact the Huntington’s Disease Association Northern Ireland (HDANI) for further advice. Genetic Clinics/Genetic Counselling Your genetic clinic will take you through an educational process to help you fully understand the genetics of the disorder and help you to work through the decision which is right for you. You may sometimes hear this called genetic counselling. The genetic term used to test for the presence of the gene when you have no symptoms of HD is called Predictive Testing. The genetic counsellor or doctor will meet with you on a regular basis over a period of time to allow you the opportunity to fully discuss this and to give you the opportunity to explore the possible consequences a predictive test result will have in your life. At the end of this process the decision to undergo the test is still yours to make and you can change your mind at any time. If you choose not to know you carry the gene and you go on develop symptoms of HD you will undergo a Diagnostic Test. This will confirm if you have the genetic change and the symptoms you are experiencing are due to HD.
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Individuals who do not inherit the genetic change do not develop the disease and cannot pass the gene onto any children or future generations. A Genetics specialist carries out predictive testing for HD. Although the test gives you the knowledge that at some point in your life you will develop HD. It cannot predict at which age you will start to have symptoms. Inheriting the genetic change means that at some point in life it is very likely that Huntington’s disease will start. Symptoms of the disease usually appear between the ages of 30 and 45, but some people have symptoms before this and others later in life
Testing Positive – carrying the gene Discovering you carry the genetic change is likely to be a very difficult time in your life and everyone will deal with this information in their own way, however it is normal for people to experience a range of emotions. Emotions Some people may initially experience denial or shock at the news then possibly anger. It can also be normal to look for someone to blame. You may experience fear, depression or sadness. It’s important to allow yourself to experience your own ways of dealing with your feelings. Don’t be hard on yourself, allow yourself time and seek as much support as you need to help work through these feelings. You may find that you fluctuate between these feelings at varying times, again this is a normal reaction in dealing with the news you have been given. Some people may speak openly about their situation and seek counselling support to discuss their concerns and others may not wish to discuss it with anyone, including those closest to them. The important people in your life will also be deeply affected by a positive test and are likely to experience many of the same feelings as you. Because everyone deals with their feelings in a different way it is vital that you and those close to you respect one another’s way of coping even if you do not agree with it. Testing negative for the gene If you have chosen to have the genetic test and learn that you do not carry the HD gene, you may still experience a range of emotions and need support. For example, it is not uncommon for someone receiving a negative test result to on the one hand feel relief while on the other hand to experience guilt especially if other family members have HD or receive a positive test result. Your Regional Genetic Centre will always arrange a follow-up appointment to discuss any issues and concerns. You can also contact the Scottish Huntington’s Association and talk to one of their Advisors. Some Practical considerations Having the knowledge that you carry the genetic change and that at some point in your life you will most likely develop Huntington’s disease will undoubtedly bring further concerns and issues for you to consider.
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Allow yourself time to come to terms with the result. Seek as much support as you need to help you work through the concerns and questions you will have. It may be an idea to write down the questions you have and bring them with you at your next Genetic clinic appointment. The Test can be a very stressful time for everyone whatever the outcome. Friends and family may also require support to deal with questions and issues that arise for them. HDANI can provide confidential advice to any family member or friend. Other agencies that can offer support to you or your family at this time. Your GP can recommend Counselling Services or contact HDANI
Relationships Disclosing your risk status with friends and family can be a difficult and emotional choice to make. On one hand you may feel you can discuss this openly with your family and friends but, on the other hand, you may feel protective to those closest to you and feel you need to keep this information to yourself in an effort to stop them from worrying. Generally, honesty with friends and family is the most appropriate choice in the long run. Some individuals who discover that the risk of Huntington’s disease has been kept hidden from them feel cheated that they were not given the option to make the life decisions they would have chosen had they known they were living at risk. Information, education, understanding and honesty are crucial for making informed choices. You can suggest to those closest to you to also contact The Huntington’s Disease Association for confidential support and information. Family considerations Family considerations are complex due to the hereditary nature of HD. You may be worried about the risk status of your children or about starting a family. It is important to discuss your situation with a genetic counsellor who is the most knowledgeable in this field and can help you understand all the options available. Employment Most positions of employment do not ask for a detailed medical history. If no medical recommendation is required from an employer, then it is your choice to disclose your risk status to them. However, in some areas of employment detailed medical references may be sought prior to being offered a position or it may be an ongoing condition of employment for the position you are currently in. In this situation it is advisable to be honest with your employer. Failure to disclose information when it is requested can lead to a breach of contract.
