Shared Space Schemes (Moratorium) (PE1595)
Good morning, everyone, and welcome to the second meeting of the Public Petitions Committee in 2016. I ask everyone who is present, including members, to switch off their mobile phones and BlackBerrys because they can interfere with the sound system.
Agenda item 1 is consideration of new petitions. The first petition is PE1595, by Alexander Taylor, on a moratorium on shared space schemes. Members have a note by the clerk, the petition, a Scottish Parliament information centre briefing and a number of submissions in support of the petition. I also highlight to members the fact that some wording was inadvertently missed out of the petition and that the action that it calls for is a moratorium on all shared space schemes until safety and equality concerns have been addressed.
I welcome the petitioner, Alexander Taylor, to the meeting. It is great to have him here. He is accompanied by Margaret Hutchison. I invite him to speak to the petition and then we will ask questions and discuss the issues that he raises.
Good morning, everyone. First of all, I thank the staff of the Public Petitions Committee, who have been most helpful throughout the process. I commend the Scottish Parliament for its democracy in allowing me to put my petition to the committee.
I will go back to why we have come here. You have been briefed on shared space schemes—[Interruption.] Bear with me, gentlemen, I have an audio prompter. I said that I commend the Scottish Parliament for its democracy but, conversely and ironically, I am here to complain about the lack of democracy in local government. Councils have imposed shared space schemes on communities against the wishes of the vast majority of the people. Shared space has recently been described as
“the largest systematic institutionalised discrimination against blind people the UK has ever seen”.
That is quite a statement. As you may be aware, Lord Chris Holmes recently produced a report that tells us that 35 per cent of the public avoid towns or areas where shared space schemes are in place.
We—blind people, visually impaired people, disabled people and people with dementia and other disabilities—can make our way around our towns perfectly well. I do so using a cane and Margaret Hutchison does so with her guide dog. Other people can cross roads safely by pressing a button. We have all been brought up with the green cross code: many people with dementia rely on that.
East Dunbartonshire Council proposes to remove all traffic signals, pedestrian crossings, safety railings and road markings and, in some cases, kerbs and pavements, and to replace them with courtesy crossings, which have a raised section on which people can—I hope—cross the road safely. I am afraid to say that we certainly would not want to use those crossings. Traffic is under no legal obligation to stop at them. There are now silent electric cars. I would not be so irresponsible or stupid as to put my foot on a carriageway totally unaware of what is travelling in either direction.
I am being denied access to my town centre, and that is in breach of my equal rights. The council is in breach of its public sector equality duty, as we can no longer access our town centre. Many other disabled people—not only the blind—are excluded. Over the past 18 months, we have talked to the council and constantly told it about our safety fears, but it has not listened to anything that we have had to say.
The schemes are coming about because councils are getting, via the Government and Sustrans, funding to which strings are attached. It seems to be imperative that councils put in a shared space scheme, which, as I have said, means removing traffic lights and so on. Councils are so desperate to get the funds that they will do almost anything, and we are seen as a real problem. We have told them that we are unhappy about crossing roads and that we will not use the crossing points because they are simply unsafe. Trying to cross the road in front of traffic is like playing Russian roulette.
I am sure that members are aware that such schemes are all over the country now. There have been accidents aplenty—hundreds of them. My colleague Sarah Gayton has made a submission. She had links to many of those accidents, which have been left out of the submission; I hope that we can get them to the committee if it needs them. She also made a film on shared spaces. As I said, there have been accidents aplenty, which is why we are concerned about the safety issue.
Scotland has a unique opportunity to go it alone and to follow its own policies. We are aware that Scotland wants to give disabled people equal rights. That is our right, and we demand it. We will not be treated as second-class citizens who can no longer go near our town centres.
I am afraid that there has been a lack of consultation. The councils have claimed that we have been consulted all the way along the line, but that just did not happen. We were part of the equality design forum: there were two meetings of that group and we were there to discuss paving and kerbing materials. The council has made a big play of our being so influential, but we made absolutely no difference to the scheme whatsoever—we were never consulted and it was a fait accompli.
10:15I know other councils in which construction work actually started before the public were aware of what was happening. For example, a scheme recently opened in Kinross and traffic is going through there at more than 40mph; people are frightened to come out of their houses and the kids have to do a big detour to get to and from nursery school. Margaret Hutchison has colleague with a guide dog in Dumfries. As a result of the scheme down there that person can no longer access her town centre. Her dog is totally confused because there are cars parked all over the place and there are all sorts of problems.
That situation is reflected throughout the country. Such schemes are not a success anywhere, despite what many people claim. I hope that the committee will read the submissions, which are from many influential organisations, including Guide Dogs Scotland, the Royal National Institute of Blind People and Inclusion Scotland. The public have also written many letters because they are very concerned for their safety. People are being denied access to their town centres and we are being discriminated against.
I hope that the committee will listen to my petition and act on it.
Thank you, Mr Taylor. You have covered many areas that I am interested in, particularly in relation to the amount of consultation that takes place. When there have been town centre redevelopments in my area, the local authority has made great play of the fact that it has had discussions with local disability groups and the wider community to consult on the layout of the new town centres.
I have to be honest; I have not had the level of concern raised with me that appears to be driving your petition. Do you think that the issue is peculiar to some local authorities? I know that you are based in East Dunbartonshire and I am talking about the area that I cover, which is North Lanarkshire and South Lanarkshire.
People have raised concerns with me about the developments in town centres, but not so much in relation to accessibility. In my area, accessibility has improved. Is the problem with specific local authorities, rather than right across the country?
The problem appears to exist across the country. Unless there is a controlled crossing, we cannot cross the road safely. In the proposed scheme for Kirkintilloch, there will be one controlled crossing at the extreme south end of the scheme. If I were at the other end of the town and wanted to cross the road, I would have to take a detour of about half a mile to cross at a controlled crossing. I do not use anything other than controlled crossings, as is the case for many people.
Each local authority is allowed to interpret schemes as it thinks appropriate. The problems that we face in Kirkintilloch—if you are blind, disabled, or deaf-blind—are likely to be exactly the same in Kinross or wherever. I have been trained with my guide dog. I am a resident of the town and was born and brought up there. I have been able to walk around my town and get to places independently with the use of my guide dog, and I would walk nearly everywhere. However, because of the scheme, I cannot do that anymore.
The scheme is confusing for my dog. He has been trained for just under a year and has been specifically trained to find controlled-crossing poles, so that we know where to go.
I use the cone that is underneath the control to let me know that the green light is on, because, although I have a little bit of sight, I still cannot see whether the green man is lit. Sandy Taylor has absolutely no sight whatsoever—he sees nothing; everything is black—so he needs that cone. There is a lady in our group who is like Sandy and has a guide dog, and those dogs are trained to find the controlled crossings. Guide dogs are also trained to stop if the person walks out into the road and there is any moving vehicle coming, so I could be stuck in the middle of the road with traffic coming from four different directions.
I feel that I face challenges—as Sandy does—every day of my life, and I really do not need this to make my life more difficult. As a resident of the town, I am entitled to be able to walk down the street just like anybody else and to have reasonable access to my town centre. However, under the present scheme, the council deems it reasonable for me and for Sandy, who is totally blind, to have to take a long detour to get across the town safely.
