Official Report 254KB pdf
Police (PE968)
Good morning, everyone, and welcome to this morning's meeting of the Public Petitions Committee.
Thank you for inviting us to the Scottish Parliament to give a statement about the issue of police on the beat. We first became concerned about this issue when one of the pupils in our class complained about the state of the rugby field just off Lenzie moss. The sixth-year pupils at Lenzie academy had had what they call a muck-up day on the moss and had left behind a big mess. Plastic bags, cans, bottles and food cartons had been left behind and rubbish had also been burned. Someone called the police, but they were advised to call the council to clean up the mess.
One incident happened at the shops last winter when it had been snowing and some youths had the idea of throwing snowballs at passing cars. That caused distress to the drivers and some were unable to see the road because of the snow.
Thank you for bringing a very important issue to our committee this morning. Are you aware of the legislation that the Scottish Executive has already passed in the Antisocial Behaviour etc (Scotland) Act 2004? That legislation makes the offences that you have highlighted this morning the responsibility of the police and the local authorities. Have you done any research on that legislation and how it is being used in your area?
No.
So the legislation is there but you are not seeing any signs that what it is there to do is being done, because if it was, you would not have the litter and the graffiti that you are talking about. Am I right?
Yes.
Are you aware that it is the local chief constable who makes the operational decision about how police officers are deployed?
Yes.
I am very sympathetic to what you are trying to achieve. A couple of weeks ago in Parliament I asked the Minister for Justice whether the Scottish Executive measures the fear of crime as distinct from crime itself and I was told that it does. However, it seems to me that—perhaps understandably—chief constables deploy officers where they believe they will have the maximum operational advantage, whereas you and I feel that if there are uniformed bobbies on regular patrol in the streets, that reassures the public and deals with the fear of crime as well as the type of crime that you have highlighted today. Do you go along with that? Would we feel safer if we saw more bobbies on the beat?
Yes, because it would mean that the number of those crimes might go down.
Good morning. It is refreshing to see school kids at the Public Petitions Committee with a very important issue.
Sometimes, but most of the time there is no one about the streets and things just keep on happening.
I note the graffiti in the photographs that you have given us. Do you think that having more bobbies on the beat—community police, as they say—would prevent that type of thing from happening?
Probably.
Do you agree that crime prevention is better than reaction after crime has taken place?
Yes—probably. I am not sure.
Some members of the communities that we represent come to our surgeries and ask for closed-circuit television cameras to be put up. Do you think that CCTV cameras would be as effective as community police would be? Although the cameras might deter some people from committing certain crimes, they are designed to catch the perpetrators of a crime. Police on the beat, however, would stop the crime from being committed. Do you agree with that?
Yes.
Good morning. I think that it is good that you have come to the Parliament this morning and have made a confident presentation on an issue that you care about. It is good that you care, because the more that we all care about our community, the better. In that regard, I see from your petition that you have approached your MSP, Dr Jean Turner. What response did you get from her?
I do not think that we got a response. She came to talk to us and we told her what we were concerned about. She said that she would think about it but we have not had a reply yet.
Are there any CCTV cameras in your neighbourhood?
Our school has closed-circuit television. After the last incident involving the wooden benches, the culprit was caught.
So that was positive. Are there any other areas in your community that could do with having closed-circuit television cameras?
Lots of people gather and cause trouble around some of the local shops and in some of the parks.
The back of one of the photographs of litter said that it was taken outside the beauty salon. Is that area covered by closed-circuit television?
No. At lunch time, a lot of youths from the academy hang about there. As Nicola Hardie said, the big groups are intimidating.
I congrac—I will try that again in English. I congratulate you both on your presentation. You spoke better than I have just done.
Some people still report things, but the police are not there when the public need them. Occasionally, they come around, but most of the time, they are nowhere near where the crimes are occurring.
In some of the areas where the crimes occur, there are not a lot of police officers, even though—I think—the police know that the crimes are occurring there.
Clearly, police officers want to catch people who are committing crimes. They are not sitting in the police station having a cup of tea. Do you think that too many officers are being seconded away from front-line services and that we need to get more officers back on the streets where the public need them? Is that what is behind the petition today?
Yes.
Since you are specifically complaining about the lack of policing in your area, have you met a senior police officer who has responsibility for the area?
We contacted the police, but they were not much help.
They were not helpful. They said that there was an issue, but did not say much more about the matter.
You have specifically requested that there be more police officers in your area. How many more would be appropriate? Are there special times of the day during which there should be more policing in the area?
It would be a good idea to have more police at the Moss Road shops during week-day lunch times because that is when the academy pupils come out, and most of the crime in our area has taken place there.
So there is a big issue. You are saying that your school colleagues need policing at school lunch times. You are opening up quite a big can of worms.
We are not at the academy yet—we are still at the primary school and are not allowed out of our school's gates at lunch time. However, the issue matters to people because they feel intimidated when they go past the shops.
Have you noticed any community wardens in your area?
There have been a few, but they have to come out with a police officer because they feel intimidated by the children.
The litter warden came out because we complained to her about the litter, which she knew about, but she felt intimidated by the youths and would not come out again without a police officer.
