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Parkinson's Disease

1 pm

Mrs. Madeleine Moon (Bridgend) (Lab): I am glad, Mr. Cummings, that you are chairing this debate, which is my first Westminster Hall debate. It is taking place during Parkinson's awareness week. The Parkinson's Disease Society is using this week to launch its "Get it on time" campaign to ensure that people with Parkinson's disease in hospitals and care homes get their medication on time, every time.

This campaign should not be needed. Having worked in health and social services settings for 25 years, managed a joint health and social services team working with people with dementia, written social services contracts and been an inspector with the Care Standards Inspectorate for Wales, I cannot accept that a charity focusing on a long-term degenerative condition should need to launch a campaign that focuses on patients receiving their medication on time. This is not just an issue of patient choice, but an example of health and social care settings failing to provide basic care, basic rights and basic protection and quality of life for those with Parkinson's disease.

I want to make clear the implications for someone with Parkinson's disease of not getting the right medication on time. Parkinson's disease is a degenerative neurological condition for which there is currently no known cure. Consequently, clinical treatment focuses on management and control of symptoms. Parkinson's disease occurs as a result of loss of cells that produce the neurotransmitter dopamine, which is one of the brain's chemical messengers and enables people to perform co-ordinated movements. We do not know why those cells die.

The main treatment for Parkinson's disease is medication, and specific drugs work by replacing or mimicking the action of dopamine. Patients are often on a number of drugs, each of which must be taken throughout the day at specific times. Alun Morgan, who is chair of my local Parkinson's Disease Society, needs a mixture of five tablets and capsules at 7.30, 10.30, 12,30, 2.30 and 6.30. They stimulate a complex, carefully timed release of chemicals to the brain to control his symptoms.

Common conditions and features of Parkinson's disease can include slow walking, poor posture, freezing—that is, inability to move—a running gait of small, unsteady steps with the result that patients are liable to fall, and a tendency to stoop backwards when walking. The proper timing of medication is vital to managing the symptoms. If someone with Parkinson's disease is unable to take their prescribed medication at the right time, the chemical balance is altered and disrupted, and so their disease can become uncontrollable. With an uneven release of dopamine, a person may suddenly be unable to get out of their chair, walk or get out of bed. Their sleep may become disturbed and their bowel and kidney function and digestion may be affected and they may have mood swings, hallucinations, anxiety and fear. All those things may happen because they do not get their medication on time. Once that balance of chemicals has been upset it may take hours, days or even weeks to get it right again and to stabilise it so that the patient and their carer can get on with life again.
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The Parkinson's Disease Society is using this week to lobby hospitals, chief executives, chief nursing officers, chief pharmacists, consultant neurologists and geriatricians, and patient advice and liaison services to promote awareness of the disease and the need for prescribing accuracy and access to correct and timely medication. Following the awareness week, the society plans to move on to target the care sector and raising standards in care homes.

With so many problems, new initiatives, developments and questions concerning Parkinson's disease, the society should not have to spend its time and money and its members' resources on raising the attention of professionals to what should be a basic standard of awareness, care and provision in hospitals and care homes. Sadly, the daily experience of patients with Parkinson's disease shows that it does need to spend that time and effort.

From my past working experience, I know that there is no simple reason why people with Parkinson's disease may not get their medication on time. All too often, nurses and care staff do not understand the condition or how important it is to stick to a medication regime. With the new faster pace of the national health service, patients may be admitted to wards where the nurses have no experience or background of nursing patients with Parkinson's disease. Friends who are nurses tell me that with the spread of specialism in nursing, nurses' general bank of information and knowledge about a wide range of conditions is being lost.

On the whole, hospitals do not allow patients to bring into hospital the medication that was dispensed at home by their general practitioner and that works for them. The hospital pharmacy may not have the required medication or it may take some time to obtain it. Sometimes the pharmacy sends up standard-release medication as a substitute for slow-release medication, which substantially alters the nature of the medication for the patient. Meanwhile, the lack of understanding of Parkinson's disease, coupled with the inflexibility of drugs rounds in hospitals and care homes, can have a devastating effect on the patient's functioning.

A survey of Parkinson's disease nurse specialists uncovered the nature and extent of current problems in hospitals. None of the nurses who responded to the survey said that in their hospital medication was always administered on time to Parkinson's disease patients and only one in four said that that normally happens. One in five believed that patients rarely or never received their medication on time, 46 per cent. felt that awareness of medicine management among hospital staff was not high and one in 11 felt that ward staff were very unaware of medicine management in relation to Parkinson's disease. It was noted in additional comments that missing medication caused disturbance and distress to patients and carers and exacerbated the condition, and knowledge of pre-operative and post-operative medicine protocols and the interaction of Parkinson's disease drugs with other medication was described as limited.

