A summit that is seeking to change care conditions for people living with motor neurone disease has been given royal backing.
Hosted by the Motor Neurone Disease Association (MNDA), the summit has brought together key figures in end-of-life care and representatives of the three major political parties, as well as MNDA patron HRH The Princess Royal.
The charity wants to establish some firm recommendations on acceptable standards for end of life care, which affects people in the latter stages of motor neurone disease.
According to MNDA research, inadequate planning and standards actually means that the cost to the NHS of providing care for patients with the conditions is much higher - in some cases nearly double what it should be.
"It is time this government understood the plight of MND patients. Service across the country is patchy and often ineffective and unsympathetic," said motor neurone disease patient Chris Woodhead, who attended the summit.
The MNDA estimates that two in every 100,000 people in the UK develop the disease each year.
Find the nearest Barchester care home