So the problem has been so severe that even people whom the local authority has appointed to do the job that you have asked should be done feel at risk from crime.
Yes.
Yes.
The situation is pretty serious.
I agree that the situation is serious if the legislation seems to be not working although adults have been appointed to take care of things. There is clearly an issue that we should be concerned about.
Our briefing note says that a new mobile police office has been introduced to cover the area. The press release about the new office states that it would, with the area's dedicated community police officers, bring a more accessible service to the Lenzie area. Could we write to the Glasgow north and East Dunbartonshire police division to ask whether its mobile police office is deployed at certain times in the areas that the kids have mentioned? I would like to get a response from that division.
If we write to Strathclyde police, we could ask about the specific division that you mentioned, rather than write to that division separately. We could ask Strathclyde police about the point that you have made.
I suggest that we write to the local authority, which might get a response from the headmaster. If school pupils at the secondary school are intimidating the public at large, including nearby primary school pupils, at lunch times, that is a serious matter for the local authority as well as for others.
The Scottish Police Federation might make valuable comments about the level of policing in general, although it will probably not comment on the specific area that the girls are from.
That is a good suggestion. The committee will contact a wide range of organisations and send Rachel Fraser and Nicola Hardie copies of the responses that we receive. When we do that, please write to let us know whether you think that the answers are satisfactory. We will then consider the petition again. Thank you very much for bringing the petition to the committee.
Thank you.
Thank you.
Hospital Parking (Charges) (PE967)
Our next petition is PE967, which was lodged by Louise MacLeod. The petition calls on the Scottish Parliament to urge the Scottish Executive to conduct an inquiry into excessive car parking charges at national health service hospitals such as the Edinburgh royal infirmary. Louise MacLeod will make a statement in support of her petition. She is accompanied by Tom Waterson.
Thank you for inviting me to attend the meeting.
For the very reasons that you have outlined, I find it simply unacceptable that people should have to consider their ability to pay a parking charge in order to keep an appointment with a consultant or clinician at an NHS hospital. However, given that your petition refers to "excessive car parking charges", do you think that there is a minimum charge that would be acceptable?
The word "excessive" comes from a Health Department letter that was issued in 2004.
But you do not think that a certain charge is acceptable.
Unison Scotland feels that, where a fly parking problem has been identified and evidenced, a charge might be levied. For a number of years, St John's hospital in Livingston has charged £1 per visit. However, people who earn less than £10,500 pay nothing. We are not opposed to car parking charges per se.
I realise that some people use hospital car parks for reasons other than visiting the hospital, but I know from experience that a hotel in a similar situation, for example, provides a parking token to hotel residents while charging non-residents for using its car park. Could not the NHS introduce a system in which people who wanted to visit the hospital would not be charged for parking, whereas people who did not want to visit the hospital but who wanted to use the car park would be charged?
That is a possibility. However, the car park needs to be maintained and staff have to be employed to handle controlled parking. The system at St John's hospital works very well.
Like you, convener, I strongly oppose car parking charges at hospitals. If the argument is that our society needs such charges, one real anomaly is that parking at shopping centres throughout Scotland does not cost a penny. Moreover, people can choose which shopping centre to go to whereas, because of greater specialisation, the same is not true of hospitals. What do the witnesses think of the suggestion that responsibility for car parking should be moved from the hospitals to the Minister for Transport? I feel that the minister has done nothing to make it easier for patients to access hospital and, under my proposal, he would be charged with ensuring that patients' overall transport needs, which would include car parking needs, were embraced.
We would welcome it if NHS boards' budgets were increased to cover that. After all, someone has to pay for such measures. At the moment, the boards are underfunded.
Do you agree that we should switch the financing of car parks from the health budget to the Minister for Transport's budget? I feel that hospitals should not pay a penny to provide car parking facilities.
With respect, I think that the money can come out of any budget, as long as it goes back into the health boards' budget to ensure that they do not have to pay for the measure. The problem is that our health boards have to pay for controlled parking.
I agree that that is totally wrong. Not a penny of that funding should come out of the health boards' budget. However, if the Minister for Transport is charged with finding that money, he has a range of options open to him. The minister is talking about options such as congestion charging and car parking charges at shopping centres, which could finance hospital car parking facilities and keep them free.
Three years ago, we surveyed staff, patients and visitors. We received several complaints about excessive car parking charges but no complaints from St John's or the Western general about the £1 charge. That is where we obtained the evidence on which we base our view. We are not against car parking charges per se where a problem with fly parking is evidenced, but not one health board that charges has shown us evidence of that.
You talk about the £1 charge. I pass the Western general on coming into Edinburgh and, if I wanted to, I could easily park there all day for £1. No one would monitor that, although I could be there all day. That does not strike me as a good system. A better system would involve controlling parking by issuing a card with an appointment card.
I doubt whether someone would pay for that.
The issue that you raise—car parking charges—is a serious matter throughout Scotland. You are right that the Executive published guidelines in 2004. We have spoken about the cost, which may be £1 or £10. Does Louise MacLeod think that the excessive car parking charges that she and others pay deter not just women, but everyone, from returning to work in the health service?
