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Baroness Gardner of Parkes
To ask Her Majesty’s Government what is their assessment of the role of allied health professionals in maintaining the health and social well-being of people with long-term neurological conditions.
Baroness Gardner of Parkes
My Lords, the notice of the opportunity for this debate was very short, but the topic is an important one and I am delighted that we are debating it this evening. I thank those who are speaking. I know that in some cases they have had to alter their arrangements to enable them to be here and that many others who also have a particular interest in or knowledge of the subject cannot be here today.
I start by giving noble Lords the Royal College of Physicians’s definition of long-term neurological conditions:
“Long-term neurological conditions (LTNCs) form a diverse set of conditions resulting from injury or disease of the nervous system that will affect an individual for the rest of their lives. They include: sudden onset conditions (eg acquired brain injury of any cause (including stroke), spinal cord injury) intermittent conditions (eg epilepsy) progressive conditions (eg multiple sclerosis (MS), motor neurone disease (MND), Parkinson’s disease (PD) and other neurodegenerative disorders) stable conditions with/without age-related degeneration (eg polio or cerebral palsy). Taken together, LTNCs are more common than most clinicians realise. Some 10 million people in the UK are living with a neurological condition which has a significant impact on their lives, and they make up 19% of hospital admissions”.
Many of us would be glad to learn the precise definition of allied health professionals. There are 15 health professions registered with the Health Professions Council, including speech and language therapists; radiographers; therapeutic radiographers; and prosthetists and orthotists, who mainly make artificial limbs—two different words but the same profession. There are also podiatrists; some still use the word “chiropodist”. A podiatrist is principally concerned with keeping patients steady and supported on their feet. The aim is to reduce falls, which are a main cause of serious injury and hospital admission for people with long-term neurological conditions. It is interesting to learn that Botox injections in the ankle and foot may help patients with cerebral palsy.
There are also physiotherapists. Some call themselves chartered physiotherapists, but they are the same profession whether they are chartered or not: it is just a distinction. There are paramedics. Television has made us all familiar with paramedics and it is interesting to see how their roles have developed and are constantly expanding as new treatments are discovered and put to use.
There are also orthoptists, who look after eye health; occupational therapists; dieticians; art, music and drama therapists; hearing-aid dispensers; practitioner psychologists; and clinical scientists. A clinical scientist oversees specialist tests for diagnosing and managing disease, advises doctors on using tests and interpreting the data, conducts research and devises new therapies.
Each of those professions plays a significant part in the care of long-term neurological conditions. Often, their work is interrelated. It is always to the benefit of the patient and makes the difference between maintaining quality of life and losing that quality. Usually, a multidisciplinary approach is needed and used.
Many Members of the House will know of my personal interest, but I will formally declare it again. My eldest daughter, Sarah, was diagnosed with multiple sclerosis at the age of 21. Now, 30 years later, she continues to make the most of life and plays a full part in the community. She is a patron of the Multiple Sclerosis Trust and only this year became a council member of the Royal Horticultural Society. She knows, as do all of us in her family, the real difference that allied health professionals have made in her life. Under the care of the National Hospital for Neurology and Neurosurgery, she has an excellent consultant neurologist, but the practical help and advice for everyday life is given by allied health professionals.
AHPs are important to people with long-term neurological conditions, as they provide a vital input throughout the whole disease process—I emphasise the whole disease process—from early intervention to prevent disability, through the management of complex symptoms, to end-of-life care. For the National Health Service, they provide effective management of admission and discharge from hospital, thereby minimising hospital admissions and reducing length of stay. Maintaining people at home, thus preventing in-patient admissions, is very cost-effective for the National Health Service; £2,000 is the minimum cost of any admission. The use of specialist expertise to manage specific symptoms including those related to cognition, fatigue, pain, spasticity, speech and swallowing improves quality of life for the person with the condition, enabling people to maintain important life roles, such as working or looking after their family, reducing the cost to UK taxpayers. Interventions also prevent additional complications through treatment.
Allied health professionals enable people to self-manage and to remain within the community, again reducing national health costs. Allied health professionals bridge the gap between health and social services, working with people in home, work and leisure environments. In the current climate of wishing to ensure that health and social services are working together, the allied health professionals are vital. They are well placed to work with the new GP consortia to engineer service redesign and provide leadership for services. Multidisciplinary teams can provide a holistic and co-ordinated approach to intervention.
Professor Alan Thompson at the National Hospital for Neurology and Neurosurgery at Queen Square stated that,
“any model of care for MS has to have both breadth and expertise to address the wide range of problems and the flexibility to cope with variability, unpredictability and changing pattern of need”.
