Multiple Sclerosis Service

Transcription

1 Multiple Sclerosis service Information for patients Douglas Grant Rehabilitation Centre Ayrshire Central Hospital Kilwinning Road IRVINE Ayrshire KA12 8SS Multiple Sclerosis Service Information for patients Douglas Grant Rehabilitation Centre Ayrshire Central Hospital Kilwinning Road IRVINE Ayrshire KA12 8SS Visit our website: All our publications are available in other formats MIS CC Multiple Sclerosis service A5 leaflet.indd 1 29/3/11 10:17:23

2 ...Information for you...information for you...information for you...info Contents Introduction 05 Referral to the Ayrshire & Arran MS Service 05 The multidisciplinary team 06 Out-patient clinics 10 In-patient treatment 10 Day case treatment 11 Continence services 11 Sexual health in MS 11 What is MS? 11 Management and drug therapy in MS 13 The Multiple Sclerosis Society 16 The MS Trust 16 MS Research & Clinical Trials 17 MS Managed Clinical Network 17 Useful contact details 18 MS literature 20 Acknowledgements 22 2 MIS CC Multiple Sclerosis service A5 leaflet.indd 2 29/3/11 10:17:23

3 you...information for you...information for you...information for you Introduction NHS Ayrshire and Arran s Multiple Sclerosis Service is based at the Douglas Grant Rehabilitation Centre, Ayrshire Central Hospital. The Centre was the first purpose-built unit in the West of Scotland, opened in The building was designed to provide the best equipment and facilities in a comfortable, relaxing and spacious environment. The Centre also provides elderly rehabilitation alongside neurological rehabilitation, for which it is now better known. All patients are supported to achieve their fullest potential through holistic assessment, supportive treatment and reviews. The Douglas Grant Rehabilitation Centre The Douglas Grant Rehabilitation Centre is named after Dr Douglas T Grant, who was a Consultant Physician in Care of the Elderly Medicine at Ayrshire Central Hospital from 1962 until he retired in Dr Grant was instrumental in bringing the Rehabilitation Medicine Service to Ayrshire and Arran. The Ayrshire and Arran MS Service has grown steadily within that service since 1992, linking with the wider hospital and community provision of health, social services and the voluntary sector. It is well respected throughout the UK as a centre of excellence. 3 MIS CC Multiple Sclerosis service A5 leaflet.indd 3 29/3/11 10:17:23

4 ...Information for you...information for you...information for you...info There has been a history of introducing novel treatments and patient involvement in research. Patients can contact the service directly at any time as required. There is a range of MS clinics weekly, from the Newly Diagnosed to regular review and treatment review. The past few years have seen the expansion of a dedicated specialist team, which is now multidisciplinary, and offers streamlined services within the centre and within the community and home settings. This provides the ability to offer personalised, rapid consultation and treatment options. Referral to the NHS Ayrshire & Arran MS service Initial referral to the Ayrshire & Arran MS service is generally via your Neurologist or General Practitioner. Once you are registered with the Ayrshire & Arran MS service you will continue to be part of our routine review programme. If you are found to be keeping well, with no notable change in your condition for some time, we may not make any routine review appointments. However, you will continue to be registered with the Ayrshire & Arran MS service and we will be contacting you from time-to-time to see how you are. If you do develop any new symptoms or you are concerned about any changes in your condition then we ask that you contact us directly. 4 MIS CC Multiple Sclerosis service A5 leaflet.indd 4 29/3/11 10:17:23

5 you...information for you...information for you...information for you The Ayrshire and Arran MS Service operates a self-referral system for patients who are already registered with the Service. You do not have to wait until your next appointment letter is received if you feel you would benefit from seeing either the Consultant, MS Specialist Nurse or a therapist sooner. Please contact the relevant department where an appropriate appointment will be made for you. It may be that you just need to speak with someone over the telephone. There is also the Ayrshire and Arran MS telephone helpline, further details on the back page of this booklet. To make an appointment contact: Consultant /30 MS Specialist Nurse /30 Physiotherapy Occupational Therapy Speech & Language Therapy Dietitian Psychology MIS CC Multiple Sclerosis service A5 leaflet.indd 5 29/3/11 10:17:23