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There will be many issues for you to consider. Take each step at a time and try not to be overwhelmed by making too many decisions at once.
Relationships may need extra support at this time. If you feel things are particularly difficult to discuss you can contact an organisation called RELATE who will work with you as a couple to encourage open communication. Your Regional Genetic Centre can provide information regarding Pre Natal Testing and other information about planning a family.
Living with early symptoms The early symptoms of Huntington’s disease can be very subtle and it is not always easy to know for sure whether the problem you are worrying about is caused by the illness. For example, what if you were having a stressful time and noticed that your memory did not seem to work as well or that you felt tired more often than usual. The problem is that stress can cause these symptoms and so can HD so it may not be possible to tell which is which. It is also very common to watch for symptoms and this may make you worried that you have symptoms even if you do not. Although having the gene test is a very personal decision, it is one of the steps you will need to take if you want to be sure if you have HD or not. But it is important to take things at your own pace and feel ready to deal with hearing that you have symptoms.
Early symptoms can be detected by having a neurological examination, carried out by a doctor. This examination looks at things like balance, coordination and muscle strength. Following the examination a doctor can tell you if he thinks you have symptoms. Some people choose to return on a yearly basis so that they can get advice about the management of their symptoms.
These are difficult issues to consider and people cope in many different ways - none of which is right or wrong. You may choose not do anything about the symptoms. You could talk to a family member or friend. You might feel that you would like to talk your worries over with a doctor. Whether or not you have had the genetic test for Huntington’s disease, your local genetic centre can offer support and advice.
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It can be common to watch yourself for symptoms. Focussing on how to solve the problems that might arise from the symptoms can help.
Your Genetics centre can talk to you about concerns you may have about early symptoms and can carry out an examination that may pick up early changes that are common in HD. Some people opt to see their geneticist on a yearly basis to get advice about their condition.
It is important to let someone with HD deal with having symptoms at his or her own pace.
What are the early symptoms of Huntington’s disease? Every person is likely to have different symptoms of Huntington’s disease. Some people with the illness first have problems with their motor control. This leads to problems with involuntary movements, which you might notice as jerks or twitches or exaggerated gestures. Sometimes slight changes in balance and coordination occur, which lead to clumsiness or difficulty carrying out tasks that need fine movement control Some other people with the illness may first experience changes in mood, for example, having sudden changes in mood or being more irritable. Depression and anxiety can also occur.
It is normal for some people with early symptoms to have difficulty realising that HD is affecting them. The best way of dealing with this is to focus on individual problems rather than trying to get the person to realise that they have Huntington’s disease
Many people with early symptoms also say that they have more difficulty concentrating or planning. You may also feel more fatigued or find it harder to get motivated. The ways in which this might affect your day-to-day life are varied but can include: finding it harder to concentrate when driving or feeling less motivated in your job. It could also mean that you are less tolerant of people or that you find yourself getting angry with a partner over things that would not normally bother you.
Each person with Huntington’s disease will have a unique set of symptoms, which will progress in a unique way.
Sometimes you will not notice any changes in yourself while close family members or friends do see changes. This happens for a variety of reasons. Changes can be very small and hard to notice. Sometimes you are not ready to accept that you have symptoms. In some people, HD seems to make them less aware of symptoms. This is normal, but it is important that family members, friends and carers are aware that this is the case rather than assuming that you are refusing to deal with what is happening.
Some people will experience changes in the way they behave before they have problems with motor control.