The council is bound to make reasonable adjustments to enable us to cross the roads safely, but its adjustments actually make us take a longer and more circuitous route. Also, the council has not listened to anything that we have said about crossing the main shopping area.
As Sandy said, the consultation was not meaningful; we found out about the traffic scheme purely by accident, because the council did not provide any documentation or details of the plans in formats that we could read or know about, and we were the ones who insisted on consultation of groups such as Guide Dogs Scotland. That did not come from the council. It is therefore not correct for the council to say that it consulted; it consulted only after we insisted that it consult.
The consultation really was a sham. The council had already made up its mind about what it was going to do.
I do not doubt your experience; I am just trying to establish how widespread the problem might be, given that I have not experienced it.
It is the same all over the country. Councils are having to do U-turns and to reinstall controlled crossings because the new system does not work. It is very costly to do that.
I have no more questions, so I open up the discussion to colleagues.
Good morning. You mentioned the lack of democracy in local authorities, and I have some sympathy with that view, given the situation in my neck of the woods in recent years. In my days as a local councillor, I saw plans for a major housing development of hundreds of houses—it led, eventually, to thousands of houses—that intended to introduce Dutch-style living streets with no kerbs, for example. However, following consultation, that proposal was ditched—there was a U-turn, if you like.
The responsibility lies with local authorities. Do you not feel that the interpretation and application of the policies that are set out in the “Designing Streets” document and associated UK guidance are a matter for individual planning authorities in drafting development plans or deciding on applications for planning permission? Access can be classed as a material consideration when a planning application comes up.
I have studied “Designing Streets”. There is not a great deal in there on the rights of people who have sight loss and so on but it does state that provision must be made—in other words, blind people must have controlled crossings. Transport Scotland no longer recommends zebra crossings for the very reason that visually impaired people cannot be sure that the traffic has stopped, but at least a zebra crossing has a legal compulsion on a driver to stop, whereas the courtesy crossings do not. However, it is clear in various documents that there must be an alternative means of crossing the road for blind and disabled people and my council is not providing that alternative. It is either a courtesy crossing or nothing.
For clarification, when you heard of your council’s plans, had planning approval already been granted? You said that you could still submit your views to a consultation that happened later. Was that before or after planning permission was granted?
Planning permission was granted on 30 April. Since then, the council has formed the equality design forum—which is rather badly named, I have to say. However, the consultation was over relatively minor—although still important—items such as paving materials and tactile marking. The major decisions had all been made.
I do not want to put words in your mouth, but they were just ticking a box.
Yes, absolutely. It has been a box-ticking exercise. They ticked the boxes but, from the equality impact assessment report, you would think that they had done a great deal of consulting. I am afraid that that is not the case. No meaningful consultation took place because they did not listen to any of our safety concerns.
If someone expects me to take a chance and cross at one of those courtesy crossings, I am afraid that they are greatly mistaken. My life is a bit more valuable than that.
One of the big problems with “Designing Streets” is that these are guidelines; it goes back to what you were saying about interpretation. Our council has said to us on several occasions that they are only guidelines. The problem is what can be done if, as in our case, the council does not follow the recommended guidelines in “Designing Streets”. Where is the recourse for us?
It was about five years down the line from the Kirkintilloch master plan before we were even consulted about it. The big problem is that there is no regulation of councils. They seem to have carte blanche to do whatever they want.
Sustrans seems to be the driving force behind all these schemes. You may or may not have heard about the cycle lanes in Milngavie and Bearsden, in East Dunbartonshire. Apparently they are an absolute disaster. The local inhabitants are rebelling because of that.
As I said, Sustrans seems to be the driving force behind putting in all these schemes. All that we are asking for is a safe means of crossing our main street. I am afraid that that means safe puffin crossings. If able-bodied people want to use the courtesy crossings, that is fine. Just give us suitable, controlled crossings, which we are used to at the moment. It is not just blind people who are affected—I keep saying this—a lot of other people are affected too.
Drivers are not happy about the situation because someone could step out right in front of them and it is not their fault if they hit them. A nine-year-old girl was killed in Swindon and she was blamed for her own death because she thought that she had priority when crossing one of those courtesy crossings. A lot of people all over the place have thought that.
Because the councils tell them that.
Our council tells us that we have priority at one of those courtesy crossings, but in law that is not the case.
10:30
We have some examples of the woonerf concept—I think that I am pronouncing it correctly—in the Netherlands, which seems to work. Have you contacted any blindness charities in Holland to ask about that?
No, I personally have not, but even the Dutch people are falling out of love with the shared space idea.
Those examples have been introduced since the 1970s, I believe.
Oh yes.
I have a friend from the Netherlands who has said that all those schemes were put in place for the environment. They were not implemented in retrospect, as the schemes here have been.
Even the first proponent of shared space schemes—I cannot remember the chap’s name—said that his schemes were designed for quiet residential areas and not for busy urban areas. The very first scheme that was put in place in Holland happened to be outside a residential school for blind children and, when it first came into being, they were bussed in to school because of the safety implications.
Good morning to you both. I have two or three questions, but I am conscious of the time, so it would be helpful if you could try to be concise.
To help facilitate the discussion, and my understanding of the issue, I would like to know—although I know that you are here representing the argument against shared space—what problem it is that shared space is designed to solve.
We have been told various things. First, we were told that it was to speed the traffic up, then we were told that it was to slow the traffic down. We were also told that it was an environmental situation and a green issue. As Margaret Hutchison said, we have a very low carbon footprint and it will increase under the scheme.
Would your position in the first instance be that, whatever the merits or otherwise of shared space, it is not clear that there is a simple definition of the public good that such schemes are trying to serve?
We are aware that Sustrans champions the cyclist, the pedestrian and public transport, but largely it champions the cyclist. We understand that the Scottish Government is looking for 10 per cent of journeys to be made by bicycle by 2020. It is an environmental issue, from my point of view.
I have looked through the many submissions, which are very powerful, in support of your petition. I am trying to understand the issue. Angus MacDonald’s question almost supported the view that shared space is associated with new developments. As I understand it, you are talking about a retrospective fit in Kirkintilloch. Out of interest, where in Kirkintilloch is the scheme? I know the town.
The scheme is on the main street that runs right through the centre of the town. There is a four-way junction at that point.
Can illustrate the scheme for the committee’s benefit? I am perhaps asking you to be expansive, but you can try to be concise. How does the street look now and how will it look with the imposition of the shared space scheme? What will be the key differences that I, or anybody here, would notice between the situation now and the fit of the shared space scheme?
There will be cosmetic improvements—there is no doubt about that, and we support that. Basically, all the traffic lights, safety railings and pedestrian crossings will be removed, so one could say that there will perhaps be less clutter, but at what cost? There is a cost to safety and in denying us access to the town.
Do you know how many such schemes involving a retrospective fit similar in nature to the one that you describe as being proposed for a busy main part of Kirkintilloch have been proposed elsewhere in Scotland? Do you have wider knowledge of how many of those schemes are immediately planned?
I believe that there are around 10 schemes in Scotland at the moment, although I might be wrong about that.
So there are 10 in place just now.