6 ...Information for you...information for you...information for you...info The multidisciplinary team The MS multidisciplinary team comprises: A consultant in Rehabilitation Nursing, including two MS Specialist Nurses Physiotherapy, including a Consultant MS Physiotherapist Occupational Therapy, including MS Specialist Occupational Therapist Speech and Language Therapist Dietitian MS Specialist Clinical Psychologist The Douglas Grant Rehabilitation Centre also offers: Wheelchair services Orthotic services Driving assessment Consultant physician in rehabilitation medicine There is one consultant for the Ayrshire and Arran MS service, who is based at the Douglas Grant Rehabilitation Centre. The consultant is also the clinical lead for the MS Managed Clinical Network. The consultant is available at the Centre Monday to 6 MIS CC Multiple Sclerosis service A5 leaflet.indd 6 29/3/11 10:17:23

7 you...information for you...information for you...information for you Friday. You can contact the Consultant through their secretary on MS specialist nurses Telephone There are two full-time MS Specialist Nurses (MSSN). They are available to consult with anyone with MS or their relatives, carers or advocates. They have attained specialist knowledge of MS and its management, and thus are available for all levels of education, information, advice and support. The MS Specialist Nurses are in contact with other specialist services and agencies within Ayrshire and throughout Scotland and the UK, in order to ensure the best possible service to people in Ayrshire & Arran. The nurses are available from time of diagnosis to give the appropriate information at that time, and to offer emotional support to assist you to reach an understanding of the disease as early as possible. They participate in newly diagnosed educational sessions that run three to four times per year. The nurses triage most of the calls coming into the service from or about MS patients. They are involved in assessment of patients at initial clinic appointment, times of relapse and for complex problems and advanced treatment needs. They also participate in provision of specialised treatments 7 MIS CC Multiple Sclerosis service A5 leaflet.indd 7 29/3/11 10:17:23

8 ...Information for you...information for you...information for you...info such as the outpatient steroid service, delivery of training for injectable disease modifying therapies, as well as advanced therapies. They run nurse-led clinics, consult from their office, carry out home or hospital visits, and are involved in care planning meetings with all agencies. Physiotherapy Telephone The Physiotherapy (PT) Department offers a comprehensive range of services which aim to maximise your abilities and minimise the impact that any physical problems may have on your life. Physiotherapy is provided to individuals either as an inpatient in Pavilion 11, Ayrshire Central Hospital, or as an outpatient. Outpatient services are usually provided at the Douglas Grant Rehabilitation Centre, however, physiotherapy can be arranged nearer to your home. Some of the more common problems that physiotherapy can help with are: Pain Muscle weakness Balance difficulties Fatigue 8 MIS CC Multiple Sclerosis service A5 leaflet.indd 8 29/3/11 10:17:23

9 you...information for you...information for you...information for you Muscle tightness and spasm Walking difficulties If you feel you would benefit from attending physiotherapy you can be referred either by your General Practitioner, Health Care professional or, if you are a patient of the Consultant in Rehabilitation Medicine, you can refer yourself. The MS specialist physiotherapist can also visit you at home if necessary. Occupational therapy Telephone An Occupational Therapist (OT) will work with you to enable you to maintain or improve independence in everyday tasks. This may include areas of self care (for example, dressing, bathing, eating), productivity (for example, cleaning, laundry, cooking, paid/ voluntary employment), and leisure (for example, hobbies, travel, visiting friends). The occupational therapist can help you to identify the areas which are important and then design a programme to suit your needs. This may include: Advice to help stay in work Information and support Provision of equipment and referral to Social 9 MIS CC Multiple Sclerosis service A5 leaflet.indd 9 29/3/11 10:17:23

10 ...Information for you...information for you...information for you...info Service occupational therapy for adaptations Exercise programmes to develop strength and co-ordination Splinting to protect and rest your joints Techniques to help your memory Advice to help manage fatigue. This will be done through the use of a problemsolving approach to overcome specific difficulties either as an inpatient, outpatient or visit to your own home. Referrals are made to an occupational therapist by the multidisciplinary team at the Douglas Grant Rehabilitation Centre. The occupational therapist will maintain contact with you depending on your specific needs. If you wish to contact the occupational therapist at your local Social Services Office, you can find the numbers in the local telephone directory under East Ayrshire Council, North Ayrshire Council or South Ayrshire Council. Speech and Language Therapy Telephone The Department of Speech and Language Therapy (SLT) based at the Douglas Grant Rehabilitation Centre is pleased to provide a service for people 10 MIS CC Multiple Sclerosis service A5 leaflet.indd 10 29/3/11 10:17:23

