Public Petitions Committee

Meeting date: Tuesday, June 15, 2010

Official Report 352KB pdf

---

New Petitions

---

Parkinson’s (Medication) (PE1331)

Good afternoon, everyone, and welcome to the 10th meeting in 2010 of the Scottish Parliament’s Public Petitions Committee. We have a long-standing apology from our deputy convener, John Farquhar Munro. No other apologies have been submitted so far. We will see how it goes for the rest of the meeting. I ask all members of the public and committee members to switch off all mobile phones and other electronic devices.

I welcome to this afternoon’s session Waid academy students. For those who are not familiar with Waid academy, I should say that it was one of the high schools that we visited as part of our committee’s tour of Scotland. We had a very successful session there and there is an item on today’s agenda relating to the discussion that we had there. I wish the students well and wish them good luck for when the results come out in August. I hope that you will have done yourselves, your families and your school proud. Good luck to you when the time comes.

Item 1 is consideration of three new petitions. The first of those, on which we will take oral evidence, is PE1331, calling on the Scottish Parliament to urge the Scottish Government to take action to ensure that national health service boards support people with Parkinson’s to get their medication on time, every time in hospital and at home. It was submitted by Tanith Muller on behalf of Parkinson’s UK. I welcome Tanith Muller and Gary Hattie, who are here on behalf of Parkinson’s UK, and Gerry McCann, who is from the support group of Parkinson’s UK that is based in Lightburn, in the east end of Glasgow. I invite Tanith to make some opening comments.

Thank you very much for inviting us to present evidence to the committee today. As members will have seen from the fairground in the garden lobby, the issue of people getting their medication on time is an enormous one for people with Parkinson’s and their families. That is why 70 people who are affected by Parkinson’s are here today to see the committee begin its consideration of our petition. They have come from far afield, from the north-east right the way down to Dumfriesshire. It is also why our people have collected more than 7,500 signatures in just four weeks.

This is a big issue because it affects so many people with Parkinson’s. The figures are in our petition, but they bear repeating. More than a quarter of the 10,000 Scots with Parkinson’s are admitted to hospital each year, many of them on more than one occasion, and we conservatively estimate that about 800 of them do not get their medication on time while they are there. We hear that consistently about every health board in Scotland.

People with Parkinson’s who live alone sometimes need help to maintain their medication regime. If they cannot get their medication, people are admitted to care homes for the want of better symptom control. Once they get there, they may still struggle to get their medication on time.

I asked Jean Ballantyne, who appeared with her husband Mel in the film that we made to go with the petition, what the biggest impact was of people not getting their medication on time. She replied, “Fear.” It is hard for those of us who do not have Parkinson’s to imagine the terror of not being able to control our movements, our speech, our swallowing or our thoughts, but many of the people who have come here today have experienced that. That is why they are so committed to preventing it from happening to other people and their families.

As policy makers, you know that the financial cost must be counted as well as the human cost. We must ask whether it is a good use of resources—of money, staff and beds—to keep people with Parkinson’s in hospital longer than they need to be there for want of a self-administration policy that people know about or nurses carrying pill timers for people who cannot administer their own medication. We need to ask whether local authority budgets are really best spent in funding a care home place for someone who would be well enough to stay at home if they had the support that they needed to maintain their medication regime.

There has been progress, which has been welcome. There have been great commitments from the Scottish Government and the NHS to support people with Parkinson’s to get their medication on time, every time. There is also brilliant work happening in individual wards and hospitals, which shows that it can be done. However, there is still a gap between the good intentions at the top and the hard work at the bottom. We need the committee’s help to bridge that gap.

Thank you. I invite questions from members, to which any of the three witnesses may respond.

Good afternoon. Tanith Muller has explained the problem and the terror that can ensue. What is the one thing—or the main thing—that absolutely needs to be done to address the concerns that have been raised in the petition?

We discussed the issue and we came up with subtly different answers.

The main issue for me is education, so that there is an understanding of Parkinson’s disease and awareness of the importance of the drugs regime among medical staff.

If we truly want to appreciate the importance of the drugs regime for Parkinson’s sufferers, we need to go back to 1967, when the main drug for Parkinson’s was developed and used. Before that, people with Parkinson’s had a bleak future. They became totally disabled. Their prognosis was a future lifespan of seven years, then death.