Absolutely. On many a day, I thought, "Why am I doing this? Why am I coming here?" Sometimes, I had to ration my lunch, because I could not afford to go to the canteen. I had to take simple sandwiches and eat really mediocre food. People used to comment on the lunch that I ate because I could not afford the canteen. I had to choose between paying the car parking charge and having a decent lunch. Sometimes, I had to skip lunch—it was as simple as that. Some students left the course because they could not afford the car parking charges. University staff were very sympathetic to us, but they could do nothing. They would say, "It's a private car parking company—what can you do?"
I think that you are right to say that people are deterred from entering the health service. They should not have to choose between eating lunch and parking their car.
The anomaly exists because the private finance initiative contract for Edinburgh royal infirmary is exempt from the HDL guidance.
Will you explain the exemption?
The HDL that Malcolm Chisholm issued was not retrospective, so any existing PFI contract was exempt. That means that Meteor Parking, on behalf of Consort Healthcare (Edinburgh Royal Infirmary) Ltd, can charge £10 a day and £46 a week. It will not allow the people of Edinburgh, the Lothians and Scotland to see how much money it spends. A request was made at last week's Health Committee meeting for Consort to open its books; I repeat that request. We believe that it is taking probably more than £3 million a year from the people of Edinburgh, the Lothians and Scotland.
I did not realise that other companies are exempt under the PFI, not only Consort. Throughout Scotland, that will affect most PFI contracts. That is interesting; I did not know that.
Neither did the Scottish Executive at last week's Health Committee meeting.
There you are—if the Executive does not know, who does? The Executive makes the rules—or is supposed to, anyway. We should look into that. Perhaps we will take that up individually in the Parliament.
Disabled car parking was also discussed last week. I was concerned when a representative of NHS Lothian defended Consort and Meteor by saying that they did not charge for disabled car parking. Technically, that is true. The disabled people themselves are not charged for car parking, but Consort charges the health board for those spaces. We have to pay for them out of our budget.
It is unbelievable that private contractors are doing that. I am sure that the Health Committee will look into that, after the revelations that were made at its meeting last week. You are basically saying that you do not know how much profit Consort makes on the Edinburgh royal infirmary PFI, which the petition mentions, and that it will not open its books to you.
That is correct.
Thank you for that information; I find it astounding.
We have traffic wardens. The roads that surround Edinburgh royal infirmary are public roads. However, the car parks are private and we have no remit within them.
Do you have other examples of what you regard as excessive charging throughout Scotland, such as in other car parks that Consort operates?
Consort operates only within Edinburgh royal infirmary. However, Meteor—the company that runs the car park on Consort's behalf—runs numerous car parks, such as Edinburgh airport car park and numerous city centre sites in Edinburgh, at which it is cheaper to park than at the royal infirmary.
I am specifically interested in other hospital sites because I am in accord with my committee colleagues that it is outrageous that people are charged. In essence, there is a postcode lottery on whether people are charged for hospital car parking, depending on which hospital they go to.
There appears to be a problem in Tayside. The chief executive of the new Forth Valley PFI is on record as saying that there will be no car parking charges there, which we welcome. Everyone is concerned that there is a need for charges because of fly parking, but no one has come up with any evidence of a need. We would support it if it was evidenced.
Does the money that Consort makes from the car park return to NHS Lothian or does it go straight into Consort's pockets?
I have no idea, because it will not show us the books. Consort gets £42 million a year in rent for the building. That is open because we have to pay it the rent and our books are open.
In view of the revelation that some aspects of the guidance do not apply to certain hospitals, perhaps you can tell me whether other parts of the guidance are universally applicable. For example, under the guidance, boards are supposed
It is a secret for Edinburgh royal infirmary, but the health board's books are open for St John's and the Western general, as they are throughout the country.
So that is another example of the guidance not being applicable in one place.
No. The guidance is applicable, but it is not followed through. It was clear in what the Scottish Executive Health Department said last week that it does not check whether the guidance is being followed.
The guidance says:
That should apply everywhere. It applied recently when Lothian NHS Board decided that it is only fair that the people who work at its headquarters—people who earn more than £100,000 a year—should pay something for the use of a car parking space. However, the car parking space will still be reserved for people. The board is in consultation with us on that, but we have made it quite clear that we will not accept any charge over and above the £1 charge that is currently in operation at St John's.
We are not having much luck with the guidance being adhered to, but I will soldier on. The next paragraph in the guidance states:
At Edinburgh royal infirmary, dialysis patients—this is a good example of how the guidance is applied—do not pay car park charges but a charge is paid for them that comes out of the health board budget. However, as Louise MacLeod clearly demonstrated, that part of the guidance is not applied to staff, students or staff in training.
Student staff are a good example of people for whom there ought to be a concessionary rate.
I should add that many patients are elderly and do not know what they are entitled to.
Another issue that Mr Waterson mentioned previously is the requirement in the guidance that states:
At Edinburgh royal infirmary, disabled spaces are available, but the health board pays Consort for the use of those spaces.
The final and perhaps most significant point in the guidance states:
Exactly.