If there is slow progress in some hospitals, there is even greater lack of progress in medication management and the rights of patients in care homes. In February this year, the Commission for Social Care Inspection published "Handled with care?" It showed that nearly half of care homes for older people and younger adults,
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which provided 210,000 resident places, are still not meeting the minimum standards relating to medication. That lack of responsiveness suggests that care homes do not have sufficient incentives to take change on board, despite the risk of prosecution. I saw that at first hand as an inspector. I saw drug rounds not having started two hours after they were due and out-of-date medication on trolleys. I saw medication for a specific patient given to someone else with an adverse reaction as a result.

The inspectorate's report shows that between 2003 and 2005, the proportion of homes for older people and younger adults meeting the national minimum standards for medication increased to only 55.5 per cent. in homes for older people and to 61.5 per cent. in homes for younger adults. The report states that

Inspectorate pharmacists have also identified risks to service users because of the poor standard or complete absence of training for care workers.

That report is about England, but the situation is no different in Wales, where colleagues confirm that the report mirrors practices and difficulties that are experienced there. Why is this happening? Homes must meet standards on medication, which require administration by designated and appropriately trained staff. Training for care staff must be accredited and include basic information about how medicines are used and how to recognise and deal with problems of use, but sadly there is no commonly agreed accreditation programme. I have seen older, experienced staff pass on bad practice to new staff, then sign a training form and call it accredited training.

I do not want to be unremittingly depressing during this debate, as change is happening, and good practice does occur. Changes are made as a result of listening to patients and their carers. One simple change has been to provide pill timers to nurses. They carry the timers and know when the alarm sounds that it is time for the Parkinson's patients to have their medication. Sadly, the timers are not generally available—a Parkinson's patient will find them extremely difficult to get from their local pharmacy—but some hospitals are gradually rolling them out.

Some hospitals have made training videos with their local Parkinson's society and provided laminated posters and information sheets for ward staff. One hospital has a database that highlights Parkinson's patients coming in, so that the pharmacy will know that it has to get in a supply of their medication.

When doing the research for this debate, I was most impressed by a new procedure piloted in a hospital where joined-up thinking has helped solve many of the problems. By establishing medication records within hospital and community pharmacy services, patients' records can be updated if a GP changes their prescription. A new drug chart with a different appearance and colour that highlights the fact that
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Parkinson's patients have different medication needs reminds nurses that such patients must receive their medication on time.

Mr. Jeremy Browne (Taunton) (LD): I applaud the time and attention that the hon. Lady has given to the needs of Parkinson's disease sufferers. Does she share my desire for the Minister to speak about the search for potential cures for Parkinson's disease, in particular stem cell research? Britain has a real opportunity to carry on with pioneering work and lead the world in easing the suffering of millions of people around the world who suffer from Parkinson's disease and, for that matter, other terrible genetic conditions. People could benefit on an even greater scale from the work being done here in Britain.

Mrs. Moon : I thank the hon. Member for Taunton (Mr. Browne) for his intervention. I appreciate his interest in the debate, and especially for staying on after his own debate to take part in this one. I know that he has a personal interest in the matter, as a member of his family has developed Parkinson's disease. I hope that the Minister will be able to give some time to the issue that the hon. Gentleman raises, but today I wish to emphasise the importance of Parkinson's awareness week and the campaign about medication. This matter must end here, this week. We must not have this debate ever again.

In the hospital to which I referred, a new system is being developed for Parkinson's patients to self-administer their medication, which is important. The hospital has been able to develop clinical governance and an assessment that allows staff to decide whether a patient needs nurses to monitor the timing of their medication. If such patients cope at home, why cannot they cope in hospital? They can manage their own medication, and they know that they will get it on time. The hospital also has a system in place to ensure that it is well supplied at all times with Parkinson's medication.

Those arrangements mean that if a patient is deemed capable, they are given a little bum-bag—excuse the expression—containing their medication, which they can take when they are ready. They do not have to wait for nurses to be ready. Patients with Parkinson's are not always able to self-administer their medication, but the campaign and the hospital provided a training regime for all the nursing staff in the hospital.

As well as the "Get it on time" campaign, the Parkinson's Disease Society is making one small financial request for an extension of funding for the medicines management collaborative project, which has done so much good work to promote progress and best practice in medicine management across so many trusts.