Yes, there are at least 10. There is one in Dumfries and, as I said, a new one went in at Kinross at the end of last year. There are schemes in Inverness and Aberdeen. I believe that there is a proposed scheme for Inverness costing £11 million and more than £1 million has already been spent on consultation fees there. There are a number of minor schemes around, but Kirkintilloch is a busy main street.
I understand that. You mentioned Lord Holmes of Richmond. Forgive me for not knowing this, but who is he?
Lord Chris Holmes is a blind former Paralympian. I should have mentioned this, but he came up with the Holmes report, which was called—
Yes. I have the submissions and the reference to that. I was just trying to understand a bit more about him.
Right. He had a debate in the House of Lords on 15 October, in which many people supported his call for a national moratorium on shared space schemes until safety and equality issues have been addressed.
Does his report draw on experience of such schemes from across the whole of the United Kingdom?
Yes.
He also did a retrospective survey of blind people on the impact that such schemes had had on them, which found that the majority of them no longer come out and are back in their houses again. They had their freedom but it is now being denied and they are frightened and insecure because of that.
Is the conclusion of his report and the principle underpinning your petition against shared space in principle, or is it that you are looking for the shared space scheme to include specific guidance and regulations that protect the interests of partially sighted or blind people?
It is about disabled people in general. We demand that we have controlled crossings—that is the key.
I think that I understand. Thank you very much.
I know Kirkintilloch fairly well and I know the crossing at the south end of the main street that you are referring to. Has there been any discussion with the local authority about why it went for the shared space option rather than full pedestrianisation of the main street? A number of local authorities have introduced shared space schemes, but the difficulty is that pedestrians and particularly those who are visually impaired or who have other disabilities do not fully understand—because it is not fully explained to them—the level of access that vehicles have on those shared streets. Was there any discussion of full pedestrianisation?
Yes, there was, and it was rejected. The council said that shopkeepers did not want that, but the main reason was that the bus people, who are putting money into the scheme, want to retain the street as a bus route.
Blind people and other disabled people are fully aware of what a courtesy crossing is. We are fully aware of what the repercussions will be when the traffic lights are removed, because there was a trial that went on for a month. The traffic lights were switched off and all the railings were taken away, and utter chaos ensued. Fights nearly started and there were many near misses. People stayed away from the town and turnover in shops went down by 25 to 30 per cent.
The council had four options to choose from. One was total pedestrianisation, one involved controlled crossings, one is the one that has been chosen and I cannot remember what the other one was. They were all discussed and then put before the full council, which opted for the one that we are talking about, which was the cheapest option.
As I said, Sustrans is the driving force and it wants shared space. It wants that concept, which is the flavour of the month and is happening all over the country.
I understand that courtesy crossings operate only if drivers and others are prepared to show courtesy to pedestrians. Some drivers forget to be courteous in relation not only to such crossings, but to all crossings.
I am intrigued by the argument made by the council based on the shopkeepers’ claim that they did not want full pedestrianisation in the area. My understanding is that there is very limited street parking on the main street in Kirkintilloch. I know that there is a problem with the car parking availability in the town centre, with the main car park being outside the small Tesco store just off the main street. Does the council propose to impose speed restrictions on vehicles going through the town centre? There is no point having a semi-pedestrianised area if you still have the volume of traffic travelling through the main street at the same speeds.
Using those courtesy crossings means making eye contact with drivers. Clearly, we cannot do that. We cannot make eye contact to get the nod to say, “Yes, you can cross the road now.” That is also a problem for many people in wheelchairs, because they are too low down and, particularly when it is very sunny, they cannot make eye contact. There are all sorts of problems.
As a former retailer—I had a shop in Kirkintilloch—I can tell you that parking has always been a problem in Kirkintilloch and it remains so today.
We have exhausted our questions. We now need to decide how to take the petition forward. I am open to suggestions as to who we should contact to make inquiries.
I have a number of suggestions. If we could contact Lord Holmes, I would be interested to establish what the reaction has been to his report and the UK Government debate to see whether that has led to any practical suggestions or actions. I would like us to write to the councils that we have been advised today have schemes or are considering schemes, just to understand the motivation for the proposal and the consultation process that they understood to have taken place.
We should also write to the Scottish Government, because it appears that there has been no review of “Designing Streets” since its introduction in 2010. I note a response from the cabinet secretary in December to a point raised by our colleague Dennis Robertson, where he says:
“The point that Dennis Robertson has raised is valid, and every planning authority—indeed, every department of every authority, including central Government—should take full account of it.” —[Official Report, 10 December 2015; c 7.]
In a way that is a call to arms without an instruction to do anything specific. I am interested to know whether the Government feels that, in the light of the petition and any experience that there has been, there might be a need for something a little more comprehensive in terms of a guideline or instruction for councils on operating and consulting on such schemes.
I agree. We should also contact the local authority organisations and the Heads of Planning Scotland to see whether we can get an overview.
I am wondering whether it would be possible to contact the equivalent of the Convention of Scottish Local Authorities in the Netherlands to find out how they addressed the issue when they introduced the woonerf concept.
That is a reasonable suggestion. We should always try to tap into examples from elsewhere.
Can we write to Sustrans? If they are promoting such schemes we can ask them for their views on shared space and controlled crossings.
Those are all very good suggestions. Although, as Mr Taylor said, we have had submissions from some disability organisations, usually the Scottish Government and others would contact the mobility and access committee for Scotland to discuss the issues. It would be worth asking for its view, given that it is a consultee on almost all of those—if it is not, it should be. We could also contact the Royal Town Planning Institute Scotland to establish its take on the matter.
Mr Taylor, we will contact all those organisations and compile their responses. We will then contact you to let you know what those are and you can respond to them and make comments on the information that we get back. We will look at the petition again in due course and see how we can take it forward. Thank you for your evidence.
I forgot to say that there are three councils in England that are about to be taken to court on equality grounds.
We will keep an eye on that and see whether there is any progress on the legal side. Thank you for your petition.
10:45 Meeting suspended.In Care Survivors Service Scotland (PE1596)
The next new petition is PE1596, by Chris Daly, Paul Anderson and James McDermott, on In Care Survivors Service Scotland. Members have a note from the clerk, the petition and a SPICe briefing.
I welcome Chris Daly and Paul Anderson to the meeting, and I invite Mr Daly to speak to the petition for a few minutes, after which we will discuss the issues that have been raised. Over to you, Mr Daly.
Paul Anderson and I were going to split our brief opening statement, convener.
That is fine.
Thank you.
Good morning. I am Chris Daly, and my colleague Paul Anderson is with me this morning. We are service users of In Care Survivors Service Scotland, and I thank the committee for inviting us to present our petition about the group.
For some time now, we survivors or care experienced in Scotland have been engaged in a process of interaction with the Scottish Government, the centre for excellence for looked after children in Scotland, the Scottish Human Rights Commission and service providers, and we key stakeholders have worked together to come to a consensus on remedies for in-care abuse. It has been challenging, but we have made progress through thematic discussions and local engagement events throughout Scotland. At those events, we have worked cohesively on the issues, including the public inquiry, the support fund and the time bar and other legal aspects.
Working together, we have managed to address the issues and come to a consensus on most of the issues or remedies. The SHRC’s 2010 framework on remedies for in-care historic abuse has underpinned the themes and the interaction process. The Scottish Government has made a number of commitments with regard to the public inquiry, the time bar and the support fund, although I regret to say that the issue of compensation has not been addressed.
