Current Petitions
Magazines and Newspapers (Display of Sexually Graphic Material) (PE1169)
The next item on the agenda is consideration of current petitions. PE1169 by Margaret Forbes on behalf of Scottish Women Against Pornography relates to display of sexually graphic magazines and newspapers. Members have the clerk’s note, which is PPC/S4/13/11/5, but before I invite contributions I remind the committee—especially Jim Eadie, whose first Public Petitions Committee meeting this is—that we went into a lot of detail on this very relevant and pertinent petition some time ago and referred it to the Equal Opportunities Committee. The petition has now been referred back to us, which I have to say is probably quite an unusual step. Members should also be aware that the National Federation of Retail Newsagents has published guidance on the issue for newsagents throughout Scotland.
I have to say that I do not think that the committee can get any more mileage out of this petition. I therefore recommend that we close it—not because it does not have any value but because we have already dealt with it in quite a lot of detail and I see no window of opportunity to do more with it. I seek members’ thoughts on that.
I have been involved with companies across Europe for a long time. I have tried to understand the basis of the petition, but I have to say that we have almost an obsession with this type of thing, when the material in question is accessible on the internet. Moreover, why is it just about women? There are men in the magazines. Given that we have looked at the petition 13 times now, I agree with the convener that we should close it.
Do members agree or does anyone have a contrary view?
For all the reasons that you have highlighted, convener, and given that the Equal Opportunities Committee has decided that no further action is necessary, I think that the petition should be closed.
Obviously, we would like to thank Margaret Forbes for her efforts in lodging the petition.
Indeed.
Ferry Fares (PE1421)
PE1421 by Gail Robertson, on behalf of the Outer Hebrides Transport Group, is on ferry fares. Members have a note by the clerk, which is paper PPC/S4/13/11/6, and the submissions.
Rhoda Grant would have liked to be here today, but she is travelling to Edinburgh as we speak and so is unable to attend.
Obviously, the committee has considered a lot of issues around the Western Isles. As you will recall, we had a Parliament day in Stornoway and a number of transport issues were raised then. Angus MacDonald will probably agree with me that it might be useful to get the leader of Western Isles Council, Angus Campbell, to come and speak to us directly on the petition. Perhaps we could tie in other pertinent issues, such as public service obligations for the services to Benbecula and Barra, and wi-fi provision. Those three issues all affect the Western Isles.
I agree that the moment is opportune, given that three live current petitions refer directly to the Western Isles. On petition PE1421, I was as recently as yesterday in Stornoway, where there is a general consensus that local hauliers have not passed on the benefits of the road equivalent tariff to the general public. However, as you know, there was a debate on the matter last week in Parliament and I am pleased to say that a working group has been established that will include broad representation by key stakeholders.
The report on the removal of RET from commercial vehicles points out that, given the 16 per cent increase in haulage costs between 2008 and 2012—which was mainly due to fuel-price increases—it is hard to assess the impact of the removal of RET against the general economic slowdown. It would be good to get both the leader of the council, and, if he is available, the convener, to give evidence.
Do members agree to that course of action?
Members indicated agreement.
We will continue petition PE1421 and ask the leader and the convener of Western Isles Council to give evidence to the committee on that trilogy—if that is the right term—of transport issues.
Fair Isle Marine Protected Area (PE1431)
The third current petition is PE1431 by Nick Riddiford, on behalf of the Fair Isle community, on a marine protected area for Fair Isle. Members have a note by the clerk, which is PPC/S4/13/11/7, and the submissions.
PE1431 is a very interesting petition; members will recall that we heard evidence on it some time ago. There still are very understandable issues for the Fair Isle fishing community. However, it appears that there are delays in getting resolution from Marine Scotland. I suggest that Marine Scotland appear before the committee or that the committee write to ask it when it will publish the outcome of the final assessment of the demonstration and research proposals. We have been given quite a few promises about that and it is crucial to the next steps. I am relaxed about whether Marine Scotland appears in person or makes a written submission. What are members’ views?
I think that we should meet Marine Scotland in committee.
We should say to Marine Scotland that we note that it has given various times for when the information will be available; that we expect it to hold to publication in the summer; and that we look forward to quizzing it on the report here in committee at the beginning of the new parliamentary year.
Are members happy with that approach?
Members indicated agreement.
Thyroid and Adrenal Testing and Treatment (PE1463)
The fourth current petition is PE1463 by Sandra Whyte, Marian Dyer and Lorraine Cleaver on effective thyroid and adrenal testing, diagnosis and treatment. The petitioners are in the gallery—if I have got the right glasses on. If I have not, I am sorry.