Since 1967, lots of drugs have been brought out. Levodopa is still the gold standard, because it enables us to go from a state of disability to one in which we can function normally. Our biggest concern is that everyone should have the right to take their drugs on time, whether they are at home or in hospital. That is crucial. The drugs are the nearest thing that we have to a cure just now, because there is no cure for Parkinson’s, but the drugs that are available help us to have some quality of life. That is important for us.

Does Tanith Muller want to respond?

Your question was about what we want to happen. In the petition we mention several steps. I think that if members are to take one thing away from the meeting, it is that health boards must get their self-administration policies sorted out. That is not a golden bullet that will solve the problem for everybody, but self-administration would help a huge number of people to get it right. If the policies were in place it would be easier for general hospital staff to understand why people who cannot self-administer need additional support to get their medication when they need it.

Lots of stuff needs to happen, but if you are asking me to name one thing, I will say that health boards need to sort that out.

I welcome everyone to the Scottish Parliament. I think that I have met some of you in the Parliament before—I was not an MSP at the time but I worked for an MSP. I spotted that there were a lot of people in the garden lobby when I came in and I would have been happy to come and welcome you—I was not being rude, but I did not know that you were coming in early.

I am really pleased that you have brought the petition and that you have been invited to give evidence, because I have experience of Parkinson’s disease in my family. I have experienced the specific issue about someone being in hospital for something else, which could not be tackled because the Parkinson’s medication times had been changed to suit the medicine round—we all understand about the medicine round, but you just cannot do that with Parkinson’s disease. I am 100 per cent behind the petitioners. It is vital that people are allowed to self-administer or, if they are not able to do so, that we find a way of enabling medical staff to administer the drugs.

That is why I agree with Gary Hattie that educating medical staff is probably the most important issue. Whenever the person I mentioned had hospital visits and the family told the medical staff that there was a problem, there seemed to be a real lack of understanding about why their Parkinson’s symptoms had deteriorated. It did not matter how many times the medical staff were told; a basic level of education was needed. Educating medical staff is therefore probably the single most important issue. Any nurse who is aware of the need will do whatever they can to meet that need.

NHS Quality Improvement Scotland’s neurological guidelines acknowledge the needs of people with Parkinson’s. What is the main barrier to what you want happening? What is stopping it? Is there one thing that needs to change? Is change simply not happening quickly enough? Is it not accepted that things need to change?

The neurological standards are great, and we worked quite hard to ensure that the need for patients to get their medication on time was included in them. I suppose that the problem is that most people who go into hospital with Parkinson’s do not do so because of it. They do not go into wards in which staff are necessarily aware of the standards. That causes problems. The staff in a cardiac or orthopaedic ward will not necessarily know the standards. I suppose that that means that we need boards to understand that such policies are needed not simply because of neurological issues in tiny units in a few tertiary centres; rather, policies need to be rolled out across whole hospitals, as the issue is crucial.

As Gerry McCann said clearly, people being denied their freedom to move, express themselves and do any number of other things that are enshrined as things that we ought to be able to do is essentially a human rights issue. The issue arises because of bureaucracy, not because of a lack of staff good will. Often, there is a lack of education and systems to support staff to be able to ensure that people are kept right.

As Gary Hattie said, it comes down to education. Tanith Muller said that the majority of people with Parkinson’s do not go into hospital because of it. If people read medical notes and see that the patient has Parkinson’s, they must understand its relevance and the importance of getting the timing right.

I have a basic question that is similar to but different from Anne McLaughlin’s question. If education is an issue, at what level is it needed? Are we talking about education as part of nurse or doctor training or at health board management level? Should there be a combination of all those types of education? Where would you get in to get the message across effectively?

We are already tackling the matter at a number of levels. For example, since 2007, we have covered a huge number of care homes in Scotland and have got in and spoken directly to staff at the grass-roots level. I know that our Parkinson’s disease nurse specialist colleagues do a lot of work in individual wards on grass-roots community building.

It seems to me that we are being let down in the areas that you identify. The problem is not widely known about in the general medical profession and in the nursing and health professions. We need to get it in there.