11 you...information for you...information for you...information for you with MS as part of the multi-disciplinary team. The service is led by a Senior Speech and Language Therapist. In relation to Speech and Language Therapy, the most common problems that people with MS experience are with speaking and or swallowing. Typical examples of these speech problems include pronunciation that is less accurate or imprecise; your voice may sound quieter than usual or have a husky quality; your speech may sound rather monotonous, less tuneful than it used to be. Typical problems with swallowing may involve difficulty chewing certain foods; coughing after drinking; finding certain textures hard to swallow. However, it is certainly not the case that everyone with a diagnosis of MS inevitably has speech or swallowing problems. It is also possible for the onset of such a problem to be of a temporary nature, related to the pattern of your MS. Each person with MS is an individual with their own difficulties and their own distinctive way of coping with them. Should you at any time feel concerned that you do have a problem with speaking or with any other aspect of communication or with swallowing, then we would encourage you to ask the Consultant in Rehab Medicine or one of the health professionals, to refer you to a Speech and Language Therapist. 11 MIS CC Multiple Sclerosis service A5 leaflet.indd 11 29/3/11 10:17:23

12 ...Information for you...information for you...information for you...info If you would rather refer your self then you can do so by contacting the Speech and Language Therapy Department. Early referral means we can do our best to provide you with relevant advice, techniques or perhaps a course of exercises to best manage your problem at an early stage. Even if you feel uncertain about whether you really do have a significant speech or swallowing problem and would just like to talk it over with an experienced Speech and Language Therapist, we would be happy to hear from you and provide you with that opportunity. Dietitian Telephone The Department of Dietetics, although not based at the Douglas Grant Rehabilitation Centre, provides a service for people with MS as part of the multidisciplinary team. Nutrition and well-being is important to everyone. Symptoms such as fatigue, swallowing problems and disability in MS may all impact on nutritional intake and consequently a person s nutritional status. The Dietitian is able to offer assessment and advice on a range of nutritional related issues. Should you at any time feel concerned that you do have a problem with nutrition and well-being, then we would encourage you to ask the Consultant or one of the health professionals in the team, to 12 MIS CC Multiple Sclerosis service A5 leaflet.indd 12 29/3/11 10:17:23

13 you...information for you...information for you...information for you refer you to the Dietitian. If you would rather refer your self then you can do so by contacting the department on the number above. Early referral means we can do our best to provide you with relevant advice to best manage your problem at an early stage. Psychology Telephone Psychologists play an active role in helping you to manage your MS. They work with you to help you look at ways of coping with and living with MS, and to address any cognitive problems which may be present or arise later. Cognitive problems include difficulties with memory, attention, concentration, problem solving and the ability to use language. Some people with MS may find they experience difficulty in some of these areas. Psychologists can assess and help you to cope with such difficulties. Referral to this service is by a member of the MS Multidisciplinary Team. Outpatient clinics Telephone There are several different MS clinics and you may attend more than one of these clinics. Our MS Clinics are: Relapse Clinic (Monday) 13 MIS CC Multiple Sclerosis service A5 leaflet.indd 13 29/3/11 10:17:23

14 ...Information for you...information for you...information for you...info Review Clinics (Tuesday) Disease Modifying Therapy Clinic (Wednesday) Mitoxantrone Clinic (Thursday) New Patient One-Stop clinic (Friday) All patients are initially seen at the New Patient One-Stop Clinic and thereafter follow-up will be continued at the MS Review Clinic. Patients are offered annual review appointments or more frequent dependent upon their condition. Patients may be discharged from MS Review, but can selfrefer back to the service at any time should the need arise. Inpatient, Pavilion 11 Telephone The inpatient ward is directly linked to the Rehabilitation Centre. The 19 beds are for assessment and rehabilitation of adults aged with a neurological illness or disability. Again the approach is multi-disciplinary, but the mainstay of care is delivered by a dedicated nursing team who provide a warm and friendly service appropriate to the client group. People with MS may be admitted to the ward for a number of reasons, including investigative diagnosis, an initial course of intravenous steroids, in-depth assessment and intensive therapies. 14 MIS CC Multiple Sclerosis service A5 leaflet.indd 14 29/3/11 10:17:23

