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 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. Additional information is available from Action MS, 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.
Help is at hand – WHO’S WHO in the BACK-UP TEAM
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 Nurse
The MS Nurses are available to those who have been newly diagnosed as well as those who already have multiple sclerosis.
The MS nurses operate an open referral system which means you could be referred by yourself, neurologist, by staff on the hospital ward, by your GP or other healthcare professionals plus organisations such as Action MS and other voluntary agencies.
There are seven MS Nurses, seven based at the Royal Victoria Hospital, two at Altnagelvin Hospital, L’Derry and two at Craigavon Area Hospital. If you are diagnosed in 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? The 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 and how do I get in touch with them?
The MS Nurses can be contacted on the following telephone numbers. You may get an answer phone but leave a message and the Nurse will get back to you. Don’t forget to leave a contact telephone number.
Belfast Health & Social Care Trust 028 9063 2757
Royal Victoria Hospital
Glen Cartmill (Team Leader)
Western Health & Social Care Trust 028 7129 6132
Southern Health & Social Care Trust 028 3861 3863
Craigavon Area Hospital
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 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.
The physiotherapist can give pain relief therapy, emotional support and referral may be made to other professionals or agencies.
The Occupational Therapist
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 organising 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.
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.
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 Social Worker
The Social Worker is often called “the gate keeper”, a reference to their role of organising 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, short or long term respite care and ongoing social work support.
A social worker can provide information about benefits, suggesting which benefits you may be entitled to and helping you to fill in application forms, for example to claim DLA. If they are unable to answer any of your questions you will be referred to an agency such as the Citizens Advice Bureau (CAB).
There are a number of way to make contact with a social worker. These include referral by a hospital social worker, by your GP, by a family member, by a voluntary organisation or self-referral.
Normally you will arrange a visit with the social worker for an assessment of your needs. A carer’s assessment is also carried out.
The District 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.
The Community Psychiatric Nurse (CPN)
The Community Psychiatric Nurse (CPN) is a title which is often misunderstood because of the association of the word ‘psychiatric’ with mental ill health.
Someone who has MS may experience stress or even become depressed. Very often this accompanies the diagnosis and the fear of how life may change. What course will my illness take? Will I remain mobile? Will it affect my chances of employment or promotion or my status within the family?
CPN says: “The most important contribution to the patient’s well-being at a difficult time may be giving them time and reassurance, support and monitoring.”
The CPN is linked to the GP surgery and identifies people with mental health problems. Referral for an assessment is usually made by a GP, with the patient’s consent, or by other members of the community multi-disciplinary team. The CPN can provide: counselling, health education, mental health advice, recreation therapy, stress management, cognitive therapy, post natal advice and family support/therapy. A holistic approach is adopted to guide the patient through their illness. Counselling may be used in addition to anti-depressants and complementary therapies.
Remember Action MS is here for you. We would love to hear from you.
Free information booklets
If you would like more information please contact Action MS to request a set of free information booklets.