Parkinson's Disease
The final item of business today is a members' business debate on motion S3M-2529, in the name of James Kelly, on the Parkinson's Disease Society's get it on time campaign. The debate will be concluded without any question being put.
Motion debated,
That the Parliament congratulates the Parkinson's Disease Society on its award-winning Get it on Time campaign highlighting the problems faced by people with Parkinson's in hospital, with materials aimed at patients, health professionals and NHS managers; notes that there are about 10,000 people with Parkinson's in Scotland, including in Rutherglen and Cambuslang, and that more than a quarter of them will be admitted to hospital at least once each year; is concerned that many people with Parkinson's are unable to follow their medication regime in hospital; recognises that if people with Parkinson's do not get their medication on time they can suffer serious and distressing problems, including being unable to move, speak or swallow and that extended hospital stays are needed to restore effective symptom control; believes that many of the barriers to receiving medication on time can be addressed through straightforward measures, including policies enabling people who wish to self-medicate to do so, involvement from a Parkinson's disease nurse specialist or pharmacist on admission, education for hospital staff, listening to people with Parkinson's, their carers and families and wider availability of anti-Parkinsonian drugs in hospital pharmacies, and believes that measures should be taken to ensure that people with Parkinson's get their medication on time, every time.
It gives me great pleasure to speak to the motion. I thank members across the chamber who have supported and signed it, and welcome the many members of the Parkinson's Disease Society who have joined us in the gallery following a successful event this afternoon, which showed the Scottish Parliament at its best. Many members of the society were at the event in committee room 1, and I think that more than 50 MSPs attended the event to listen to the society's concerns and meet constituents. The event was positive and is to be welcomed.
I pay tribute to the work of the Mansionhouse Parkinson's support group, which covers the Rutherglen and Cambuslang area in my constituency. In particular, I pay tribute to Harry Hay, who is a stalwart of that group. Harry was diagnosed with Parkinson's disease five years ago at the age of 53, but has not let it get him down. He has campaigned steadily and raised many funds for the society. He cannot be here today, as he is at a farmers club in Stonehouse, which has agreed to contribute £500 to the society. That in itself tells a story. The club has six members with Parkinson's disease, which shows how the disease impacts on many families throughout Scotland.
There are 10,000 Parkinson's disease sufferers in Scotland. That equates to around 130 sufferers in the Rutherglen and Cambuslang area. There is a considerable human impact not only on those who have the disease, but on their families and carers as they look after those who are near and dear to them. The importance of getting the correct medication on time is crucial in order to stabilise and minimise the disease's effects. In that context, the Parkinson's Disease Society must be congratulated on its get it on time campaign, which has won awards.
There is no doubt that the effects of not getting medication on time can be detrimental. There can be physical impacts on people—they can be unable to move, speak, eat or swallow. In addition, there can be cost implications, because additional interventions can be required to stabilise patients. Admission to hospital may be required and higher levels of nursing and medical support can be associated with extended hospital stays.
The profile of the issues has been raised through the get it on time campaign. Other measures that can be taken to alleviate the problems, include self-administration policies and practical measures such as the use of pill timers and alarm clocks to remind Parkinson's sufferers when to take their medication. Hospital audits to ensure that hospitals use the correct procedures could be positive. The Parkinson's Disease Society has been active in issuing materials, including wash bags, to those who are admitted to hospital. It also has a best practice guide so that people can follow the correct procedures.
Overall, it is important to raise awareness of the issues so that we can try to alleviate the effects of Parkinson's for sufferers. An increase in the number of Parkinson's disease nurse specialists would also help. I pay tribute to Jacqui Kerr in my constituency, who is a Parkinson's disease nurse specialist in the Glasgow area. The nurse specialists are expert in specialist care and in ensuring that patients get their medication on time. There is no doubt that there is a shortage of such nurses, as there is only one to cover every 500 Parkinson's sufferers in Scotland. We really need more. It would certainly be advantageous to get the number down to one nurse for every 300 sufferers. I ask the minister to say what actions have been taken to ensure that health boards recruit more Parkinson's disease nurse specialists to address the issues.
I congratulate the Parkinson's Disease Society on the success of its get it on time campaign. I urge the Government to provide more resources and more Parkinson's disease nurse specialists. Politics is about making a difference. Therefore, we should all get behind the measures that are set out in the motion so that we can make a difference for people with Parkinson's.
