More MS news articles for April 2001

Disabled sufferer to fight for proper care every step of the way

Sunday 15 April 2001
ISSUE 2151
By Lorraine Fraser, Medical Correspondent

Kendal Lee, 56, has been suffering from MS for more than 30 years and is almost bedridden. He and his wife, Sue, from Macclesfield in Cheshire, have had to fight every step of the way to ensure that he gets the care that he needs.

Mrs Lee said: "The NHS is a disaster for anybody who is quite badly disabled. My husband does see the neurologist still but that will end soon when it is too difficult to get him there."

When her husband's skin broke down recently - a complication of his illness - the couple had to find £1,000 to pay for his special mattress. The local hospital gave him one and then demanded the money for it six weeks later.

Getting the care for problems other than his MS can be a nightmare, Mrs Lee says. "Kendal was very recently rushed into hospital with a gastric ulcer. The blue flashing emergency ambulance arrives and they couldn't take him. Not only did they not know how to use the hoist to get him out of bed they couldn't get the wheelchair into the ambulance.

"We have a little vehicle which carries the wheelchair. We ended up with the paramedic sat in the back of our van, one of the attendants driving it with the blue flashing light ambulance behind. When we got to the hospital the hoist, the one portable hoist that they had, could not be found so they couldn't get him on to a bed. When we pointed out that he had problems with his skin, they asked me to go home and get his mattress. He was finally admitted and on a bed in accident and emergency four-and-a-half hours later.

"The problem is that the NHS takes little or no notice until there is a crisis. Our GPs when I call them are good but they only ever come out in an emergency, so the underlying health problems that I have concerns about never get discussed. I have just managed to make an appointment for them to come out, the first time in 12 years."

It is this lack of general care that so dismays her husband. Mr Lee told The Telegraph: "All my problems are medical but the NHS ignored them when I was young and then handed me over to social services. The NHS only offers help in an emergency and then cannot cope with me in hospital."