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Exercise When asking what to do to manage the early symptoms of Huntington’s disease, exercise comes at the top of the list. It is an easy, but effective way of helping yourself. It is well-known that exercise contributes to good mental health as well as good physical health. You may know that regular exercise has been shown to be an effective way of treating depression. It can certainly contribute to a sense of well-being. There is also some evidence from the HD research community that exercise may have an impact on slowing down the motor problems caused by the illness. While no one is sure about this, the other benefits still make it a very worthwhile activity.
Regular exercise will improve your health and wellbeing and there is some evidence to suggest that it may slow down the motor symptoms of Huntington’s disease.
Regular exercise does not just involve having to go to the gym and can be as simple as going for a regular walk. If you are unsure of what type of exercise to do, your General Practitioner can give you advice. Your GP may have links with a local sports centre and may be able to refer you for advice about exercise.
Try fitting regular walks into your daily routine. Swimming is an enjoyable form of exercise that will get all of your muscles working.
Diet Getting a well balanced diet is another important way of enhancing your health and wellbeing. What you eat will be different depending on your tastes, preferences and beliefs, but there are some good guidelines from the Department of Health. You should try to eat five portions of fruit or vegetables per day. Most of the energy you need should come from eating things like bread, cereals, rice or pasta and these should make up about half of what you eat. Try to limit the amount of fatty food or sweets that you eat to one or two portions per day. Eating some dairy products is an important way of getting calcium, which you need for strong bones. You also need to eat enough protein which comes from meats, Soya or pulses. A lot of good advice is available on the internet or from your GP surgery. If you have any concerns about your diet, it might be useful to talk them over with your GP.
Some people with Huntington’s disease find that they lose weight in the later stages of the illness. For this reason, we suggest that people with HD should not be concerned if they are a little overweight.
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If you are living with someone with HD, it is important that you look after yourself too. Regular exercise can be just as beneficial for you and going together may help motivate your partner. Find out more about healthy eating at www.bbc.co.uk/food/health yeating
Reducing stress Stress is a normal part of everyday life. Whether you are stuck in a traffic jam or trying to meet a deadline you will experience a degree of stress but usually once whatever is causing the stress can be dealt with, it passes. Some stresses may be long term, for example problems in a relationship or illness. We all react differently to stress but some of the symptoms include: being irritable, fatigued, having difficulty concentrating, feeling low and fretting. If you have the early symptoms of Huntington’s disease, you may find that you experience stress and strain more easily than you used to and this in turn may lead to you noticing an increase in your symptoms. You can help yourself greatly by learning how to deal with stress. There are many ways to reduce stress which are not just about breathing exercises or relaxation techniques. Spending time on a favourite hobby, listening to music, pottering in the garden, going on a social event with friends, reading or exercising are just a few ways in which you can relieve stress. One key to keeping stress down is to spend some time thinking about the things that you enjoy that have a relaxing effect on you. Try writing out a list of things that you could do to relax. It is also important that you take time to do these activities regularly because this will help prevent stress from building up. Breathing exercises are a surprisingly good way of controlling stress and they are something that can be done anywhere, no matter what the situation. They involve taking deep breaths in through the nose and then breathing out slowly. Do this several times. Try it just now and notice the difference in how your body feels after several deep breaths in and slow breaths out. It really does have a calming effect. If you feel that your stress levels are often high and using the ideas described here don’t help, it is a good idea to talk it over with your GP.
As well as all the other benefits of exercise, it is one of the best ways of relieving stress. Try experimenting with some of the alternative therapies, which are a great way of relaxing and relieving stress. Aromatherapies, Reflexology, Reiki are examples. An important key to relaxation is to do things that are enjoyable. Many colleges run stress management courses or your GP may be able to refer you to the practice nurse who can talk to you about relaxation. Learning breathing exercises can help you to control stress in most situations.