I congratulate James Kelly on securing this important debate, and the Parkinson's Disease Society on the energetic and informative way in which it has lobbied members. It is important that all staff who work in hospitals and care homes have a better understanding of Parkinson's and of why the timing of drugs is crucial. In response to parliamentary questions that I asked earlier this year, the Scottish Government provided an estimate that between 5,100 and 15,350 people in Scotland may live with Parkinson's disease—about 10,000 is the likely figure.
As yet, there is no cure for the disease. Those who live with it can only hope to control the symptoms through medication or therapy. Although the cause of Parkinson's is still unknown, we know that the degeneration of nerve cells in people with the disease contributes to a lack of dopamine, which is an essential hormone and neurotransmitter in the brain. The medication that Parkinson's sufferers take stimulates the production of dopamine, enabling the brain to connect the body's movements and carry out other functions. Because of the need for a fairly consistent level of dopamine in the brain, it is necessary for medication to be taken regularly. If medication is late, the brain may not have enough dopamine to carry out basic functions such as controlled movement, speaking or eating. The severity of the symptoms that arise from not taking or receiving medication on time depends on how advanced the disease is in the particular patient.
Parkinson's is unlike other diseases with which there is the flexibility to take medication within a window of time. With Parkinson's, medication needs to be taken in a precise dose at a precise time. It is essential that people with Parkinson's who have to go into hospital can continue their strict treatment regime during that time even if they are suffering from concomitant illnesses. If nursing staff cannot provide Parkinson's patients with medication on a time schedule that is suited to the patient's needs, the hospital must make provision for patients to self-medicate. Parkinson's can be managed only if medications are taken consistently.
Parkinson's affects the brain, which leads to symptoms that are individual in presentation. Given the variety of symptoms that may be exhibited, people with the disease require different treatment regimes. As the Parkinson's Disease Society has made clear in its get it on time campaign, it is essential that Parkinson's sufferers receive care that is specifically gauged to their individual treatment regime. Some people with Parkinson's are afraid to go into hospital when they are ill because of fears that their medication may not be provided or that they may not receive it properly.
As Mr Kelly touched on, Parkinson's disease nurse specialists are the main source of support for people with Parkinson's. Nurse specialists provide clinical monitoring and can adjust prescriptions as Parkinson's progresses. However, Scotland does not have enough nurse specialists to enable those who live with Parkinson's to have one closely scrutinising their care. With the support of such a nurse specialist, people with Parkinson's have a guarantee that, if they are hospitalised, they will be given the proper medication, on time. They can rely on that if they have such specialist care.
Unfortunately, my health board—NHS Ayrshire and Arran—has only one Parkinson's nurse specialist, Paula Hewat, who I understand does a sterling job. However, in the main, she works in the south of the county and not in my constituency of Cunninghame North. She cannot possibly cover all of the up to 700 patients in the health board area, not least because of the area's geography.
Another specialist colleague is urgently required to meet the Parkinson's Disease Society's optimum ratio of 300 patients per specialist. Mr Kelly mentioned that in his speech. Unfortunately, Parkinson's disease nurse specialist Hewat's two-year contract is due to expire on 31 March 2009. If the patients in her care are not to suffer unnecessarily, her contract must be extended.
Nurse specialists work with hospital staff to ensure that the needs of patients with Parkinson's disease are not overlooked. It is imperative that provisions to allow Parkinson's patients to self- medicate while they are in hospital are implemented and that efforts are made urgently to provide more Parkinson's disease nurse specialists.
In its get it on time campaign, the Parkinson's Disease Society is promoting education on the potentially severe consequences that result if people with Parkinson's do not receive their medication on time. As Mr Kelly said, the campaign also offers practical suggestions that range from pill timers and alarm clocks to more effective systems for hospital patients to use to alert staff.
Parkinson's disease nurse specialists can be helpful in educating local hospitals and other nurses on the need for on-time medication. They can also provide the necessary follow-up to ensure that Parkinson's sufferers get the care that they need and deserve. [Applause.]
There should be no applause from the gallery, please.
I, too, congratulate James Kelly on bringing this important debate to the chamber. Somewhat unusually, I support the calls that were made by my colleague from Ayrshire, Kenny Gibson. It is a rare occasion that finds both of us calling for the same thing. Perhaps people will take heed of what we are saying.