We are raising these matters today by asking the Scottish Parliament to urge the Scottish Government to support the continuation of In Care Survivors Service Scotland in the context of the new service model. We are concerned about the uncertainty over the continuation of ICSSS services and the distress that that is causing us survivors.
I will outline briefly the challenges that we are being presented with in continuing the positive journey towards ameliorating some of the hardships that people face in their day-to-day lives following their experience in care. The current ICSSS model, which has been running for seven years now, is a person-centred integrative approach with therapeutically trained staff; it has provided vital services to survivors of in-care abuse and is highly valued by those who use them. ICSSS provides an intensive person-centred service, and it takes the service to survivors.
The new broker model has some very positive aspects that survivors welcome. The commitment of £13.5 million over five years is significant, and among the range of issues that are to be addressed, which include education, employment, accommodation and physical as well as mental health, are areas to which survivors have been drawing attention for some years now.
We consider that the new broker model has the scope to embrace the work of ICSSS as a specialist contribution to the needs of survivors, which would allow the continuation of the valued ICSSS services. With that approach, we feel that there is less potential for harm to be caused by services being disrupted.
Another issue of contention that concerns us is the transitioning of service users and ownership of client files or case notes. ICSSS has been ordered to hand over all client records to allow the new broker service to risk assess individual clients. Our understanding is that the client has legal ownership of files, but that needs to be clarified, given the concerns raised with the petitioners by survivors who are service users of ICSSS that confidential and highly sensitive case files are to be passed around.
We who are care experienced have had some difficulty with care and treatment under the national health service model. Labels of borderline personality disorder and narcissistic personality disorder have been unhelpful; we understand that clinicians are currently working on specific diagnostic labelling for historical abuse survivors, which we hope will help with future care and treatment. As petitioners, we note that a person working in the field of trauma has suggested that
“if we say it’s fear and sadness”
that are legacies, that would be a better explanation of a natural human reaction to being traumatised.
I look back at the brilliant interaction process with CELCIS and the Scottish Human Rights Commission, and I have to say that we were not consulted by the Scottish Government or during the interaction on the decision that ICSSS would lose its funding in March. We had understood that the service would continue, enhancing the new service and vice versa, and we believe that the essential, dedicated service and the team of development workers could be a key component of the survivor support fund service or the new broker model.
ICSSS and its team are an essential element in survivors leading full, healthy and independent lives. The Scottish Government talks about an enhanced and expanded service; the relationship with ICSSS and the new broker model could be a symbiotic one, with the new broker model being enhanced. The issue is also one of survivor choice, with survivors being enabled to strive and thrive. Essentially, it is all about getting the best possible outcomes for survivors.
Over the seven years of ICSSS, survivors have grown to trust it. For some, it has provided the only continuity of support but, most important, it saves lives. Safety and security lie at the heart of what ICSSS provides in times of crisis, and continuing the counselling and emotional support that it provides would be the best way of managing transitions and enhancing the package on offer to survivors.
Before I hand over to Paul Anderson, I just to want to cover—
Mr Daly, I must point out that you have had about 10 minutes and you are severely eating into the amount of time that will be available to committee members for questions. If you want to pass over to Mr Anderson or continue with your statement, you will eat further into and curtail the time that we have to understand the situation.
I apologise, convener. The issues are complex and many sided.
I understand that, but we can get into the complexities of the issues by asking questions. We do not have to hear everything in your statement.
In that case, I will hand over to Paul Anderson, who will make a short statement that will give you a more personal slant on using the service.
That is fine.
Thank you, convener, and I thank everyone else for giving me the chance to speak.
I am a survivor of child abuse. I have with me a dossier containing 19 letters from people in different professions from all over Scotland, supporting the funding of In Care Survivors Service Scotland. One of the letters is from Police Scotland; I asked Police Scotland to meet our group, and its letter outlines clearly the importance of continued funding for survivors.
With regard to how I feel about the situation, I note that the 19 letters include ones from the Lord Provost of Edinburgh, the Rt Hon Donald Wilson; the chair of the Scottish Human Rights Commission, Professor Alan Miller; head of social services in Stirling and Clackmannanshire, Val de Souza; and Vox Scotland. The Vox Scotland letter, for example, talks about bringing in your own experiences to ensure that the emotional aspect remains at the forefront of decision making. In Care Survivors Service Scotland treats survivors, including me, as human beings, and no one can put a price on what that means to us as survivors.
In Kirkintilloch, where I live, there are no services for me. I have knocked on many doors and been refused help; indeed, I have a letter in the dossier from my councillor in East Dunbartonshire Council confirming that there are no services for me there.
I know of a survivor in the Borders who is in the same position as me and cannot access any services either. The national health service has informed me that I will not be given cognitive behavioural therapy, because it will not work; I was also informed that I would not get any psychotherapy, because I had it before, and it failed. I was told that after another suicide attempt. I have basically been told by the NHS that if I have another episode, I will get an hour’s help and nothing more. While I have been with In Care Survivors Service Scotland, however, all I have had to do during a crisis is pick up the phone, and someone is there. I have not had to wait for an appointment with a general practitioner or wait on a list to see a counsellor or a psychiatrist.
The broker model would give what survivors want. That is fine. Unfortunately, counselling would be given for only a limited time—perhaps up to 12 weeks—and if that is to be the case, it would be wrong to expect survivors to trust that broker model. In how short a time can you expect survivors to come to trust a new counsellor to talk about, of all things, child abuse? Would anyone in this audience or anyone you know who was being abused trust a new counsellor that quickly?
11:00I have borderline personality disorder that I have been told is untreatable, and I also have, among other things, post-traumatic stress disorder. The group therapy provided by In Care Survivors Service Scotland has given me friends, allowed me to empathise with other survivors and their trauma and has helped us all to value each other’s experiences.
The survivors in ICSSS trust their counsellors and therapists, but that has taken a long time to happen. Given that ICSSS counsellors already have long-term experience of listening to survivors, would it not make sense to give them jobs under the broker model that was originally agreed? Doing so would save time and expenditure.
The loss of ICSSS would be devastating for me and others. I have lost count of the number of times I have cried about it and the amount of sleep I have lost, and I am on more medication now, because my heart is in trouble.
The Scottish Government has a duty of care to provide the best possible care for the most vulnerable people in our country, some of whom might even be just outside this building. I therefore make this appeal for help: the Scottish Government knows as well as Survivors Scotland that survivors who use ICSSS love the service. It works—just look at all the evidence from professionals who support the service. It is not broken, and it does not need to be fixed. People say that one size does not fit all, and that is right. ICSSS is good for some people, and the broker model is good for others.
I put this to all of you, including those who might be watching this broadcast: I believe that the broker model can provide a good service. It can provide help in ways that ICSSS cannot. However, ICSSS can provide services that the broker model cannot. Please allow the broker model and ICSSS to work together, because they can enhance each other. The potential to save lives is likely to be the greatest that Scotland will ever see in its history of helping survivors of child abuse.
Mr Daly and Mr Anderson, thank you very much for that information. It is obvious that the service being provided is very valuable and that you are genuinely concerned that it could be at risk as a result of a reduction in funding.
