York and District against Motor Neurone Disease (YAMND)) to close but support for Motor Neurone Disease to continue.

York and District against Motor Neurone Disease (YAMND) is to close after 25 years. The charity was initially set up by a small group of volunteers who felt there was a need for a dedicated charity working in and around York to help and support those affected by this devastating disease. There is no known cure at present for Motor Neurone Disease but much can be done to help, in the form of emotional and practical support. YAMND employs a Specialist Nurse who has provided a listening ear in difficult times, worked with Healthcare Professionals to coordinate care and instigated the provision of equipment to make life more comfortable.

YAMND has been run by a volunteer Management Committee who, with the help of members, volunteers and supporters have steered the charity through a successful 25 years. The charity has been totally funded by generous donations or acts of amazing fundraising which has allowed the charity to continue thus far .As well as working with people living with MND in the York area YAMND has also supported a research programme at Sheffield University and over the years has donated in excess of £45,000 to research into the possible causes, treatment and hopefully soon cure for MND.

In a recent survey conducted by Neurological Commissioning Support (NCS) the work of the charity was highlighted as being one of the best models of care for MND sufferers in the country. This came as no surprise to those involved in YAMND as many letters are received acknowledging how grateful people are for the assistance given by the charity. This recognition is also, in no small way, due to the fantastic work of the current Specialist Nurse, Doreen Foster, who has been with the charity for over 18 years and has achieved recognition from many sources for her outstanding work within the field of caring for those coping with MND. Doreen did in fact win York Press Community Pride award in 2011.

Whilst YAMND is extremely proud of what it has achieved over the last 25 years the charity has struggled to attract new volunteers to act as Trustees and manage the charity in what has become an increasingly responsible role .It was therefore a difficult decision for members at a recent AGM to vote to dissolve the charity knowing this would leave a huge void in the local support for MND sufferers. It is therefore fantastic news to hear that York CCG and York Hospital Trust, having recognised the wonderful work of the charity, have agreed to take over the support service and to commit to the service long term. Doreen Foster, YAMND Specialist Nurse, will also transfer with the service, which is great news for those patients Doreen is currently working with and for any newly diagnosed patients in the York area.

Doreen Foster said. “Although I am sad that YAMND will shortly close, I am very pleased that the role of MND Specialist Nurse, which I have developed with YAMND over the years, has been commissioned to continue by the CCG. This will mean that the support of patients and families affected by Motor Neurone Disease will continue now and into the future“.

Karen Cowley, Directorate Manager Specialist Medicine York Teaching NHS Foundation Trust, said: “We are delighted to welcome Doreen to the Trust and value her years of experience in helping people cope with this illness. This will mean that the support of patients and families affected by Motor Neurone Disease will continue now and into the future.

Dr Mark Hayes, Chief Clinical Officer NHS Vale of York CCG, said: “We are keen to ensure that patients receive the right care at the right time and have recognised the value of the specialist nurse role that had been supported over several years by the charity. We are working with the Neurological Commissioning Support service to further establish integrated care pathways for patients with with Motor Neurone Disease.
 
Hazel Allison, current Chairperson of YAMND said.”This really is good news for the people of York and I am grateful that the CCG and York Hospital Trust have felt the service, set up by the charity, is a model of care they feel able to commit to and know that Doreen Foster will bring a wealth of experience with her in her new appointment with the Trust .All those involved with YAMND are proud of its achievements and it is comforting to know that although YAMND will close the much needed support for those suffering from this terrible condition will continue.

The Management Committee of YAMND are working with the York Trust in order to arrange a seamless transfer of the service by 31st MARCH 2014, when the charity will be dissolved.

More Information and support for those living with Motor Neurone Disease can be obtained from Motor Neurone Disease Association (MNDA) www.mndassociation.org or contacting MND CONNECT 08457 626262

CCG NHS Vale of York Clinical Commissioning Group (CCG) is the statutory body responsible for commissioning healthcare services for patients across the Vale of York.

NCS Neurological Commissioning Support are the national experts in neurology commissioning. NCS is a not for profit organisation

 

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