There are care standards, clinical governance standards, medicine management frameworks and national service frameworks, yet we are having this debate. It is still necessary for staff working in hospitals and care homes to receive training and to come to understand Parkinson's and why timely medical management is critical. Hospital and care home staff must be asked to listen to people with Parkinson's and to their carers and families. Monitoring and recording of adverse drug incidents due to mistimed medication must increase, hospital pharmacists must stock an easily
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accessible, broad range of Parkinson's medicine and people with Parkinson's who have the capacity to self-administer must be urged to do so. Finally, people with Parkinson's must get their medication on time, every time.

Those are modest demands. If implemented, they would not only improve the care and protection of those with Parkinson's, but save patients, carers and care and nursing staff from having to cope with the trauma and indignity of Parkinson's patients not being able to stand, walk, think, hold a cup or turn in bed, or becoming confused and hallucinating or being distressed by incontinence. Medication on time means independence, dignity, safety, control, protection—all priorities set out in the Government's dignity in care campaign. Along with medication that is given on time, people with Parkinson's will be given dignity. I look forward to the Minister's reply.

1.17 pm

The Parliamentary Under-Secretary of State for Health (Mr. Liam Byrne) : Thank you, Mr. Cummings, for the opportunity to respond to this debate. I did not compete in the London marathon yesterday, but I am training for a half-marathon that will take place soon. Frankly, it would have been quicker to have run from Liverpool Street this morning. I congratulate my hon. Friend the Member for Bridgend (Mrs. Moon) on her powerful contribution this afternoon.

This is Parkinson's awareness week. I wish to start by recognising the importance of raising public awareness about those who live with the disease—not just the people who have the disease, but their carers and families. I pay tribute to the Parkinson's Disease Society for the important part that it plays in providing support, advice and information that make a world of difference to so many people who live with Parkinson's every day. The society is an essential part of the support and care that is now on offer in this country, and it should be proud of the work that it has done in the past few years.

The background to today's debate is the transformation of care, particularly for older people. Most people who suffer from Parkinson's disease are over 50, so they are the very people who have benefited from the remarkable changes in the national health service and the social care system over the past few years. Life expectancy is at a record high, and GPs and consultants are now far less likely arbitrarily to deny care to older people in the way that we know happened once upon a time. For example, heart surgery for the over-75s has gone up from 2 per cent. to 10 per cent. That is a good example of how age discrimination has been stamped out in the past few years. That did not happen by accident, but because of our approach, the application of our values and our record investment in the health and social care system.

Not only do older people now get treated when they go into hospital but they get home faster. We have slashed the number of delayed discharges from over 7,000 on any given day in 2001 to just over 2,000 by December 2005. When older people get home, they are provided with far greater support than in the past. Homes with home care are up by more than 52 per cent. since 1998–99, and 40 per cent. more people are supported in living at home than in the past. That is very
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much the result of implementation of our idea that, for most people, the best care home is their own home. We made that possible through free nursing care, regardless of setting; rapid assessments for social services; and free community equipment and intermediate care services.

There are just five points that I want to make in response to my hon. Friend. The first is about how we conduct care. She talked about the national service framework, and it is important that we have such a framework. It took a long time to develop, and I am particularly grateful to the Parkinson's Disease Society and others for ensuring that there was effective input into it. The NSF focuses on improving services across England; it is an ambitious plan, and we will not achieve it overnight, which is why it has a 10-year time horizon. However, the vision on every page of the NSF is very simple: it is about ensuring that people with neurological conditions live life to the full in 21st century Britain. We have done an enormous amount to transform opportunity over the past few years, and everybody needs to live life to the full, including those with Parkinson's disease.

Mr. Browne : Will the Minister comment on my earlier point? Obviously, we are all enthusiastic about people who suffer from neurological conditions having the highest possible quality of life, but what are the Government doing to support scientific research, including stem cell research, on potentially groundbreaking treatments and cures for terrible conditions such as Parkinson's? How are they supporting and encouraging such scientific activity?

Mr. Byrne : I will be delighted to write to the hon. Gentleman about stem cell research later, but I will touch on research into neurological conditions in a moment.

Although the NSF is in place, we want to go further. That is why we commissioned the National Institute for Health and Clinical Excellence to publish clinical practice guidelines on Parkinson's disease for the NHS in England and Wales.

My second point relates to our continuing labour, together with the Parkinson's Disease Society, to find a cure and a treatment that can mitigate the conditions suffered by those with Parkinson's disease. At present, the medical profession has no means of curing Parkinson's disease or preventing it from developing. One day, we hope to find a solution through new research, but for now it is possible only to minimise symptoms through medication. That is why the Parkinson's Disease Society and my hon. Friend are right to underline the necessity of delivering medication on time.

