Specialist Neuromuscular Care and Treatments

Madeleine Moon Excerpts

Tuesday 15th December 2015 Westminster Hall

[Mrs Madeleine Moon (Bridgend) (Lab)]

I want to speak not so much about Duchenne muscular dystrophy as about Parkinson’s disease and motor neurone disease—particularly the latter, which is also a neuromuscular condition. I will consider the problem of getting appropriate diagnosis and in-care support from neurologists. That is critical. We have already heard about the difficulty that those living in the wrong part of the country have in obtaining a quick diagnosis and the right support as they progress through the condition.

Neurological disorders account for up to 20% of acute medical admissions, and there are more than 60 different neuromuscular conditions. I was helped to understand the patchwork problem that people experience in getting access to neurological advice, support and guidance by a report commissioned in 2014 by the Association of British Neurologists. With 60,000 to 70,000 people in the UK living with a neuromuscular condition, there is considerable pressure on neurologists, and on specialist diagnosis and support. In 2011, a joint report of the ABN and the Royal College of Physicians, “Local adult neurology services for the next decade”, recommended that all relevant patients be admitted to hospitals that had an acute neurological service led by consultant neurologists. We are nowhere near that position now.

In 2014 a survey by the ABN found that the likelihood of a patient with a neurological problem being seen by a neurologist varies dramatically depending on where they live. The availability of a neurological review varied according to the type of hospital the patient was admitted to—whether it was a neuroscience centre, a neurology centre or a district general hospital, with or without neurological support. It was significantly better to be seen at a neuroscience centre, where there was support on 91% of days. Those who went to a neurological centre got support from a neurologist on only 80% of days. District general hospitals with a neurologist based at them had access to a neurologist on only 58% of working days. In contrast, access for patients at district general hospitals with no resident neurologist was available on only 32% of days. That is totally unacceptable, when we know that access to such neurological support dramatically changes the impact on a patient; there is an effect on their capacity to continue their life, and on their prospects of being discharged from hospital with a good quality of life.

I am concerned about the fact that access to CT and MRI imaging varies between hospitals. MRI was available 24/7 at only 30% of sites in the UK. The 2014 study identified a wide variation in access to specialist services for patients presenting with acute neurological disorders. As liaison neurology services change the diagnosis and management of a high proportion of patients, improving outcomes and reducing length of stay, there is an opportunity to improve both patient care and cost-effectiveness.

The all-party parliamentary group on motor neurone disease recently heard emotional and dramatic evidence from Mark and Katy Styles. Mark worked in local government and Katy was a secondary school teacher before she gave up work to become Mark’s full-time carer. Mark has a form of motor neurone disease called Kennedy’s disease, which is slowly progressive and genetic, passed from mothers to sons. He lives in Canterbury, and they have to travel to University College hospital in London to see a neurologist. That is nonsensical. Support should exist locally, because his condition may soon deteriorate to the extent that he cannot access the neurological support that he and his wife need. When Katy was working, she earned £150 a day. She now gets £67 a week to provide the on-duty, 24/7 care that her husband needs. We must recognise the invaluable work of carers and ensure that they get the necessary support.

Some 30% of people with motor neurone disease will die within one year of diagnosis. It is absolutely critical that they get rapid access to help and support for their condition. I will not repeat all the words that have been said about access to wheelchairs, but I stress that if someone with MND has the wrong wheelchair, they may not be able to communicate that. An ill-fitting wheelchair causes acute pain, but MND sufferers rapidly lose their speech and the ability to move their hands and upper limbs. They cannot communicate that they are in pain or distress, so the provision of wheelchairs is critical.

The APPG commissioned a report last year called “Condemned to Silence” about access to communication support. The issue is not money, because the Government have put money in place for communication support; it is poor roll-out, and something must be done to improve it. I look forward to hearing from the Minister what steps are being taken to ensure that people are not condemned to die without access to communication support, which they need to talk to their loved ones and carers about their needs, and to avoid suffering the indignity of being unable to communicate if they are admitted to hospital.

I have two final points. First, access to care support is critical as conditions deteriorate. People cannot wait for further assessments, or be put on waiting lists for care support, when they often need double-handling care support. If people are not to be condemned to lie in beds, support must be available immediately. Access to hoists and high-low hospital beds is often delayed. We must get faster at providing them. Secondly, access to finance to research such conditions is vital if we are to give families hope, and a sense that time and research will give them—and perhaps family members, who may inherit a condition—a better life in the future.