Specialist Neuromuscular Care and Treatments

Rachael Maskell Excerpts

Tuesday 15th December 2015 Westminster Hall

[Rachael Maskell (York Central) (Lab/Co-op)]

It is a pleasure to serve under your chairmanship, Mr Brady. I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on speaking with such passion once again about her constituent and neuromuscular disorders. Such disorders often do not receive the profile of other medical conditions, yet for each of the 70,000 people affected, they are all-encompassing. I want to talk about a range of services and the challenges within them. I recognise that the conditions affect adults as well as children. I declare my interest as a physiotherapist who has worked in this field in the NHS for 20 years and is registered with the Health and Care Professions Council. I want to examine three themes: specialist services and how they are delivered; transition; and a timely response at the time of need.

I will deal first with specialist services. A multidisciplinary team is essential for delivering services to people with neuromuscular disorders, but access can often be challenging. District hospitals have teams of staff who specialise in paediatrics, neurology or other fields, but those people might not have the specific skills that are needed when dealing with neuromuscular disorders. Practitioners are practised in the principles of such conditions, but might not be as familiar with particular syndromes, given that there are so many—60 or more, as we have heard. This situation is likely to be exacerbated in the community when general practitioners and community physios do not have the specific skills, so it is important to ensure that people with these conditions can access those with the right skills who understand the pathology of the disorder and the specialist treatment that is required.

For instance, there are two specialist centres in London and one in Oxford for the whole of the south-east, so people have to travel vast distances to consult a specialist team. Owing to the nature of their disability, that can be very challenging, and the centres can even prove to be inaccessible, especially as their disease advances. How do we bring specialist services to those with neuromuscular disorders? How do we train staff to provide optimum care in the community, and how do we provide a rapid self-referral service when that is needed?

If I take muscular dystrophy as an example, paediatric patients in York benefit from Leeds general infirmary’s outreach service. That provides an opportunity for families to meet specialist practitioners but, obviously, some have to travel to those services. Will the Minister ensure that funding for that outreach hub-and-spoke model of service provision will continue and that clinicians will be able to travel to deliver their services, either individually or as a team?

It is important that services are placed in appropriate locations. For example, if a patient will benefit from hydrotherapy, we need hydropools to be available. Anisa Kothia, a member of the York muscle group, has a son, Yusef, who has Duchenne muscular dystrophy, and hydrotherapy is a vital component of his treatment. It relaxes his muscles so that his limbs can be taken through their range of movements, and the buoyancy of the water helps his movement. Will the Minister support a national review between the Department of Health and the Department for Communities and Local Government into hydrotherapy provision and ensure that any deficits are addressed?

Ongoing services rely on clinicians with less of a specialism, however, so that requires professionals to be trained and the provision of regular updates, which is why Gita Ramdharry, associate professor at St George’s, University of London, and Kingston University, has been working with Muscular Dystrophy UK to develop new online physiotherapy training. Will the Minister set aside resources to ensure that we can have specialist online training to equip professionals to provide the optimum treatment? Obviously, more specialist care training is also needed which, for physio, can be very hands-on.

I have had discussions with senior clinicians in other fields about global medical education. I think that that is relevant for neuromuscular disorders, because such disorders often require a global view that enables recruitment from around the world to participate in webinars, to examine case studies and academic papers, and to demonstrate learning by making a submission. We need to take medical training to another level, so will the Minister look at that more deeply, particularly with regard to neuromuscular conditions?

Before I move on, I want to highlight that much of the care for long-term progressive conditions is provided by the family. Good self-management is key, as Labour’s expert patient initiative has proven. If the professional knows the patient and their condition, the treatment will be optimal and will provide the best support. For example, a chest infection often accompanies a neuromuscular disorder, and a chest physio who knows the patient will know how best to support sputum clearance with a combination of the best postural drainage, manual support, and expectoration or suction techniques. Knowing exactly what the patient needs is critical, and can be life-saving.

All physios have the competencies required to treat a patient, but knowing the individual can make the difference. Rapid access to services can be transformative, and self-referral is very important, so will the Minister ensure that all services provide rapid-access routes to the appropriate clinicians and that all patients can self-refer, rather than having to go through the normal access channels? In north and west Yorkshire, we have only one neuromuscular care adviser to cover more than 3,500 adults and children. Will the Minister recognise the need to provide additional professionals in that role, including in north Yorkshire?

I have previously talked about the need to review the transition between child and adolescent mental health services, and adult mental health services. We should do the same for neuromuscular disorders, because using someone’s age as a measure is arbitrary. The pathology of Duchenne muscular dystrophy is more likely to be understood in paediatric services than adult services, owing to the number of children who, sadly, still do not make it to adulthood. A person’s medical team and physios know that individual and know how to progress their treatment. It is entirely arbitrary and nonsensical that someone’s birthday should determine that they have to transfer to another team.

Continuity of service provision is important. The condition of those who do reach adulthood is often at an advanced stage, so they need continuity. The findings in the field are that young adults are often lost in the service and then re-emerge later with problems that were preventable. Will the Minister take a serious look at the interface between paediatric and adult services right across the Department of Health, and particularly with regard to neuromuscular disorders, because surely specialism should override age?

We should be making a timely response to need. A worsening situation has been observed across the spectrum of neuromuscular disorders. It has been seen by clinicians in practice, and now constituents are writing to me about it. Orthotics, wheelchairs and equipment must be in place when they are needed. Infants and children grow, and disease processes may degenerate, so the combination of the two means that expediency is important. Patients are waiting far too long for appropriate equipment, and that is essentially an issue of under-resourcing and poor prioritisation.

If someone is measured for a chair, they need that chair, but people are waiting month upon month before their chair arrives. While they are waiting, they will be positioned inappropriately and might not even have enough support for their frame. That can exacerbate pain, as well as compromise a patient’s musculoskeletal situation and, dangerously, their respiratory function. There is absolutely no excuse for that. When a chair arrives, a patient needs it, so we need to ensure that we get the right equipment in the right place at the right time.

Planning for what equipment will be required is part of the management process, because people must always be prepared for the next stage, and the outsourcing of services has made the situation far worse. With life-limiting conditions, there is no time to wait. Will the Minister agree to carry out an urgent review of the situation? Will he ensure that, starting on 1 April 2016, there will be a waiting-time marker for the renewal and provision of equipment so that the time between the initial request for an assessment and the patient receiving the equipment is measured?

For someone with a rare condition, their future depends on the whole NHS and care service working around them to provide optimum support. I have not touched on research and pharmaceuticals, nor on advances in science, but there are things that can be done immediately that can really change someone’s outcomes. We need the best provision and to give individuals hope to ensure that we can extend their life and improve their quality of life. I look forward to hearing the Minister’s response.