Elaine Smith, who has a lot of experience in this area, would like to make brief opening remarks.
Elaine Smith (Coatbridge and Chryston) (Lab)
Thank you. The petitioners are, indeed, in the gallery.
Since I was last here, the committee received evidence from endocrinologists and others that highlights an urgent need for review of how thyroid patients are diagnosed and treated by healthcare professionals in the United Kingdom. Given that the committee will have read the evidence and that there is a lot of it, I will pick out only one or two comments.
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Before I do that, I want to highlight to the committee a life-threatening situation that patients are in at present. It is fortuitous that the committee is in the process of dealing with the issue, because the sole pharmaceutical firm in the UK that manufactures T3—or triiodothyronine—has stopped production, which people found out about only at the end of last week. That has raised a number of questions, including why was Mercury Pharma Group the only supplier?
There are questions around the price of T3 as well. More than £54 was being charged for a month’s supply when, in other parts of the world, it costs £1 for a month’s supply.
However, the most pressing issue at the moment is the fact that people—mainly women—could die if they cannot get T3; it is akin to diabetics not getting insulin. We would all be grateful for any action that the committee could take to help. I have raised the matter with the Cabinet Secretary for Health and Wellbeing, and some MSPs have contacted me because constituents have contacted them about it.
That leads me to a submission that the committee received from Dr Henry Lindner, who believes that the failures that he outlines in diagnosis and treatment would have been identified and corrected if not for the
“pervasive influence of the pharmaceutical industry”.
That might have a bearing on the fact that GPs who prescribe natural thyroid extract are being reported even though their patients respond well. The committee has also had information on that. Doctors feel constrained because some who have prescribed natural thyroid extract are being dragged in front of the Royal College of Physicians, which is appalling when their patients are getting better.
A submission that the committee received from Dr Maclean talks about the department of health in America and fines to pharmaceutical companies. Dr Maclean says that because the natural thyroid extract is natural, it cannot be patented, which means that there is no funding for it.
It is also interesting that the Medicines and Healthcare products Regulatory Agency has just issued a statement on the T3 situation saying that doctors now need to source unlicensed T3 from elsewhere. However, if we look at the evidence that the committee has received, doctors are being hounded by the establishment when they prescribe desiccated thyroid hormone, which is giving patients back their lives. It is a bit ironic that because one manufacturer has stopped making T3, we are being told that prescribers need to source unlicensed T3.
In another submission, Dr Sjöberg points out that
“There are no clinical trials”
comparing patients on synthetic thyroxine with patients being treated
“with natural desiccated thyroid extract”
even though that was the treatment that was used right up until drug companies began producing the synthetic thyroxine.
The evidence that the committee has received so far from the medical people that it has contacted points to an urgent need for a review of how thyroid patients are dealt with. If I am right, the committee has not yet had a reply from the Royal College of Physicians, but its guidance only covers people who can convert normally. Levothyroxine might help such people, but it does not help others—as Dr Toft said on the Scottish Television news last night.
The reason why some people perhaps do not complain is also in the committee’s paperwork. Blood tests may show that thyroid levels are okay, but people suffer from things such as fibromyalgia and will be diagnosed with myalgic encephalomyelitis, so they will not complain about their thyroid because they will not realise that that is possibly what is causing their other issues, as happened to me.
To summarise some of the committee evidence, 103,000 people have been diagnosed with hypothyroidism in Scotland. It has been estimated that those who have been diagnosed with it make up only about 20 per cent of the people who have it. For every man that it affects, it affects 10 women.
It does not seem to be a national health service issue as such, but it may be training from the Royal College of Physicians that filters down that results in doctors’ hands being tied on the issue. It is therefore unfortunate that there has been no response as yet from the Royal College of Physicians.
Dr Toft has made it clear that doctors need to take a holistic approach to the issue to look for signs and symptoms of conversion failure.
Things are slow in the States, but progress is being made and the reference range has been narrowed—which is also covered in the papers—and it is being re-examined.
Thyroid Change—an organisation that the petitioners are in touch with—is in contact with people in 147 different countries. That gives the committee some idea about the disorder—it is something of an epidemic. It could also provide the key to other problems such as obesity and heart conditions.
The petitioners say in their submission that they
“may be only three anecdotes who almost died”—
I can add myself and make it four—
“but they speak for a worldwide thyroid community and have the support of doctors who are world authorities on the speciality.”
The committee has had a letter from the Scottish Government. Its intervention is extremely welcome, but the Government will only review the paperwork. It proposes to consider diagnosis and treatment in the rest of the UK, but the committee may find it more helpful to look abroad to places such as the US, Cuba and Germany.