We have established £20 million of initiatives to speed up the development of new medical treatments for dementia and neurodegenerative diseases, and the dementias and neurodegenerative disease research network will be led by University college London and the university of Newcastle upon Tyne.

To ensure the effective treatment that is the hallmark of the NHS at its best, however, we need to ensure that medical staff operate with the right knowledge. My hon. Friend mentioned stories about poor practice being passed on from one generation of medical practitioners to another. That is absolutely unacceptable and must be eliminated from the NHS and the social care system.
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One example of the way in which we are supporting care staff is systems such as PRODIGY, which is an online, up-to-date, interactive decision support tool. It is a source of clinical knowledge that helps health care professionals and patients manage common conditions that are generally seen in primary and first-contact care. I noted with interest that the section of PRODIGY that is devoted to the diagnosis, treatment and management of Parkinson's expressly recommends the Parkinson's Disease Society as a source of information and support. That is an example of how the society is well and truly embedded in our health and social care system.

My fourth point—this is central to my hon. Friend's remarks—is about how we ensure that medicines are properly managed. She is right to talk of the need to administer medicines on time, and I have asked that national minimum standards in social care be reformed to tackle unacceptable practices. As she knows, I recently set up a panel of dignity guardians—experts in the care of our citizens—to advise me on how those standards can best be revised.

Similar reforms are under way in the NHS. A good example is the team based at the National Prescribing Centre, which has helped NHS organisations improve medicines management services since 2001. The medicines management collaborative has worked with 146 primary care trusts throughout England and the hospital medicines management collaborative has helped 44 trusts. The community pharmacy framework collaborative has 28 PCTs participating in its programme, together with a number of other PCTs, and the integrated medicines management programme has 25 trusts participating in its programme.

I was especially glad that my hon. Friend highlighted the importance of the self-administration of medicine. In all the conversations that I have had with societies and organisations that support patients and carers in this field, I have been struck time and time again by the degree to which patients in the NHS often know much more about their conditions than anybody else. We must support that instinct, and that is why the White Paper, which we published in January, sets out ambitious plans for expanding the expert patients programme, and we want to increase the number of places in the programme to up to 100,000.

We also said that we needed to do something else alongside that and that we needed to introduce and expand the expert carers programme. Again, that idea was not thought up in Whitehall, but was brought to us by the Alzheimer's Society. In my constituency office in Hodge Hill, its representatives told me that carers who work with patients or users of social care are working with people whom they love very much and whom they want to support in completely different ways. However, they are often denied information about how they can best help and they are also denied the mutual support and reciprocity that come from peer networks. The expert patients programme and the expert carers
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programme need to develop those networks so that people can do more to support each other in our communities, and we shall introduce plans in respect of both those programmes a little later this year.

I touch on carers because they are sometimes much neglected in the debate about the health and social care system. There are 6 million carers in this country, and when we went out to the public to ask for their list of priorities for the health and social care White Paper, it was striking how high carers came up that list. That underlines how neglected carers have been in the debate to date. We want to ensure that carers who look after people with Parkinson's disease are given the best possible care themselves, because caring for a person with a long-term condition can be socially, physically and psychologically demanding, and it is important that we provide the support that such carers need.

We listened carefully when carers told us what they needed and we have outlined a new deal for carers. We will update the Prime Minister's strategy on carers. We will also encourage primary care trusts and local authorities to ensure that they have in place a lead to deal with carers' issues so that there is somebody in every community whose day job is to think about carers' needs. In addition, we will introduce the national helpline that carers' organisations have sought for some time.

When I talk to carers in my constituency, I am constantly struck by the fact that they often have no sense of what they are entitled to. The Government supported the Carers (Equal Opportunities) Act 2004, which the House passed last year. It will induce a step change in the support that is available to carers throughout the country. We will add to that through White Paper initiatives such as emergency home-based respite care. We will also continue support through the carer's grant, which will have been worth about £1 billion by the end of 2007–08. Those are all important aspects of improving the quality of life of those with Parkinson's disease and their families.

My final point relates to the need for further reform. The health White Paper set out an ambitious programme for shifting care out of hospitals and into the community, which is exactly where people want to see it—they want a national health service that is available not only around the clock, but around the corner. Throughout that reform programme, we must send a clear signal that this is ultimately about standards. That is why we have introduced the dignity in care campaign, which underlines the point that treating people with dignity is about treating them in the way that they want to be treated, not the way that we want to be treated. That is why we are taking steps to regulate the social care work force and why we have introduced the safeguarding vulnerable adults legislation. That is also why we are cracking down on elder abuse and working with Comic Relief to understand the issue in greater depth.

John Cummings (in the Chair): Order. We must now move on to the next debate.
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