I believe that applies to all the long-term neurological conditions set out in the definition from the Royal College of Physicians.
Physiotherapy is probably the best known of the functions carried out by the allied health professionals. Although familiar to all, it is not always appreciated that benefits are not only physical but psychological and socio-economic. I was rather shocked to learn that there is not a single specialist physiotherapist for the 4,000 multiple sclerosis cases in Northern Ireland, and I wonder why that is so. For people with motor neurone disease or multiple sclerosis, physiotherapy cannot regenerate tissue that has been destroyed, but works to maintain functional strength, endurance and independence. In Parkinson’s disease, physiotherapy helps to maintain general levels of fitness and enable patients to maintain independence for themselves. It helps to prevent or manage falls, for example, by working on specific balance training. A physio usually works with an occupational therapist to look at ways in which to free the home environment of hazards. The Parkinson’s Society refers to the vital role of allied health professionals in neurology in treating the individual patient and not just the condition; it is important that each patient receives the therapies that they need at the right time to ensure the best management of their condition. That will prevent unnecessary deterioration and reduce the burden on the health and social care system.
Radiographers are necessary in diagnosis to provide accurate imaging examinations. The importance and limitation of the short window wherein a scan can benefit a person who has suffered a stroke has often been discussed in your Lordships' House. Speech and language therapists not only help with speech—a most necessary task to restore confidence after a stroke. They can also help patients with swallowing difficulties, which can occur in various conditions due to changes in mouth secretions. Podiatrists provide essential assessment and foot care for a wide range of patients, including those with cerebral palsy and peripheral nerve damage. Those podiatrists specialising in biomechanics are particularly relevant to the elderly. Dieticians are the only qualified health professionals who assess, diagnose and treat diet and nutrition problems at an individual and wider public health level. Their input is of great value in hospitals, care homes and the wider community.
Each of the allied health professions plays a vital part in the treatment of people with long-term neurological conditions. I have spoken about some of these professions, but my speaking time is over. I pay tribute to all for the wonderful job they do and recognise that it is the working together of those professions that makes them so effective. As long as people have these neurological needs, they will continue to need and value the great work being done by the members of the allied health professions. The points I have made summarise why all long-term neurological conditions are difficult for the NHS to manage, but the allied health professions are having a real impact.
I have not spoken about dementia but I am delighted that the noble Baroness, Lady Greengross, is here and I hope that she will do so, as it is so important in our lives. I would be glad to hear the Minister confirm that he understands the importance of the role played by the allied health professionals and that their work with patients will continue.
Lord Alderdice
My Lords, I am grateful to my noble friend Lady Gardner of Parkes for obtaining this debate, because the conditions which we are considering are not glamorous. They are not the kinds of thing that excite public interest all the time. It is important that there are thoughtful, committed individuals like my noble friend who, from time to time, bring this back to your Lordships’ House to help us focus on this important area of medicine and health and social care.
I shall pick up from where she finished her speech: paying tribute to those allied health professions who are involved in the care of chronic neurological disorders. It is of course difficult to deal with any kind of serious illness, but particularly when you know that these conditions are chronic and are, in many cases, simply not going to go away. For those of us involved in medical care, a degree of excitement is present when you see a problem, can get involved and know what to do to bring a good outcome. You can receive great personal satisfaction from that, but there is not that excitement when the conditions are generally not of that kind. You know that a long-term, dogged commitment is necessary. I take the opportunity of paying tribute to those allied health professionals who continue on with this kind of work not just week after week, or month after month, but year after year after year. It is extremely important.
From a medical point of view, these conditions induce a certain amount of appropriate humility because the neurological conditions in general are not ones that we know very much about how to cure. We can often diagnose them, sometimes rather accurately, and do lots of tests to demonstrate all the elements of them. Yet at reversing or curing them—relieving the patient completely of the problem—we are not so good. In fact, the truth is that the amount of useful work we can do in diagnosis and treatment is much less than the value of the management that can be provided over a long term by allied health professionals.
In many ways, while is important to have some of the time and expertise of the neurologist it is often more important to have the long-term commitment of the physiotherapist, who is able to help you manage the problem—and here is one of the difficulties. While physiotherapists are vital, there is what we have come to describe as a churn or turnover of them. It is fairly inevitable to some extent, but the long-term care is difficult if you have a lot of turnover. Can my noble friend the Minister say anything about how we can encourage the long-term continuity of care in nursing—particularly community nursing care—and physiotherapy, rather than the rather fast turnover that there sometimes is?