Turning briefly to another aspect of hospital car parking, I associate myself with the convener's remarks but I also want to raise other concerns. Hospitals can sometimes be bad neighbours for residents who live nearby. In my constituency, visitors who drive to the Victoria infirmary impinge perhaps excessively on residents by parking in surrounding streets. I also have experience of difficulties in the west end of Glasgow, where the fact that Yorkhill hospital and the Western infirmary are in close proximity to each other tends to have a negative impact on surrounding residents. Have national health service managers given enough thought to the level of car parking provision and to access issues more generally? We seem to have a habit of building our hospitals in the wrong places where they are not accessible by all modes of transport.
Not only do we build them in the wrong place, we build them in the wrong way by using private money rather than public funding. I think that, in general, hospital managers attempt to get as many car parking spaces as possible, but the number of car parking spaces at Edinburgh royal infirmary, for example, had to be slashed because of the City of Edinburgh Council's green transport policy.
I totally agree with the convener's comments and with what seems to be the consensus of the committee. It is an absolute disgrace that hospitals charge for parking. I do not know whether the charges are excessive, but it is a disgrace that any company should seek to make a profit from the ill health of the general public by charging visitors and those who work at our hospitals.
I have been at the hospital for only two years and four months and I have just completed my training. Obviously, the hospital was already there when I started. I happily accepted a placement there thinking that it was a great flagship hospital, but I was unaware that there was no parking concession. I could not keep up with the car parking charges, which I felt were detrimental to my career. It has made me think strongly about where I go from here.
From reading the papers, whether the Daily Record or the Edinburgh Evening News, and coming to this committee or the Health Committee, one would think that car parking charges had been introduced in just the past few weeks. Unison has been campaigning since 1997, initially against the car parking charges that were proposed for Edinburgh royal infirmary at that time. We took the matter to our MPs, our MSPs and our councillors. Everyone still says that it is a disgrace, but you have the power to do something about it, so I suggest that you do it.
It is the Executive that has the power to do something about it.
I apologise. The Executive can do something about it, but I suggest that the Parliament can wield its power. Everyone agrees that car parking charges are a disgrace, but all we ever hear is people saying that it is a disgrace. We ask that you actually do something about it.
We hear clearly what you say. Perhaps we are fortunate to represent constituencies in which hospitals do not charge for parking. Although we are aware of the general issue, there is no impact on people in my constituency who have to visit Wishaw general or Hairmyres hospital, which are public-private partnership hospitals that do not charge for parking.
When the Transport (Scotland) Bill was progressing through Parliament, I proposed amendments to the effect that we should not have car parking charges at hospitals, but they were defeated by all my colleagues and only one MSP supported me at that time. I am glad that the pendulum is now swinging the other way.
The Western general only recently started running its £1-a-day scheme, which is the same as the one at St John's. In fact, work started last week on the Western general car park. People visiting the Western general pay £1 a visit compared with £10 a day at the Edinburgh royal infirmary. Is it dear concrete there? I do not know.
Everyone is gobsmacked by the evidence that we have heard. Will you clarify that Edinburgh royal infirmary is the only hospital of all those built under PPP and PFI contracts that does not disclose what is on its books?
On car parking?
Yes. Do other PPP and PFI hospitals behave in the same way? The convener said that the PPP hospital in his area does not charge for parking.
Should Wishaw and Hairmyres now decide to charge for car parking, they would not be subject to the guidance. Their contracts were signed prior to April 2004. Those two hospitals in Lanarkshire, Edinburgh royal infirmary and Stonehaven are excluded.
The reality is that we are where we are now. The Health Committee will have a meeting to discuss the matter on 20 June. The convener suggested developing a token scheme. Is there any mileage in developing such a scheme for those whom the Scottish Executive believes should not need to pay?
Yes, there is.
Is that ground that the Health Committee could explore as a means to resolve the problem?
We would support such an approach. The money has to come from somewhere. We do not mind if Consort pays for it, because it has enough money to do so, but other health board areas should be supported by the Executive.
The problem of which budget to take the money from would be one for the Executive to solve.
Exactly. The money has to come from somewhere. If we ask a hospital not to charge but to maintain its car parks, the money will come out of patient care.
We know that the Health Committee is addressing the issue. We have heard evidence this morning that I hope it can use. If members agree, we could refer the petition directly to the Health Committee in support of the work that it is doing on the issue. The Health Committee will get the Official Report of our discussion this morning for its information, so that it can form part of its deliberations.
The Health Committee will consider the issue at its meeting on 20 June. I want to send the petition to the Health Committee, but I am loth to let it go. I would really like to write to Consort and ask it why it will not disclose its books. You are saying that there is an issue about the legislation. Does the committee have the power to write to Consort to ask it to disclose its books?
As I have said, the problem is that if we decide to give the petition to another committee it becomes the role of the other committee to do that type of thing. We could ask the Health Committee to consider the issue that you raise, but we could not do it ourselves. If we give the petition to the Health Committee, it becomes the Health Committee's property and it is for that committee to take the issue forward as it sees fit. However, there would be no harm, when we send the petition to the Health Committee, in asking whether it could make the type of inquiry you suggest.
I agree with that proposal. The matter must be addressed. We should add as a rider to the Health Committee that it should ask Consort how much money it makes and to open its books.