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Keeping a positive attitude One of the challenges of living with early symptoms of HD is how to keep a positive outlook on life. It can be tough, but staying positive may mean that you feel that you are on top of the challenges that you face in life. As weird as it may sound many people living with Huntington’s disease tell us that they have found positives amongst the many difficulties that the illness brings. What would help you to stay positive? Below we have listed some ideas that may help you to keep a positive attitude. • • • • •
Deciding to make the best use of the time when you are relatively well. Putting life in perspective and worrying less about ‘the small things’. Discovering new opportunities and meeting new people. Pursuing new interests and perhaps exploring your creative side. Spending quality time with the people that are important to you.
If you find that staying positive is difficult do not give yourself a hard time about it – it is not a failure. Sometimes the things we face in life can overwhelm us and these are the times when it is important to recognise that you need support. Contact the Huntington’s Disease Association for details of local family branch support groups where you can meet other people who face the same challenges as you
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Try, as much as possible to focus on the things that are positive in your life. Let the people around you know when you need support.
Listed opposite are things people living with HD have told us about that help them to be positive.
It is natural for the people around you to be overprotective and you may need to let them know how important it is to you to be as independent as possible.
Employment Depending on what early symptoms you experience and the kind of job you do, you may have to think about how Huntington’s disease will affect your ability to work. Many people with early symptoms continue in their employment for a considerable time. This is often a very positive thing to do because it may be important to continue working for financial reasons. For some people, continuing to work can help them to feel positive about themselves, while for others it is an important way of keeping life as normal as possible. Some people do need to give up work and there is advice, later in this section, about how to get help if you decide to do this. One decision that you are likely to have to make is whether to tell your employer that you have Huntington’s disease. There are benefits in doing this. A good employer can be very supportive and this can be important in ensuring that you can continue to work for as long as possible. Unfortunately, some employers may not be so supportive and some people with HD have faced the difficult experience of losing their job after telling their employer about their illness. Fortunately employers who act in this way are in the minority. One important thing to remember is that the law does not say that you have to tell your employer that you have Huntington’s disease. However, if you apply for a job and are asked about your health, you are obliged to tell your employer about your illness. Making an untrue statement about your health could lead to disciplinary action or dismissal if you knowingly give false information. There is a law that provides some protection for people who become ill. It is called the Disability Discrimination Act. This law covers many different things and you can find out more about it from an organisation called The Disability Rights Commission. This organisation was set up by the government to give people who have health problems, advice and information about their rights in employment. They provide some very good leaflets and booklets that can help you to know your rights.
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Deciding to tell your employer that you have Huntington’s disease is a very individual decision and there are pros and cons.
Employers are required by law to do whatever is reasonable to allow you continue to work.
The Disability Discrimination Act gives workers whose health has changed some important protection
The Disability Rights Commission can give advice and information about your employment rights. You can find out more at www.drc.co.uk
One of the most important things to understand about this law is that after your employer knows about the changes to your health, they must make what are called ‘reasonable adjustments’ to your job. This means that your employer is required to do whatever they reasonably can to allow you to continue to work. Employers are not allowed to end your employment without having done this. Example: You work in an office and part of your job is to take telephone messages, but your concentration and memory are not as good as they used to be. You start to forget some of the messages that you have taken and as a result information does not get to the people it should. In this situation your employer would have a responsibility to find ways to help you to remember the messages that you take. One solution might be to provide you with a Dictaphone so that you can make a record of the message straight after the telephone call. This is just a small example of how an employer might help you to continue to do your job, but it is possible for much larger changes in your job to be made. Below are some other things that employers can think about if you are having difficulties in your job. • • • •
The Disability Employment Officer can give you and your employer advice to help support you in your workplace. You can contact them at your local job centre.
If you are a member of a union, they may be able to provide you with support advice and advocacy.
Changing or reducing the hours that you work Changing your job description Swapping your duties Providing equipment
Employers sometimes need support and there are organisations that can do this. The Disability Employment Officer can give advice to you and your employer about how you can continue to work. Finally, if you do have to give up work remember that there are many positive alternative ways to use your time. Many people have found volunteering a fulfilling and rewarding activity. There are many opportunities for education, which can range from learning a new skill like cooking to studying something that interests you. There is a great deal that employers may be able to do to help you continue to work if you wish to do so.