Is the number of people accessing the service increasing or decreasing? I am talking not about the length of time that people who are already receiving the services are continuing to receive them, but whether the number of people going into counselling is on the increase or whether it has been falling as people have gone through the service.
I do not have the facts here, but what I have picked up suggests that because the funding is going to stop, no more referrals are being made. As a result, the statistics have been stable. I am not entirely sure what that figure is, but more than 900 people might well use ICSSS.
So we are talking not about a reduction in funding but a complete cessation of funding. Is that correct?
As I understand it, yes.
Are you aware of any recommended replacement to which the funding has been redirected? Is there anything in the pipeline?
What we are trying to say is that this service, which has been providing very good and at times life-saving support in times of crisis for survivors of in-care abuse for seven years now, could enhance the new model and that there is room for the existing service, along with the trained therapists, to transfer over to the new service. We believe that there has to be room for this therapeutic model within the new broker service.
Going back to your previous question, I think that there is an issue about the number of people who access ICSSS at the moment. There is likely to be an increase in the number of people seeking support during the public inquiry that is currently being set up and which I believe will be chaired by Susan O’Brien. As was the case at the time of the national confidential forum and various other bits of this journey, survivors will need support during the public inquiry. They need support at different points in time.
I should perhaps declare an interest as a strong supporter of Open Secret, which is based in my neighbouring constituency of Falkirk East. I believe that its service, which is second to none, has helped 900 survivors since 2009.
I have been aware of the difficulties that Open Secret has faced for some time, and the change to the delivery of ICSSS services will undoubtedly have an impact on the charity. As we have heard, the charity clearly does not agree with the change in service delivery; it has dug its heels in and refused to tender for the new service as it believes that the new broker model will significantly change the type of service that is provided, particularly given that none of the specialist survivor agencies with substantial experiences of historic abuse has managed to secure on-going funding.
The briefing on the petition says that
“survivors currently accessing the ICSSS delivered by Open Secret can continue to receive the support that they need”
through
“existing services provided by Open Secret.”
If Open Secret has had difficulties with its core funding and has made no attempt to tender for the new service, how are you going to be able to continue to provide that service if clients ask for it?
As I have said, we think that ICSSS, in its current form, could enhance the new service. That would not mean that the service would have the overall tender for the new broker model, but it would be part of it.
So you are looking for the money to be distributed in both directions.
Yes.
Your reference to the issue of the legal ownership of records raised a concern in my mind. You are right to be concerned about the fact that the records might be, for want of a better term, bandied about. I believe that, at the moment, the records are held by Open Secret.
They are.
Will Open Secret will be required to release those records to whichever agency takes on the case?
It has been ordered to do that, but I am not sure about the legality of that approach. My understanding is that the ownership of the files lies with the client. I have consulted people working in the field on that issue and the issue of confidentiality, and I understand that there is no obligation on Open Secret to hand over those highly confidential and personal records to anyone involved in the new broker model.
I can understand the concern of survivors about those files being released to other agencies. Perhaps the committee can check the position.
I am happy for us to discuss that.
Like Angus MacDonald, I am aware of the work that Open Secret has done and know that it originally tendered to deliver the services of ICSSS seven years ago. What has been the total cost of delivering those services over the past seven years?
I put in a freedom of information request to the Scottish Government about facts and figures, including the costings for some things, but the Scottish Government did not get back to me. However, I found out through another source that the interaction process and the action plan cost £88,000 or thereabouts. I am not sure about the costs of running ICSSS via Open Secret.
In response to a question from Jackie Baillie in June last year, the cabinet secretary said that the Scottish Government had announced funding of £13.5 million to develop a dedicated support service for survivors of in-care abuse. We will determine, through further questions to the Scottish Government, how that £13.5 million compares to what is being provided at present. Like Angus MacDonald, I am keen to see the ICSSS model continue, because it has clearly worked for the 900 users of that service and it provides invaluable support to those who seek advice, information and help. Any change to that format would lead to disruption for those who rely on the service and it could result in the issues that Mr Anderson raised in his opening remarks.
Has there been any discussion about ICSSS tendering for the contract to continue to deliver the services that it has been delivering up to now, as part of what Angus MacDonald rightly identified as a twin-track approach to providing support for survivors?
After discussions with survivors and development workers at ICSSS, we came up with a plan for how ICSSS and the new brokering model could co-exist in a way that would enable them to enhance one another through a symbiotic relationship between the two types of service. However, we understood from recent talks with the Scottish Government that there is to be a full withdrawal of funding from ICSSS as Open Secret delivers it—from March, there will not be any further funding. We hope that the Parliament will urge the Scottish Government to continue this life-saving support service for survivors.
Who is promoting the brokering model?
The Scottish Government.
It is the Scottish Government’s preferred alternative to ICSSS.
The Scottish Government says that the model came out of the interaction process, through the consultation process—which is, in essence, what the interaction was. We survivors, the Scottish Government, CELCIS, the SHRC and the service providers, including some of the institutions that were implicated in the historic abuse, came to an agreement on certain aspects of what we called remedies to historic in-care abuse in Scotland, and one of the things that we came up with was a support fund. However, after consultation, at the end of the interaction, the Scottish Government went off and created this support service, which we feel is different from what was consulted on and what was discussed around the table during the interaction process, which was a support fund.
Elements of the brokering model include some of what was discussed, such as a family holiday fund, access to driving lessons to give people a better chance of employment and issues to do with rehabilitation and resettlement. However, we were not specifically looking for a service; we felt that we were being consulted on a fund.
11:15
I understand that people who develop schemes to deal with survivors of abuse might come up with things such as holiday funds and money for driving lessons. Fundamentally, I want to know about the vital and essential support that survivors require, which may not be a holiday fund or a driving licence. It is about having someone that they can speak to, at any time of the day when they feel that they need support. It is about the ability to interact with support workers, rather than being told that there is not a support worker for them, but that they can have some money for a driving lesson and so they should go away and have that driving lesson.
What is the view of the survivors? I assume that they would like to see ICSSS continue in its present form—providing the support that it does—rather than moving to the kind of brokering model that the Scottish Government has cobbled together. “Cobbled together” is the best way to describe it.
I think that the brokering model is good for survivors who want it or need it. I clearly remember attending meetings last year that were arranged by certain professionals, where I listened to Scottish Government civil servants who gave me absolute assurance that the funding would continue. I have correspondence from my MSP—Fiona McLeod—as well as from Alexandra Devoy and Heather Brown. They all said that nothing would change and that the service would continue. We believed that. I also remember being told that the counsellors would keep their jobs.
A period of two or three months passed. The agencies that invited us to those meetings did not consult us about the new broker model that was created. When meetings were later arranged for us to attend and the broker model was discussed, I sat there wondering where it had come from. Initially, it was never discussed. The situation was that there was a new model in place, and we could take it or leave it.
The agencies that arranged those meetings asked us to trust and confide in them on very sensitive matters. They asked us to help them, and we did that. When the broker model came out, not one person on the panel at the meetings mentioned ICSSS’s funding continuing. I wondered why not and I asked myself what had changed. They never consulted us to say what was going to happen. That made me—and other survivors from ICSSS, who attended the meetings—wonder why we were there. The broker model was not what had been discussed earlier.
