The 5Rs to helping people with multiple sclerosis

Sally Laws, 49, has lived with multiple sclerosis for over 20 years. But despite having a family to care for her over that time, the disease put a strain on her relationship with them and made her feel alone. “Having MS is an isolating condition and one can end up thinking ‘I’m the only one with these symptoms’,” she says.

While there were plenty of services available for those with fresh diagnoses or advanced symptoms, Laws found there was little else for others in her situation. That is until neurological charity Sue Ryder Care set up its 5Rs programme in 2005 to target people like Laws living in Suffolk.

Comprising a 10-week course of therapies and confidence-building, the programme is run as a day care service at the Chantry centre in Ipswich. Jo Marshall, the care centre manager for the Chantry, worked with Ipswich Hospital Neurology Department and the local branch of the MS Society to build it.

5Rs has helped over 70 users in the last two years, with 10 users in each 10-week session. Each placement costs £400. Some users are funded by Sue Ryder Care, others by the MS Society. Social services have also funded some users, but they only happens when someone has more advanced needs.

A senior support worker and three activity assistants are supplemented by a range of visitors and speakers. They provide alternative therapies such as aromatherapy and reflexology, and educational classes in art and computing.

While the sessions are designed to help users find a therapy or hobby they may like to carry on after the 10 weeks have finished, the programme is designed to help users confront deeper issues than they would at day care. The five Rs of the programme are focused on confidence-building for the user – to re-energise, reintegrate, rebuild, relax and regenerate – to provide benefits after the scheme has finished.

Tracey Plested runs the programme at the Chantry. “What has come out of this is that they’re experiencing a lot of emotional turmoil. That’s a common denominator.

Some people have no family at all, and they need to talk.

“We can teach them many things, but they can learn more from each other, letting them know they’re not the only ones that feel that way.”

For Laws, meeting other people has helped boost her confidence, and she has since stayed in touch with two people on the programme. “You can talk about your different symptoms, and what has been good for somebody else may be good for you. It really gave me a lot of encouragement.”

And not just those suffering from MS need something like this. A sister group to 5Rs for carers was encouraged by social care commissioners as they were keen to provide support that could keep users out of long-term care.

Says Plested: “I quickly became aware they needed support. They would ask practical questions and I could help up to a point, but there were lots of questions and they were very similar ones. There was an emotional side of things as well. Again, they feel very frustrated and guilty when they have negative thoughts.”

The five-week programme for carers and relatives follows a similar pattern to the original programme for MS sufferers – and is run at the same time – providing a mix of practical sessions, as well as a chance for people to meet others in the same situation. The final five weeks of the main programme then allows carers time to themselves while the users take part.

The two-sided approach of 5Rs has meant it has now been recognised as an example of good practice by the Department of Health. In the immediate future, they are now looking to extend the course into West Suffolk. In the longer term, Sue Ryder Care is working with the MS Society to replicate the model elsewhere in the UK.

Jo Marshall, the Chantry’s manager, says the programme can be an effective alternative to day care for other users with neurological problems such as stroke victims, as long as they focus on outcomes.

“In day care they just come along to have a good time and leave their troubles at the door. But when people leave this course, they can go on to do other things.”

Tips

• Adjust each session to follow the needs and interests of the group, paying attention to specific physical limitations.
  
• Draft in outside help for areas of expertise such as counselling and therapies. The experts may be able to provide discounted services to users afterwards.
  
• Confidence-building is crucial, particularly for those without support networks. Some may need to do the course more than once to overcome anxiety and make the most of it.