For MS sufferer Julie Harrison, having a specialist nurse has made living with her diagnosis much easier.
But new research has found that two-thirds of people in the UK live in an area where there is a shortage of specialist MS nurses.
The MS Trust has launched its #No1alone campaign to fund more of the experts after a report showed that around 68,000 people find it difficult to access this vital care and support.
Julie Harrison, from Horsforth, Leeds, was diagnosed with MS in 2013 after a series of falls and later, developing severe pain in her abdomen.
Now, the mum and grandma from Horsforth, Leeds, lives with a variety of symptoms which can differ every day, including pain and serious fatigue.
“I make decisions like ‘am I going to go in the shower today, or go to the shops?’ because I can’t do both,” she said.
“I’ve had to give up work because of the fatigue and my mobility, as I walk with a stick. Your whole life just changes.”
But from Julie’s initial diagnosis, her specialist nurse has been there, visiting her at home, meeting her family and helping her decide on treatment.
When the 49-year-old was going through a particularly tough time, her specialist nurse arranged for her to see a clinical psychologist specialising in MS to help her deal with the diagnosis.
“Having a specialist nurse makes a massive difference.
“It’s like a security blanket. I know that if there’s a problem, I can just ring and she will be there to answer and point me in the right direction.
She said she was shocked that not all MS patients had this level of support.
“I thought ‘how do people manage who don’t have what I’ve got?’,” Julie added.
West Yorkshire is one of those areas with a shortage of nurses, with the charity calculating there would need to be a 43 per cent increase to ensure those working in the county have a manageable number of patients.
Alison Smith, from Hunslet, doesn’t have an MS specialist nurse, which she says leaves her struggling.
She was diagnosed 17 years ago and she now uses a mobility scooter. The mum-of-one said that treatments available don’t help and she would have to pay over £70 for a personal assistant to assist her around the house.
“If I did have an MS nurse, I would have somebody behind me,” Alison said.
Amy Bowen, director of service development at the MS Trust, said: “The dangerous lack of specialist nurses can have grave consequences for people with MS.
“They may have to rely on nonspecialist support for what is a highly complex disease.”
An MS specialist nurse covering Bradford says she sees about 800 people with the diease, but a manageable caseload is 358 patients – less than half that number.
Liz Watson, who provides expert information and support, said: “This results in patients getting a watered down service due to me splitting my time equitably amongst all of those patients.
“It sometimes means that response time to phone calls is longer than it should be and the waits at clinics should be shorter.”
for more: Visit www.mstrust.org.uk/no1alone