You have received a diagnosis of MND, and need to know where to go for help. If your everyday living is affected by the MND you need to have a social care assessment.
Your hospital may refer you on to all relevant services and it is worth asking if they will do so. Your GP will also be able to refer you and you can also contact the Social Services or Adult Care Department direct.
If you have previously received an assessment by any of these services, you will still need to contact them with details of your diagnosis. MND is a progressive illness and your needs may change.
Below is a list of the services which you may need but please be aware that you will not necessarily need all of them immediately and may never need them all.
You are entitled to a community care assessment to identify any personal care needs. The level of care and support will be determined by the assessment. There will be a means test to see if any financial contribution will be required. Your carer is entitled to a carer's assessment to ensure all aspects of support have been considered - see our section for Carers.
Health and social care professionals
You can expect to meet a wide variety of health and social care professionals if you have been diagnosed with MND. These are often referred to as a multidisciplinary team or MDT. Amongst others, these professionals are likely to include:
Your GP can provide support and information prior to diagnosis and throughout the course of the disease. He/she is able to prescribe treatment for the control of symptoms and can refer to an appropriate specialist, other consultants and members of the multi-disciplinary team.
Usually a neurologist, who will provide assessment, diagnosis and symptom management. Depending on your symptoms you may be referred to other consultants, such as a consultant in respiratory medicine or palliative care consultant.
Occupational Therapist (OT)
Occupational Therapists have differing roles and may be employed by the NHS, local authority or hospice. The NHS Occupational Therapist can advise about everyday activities as well as moving and handling. An Occupational Therapist from the local NHS wheelchair service will advise about wheelchair provision. The Occupational Therapist from the local authority can advise you about adaptations to your property and larger equipment you may require.’
The OT usually works very closely with the physiotherapist.
The physiotherapist can offer a range of interventions including, advice regarding mobility, falls prevention, positioning and specialist equipment and respiratory support They often work very closely with the OT.
District Nurses/Community Nurses
The district nurse can offer help with nursing care and equipment provision and is contacted through your GP surgery.
Specialist Neurology Nurses
A specialist nurse is usually linked to a neurological clinic or MND Care Centre and can give specific advice and support related to neurological conditions.
Speech and Language Therapist (SaLT)
Can give advice on communication aids if speech becomes a problem. They work closely with the dietitian, offers advice regarding compensating for swallowing difficulties and recommends safe consistencies of diet and fluids, if the throat muscles make eating and drinking a problem.
In consultation with the speech and language therapist the dietitian can advise on a diet which will help to maximise energy levels and reduce weight loss.
For advice on the best type of medication for symptom control, for example, many medicines can be dispensed in liquid form for ease of swallowing.
Specialist Palliative Care
Specialist palliative care services include consultants in palliative medicine; specialist community nurses [CNSs], hospices and hospice teams and provide symptom management, support, information and counselling, to assist the person living with the disease and their carers and family from the point of diagnosis. The aim being to maintain the best possible quality of life.
Counselling and Psychology Services
For emotional and psychological support. Your GP can refer you to an appropriate service, but there may be a waiting list. Your local hospice may offer this as part of the range of services they provide.
Social Worker/Care Manager
You may have access to a social worker or a care manager either from Adult Social Care or your local hospice, who will be able to offer advice regarding a range of services including financial support, help for carers and children and, if needed bereavement support.