Gavin Williamson MP for South Staffordshire and Chairman of the All Party Parliamentary Group (APPG) on Motor Neurone Disease (MND) has called for a debate on palliative care following the APPG inquiry.
After hearing 20 witnesses and reviewing written evidence from 62 organizations and individuals including MND sufferers and their care givers, the inquiry found that a majority of patients are poorly cared for by existing services. One problem of particular concern was the poor quality of out of hour services that lead to many cases of unnecessary and expensive emergency hospital admissions. The inquiry also brought to light concern that many health care professionals were unsure how to care for people with MND and failed to coordinate with other professionals and services. The average cost to the NHS to care for a MND patient is £16,500 per month; however, the committee found that when poor care is given that cost could rise to £28,000 per month.
The recommendations that the APPG delivered to Andrew Lansley MP, Secretary of State for Health were that there should be end of life care registers so all NHS providers have information about the needs and wishes of people with MND and can provide information on specialist palliative care provision in a timely way; higher standards used to measure quality of palliative care including community nursing 24/7; commissioners should provide data showing the improvements; and that there should be a detailed listing of end of life services and specialist palliative care services published on PCT/GP consortia websites so patients can easily find end of life services and specialist palliative care services within their area.
Commenting on this Gavin Williamson MP said:
“It is vitally important that the government does all that it can do to ensure that those who suffer from motor neurone disease get the high level of care that they need at the end of their lives. This is not just because good care will be so much cheaper for the health service but because we do owe those who are suffering from this dreadful disease the right to proper care and dignity at the end of their lives.”