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If you are thinking about giving up work you may wish to look at the section of this booklet about benefits. (See page 20)
Driving If you are unsure about driving, your GP can tell you if he thinks it is safe for you to drive. Or you can contact the Northern Ireland Mobility Centre in Belfast. The address is in the right hand margin opposite
Northern Ireland Mobility Centre Portside Business Park 189 Airport Road West Belfast BT3 9ED Tel: 028 9029 7877
Before you have early symptoms of Huntington’s disease, you are not under any obligation to inform the Driver Vehicle Licensing Agency (DVLA) if you have a positive test result. However once you know that you have early symptoms of Huntington’s disease you are legally required to tell the DVLA. You can do this using form B1, which is available by telephoning the DVLA. In many instances you will be able to continue to drive. If you hold a PCV or LGV licence and driving a vehicle is the main part of your job, it is possible that you may have to give up your licence. This is likely to be decided between you, your employer, your GP and/or your employers’ medical advisor. Having to give up your job because you are unable to continue to drive does not necessarily mean having to give up driving altogether. Depending on what symptoms you have and how they affect your ability to drive, you may be able to continue to drive a car. Your GP is likely to be the most important person in giving you advice about this.
Once you have submitted your B1 form, the DVLA will tell you whether you can continue to drive and if the answer is yes, your licence will normally be continued for a fixed period, for example one or two years. After this period, the DVLA will ask to review your health. Quite often, this is done by completing a questionnaire, which they will send to you. Sometimes the DVLA may ask you to attend a medical assessment.
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You can talk to the DVLA for advice about what to do by contacting them on
0845 402 4000 dvlni@doeni.gov.uk
A medical assessment is usually with a doctor who will not know you. They will examine you and make a recommendation to the DVLA about whether they think you should continue to drive. The DVLA can decide to withdraw your licence if they consider that your health makes you unsafe to drive a car. Only the DVLA can decide to do this. This could happen after they ask you to attend for an independent medical assessment or it might happen if your own GP considers that your HD symptoms are affecting your ability to drive safely. Losing your driving licence is difficult. It is the same thing as losing a part of your independence and it can be difficult to accept. You may disagree with the decision to withdraw your licence and you do have a right to appeal against this decision. After the DVLA notify you that your licence has been withdrawn you have 28 days to lodge an appeal at your local Sheriff Court. You will need to appoint a solicitor to help you with your appeal. You can get more information about making an appeal from the DVLA. We encourage people to be independent for as long as possible and as long as it is safe for you to do so, you can continue to drive. It is important to remember that every driver has a responsibility for the safety of other road users and if you have any doubts about your ability to drive safely it is important to discuss this with your GP. People with Huntington’s disease may experience a range of difficulties when driving: • • •
Difficulty concentrating on the road Problems planning ahead or anticipating hazards Slower reactions or difficulties judging distances
If you notice any of these or you start to have bumps or near misses, then it’s time to think about stopping driving. Finally, if you do have to give up your licence there are other options that will allow you to maintain your independence. See “Door to Door” contact details opposite.
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It is always a good idea to take someone with you when you go to appointments – especially if it is with a doctor that you do not know. If possible try to get a solicitor recommended to you by someone you know. They don’t need special skills to represent you when you disagree with the DVLA. If you or a close family member has doubts about your driving, it is a good idea to see your GP about this or to attend the Driving Assessment centre once a year.
