Health: Neurological Conditions

Baroness Finlay of Llandaff Excerpts

Monday 11th October 2010 Lords Chamber

[Baroness Finlay of Llandaff]

My Lords, I am sure that all patients with chronic neurological disease and the allied healthcare professionals who look after them would join me in thanking the noble Baroness, Lady Gardner of Parkes, and congratulating her on securing this important debate. I have to declare my interests as president of the Chartered Society of Physiotherapy, as patron of the Motor Neurone Disease Association, as patron of MS Society Cymru and as a clinician with responsibility for palliative care services in Wales, where we have recently instigated consultant and physiotherapy posts to lead on co-ordination of care for young people’s transition from paediatric to adult services.

As the Every Child Matters report, Transition—Getting it Right for Young People, points out, it is those with neuromuscular conditions who are the worst catered for. They feel as though there is an abyss when they go from children’s to adults’ services. Young adult disability teams are no more expensive than the ad hoc services that they often encounter. This debate is timely because the changes in the NHS present a real risk to the multidisciplinary specialist teams that are key to delivering high-quality care. It is cost-effective care when the teams work well, but given the new commissioning arrangements, I ask the Minister how the Government will ensure that the multidisciplinary teams have the relevant allied healthcare professionals as core members of the specialty team for these patients. These patients in any one diagnostic group with neurological conditions are not in high numbers on a GP’s list. They are not a volume problem in primary care. They have not been subject to government targets and are not at the forefront of commissioners’ minds. They are too dependent to be able to speak up for themselves, and their families are too occupied with care to have the spare time and energy to find out what they should be getting and call for it.

In the short time that I have, let me focus on a specialised area of allied healthcare professionals’ work—the management of failing respiration in patients with progressive neuromuscular disease. As respiration fails, patients do not sleep well, wake with a headache, feel muzzy, function less well and are less likely to work. That is because their lower respiratory effort during sleep means that carbon dioxide levels rise rather than being exhaled, as happens in normal deep breathing. Early non-invasive ventilation at home overnight allows the patient to have good overnight oxygenation, lowers carbon dioxide levels, and the patient wakens refreshed. This means that they can continue to function in society, and that includes working. Indeed, it is no secret that some Members of this House depend on night ventilation and contribute enormously and invaluably every day here in this Chamber.

In acute episodes of respiratory failure, the early intervention of appropriate professional help saves money and lives. Early non-invasive ventilation, or NIV, has better outcomes than intubated ventilation because it has a lower complication rate, particularly a lower infection rate. It is a technique that depends on expert physiotherapy. NIV corrects blood gases, including oxygenation, in about 70 per cent of these patients, so they do not need to go on to be intubated. Intensive care costs about £2,000 a day; 25 days in ITU costs more than the salary, including on-costs, of an allied healthcare professional for a year. It does not make sense not to have them locked in as core members of the team. It is a waste of money not to have them there.

The NICE guideline on NIV for motor neurone disease lists the core members of team as a specialist respiratory physiotherapist, a speech and language therapist and a respiratory physiologist—with others added to the team when needed. They need early contact with patients and they must be core members of the team to establish a baseline and inform patients of what lies ahead. It is often the physio who allows early recognition of symptom deterioration and the functional impacts on activities of daily living. Proactive intervention on advice on seating, limb supports and so on pays for itself over and over again. The physiotherapist can follow up on patients, provide continuity of care and free up consultant time for complex diagnoses. He or she can also allow more time at the point of interaction when people are devastated by a new diagnosis.

The churn that the noble Lord, Lord Alderdice, described occurs just as much with nurses and doctors, so competent teams are absolutely key. A proper team meets regularly, reviews patients together, teaches across the boundaries of the disciplines and develops cross-over skills. However, the psychosocial support of a proper multidisciplinary team is a major part of the specialist role. A Dutch study by van den Berg and colleagues showed that patients seen in an MDT—a multi-disciplinary team—had better aids and appliances, better swallowing support and better quality-of-life scores. The most pronounced differences between them and those with motor neurone disease seen in an ordinary neurology service were in the domains of social functioning and mental health. This was through the better implementation of supportive treatments, better nutrition and better psychosocial support. The Italians found that those seen by specialist teams had 75 per cent fewer acute hospital admissions, and, even if admitted, the length of stay was reduced by a half. The service proved cost-effective to the patients and to the community as a whole. I am quoting from a paper that they published. A Cochrane review of non-invasive ventilation in respiratory failure shows the same benefits of the multi-disciplinary team—fewer infections, better weaning off ventilation, lower mortality and shorter hospital admissions.

I am indebted to the Lane Fox unit at St Thomas’s for allowing me to access its data over the weekend, which support the cost efficacy of a highly specialised centre with a full multidisciplinary team. Such a tertiary centre can link to other units, drive up standards of care and ensure better care delivery nearer to patients’ homes. Even if highly specialised commissioning is done centrally, how will GP consortia know what to commission to ensure cost efficacy from local neurological services? It is at that level that often the really tight multidisciplinary team is not in place. The Motor Neurone Disease Association, in its “Year of Care”, provides excellent information on both the interventions and the costs, but that needs to be taken up at a local level.

Before I finish, perhaps I may turn to the more generalist services. It is the OT and the physio who will get the patient home quickly through improved functioning and appropriate support and aids to avoid pressure sores. Let us not forget that pressure sores can kill patients. It is these professionals who teach families how to support patients safely as they move. It is the physiotherapist who will spot early deterioration in neurological function. For those with stable but severe brain injury, physiotherapy and occupational therapy have led the way in helping people to get back to functioning well in spite of their disability, supported by speech and language therapists, who are in terribly short supply.

For those with a serious disease, nutrition is absolutely key to recovery. Dietetics are complex when patients need assisted feeding. No one should forget the key role of the speech and language therapist in re-establishing communication whenever speech is impaired and in ensuring effective safe swallowing, avoiding aspiration pneumonia. None of these roles can be fully undertaken by healthcare assistants or nurses. They do not have the training to give them the competencies required. However, perhaps I may give a St Bartholomew patient the last word. He wrote in a letter to his consultant at the unit:

“I really can’t overstate the benefit to me of this integrated multidisciplinary approach. It enabled me to play a major part in managing my own condition, with the minimum of time off work. It gave a richer and more thorough diagnosis than could be done by the clinicians working separately and it gave me confidence in the clinical team.

I have subsequently thought about the process from the hospital’s point of view. Some major problems were managed better than I have previously experienced, in fewer appointments and in a shorter time than using the traditional interdepartmental referral process. It has involved specialist clinicians from the outset. I could witness the energy, enthusiasm and collaboration of the clinical team. I can’t help thinking that this is much more cost-effective and economical than the old ways of doing things”.

And indeed it is.

Therefore, I urge the Government to lay out clearly the parameters of a modern service—the minimum required for a service so that the tariff is fixed appropriately. If that is not done, the allied health professionals will be the first to be skimmed off and it will be a false economy. It will rebound with complex admissions that could have been avoided, and let us not forget the cost of those admissions to the NHS.