Dorothy House Hospice Care, the Royal United Hospital, Bath (RUH) and the Motor Neurone Disease Association were jointly recognised by Her Royal Highness The Princess Royal at a reception hosted by the Motor Neurone Disease Association at Cheltenham Racecourse earlier this month (4 June). The three organisations were praised by Her Royal Highness, who is the Royal Patron of the MND Association, for a collaborative pilot project which resulted in the creation of a shared Motor Neurone Disease co-ordinator role to support local patients and families.

Motor Neurone Disease (MND) is the name given to a group of related neurodegenerative diseases, which are progressive, incurable and life limiting. The motor neurones control the movement of muscles throughout the body, in MND the motor neurones gradually become ineffective and the muscles stop working. It kills a third of people within a year and more than half within two years of diagnosis.

The aim of the shared co-ordination role is to support patients with MND to maintain their independence and quality of life and to support them and their families in coping with an incurable disease. The role also provides a co-ordinated and collaborative approach between the many health care professionals involved to address each patient’s needs.

Dorothy House Hospice Care provides free palliative and end of life care from early diagnosis onwards and serves a population of 550,000 across Bath and North East Somerset (BaNES), Wiltshire and Somerset. Providing hospice services requires significant funds and for every one pound received from the NHS, Dorothy House needs to fundraise for a further four pounds to maintain its services.

Dr Patricia Needham, Medical Director at Dorothy House commenting on the royal event said: “It was a privilege to be recognised for the positive outcome of the collaborative MND project developed by Dorothy House, RUH Bath and the MND Association.  We were acknowledged for the improved co-ordination of care the shared MND role provided for patients living with motor neurone disease and for the strengthened links between clinicians involved in the care of individuals. It was also good to hear the vital role of care co-ordination confirmed by the guest speaker, who herself has motor neurone disease.”

Marie-Suzanne Magee, Motor Neurone Disease Specialist Nurse at RUH, Bath and Dorothy House said; “Patients are at the centre of the care I deliver and I act as the single point of contact for patients, families and professionals, providing information on the disease and symptom management and referrals to health care professionals. I am grateful to all three organisations who have supported my role in this two-year pilot and for having the foresight to know that a Motor Neurone Disease Specialist Nurse can make a real difference to patients and their families living with this challenging condition.”