The Government also proposes to take about six months to get back to the committee; meanwhile, women are suffering and some people may actually be dying. Committee members recognised that point the last time the petition came before them, and some said that a short timescale for action was necessary.
I ask that the committee do some work that involves speaking to people rather than reviewing paperwork while the Government gathers in the paperwork from the establishment. The committee could take evidence and appoint an adviser, but there is only a short time between now and the summer recess, so perhaps members might consider having a round-table discussion. They could speak to Lyn Mynott, for instance, who was interviewed last night, or Margaret McGregor, who runs the helpline in Scotland that deals with sufferers. The committee could also speak to some of the general practitioners who have been prescribing desiccated thyroid extract about how that impacts on their patients.
Such action might help to get a bit more information while the committee waits on the Government to come back to it in six months. The Equal Opportunities Committee did something similar when I was a member of it; it took evidence while the Government was considering women in prison.
Whatever the committee decides to do, I thank it very much for raising the profile of the issue and for getting a commitment to action that might yet mean that Scotland can become a world leader and that lives could be saved.
I thank Elaine Smith for her eloquent summary of the issues and for giving us tips for the future.
I point out to committee members, in case they are a little bit confused, that some of the references that Elaine Smith rightly made refer to previous papers, which we do not have today.
It is suggested that we have a round table before the six months after which the Government will get back to us are up. Unfortunately, we are unable to do that before the summer recess, because our slots are all filled up with other petitions until then. However, it may be possible—I would have to speak to the clerk—for us to do something as early as possible after the summer.
I throw the discussion open to members. There are a variety of options that we can consider. We can obviously invite Alex Neil, the Cabinet Secretary for Health and Wellbeing, to come along, we can defer the petition until we have had the Scottish Government’s response or we can do something more proactive, such as have a round table with key individuals who have a lot of knowledge on the subject, including patients.
I take on board many of the points that Elaine Smith made and the submission from the petitioners. A round table would be useful, but given the time constraints that you have indicated, convener, I would be keen to find out whether it would be possible to invite the Cabinet Secretary for Health and Wellbeing along to a meeting prior to the summer recess.
The petitioners and Elaine Smith have highlighted a serious situation in which the standard drug that is given to many patients has, in effect, been withdrawn. It would be useful if we could get some assurances from the cabinet secretary about the impact that the manufacturer’s withdrawal of the drug has on many patients throughout Scotland and about the implications for those patients.
As the petitioners and Elaine Smith have said, people are in a life-threatening situation. A drug company withdrew in April this year a drug that is crucial to the wellbeing and health of the patients who receive it, and answers need to be given. We need to get those answers now—not after the summer recess—because, as the petitioners clearly identified last night on the news bulletins, we are in a serious situation. The stage that we are at clearly does not address the seriousness of the issues that many patients face. We need to get answers as soon as possible.
I would like us to find half an hour in a committee slot before the summer recess to invite the Cabinet Secretary for Health and Wellbeing with officials to answer the questions that need to be asked of him about why we find ourselves in this situation.
The committee’s meetings until recess are busy. The clerk tells me that it is not impossible to reschedule, but we will need to do a little bit of work on that. Bear with us and we will see what we can do to achieve John Wilson’s objectives.
I would echo John Wilson. I know that we are all very busy, but we could reschedule, add time or find other time.
I did what Elaine Smith suggested. I have secretarial support from a company in Ayr and the lady who runs that company suffers from the condition. I am surprised and distraught that the supplier has withdrawn the T3 medicine.
I know that the cabinet secretary is wrestling with orphan drugs and things like that, but we have to get a standard process in order to make sure that we have good clinical advice and that the appropriate drugs are available as defined. We need to make sure that that process works. In this case, I suggest that we find the time to discuss the matter with the cabinet secretary at a meeting as early as possible.
I fully support and endorse what has been said by Elaine Smith, John Wilson and Chic Brodie. I think that a round-table discussion should happen, to consider the wider issues. However, there is a more urgent issue of supply of T3 and the fact that the sole manufacturer has ceased production since April. I would very much support having the cabinet secretary in front of the committee before the summer recess; we should juggle our timetable to ensure that that happens.
The issue of production and supply of a life-sustaining treatment that has not been available is very narrow. The wider issues of access to medicines and how we ensure that the system makes available appropriate treatments is for the round-table discussion, as are the wider issues of proper diagnosis. Elaine Smith rightly referred to the fact that there may be an as yet undiagnosed epidemic in the wider population.