The second thing I will say is about not just the importance of physiotherapists, but the significance of other allied healthcare professionals. It is becoming clear to us that, while it may be more scientifically and technologically interesting to do lots of complicated, high-tech, expensive scans, things like art therapy, music therapy and hydrotherapy—physiotherapy exercises in a pool—often are much more important. They make a difference to people. For example, we know from recent research that people who have had strokes and have music therapy often recover more quickly and more completely than people who do not. We do not always know why, but it seems that some of these other professions are able to help.
The Minister would be astonished if I did not raise the question of counselling and psychotherapy, and of the importance of the input of those professions to those who are suffering from chronic, long-term conditions and to their partners and families. Chronic conditions affect not just the person but everyone with whom they live, and sometimes counselling of a didactic or emotional kind is helpful and necessary to sustain the person with a chronic disorder and their family and partner or spouse.
The noble Baroness, Lady Gardner of Parkes, mentioned music therapists and other health professionals. She rightly said that a large number of them are already regulated by the Health Professions Council. As the Minister knows, that is not true of psychotherapists and counsellors. I will use this opportunity to ask him—because I never fail to use such an opportunity—how we are getting on with the question of regulation, because as we move toward more decisions being made at a local level about which services to commission, commissioners quite properly will want to see regulated professions employed. If we do not have regulation of psychotherapists and counsellors for these kinds of condition, commissioners are likely to be wary of employing them—understandably so.
The third and final area that I will touch on is what is sometimes described as multidisciplinary teamworking. It is clear that an enormous number of people are required to be involved in managing these conditions. The Motor Neurone Disease Association calculated that on average 18 healthcare professionals were involved with any patient. Some of this is terribly important and valuable. There are lots of areas of life that are adversely affected when somebody has a chronic, long-term neurological condition. However—this is a delicate matter, not particular to these disorders—we must be careful sometimes in the health service that we do not simply make yet another referral and add on yet another person who does not necessarily operate with the others as a team. When 18 people are involved, it is not a team but a lot of different professionals.
I found in my own work, until recently, that sometimes I would suggest an out-patient appointment to a patient and they would say, “I’m sorry, I’m too busy to come along that week because I have appointments every other day”. That is not terribly helpful. The Motor Neurone Disease Association rightly says that it is very important to have a key worker to whom the individual patient refers, and everything else goes through them. In medical terms, this is the general practitioner. We do not like referrals being made without the general practitioner being informed because they can act as a gatekeeper. However, it is also important for allied health professionals that one of them—preferably one who knows a good deal about the disorder concerned—acts as the key individual, and that everyone else relates to them. If not there is a temptation, when a patient comes along with a chronic condition and you desperately want to help but cannot do much, to make a referral, sometimes in the desperate hope that somebody else will be able to contribute something.
However, we must not forget that every referral is a resource taken away from another patient; so encouraging colleagues to think about whether yet another referral is necessary, or whether more collegiate teamwork is possible with those who are already being treated, is a very difficult area that I do not expect my noble friend to be able to say a great deal about. However, perhaps he will take this genuine problem back to his colleagues: the notion of multidisciplinary teamworking, which is excellent and important in all these areas, becomes a lot of different people working in a not necessarily terribly co-ordinated fashion. Maybe at a strategic level we must think about some kind of guidance as to the difference between a bunch of people on the one hand, and a multidisciplinary team on the other. Is there an optimum size for this kind of input?
I finish, as I began, with a tribute to those involved in this kind of work. It is by no means easy. It requires strength of character and a commitment to the care of people that is quite remarkable. We are profoundly fortunate in this country to have so many people who are prepared to undertake this, not for a day or a week, but over a long and committed professional career. I am honoured to pay tribute to them.
The Countess of Mar
My Lords, the noble Baroness, Lady Gardner of Parkes, has chosen an appropriate moment to table this Question and I am grateful to her. I declare an interest, as I have a diagnosis—finally—of organophosphate poisoning leading to autonomic dysfunction. I am a patron of several charities and groups that represent the interests of patients with myalgic encephalomyelitis, also known as ME or CFS, but which I will call by its common abbreviation, ME. I am also chairman of Forward-ME.
