Sufferer’s say helps others

A couple from the Advertiser area have helped East Midlands Ambulance Service to improve its care of people with motor neurone disease.

Mrs Penny Bassey (61) of Ordoyno Grove, Coddington, who has the progressive degenerative disease, and her husband, Mr Michael Bassey (76) who is her carer, have played a key role in developing the project.

The couple, who became involved because Mrs Bassey is the main contact for the Nottinghamshire branch of the Motor Neurone Disease Association and her husband is a committee member, attended a series of meetings at the ambulance service headquarters in Nottingham.

As a result the ambulance service now gives more consideration to the wishes of patients with the disease as well as improving their overall and end of life care.

The project, which initially covered only Nottinghamshire, is being extended to cover the whole East Midlands Ambulance Service area.

Mrs Bassey said people with the condition often had a feeding tube inserted directly into their stomach which sometimes came out or there were other problems that meant they had to go to the Queen’s Medical Centre.

Mrs Bassey said if it was not fixed quickly then they would have to have it fitted again, which could be an uncomfortable procedure involving a stay in hospital.

Mrs Bassey said as a result of the project, emergency care practitioners, who are paramedics with specific training, were being trained to carry out non-life threatening procedures such as this in a patient’s home and sufferers need only call an ambulance.

Mrs Bassey is among those who have signed a legally binding document, in case she loses the ability to speak, stating she does not want to have invasive treatment.

The project means patients with motor neurone disease who call an ambulance are identified on the system.

This enables them to be given palliative care rather than invasive treatment if that is what they want.

Mrs Bassey was diagnosed with the condition almost five years ago.

It leads to weakness and wasting of the muscles, causing increasing loss of mobility in the limbs and difficulties with speech, swallowing and breathing.

She said she was one of the lucky ones, as about half of people died within 14 months of diagnosis and most died within two to five years.

Mrs Bassey said she could do very little with her arms and she uses a wheelchair because her legs are very weak.

She said she previously thought of the ambulance service as a glorified taxi service but she was so impressed with the work they were doing.

Mrs Bassey said: “It really will make a difference.”

She said she hoped the project could eventually be extended throughout the country and be applied to other long-term conditions such as multiple sclerosis and Parkinson’s disease.

A spokesman for Nottinghamshire Primary Care Trust said the project was an example of best practice and doing something innovative to improve patient care.

She said it was this sort of project that could be introduced in other areas of the health service through the A Picture of Health consultation.