Motor neuron disease Care at the royal free

Motor neuron disease
Care at the royal free
This information is designed for people who have been diagnosed with motor neuron
disease (MND) and who are under the care of a neurology consultant at the Royal
Free London NHS Foundation Trust.

What is motor neuron disease (MND)?
Motor Neuron Disease is a term that describes a number of related conditions that
affect the motor nerves of the brain and spinal cord. It is also sometimes referred to
as amyotrophic lateral sclerosis. Motor nerves (also called motor neurons) send
signals to tell the muscles of the body what to do. When these motor nerves are
damaged, the muscles become weaker. Usually, the muscles affected first are those
in the hands, feet, mouth and throat, but this depends on the type of MND. MND
does not usually affect the senses (sight, smell, taste, touch and hearing). It is a
progressive condition, but the rate of progression varies from person to person.

How is a diagnosis made?
There is no single test for MND and it can be difficult to diagnose, which is why you
were referred to a consultant neurologist at the Royal Free Hospital. Other conditions
can start with similar symptoms and it is important to rule these out before the
consultant can make a diagnosis. You are likely to have had a number of tests –
these might have included blood tests, lumbar puncture, electromyography (EMG),
muscle biopsy or brain scan, which helped the consultant to make a diagnosis of
MND. You may have received the diagnosis at a clinic or as an in-patient on the
ward.

Where can I find out more?
The MND Association can provide a lot more information for you and your family,
friends or carers. Their website address is www.mndassociation.org

24-hour telephone assistance is available from the MND Association’s MND
connect service - this offers a fast route to practical and emotional support and
advice. Their telephone number is: 08457 626262.

There are also regional care development advisers (RCDAs) working for the MND
Association, who can offer support and advice and also put you in touch with local
branches of volunteers:
          • North and West London RCDA: tel. 0845 3751 826

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•   Hertfordshire and Essex RCDA: tel. 0845 375 1840

              What happens next?

MND service support

The Royal Free MND service is part of the Royal Free neuromuscular centre and
provides support for patients throughout the area covered by the Royal Free. Dr
Richard Orrell is the lead neurologist for the service.

There are potentially many teams and individuals involved in the management and
support of patients with MND and more details are given below. A neuro-
rehabilitation lead nurse is available to provide support for MND service coordination
and can signpost you to the appropriate team or individual if you are in doubt.

Neurology clinics. While you were having tests and investigations, you will
probably have been attending a general neurology clinic, or you may have been told
about your diagnosis during a stay on the neurology ward at the Royal Free Hospital.
Following your diagnosis with MND you will continue to be offered clinic
appointments at the Royal Free Hospital or your local hospital.

You will also have the opportunity to see other members of the multi-professional
MND team either at the Royal Free Hospital site (as an in-patient or out-patient) or
nearer to - or within - your own home. If you live a long way from the Royal Free
Hospital, you might prefer to be followed up and supported nearer to your home. You
can discuss this with your neurologist or GP, who can put you in touch with local
services (see also page 5 of this leaflet).

The following services are available to you at the Royal Free Hospital or in
your local community

Speech and language therapy. The speech and language therapist (SLT) will
assess and discuss communication and swallowing abilities with you. The aim of
speech and language therapy is to maximise communication using a variety of
methods including speech, writing and communication devices. The role of the SLT
is also to ensure that swallowing is safe - that is, not causing you to choke or get
food or fluids into the lungs. Safe swallowing techniques and strategies can be
taught and in liaison with dietetics, appropriate consistencies of food and fluids are
recommended.

Dietetics.     The dietitian will talk with you about your current eating pattern and
whether you have had any unintentional weight loss recently. People with MND can
be at risk of losing weight, for example because of difficulties with swallowing. If you
are having difficulties with eating and drinking, the dietitian will work with you to help
improve your intake, in liaison with SLT. Planning for future alternative ways of
getting sufficient nutrition and fluid may also be discussed.

Physiotherapy.    Physiotherapists aim to maximise your mobility and
independence through provision of support, training and equipment for you and your

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family or carers. They are able to offer you advice on exercise programmes to
prevent muscle shortening, joint stiffness and associated pain. They can assess your
need for devices to help maintain mobility, including walking aids, splints and
orthotics and can refer you to your local wheelchair services as appropriate.
Physiotherapists offer training for your carers regarding handling techniques to help
you move safely. The role of the physiotherapist also includes advice on breathing
exercises and techniques to help clear secretions from your chest if necessary.