Are members happy that we take that approach and send the petition to the Health Committee?
Duchenne Muscular Dystrophy (PE965)
Our next petition this morning is PE965 by Dean Widd, on behalf of Parent Project UK Muscular Dystrophy (Scotland), which calls for the Scottish Parliament to urge the Scottish Executive to ensure sufficient funding and resources are in place to combat Duchenne muscular dystrophy and to ensure that the care requirements of those with the disease are met. Before the petition was formally lodged it was hosted on the e-petition system, where it gathered 2,171 signatures.
Good morning. As you said, we represent a charity called Parent Project UK, which was set up a few years ago. All the office-bearers are parents of boys with the disease, so, as you can imagine, it is a highly motivated group and we are proud to be part of it.
Thank you for allowing me to speak. My son has Duchenne muscular dystrophy and I am going through the process of getting my house adapted with Stirling Council. My son was diagnosed three years ago and we started building then, because we knew that we must prepare for his mobility problems. There was a grant of up to £12,500, eligibility for which was means tested. Stirling Council said that we would get a percentage of that sum to build an £80,000 adaptation to enable my son to live independently.
As you mentioned, the Parliament debated Cathie Craigie MSP's motion on muscular dystrophy last week. The availability of grant in Scotland was compared with its availability in the rest of the UK. The Deputy Minister for Health and Community Care responded at the end of that debate. Have you had a chance to read the Official Report of what the minister said? If so, have you identified any gaps in what he said?
I had a brief look at the minister's response just the other night. It did not dwell on means testing. The situation in Scotland is a postcode lottery because each local authority offers a different level of funding grant. Although the funding that is available does not come under the disabled facilities grant, it is located within the council grant system. There are discrepancies in the amounts that are awarded, with the result that some families are not benefiting. Parents who cannot afford the adaptation work are suffering poverty. It would be fine if all parents of children with muscular dystrophy had bungalows built for them to provide for their disabled children and their siblings, but even though housing associations throughout Stirling are regenerating housing in the area, the accommodation is no good because there are not enough rooms to support the family needs of a disabled child.
I invite members to make points or to ask questions.
What is it about the treatment of boys with Duchenne muscular dystrophy in England and Wales that means that they have an extra 10 years compared with boys with the condition in Scotland? Will you give a brief explanation of the difference in the treatment?
The difference lies in the provision of care to, and the assessment of the needs of, each individual client with Duchenne muscular dystrophy, the approach that is adopted and the treatments that are available to those children. Boys in Stirling with the condition have died at the age of 13. Although one or two boys in Scotland with DMD are living into their late 20s, provision is poor compared with Newcastle, where all patients with muscular dystrophy receive treatment in the same centre. The treatment in Newcastle is much more satisfactory than it is in the north of Scotland, by Thurso, where there is a boy with Duchenne muscular dystrophy. Because PPUK and the Muscular Dystrophy Campaign are close-knit organisations, we are in touch with many parents who have boys with DMD. The situation is the same across the board—everyone complains about the provision of care.
You are saying that the difference is purely a function of the care that the boys receive rather than the hospital treatment that they get.
It is a bit of both. The staff input is important, as well. Although the staff in Scotland are very sincere in their work, much more research needs to be done on Duchenne muscular dystrophy. Because there are only between 200 and 300 boys with the condition in Scotland, their treatment seems to be getting missed somewhere along the line. A parent in Scotland is entitled to take their child to attend two appointments a year with a paediatrician, who assesses the child's mobility to determine whether there has been any decline or progression in their condition. Basically, the children are just given steroids and their heart, blood pressure and peak flow are monitored. In Newcastle, children with the same condition are observed closely and their physiotherapy input is marvellous. My son has a good physio, but he does not see her often. We have to do my son's exercises at home every night to prevent his muscles from tiring or stretching.
The level of care is also an issue. Every child in the Newcastle area gets the same level of care because they all attend the same centre of excellence. However, parts of Scotland are less populated and some local authorities and health boards do not fully understand the level of care available.
The date of diagnosis is also important—I imagine that that is a problem up north. Sarah's doctor did not mention the possibility of muscular dystrophy for at least two years. Various other theories were thrown up—viral conditions, blah-de-blah.
If funding here were made as available as it is elsewhere in the UK, would there be carers to provide the care required?
Training would be required for that, so perhaps the money should also go towards training. I do not want to pre-empt what Dr Wilcox will say a week today, but he recently came back from Denmark and he will have a lot to tell you about how the Danish health service helps boys and young men with muscular dystrophy. Denmark's population is similar to ours, so come on Scotland.
If you know about it, we would be happy to hear some preliminary findings today. This is our one opportunity to discuss them with you.
For young people with the condition, the average life expectancy is 19 in Scotland and 29 across the border, but when I spoke to Dr Wilcox on the phone he said that in Denmark the average life expectancy is 37 and that there is one young man who is 47. In Denmark, all young men who have Duchenne muscular dystrophy and who are over the age of 23 live in special accommodation with two permanent carers. The number of kids and young adults involved is small; why can we not do something similar here?
I thank the witnesses for coming here to give evidence. I am stunned by the age differences you have mentioned. Perhaps we should say that Denmark is a small country but an independent small country. That may have something to do with why it can provide such great care. However, it would not be fair to go into the politics of it.