15 you...information for you...information for you...information for you Visiting is from 2pm to 5pm and 6pm to 8pm each day. Relatives may be invited to visit outside these times to assist in, or to learn about, new aspects of care of their relative. Staff are available to discuss patient care at visiting hours where patient care needs allow. Patients and/or relatives can make an appointment to discuss care aspects with nursing staff, the ward manager or Consultant in Rehabilitation Medicine. Visitors need to be aware that you may be attending therapy sessions between 2pm and 4pm. These sessions are usually for half an hour or a full hour and you may attend multiple therapies. If you are to be admitted to the ward bring the following with you: Any medications you are taking. Your personal toiletries. Day time clothing suitable for participating in therapies for example, trousers and t-shirt. Night wear including slippers and dressing gown. (It is a mixed sex ward). Comfortable, well fitting shoes for use indoors. It is against the law to smoke inside. A smoke shelter is provided in the hospital grounds, but staff are not available to take patients to and from this shelter. 15 MIS CC Multiple Sclerosis service A5 leaflet.indd 15 29/3/11 10:17:23

16 ...Information for you...information for you...information for you...info Day-case Treatments Telephone Day-case treatments take place at the Montgomerie Suite within the Douglas Grant Rehabilitation Centre. Day-case treatment is only offered from Monday to Friday between the hours of 9.30am and 2pm. Continence Service Telephone Strong links exist between the Ayrshire and Arran MS Service and the continence team based at the Ballochmyle Suite of the Ayr Hospital. Clinics are held there and at Ayrshire Central and East Ayrshire Community Hospital. At least 40 per cent of people with MS can suffer from urinary or bowel problems and there is much that can be done to avoid, improve or manage this. Bladder and bowel problems can arise no matter your level of mobility or other abilities. Bladder and bowel management pathways for MS have been developed between the two teams and are used throughout Ayrshire. The first point of contact is your MS Specialist Nurse, who can give you appropriate advice, and start a management plan. They can also refer you to the Continence Service as can your General Practitioner or the Consultant in Rehab Medicine. 16 MIS CC Multiple Sclerosis service A5 leaflet.indd 16 29/3/11 10:17:24

17 you...information for you...information for you...information for you Sexual health and MS Telephone As with continence, sexual issues can affect people with MS. Sometimes this is due to nerve disruption causing a physical problem, but it is important to be aware that emotional and relationship difficulties can arise that also affect sexual ability or performance. You may wish to discuss these issues with your MS Specialist Nurse, Psychologist or Consultant in Rehab Medicine, who can refer you to a Nurse Specialist who specialises in the management of sexual problems or a Psychosexual Counsellor who specialises in female sexual dysfunction. What is MS? Multiple Sclerosis is a disease affecting the central nervous system (the brain and the nerves that run down inside your spine). Although it is these nerves that are damaged in MS, the effects are seen throughout the whole body, although organs such as your heart, lungs, liver and kidneys are not directly affected. MS is called an auto-immune disease (the immune system of your body fights bacteria, viruses and other invading organisms) where the system is making a mistake and attacking your own cells in this case around the surface of the nerves. 17 MIS CC Multiple Sclerosis service A5 leaflet.indd 17 29/3/11 10:17:24

18 MS is called an auto-immune disease (the immune system of your body fights bacteria, viruses and other invading organisms) where the system is making a mistake and attacking your own cells in this case around the surface of the...information for you...information for you...information for you...info nerves. Nerves in the central nervous system (CNS) are covered in white matter called myelin. This helps protect the nerves and increase the speed at which the brain sends and receives messages to and from the body. In MS attacks, the myelin is damaged in small patches and becomes inflamed (swollen). If this happens suddenly, you experience a flare-up of symptoms, or a relapse. The myelin damage may eventually repair itself as the immune attack switches off, it may be replaced with scar tissue or may never be replaced, and this can lead to more permanent symptoms or even disability. Nerves in the central nervous system (CNS) are covered in white matter called myelin. This helps protect the nerves and increase the speed at which the brain sends and receives messages to and from the body. In MS attacks, the myelin is damaged in small patches and becomes inflamed (swollen). If this happens suddenly, you experience a flare-up of symptoms, or a relapse. The myelin damage may eventually repair itself as the immune attack switches off, it may be replaced with scar tissue or may never be replaced, and this can lead to more permanent symptoms or even disability. Typical Myelin Damaged Myelin Typical Myelin Damaged Myelin 18 If the nerve under the myelin is also damaged or left exposed it may MIS CC Multiple Sclerosis service A5 leaflet.indd 18 29/3/11 10:17:24