Arising from my own illness and the battle that I and others had to get the toxicity of the once-ubiquitous organophosphates recognised—a battle that I am sure the Minister well recalls—I became interested in other medical conditions, such as fibromyalgia and Gulf War illnesses, for which there was no diagnosis or treatment, let alone recognition. Foremost among these is ME. ME has been categorised as a neurological condition at least since 1968. It is recognised as such by the World Health Organisation and the United Kingdom Government. However, for all these years, sufferers from this awful debilitating illness have been ignored, derided and mistreated. The soubriquet “yuppie flu”, acquired in the 1970s, has stuck in the minds of the public and, unfortunately, in the minds of far too many members of the medical and allied health professions. Too often I hear statements such as: “Sometimes I felt that the therapist did not appreciate how physical and biological the symptoms are. She said she understood but then suggested that a lot could be cured just by thinking differently. I don’t think she really appreciated how severe the symptoms are, or that when I said I couldn’t do something I really meant that I couldn’t do it. She also talked a lot about needing to get fitter, which I thought completely missed the point”.
Many thousands of peer-reviewed scientific papers from researchers around the world demonstrate that ME is a physical disease which has endocrine, immune and cardiovascular effects, as well as neurological symptoms, albeit with some of the psychological aspects common to many chronic diseases. It is distinct from chronic fatigue which is a symptom of many diseases—depression or cancer, for example. Despite this, there is a school of thought, dominant through the last three decades, that this is a psychosocial behavioural problem, easily dealt with by cognitive behavioural therapy and graded exercise. On many occasions I have spoken about the failure of successive Administrations to recognise ME for what it is: a chronic illness with fluctuating symptoms of unknown or uncertain origin and of variable severity. There are theories that it has its source in a viral or bacterial infection that persists and eventually affects all the major bodily systems. Others think its source may be environmental—caused, for example, by those ubiquitous toxic chemicals such as OPs, which are, incidentally, designed to attack the nervous systems of their target species. The simple answer is that we do not know.
In the UK, funding for research into ME has concentrated on its psychological aspects. There is a school of psychiatry determined to claim the condition for its own, both in the UK and internationally. After many years of working in this sphere, I have observed the means by which any valid arguments for a biological cause are mocked and eventually overwhelmed by the noisier medical opposition. They ignore internationally recognised science on the grounds that it is not scientific. They find every reason to reject small-scale scientific research projects conducted in the UK because they are not representative. Members of their own profession who have a considerable degree of success in treating patients with ME are hounded out of business. By writing numerous papers which, of necessity because there is no one else to do it, are peer-reviewed by their colleagues, they appear to have proved that there is no need for further research and that the doctors responsible for diagnosing and treating ME do not need to conduct any more than the basic range of tests on their patients.
The previous Administration did try to help patients with ME. The Chief Medical Officer commissioned a report, published in 2002, on the subject. It recognised that ME is an illness that is as chronic and disabling as MS. It recognised the shortfall in research and in NHS provision, particularly for children. The Chief Medical Officer recommended the setting-up of specialist centres to diagnose and treat people with ME—£8.5 million was allocated for the purpose. There developed small pockets of excellence where patients were pleased with the provision. These tended to be fine for patients who were able to get to the centres, usually hospital-based, but for the 25 per cent of patients who are housebound and, worse still, bed-bound, there was little help. Some health authorities were so slow that their projects failed to get off the ground before the funding had dried up; others, based on psychiatric units, were regarded with suspicion by patients. What I am saying is that, because of the way that people have behaved over this illness, patients with ME are not getting access to ancillary helpers in the NHS.
Two later reports, the latest published earlier this year by the All-Party Parliamentary Group on ME, of which I was a member, again highlighted the lack of NHS provision for patients with ME. Both reports stressed the failure of the NHS to provide for children and the severely affected. NICE, in its CFS/ME guidelines, also recognised the variable severity of the illness and the lack of treatments available. It recommends that treatment should be tailored to the patient with the patient’s consent and that allied health professionals such as physiotherapists and psychologists must have knowledge of ME and be experienced.
Current NHS treatments depend upon a multidisciplinary approach. I know from experience that a hospital referral can be very unsatisfactory unless the consultant has an open mind and looks at more than just one “bit” of a patient. All too often when a patient fails to respond to the recommended treatment, he or she is blamed for the failure and a psychiatric referral ensues. There is no passing patients on to people who might be able to help them, such as cognitive behaviour therapists. There are an estimated 250,000 people with ME, most of whom are treated by professionals with very little, if any, understanding of their illness. Since specialist services are inadequate, many patients are left to fall upon their own resources. Some are fortunate, such as the patient who said, “By understanding how I could approach my daily activities in smaller chunks and hence planning for this, including fun activities, I ultimately became stable and could build from there”, or another who said, “One-to-one supervision from a very skilled and experienced therapist kept me on track, pulled me up when I needed it and gave me encouragement. They listened to me, believed in me, reflected my progress to me at times when I couldn't see it”.
