Frequently Asked Questions
Multiple Sclerosis is a medical condition that affects the nerves in the body. It is not a question of being “bad with your nerves”. During an MS attack the myelin sheath, which covers the nerve, becomes inflamed and this disrupts the messages passed along the motor and sensory nerves.
Motor nerves carry messages from the brain to make parts of the body work. Sensory nerves carry messages to the brain to give information. Consequently some parts of the body may not work as efficiently and sensitivities such as touch may be altered.
Not all nerves will be affected by MS. Some, such as the nerves affecting heart and lungs function will not be directly affected. These belong to the “autonomic system”. MS is individual, no two people will be exactly the same. There are different types of MS: benign, relapsing/remitting and progressive.
Who can help?
Professional staff in the Health and Personal Social Services offer a wide range of services. The GP can advise and refer patients to the appropriate specialist or agency. Community Care Teams are made up of professionals from various disciplines. In particular the Social Worker can be a useful contact in providing information about helpful agencies.
For people at home, a list of contact telephone numbers and information on where assistance is available is useful, before a relapse occurs or some other difficulty arises. If in hospital it is normal practice to be given the names and contact numbers of all those referred to, such as physiotherapist or occupational therapist, on discharge.
Voluntary organisations can provide various kinds of help from straightforward information to counselling and much more. These include Action MS, Crossroads and Carers Northern Ireland. There is a list of such organisations in the front section of the telephone book and additional information is available at the local library or advice-centre. It is not always possible for families to provide all the help that is needed and both the statutory and voluntary services offer practical assistance of a very high standard.
Professional Staff who can help
- MS Nurses
- Occupational Therapist
- Speech Therapist
- General Practitioner
- Social Worker
- Distric or Community Nurse
- Community Psychiatric Nurse
- Care Assistant & Auxiliary Nurse
- Home Help
The Neurologist is usually involved at the time of the diagnosis of MS. He evaluates the patient’s symptoms, examines him or her and organises tests like lumbar puncture or scans which should show confirmatory evidence of MS and exclude other conditions which might be confused with MS.
When the diagnosis had been made it is the duty and responsibility of the neurologist to communicate the diagnosis to the patient and provide information about the condition and likely outcome. Neurologists help the patient and their family to cope with the disease, by medical treatment of relapses, the treatment of troublesome symptoms, and helping the person to face up to the consequences of the disease
The MS Nurses operate an open referral system, which means you could be referred by your neurologist, by staff on the hospital ward, by your GP or other healthcare professionals plus organizations such as Action MS.
The MS nurses are available to those who have been newly diagnosed as well as those who already have MS. The MS Nurses are based at the Royal Victoria Hospital in Belfast, Altnagelvin Hospital in Derry and Craigavon Area Hospital.
If you are diagnosed in the hospital the nurses are available to go and talk to you on the ward, if that is appropriate.
If you have been diagnosed in an outlying clinic, the nurses rely on the consultants to pass this information on to them, at which time they will write or phone to introduce themselves and to make initial contact with you. The nurses can discuss specific issues with you such as who to tell, or whether to tell anyone at all and also what the future might hold. The nurses can give general advice and support as well as advice about symptom management and life adjustment.
- Exercise – Will exercise do me any harm / what sort of exercise can I do? (nurses recommend light exercise as it can help with fatigue)
- Relationships – How do I maintain my relationship with my husband / wife / child?
- Nutrition – what should I eat / what shouldn’t I eat?
- Organisations – What organisations are available / how do I get in touch with them?
Other roles include carrying out bladder scanning, to ensure that the bladder is functioning and emptying properly; dealing with the administration of intravenous Methylprednisolone and also the Betaferon and Copoxone treatments. If possible the nurses will try and organize treatment in your own locality, but this is not always possible. Beteferon & Copaxone, as well as Rebif and Avonex, can be prescribed in cases where people have been clinically diagnosed with relapsing-remitting MS. To be clinically diagnosed a person must have had two attacks in a two year period.
The MS Nurses can help with the practicalities of these treatments, especially for people just starting the treatment, and help work through any side effects that are experienced. There are several trials ongoing in the Royal Victoria Hospital in which the MS Nurses are involved:
- ‘Promise’ – looking at the effectiveness of Copaxone in people with primary-progressive MS.
- ‘Cams’ – cannabis trial for people with bad spasticity and pain.
- ‘Flair’ – a quality of life study with Avonex.
The MS Nurses can refer you to other healthcare professionals within the multidisciplinary team, if appropriate. Examples would be a physiotherapist, occupational therapist, social worker or continence advisor.
The Nurse will contact them on your behalf, either by telephone or in writing, and hopefully put you in touch with someone in your particular area. Referral to a physiotherapist has to be done by a consultant, who normally accepts the Nurse’s recommendation. The MS Nurses will also put you in touch with outside agencies, if appropriate.
MS specific charities such as Action MS, The MS Society and the MS Trust all provide a range of services. The MS Nurses find Action MS’ information leaflets particularly useful, especially for those who have been newly diagnosed.
Also, organizations such as the Citizen’s Advice Bureau and Relate can be very useful.
The MS Nurses can be contacted on: 028 9063 2757 If the nurses are unavailable a message can be left on voicemail.