It seems to me that training is one issue. Health boards must take the matter seriously and see people not getting their medication on time as a serious issue that needs to be addressed. In Parkinson’s UK, we try to encourage people who have had a bad experience to make a formal complaint so that the matter is followed up. We know how hard it is for people to feel that they can complain. Often, they do not do so, so people have bad experiences and things do not go anywhere. There is no comeback on those bad experiences. We need leadership in health boards and in ward management to ensure that bad experiences do not happen, the matter is treated with the seriousness that it deserves, and the people who have come here today and those who could not make it today are afforded their medication.

14:15

Basically, I think everybody is sitting on the fence on this one. To get it fixed quickly, you start at the top with the person who actually deals with drugs in the ward. That would give a short-term fix, but training is needed for the longer term.

Yes. You are basically saying that that should be done at hospital pharmacy level.

Yes.

And even beyond that at health board management level.

Yes, so that the training covers everybody.

You say that specialist nurses are going into individual wards, but are they tackling the issue higher up than that at the health board management level? Is the message being put across there? It seems to me that it could be dealt with at that level, and come down from there to ward level.

I would have to defer to my Parkinson’s nurse specialist colleagues on that to double-check whether that is being done. My understanding is that the majority of their influencing work on this happens at grass-roots level, and it often involves their tracking people who they know are going into hospital and following up on them.

Unfortunately, I was going to hospital quite a bit with other things, and was refused my drugs. By the next day, I was unable to move or communicate very well. My wife was so concerned that she phoned my nurse specialist, who came in and spoke to the sister on the ward and the consultant. From that moment on, I was able to get my drugs. When I am in any other ward, she needs to come and double-check that I get my drugs. I know that nurses on wards change and you are not always in the same ward and can be in another part of the hospital. Fortunately, my specialist nurse is a good fighter for me, so if there is any bother, we lift the phone and she can sort things right away, which means I am not left totally disabled.

Convener, when we come to decide what to do on the petition, we should perhaps look at a more strategic level.

I apologise, as I was held up and missed the start of the meeting.

When I do work with constituents on issues around Parkinson’s, the issue of the Parkinson’s nurse specialist comes up time and again, because some health board areas in Scotland have good provision in that regard but provision in others is less good. Where are we on specialist nurse provision across health boards? It seems to me that the nurse specialists play an absolutely key role in all sorts of ways, whether it is ensuring that someone has the correct drugs when in hospital or when they go into a care home. I am pleased to hear that you have been doing a lot of work with care homes. I think that training for staff in care homes is an issue, not just for Parkinson’s but for other conditions as well. Obviously, though, Parkinson’s is particularly critical because of the specific nature and timing of the drugs. I wonder how you see that work being taken forward. For example, I would be interested to find out from the Scottish Commission for the Regulation of Care where this sort of work fits in with care standards in care homes.

Your first question was on where we are with nurse specialists. The answer is that we are better placed than we were, but we are still not there in terms of the amount of provision. When I hear people like Gerry McCann talking about how important his nurse is and his relationship with her, I find myself thinking about the people who do not have a nurse. Huge numbers of people in Scotland with Parkinson’s have never spoken to a nurse specialist. The Royal College of Nursing has a current campaign on specialist nurses, but a huge concern of ours is that specialist nurse posts may be under threat in the current financial climate.

We have seen real progress in many health boards recently, including in Rhona Brankin’s health board—NHS Lothian—which now has three nurses where previously there was only one. That provides a much more realistic work load, although there are still not as many such nurses as the ideal National Institute for Health and Clinical Excellence-recommended patient load suggests there should be.

There are some other health boards in Scotland that are really problematic, in which protracted negotiations with managers are still leaving existing nurse specialist staff overstretched to the point that there are hundreds of people with Parkinson’s who are not getting the support that they need or even meeting the nurses.

So, yes, I totally agree with you on that. I am afraid that I have forgotten what you moved on to.

It was training in care homes and the role of the care commission.

