Westminster Hall Debate - Parkinson's Disease [25 April 2006]

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 to 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.
 

 

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, 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

"the standard for medication is amongst the most infrequently met in care homes, and the improvement in performance is slow compared to the marked improvement seen in many other standards over the past three years."

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 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 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.