No. When people see their general practitioner or paediatrician, they go to the mainstream hospital in their area, but the local paediatrician sees all the boys in the catchment area at the same time, twice a year.
From the written evidence that the committee has received and from what you have said, I would not say that a vast amount of money is needed. Would you say that a vast amount of money is needed to bring the care that children in Scotland receive up to the standard of care that children receive in Newcastle?
Because we do not work in the health service, it is difficult to say how much would be needed to bring the service here up to the standard in Newcastle. You would need to go through the NHS channels for that information and to ask the professionals at the hospitals.
I think that the Scottish muscle network could help with that, if it was to be continuously funded. That would allow everyone and anyone throughout Scotland to log on and find out about symptoms. If parents were worried or if a doctor was seeing a boy and did not know what was causing muscle failure, they could find out. At the moment, some doctors do not know, for example, what course of steroids to offer. It took me two years to find out that my son had Duchenne, and that was in Glasgow. We must raise the levels of care and awareness and ensure that people know about the disease, which is affecting 250 boys in Scotland.
I was going to ask about the Scottish muscle network. Is that the network that Dr Wilcox has set up and which he and his wife manage?
Yes.
You are saying that, although we do not know what it would cost to bring care in Scotland up to the standard of care that children receive in Newcastle, if the SMN was funded through the NHS by the Scottish Government, as research into Duchenne was undertaken, people would be able to log on and get information much more quickly and easily.
Yes—and everyone would have the same amount of knowledge.
The Westminster Government invested £1.5 million two or three years ago in a four-year research programme, but that money is finished now and the Government is not going to give any more money. The most common form of Duchenne is caused by a gap in the gene and the researchers at Hammersmith are trying to make what they call molecular patches, which are obviously not real patches, but patches that fool the body into jumping the gap in the gene. That work is well under way and clinical testing will be happening there soon.
Every parent must have access to information about what is going on, otherwise it is just a waiting game.
It is quite heartbreaking to watch as the disease develops.
I have a couple of questions to better my understanding of what is happening. Eileen Fidelo referred to research that is being undertaken into DMD. The chief scientific officer in Scotland is not funding any research into DMD or muscular dystrophy in general. Where is the research being carried out and at what level?
The research is being carried out by Professor Francesco Muntoni who works from Hammersmith, in London. As I said, he is halfway through a four-year research plan on molecular patching.
There are different forms of gene deletion in muscular dystrophy. Down in England, work is being done on stem-cell treatment that relates to the exon 51 gene. However, because the boys have different gene deletions, any particular treatment will be available only to some of them. That is the reason for having the DMD registry—we know the exact numbers of boys with the condition in Scotland and the rest of the United Kingdom and which of them would benefit from the exon 51 treatment. That is all I can say on that, because the researchers are doing the rest—we are just the candidates.
There are about 50 different strains of muscular dystrophy—it is bewildering.
Some of the strains are genetically inherited.
The research is very much in the early stages. Gene research is big now, but we would like some of it to be focused on what is a very needy group of young people.
I turn to another aspect of the petition. What level of adaptation of their homes do people need to carry out?
My son needs full access to the lower half of the house. He needs a bedroom with en suite facilities, with either a specialised bath or shower, and he needs access to the kitchen. My funding officer from Stirling Council said that my son does not need access to the kitchen, but I asked him where my son would eat. I do not want him to be isolated in his bedroom. He needs full access to the lower part of the house. If he is isolated in any room, he cannot live independently.
Among the many issues that you have raised today, you have mentioned the requirement for specialist wheelchairs. I have dealt with a constituent who needed a particular type of wheelchair. We met the Deputy Minister for Health and Community Care—then, Rhona Brankin—who was sympathetic about the issue of specialist wheelchairs. Some years ago, a petition on wheelchairs came to the committee, which resulted in a review of wheelchair provision and a consultation document. Are you aware of that document?
I know that Westmark in Glasgow provides wheelchairs to people who need them throughout Scotland and that Whizz-Kidz and Barnardo's Scotland have joined up to improve the provision of seating facilities and wheelchairs that help posture. That is a big issue for boys with Duchenne because they cannot sit up properly and need to be supported. They, along with people who have other disabilities, need better wheelchairs to help their posture.
Ministers have not yet come to a final view on the consultation, so this is your chance to stipulate clearly which wheelchairs you would like for sufferers of DMD. I do not want to pre-empt the committee's decision, but I imagine that we might write to the Scottish Executive. If you are after a particular sort of wheelchair, we could ask for that to be taken into account.
Because the wheelchairs come from the health service, through Westmark, only certain types of chairs are available—they are just basic, normal wheelchairs. My son has already had a manual wheelchair and has just been reassessed for another manual chair. When the boys start to use electric wheelchairs to manoeuvre, they will spend the rest of their lives in those chairs—until they die, basically—so the chairs must be suitable. Parents sometimes have to go out and buy electric wheelchairs, which do not come cheap.
The document that was mentioned—"Moving Forward: Review of NHS Wheelchair and Seating Services in Scotland"—is on our agenda, because a petition on wheelchairs has been submitted to us. The Scottish Executive has still to respond to the independent review, so input can be made in respect of the document.