I also congratulate the Parkinson's Disease Society's Ayrshire branch on the sterling job that it does in raising awareness of Parkinson's disease. As Kenny Gibson pointed out, Ayrshire has one Parkinson's disease nurse specialist, albeit that she is based primarily in the south Ayrshire area. As he said, that one post is simply not enough to cover the case load in the NHS Ayrshire and Arran area. NHS Ayrshire and Arran told me that the nurse specialist runs a number of clinics alongside her consultant colleague and
"a telephone support clinic and has a case load of approximately 190 patients."
I am aware of the nurse-led clinics that she runs in parts of my constituency, but even with all that work, it is clear that there is unmet need.
It is important to recognise that, although NHS Ayrshire and Arran also told me that it is
"pleased to be offering this pilot post to evaluate its overall effectiveness",
the recipients of the service say that it is effective and that they want it to continue. Indeed, people want to see more opportunities on the ground for that type of support.
I understand that the Parkinson's Disease Society is keen to pump prime Parkinson's disease nurse specialist posts to ensure the continuation of these services. However, it needs health boards to provide letters of intent to continue support when the pilots have ended. If the minister can hurry those letters along, that would be welcome.
Kenny Gibson and James Kelly mentioned the get it on time campaign. When reading the briefing that was provided to us on the experiences of people in hospital, and when talking to patients in my area, I was struck by how important the campaign is. I was pleased to hear that at Ayr hospital there have been moves to ensure that people are able to manage their medication, because some of the comments in the briefing were horrific. People are worried about going into hospital; it is suggested that in some instances they must smuggle in their own drugs. That is not hospitals taking account of the needs of patients in their care, and I hope that the issue will be looked at.
I pay tribute to the Ayrshire branch of the Parkinson's Disease Society for the work that it is doing on social and other support activities. The issue is not simply about medication and the medical care that people receive; for many people, it is also about coming to terms with the impact of Parkinson's on their family life. I am pleased that my local branch of the society is considering extending the support that it offers through a range of activities and initiatives and is keen to publicise those. Because of its work, there have been a number of successful fundraising initiatives in my area. A significant sum of money has been raised, including from shoppers at our local Tesco in Auchinleck and at the New Cumnock Sunday school. A range of people who did not know about Parkinson's before are now aware of the issue.
I congratulate James Kelly on bringing this matter to the chamber. I thank everyone who has come along today for briefing us and listening to the debate from the public gallery. I trust that the minister will have some warm words to say to them at the end of the debate in response to the points that have been made.
I, too, congratulate James Kelly on securing the debate. As he said, it is estimated that there are about 10,000 people with Parkinson's in Scotland. Although most people who are diagnosed with the disease are over 60, one in 20 are under 40, which poses a greater problem when it comes to prescribing medicines. Although drugs cannot cure Parkinson's, they can do much to relieve its symptoms—the aim, as Kenny Gibson said, is to replace missing dopamine.
As James Kelly's motion states, delayed medication can lead to serious problems for patients—the inability to move, speak or swallow, uncontrolled movements and distressing psychotic symptoms. I was pleased to attend today's event in Parliament, arranged by the Parkinson's Disease Society, at which James Kelly was also present. There, I met a lady from Buckie who explained the issue to me in a way that has enabled me to understand it much better than I could have from reading material.
Although I am delighted to contribute to the debate, I also feel some anger and frustration. I am sure that that is no more than patients feel, but I find it incredible that in this century patients can go into hospital but are not given the medication that they need when they need it. People worry a great deal about going into hospital and about facing distressing symptoms that can lead to confusion, extended stays and so on.
The get it on time campaign is excellent, but I am frustrated by the fact that staff are not responding to patients' needs. That is why the campaign is so important. It was launched in 2006 to help and support the work of nursing staff in stabilising people who are suffering from Parkinson's. A survey of Parkinson's disease nurse specialists in 2006 found that nine out of 10 nurses believed
"that patients with this disease experienced clinical problems or an extended hospital stay because of … late administration of medicine."
It is a problem of communication as much as anything.
Much of the problem seems to stem from the fact that patients are admitted to hospital for conditions other than Parkinson's such as falls, urinary disorders and heart and lung problems. They are admitted to busy general wards, where nurses are obviously unaware of the importance of the timing of medication for Parkinson's. Hospitals may do four drug-dispensing runs a day, but those do not necessarily coincide with patients' timings. I asked a lady today at what time she takes her drugs. She told me, "I take them when I know my body needs them." That is why self-medication and respect for the patient are so important.
Another worrying issue, which was highlighted in a report on hospital audits of medicines management for people with Parkinson's, is that
"there was prescribing of contraindicated drugs."