Occupational therapy. Occupational therapists (OTs) aim to enable you to retain
as much independence with everyday activities as possible. This may be by helping
you to find new ways of doing things, or providing equipment or adaptations to your
home. OTs also consider the needs of your family and carers. If necessary the
hospital OT will refer you onto community OTs in your home area after initial
assessment.

Respiratory services.      As part of your care, you may have lung function tests to
assess your breathing, as this may also be affected by MND. Where your symptoms
indicate that there is respiratory muscle involvement, we may try the use of a
breathing machine called non-invasive ventilation (NIV). The best time for using the
machine is at night during sleep. If its use is found to be helping your symptoms, you
may be taught how to use a machine that you will then take home with you for
longer-term use.

Neuropsychology services.          If you are experiencing difficulties with memory,
concentration and other thinking skills, you may be referred by your consultant for a
neuropsychological assessment. This may take place at the Royal Free Hospital or
in your local area. You will be asked to complete a series of tests over a few hours,
to find out in detail about the problems you are experiencing and what might be
causing them. The clinical neuropsychologist will discuss these problems and any
useful support strategies with you.

Many people experience mood changes due to their symptoms or after their
diagnosis. You can speak to the neuropsychologist about this during your in-patient
stay. If you are finding it difficult to cope at home, your GP can refer you for support
in the community. Support may come from your local mental health team, or from a
specialist community service, and will usually take the form of counselling or
psychological therapy.

Palliative care services. Palliative care services aim to maximise your health and
wellbeing through the management of symptoms. They support you and your family
and carers with managing the physical, emotional and psychological needs that you
may experience as a result of your illness. Palliative care teams can provide
assessments in hospital or a community team can assess you at home. Support,
respite and symptom control may also be provided through your local hospice
services. Palliative care teams can also support you to plan for the future. The Royal
Free palliative care team can provide further advice about services local to you or
discuss a referral with your GP or your neurologist.

There are a number of local hospices in the region. The Marie Curie Hospice,
Hampstead, is the closest to the Royal Free. It is a specialist resource that can be

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used if you have complex rehabilitation needs or problems managing your
symptoms. It has a large out-patient and day therapy facility. This unit has expertise
in managing patients with complex, progressive illness. The care is delivered by a
multi-disciplinary team of experts who work collaboratively with the services at the
Royal Free. The day therapy unit is backed up by a 34-bedded specialist palliative
care in-patient unit. Similar facilities are available at your local hospice.

Research

We are active in research into the causes and treatment of MND. This includes basic
research and clinical trials. The Royal Free Hospital is a member of UCLPartners, a
collaboration between five of Britain's world-renowned medical research centres and
hospitals. UCLPartners is Europe's largest academic health science partnership. We
would be pleased to discuss research into MND, and opportunities to participate. If
you are interested in further details of research related to MND, please contact Dr
Richard Orrell, senior lecturer and consultant neurologist on 020 7830 2387.

Further information and contacts

Please call Dave Thomas, MND service support (07749 237380 / 020 8951 2168), or
the Royal Free Hospital’s neurosciences department (020 7830 2387) during office
hours if you have any general enquiries about our service or would like to know more
about how we can help to support you.

Royal Free Hospital multidisciplinary team contacts:

MND Service Support: 07749 237380

Speech and language therapy: 020 7794 0500 x 33632

Dietitian: 020 7794 0500 x 33709

Physiotherapy: 020 7794 0500 x 34055

Occupational therapy: 020 7794 0500 x 34057

Palliative care service: 020 7830 2905 / 020 7794 0500 x 33861

Respiratory service: 020 7794 0500 x 34068

Neuropsychology service: 020 7794 0500 x 34710

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Local community therapy teams

NHS Barnet:
Community neurological conditions management team (CNCMT)
Based at the Neurological Rehabilitation Centre, Edgware Community Hospital,
Edgware, Middlesex HA8 0AD
Tel: 020 8951 2150

NHS Camden:
Camden REACH
Based at St. Pancras Hospital, 2nd floor, 4 St. Pancras Way, London NW1 0PE
Tel: 0845 900 0684

NHS Hertfordshire:
Hertfordshire neurological service
Based at Jacketts Field Rehabilitation Unit, Jacketts Field, Abbots Langley WD5 0PA
Tel: 01923 299 123

NHS Bedfordshire:
Rehabilitation and enablement team
Based at John Bunyan House, Bedfordshire Health Village, Kimbolton Road and
Bedford and Disability Resource Centre, Dunstable and Biggleswade Hospital,
Potton Road, Biggleswade
Tel: 0845 602 4064

If you would like a large print or audio version of this
information, please ask a member of staff.

© Neuroscience department / Patient information programme 2010
[review date: May 2013]
www.royalfree.nhs.uk

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