The wheels grind exceeding slow, do they not?
This is more a comment than a question, but I have done the arithmetic and £30,000 multiplied by 250 comes to £7.5 million in a year. That is a big figure to you and me, but it is not a huge amount of money for health service and local authority budgets.
That would be the mandatory grant for adaptations.
If it represents people's having higher life expectancy, it is worth it. I have the greatest sympathy with you. The Scottish Executive would have to provide additional funding to local authorities, but it is having considerable difficulty doing that at the moment. Should the committee move to recommendations?
I was going to suggest that. Having heard all the important evidence that has been given this morning, do members have views on how we should progress the petition?
We could seek the views of the Scottish muscle network, the Chief Scientist Office, NHS Quality Improvement Scotland and the Minister for Health and Community Care. Thereafter, we could seek the witnesses' views on the responses that we receive.
Are members happy with that proposal?
As John Scott said, we will provide you with the responses that we receive and will welcome your comments on those responses. We will consider the responses and comments together when we look again at the petition. Thank you for bringing it to us this morning. That was the last oral evidence that we will take this morning.
Thank you for having us. The meeting has been valuable.
Renewable Energy Technology (Installation) (PE969)<br />Small-scale Energy Generation Equipment (PE837)
We continue with consideration of new petitions. PE969, from Alan Kennedy, calls on the Scottish Parliament to urge the Scottish Executive to promote and encourage the development and installation of micropower renewable energy technology in business and domestic premises and to set targets for doing so.
Petition PE837, from Neil Hollow, calls on the Scottish Parliament to urge the Scottish Executive actively to use its influence to ensure that by the year 2020 all buildings in Scotland, including domestic, commercial and government buildings, are fitted with at least one type of small-scale energy generation equipment, that such equipment should be brought within permitted development rights and that no charges for connecting to the grid should be made. At its meeting of 7 December 2005, the committee agreed to invite the views of the petitioner on the responses that had been received. A response has been received from the petitioner and has been circulated to committee members.
This is an important issue. We could seek an update from the Scottish Executive on the promotion of micropower renewable energy technology, which would help to move things forward a little.
Do members agree that we should write to the Executive seeking that information?
7:84 Theatre Company (Closure) (PE970)
Our next petition is PE970, by Chris Bartter on behalf of 7:84 Theatre Company, calling on the Scottish Parliament to urge the Scottish Executive to act urgently to prevent the closure of 7:84. Before being lodged, the petition was posted on the e-petitions system, where it gathered 1,635 signatures. The petitioners have said that all funding to 7:84 Theatre Company will cease in August 2006, which will result in its closure, as it will not be able to compete for ad-hoc project funding in 2007. We are joined by Cathy Peattie, who has an interest in the petition. Do you want to comment on the petition, Cathy?
I am not an expert on 7:84, but I feel strongly about it and wanted an opportunity to speak this morning. I understand that the committee has discussed Borderline Theatre Company, which is in a similar position. I know that members have fairly comprehensive notes from 7:84, but it is worth noting that it is a special organisation that has been touring Scotland for 33 years. The funding for 7:84 runs out in August 2006. It is too late for any appeal to the Scottish Arts Council and too late to apply for new funding, so it is crucial that something happen quickly.
Members will remember that we discussed Borderline Theatre Company a few weeks ago. We were amazed that it was losing funding because it was too audience focused. If art is not about being focused on the audience, I am at a loss to understand what the Scottish Arts Council thinks it should fund. I know that the situation came about as a result of a change in the criteria which, in effect, makes it difficult for groups such as Borderline and 7:84 to receive funding. We have taken up the issue. I am interested to hear whether members think that we can progress 7:84's petition as we did Borderline's petition.
I agree. It is tragic that a project that people like is going to be turned off. The fact that the goalposts have been moved in midstream is an issue of real concern. I have received briefings on the issue—Cathy Peattie has perhaps received the same information. For many years, there have been consistent attempts to stop 7:84 in its tracks. This is the first time we have got to this stage. The decision makers have changed; officials are in the driving seat, whereas lay members were much more involved in the past. That is a cause for concern because lay involvement in decision making is always valuable. Officials do not know everything and lay people quite often speak from experience.
I am sorry that nobody from 7:84 is here to give evidence, although Cathy Peattie has given evidence eloquently on its behalf. There is a link between the 7:84 and Borderline petitions, but also a slight difference between them in that one case is more urgent than the other. Basically, 7:84 will not receive any funding at all and, as Helen Eadie has rightly said, the Parliament will shortly go into recess.
That is okay. I hear what you are saying.
I support much of what has been said. The company is undoubtedly in a more difficult situation than Borderline is. However, my mouth is metaphorically hanging open at Sandra White's suggestion that a political agenda is being pursued. I was certainly not aware that it was. It would be interesting and would help the committee's deliberations if she could provide more evidence that that is happening.
I do not want to interrupt, but perhaps the SAC could give more evidence on that in the Parliament.
That is certainly worth considering. I agree with Helen Eadie that we should write to the Scottish Arts Council and do everything else that has been suggested.