Patients are being given drugs that can have side-effects when taken with the drugs that they are smuggling in under their nighties. That is a very serious issue. It is not just the problems that are associated with the disease that are exacerbated by patients receiving medicine at the wrong times; extended stays in hospital and the potential for hospital-acquired infections should also be considered. As we know, those bring additional costs to the national health service.
I understand that there are 13 Parkinson's nurses working in Scotland. They provide valuable care to people. I know, representing the Highlands and Islands, that it would be almost impossible for a Parkinson's nurse regularly to visit every person with Parkinson's in the area, but I have discussed the matter with my colleague, Dr Nanette Milne, and we both visited the Scottish Centre for Telehealth in Aberdeen last week. We wonder whether more support could be provided through telehealth to cut down on travel times for people with Parkinson's as well as for nurses and doctors.
I join other members in congratulating James Kelly on securing the debate. I congratulate the Parkinson's Disease Society on holding an excellent meeting this afternoon, when I met constituents from Perthshire and elsewhere in Tayside, from the Forth valley and from Fife. It was very interesting to listen to and talk with them.
Kenny Gibson referred to some of the symptoms of the condition, which are highly variable although it is a progressive condition. They include tremor, bradykinesia—difficulty in initiating and completing movement—rigidity and loss of balance. There are also lots of secondary symptoms, which I will not go into as we do not have time.
Parkinson's is a difficult condition, but the most important thing about it is that it varies greatly among patients. It is not a simple and straightforward condition, so one needs to examine the patient very carefully and work with them. Of all the diseases that I worked with in general practice, Parkinson's could almost be said to be the one for which the concept of partnership between the patient and the professionals who are involved in their treatment is most vital. That partnership must be equal.
In the hospital setting, treatment of Parkinson's is about empowerment of patients and recognising that patients are not done to, but worked with. That is fundamental to the attitude that we need to inculcate in hospitals. It exists among the best staff, but among other staff there can still be problematic timetabling of medicines, as other members have mentioned.
As Mary Scanlon mentioned, Parkinson's is a condition for which the patient is often the best judge of when they need the next dose of treatment. I appeal to the minister to examine carefully the guidance that is currently issued on administering medication in hospital for Parkinson's and other conditions. The time has come for us to stop the process whereby people come into hospital and have their medicines confiscated. I found too often that patients whom I had got on to a reasonably stable dose of levodopa, in various forms of slow and quick release and in various types, went into hospital only to have their medication taken from them and be given a different set of medications, ostensibly to do the same job. That, however, created absolute havoc with their condition.
The time has come for respect to be paid to primary care. If the condition is being managed by the network that supports patients with Parkinson's and if the medication is balanced, that medication should continue in the hospital. If possible, it should be self-administered. I realise that that is not always possible—in the late stages of Parkinson's, there might be issues to do with the patient's capacity, and there might also be issues around people being able to take and swallow the medicines themselves. Despite such issues, the general guidance should be for patients to self-administer.
The vertically integrated network concept that I am talking about includes the neurologist, the physician, the specialist nurse, the occupational therapist, the physiotherapist, the speech and language therapist and the primary care doctor. That is the group that should be working with the patient, on a care-plan basis. I have said before that such patients should have care plans that they understand. When they go into hospital, they can present their care plans and say what drugs they will self-administer and when.
There are concerns about specialist nurses. In a discussion about neurology nurses, the minister undertook to try to keep up the pressure on boards to ensure an adequate supply of neurology-trained nurses to support patients with Parkinson's and other conditions. I would like to hear in the minister's summing up what has happened in that regard. I hope that the minister will examine the arrangements and guidance for the administration of medicines, and that she will review how far we have got in ensuring the adequacy of specialist nurses across the board in Scotland.
I apologise to members: I am due to chair a meeting on stroke this evening, so I will have to leave just before quarter to 6.
I, too, congratulate James Kelly on securing a debate on this very important topic. I am impressed by the number of people with Parkinson's disease who have come along to listen to the debate; the turnout in the public gallery is one of the biggest I have seen for a members' business debate for quite some time—it is a clear indication of how much the issue means to those people and their families. It is also good to hear that there was such a good turnout of MSPs at the event earlier today.
I welcome the support that the Parkinson's Disease Society provides for people with the condition and their families and carers. "Better Health, Better Care" signalled our wish to work more closely with the voluntary sector. Our work on long-term conditions emphasises the importance of signposting people to the information and support that organisations such as the Parkinson's Disease Society can offer.
