Who We Are

Frances Carroll, MNDA Regional Care Development Advisor

My area covers all of Essex and the North East London boroughs of Hackney, Tower Hamlets, Newham, Barking and Dagenham, Waltham Forest, Havering and City of London. Currently the Association is in contact with 180 people with Motor Neurone Disease in this area.

I am one of 22 Regional Care Advisors employed by the MND Association across the country including Wales and Northern Ireland, all of whom have detailed knowledge of the care and management of Motor Neurone Disease. We each have a geographical area in which we work to support and offer advice to people with MND and their carers and families. This may be through direct contact or telephone contact.

We also liaise with, and provide support and information, to health and social care professionals working with people with MND in order that they gain appropriate and timely access to services in the area in which they live. This involves us working with health and social care professionals such as neurologists, nurses, social workers, physiotherapists, occupational therapists, speech and language therapists and palliative care professionals on an individual case basis, as well as providing education and advice opportunities in an area about the management of MND.

This can range from talking to staff in nursing homes or organising study days in an area for health and social care professionals. We also link in with local multidisciplinary teams in different areas to ensure that people with MND have access to all therapy services in their area.

Apart from supporting people with MND and their families and health and social care professionals working alongside people with MND, we have a network of Association Visitors (AVs) who provide excellent ongoing support to people with MND. We are involved in the training, ongoing support and organisation of AVs in our area.

We also have an influencing role across our patches to ensure that services meet the needs of people with MND. We are involved at a local level in campaigning to ensure the commissioning of services both within the care services and NHS are adequate for people with MND. Currently, we are involved in increasing understanding about the respiratory and nutritional needs of people with MND to ensure access to appropriate interventions as and when people with MND need these interventions.

One of the difficulties that we have is that each area will have different ways of working within the NHS and Care Services and we have to work across the patch to ensure that people with MND receive equality of service, despite there being different set ups in each area. And of course, things are constantly changing. For example, the Primary Care Trusts in Essex are currently being reformed with new strategies and ways of working evolving. As an RCDA, this is a constant reviewing of who we need to influence in order to ensure people with MND receive the care and support they need.

Liz Edmonds, MND Nurse Specialist HPCT

I cover the Barking and Dagenham and Havering areas. Most of my patients with MND are under the care of the local neurologists. Once the patients are diagnosed, they are referred to me. On receipt of the referral letter, I make contact by doing a home visit. Then I assess and refer these patients to the multi-disciplinary team where the expertise of the dietician; speech and language therapist; occupational therapist and physiotherapist will be included from time to time in the plan of care.

My patients are regularly visited at home and ‘do not get lost in the system’. I provide counselling education and support from the time of my first home visit. I attend the local YMCA support meeting as often as possible because I feel PASSIONATELY for people living with MND and their carers. I want them to know what services they are entitled to and help them as they cope with the progressive nature of MND. I am also very involved in teaching general nursing students and enjoy having them with me in the community to ensure they appreciate the value of ‘person and carer centred’ model of care, where the person with MND and their carer must be involved in planning the care.

I am delighted that we were able to hold a ‘Dr De Silva and Dr Green panel’ at the YMCA meeting on the 18th October 2006, to enable people with MND and their carers to ask questions about ANY aspect of MND, as it is a very complex condition which on going research must still reveal the cause of. My advice to people with MND is to accept ‘all help on offer’ and to attend the local support meetings because it is the person with MND who is the expert.

More profiles coming shortly