I cannot say how important being listened to and being believed are. I am pleased to see that the coalition intends that patients should have more say in the NHS provision of services. I also see that it is to discuss professional training with the royal colleges. However, until there is a cultural change among health professionals, patients with ME will continue to find it difficult to find help within the NHS. Until the professionals take time to listen to patients and to believe them, they will never develop the skills needed to enable them to help patients along the road to recovery.
I wish I had the solution to the suffering of people with ME. It seems that, no matter how often Ministers and senior officials confirm their acceptance of the seriousness of this condition, nothing will change until the culture both within and outside the NHS changes. I believe that in this particular case the patients, some of whom have experienced illness for decades while others have made excellent recoveries, have a huge amount of knowledge to impart. The Canadian guidelines to diagnosis and treatment of ME have, for reasons that have never been explained, repeatedly been rejected by health professionals and yet they are regarded by patients as providing the best course of action.
May I ask the noble Earl whether the coalition continues to accept that myalgic encephalomyelitis is a neurological illness as categorised by ICD10 G93.3? If he does, will he say how Her Majesty's Government will ensure that there is sufficient qualified medical and allied professional expertise to treat patients with illnesses such as ME with the effectiveness and dignity they deserve?
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.
Baroness Greengross
My Lords, first, I congratulate the noble Baroness, Lady Gardner. I found her initial comments, as always, very informative and very moving. I am so pleased that we are able to have this short debate.
Often allied health professionals are under-recognised but their role is absolutely key to the way in which patients, particularly those living with neurological diseases, are cared for. Many of them with progressive and incurable diseases such as motor neurone disease, multiple sclerosis, Huntingdon’s disease or Parkinson’s disease face very long-term physical and psychosocial challenges, which can last for years or decades with long periods of dependency.
The role of allied health professionals must be better recognised. They can ensure that people with a neurological condition receive adequate nutrition; that their communication skills are maintained; that cardiac and respiratory functions are maintained, as the noble Baroness, Lady Finlay, has identified; and that respiratory functioning, bowel motility and skin integrity can be dealt with. They often co-ordinate care within a multidisciplinary team, which is very important. They are also frequently the first contact practitioner who can access the range of care which a patient needs over a long period.
In community settings, hospitals, residential care or wherever, dieticians also have a key role to play. They can often prevent a problem that can cause significant complications, and can compromise quality of life and lead, as has been said, to considerable cost for the health and social care system.
I am privileged to head up a think tank, the International Longevity Centre, in the UK, which looks at the implications of demographic change and ageing on our society. The IRC has often tried to raise awareness among policy-makers and the general public to the risk of malnutrition and dehydration for many of the most vulnerable members of our society. In the next couple of months, it will publish work on the importance of speech therapists. From a summary of the literature, it is clear to me that the vast majority of policy initiatives relating to speech and language therapy focus on children and younger people, which is terribly important, but despite our growing ageing population only 20 per cent of speech therapists currently focus on older people. I hope that the Minister can look at this issue, as it demonstrates an imbalance.
The IRC will highlight the need for an increased number of speech and language therapists for older people with neurological conditions. I would also like to highlight, as has the noble Baroness, Lady Finlay, the importance of occupational therapists, who very often enable older people who have suffered a stroke or who have dementia to regain some of the skills they previously had in daily living. The importance of that cannot be overemphasised. I declare an interest as president of the College of Occupational Therapists.
Just because we cannot alter the disease progression of many neurological conditions, we must not assume that nothing more can be done. It is because of that inevitability that we must do everything possible to alleviate the symptoms and offer appropriate psychological and spiritual support to patients. Allied health professionals have a key role to play in that respect.
We also need to ensure that we adequately support this group of healthcare professionals. Some neurological diseases, particularly those that apply to older people, can evoke rather negative attitudes. That is perhaps because they are linked to our mortality—we would rather not think about them and rather that they went away. Given the growing number of people who suffer from dementia, it is important that we raise awareness of this type of condition across the sector. It is also important that those who work in the allied health professions have the basic training in dementia care, among other neurological conditions, and know how to manage these difficult diseases as they progress in the huge number of patients who suffer from them. Training in dementia care and in the management of dementia should form an integral component in all the training for allied health professionals and for their career development. We must recognise the crucial importance of their work and ensure that they can meet the difficult situations that they will face with appropriate skills, training and recognition.