19 you...information for you...information for you...information for you If the nerve under the myelin is also damaged or left exposed it may eventually disconnect and be irreparable. This type of damage accumulating over time can also lead to impairments, lasting symptoms, and increasing disability. Fortunately there are some treatments available now to manage symptoms, relapses and even rapidly progressing disability, if it has not gone too far. Are there different types of MS? The effects of MS are similar to all types. However there may be more or less inflammation involved, which presents in different patterns. The four common patterns seen are: Relapsing remitting Flare-ups are followed by near complete recovery. Secondary progressive Patients who start to accumulate some disability over time. Primary progressive There is little in the way of relapses, disability accumulates over time without improvements. This can take years or decades. 19 MIS CC Multiple Sclerosis service A5 leaflet.indd 19 29/3/11 10:17:24

20 ...Information for you...information for you...information for you...info Benign Little in the way of relapses or disability is seen over a ten year period from diagnosis. There are few predictors to what pattern may emerge at the time of diagnosis. What is a relapse? The flare up described on page 15 would be classed as a relapse if it involved a sudden onset, or rapidly developing an increase in new symptoms, or a recurrence of previous symptoms that had gone away. These would be neurological symptoms associated with MS and last continuously for 48 hours or more. The symptoms likely to be treated would be those directly affecting your essential daily activities or those causing pain. Infection can trigger MS symptoms, and high levels of stress and anxiety can also increase your experience of symptoms, therefore, it is important to rule these out as causes of a pseudo-relapse. You can be seen very quickly at the weekly Relapse Clinic at short notice and the most likely treatment offered would be steroids. Management and drug therapy in MS What do steroids do? When the myelin around your nerves becomes swollen there is a lot of inflammation. This can lead 20 MIS CC Multiple Sclerosis service A5 leaflet.indd 20 29/3/11 10:17:24

21 you...information for you...information for you...information for you to more symptoms than the MS lesion itself. Some steroids can cross from the blood to the brain and act as a very powerful anti-inflammatory. They get rid of the swelling, reducing symptoms, and speed up the recovery from the relapse. Please be aware they do not change the outcome of a relapse, and that after the swelling has reduced, the lesion of MS must still recover, this can take many weeks. Steroids do not alter the course of the disease and there is no guarantee that they work for everyone. How are steroids given? The most favoured way to give steroids is directly into a vein through a small plastic needle (cannula) once a day for an hour, over three days. If this is not convenient, some steroid tablets can be prescribed by your GP over five or 15 days. Importance of infection screening High dose steroid treatment has a side effect of reducing the effectiveness of the immune system temporarily. If you have an infection prior to starting steroid treatment this could make you very ill. Infection could also be the cause of your relapse symptoms. Infection screening will be carried out before any treatment is started (this will happen only if your results are clear). You should be aware that you are also more likely to pick up infections after steroid treatment. 21 MIS CC Multiple Sclerosis service A5 leaflet.indd 21 29/3/11 10:17:24

22 ...Information for you...information for you...information for you...info Side effects of steroids These commonly include: metallic taste during infusion; facial flushing; headaches; insomnia; swelling of ankles and hands; gastric irritation; and occasionally increase in blood sugar level, high blood pressure, increased appetite, gastric ulceration, euphoria, fluid retention or osteoporosis What is Disease Modifying Therapy (DMT)? Steroids do not have a modifying effect on MS lesions. There are now many treatments identified that change the course of the disease behaviour, some of which are currently available. Injectable DMTs There are two groups of DMTs that modify the immune system response in such a way that they reduce the number and severity of MS relapses, they may also have a modest effect on slowing disease progression. Interferon Beta and Glatiramer Acetate are given by injection and mainly given by the patient themselves. Available drug therapies: Beta Interferon This is part of the normal immune response and is what turns off inflammation. Giving yourself more 22 MIS CC Multiple Sclerosis service A5 leaflet.indd 22 29/3/11 10:17:24