I agree with what all members have said. In particular, I agree with Sandra White that snobbery and elitism are at play. Anyone who has gone to election hustings knows that you get a handful of people and a stone there. However, no one could deny that, at a 7:84 event, there is true democracy, people are totally involved and there is broad discussion. The company supplies something that is not found anywhere in mainstream politics, and I am concerned that it is easy to reach the conclusion that that might be why it has found itself in the situation that it is in.
Because of the seriousness of the issue that has been raised, I agree that inviting the SAC to give evidence would be desirable. However, the problem is the practicality of bringing representatives here. Our next meeting is our last before the recess and will be in Jedburgh. I am more than happy to invite the SAC to speak to us in Jedburgh, but I do not know whether that would be possible. The next meeting is in September, so we face a practical difficulty. I concur that we should ask the SAC to speak to us, but I must make members aware that we have only one meeting between now and the summer and it will be in Jedburgh.
I agree totally with Sandra White, Rosie Kane and others that a major problem with the Scottish Arts Council is clear. It should come here and justify its decisions. I know that we cannot impose our will on the SAC but, if it cannot appear until September, could we ask it not to take such actions until it has come to the Parliament to justify them, given the committee's reservations and concerns?
We would get into difficulty with that.
I accept that the matter is difficult, but we could ask.
We cannot intervene in such individual decisions. We can certainly make the SAC aware of the committee's strength of feeling; perhaps that would influence or hold in abeyance decisions. However, realistically, we cannot ask the SAC not to make decisions. We do not have the authority to do that. We can make the SAC aware of our concerns, which it may or may not consider. That is as far as we can go.
The convener spoke about building audiences. It is worth noting that the audiences that 7:84 and Borderline build do not go to the theatre every Friday night. Those companies work at the grass roots to encourage people to go to the theatre. That is special and very few companies do that. The petition is about maintaining political theatre.
We are definitely going into uncharted territory for the committee, but I am not against that. I am talking to Jim Johnston about ways to address members' concerns. Not every member has said that they will go to the Jedburgh meeting, which I encourage members to go to. We are in serious danger of being unable to hold that meeting if members do not start to confirm their availability. I must point out that we could invite the SAC to Jedburgh but discover that members were not present.
I entirely agree. I have already said that I am going to Jedburgh—I have a map so that I can find my way when I drive down. I would be more than happy if we could write to the SAC and ask for representatives to appear at our next meeting, which is in Jedburgh. Your suggestion is spot on: if the SAC's representatives cannot come to Jedburgh, we should have a special meeting at which they can answer our questions.
Who is the SAC accountable to? Perhaps I should know that, but other committee members might.
It is accountable to the minister.
I associate myself with the support for 7:84. Reading the background report made me feel old, because I remember going to its first productions in the early 1970s.
That is the point that I was making. Given the committee's strength of feeling, we have to think beyond what we would normally do, and I am more than happy to try to do that. We would have to leave it up to the clerks to liaise with the SAC to find out when representatives were available. If 28 June is the best option, I would have no difficulty in going for that, but we must bear it in mind that that comes down to all sorts of things, such as resources and the availability of committee rooms. I suggest that we allow the clerks to try to get the SAC along to the committee before the summer recess. The alternative is that we meet the SAC in September, by which time it might be too late for 7:84.
If our best endeavours are not successful and it is not possible to arrange an evidence-taking session before the summer recess, the members of the SAC and the officials who work for it ought to examine the Official Report of this meeting and take careful note of the strength and unanimity of the committee's feeling. If, later this year, something unpleasant should happen to 7:84, it will not remove any accountability obligations from the SAC.
That point is well worth making. Are members agreed that we should write to the organisations that have been suggested and invite the SAC to come and discuss the issue?
Housing (Scotland) Act 2001 (Compliance) (PE971)
Our final new petition this morning is PE971 by David Minnery, on behalf of East Renfrewshire tenants and residents federation, which calls on the Scottish Parliament to urge the Scottish Executive to review the implementation of the Housing (Scotland) Act 2001 to ensure that local authority landlords are complying with the legislation, particularly with regard to tenant participation and consultation in the management of housing and related services. Before being lodged formally, the petition was hosted on the e-petitions system, where it gathered 228 signatures.
I have a question rather than a comment. The petitioner refers to
When we write to the various organisations, we can certainly seek their response to the suggestion that has been made.
This very serious allegation needs to be substantiated.
We can ask the petitioner to provide evidence, but in the meantime we can send the petition to various organisations for their comments.
We have to write to East Renfrewshire Council not only on the point that Charlie Gordon has raised but on the fact that certain inspection reports have identified a number of areas, including consultation with tenants, where the council needs to make improvements. We should also seek the views of the umbrella body Communities Scotland; the Tenant Participation Advisory Service Scotland; the Convention of Scottish Local Authorities—although I note that it has not responded to our correspondence on previous petitions—and the Scottish Executive.
Are members happy with that?
We will seek clarification from the petitioner on Charlie Gordon's comments and, if required, send the information to those organisations to make them aware of the accusation. In any case, we will also seek the petitioner's views on any responses that we receive. Are members agreed?
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Current Petitions