Do you know about “Door to Door” transport service? Tel: 0845 9 800 800 www.door2door-ni.info See the section on benefits at the rear of this booklet
Getting Help When you Need It If you have symptoms of Huntington’s disease you may, at some point, feel that you need help with some of the problems that you encounter. It can be difficult to take the first step in asking for help. It is worth bearing in mind that, as Huntington’s Disease is a relatively rare condition, many health professionals that you will meet are likely to know little about it. You can help them to do their job by telling them what you know about HD Make use of the experience that is available through the Association (HDANI). Most of our members will have encountered many of the same problems and will be happy to help you with advice or direct you to the best source of information. Tips for dealing with professional health organisations: Most professional staff will find this very helpful 1. Take some HD literature with you. www.hdani.org.uk 2. Do not be afraid to spend time telling them what you know about the illness. The chances are that you will know a lot more than them! 3. It is often worth taking someone with you for moral support 4. Write down a list of questions that you have before any appointment. 5. Take notes at meetings and keep a journal of your contact with them. It will help you remember important information. 6. It is highly likely you will have contact with several different professional staff. Leave them a contact number for our specialist nurse Majella who can offer sound advice and may be able to offer HD training to professional health staff caring for HD patients if necessary. 7. Throughout your contact with professional staff don’t lose sight of the fact that you are in charge of the decision-making that goes on in your meetings. 8. The Huntington’s Disease Association of Canada produces a Physician’s guide that your General Practitioner will find very helpful in knowing how to support you. You can download the Physicians Guide from www.hdani.org.uk 16
There is a publication called the “Physician’s Guide” that your General Practitioner will find very helpful in knowing how to support you. This is available from HDANI or can be downloaded from the website. www.hdani.org.uk
Who are the professionals?
What do they do?
Speech and Language Therapist
Speech and language therapists work with people to help them achieve their best level of communication. This includes speaking, listening and understanding reading and writing. They also support people who have swallowing difficulties.
Occupational Therapist
Occupational therapists (OT) work with people to enable them to achieve their maximum level of independence in each area of their lives; personal care, leisure, work. Commonly, they help with assessing adaptations or equipment that you may require in your home that will allow you to perform day-to-day tasks with the greatest level of independence. Some OT’s are also able to give advice about managing fatigue or coping with memory problems.
Social Worker
Social workers are important helpers because they are frequently the gateway to accessing other types of support – for example home help. They have the responsibility for carrying out community care assessments. You, or someone you know, have the right to request this assessment, which looks at what help or support fits with your circumstances.
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Physiotherapist
A physiotherapist can assess any difficulties that you have with your balance or coordination and sometimes a program of exercise may improve these. A walking aid like a stick can sometimes help with your stability. Physiotherapists may also be helpful in advising how to stay as fit as possible.
Dietician
Dieticians are experts on food and health. Most dieticians work in the National Heath Service (NHS). They advise people about making positive changes to their diets, check and record their progress. In HD, Dieticians can advise about problems with weight loss and they will work closely with a speech and language therapist if someone has problems with swallowing.
Psychiatrist
Psychiatrists are doctors who are specialists in mental illness. They are in charge of the treatment of people with mental health problems in hospital and in the community. Only a small number of people with HD ever need to see a psychiatrist, but they can help with many mental health problems – for example depression and anxiety.
Community Psychiatric Nurse
These are psychiatric nurses who work in the community rather than in hospitals. They may be attached to GPs' surgeries, Community Mental Health Teams, mental health centers or psychiatric units. Their role includes offering emotional support, giving help with exploring ways of living with your problem, anxiety management techniques and monitoring/administering any psychiatric medication prescribed.
Neurologist
A neurologist is a medical doctor with specialized training in diagnosing, treating, and managing disorders of the brain and nervous system. Neurologists are sometimes involved in diagnosing Huntington’s disease.
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Psychologist
Psychologists are trained in understanding how people think, feel and behave and they use this knowledge to enable individuals who are having difficulties in their lives to find ways to cope with them better. They can often help with problems like stress and anxiety and many are trained to help people to cope with changes in their memory. Some psychologists can carry out tests to help understand how well an individuals thinking processes are working. These are sometimes called cognitive tests.
Welfare Rights Officer
Welfare Rights Officers have expert knowledge about the Benefits System. They can help you apply for benefits to which you may be entitled. They can help you to appeal if you are refused a benefit and they can help you if you have worries about debt. Many social work departments employ a Welfare Rights Officer. If they do not, you should contact your local Citizens Advice Bureau for advice.
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Benefit Section Advice on every conceivable aspect of the benefit system is available through the DSD website “A to Z of benefits” www.dsdni.gov.uk/index/ssa/benefit_information/a-z_of_benefits.htm The following table lists some of the main benefits you may be entitled to, explains some of the main criteria required for each benefit and provides you with sources to contact for more information.