23 you...information for you...information for you...information for you of this type of beta interferon (BI) reduces relapse activity by per cent and damage to the CNS. There are three types: Avonex - is injected once a week into a large muscle (usually the thigh). Rebif - is given three times per week just below the skin into the fatty tissue. Betaferon - is given every other day just below the skin into fatty tissue. Glatiramer Acetate This is a molecule similar to myelin proteins. It attaches onto cells of the immune system that cause MS damage, preventing this from happening to a degree. Relapses are reduced by 32 per cent and there may be some delay of progression. There is only one type - Copaxone a daily injection given just below the skin into fatty tissue. More details about these treatments and their side effects will be given if you are selected as suitable for treatment. Is DMT treatment suitable for me? There are strict UK guidelines that determine which drugs are beneficial for certain types of MS. The Association of British Neurologists guidelines state that they may be used for: 23 MIS CC Multiple Sclerosis service A5 leaflet.indd 23 29/3/11 10:17:24

24 ...Information for you...information for you...information for you...info Relapsing remitting MS where the person is over 18, can walk more than 100 metres without assistance, and has had two or more significant relapses (treated with steroids) in the past two years. Secondary Progressive MS Interferon treatments available if meet above criteria, but able to walk more than 10 metres with or without assistance. Treatment would be stopped due to side effects, lack of effect, or two disabling relapses with increased disability lasting longer than six months. Is there treatment for progressive disease or if DMTs don t work? Therapists and the rehabilitation team can provide a wide range of interventional or supportive treatments that can keep you healthy and well or improve your quality of life. A range of medications and equipment can help to manage your MS symptoms. If you have a rapid decline over a six-month period from being at some level of mobility or if you have frequent relapses despite trying different DMTs you may be suitable for treatment with an immunesuppressing agent such as Mitoxantrone or Tysabri. 24 MIS CC Multiple Sclerosis service A5 leaflet.indd 24 29/3/11 10:17:24

25 you...information for you...information for you...information for you Mitoxantrone This is a chemotherapy drug that can stabilise rapid progression of MS and dramatically cut down relapse rates. It has significant side effects, so is not used lightly. It is given by infusion into a vein (a drip) over one hour, once every three months for a twoyear period. It is not licensed for use in MS in the UK but may be used off-license by Specialist Consultants with knowledge and experience of its use. Tysabri This drug blocks immune cells from entering the brain. It also has significant side effects that limit its use. Tysabri is given by infusion into a vein over one hour, once every month. There is no time limit to its use as yet. It is licensed for people with Relapsing MS who have had two severe relapses of the disease and for those continuing to progress rapidly despite disease modifying injections. The Multiple Sclerosis Society - Ayrshire and Arran The MS Society is a national registered charity. The Ayrshire and Arran branch is the largest in the UK. They aim to help all people affected by MS to realise their goals and potential in life, whether they are members or not. A major objective is to help find a cure for MS. This work is achieved locally by fundraising to enable grants to be made available to 25 MIS CC Multiple Sclerosis service A5 leaflet.indd 25 29/3/11 10:17:24

26 ...Information for you...information for you...information for you...info individuals (including non-members), groups and research projects. Almost all money raised locally goes directly back into support of members and others with MS. As well as financing grants to help individuals or groups affected by MS they donate substantial amounts to MS research. The local branch organises regular support groups throughout Ayrshire, operates a resource centre in Kilwinning, and has an excellent team of support personnel with nursing backgrounds (some have MS themselves). There are also social evenings, luncheons, fund-raising days and, of course, branch meetings. MS Ayrshire and Arran Resource Centre 84 Main Street Kilwinning Ayrshire KA13 6AG Telephone: msayrshire@talktalk.net Website: The Multiple Sclerosis Society The Multiple Sclerosis (MS) Society is the UK s largest charity for people affected by Multiple Sclerosis. Around 100,000 people in the UK have MS, 10,500 in Scotland. 26 MIS CC Multiple Sclerosis service A5 leaflet.indd 26 29/3/11 10:17:24