When I listened to other survivors who attended those meetings, I wondered what it was about. Was I going to lose my counsellor? Was I going to lose the group work? Would the new broker model simply be a medical one in which someone would be assessed for CBT or psychotherapy or some other medical form? I will be blunt with you; please do not take it personally. Most of the survivors whom I have spoken to have been rejected from the NHS because they are regarded as untreatable. What is the sense of having a broker model that offers a medical approach that has already proved not to work for people with borderline personality disorder or post-traumatic stress disorder? It would make far more sense for the counsellors who have supported us over the years to keep their jobs, because we trust them.
On an issue related to that, last year I was one inch from stopping my counselling sessions. When we were told that changes were going to happen, I had a relapse. I was suicidal twice last year and I wondered why that was. Other survivors and I feel that we have been misled. We were given an assurance that things would not change, and then we were told that there was another model and that we could take it or leave it. That is what I have gathered from listening to other survivors.
The consultation and interaction process in which we discussed a support fund and so on was quite costly—£88,000—so the outcomes should have been what we all agreed as a consensus. For want of a better term, the Scottish Government should not have ran away with the ball and set up the brokering model without further consultation.
I do not disagree with you, Mr Daly and Mr Anderson. We are trying to draw out some of the issues that led to you submitting the petition. We need to know what questions to ask the Scottish Government, because it has come out with the broker model.
You indicated that the funding for ICSSS finishes in March 2016. Although there is an agreement that it will continue to provide support, it will clearly not be able to do so for long if it does not have funding coming in. When does the Government intend to introduce the broker model? Is it in place now?
I cannot answer that question. I am sorry.
I am not sure when the brokering model will be introduced. However, we were suddenly told that there would be a brokering model service and, in the same breath, that it was out to tender. The Government has been in discussions with organisations that look to gain the contract and is currently considering the matter, so I think that the model will be introduced sometime soon.
I am keen to get the committee’s views on how we take the petition forward. Angus MacDonald and John Wilson suggested that we ask questions of the Government. I assume that everyone is agreed that we write to the Government to try to establish exactly how we arrived at this point. We also need to contact the organisations that the petitioners have mentioned, such as Open Secret and the Scottish Human Rights Commission, to establish what their take is. Another organisation was mentioned—I think that it was CELCIS.
That is the centre for excellence for looked-after children in Scotland. It is the former Scottish institute for residential child care and is based at the University of Strathclyde.
It might be worth our while taking its views on board as well. It might have an input on the matter that would enlighten us.
Given that Barnardo’s helped to initiate the committee’s inquiry into child sexual exploitation—a year and a half ago, I think it was—it would be good to get its take on the situation, as well as that of CELCIS. Given that I have mentioned the committee’s inquiry into child sexual exploitation, I wonder whether it would be appropriate to contact the committee’s adviser for that inquiry, Dr Sarah Nelson, to try to get an objective view of the situation. I throw that in to see whether it is possible.
The inquiry related to a specific aspect of abuse.
Yes, but the former adviser would have a view that we would respect.
I have no issue with that, but I make the point that child sexual exploitation is a specific issue within the wider in-care abuse issue.
I get the feeling that there is a strong suggestion of a fait accompli. Is that factual? Were others consulted? We need to clarify whether it is a fait accompli in the sense that the Government did not consult anybody or consulted a limited range of people. Perhaps we should examine that.
We can ask who was consulted and whether the decision was arrived at beyond that consultation.
That might be helpful.
Given that it has taken us a number of years to get to where we are today, I hope that we can get an early resolution. I suggest that when we write to the Scottish Government we ask it what measures have been put in place to cover the period from the withdrawal of funding for Open Secret and ICSSS, in March 2016, until the brokering model is in place. I would be extremely concerned if there was a gap in service provision for individuals who need support. A number of survivors have been dealing with matters for decades, so we do not want to delay support any further. We could also ask whether the Scottish Government will consider continuing to fund ICSSS until a model that has been developed in conjunction with survivors and that everyone is happy to work with is in place.
That is definitely worth asking. Paul Anderson wants to add something.
It is about the consultation. At the meetings that I and others were asked to attend last year, we were given an assurance that the service would continue. However, after two or three months had passed, a new model was created. The press have been clever in saying that a Scottish minister has said that the broker model is what survivors need. I agree with that. However, I feel that there has been a failure in not consulting enough survivors who use ICSSS on whether the broker model is what they need. The majority of survivors who attended those meetings wanted the broker model, but I am suspicious that whoever sent out the invitations to those survivors perhaps asked them whether they agreed with the new model. I have no proof of that, convener. However, if you had been at those meetings when the broker model was discussed and seen the faces of the survivors who use ICSSS, you would have wondered what was going on. We were not consulted enough, and those who orchestrated the meetings would have heard the majority of survivors saying, “We want the broker model.” The survivors who use ICSSS were in the minority.
I will repeat the last part of my opening statement. Please allow the broker model and ICSSS to work together. They can enhance each other. The potential for lives being saved is likely to be the greatest that Scotland will see in its history of helping survivors of child abuse. We want both of them, because survivors have different needs.
We have heard that point, and we will certainly ask the Scottish Government for a response to it. I thank you both for coming here this morning and bringing your petition to the Parliament. We will give you the responses from the organisations to which we write, and we will continue to progress the petition with your co-operation.
I suspend the meeting again for a couple of minutes while we change witnesses.
11:28 Meeting suspended.Mycoplasma Fermentans and Autism (PE1597)
Our next petition is PE1597, by Bill Welsh, on Mycoplasma fermentans in regressive autism. Members have a note from the clerks, the petition and the Scottish Parliament information centre briefing on the issue.
Mr Welsh is joined by his constituency MSP, Ken Macintosh. I will give Ken Macintosh an opportunity to make a contribution at some point after we have heard from Mr Welsh.
You have a few minutes to introduce the petition, Mr Welsh, and we will then discuss the issues that you have raised with us.
Good morning and thanks very much for inviting me to contribute to the meeting. I have been here three times before, always on the same general subject of autism and the relationship of the measles, mumps and rubella vaccine to autism.
From 1998 to around 2005, thousands of parents marched, protested and campaigned in the UK and other countries regarding their child’s gradual withdrawal into autistic spectrum disorder following vaccination, and particularly MMR vaccination. As honorary president of a Scottish autism charity, I was involved in five marches in Edinburgh, one in Glasgow and a very big event in London that was attended by more than 10,000 parents. At the end of that march, six of us—five mothers of autistic children and I—were invited into 11 Downing Street, and Alistair Darling asked us whether we thought that the MMR vaccine is implicated in autism. He received the answer “Yes” six times.
No action followed that meeting in London, but public health bodies and the pharmaceutical industry went into a publicity overdrive. The public were assaulted in the media with more than 35 epidemiological studies from every which where—Denmark, Finland, Sweden and Japan—but the public health bodies omitted to tell the media or politicians that epidemiology is not appropriate for establishing causation. The Lancet said:
“causal association cannot be established by data from observational research alone ... If the mechanism of a disease is poorly understood ... Data from”
epidemiological
“research just cannot be used as the sole evidence to ... deny a causal link.”
The highly respected Cochrane organisation pitched in with a comment. It said:
“The design and reporting of safety outcomes in MMR vaccine studies ... are ... inadequate.”
