The MND Association

The Motor Neurone Disease Association is dedicated to working on behalf of people with MND. It provides care and support to people with MND, enabling them to live their lives to the full. This includes loaning essential equipment, training Association Visitors and running a national Helpline.

The Association promotes scientific research, and provides funding to specialists seeking to understand, find treatments and ultimately cure the disease. Research is expanding and many key projects are supported in the UK and elsewhere.

The Association speaks on behalf of people with MND, campaigning locally, nationally and internationally, and demanding the best possible standards of care for all. A number of Care Centres have been established to provide essential co-ordinated care services.

Helpline

Telephone: 08457 626262. The Association's Helpline offers information and support to people affected by the disease. It is available Monday to Friday 9.00am-5.00pm and 7.00pm-10.30pm, and on Saturday and Sunday 10.00am-6.00pm. Calls are charged at local rates from anywhere in the UK.

Contact Information

Motor Neurone Disease Association
PO Box 246
Northampton NN1 2PR
Tel: 01604 250505
Fax: 01604 638289/624726.
Email: enquiries@mndassociation.org
Website: www.mndassociation.org

Branch Support

The Oxfordshire Branch provides help and support to those people affected by Motor Neurone Disease in the area through two main groups.

Association Visitors

There are currently six trained Association Visitors in Oxfordshire, all of whom are volunteers. Most have direct experience of caring for a friend or relative with MND and are aware of the practical, financial, and emotional issues, the implications of living with the disease and the problems this can bring.

The Association Visitors Group covers the whole of Oxfordshire and nearby counties where no visitor is available. Visitors can come to your home, maintain a link by telephone or e-mail, or all three - whichever suits your needs.

The Group meets regularly to keep up to date with events, and usually the Regional Care Development Adviser (RCDA) attends these meetings. The Group also has direct contact with the Oxfordshire MND Care Centre.

We urgently need more volunteers to become Association Visitors. For further details please contact our Association Visitors Group Co-ordinator via our Branch Secretary.

Family and Friends Group

A support group known as the Family and Friends Group meets regularly, usually at the Holiday Inn, Peartree Roundabout, Oxford. People with MND, their family, friends and carers find a warm welcome at the meetings which include a short talk on subjects of interest. There is always plenty of time to share experiences and socialise over a cup of tea.

Association Visitors, the Regional Adviser from the National Association, committee members of the Oxfordshire Branch, staff from the Motor Neurone Disease Care Centre in Oxford, and other local health specialists often attend and there is time to talk privately about concerns.

For further details, please contact our Family and Friends Group Co-ordinator via our Branch Secretary.

Regional Care Development Adviser

The Regional Care Development Adviser (RCDA) is a full time member of the Association who has detailed knowledge of the care and management of Motor Neurone Disease. Working very closely with local statutory services and community care providers RCDAs are able to provide support and advice to people with MND and their families. They are also supported by a number of trained volunteer Association Visitors who themselves offer caring, practical support to people with MND and their families.

For further details, please contact the RCDA for this area (covering Oxfordshire, Berkshire, Buckinghamshire, Northamptonshire, and Bedfordshire).

Volunteer Development Co-ordinator

Volunteer Development Co-ordinators (VDC) are regionally based staff who provide advice and support to Branches and other Volunteer groups and also encourage and help to set up new Branches and groups.

For further details, please contact the VDC for this area.

Oxfordshire MND Care Centre

Since 1990 the MND Association has developed a network of MND Care Centres across the country. The Oxfordshire Care Centre is based in the Department of Clinical Neurology at the Radcliffe Infirmary.

The Centre has a multi-disciplinary team that provides a comprehensive service to people with MND, combining research with local services. People may be referred to the Centre by their GP or sometimes by another neurologist.

Location:

MND Care Centre
Clinical Neurology
Third Floor
West Wing
John Radcliffe Hospital
Headington, Oxford OX3 9DU
Telephone: 01865 231 904

For further details please contact our Care Centre Co-ordinator.

Support for Carers in Oxfordshire

Since April 2002, Direct Payments have been available from local authorities for individuals to purchase personal care, transport, respite care and equipment. Oxfordshire has set up a support scheme to help people manage this.

Find out more by visiting the Oxfordshire County Council website where you can download a booklet Fair Access to Care Services and obtain details of how to contact their Access Team. The telephone number is currently: 0845 0507666, or 0800 833408 for out of hours or emergency support.

There are several carer services in Oxfordshire that can provide help and advice though they are not specifically oriented towards MND.

Carers Forum

The Oxfordshire Carers Forum is an independent voluntary organisation of carers and ex-carers. They are an advocacy group for carers. You can contact them on:

Telephone: 01993 706543
Email: admin@oxoncarersforum.org.uk
or write to:
Oxfordshire Carers Forum
FREEPOST(SCE9038)
Witney, OX28 4AZ

They have courses and special days for carers. Cover for Caring and travel expenses will be paid for by the Oxfordshire County Council as it is a Government initiative.

We have included the most appropriate of their events on our Events page. They say about their courses: "You will learn how to organise your life, reduce stress, improve your own health and not feel guilty. You are important to the person/s you care for and many others who rely upon your caring".

Carers in Oxfordshire

Carers in Oxfordshire sponsored by Oxfordshire County Council aims to provide information on help and support for Carers in Oxfordshire. The website includes information on a number of carer support organisations throughout Oxfordshire.

Two other useful sites provide information for carers throughout the U.K.

Carers UK

Carers UK is a website whose aims are to provide "information and advice on carers' rights", and "a forum to share your experiences with others".

Directgov

Directgov is a Government run information site for carers in the UK.

NHS Continuing Care

Continuing care is a general term describing care provided over an extended period of time to those aged 18 or older to meet physical and mental health needs that may have arisen as a result of disability, an accident or illness. The present legislation results from the changes in October 2007, "The Framework for NHS Continuing Care".

Health and Social Care are now one service but some elements seem still to be separate and may require services from the NHS and/or social services. Some Carer services are provided by Oxfordshire County Council (see above) others are provided by the NHS.

Where can you get information on NHS services?

• Age Concern has a fact sheet: NHS Continuing Healthcare (Responsibilities) Directions 2007, which can be downloaded from their website or you can get a copy from your local age concern office. If you are assessed and are eligible, all your care needs will be paid for by the NHS regardless of your assets. You can be eligible "If you have a rapidly deteriorating condition, which may be entering a terminal phase".
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• The Oxfordshire Primary Care Trust (PCT), Freephone: 0800 052 6088.

Oxfordshire Befriending Network

The Oxfordshire Befriending Network provides "befriending, advocacy and counselling to people with a life-threatening or terminal diagnosis". Their services are available across Oxfordshire and are provided by fully-trained volunteers.

For a story of personal experience with the Befriending Network, please see our April 2008 newsletter.

If you or someone you know would benefit from their services, please contact them by email at: enquiries@oxonbefriending.net.