GP management of MND

Motor neurone disease (MND) is a progressive and ultimately fatal disease that results in degeneration of the motor neurones, or nerves, in the brain and spinal cord.

GPs and others in the primary care team can make a great difference to the quality of life of people with MND, with timely care, support and symptom management.

Working with the specialist team

Where a person with MND is being seen regularly by a neurologist, a shared-care approach may be agreed between the neurologist and GP. This is particularly important where the neurologist is based some distance away and access becomes increasingly difficult as the disease progresses.

The GP is responsible for liaising closely with and, in some cases, co-ordinating the professionals currently involved in the care of the person with MND. The GP may work in liaison with an MND care co-ordinator, who may be based in an MND care centre or network.

Onward referrals

While the primary healthcare team may be able to meet some of the needs of the person with MND and manage many of their symptoms, the input of other health and social care professionals is vital to the care and support of people with MND.

The GP may act as the gatekeeper to other services, referring to appropriate specialists in the multidisciplinary team.

Treatment for MND

Riluzole is the only licensed drug available in the UK that prolongs life. Clinical trials have shown that, on average, it extends survival by around three to six months if taken for 18 months.

Its benefit does not show in tests of improved muscle strength. Instead it seems to reduce, on average, the rate of decline of function in MND. People with MND who take riluzole should be made aware that they will not feel any stronger when they take the drug.

Generally a hospital consultant will assess a person’s suitability for riluzole and prescribe the first course of the drug.

After this, the GP and specialist should agree a shared-care protocol, under which the GP issues repeat prescriptions. In a few areas however, the prescribing and dispensing of riluzole is undertaken by the specialised centre throughout the patient’s illness.

Normal baseline blood test should be undertaken initially, then monthly full blood count and liver function test for three months, followed by three-monthly for the first year, and annually thereafter. Responsibility for prescribing and monitoring should be made clear in the protocol.

Riluzole is available in tablets in generic or branded form (Rilutek). A liquid form is also available (Teglutik), which may be easier for some people with MND to swallow.

Symptom management

Sometimes, when people are told there is no effective curative treatment for MND, they interpret this as meaning that nothing can be done. Some will struggle on without asking for advice and treatment for symptoms, which could alleviate discomfort. They should be encouraged to talk about the symptoms they have and the potential treatments and therapies available.

Read more about specific symptom management in the section:

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262