The motion mentions that there are about 10,000 people in Scotland with Parkinson's disease. There has been some discussion with the society about the number involved. We are advised on these issues by the information services division of NHS National Services Scotland. I am pleased that the ISD and the society have reached agreement on a figure of around 10,000 people. I shall answer a parliamentary question from Kenneth Gibson on that point shortly, which will provide another opportunity to put the figure on the record.
The main issue that the motion raises is the problems experienced by people with Parkinson's who are unable to follow their medication regime after they have been admitted to hospital, either because they are not allowed to administer their own medicines or because they are not given their medicines at the right time. As James Kelly and others have made clear, disruption to the medication that people with Parkinson's need can cause serious and distressing problems. I agree fully with the part of the motion that says that that problem must be addressed. It is unacceptable that anyone with Parkinson's should feel scared of going into hospital.
Several pieces of work will tackle the problem. The National Institute for Health and Clinical Excellence guideline 35 on Parkinson's disease, which was published in June 2006, highlights the importance of timely medication in hospital, including self-medication. Of course we expect healthcare professionals in Scotland to be aware of such guidelines and to implement them.
Both the NICE guideline and the guideline that the Scottish intercollegiate guidelines network is developing on Parkinson's will form part of the evidence base that underpins the clinical standards on Parkinson's disease, on which NHS Quality Improvement Scotland is working. A draft of those will be published next week. An essential principle of those standards is that they should focus on the issues of importance for those for whom services are provided.
I have no doubt that, through the work of the Parkinson's Disease Society, the standards will emphasise medication in hospital. We need to ensure that the standards are followed. Similarly, I am sure that the standards will highlight the important role that Parkinson's disease nurse specialists can play, such as helping hospital staff, especially those in general wards, to understand how important it is that people with Parkinson's get their medication on time. We should expect health boards to follow those standards. I undertake to ensure that how that is taken forward is monitored.
Another way of ensuring that the issue is addressed is through the development of managed clinical networks for Parkinson's disease. That would give a strong voice to patients and the voluntary sector in the delivery of services. We have recently received a proposal for the development of such an MCN in the west of Scotland. One of its specific aims is the resolution of areas of current concern, and the application explicitly refers to the hospital management of anti-Parkinson's medication. We strongly support the proposal in principle as it is consistent with the priority that "Better Health, Better Care" gives to the development of MCNs for neurological conditions, and we are considering how best to take the application forward.
There are other pieces of work that have a bearing on the problem. With the backing of the then Scottish Executive, the national pharmaceutical forum and the Scottish Medical and Scientific Advisory Committee issued a report in 2006 called "Patients and their medicines in hospital". It emphasised the need to support patients and encourage them to take responsibility for their medication, including, when appropriate, self-administration.
The national pharmacy strategy, "The Right Medicine", issued in 2002, recommends the involvement of pharmacy staff in pre-admission clinics and on admission wards so that any medication issues are identified and addressed as soon as possible after the patient enters hospital. National health service boards should ensure that those initiatives are being implemented in their areas. We can follow up on that.
We are also undertaking a review of the role of the charge nurse. An important element of the work is to empower charge nurses to ensure that each clinical area responds effectively to the needs of patients so that people have a better experience in hospital. That includes supporting self-medication for individual patients when appropriate.
I hope that it is clear from what I have said that the Scottish Government fully supports the principle that patients should, whenever possible, be able to self-administer their medicines while in hospital. It is also essential that they receive their medication when they need it, in line with their prescription and individual care plan. Naturally, hospital staff will have genuine concerns about safety and the need to ensure that powerful medications are stored securely, but local policies should be able to address those concerns.
Self-medication is a good example of the self-management that lies at the heart of our long-term conditions work and informs the national strategy for self-management, "Gaun Yersel!", which was developed by the Long Term Conditions Alliance Scotland. The core of that strategy are the beliefs that people with long-term conditions are the leading partners in their own care and that, in managing their condition, the professionals should recognise the expertise that, as Richard Simpson outlined, they and their carers have. I am in no doubt about the shift in culture that such an approach requires but, as the motion points out, people with Parkinson's, their families and their carers must be listened to. We must ensure that their voices are heard, and I can give a commitment that, as minister, I will play my part in ensuring that that happens and that boards play their part in delivering change on the ground.
Meeting closed at 17:38.