When I read the papers for today’s meeting I was interested in the Royal College of Physicians’ statement that it does not support the use of T3 or thyroid extracts
“without further validated research published in peer reviewed journals.”
It would be useful to have it at the round table, to explore that issue with it and the regulatory body, the MHRA, which has clearly considered the safety, quality and efficacy of the licensed treatment. We should get their views on that and on unlicensed treatments, which clinicians are now being advised to make available.
There is definitely a very strong argument to invite the cabinet secretary to committee prior to recess; I am happy to concur with everyone on that.
I have found round tables to be extremely informative on other committees that I have served on. I certainly agree that the RCP should also be invited to attend the round table.
I agree with all that has been said and thank Elaine Smith for bringing the issue to our attention. I think that the matter is even more urgent than she has suggested and we need to speak to the cabinet secretary before we finish up for recess.
I presume that the T3 drug went through the usual process with the Scottish Medicines Consortium and things like that.
Production of T3 stopped in April. I had found out before that that Eltroxin, which is supposed to be the best form of thyroxin, had become difficult to get, which was the start of the problems with the Mercury Pharma Group in April. However, we found out recently that there was a problem with T3 as well, and the people who were on it found out that Mercury Pharma was the only manufacturer of the drug for the whole UK.
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Basically, women—it is mainly women, as far as I know—have been scrambling around and giving each other pills. People do not stockpile them and they have a use-by date, but people have been giving each other pills to help each other out while the matter is being explored.
The problem was with the licensed product. I found it surprising that there was only one UK manufacturer of it. I was also surprised at the price of it. Some people had been recommended to get some from abroad, and I am told that the potency of it may have been different—some people on T3 have been feeling unwell recently and have not understood why.
On its website, the MHRA now says that prescribers should be looking to get unlicensed products through their chemists to meet the need. It is not that the company that manufactures the drug has withdrawn only that product; there may also be problems with other medicines from that company. It seems just to have stopped manufacturing certain medicines, and I am not sure why.
The fact that this has happened to a licensed product is deeply concerning. If there is a hole in the process whereby a pharmaceutical manufacturer that gets into trouble can withdraw a product because it is too expensive to make or too difficult to distribute, we have potentially a big problem. That is why we should explore the problem with the cabinet secretary and a round table. We seem to be running into such problems regularly, and I would like to understand exactly what is done by the clinicians and the SMC not just in licensing products, but to ensure that they do not fall out of the supply chain.
Has the committee written to the manufacturer and the MHRA?
No.
Can we do that following today’s meeting?
That is something that we should action. Ms Smith, can I just confirm something that you said in your opening remarks? Does the company that produced T3 have exclusive rights over the drug? You said that there was an issue around exclusivity.
It seems to have been the only company that was producing the drug. I can give you only anecdotal evidence from my chemist, who knows people who are trying to get T3. He said that Pfizer produce a patented form of T3 called Cytomel that he thought he might be able to source from Pfizer. However, when he approached Pfizer he discovered that the company sells the drug only outwith the UK and is not licensed to sell it within the UK. I do not know the ins and outs of it, but I know that Mercury Pharma is the only company that is licensed to supply T3 in the UK—that is stated on the MHRA’s website.
We do not want to get too technical but, as members have suggested, we can check with the National Institute for Health and Care Excellence and the Scottish Medicines Consortium, which carry out the approval process for drugs in the UK—
Convener, we need to be clear that it is very much a reserved matter and that the licensing authority in the UK is the MHRA, although there are different assessment processes in different parts of the UK when it comes to establishing the cost effectiveness and clinical effectiveness of new treatments. We need to distinguish between the two processes.
As we have found out at other evidence sessions, even individual health boards have individual approval processes. It is quite a complicated area.
It is complex.
The key point is that the matter is urgent and we want to speak to the minister as soon as possible. That may require some rescheduling of our meetings—we will get back to you about that. Members also want to have a round-table discussion after the summer recess involving the groups that have been mentioned. Is that a fair summary?
It is good that Jim Eadie is here, as we can benefit from his experience. I would find it helpful to have a look at what we think the process is for approving licensed products and at the role that each of the bodies involved plays in terms of reserved matters or local responsibility.
You have just predicted the first questions to the cabinet secretary, Alex Neil, when he comes before us.
It would be helpful if we had the information before then.
We will do our best to get that information to you before that.
I can think of a number of questions for the cabinet secretary. It is not just about the licensing of particular drugs. The issue that has been identified is that patients are being denied access to a drug that is assisting them and which is life-saving. That is what we need to ask the cabinet secretary about. There is the cost factor. Elaine Smith and the petitioners highlighted that we are being charged 5,000 per cent of the charge in the rest of Europe—and throughout the world—for a licensed drug. That raises serious questions about the licensing process.