27 you...information for you...information for you...information for you The MS Society depends on charitable fundraising and the support of the public and volunteers to be able to do the work they do. They are a membership organisation with a network of local branches across Scotland. Members are mainly affected by MS and social or healthcare professionals. They provide services to anyone affected by MS, not just members. The MS website ( contains a wealth of information ranging from help and advice on everyday living (diet, insurance, holidays and vaccination, exercise and physiotherapy) to employment, vehicles and mobility. This information is also available in printed format. The Multiple Sclerosis Trust The MS Trust is also a national registered charity. It is non-membership, relying solely on donations to enable its work. The Trust offers high quality information, resources and professional education in addition to funding practical research into MS. MS Trust website ( 27 MIS CC Multiple Sclerosis service A5 leaflet.indd 27 29/3/11 10:17:24

28 ...Information for you...information for you...information for you...info MS research and clinical trials Pharmalogical clinical trials and research have been an increasing feature of the Ayrshire and Arran MS Service over the past five to ten years and successful research programmes have been carried out in most departments. If you feel you would like to find out more about clinical trials or research in MS, then please indicate your interest with a member of staff from the MS Multidisciplinary Team. Multiple Sclerosis Managed Clinical Network Telephone: msmcn@aaaht.scot.nhs.uk Managed Clinical Networks are groups of health professionals and patient and carer representatives. Staff come from a range of services including local health centres, small and large hospitals and specialist units. They include GPs, consultants, nurses, allied health professions (for example physiotherapists and dietitians) health care managers, local authority and voluntary agencies. Patients, carers and members of the public are central to the work of the MCN. Managed Clinical Networks are set up to share information and ideas to improve services for patients. The most important people are you the patients, carers and members of the public. 28 MIS CC Multiple Sclerosis service A5 leaflet.indd 28 29/3/11 10:17:24

29 you...information for you...information for you...information for you Whether or not you decide to become involved in a formal capacity, we are always delighted to hear your comments and suggestions at any time. Please feel free to contact our network manager about any aspect of our service or indeed if you wish to become involved with the MS MCN. 29 MIS CC Multiple Sclerosis service A5 leaflet.indd 29 29/3/11 10:17:24

30 ...Information for you...information for you...information for you...info Name Telephone / / website Douglas Grant Rehab Unit msmcn@aaaht.scot.nhs.uk MS Specialist Nurses MS Clinics Dietitian Occupational Therapy Physiotherapy Speech and Language Therapy Psychology Pavilion Wheelchair Service Continence Service Sexual Health Social Work MS Society Ayrshire and Arran Scottish Driving Assessment MIS CC Multiple Sclerosis service A5 leaflet.indd 30 29/3/11 10:17:24

31 you...information for you...information for you...information for you Name Telephone / / website MS Society Scotland MS Society UK National MS Helpline am 9pm Mon-Fri MS Trust The MS Resource Centre MS Friendship Chat Site WESTMARC MS Society Publications Welfare Benefits Advisors Disability Employment Advisors /Jobcentre Plus Princes Royal Trust for Carers (freephone) 9am 4.30pm (North) (South) (East) (South) (East) (North) 31 MIS CC Multiple Sclerosis service A5 leaflet.indd 31 29/3/11 10:17:24

32 ...Information for you...information for you...information for you...info Multiple Sclerosis literature The MS Society and the MS Trust are two organisations who provide information and support for patients, carers and clinicians through their websites: or The information available covers a wide variety of topics. This information is available free of charge in the foyer at the Douglas Grant Rehabilitation Centre or by contacting the MS Society or MS Trust directly. You can read information on-line, download from the websites or request it be sent to your own home free of charge. MS Society publications MS Essentials For people living with MS: Managing Relapses Memory and Thinking MS and Insurance Tremor and MS Vision and MS Disease Modifying Drugs Managing Bladder Problems 32 MIS CC Multiple Sclerosis service A5 leaflet.indd 32 29/3/11 10:17:24

33 you...information for you...information for you...information for you Getting the Best from Social Work in Scotland Benefits and MS Mood, Depression and Emotions Diet and Nutrition Sex, Intimacy & Relationships Claiming Disability Living Allowance Fatigue Women s Issues Support for People Severely Affected by MS Pain and Sensory Symptoms Complementary and Alternative Medicine Muscle Spasms and Stiffness Finding and Funding Residential Care Exercise and Physiotherapy A Guide to Healthcare Services Speech Difficulties Swallowing Difficulties Managing the Bowel in MS Balance and MS Adaptations and Your Home Living with the Effects of MS 33 MIS CC Multiple Sclerosis service A5 leaflet.indd 33 29/3/11 10:17:24