Baroness Thornton
My Lords, I join other noble Lords in congratulating the noble Baroness, Lady Gardner of Parkes, on initiating this debate. I suspect that there would have been more takers for it had there been more notice, although it is clear that the quality of the debate has not suffered as a result. On balance, the fact that important issues are getting an airing because the Government do not seem to have got their head around scheduling legislation for the House is definitely of benefit to some of us.
I am grateful to the Motor Neurone Disease Association, Parkinson’s UK and the MS Society for their comments on this important issue. Those organisations and many others care about this issue with great passion and with great experience. It is my understanding that around 15.4 million people in the UK are living with long-term conditions and that of them 8 million have neurological conditions. I note that other speakers have given different figures, but it is a very large number and I am sure that the Minister will have the most up-to-date and accurate figures to give us.
I want to take a moment to look at the vital role that allied health professionals play in the care of those with motor neurone disease. The Motor Neurone Disease Association research carried out between 1996 and 2000 found that having a multidisciplinary motor neurone disease clinic extended survival for people with that disease by 7.5 months. We know that specialist MDT care can significantly improve the quality of life. The complexity of the symptoms presented by motor neurone disease means that a large number of health and social care professionals may be involved in the care of someone. It is common to have up to 18 professionals involved in caring for a person with motor neurone disease at any time. Therefore, examples of good practice in co-ordinating this care take a variety of different forms and different models suit different local situations. The models that work best for the people with motor neurone disease are typically those that involve a designated key worker—often themselves a clinical nurse specialist, a motor neurone disease care centre co-ordinator or other specialist clinician—co-ordinating care across different services. The key worker often achieves the best results by bringing together and co-ordinating a multidisciplinary team to care for the person with motor neurone disease.
That co-ordination of care and treatment is vital. If the treatment is poorly co-ordinated, untimely and without specialist knowledge of motor neurone disease, it can result in treatment being missed, the person’s condition becoming more acute more rapidly—in fact, the kind of issues that the noble Baroness, Lady Finlay, talked about earlier—leading to greater expense and suffering as more intensive treatment and care is then needed.
Parkinson’s UK sent me some case studies which definitely bear repeating:
“With occupational therapists, physios and speech and language therapists, it would be very beneficial to be able to access regular, routine follow-up rather than being ‘signed off’ at the end of a treatment”.
That was said by a person with Parkinson’s disease, who also went on to say,
“I have worked hard to get counselling with a qualified, experienced psychologist … my GP has been very helpful but the waiting time has been many months”.
Parkinson's UK conducted a case study into the value of physiotherapists in the system; as we have already noted, they provide a high-quality, cost-effective service, especially those who specialise in conditions such as Parkinson’s. They offer an immensely important service and patients can often see them in place of a medical consultant, which is a significant cost saving. According to one physiotherapist:
“Condition-specific exercise classes are a wonderful way of maintaining people’s fitness initially and building confidence to then carry on at a gym, or out with the family”.
There is no doubt that, as Parkinson's UK states, providing access to a range of therapies and other services is cost-effective. It helps people with Parkinson's to stay independent longer, preventing costly admissions to hospital and care homes. Existing clinical guidelines, including those from NICE and the royal colleges, of the various therapies recognise how important that is.
Allied health professionals must form part of a specialist, multidisciplinary Parkinson’s team that looks at the full range of therapies needed by someone with Parkinson's. In order to treat the individual patient, not just the condition, it is important that each patient receives the therapies they need at the right time to ensure the best management of their condition. This will prevent unnecessary deterioration and reduce the burden on the health and social care system.
The Multiple Sclerosis Society, along with many other organisations concerned with long-term neurological conditions, supported the NHS outcomes framework and believes that insufficient resources have been dedicated to the implementation of the NSF for long-term conditions, resulting in patchy neurological services across the country. The recent report, Half-way Through—Are We Half-way There?, which considers the progress of the national framework on long-term conditions, shows that there is still a great deal to do. I am anxious that the progress that has been made will be lost under the new regime proposed by the Conservative Government. The previous Government initiated the 10-year strategy and, in January this year, published what I thought was a great document about the commissioning of such services.
I have spent the past few months talking to organisations and individuals about what they think about the Government's proposals for the NHS and how those proposals might affect the issue with which they are concerned. I must say that great concern is being expressed across the piece. I went into some detail about the kind of integrated care required for those neurological conditions because it begs the question: how will it be maintained and developed under the new regime? That is at the heart of my final remarks.