I would like to illustrate that trickery using epidemiology with an example from the Scottish Parliament. In 2001, a debate was called on single vaccines as a choice for MMR, and Malcolm Chisholm, the then Deputy Minister for Health and Community Care, informed the Parliament that MMR safety was confirmed by a Finnish study that had followed up to 1.8 million children. Its conclusion was:
“no cases of autism were associated with MMR during this 14 year follow-up”.
The Finnish study is rightly infamous as an example of how epidemiology can be used—or misused—for deceptive purposes. In fact, only 187 children were tracked, not 1.8 million. When the author of the Finnish study, Heikki Peltola, was asked on the BBC whether his study was designed to identify cases of autism, he replied, “No.” The study was irrelevant. The British Medical Association and five royal colleges used that irrelevant study to mislead the Scottish public and the Parliament.
In short, the health bodies did not look—and they have still not looked—at the issue of a vaccine-autism link. The medical hierarchy has deemed that autistic spectrum disorder is solely a genetic condition. I have provided you with a graph, gentlemen. Please look at it, as it reveals the growing number of schoolchildren with an autism diagnosis over the past 25 years. In a few years, the number will reach a quarter of a million schoolchildren. That is not genetics at work.
The issue then entered a new phase—denial. The phrase “better recognition” was regularly wheeled out. Many of the children we are talking about cannot talk or have severe communication problems, so we are being told that, prior to 1990, doctors, parents and teachers did not recognise it when a child could not talk. Since the very beginning, public health bodies have demonstrated an entrenched reluctance to even contemplate that vaccination might be implicated in what we are witnessing.
Another favourite phrase is “changing diagnostic criteria”, even though the changes in diagnostic criteria were designed to reduce the numbers of children being diagnosed. Again, please look at the graph. Do you think that tinkering with diagnosis would create the massive rise in autism that we are witnessing?
In the meantime, in 2011, a robust and rigorous study was published in the USA. The California autism twin study concluded that at least 65 per cent of autism is caused by an environmental factor, but that revelation received no publicity.
I decided to do my own research. I started with my grandson’s MMR vaccine batch number. I then accessed the records from the MMR court case in London and I discovered that another 17 child litigants had the same vaccine batch number as my grandson and all were diagnosed autistic. I contacted a friend in Warrington and asked him to access his son’s batch number. It was a different number, but the story was the same—27 children who had received that batch number were all diagnosed autistic.
I investigated the history of vaccine batch contamination and I found important evidence in veterinary vaccines, where concerns have been raised for many years about contamination with Mycoplasma fermentans, which is a contamination associated with cell culture technology. Mycoplasma fermentans is a bacterial pathogen that is invisible to the naked eye. It lives within the host and has an affinity to the cilia and stereocilia, which are small hairs that exist in all mammals. If Mycoplasma fermentans enters the body, it will lodge in an area of cilia such as the auditory tract, the brainstem or the gut, and from there it will invade other cells to scavenge, causing a gradual deterioration in the host. Please—I ask you—read my scientific paper, which has been peer reviewed and published.
I then re-read Dr Leo Kanner’s original research paper from 1943 in the USA, in which he first identified 11 children with what he called a “new” and “very rare” condition that he named autism. Interestingly, seven of the children were thought to have been deaf, which is a common feature in the children whom we see today. More interestingly, cell culture technology was introduced to vaccine manufacture in the USA in 1930, shortly before those children were born. Kanner’s “very rare” autism is now more common than all other serious childhood conditions combined, following the introduction of a vaccine using cell culture technology multiplied by three—the MMR. Think synergy.
Mycoplasma fermentans is difficult to detect as it does not remain in the blood. It is intracellular and has no side walls, which makes it resistant to many antibiotics. That is where the problem of quality control in vaccine manufacture probably began.
My early hypothesis on the cause of regressive autism was placed on the internet by a parent and it was quickly accessed by parents in more than 45 countries worldwide. There is an awful lot of “better recognition” going on. I also contacted a number of universities by email but, so far, only one has responded. The response states:
“I am afraid the College of Medical, Veterinary and Life Sciences at the University of Glasgow has a strict set of research priorities. Your area of interest is not one of these. I wish you every success in your work.”
What set of research priorities in a civilised country ignores the cries of a quarter of a million sick children?
In view of the attitude of public health authorities to this tragedy that is affecting our children, I am requesting that the Scottish Government directly commissions a research project and informs universities that funds will be made available. I estimate that my hypothesis can be tested—using polymerase chain reaction and mannitol salt agar tests on a sample of, say, 100 children—at a total cost of under £100,000, with potential future savings to the Government of billions of pounds. The vaccination programme could then be made safe at long last. Thank you.
Thanks very much, Mr Welsh. I certainly feel ill at ease discussing this type of petition, because I am not a scientist or a geneticist. Basically, I am relying on—
I am not a scientist, either.
I am relying on the scientific evidence that is available. You mentioned that, when someone put information on the internet, it was accessed by people in 45 countries quite quickly. Do all those 45 countries use the MMR vaccine?
Yes, I believe so. They use vaccination generally. The issue is not specifically about MMR. It is mainly about MMR, but other vaccines are manufactured in the same way, using cell culture technology. However, the 45 countries will use the MMR vaccine.
I just wonder whether we have a chicken-and-egg situation. Are people looking to establish that MMR is the cause, or is MMR the cause and people are looking for information on it? Is it not the case that the person who first made the link between MMR and autism has been discredited quite substantially, as has the work that he did? Therefore, any link between MMR and autism has in scientific terms been completely rejected.
No. I am sorry, but the public health bodies have not looked at it. Dr Wakefield—the chap who was discredited, as you put it—actually visited the Parliament at my invitation and spoke to a number of MSPs, probably in this room. He has been struck off and exiled because he mentioned the MMR vaccine in his research. However, I am presenting a different hypothesis altogether.
I think that Wakefield was actually a decent man. I do not think that the public health bodies went down the right route after the court case took place in London. Decisions were taken to go down a particular route when, perhaps, they should have stepped back, sat for a year and looked at the issue until they came up with something such as my hypothesis, which answers all the questions that we might ask about how autism is being created in our society.
Dr Wakefield was not discredited—that is just part of the propaganda. I am telling you that the public health bodies have not looked at the issue. Doctors will not look at it because they know what happened to Wakefield, as you do, and they do not want it to happen to them.
I will open up the discussion to colleagues. I ask Ken Macintosh whether he wants to comment before I open it up to committee members. I do not see any indication from colleagues that they want to come in at present.
Thank you, convener, and thanks for the opportunity to join you.
I ask Bill Welsh whether any work is going on in Scotland to try to understand the statistically measured steep rise in the prevalence of autism here. What explanations are being offered for that? Is any work or research under way to try to explain or understand it?
11:45
As I mentioned in my statement, the explanations that are being offered are that there is better recognition and there are wider diagnostic criteria, but those are spurious excuses. We cannot explain such a rise without looking at environmental factors.
The problem that guys such as me and the parents have is that the medical profession is determined to look at autism and put it in a genetic basket, or a box called genetics. They seem to have incredible difficulty in accepting any other explanation. It has now been proved in America that 65 per cent of autism is not genetic but is caused by an environmental factor, but then the fear arises and people think, “Oh, gosh, we’re back to MMR again.”