34 ...Information for you...information for you...information for you...info Booklets: What is MS? - information on diagnosis, symptoms, treatment, management and sources of support. Working with MS Information for employees and employers Childhood MS A guide for parents Ricability Motoring with MS Research Matters Shrinking the Monster MS Carers The man s guide to caring for someone with MS Caring for Someone with MS: a handbook for family and friends What is Primary Progressive MS? What is Relapsing Remitting MS? What is Secondary Progressive MS? MS in Your Life a guide for young carers Our Dad Makes the Best Boats Mum Bakes the Best Cakes 34 MIS CC Multiple Sclerosis service A5 leaflet.indd 34 29/3/11 10:17:24

35 you...information for you...information for you...information for you DVD Annie and Dan talk about MS a DVD for children under 10 MS Trust Publications Factsheets: Bladder Problems Cannabis Campath Diet Pain Stem Cells Natalizumab (Tysabri) Mitoxantrone Low Dose Naltrexone (LDN) Talking About MS Bowel Problems Cognition Pregnancy and Parenthood Functional Electrical Stimulation (FES) 35 MIS CC Multiple Sclerosis service A5 leaflet.indd 35 29/3/11 10:17:24

36 ...Information for you...information for you...information for you...info Sativex Vitamin D Cladribine Depression Fingolimod Spasticity and Spasms Clinically Isolated Syndrome (CIS) Booklets The Young Person s Guide to MS Kid s Guide to MS Falls Managing the Ups and Downs Living with Fatigue Sexuality and MS A guide for women MS: What does it mean for me? Disease Modifying Drug Therapy What you need to know At Work with MS Managing Life and Work MS Explained Are you sitting comfortably? - A self-help guide to good posture in sitting. 36 MIS CC Multiple Sclerosis service A5 leaflet.indd 36 29/3/11 10:17:25

37 you...information for you...information for you...information for you MS and Me Exercises for People with MS Talking with your Kids about MS Tips for Living with MS CD/DVD MS Together A Film for people who have been diagnosed with MS, and those close to them. Acknowledgements The Ayrshire and Arran Multiple Sclerosis Multidisciplinary Team for their continued support and consideration in the development and production of this information booklet. Members of the MS Patient Advisory Group for their input with the production of this booklet. Date of Issue: September 2010 Review Date: September 2011 Authorising Person: Jacqueline K Downs 37 MIS CC Multiple Sclerosis service A5 leaflet.indd 37 29/3/11 10:17:25

38 ...Information for you...information for you...information for you...info Ayrshire and Arran MS Telephone Helpline There is a telephone helpline which you may use to contact any of the rehabilitation team members This is a telephone answer-machine service which is checked twice daily for messages Monday to Friday. Your call will be answered within two working days excluding weekends and public holidays. You will be requested to preface your message with your name and contact number to allow us to respond to your call. Please also state which department or individual your message is for, such as appointments, MS Nurse, Consultant, Physiotherapist and so on. Give us a brief account of the reason for your call as this allows us to have information to hand to answer your enquiry. DO NOT use this service if your call is urgent, instead contact us on MIS CC Multiple Sclerosis service A5 leaflet.indd 38 29/3/11 10:17:25

39 you...information for you...information for you...information for you Ayrshire and Arran MS Telephone Helpline There is a telephone helpline which you may use to contact any of the rehabilitation team members MIS CC Multiple Sclerosis service A5 leaflet.indd 39 29/3/11 10:17:25

40 All of our publications are available in different languages, larger print, braille (English only), audio tape or another format of your choice. Tha gach sgrìobhainn againn rim faotainn ann an diofar chànanan, clò nas motha, Braille (Beurla a-mhàin), teip claistinn no riochd eile a tha sibh airson a thaghadh Tell us what you think... If you would like to comment on any issues raised by this document, please complete this form and return it to: Communications Department, 28 Lister Street, Crosshouse Hospital, Crosshouse KA2 0BB. You can also us at: comms@aaaht.scot.nhs.uk or comms@aapct.scot.nhs.uk. If you provide your contact details, we will acknowledge your comments and pass them to the appropriate departments for a response. Name Address Comment Last reviewed: March 2011 Leaflet reference: MIS CC MIS CC Multiple Sclerosis service A5 leaflet.indd 40 29/3/11 10:17:26