I do not think that we are well enough informed about these issues. We are speculating here.
Just to clarify for Mr Eadie’s benefit, given his experience prior to entering Parliament, the evidence that we have been presented with by the petitioners and that has been highlighted by Elaine Smith today is that the NHS is being charged £54 for a drug that is available on the mainland continent at £1 per prescription. We are being charged 5,000 per cent of what is being charged elsewhere. I am basing that statement on the evidence that has been provided by the petitioners and which has been presented to the committee today. It is up to pharmaceutical companies to tell us whether that is correct. They have the right to defend themselves. However, there are issues here for the cabinet secretary to address. I am sure that he will read with interest the Official Report of today’s meeting and will be armed with answers to the committee’s questions when he comes before us.
Convener, you have recommended a course of action to which I think all members have agreed. In the light of that, we should move on.
Yes. I thank Mr Carlaw for backing up the position.
It may be helpful to the committee to know that I wrote to the cabinet secretary on Thursday when I found out the details of the issue. Furthermore, other MSPs have asked me about it on behalf of constituents. I hope also to lodge some written questions, which I will be happy to share with the committee.
Thank you. The course of action is the one that I mentioned earlier, which is that we will have an urgent meeting with Alex Neil and a round-table meeting after the summer. It has been an interesting petition and there have been interesting—albeit worrying—developments today. I thank Elaine Smith for giving evidence, and I thank the three petitioners in the room for coming along. You can see that the committee is interested in your petition. We will keep you up to date with developments. Thank you all for your hard work.
Interisland Air Services (PE1472)
We move on to PE1472, by Councillor Gordon Murray and Councillor Rae MacKenzie, on behalf of Protecting Inter-island Transport Links, on interisland air services. Members have a note by the clerk and the submissions.
We have already come to a conclusion on the petition, which is that we want the convener and leader of Western Isles Council to come before us. There is only one additional point, on which I ask the committee’s permission to proceed. Before we meet the convener of Western Isles Council, I think that we should try to get some information in writing from Orkney and Shetland councils about their experience, because they have public service obligations in their areas. Are members agreed?
I seek clarification. Are we joining PE1472 and PE1421 in any further consideration of the two petitions?
Yes—that is correct. There is an argument for joining them with the next one as well, but I will come to that in a second. Do members agree to that course of action?
Members indicated agreement.
CalMac Ferries (Wi-fi) (PE1473)
The sixth and final petition is PE1473 by Frances Anne Gillies, on behalf of Barra Youth Council, on wi-fi on Caledonian MacBrayne ferries. Members have a note by the clerk and the submissions. Members will be aware that the petition was picked up by me in advance of our Stornoway away day. The Barra Youth Parliament is an excellent group. A lot of work has been done on this. In fairness to CalMac, it has given us an indication of what is happening. NorthLink Ferries is further ahead and has given us a detailed paper on what it can do.
The young people said that being on a ferry for six hours is a real drag if there is no wi-fi. That applies to the business community, too. It is very important.
It is important that we have CalMac and NorthLink here so that we can run through their timetable in detail. We particularly need to get CalMac’s timetable.
The Scottish Government has said that it is a good idea that it be in the future tender condition, but that that is too far off at this point. We need to clarify what is going to happen on that front.
Do members have any comments? Jackson Carlaw looks pensive.
I am happy to indulge this petition and the previous petition. I stand by my view that—as the Scottish Government response notes—these are matters for councillors, who are elected and have complete discretion over whether to subsidise the routes. They have chosen not to, and a remedy exists for the public—
We are dealing with the petition on wi-fi.
Yes, but I understand that we have coupled the two petitions.
No, that was the air transport—
I see that CalMac has said that it will deliver this wi-fi thing. I am not quite sure what more we are going to achieve, so that is fine.
Thank you for that positive comment, Mr Carlaw. I appreciate that.
On PE1383, we discussed timelines and delivery with the ministers. Where the Government is involved, it is fair for us to say that we do not just want a business case; we want to know when a project will be delivered, how it is going to be delivered and what monitoring will be in place to ensure that that happens. Too many of these projects are open ended—“We’re going to deliver it mañana.” My message is that to do it mañana is not acceptable. We want a time and a date and we want to know how it will be delivered and that it will be monitored in a way that ensures that it happens. I am fed up seeing Government-supported bodies either not responding or not delivering stuff in the timescale that they suggested.
Thank you for that. If there are no further comments, we will move on.