- MONDAY – THURSDAY 9:30AM – 4:30PM
- FRIDAY 9:30AM – 3:00PM
AN MS NURSE WILL BE AVAILABLE TO ANSWER YOUR CALL AT THE ABOVE TIMES CLOSED 12:30PM – 2:00PM DAILY CLOSED SATURDAY, SUNDAY, BANK AND PUBLIC HOLIDAYS
If you live in the Western Health and Social Care Trust Area you can contact Fiona Mullan or Carole Hinchcliff based at Altnagelvin hospital on 028 712 961 32
If you live in the Southern Health and Social Care Trust Area you can contact Heidi Thompson or Jill Patton based at Craigavon Area Hospital on 028 38 613 863
If you live in the South Eastern Health and Social Care Trust Area you can contact Iris Hume or Julie Knox based at the Ulster Hospital Dundonald on 028 90 632 757
If you live in the Belfast Health and Social Care Trust Area you can contact the following MS Specialist Nurses based at RVH on 028 906 327 57
Glen Cartmill (Team Leader)
The Physiotherapist is often a member of a hospital or community care team. There are three main aspects to this profession.
- Assessing physical capabilities
- Planning appropriate therapy with the person
- Helping people make the most of their physical capabilities.
Therapy may include exercise programmes and physical education. The aim is to help people adjust to changes in their physical condition and arrangements may also be made for the provision of aids and other equipment to ensure maximum independence and comfort.
In general the physiotherapist will work with patients to help them keep fit and maintain good reflexes as well as develop skills in the use of any equipment that may be appropriate.
If you would like to see a physiotherapist a referral can be arranged through your own GP.
The Occupational Therapist works as a member of the hospital or community care team. In coming to terms with changes in lifestyle the occupational therapist offers an invaluable service in helping people to manage day by day in areas often taken for granted such as dressing, personal hygiene, cooking safely, pursuing hobbies and other interests.
The professional is also expert in organizing specific aids, equipment and, with other agencies, adaptations in the home to ensure maximum independence when for example mobility or eyesight is reduced. In helping people to live with multiple sclerosis, particularly in the home setting, the occupational therapist takes account of individual needs and also those of the family. If you would like to see an occupational therapist a referral can be arranged through your own GP
The Speech Therapist works with people who develop difficulties in communicating. This may require speech retraining in a way that is suitable to each individual. Referral to other professionals may be necessary to ensure the most appropriate kind of help. It is also possible to try various methods and techniques until the right one is found to suit an individual’s needs. The speech therapist may also help with swallowing problems. Referral can be arranged through your own GP.
The counsellor is a listener. This service of listening is an important one in helping people handle the emotional and stressful impact of multiple sclerosis. The good listener offers empathy and understanding that goes far beyond any technical skill. In such company people are able to express their true feelings, concerns and dilemmas in a confident and meaningful way. As often not the burden of multiple sclerosis is truly shared and together the challenge of living with MS may be met with options recognized, decisions taken and something finally understood.
The Dietician is an expert in advising on the diet which best suits an individual’s lifestyle. This aim is to assist people to find a balanced diet that meets both needs and preferences. In considering a major change in dietary habits, it is advisable to ask the dietician for advice.
The General Practitioner is a key member in the care team and is usually the first to be asked about symptoms and medication and thereafter any subsequent treatment. Referrals may be made to specialists such as community nurses, social workers and neurologists. Medical evidence may be provided to help with applications for benefits, home adaptations, equipment, insurance, driving licenses and other requirements.
At health centres and doctors’ practices various leaflets are available on a range of health and personal social services. These are useful and should be kept for easy reference along with surgery times and times when doctors are available to receive telephone calls.
The Social Worker is often called “the gate keeper”, a reference to their role of organizing services across a wide span of social care. These services may include help in the home, child care in the home, provision of aids, adaptations in the home, specialist counselling, the use of facilities such as day centres and short or long term respite care. In managing personal finance the social worker may advise on social security benefits and referral to the appropriate agency.
Distric or Community Nurse
The District or Community Nurse is a registered nurse who may have additional qualifications and usually works as a member of a community care team based in a health centre or doctor’s practice. The nurse plans nursing care in the home which may involve assistance with personal hygiene, dressings, management of medication, care of pressure sores and advice on other aspects of care and support for those living with MS. Referral may be made to other agencies and services to help the individual and the family.
Community Psychiatric Nurse
The Community Psychiatric Nurse is a title which is often misunderstood because of the association of the word ‘psychiatric’ with mental ill health. Nevertheless the nurse is able to help people with MS who may for example have short-term memory loss or more commonly depression. This will involve counselling and possibly medication. Depression, like any other illness, affects quality of life for all those living with MS. The nurse may be able to help in times of stress and emotional upheaval.
Care Assistant & Auxiliary Nurse
The Care Assistant and Auxiliary Nurse are trained in a range of duties that include assisting with toileting, personal hygiene, dressing, feeding. As member of the hospital and community care teams they are not trained to registered nurse standards but may carry out a variety of care tasks either alone or under supervision.
The Home Help is trained to provide a comprehensive service in the home that includes cleaning, cooking, fire lighting and shopping. The social services usually organize this kind of help. Remember there is help at hand in the community.