I heard the Secretary of State, Andrew Lansley, on Radio 4 at the weekend saying that although people had raised justifiable questions in the consultation, he could not see that there was real opposition to the Government's proposals. He is behaving something like an ostrich, because every day there are more and more appeals to the Government to slow down. Doctors, nurses, royal colleges and many organisations concerned with things such as long-term neurological conditions are saying, “Please slow down. We are confused and anxious about what is going to happen to the issue with which we are concerned”. When the solution lies, as it does with long-term neurological conditions, in pathways dependent on teamworking across disciplines of health and social care, they are right to be concerned. It is a long process to secure the right services for people with long-term neurological conditions. How will that be maintained within the new structure? It is not clear where and how, for example, the care of people with motor neurone disease will be commissioned and how effective it will be. There are significant risks of deteriorating standards of care and spiralling costs if the wrong choices are made over the next few years.
In conclusion, it is clear that the work of allied health professions is integral to the successful care of and prospects for those with long-term neurological conditions. Organisations that work with those who have such conditions have a right to be concerned about where the funding for those conditions will sit. I note, for example, that in its submission on the White Paper one of them asked whether its condition would be commissioned at a specialist care level by the commissioning board or whether it would be done by GP commissioners, and how the integrated pathways will be assured under those circumstances. I searched the Department of Health website in vain for some enlightenment about those questions. Perhaps the Minister will be able to shed some light on them.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)
I thank my noble friend for calling this debate and for introducing it so authoritatively. As she indicated, this is a welcome opportunity to outline the valuable role that allied health professionals play in health and social care in delivering our ambition for world-class healthcare outcomes and, in particular, for people who have long-term neurological conditions.
First, let me set out some background about the allied health professions. They are a diverse group of 12 professions—in fact, three of the professions mentioned by my noble friend are, strictly speaking, not classified as allied health professions. These registered practitioners deliver high-quality care to patients across a wide range of care pathways and settings from public health through to recovery, rehabilitation, reablement and end-of-life care. Some of the most well known professionals are occupational therapists, physiotherapists, speech and language therapists and podiatrists.
Over 84,000 allied health professionals are working in the NHS in England and just under 2,000 occupational therapists are working in social services. From day one, these are skilled practitioners in their profession of choice. They assess, diagnose, treat and discharge throughout the care pathway from primary prevention through to specialist disease management and rehabilitation. They often work with the more vulnerable and marginalised in society. They treat some of the least recognised problems—for example, incontinence. I agree with my noble friend that their approach is very person-centred. Their particular skills and expertise can be the most significant factor in helping people to maintain their independence through physical and mental rehabilitation.
Long-term neurological conditions affect children, adults and older people. These conditions cover a wide range of care groups and include multiple sclerosis, motor neurone disease, Guillain-Barré syndrome, epilepsy, cerebral palsy and Parkinson’s disease. We know that an estimated 8 million people in England are living with a neurological condition. They account for approximately 20 per cent of acute hospital admissions. Neurological conditions are the third most common reason for seeing a GP. An estimated 350,000 people across the UK need help with activities of daily living because of a neurological condition and 850,000 people care for someone with a neurological condition.
Allied health professionals work with partners in social care, education and voluntary organisations to support individuals with long-term neurological conditions to manage those conditions and to support their carers to manage them. They focus on achieving clinical outcomes that are about maximising the individual’s functional abilities and participation in home, work and social life—for example, enabling a young mother with multiple sclerosis to manage the physical challenges of family life alongside the impact of the condition on mobility and other activities of daily living, or supporting a person with newly diagnosed epilepsy to return to work, often working with the employer in assessing the suitability of the work environment or facilitating a phased return to work.
People with long-term neurological conditions usually require the services of all the allied health professions at some point during the management of their condition. For example, a person with multiple sclerosis might see the physiotherapist for assessment, diagnosis and treatment of mobility problems and an occupational therapist for assessment, diagnosis and treatment of residual impairments impacting on activities of daily living and to be assessed for environmental adaptation in preparation for discharge. A speech and language therapist would assess, diagnose and treat swallowing and communication problems. The arts therapists would use psychotherapeutic interventions to gain insight into and to promote resolution of behavioural and emotional difficulties, such as depression.
When it comes to a health and social care model for long-term conditions, there are three levels. Allied health professionals work at all three levels and their impact is directed to keep patients in the lowest tier appropriate for their condition. Level 1 is self-management, with allied health professionals supporting individuals to take an active role in managing their condition. Level 2 is disease management and the focus for allied health professionals is preventing complications and promoting well-being. At level 3, an individual will have a case manager, who may be an allied health professional, to co-ordinate a multidisciplinary, multiagency care package to meet complex needs.