We never resolved the MMR issue. We looked at one hypothesis. I spoke to Dr Wakefield and he said that his hypothesis was only one hypothesis. Here is another. It might just be me, but I think that mine is more persuasive than Dr Wakefield’s was.
What should the committee and the Scottish Parliament do to investigate further?
We have to try to find some way of getting the public health bodies to recognise that there is a problem here. You all have constituencies and you must know that there is a problem. If you speak to schools—to anybody in education—they know that there is a problem, and parents will tell you that there is a problem. However, we cannot get the public health bodies to say, “Here’s a hypothesis; let’s examine it”, because a word that I mentioned in my hypothesis closed all the doors, and that word is vaccination. Apparently, vaccination is sacrosanct and we are not supposed to question it. However, I am afraid that, if we are damaging hundreds of thousands of children, we really should be seriously questioning whether the vaccination programme is implicated in some way.
Do you think that autism is treatable?
I have to be very cautious about my answer. If my hypothesis is correct and regressive autism—I use the word regressive—is caused by a bacterial infection, by a contamination, then yes, it should be treatable. If we catch it early, it should certainly be treatable.
I have been in contact with a pharmaceutical company in the United States—I spoke to the owner—and it is developing a macrolide. I have been following this development for a number of years. When I asked whether the macrolide that the company is developing will be effective against Mycoplasma fermentans—the contamination that I have identified—they said that it would be very effective, but they asked me to contact the scientist in Australia who was trialling it. I contacted the scientist and he said that it would be very effective against Mycoplasma fermentans. Therefore, the answer to your question is yes. I think that it is treatable.
I am not too sure how effective it would be for people who have had the bacteria inside their bodies for the past 20 years or so, but for the children whom we manage to catch early, who have just started to regress into autism, I think that it could be 100 per cent effective.
It is important that we try to resolve the problem that has been identified with regard to children with autism, but what work should we be doing to try to avoid the bacteria getting into the vaccination system in the first place, and into children’s bodies?
I mentioned my research into the company in the United States that is developing a macrolide. That is the answer for the vaccination manufacturers, because if that macrolide was added to their quality control processes, it would eliminate any possibility of Mycoplasma fermentans being in the vaccine. That is my understanding of the situation. This particular contaminant cannot be 100 per cent removed using the antibiotics that are used just now. In trying to help the children, we can also help the vaccination programme. It is important to make that programme safe.
You are saying that the bacteria get into the system through the vaccination process. By tackling that process and making sure that we eliminate the bacteria before they get into the vaccination system, we will not then have to do follow-up work with individuals who are identified as having autism.
I know that you are trying to get the pharmaceutical companies and Governments to understand that we should be doing everything that we can to prevent the contaminant getting into the system rather than dealing with it once it is already there.
That is absolutely correct. It should not be in the system at all. It has been in the system in a small way since 1930, I think, but we probably now have the means, as part of manufacturing batches, to address that. If the vaccine manufacturers were to do that, the rate of autism would descend and we would have some sort of proof that that was the cause in the first place.
I was honorary president of a children’s charity in Edinburgh for many years. The main drive that I focus on is trying to help the children who have been damaged, because the heartbreak that is involved in that is, to be frank, unbearable at times. It is terrible when you see perfect kids who could sing and talk and can no longer do so. They have lost all their skills.
I invite colleagues to suggest what we should do. Is there any way that we can get some scientific analysis of the matter? The best place to start is to talk to the scientists, so we need to talk to the chief scientist and ask what the position is.
Can I interrupt you? I was refused an audience with a series of health ministers. They kept diverting me and one of the places to which they diverted me was the chief scientist. The interview that I had with him was one of the poorest and least successful in 20 years of fighting the problem, because the chap had not even read my hypothesis. I have lost confidence in an awful lot of the official bodies that are involved in the matter.
With all due respect, we would not be asking the chief scientist to review your work. I am suggesting that we write to him and ask what work needs to be done to make progress with the petition, if it is possible to do that. That is not exactly the same question as you were asking.
I can answer that question for you, because he told me that I would have to get a university to make an application to him. He did not want to know about me as an ordinary citizen. I went to the universities. I read to you the first reply that I had from a university, which was, “Oh no, it is not one of our priorities.” How do we change that?
I am trying to find a way of taking forward the petition and you are telling me not to do it.
I am not telling you not to do it; I am just telling you my experience.
In that case, we will do it and see whether the committee gets a different response from that which a member of the public gets.
I have a couple of suggestions, convener. Mr Welsh supplied a graph that extrapolates the incidence of autism in the United Kingdom. Could we contact the department of health in the European Commission to find out what the emerging incidence is in other countries throughout the European Union to see whether it is part of a similar pattern? That may or may not validate through different means the suggestion about extended diagnosis. If it is related in some way to the vaccine, the trend ought to be absolutely parallel and not unique.
I notice that the petitioner submitted a petition in March 2000, following which there was an expert group that concluded that there was insufficient evidence to support the hypothesised link between the MMR vaccine and autism. I know that it has been a subject of public discussion and concern over the years. That was around 16 years ago. I would be interested to know from the Scottish Government whether it has sought to establish at any point whether there is any further evidence or information that would allow a second expert group to consider the matter afresh or whether current practice simply relies on the views that were taken at the earlier point.
Those are legitimate questions to ask of the Government. Are there any other suggestions?
I am not sure whether I am allowed to make suggestions.
Yes, you can.
I suggest that, rather than simply asking for the views of the chief scientist and the Government for or against one hypothesis, we ask them what they are doing about the rise in the prevalence of regressive autism and to say specifically whether they believe that the rise can be explained entirely by better diagnosis. Further, not to question a link with MMR—Bill Welsh’s hypothesis—we should ask whether they are conducting or considering any research into the matter.
It is entirely legitimate to ask the question.
It is probably also worth asking the Department of Health, as well as the Scottish Government health directorate.
Yes.
We need to ask a series of questions in relation to the issue that you have brought to us, Mr Welsh. Thank you very much for bringing your petition to the committee. We will collate the responses that we get and send them to you. You will be able to comment on them and we will take the petition forward once we have gathered all that information.
Thank you very much for inviting me.
I suspend the meeting for a couple of minutes.
11:55 Meeting suspended.Adult Consensual Incest (PE1599)
Our next petition is PE1599, by Richard Morris, on adult consensual incest, or ACI. Members have a note from the clerk, the petition and a SPICe briefing. I think that everyone has had a chance to read the petition. Normally, we would ask the Scottish Government for its position on a petition, unless there were extenuating circumstances. Given that the Scottish Law Commission undertook a report on this issue as recently as 2007 and concluded that the majority view at the time “favoured retaining the offence” and “the current definition”, I suggest to the committee that we close the petition under rule 15.7 of the standing orders. There would be no value in taking forward the petition, because I cannot see that the position on the issue would have changed in the intervening period. I have had no indication at all that there is any desire to see that changed, but I am open to committee members either agreeing or disagreeing with me.
I am happy to support your suggestion, convener.
Having read the detail of the petition, I do not think that an argument is made that would justify the petition continuing because a public interest was being served.
I think that everyone agrees with my suggestion, and on that basis I close the petition.
Air ais
AttendanceAir adhart
Continued Petitions