Benefit Working Tax Credit Working tax credit is available to help with topping up the income of people on low to moderate earnings. It is available to individuals aged 16 or over and responsible for at least one child, or aged 16 or over and disabled, or aged 25 or over and usually work at least 30 hours a week
Disability Living Allowance This benefit is paid to people who need help as a result of physical/emotional disability. There are two components to this benefit, one to help pay for any extra care costs required and one to help with mobility needs. The benefit is not means tested therefore it can be paid in addition to any other income.
Attendance Allowance Is paid to people over the age of 65 who are not receiving Disability Allowance but who also need help as a result of physical/emotional difficulties. The rules are similar to those for Disability Living Allowance care component.
General Criteria
Other information
• You must be over 16 years old • Be in employment of 16 hours per week or more • Have a disability that puts you at a disadvantage in work • Be entitled to or have recently been entitled to a qualifying benefit.
You should contact your local Citizens Advice Bureau or Benefits agency for more information regarding this tax credit.
• You must be under 65 years old at the time of claim. • Be resident in Britain. • You must have been experiencing care and mobility difficulties for three months prior to the claim and expect to meet the criteria for the six months following the claim.
There are different rates given for this benefit and the forms can be quite complex.
• You must be over 65 years old at the time of claim. • Satisfy the residence conditions. • Satisfy the disability criteria. • You must have met the qualifying criteria for six months prior to the claim.
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A web site explaining this system further is available at www.taxcredits.inlandrevenue.gov.uk
Do contact your local Benefits agency for more information and help to complete the forms.
www.dsdni.gov.uk/index/ssa/benefit_information/az_of_benefits.htm Note that to claim Attendance Allowance you must have been experiencing difficulties for six months prior to your claim. More information on all benefits can be found via the Citizens Advice Bureau at www.adviceguide.org.uk
Benefit Statutory Sick Pay
General Criteria
Other information
A payment made by employers to individuals who are off work due to ill health.
• You must be under 65 years old • Have been in employment for 3 months or more • Meet earnings criteria
Statutory Sick Pay can be paid for a maximum of 28 weeks in any one claim. If SSP is not payable Incapacity Benefit may be claimed from the benefits agency.
Incapacity Benefit
• Incapacity Benefit rules depend
This is a benefit for people who are unfit for work and either not entitled to Statutory Sick Pay or whose entitlement to SSP has ceased.
on your National Insurance contributions.
Eligibility for this benefit is complicated and you will probably need to get expert advice. You can look at the criteria in more detail on www.adviceguide.org.uk and contact your local Citizens Advice Bureau
Income Support
The criteria for income support is quite lengthy, generally you need to:
This benefit is means tested (Income related) for people on a low income.
• Be incapable of work through disability • Be a carer • Be 60 or over/or be a lone parent with a child under 16 years old • Be over 16 years of age at date Carers Allowance of claim Is a benefit for people who regularly care for another person who receives • Spend at least 35 hours a week Attendance Allowance or the caring for someone in receipt of middle/high care component of the above benefits Disability Living Allowance. • Satisfy work/study criteria • You must be responsible for Housing Benefit paying the rent, or be the partner A means tested benefit to help tenants of someone who is responsible with the payment of rent. It is administered by your local authority. It • As a means tested benefit your is payable automatically if you are in savings must be under a certain receipt of Income Support. level The amount of Income Support received depends upon savings, income and family circumstances.
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Once again it is advisable to get expert advice from your Local Citizens Advice Bureau or your benefits agency to be clear whether you are entitled to this benefit. If you satisfy the criteria for Income Support you will also automatically be able to claim maximum housing benefit and council tax credit.
The work/study criteria involve satisfying that you do not earn over a specific limit nor are you in full-time education. More information is available from the Princess Royal Carers Trust www.carers.org Council tenants, Housing Association tenants and private tenants can claim this benefit. There are other rules that that govern the payment of this benefit. You can contact your local Citizens Advice Bureau or Benefits Agency for more information on Housing Benefit and Council Tax Benefit.