Perhaps rehabilitation and reablement is where the unique role of allied health professionals lies. It is important not just for people with long-term neurological conditions but for everyone with long-term conditions and, indeed, those with acute health problems to optimise health and well-being. Rehabilitation is aimed at enabling individuals with disabilities to reach and maintain their optimal physical, sensory, intellectual, psychological and social functional levels. Reablement is intensive intervention to optimise function, often focusing on independence in activities of daily living, including acute exacerbations of a long-term condition.
Allied health professionals deliver rehabilitation and reablement and they may train patients, carers, support staff and others to develop their skills in rehabilitation. Rehabilitation and reablement reduce length of stay and minimise hospital readmissions. Vocational rehabilitation supports individuals to return to work and become economically active.
On 5 October, my right honourable friend the Health Secretary announced that £70 million of extra funding will be allocated to primary care trusts to be spent this financial year across the health and social care system to enable the NHS to support people back into their homes after a spell in hospital through reablement. PCTs will work closely with trusts and local authorities in delivering this.
Allied health professionals also have a broader role in public health and health promotion. It is clear that this is important for those with long-term neurological conditions and other long-term conditions. Some allied health professionals work in public health to reduce the risk factors that may impact on health and well-being. Allied health professionals’ services are actively engaging and brokering services with the third sector. An example of this is in County Durham, where the therapy services are working with the Multiple Sclerosis Society to offer a lifestyle programme, including diet and exercise advice, to improve general health and social engagement.
I now turn to some of the questions that were posed in this debate—I suspect that there were too many for me to answer now—not least the extremely important issues raised by the noble Baroness, Lady Finlay, about multidisciplinary teams, on which a lot of work is currently going on in my department. Suffice it to say at the moment that for all the reasons given by the noble Baroness it is imperative that the future commissioning arrangements ensure wide engagement with all clinical professionals, including allied health professionals. As she said, part of this will depend on the development of tariffs for long-term conditions. We are working to improve the tariffs for community services and mental health, in particular, and I undertake to keep the noble Baroness apprised of our progress.
The noble Baroness, Lady Thornton, spoke about the context of the White Paper and questioned whether the architecture outlined in it could satisfactorily address the need to ensure multidisciplinary and integrated working. Effective GP-led commissioning will require the full range of clinical and professional input alongside that of local people. Nurses, allied health professionals and others will all have a vital role to play, with a real opportunity to develop services and improve the health outcomes of their local populations. As the Government have made clear, healthcare will be run from the bottom up, with ownership and decision-making in the hands of professionals and patients. It is only by putting patients first and entrusting professionals to design and configure services that we will drive up standards, deliver better value for money and, ultimately, create a healthier nation.
My noble friend Lord Alderdice talked about key workers and the need to avoid multiple referrals. He is absolutely right. There are many examples of allied health professionals working as key workers, particularly occupational therapists. Multiple referrals can also be avoided through the greater use of self-referral to allied health professional services. This has been available on the NHS for many years but is an option that is perhaps not as well known as it should be. He asked how we can reduce turnover in nursing and physiotherapy and thus ensure long-term continuity of care. We are concerned to ensure this. Through the new architecture of commissioning, I want to see allied health professionals and community nurses re-engaged with commissioning decisions to ensure that services really are commissioned right through the care pathway and across sectors such as health and social care. My noble friend also asked what news there is about the registration of psychotherapists and counsellors. Strictly speaking, so I am advised, they are not classified as allied health professionals. Be that as it may, the news on this has to reach my ears, so I need to write to him about it.
The noble Countess, Lady Mar, asked whether the coalition accepts that CFS/ME is a neurological condition. The Government accept that it is a neurological condition. In many cases, allied health professionals will have a role to play and it goes without saying that all of them should treat patients with respect and dignity, whatever their diagnosis.
The noble Baroness, Lady Finlay, pointed to a shortage of speech and language therapists. Admittedly the latest official figures that I have are rather historic, but I am advised that the vacancy rate as at September 2009 was 0.6 per cent, which does not sound very large to me. The noble Baroness, Lady Greengross, raised the issue of dementia training. This care is covered in the training of all the allied health professions at an appropriate level for the profession concerned.
I hope that, in the time available, I have illustrated the valuable contribution that these professionals make not only to people with long-term neurological conditions but also in meeting the health and social care needs of the wider population. I recognise that allied health professionals could and should be playing a greater role in service redesign to deliver the true outcomes that people want from healthcare, as well as improving productivity.