Nurse Barbara Wingrove is making a big difference to the lives of isolated MS sufferers. Health Correspondent Barry Nelson reports.

NO-ONE knows why parts of the North-East have higher than average levels of multiple sclerosis. In Weardale, the MS rate is at least double the national average.

Experts suspect that environmental, genetic or even geological factors may affect the likelihood of developing MS.

In the UK, the highest levels are found on the Orkney Islands in the far north of Scotland.

According to the MS Society, multiple sclerosis is the most common potentially disabling disease of the nervous system affecting young adults in the Western world. An estimated 50 people, usually aged between 20 and 40, are diagnosed with the condition every week. Common symptoms include pain, tiredness, and problems with sight, mobility and co-ordination. The illness ranges from being benign, through to "coming and going", to severely disabling.

While there is no cure for MS, there are now drugs which can be used to treat or manage many symptoms. Having MS is bad enough but if you live in a rural area with poor transport links to local hospitals, the situation can be much worse, leaving vulnerable people feeling isolated.

That was the reality for many people with MS in Weardale until an unusual alliance was forged between local campaigners, the national MS Society and the NHS.

As part of a push to increase the number of specialist MS nurses in rural areas, the MS Society approached primary care trusts in County Durham and Darlington with a novel proposition. If the MS Society were to make a contribution to funding a community nurse, would the NHS consider taking over? A number of PCTs were approached but only the Durham Dales PCT, which covers Weardale, Teesdale and the Wear Valley, was prepared to accept the challenge.

Betty Roberts, chairman of the Stanhope and Weardale MS Society, said supporters were so grateful for the move that they have pledged to raise £10,000 locally to top up national MS Society coffers.

Following a commitment from the national MS Society to inject £10,000 per annum for three years, Durham Dales PCT gave the project the green light. This August, a new era began for people with MS in Weardale, Teesdale and Wear Valley when specialist nurse Barbara Wingrove started her job.

Barbara, who has many years experience of working with MS patients in Hull and East Yorkshire, is believed to be one of the first of a new type of community MS nurses operating in a primarily rural environment.

Seeing between 15 and 20 patients a week and averaging 1,000 miles a month, she sees her role as a vital link between the patient and wider NHS services.

Within the first few days, the patient referrals came in thick and fast.

"It's the empathy, support and practical advice they seem to appreciate more than anything else," says Barbara, who reckons that the official total of 185 MS patients on her patch is probably an underestimate.

"I teach people to self-inject and self-care and encourage them to join the PCT's Expert Patient programme. You can't beat seeing people in their own home. People will often open up to you and tell you their real concerns and you also get to hear from the rest of the patient's family."

Sometimes it seems that just knowing that Barbara is always on the end of her mobile phone seems to be enough for many patients. "I usually see between four and five people a day, usually in the same dale for practical reasons," she says. "Trying to provide tailor-made care is what it is all about. I will see the patient about a problem, talk to the consultant and let the GP know what is happening."

Barbara has close links with consultant neurologists at James Cook University Hospital, in Middlesbrough, Bishop Auckland General Hospital and the region's main neuro-rehabilitation centre at Hunter's Moor in Newcastle.

One recent achievement linked to Barbara's arrival is the provision of a specialist neuro-physiotherapist at the Weardale Community Hospital in Stanhope. "Patients have had to wait a long time to have therapy at Bishop Auckland hospital because the demand is high. Now we have a physiotherapist at Stanhope who has been trained at Hunter's Moor," she says. Without extra funding from the local MS Society, this service would probably not have been provided.

A former district nurse attached to Hartlepool General Hospital, Barbara has specialised in MS for years. More than anything else, she can reassure patients about their condition. "I see everyone from newly diagnosed patients to those who have a more advanced form of MS," she says.

"Each phase of MS brings its own problems. I see myself as a go-between linking patients with GPs, consultants and other health care professionals."

One of her regular calls is at Angela Johnson's home in Coundon, near Bishop Auckland. The first thing Angela, a 32-year-old mother-of-two, knew about MS was when her legs suddenly buckled under her.

"I had just fed my little boy and put him into his cot upstairs when my legs just went and I collapsed. My right side was numb, including my face," recalls Angela.

She managed to slide downstairs and ring her parents, who dialled 999 for an ambulance. "It was all a blur. I didn't really know what was going on," says Angela, who admits that she was very frightened.

After assessment at Bishop Auckland and Darlington hospitals, she was transferred to James Cook hospital in Middlesbrough, where specialist neurology staff told her she probably had MS.

That's when Angela made the mistake of turning to the Internet for information. "What I saw there about MS really scared me," she recalls.

Her family tried to reassure her about her illness but Angela admits she was so frightened and confused that nothing helped. It was the new community MS nurse, Barbara Wingrove, who made the difference on her very first visit. "I was really down on the floor until I met Barbara, she really picked me up," says Angela. "Unless you have someone like Barbara telling you exactly what is happening, it is really frightening. At one stage, I had convinced myself I had cancer."

Apart from dispelling fears and explaining symptoms and treatment, Barbara has also liaised with Angela's local GP to ensure she is getting the medication she needs. Another bonus has been meeting other local people with MS through the PCT's Expert Patient programme.

"They actually ran the course in my village one morning a week. It was fantastic, it really builds your confidence up," says Angela, who has become firm friends with three other local women who have MS.

Barbara says the work is very rewarding, citing the case of a male patient whose condition has dramatically improved since he was given more appropriate therapy and medication. "At first he told me I was 25 years too late and couldn't help. He was bent double and hadn't been out of the house for ages," she says. But after 12 weeks of physiotherapy, he managed to walk out of his front door and to the end of his garden with just a walking stick to support him.

Betty Roberts has no doubt that Barbara has made a huge difference since her arrival. "She has done brilliantly. She is like a breath of fresh air. People tell me they have never felt so well since they were first diagnosed because of Barbara. She is responsible for changes in treatment and care regimes which have helped many people."

* For more information about MS ring the free helpline: 0808 800 8000.