A helping hand when you need it

Being diagnosed with multiple sclerosis is a frightening and life-changing moment, but there is help at hand, as Hilary Freeman reports


CHARITIES

MS Society: Since its creation in 1956, the MS Society has invested more than £148 million in multiple sclerosis research. The charity campaigns for access to treatments and better care, and provides financial and emotional support and information through its free helpline, website, publications and volunteer-run local branch network. It also provides grants towards home and car adaptations, and mobility aids. Chief executive Michelle Mitchell says: “We are committed to supporting people with MS to take control and live life, knowing they don’t have to face MS alone.”

MS Trust: Set up in 1993, the MS Trust is a small charity, which works to make life better for people living with MS. It provides free, practical, positive MS information, including a freephone information service, and funds research into better ways of living with the condition. “We want to make sure that everybody affected by MS gets the best possible care,” says chief executive, Pam Macfarlane. “That’s why we train every new MS nurse, support all MS health professionals and campaign for good quality, local MS services.”

Shift MS: Targeted at young people in their 20s and 30s, and the newly diagnosed, Shift.ms is a web-based social network for people with MS. If offers social support, with forums allowing “MSers” to share their experiences and swap tips on managing the condition, as well as up-to-date information on MS research. Started by MSer George Pepper and Freddie Yauner in 2009, the site now has more than 6,000 members worldwide. In recent years Shift.ms has produced several short films about MS, focusing on topics such as diagnosis and disclosing to your employer, which have generated thousands of views on YouTube.

NEUROLOGISTS

“Neurologists both treat patients and, crucially, help them to self-manage their MS,” says Raj Kapoor, consultant neurologist at the National Hospital for Neurology and Neurosurgery in London. “Neurologists are particularly important at the time of MS diagnosis, which is almost always a very traumatic period. They are instrumental in giving advice and information on treatments, particularly disease-modifying treatments of which there are now several, as well as lifestyle. For those with progressive MS, for whom there are not yet any treatments, neurologists can give support and treat individual symptoms.”

Neurologists don’t work in isolation; they co-ordinate a multi-disciplinary team, made up of MS nurses and other practitioners, such as physiotherapists or occupational therapists. Referrals come from many sources, depending on how MS symptoms first present. If your first symptom is a vision problem, for example, you might be referred by an ophthalmologist, rather than your GP. Waiting times are usually only six to eight weeks, making private consultations and expensive tests of little advantage, unless you have medical insurance.

How often patients are seen depends on the course of their disease and type of symptoms, but it’s common to have an annual follow-up. Unfortunately, there is a recognised shortage of neurologists in many areas of the UK, so many patients find it hard to access one locally. The National Institute for Health and Care Excellence (NICE) is currently drafting guidelines for the management of MS in both primary and secondary care, which should be published later this year.

MS NURSES

If you’ve just been diagnosed with MS, have a troubling new symptom or need emotional or practical support, an MS nurse would probably be your first port of call.

MS nurses are trained specialist nurses with a background in neurology or graduate qualification in studying MS. They may work in hospitals or in the community. Patients first need to have been referred to a neurologist to see one, but they are generally much more accessible.

“Our role is as the first point of contact after diagnosis and to support people with MS at all stages of the condition,” says Bernadette Porter, consultant nurse in MS at University College London Hospitals NHS Foundation Trust. “We help people adjust to the diagnosis, offer education on symptom management, help them understand what’s going on in their bodies and how to deal with the impact of MS on their lives. We can link patients with other team members, and teach them how to navigate the health and social-care system.”

How often an MS patient sees a MS nurse depends on their condition and whether or not they’re taking a disease-modifying treatment that requires regular monitoring. “I see patients twice a year on average, but it isn’t always face to face,” says Ms Porter. “At the National Hospital, we’ve just set up NeuroDirect, an MS specialist nurse telephone helpline.”

There are now more than 250 MS nurses working in the UK, but they’re overstretched – the MS Trust estimates that at least 300 are needed – and in many areas patients still don’t have access to one. NHS cuts mean their jobs are under threat.

MS CENTRES

Self-help is of essential importance to many people with MS, particularly as there aren’t effective treatments for all, and treatment and care can be hard to access. MS therapy centres were set up to meet this need, providing support, advice, information and therapies to help people self-manage their symptoms.

Lynn Hurst is the manager of the Harrow MS Therapy Centre, which has been open for almost 30 years. “We offer our members a range of therapies which are designed to be of benefit to those with MS. These include physiotherapy, high-dose oxygen treatment, yoga, chiropody, aromatherapy, massage and reflexology,” she says.

“As well as this, the centre is, for many people, one of the few points of social contact they have during the week. I think that what we achieve here is a professional level of treatment, in a relaxed, sociable and informal environment, for people for whom the NHS has very little to offer. We fill a gap left after diagnosis and initial treatment when most people with MS are cast adrift.”

There are now more than 50 therapy centres across the UK, each independently run by volunteers as an individual charity, with trained and accredited staff providing therapies. They receive some funding from local NHS boards, but most are reliant on donations and fundraising activities. More than 15,000 people use the MS therapy centres each week.

Henry Ettinger, who has had MS for 11 years, has regular physiotherapy sessions at the Harrow MS Centre. “It’s very cheap and better than the physiotherapy I had privately. The difference is that at the therapy centre they really know about MS and they really care,” he says.

CARERS

Everyone who has MS is entitled to an assessment of their needs and means by their local authority social services department, to see if they’re eligible for social care. Carers are also entitled to an assessment but, according to the MS Society, fewer than half of those who want an assessment are offered one by their local authority.

There are many types of support available from local authorities and several different ways to organise care, depending on individual circumstances and preferences.

There’s now a much greater focus on offering people more of a say in their own care. Direct payments, cash payments given by the local authority, can be used to buy the services you need, such as employing a personal assistant or paying for an agency carer to help with dressing, bathing and shopping, for example. Respite and residential care are also available.

Social-care services can also fund specialist equipment and small home adaptations up to £1,000, including providing hoists and bath seats, or installing wheelchair ramps.

“Social care can provide people with MS practical support to help them remain independent and lead a fuller life,” says Sue Allison, the MS Society’s strategic lead for carers. “It can also provide vital help for family members and friends who care for them, by providing tailored information and support to meet carers’ own needs. Sadly, however, not everyone is able to access the care and support they require, and there are clear local and financial divides in the support that is on offer.”