Benefit Council Tax Benefit You can claim for Council Tax benefit and a second adult rebate through your local Authority.
Other benefits that may help Prescription Charges Sight tests and Glasses Dental Treatment
General Criteria
Other information
• You must be on a low income • Have under the allowed savings criteria • Be resident owner • Be resident tenant
There are other eligible criteria for a full or half exemption from payment. For example if the people who occupy the property have a “severe mental impairment” a full rebate will be given. Carers of an individual who is in receipt of higher rate Attendance Allowance/Disability Living Allowance can receive reduced liability.
.
A person on a low income can claim help with these costs.
• You must be on a low income • You must satisfy all the criteria
Some people are automatically entitled to exemption from charges or help with these costs.
Concessionary Travel: Blue Badge Scheme Door2Door Transport Service Bus Passes Help with travel costs can be provided by your Local Authority.
• Generally, local authority criteria for help with Concessionary travel involve either being elderly, physically disabled or medically unfit to drive.
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A form called HC1 needs to be completed to assess eligibility. Your Citizens Advice Bureau or Benefit Office will advise you on this.
Contact your local authority/social work dept. or visit the following websites www.roadsni.gov.uk/index/bluebadge.htm www.door2door-ni.info www.translink.co.uk/seniorcitizenpass.asp
Useful Organisations and contact numbers Dept. of Medical Genetics Belfast City Hospital Trust Lisburn Road Belfast BT9 7AB 028 9026 3982 Huntington’s Disease Association helpline Pat McKay 028 9022 1950
Northern Ireland Mobility Centre Portside Business Park 189 Airport Road West Belfast BT3 9ED Tel: 028 9029 7877 “Door 2 Door” transport service Tel: 0845 9 800 800 www.door2door-ni.info Driver & Vehicle Licensing 0845 402 4000 dvlni@doeni.gov.uk Office for Disability Issues www.officefordisability.gov.uk
Huntington’s Disease Association Development Officer Errol Walsh 0795 409 8051
Benefits Allowance and Attendance Allowance helpline 0845 601 8822
Relate helpline 0870 242 6091
Pension credit Application Line 0808 100 6165
Citizen’s Advice Bureau Phone numbers vary according to your area location. See phone book http://www.citizensadvice.co.uk
Samaritans 028 90664422 Website: www.samaritans.org.uk
Shelter 0808 800 4444
Money Advice N. Ireland 028 9064 5919 www.adviceni.net
Disability Action Portside Business Park 189 Airport Road Belfast BT3 9ED Tel: 028 9029 7880
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What’s that jargon? In this booklet we have used as little ‘jargon’ as possible. We have used some medical terms here and there and these are explained below. Predictive testing
Having a genetic test before you have symptoms of the disease in order to find out whether or not the gene change has been passed on.
Diagnostic testing
Having a genetic test to confirm that you have symptoms of the disease.
Neurological
Anything to do with your nervous system.
Motor
Means your muscles are involved.
Motor control
How well your brain can control the way your muscles work.
Hereditary
Means it passes through families (from affected parents to children)
Genetics
Genetics is the study of what make up an animals or plants. DNA carries all the information needed to make a plant or animal and genetics is the science that tries to understand how it all works.
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Index benefit system ............................................................... 20 Diagnostic Test................................................................ 4 Diet .................................................................................. 9 Driving ...................................................................... 14,15 early symptoms .............................................................. 8 Emotions.......................................................................... 5 Employment............................................................ 12, 13 Exercise........................................................................... 9 Family considerations ...................................................... 6 gene ............................................................................. 4,5
genetic clinic.................................................................... 4 genetic test ...................................................................... 4 Inheritance....................................................................... 4 motor control ................................................................... 8 positive attitude ............................................................. 11 Predictive Testing ............................................................ 4 Relationships................................................................... 6 risk............................................................................... 4,7 stress............................................................................... 7 Testing negative .............................................................. 5
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