We are doing some work with the care commission. My colleague, the national training manager for Parkinson’s UK, is based in Scotland. She is currently meeting the care commission to discuss what we can do formally to move things forward in addition to the work that is already being done on training sessions for care home staff. It is an area that we are expanding into, but it is enormous and we need the care commission’s commitment to help us to sort the issue out if we are to make a change.

All committee members are very supportive of trying to find ways to address the issues that you have raised in the petition. A number of comments have been made and we are now at the stage of formalising what to do next with the petition. I invite members to suggest how we might progress. Nanette Milne mentioned something specific.

Yes. I think that we should ask the Government what it is doing with health boards to get the importance of the issue across at the strategic level and to highlight the fact that health boards should be taking action in the hospitals in their areas to ensure that staff know the importance of giving Parkinson’s medication on time.

We need an up-to-date figure for the number of Parkinson’s nurse specialists in each health board area. Parkinson’s UK may have it—it is probably relatively easy to get. It would also be interesting to find out where health boards are in implementing the guidelines on Parkinson’s. There are a range of actions that they should be taking. In addition, it would be useful to get some feedback from Parkinson’s UK and the care commission on the work that is being done on care homes and care standards.

We should write to the Royal Pharmaceutical Society of Great Britain, the RCN and the Association of British Neurologists, asking for their responses to the many important and serious issues that the petitioners have raised relating to the need for education, awareness and a uniformly applied self-administration policy both within and outwith hospitals. Those are issues that we should take up.

I do not know what our witnesses will think of this idea, but perhaps we could move things on a bit faster by inviting a cross-section of boards to come and answer questions here. We have done that before on another issue.

I apologise if somebody has already covered this, but we could write to whoever provides training courses for nurses. I am sure that doctors are aware of the issues, but it is nurses who provide the day-to-day care in the hospitals. We could write to a selection of nurse training providers, making the point that people with Parkinson’s are often in hospital for something completely different and so all nurses need to be aware of the issue. We could ask whether they incorporate awareness raising in their training and, if they do not, whether they will.

Do other members have any comments on the suitability of Robin Harper’s suggestion?

Robin Harper’s suggestion is a useful one. It might be useful for us to write to health boards, asking what the local situation is. A difficulty that the committee has come across in the past is that different health boards operate slightly differently, so it would be useful if we initially asked a cross-section of boards how they deal with the issue when people are admitted to hospital, so that we can get a clear understanding of the instructions that come from health boards. We might then follow up Robin Harper’s suggestion about inviting boards to give evidence.

I have been talking to the clerk about timetabling. It looks like the appropriate meeting to aim for is our first one in October, if that is okay with members. The idea is worth while in principle, but there is a practical issue about getting it together.

For clarification, would we write to health boards to ask for information and at the same time ask selected boards to present themselves in October? I think that Tanith Muller mentioned that there are problem health boards.

There are problem health boards with regard to nurse specialist cover—I might not want to go on the record about that.

We will move swiftly on.

It would not be a bad idea to decide which health boards to invite after considering the responses that we get. We might want to hear from a health board whose provision is good and contrast the board’s approach with that of other boards. We might want to hear from rural and urban boards, for example.

We will sort that out. I think that the clerk can step up to the plate—that is a euphemistic way of describing it. In our letters to health boards we will say that we might want to invite boards to give evidence in due course, when we have had their responses. We will alert boards to that. Is that okay?

We do not want to put the witnesses in a difficult position. I am sure that some Parkinson’s UK members will think that it might be useful to contact the clerk about provision in their areas.

They might do.

I encourage them to contact their local elected members, too. We do not like to shove work off—unless it is to the clerk.

In the Public Petitions Committee we often hear about things that should be getting done, and we are always shocked that the reality on the ground is that things are not happening to the extent that we would expect them to happen. We hope that we can move forward on the issue and make a genuine difference.

An incredible number of folk from throughout Scotland came to lobby the Parliament today in support of the petition—I know that some people are watching the meeting from an overspill room. I want to put on record our appreciation of your being here, because we know how challenging it can be to find the time to get to the Parliament. I encourage everyone who is here to raise the matter directly with the elected members in your constituency and region, if you have not already done so, so that elected members, too, can try to address your concerns. Thank you all for your time—and thanks to Gerry McCann and Gary Hattie for their evidence.

