Local Services

Medical, social and other services for people with MND in Leicester, Leicestershire and Rutland are provided by a number of local agencies eg. NHS, County and District Councils, LOROS. Following diagnosis, most MND patients in our area are referred to the Leicester, Leicestershire and Rutland MND multidisciplinary team clinic based at LOROS which provides ongoing clinical support for patients.

The LOROS Motor Neurone Disease Multi-Disciplinary Team Clinic

The award winning MND team based at LOROS operates a unique model of care which was developed in partnership with the MND Association. It aims to deliver a fully co-ordinated approach to the support of local MND patients and their families and holds a specialist clinic at LOROS twice a month on a Tuesday. Members of the team can also make home visits and are available by phone.

This service is co-ordinated by the MND Specialist Nurses who act as key workers and support patients and carers from diagnosis to end of life. The team includes specialist doctors, nurses, dietitians, therapists, counsellors and social workers as well as volunteers from the MNDA Leicestershire and Rutland Branch. Their aim is to support individual patients and their family and carers by monitoring their needs and addressing the issues that are important to them. This will include, for example, reviewing medication, providing practical advice on managing symptoms and co-ordinating the provision of equipment.

The multi-disciplinary MND team meets fortnightly at LOROS to discuss the needs of patients. This is followed by the MND clinic where patients can see the specialist nurse, a consultant in palliative care and other therapists as appropriate, enabling patients to be seen in one place, saving travel time as well as providing support and a ‘one stop’ appointment for patients. The local MNDA branch is also involved as specially trained Association Visitors take part in the MDT discussion and are on hand to welcome patients and carers to the clinic and to offer support if needed.

MND Patient Support Group

This is a patient-led support group that runs alongside the clinic at LOROS once a month. The members also arrange social events and keep in touch via Facebook at MND SupportGroup(LOROS)

Contacts

MND Multi-disciplinary team:-

  • MND clinical nurse specialists 07921 545557 (answer machine)
  • Office Telephone (0116) 231 8402 (Mon – Fri 9am – 5pm) The administration team in the office will take messages if the MND clinical nurse specialists are not available.
  • LOROS switchboard (0116) 231 3771 (at all other times) This number can also be used to contact the palliative care consultants, occupational therapists and physiotherapists.

SUPPORT FROM THE LEICESTERSHIRE AND RUTLAND BRANCH

Support and Social Meetings

The branch holds regular meetings and other events so that people living with MND, their carers, family and friends can come together in a friendly, informal environment to socialise, chat and share experiences. These events are held at various venues around our area.

Family members and friends are also affected when someone close has been diagnosed with MND. We know they are dealing with a very difficult diagnosis so we want to help carers and others close to them cope with the situation. The Branch holds special events for carers, offering not only advice and support but also the opportunity to meet other people in the same situation who will understand the difficulties of caring for someone living with MND.

For up-to-date information about all branch meetings, please see the Events page.

Association Visitors (AV’s)

Our Branch Association Visitors are specially trained volunteers who offer caring, informed support to people with MND and their families. They work as part of a local team visiting people with MND and their carers at home or keeping in touch by telephone or email. They aim to help people living with MND by advising them about the support and services provided by the MND Association and by signposting them to other appropriate sources of help. They also support the work of the MND multi-disciplinary clinic based at LOROS.

Our team of Association Visitors

  • make and maintain contact by telephone, email or face-to-face with people living with MND
  • explain the support and services available from the MND Association and other local services and organisations
  • enable people with MND to identify problems as they arise and explore how these might be managed
  • liaise with Health and Social Care Professionals.
  • can assist in the provision of specialist equipment and financial support where necessary.
  • offer a warm welcome and give support to those attending the MND clinics at LOROS.

If you would welcome telephone contact or a visit from one of our team of volunteer visitors, do get in touch directly with our AV coordinator, Jenny Holmes-Shuttlewood or speak to one of the MND team at LOROS.

Our AVs are supported in their work by our local Area Support Co-ordinator (ASC). ASCs work closely with local branches and local Health and Social Care Professionals to ensure that people affected by MND in their area are supported in accordance with their needs. To get in touch with your local ASC local please contact MND Connect.

SERVICES PROVIDED BY THE MND ASSOCIATION

MND Connect is the Association’s helpline which is available Monday- Friday from 9am-5pm and 7pm-10:30pm. It provides advice on all aspects of MND and information about the work of the Association and the support available. Whether you’re a patient, carer, friend, clinician, supporter or potential fundraiser, just call 0808 8026262 (charged at local rate) or email mndconnect@mndassociation.org

MNDA Support Grants

The Association has a range of grants available to people living with MND, their carers and dependent children. They are intended to contribute towards the cost of items and services not available from statutory services eg. stairlifts, riser/recliner chairs, house adaptations or to provide support for the carer or family of a person living with MND. Some of these grants require a referral from the relevant health or social care professional. For more information contact our branch AV Co-ordinator or the MND Nurses at LOROS. ( see Contacts)

Welfare Benefits – Information and Advice

The MND Association offers a benefits advice service especially for people living with MND and their unpaid carer. More information can be found on the MND Association website at www.mndassociation.org .

OTHER LOCAL SOURCES OF SUPPORT, INFORMATION AND ADVICE

This is a Day hospice situated in Stathern offering day respite care for those living in the Melton/Nottingham area. Referrals can be made via the MND Specialist Nurse, GP or District Nurse. Tel. 01949 860 303
www.dovecottage.org

WHEELCHAIR SERVICES

Opcare provides Prosthetic, Orthotic, and Posture and Mobility services to residents of Leicester City, Leicestershire and Rutland from the Leicester Specialist Mobility Centre.

www.opcare.co.uk

Support, information and advice for unpaid carers is available locally from the Carers Centre.

Contact their helpline on
0116 2510999 or email

enquiries@thecarerscentre.org.uk

THE TREBLE ONE TRUST is a local charity which aims to help fund specialist equipment and aids for people living with MND in our area. For more information contact The Treble One Trust at www.trebleonetrust.org .

USEFUL LINKS