Information For People Newly Diagnosed With Motor Neurone Disease

  • Reference Number: HEY-203/2016
  • Departments: Neurology

Introduction

You may have concerns and questions about Motor Neurone Disease and its implications for you and your family.  This leaflet is provided to complement the information you have already been given by your Neurologist and to indicate what to expect by way of services from this point forward.  As each person’s journey with Motor Neurone Disease is different, so too is the care and management that they may require.  A support network of local Health and Social Care Professionals exists to help you on your journey.

What is Motor Neurone Disease?

The name ‘Motor Neurone Disease’ is an umbrella term for a family of diseases all caused by damage to motor neurones.  Motor neurones are a special group of large cells that are located in certain parts of the brain (the motor cortex and the brain stem).  They act as a link between the nervous system and the muscles and are very important in the control and movement of muscles.  In Motor Neurone Disease these cells become damaged and this results in weakness and wasting of muscles with which they are linked.

For more detailed information about the disease itself, you can refer to the Motor Neurone Disease Association publication “Living with Motor Neurone Disease”.  This can be accessed by the website: www.mndassociation.org, by contacting the helpline (MND Connect, tel: 03457 626262), or it may be offered to you by the Neurology Specialist Support Nurse.

What will happen?

Following confirmation of the diagnosis by the Consultant Neurologist you will be referred to the Motor Neurone Disease Clinic.  You will be invited to attend this clinic on approximately a two to three monthly basis, dependent upon your clinical and monitoring needs.  Your first appointment in this clinic should be secured within a few weeks following confirmation of your diagnosis.  If you experience any problems in securing this appointment please contact the Neurology Specialist Support Nurse on telephone number (01482) 674208.

At each clinic attendance you will be weighed and your blood, cardiac, respiratory function and physical abilities will be monitored.  You will also be given the opportunity to discuss any areas of concern regarding your health status, with particular attention being paid to managing any symptoms you may be experiencing.  Following each clinic attendance, your General Practitioner will receive a letter detailing your medical assessment and outlining your management plan.

As some people can experience mobility problems, the use of the service lift (through the main lift lobby and to the rear of the hospital) would be advisable when attending the outpatient department for your clinic appointment.

Professional Support Network

As part of your management plan you may also be referred to the healthcare professionals detailed below:

  • Occupational Therapist: for maintaining independence at home and work by advising on and providing, equipment and adaptations to assist with everyday activities.
  • Physiotherapist: for advice and provision of equipment with regard to safe mobility, walking aids and safe handling. Also for the teaching of relaxation and breathing techniques and provision of associated equipment.
  • Speech and Language Therapist: for optimising speech intelligibility and providing aids to communication, as well as advice on safe eating/drinking and liaison with the dietician.
  • Dietician: for monitoring nutritional status and optimising oral intake, and liaison with Speech and Language Therapist on safe eating and drinking techniques and texture modification.
  • Clinical Engineer: for assessment for environmental controls eg remote control door opening systems, single switch access to operate TV, lights etc.
  • Wheelchair Services: for provision of an appropriate wheelchair.

Dependent upon need, your Professional Support Network may also include:

Consultant gastroenterologist, consultant chest physician, respiratory nurse, continence advisor, clinical psychologist, hospice doctors, nurses and therapists, social services assessment officer and care co-ordinator, social worker and others too numerous to list in total.

If you live in Hull and East Yorkshire

The Neurology Specialist Support Nurse and the Dove House Hospice Motor Neurone Disease Support Nurse are in attendance at the Clinic and can provide emotional and practical support, advice on symptom management and are also the point of contact for additional services following diagnosis.    The Neurology Specialist Support Nurse can be contacted on telephone number (01482) 674208 and the Dove House Hospice Motor Neurone Disease Support Nurse can be contacted on telephone number (01482) 784343 ext 328.

If you live in North or North East Lincolnshire

A referral to the Rehabilitation Medicine Team in Brigg can be made to access any health and social care services that may be required.  They can be contacted on telephone number (01724) 290062.

Local Support Network

  • The Motor Neurone Disease Association forms the basis of this network via the role of the Regional Care and Development Advisor.  This is a professional person through whom you and/or your family can access information and support in a variety of ways and who can liaise with other professionals and organisations involved in your care.  To determine who your local contact is please call the Motor Neurone Disease Association helpline number (03457) 626262.
  • There is also a Hull and East Yorkshire Motor Neurone Disease Support Group which meets in the Hull locality on a monthly basis.
  • Motor Neurone Disease Patient and Carer Involvement Group meets four times a year.  By communicating with healthcare providers the Involvement Group is leading the way in instigating improvements to local care services for people with Motor Neurone Disease and their carers, both now and in the future.

For further information about these meetings please contact the Motor Neurone Disease Association Regional Care and Development Advisor or the Neurology Specialist Support Nurse.

Please also contact your area Regional Care and Development Advisor, detailed above, if you wish to access personal support for you and your family from a trained Motor Neurone Disease Association Visitor.

Other Useful Contacts

Hull Royal Infirmary, Medical Outpatient Department

 For clinic appointments and cancellations please telephone (01482) 674853.  Please quote your NHS Number, if known, when contacting this department.

 For Benefits Advice please go to www.gov.uk/benefitsadvisor

Should you require further advice on the issues contained in this leaflet, please do not hesitate to contact the Neurology Specialist Support Nurse, Neurology Department on tel no: (01482) 674208

General Advice and Consent

Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.

Consent to treatment

Before any doctor, nurse or therapist examines or treats you, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to you. You should always ask them more questions if you do not understand or if you want more information.

The information you receive should be about your condition, the alternatives available to you, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:

  • you must be able to give your consent
  • you must be given enough information to enable you to make a decision
  • you must be acting under your own free will and not under the strong influence of another person

Information about you

We collect and use your information to provide you with care and treatment. As part of your care, information about you will be shared between members of a healthcare team, some of whom you may not meet. Your information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.

We may pass on relevant information to other health organisations that provide you with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your doctor, or the person caring for you.

Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about you. For further information visit the following page: Confidential Information about You.

If you or your carer needs information about your health and wellbeing and about your care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.