---

Wind Farm Developments (PE1328)

PE1328, which was brought by Jack Farnham, calls on the Parliament to urge the Scottish Government to guarantee a minimum separation distance of 2km between a wind turbine development and any residential property or building, regardless of whether they are single dwellings or part of a settlement, to minimise potential health, safety and environmental risks.

We have received a submission and we have a briefing paper on the petition. I invite comments from members on how to handle the petition.

14:30

There is an issue here that we should pursue on behalf of the petitioner. We could write to the Scottish Government to ask whether it would guarantee a minimum separation distance of 2km between a wind turbine development and any residential property or building, regardless of whether it is a single dwelling or part of a larger community or settlement. The petitioner says that that is what is necessary to minimise potential health and safety risks, and environmental risks.

I think that we also need to write to bodies such as Scottish Renewables to find out its view on the issue. We should also find out what the difficulties are. From reading the information on the petition, it seems to me that there are differences in the interpretation of guidance and that the matter has become complex. I suggest that it would be useful to contact local authorities to ask how they interpret the guidance.

On Rhona Brankin’s last point, I have certainly had people in Aberdeenshire coming to me on the issue, and the distances that are being quoted are a lot less than 2km. Like Rhona, I would be interested to know how councils interpret the guidance. If we select certain councils, I would be interested in hearing what Aberdeenshire Council has to say, because I have a constituency interest in the issue.

Likewise, I would be interested in finding out the views of local authorities such as South Lanarkshire Council, because issues have been raised about wind farm developments in its area, in particular about distances and noise mitigation. It is difficult to mitigate the noise of a large wind turbine, even if it is some distance away. There is also the issue of how local authorities view or handle any mitigation work that may be requested in a planning application. As we all know, the countryside is filling up with wind turbines, so we need to ensure that people are protected and that aspects of Scottish planning policy 6 are taken on board when local authorities consider whether to grant permission for developments.

So we want to continue the petition and keep it open, because we need to get further information and clarity on a number of areas, primarily from the Scottish Government and Scottish Renewables.

---

Adults with Incapacity (Scotland) Act 2000 (Role of Public Guardian) (PE1329)

Our third and final new petition today is PE1329, by Robert Adamson, which calls on the Scottish Government to put in place a review of the Adults with Incapacity (Scotland) Act 2000, with a remit to bring it up to date, specifically by introducing legislation in relation to deceased adults and in particular the role of the public guardian in such cases. We have a briefing paper on the petition. Do members have any comments?

It seems possible that there is a gap in the 2000 act, which was one of the first pieces of legislation that the Parliament passed. From what the petitioner says, it appears that if a person who is given power of attorney abuses that power, the public guardian can investigate only when the person whose estate was allegedly abused is alive, so there seems to be a gap in the legislation. We should pursue the petition with the Scottish Government in the first instance. We can ask whether it will put in place a review of the Adults with Incapacity (Scotland) Act 2000, specifically in relation to the possible gap that the petitioner has highlighted. That would be a good start.

Are there any other comments on this one?

I have read the briefing paper, but I am keen to find out the practical implications of the suggested gap and what situations have arisen as a result of it. That information would help me to clarify the implications.

I suggest that we write to the office of the public guardian to find out the number of complaints that have been made under the legislation. If complaints are being made or issues are being raised about the way in which the legislation is being used, the office of the public guardian should be aware of them and the complaints process. If the petitioner is saying that there is an issue relating to people passing away then no action being taken, that must be looked into. We could ask the office of the public guardian whether it intends to recommend that the Government review the legislation.

We should write to the Scottish Law Commission about the issues that colleagues have raised. I believe that a review is under way, and it would be useful to find out the SLC’s view on the petition and the issues that it raises.

As the briefing paper suggests, we might also write to organisations that represent adults with incapacity and their families, such as Age Scotland and Alzheimer Scotland.

Just to complete the circle, this is a particular problem that relates to legislation and to post-legislative scrutiny and review, so we should ask the Law Society of Scotland for its view.

Okay. We will write to a range of people and organisations. We will keep the petition open as we pursue those inquiries and bring it back to the committee in due course. Is that agreed?

Members indicated agreement.