Loose Women TV star Denise Welch visited the Motor Neurone Disease (MND) Association’s national office in Northampton to thank its helpline team for their support to people living with a devastating terminal condition.
The MND Association’s MND Connect helpline team is a lifeline for everyone affected by the disease – responding to thousands of calls and emails each year from people living with the disease, their family members and carers, and the health and social care professionals who provide support.
Denise Welch, starring as the Fairy Godmother in Cinderella at the Royal & Derngate in Northampton until Sunday 6 January, is a long-standing supporter of the MND Association.
She said: “I have had experience of this horrendous condition in my personal life. My dad’s best friend John died six years ago. I understand this condition first hand and realise how horrendous it is and how little is known about it.
“A lady who worked for me, Marjorie, had a son Andrew, who was diagnosed at 38. He sadly deteriorated quite quickly.”
Denise who until recently was patron of the Association’s Manchester & District Branch has also previously donated funds to the Association from her annual high-profile charity ball in Manchester.
Patrick Joyce, who fronted the MND Association’s 2010 Incurable Optimism campaign, was honoured with a British Empire Medal (BEM) in the 2013 New Year Honours List released on 29 December
Patrick, along with Rosemary Pack from Essex are both living with Motor Neurone Disease (MND) and they together with Lino Pires, a local businessman have been recognised with the BEM for their continued commitment to fundraising for charities including the MND Association and supporting services in their local community.
Patrick, who lives in Wells, Somerset, with his wife Kathy and their three children Reuben, Elliot, Nancy, was diagnosed with Motor Neurone Disease (MND) in 2008.
When he received his diagnosis he gave up painting but took it up again to front the Association’s 2010 Incurable Optimism awareness campaign under the name Patrick the Optimist.
The newly-reinstated British Empire Medal for Services to the Community have been presented to extraordinary people like Patrick right across the United Kingdom in recognition of their achievements in charitable or voluntary work.
As a way of demonstrating his own optimism, and to inspire others to raise funds and awareness of MND, Patrick set himself the challenge of painting 100 portraits depicting incurable optimists from the MND community. Patrick’s efforts were promoted on the London Underground and portraits themselves exhibited at the Houses of Parliament.
Speaking at the time about the campaign, Patrick said: “I have found out first hand what MND does to individuals and their families. I want to get better care for me and my fellow sufferers and I want a cure.
"To do this we need to raise awareness and get more money for research. I will not get to see my daughter go to school and want to do anything I can to stop that happening to others."
The NHS Constitution is set to include the right for patients and families to be involved in end of life care decisions, under the Department of Health new proposals.
In response, Farah Nazeer, Director of External Affairs at the MND Association said:
“People living with motor neurone disease (MND) have the right to the highest quality of care at the end of their lives. We welcome the Government’s announcement today that it is to propose new changes to the NHS Constitution, which would set out a new legal right for patients and their families to be consulted on end-of-life care decisions.
We have been concerned about recent media coverage of the Liverpool Care Pathway and the distress this might cause for people with MND and their families. In response to this we have signed up to a consensus statement working with 20 organisations including professional bodies, third sector organisations, disease specific charities and organisations representing care homes, hospices, social services and palliative care specialists
We will continue to work with the Government to ensure the complex needs of people living with MND are taken into account in the planning and delivery of end of life care.”
More than a 1,000 working Doctors, Nurses and Carers have written to the Daily Telegraph defending the Liverpool Pathway saying that this is how they themselves would want to die.
(05/11/12)
